FALLON MIRSKY

Please help SAVE MY LIFE!

October 24, 2014

10665733_831516499301_2597049599461351384_nHi!

I wasn’t going to really write tonight, but I figured that I would write at least a little because there is so much happening right now that honestly my mind is spinning so fast that I am surprised it hasn’t came off my shoulders already and also because I never know where I am going to be anymore. I am also writing because I want to tell you how urgently I need some financial assistance through donations because I am really deteriorating. I thought that we would have at least a little bit of time to try to raise the much-needed funds to try to get me the life-saving treatment, but unfortunately, things aren’t going according to plan. But before I begin, let me begin by bringing awareness and help to my condition. October is known as DYSAUTONOMIA month

ANSchartDysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, digestive tract operation, sweating, breathing, and in severe cases, death. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.

I am at the point that I don’t know about anything anymore. We were originally scheduled to leave for Cleveland Clinic on November 23rd to see some doctors and to get all the final pre-operative testing that would be needed for the upcoming huge surgery, which would be taking place in December. I was scheduled to have because not only am I suffering from dense calcium calcifications in the coronary artery that can easily give me a heart attack and/or stroke, but also the doctors want to also put ports/lines in to my heart so that I can have a central access into me. I am in desperate need for the central access because the surgery that will be taking place afterwards is extremely dangerous and risky and they will need all the access that they can get. Also, with the way I am deteriorating, they don’t want to keep giving me needles and such because my veins can’t take it. The doctors also want to try giving me TPN again even though I have failed it many times in the past due to the autonomic dysfunction because I am severely underweight, as I only weigh in the 60s and my BMI is like 10.8. Therefore, I desperately need the TPN because the upcoming surgery will be very hard on my body and I will need all the help in getting me strong and being able to recover from it. This surgery is extremely dangerous and hard on a normal person, but in me it is a hundred times worse. Everything is magnified for me and I have no reserves to help me in through the recovery process. God forbid I get an infection or something… I am a goner.

The surgery that I am having after the ports and lines are placed in my heart is extremely dangerous and risky. However, my GI tract is completely dead and nothing passes through and I really have no other choice at this point. I have toxins spilling out of my GI tract (especially my colon) and going into my bloodstream, which is then affecting my other organs in the body and brain. I am literally being intoxicated and poisoned because of my GI system and if something isn’t done fast, I will die. Therefore, the doctors have been scheduled to have my colon completely removed after having the heart surgery and receiving 14 days of TPN.  I will be there for quite some time, as I will have to be in Cleveland basically all of December and January and therefore, it is really important I raise a lot of funds because it is going to cost a lot of money and that is also going to be the time that dad won’t be able to work and bring any income in because he will be with me.

So on December 23rd, I am scheduled to have my colon completely taken out. I figured that even though this is an extremely and life-threatening surgery, I felt that nothing really bad can happen this time because it is 2 days before Christmas. Santa wouldn’t let the holiday be ruined. I also felt that I would start 2015 as a healthy individual and leave all my sickness in the past and in 2014. Not only will 2015 be the start of a new year, but I am hoping that it will be the start of a new me. However, I also do need a multivisceral transplant, which entails receiving a new stomach, small and large intestine, liver, and pancreas. Depending on how bad the small intestine is affected when they remove the colon, it will determine how urgently I will have to have the multivisceral transplant.

The multivisceral transplant is known as being the most dangerous transplant that you can have. It is more dangerous than heart, lung, etc. In fact, only 6 hospitals in the country really do this transplant, but thankfully Cleveland Clinic is one of them and the surgeon that I am having is one of the best. In fact, he has done the most multivisceral trnasplants ever, so that makes me feel a lot better. But we do know that this is not going to be a “walk in the park” because not only is the surgery extremely dangerous and risky, but the recovery is not much better either. The survival rate from this operation isn’t too great, but I am at the point that I have no other choice. It is either that I go through with this operation and transplant and have a chance of life… or I basically throw the towel in and that is the end of it.

So as much as I know that I have a very long road ahead of me, I know I still want to live my life. My illness has robbed so much of my life from me and I have yet to experience so much. I want to travel, go gambling in Las Vegas, go to England, go to the Bahamas, go to Disneyworld, etc. I even want to become the doctor that I always dreamed to be so that I could make a real difference in the world and help others so that they don’t have to go through the same thing that I went through. So… even though I know that it will be extremely difficult, I really want to do all this and hope that I make it.

When I was younger, whenever I set my mind to do something… I accomplished it. I was a straight “A” student, got into New York University, was a competitive figure skater, performed at Rockefeller Center, received a perfect score on the highest level on NYSSMA (which is a New York Music competition) on the violin, achieved to get into Long Island Strings and All-County (which are 2 very elite orchestras), was Concert Mistress of my orchestra, was “Spirit Homecoming Queen,” etc. Whatever I wanted to accomplish, I succeeded in doing. Yet, this is one thing that no matter how hard I am trying to overcome this illness, I just can’t do it.

Sometimes I wonder what I did to get this disease. This disease is so horrendous that I don’t even wish it on my worst enemy. I never smoked or stole or did anything bad. So sometimes I wonder why I even got this disease in the first place. However, I know that I am a very strong person, but I honestly don’t know how much more I can take. I am so physically and emotionally exhausted. My parents say that “God wouldn’t give me anything that I couldn’t handle” and that I am “being tested for something big!” With all that I am going through, it better be something BIG because this illness is the most horrible thing you can imagine. No one can understand this disease unless they are actually experiencing it. My dad always tells me that he would “take away the illness from me if he could.” But I always tell him that he wouldn’t last a split second in my shoes. I never met something that you never ever get a break from. I just totally suffer 24/7. There is never a millisecond that I am not suffering unless I am under ketamine or propofol. Those are my “vacations” from my Hell!

Before I got sick… I was so….Normal. I was your typical girl with everyday problems who loved to socialise and soak up life’s best offerings (including cocktails). I was going to school to complete my studies in psychology and was hoping to follow up with going to Medical school so I could become a doctor. I had the strong desire to study medicine and even though I have been not able to physically attend classes allthe time, I have somehow managed to complete a number of subjects online. I guess for now I’m still hanging onto the hope that sometime in the future I will get well enough to be physically and mentally capable of completing this dream of becoming a doctor.

10687244_10101311604056940_1586248655489897400_oMy family are my rock. They’ve all endured so much as a result of my illness. I am certain I could not get through this without each of them. All parents help me everyday to keep hope and belief that things will get better. My dad is an inspiration and an amazing man. He has managed to take me to all my appoitnments no matter if they are local or throughout the country. He does this all while working full-time in a high pressure job and is always on the go. I actually don’t know how he does it all. He is my knight and shining armor, my superman, my best friend, and my dad!

For now I take each day as it comes. I embrace the positives as much as I can and try to push through the negatives and make them work for me. Recovery and healing is hard work on so many levels and I will continue to persevere in hope for the next good day to come…

But I really need help and help now because I don’t know honestly if I will be able to make it to December to have the necessary surgeries. Therefore, we are in desperate need of funds now so that we can go ASAP because to be quite frank… we are BROKE!! I hate to say it and complain, but it is the honest truth. It pains me to say that and to plead for money, but you have no idea what it is like to know that you are dying and your life is literally hanging on the line. You have no idea what it is like knowing that there is a potential treatment that can help you but unfortunately you can’t attain it because you don’t have the money to get it. It is like being a dog and someone is holding a nice delicious dog bone right in front of your face and you aren’t allowed to have it. Sometimes I feel like this is all a big tease. I am only praying that I am going to find the funds to go to Cleveland Clinic so that I can get the lifesaving treatment that I desperately need because I can’t live this long anymore. I am also praying that I even make that long to get it.

Things have really gone from bad to worse. The doctors have always said that I am a “time bomb” waiting to detonate and to be quite frank, I think the time has come that it is happening. It is at the point we don’t even know where we are going to be from one day to the next or even if I will make it through the night or day. I am basically just falling apart.

To begin with, I ended up getting into a car accident last week and fracturing my ribs and sternum. Unfortunately though there is nothing that can really be done to correct this because what really needs to be done cannot be done on me because of my illness. For a typical person, they would have needed surgery and screws and plates placed into them. However, in my condition, that is not even an option. I am too fragile and too hypersensitive for that to happen. Plus, since I weigh only in the 60s, there really aren’t even any places to put the plates and screws. So in the meantime I just keep hurting especially when I breathe and cough. It even hurts worse when I eat because since I can’t keep food down and end up vomiting, you can imagine how much that hurts. I also keep feeling a cracking and clicking in my chest, but I guess that is normal considering all that is happening to me and comes with the territory.

In fact, we kind of ran into a similar problem when I broke my hip a couple of years ago. I really ideally needed surgery but due to my condition, it really wasn’t an option. Therefore, I was bed rested and I basically had to be carried around for 12 weeks. Can you imagine? The doctors and us just prayed it worked because if it didn’t we didn’t’ know what else to do because surgery was definitely not a good option. Thank goodness though, it had worked and I healed.

My bones are just so fragile and weak. In fact, I desperately need a bone infusion that cannot be done in New York and that is one more reason why I am going to the Cleveland Clinic in November. I am going to be having it done there because the doctors are so scared that I am going to have a life-threatening fracture and that is going to be the end of it. But there is also the problem with this bone infusion supposedly causing more osteonecrosis, which I am already suffering from. So the doctors are also scared to give me this bone infusion because I am already suffering from the osteonecrosis and they don’t want to make it any worse.

Speaking of the osteonecrosis, I ended up having surgery on my jaw and teeth a few weeks ago because I had a very bad infection in my jaw and because of the osteonecrosis. The doctor ended up removing part of the jaw and three teeth. However, I am still in so much pain and even though it has been extremely difficult to eat and drink beforehand that all I could eat was extremely limited stuff because of my GI paralysis, it is even less now. I am basically only able to eat ice cream and egg whites. However, I do need to have these medicated ice-pops since they my heart isn’t too good, and unfortunately I can’t have them with this jaw surgery now. It is causing me so much pain.   Just for me to even eat a single morsel of food such as ice cream, ices, or egg whites, I have to take more pain medication to try to ‘numb’ the pain.

I am in so much pain from that surgery on my jaw still. I told the doctors that if I knew how bad this was going to be, I would have never had this surgery and would have let the infection takeover. Not only am I in such severe pain in general, but also I can’t eat or drink anything. In addition, the jaw where he removed part of the jaw and teeth is now coming through the gum as well. More of the jaw has even been dying off too. It is like there are razor sharp bones coming through my gums. It is almost like I am a little kid and instead of having my permanent adult teeth growing in, I am having these razor sharp bones come through instead. It is extremely painful and the doctors have no idea what to do. They are scared to do anything because they are worried that if they did do more and remove more of the dead bone, it would only make things worse. So… in the meantime… I am suffering so much.

There is something going on strangely with my head. I don’t know what it is, but there is this really weird thing going on. If I touch my forehead it basically spasms up and it makes it feel like I am going in the opposite direction that I am touching. It is really weird. Plus it has this weirdly numbing feeling. Something just doesn’t feel right.

My intestines aren’t even doing as good as they have been doing. In fact, they have deteriorated a lot as well. It feels like they have completely become lax and over dilated. I cannot go to the bathroom at all and it is really uncomfortable. Gas isn’t even passing through anymore.

So in the meantime I have been going for my weekly surgeries to clean out my intestines. The doctors are having a difficult time starting the IVs because my veins are collapsing and not as strong as they once were. The doctors have also noticed that I am in a lot worse of shape even though I still have been having these “cleanings” once a week. I need to have my intestines cleaned out because if I don’t, then anything that I take in and I don’t vomit (whatever food and medication remains) will just sit and rot in my colon. The doctors are afraid that it will cause my intestines to rupture and if that happens, I will end up having sepsis and end up dying. In addition, I am having all those toxins pouring out into my bloodstream, which are essentially shutting down my organs and poisoning and intoxicating me.

In addition, I have also had the doctors constantly looking down my esophagus as well and it appears that more stuff than ever is getting stuck. The doctors literally have to push down all the pills that I take because they are getting stuck up in the esophagus instead of going into the stomach. So this is also causing me discomfort because instead of dissolving in the stomach where they are supposed to dissolving and where there is stuff to make you more comfortable, I have it burning up and choking me in me esophagus. The doctors also noticed that my stomach is filling up even more than before so the paralysis is even worse than ever.

I don’t even recognize myself anymore. I used to be the type of person that would try to take the least amount of pills possible because I hated taking pills. Now… I just don’t care anymore. I am willing to do anything and everything just to get out of the pain. It is the most horrendous pain you can imagine.

The doctors have noticed how bad I have gotten and have increased the ketamine done that I am receiving. I used to get the ketamine coma/infusion every other week besides taking the ketamine at home, but now since things are so bad, I am now taking the ketamine infusions/coma every week. Even though I need a much higher dose because the dose I really need is not FDA approved and can only be given in Mexico, at least this lower dose still helps with the pain and we are hoping that it is “containing” the illness as much as possible.

10478804_10101319579204680_6220219074548887699_oHowever, the last time I went for ketamine we ended up having some complications. However not all complications are bad… especially not this one. It turned out my veins collapsed in my arm and I became bloated and filled up on ketamine because the ketamine was no longer going into my veins. Therefore, My arm became all swollen and everything. The doctor had to switch arms so that I could continue having the ketamine, but in the meantime I had so much ketamine in my left arm because it was so swollen and everything that I would be getting ketamine all throughout the night as well because it would take time for the swelling to go down and the ketamine to enter the cells. You know? I didn’t even know all this had occurred because I was under ketamine when it happened. When I came home and saw the bandage all wrapped around my arm because the doctor wrapped up my swollen arm with a bandage and such, I asked why I had that and why my arm looked so fat. It was only then that I found out what had happened. My dad has a habit of keeping things ‘quiet’ until it has to be known. up that was filled all up with ketamine, but I couldn’t believe taI So even though we ended up having that complication, it wasn’t all bad because I at least got a longer dose of ketamine. You know?

So in the meantime… all I can do is hang in there. My doctors want me to head to Cleveland Clinic as soon as possible especially with everything that is going on. I spoke to the doctors at the clinic and they are having a meeting about me to see what is going to happen. I should know tomorrow or on Monday as to what the plan is. Between what is happening with my heart, body, and my head… I am really not doing well. Things are happening to me that have never happened to me before. I am also aspirating like crazy and I am having an extremely hard time breathing. The autonomic dysfunction is totally out of control and the slightest hot thing will overheat me and the slightest cold thing will make me freeze. All I know is that it is urgent that something be done and done fast.

Even though the surgery is scheduled to later on, we don’t think I am going to make it that long especially with all these other things happening. We are thinking about going through the ER to get into the hospital because of how bad things are. But we will still have to have money and funds behind us if we were to do that. So if you can please help me raise funds whether it is by spreading the word, fundraising, or anything else you can think of, please help me. I am really desperate. Please spread the word of my site, which is www.gofundme.com/FallonMirsky. If you really need to get in touch with me, you can always contact me at Femirsky@gmail.com.

On a better note, my favorite author came out with her newest book finally. I haven’t started it with everything going on because I have been too weak to do anything. But I am looking forward to starting it soon. The book is called SHOPAHOLIC TO THE STARS. I read all her other books and they are great.

10680022_10101295230679320_4427613861236313306_oHalloween is quickly approaching and this used to be my favorite holiday of all times. I used to really deck out our house with decorations and I must say that we had one of the best looking houses on the block. We had corn stalks and decorations and skeletons, etc. It was awesome. I also had a blast cutting open the pumpkins, carving faces on them, cooking up the pumpkin seeds, etc. I even loved handing out candies to the kids and everything else that went along with the wonderful holiday.

But I don’t know what it is but now that I am so sick and not feeling well, I don’t have the same enthusiasm that I had for the holiday. I really can’t be bothered with the holiday at all. I have not decorated at all, not excited to give out candies to the kids, not even excited to carve the pumpkins, etc. The only reason I will carve the pumpkins probably is to get the pumpkin seeds out and give them to my family. After all, nothing tastes the same as fresh pumpkin seeds from the pumpkin. I don’t know why but they never taste the same as when you buy them in the store. The same thing goes with apples. Even when you buy them “off the tree,” it doesn’t taste the same as when you actually pick them off fresh off the tree yourself. What would Halloween be like if I didn’t have pumpkin seeds for my family? So I will probably do it on Sunday since it is close enough to Halloween so it shouldn’t mold and make it to Friday and this way my Dad will be around to help.

I guess I should take advantage of this Halloween too because I love pumpkin muffins, seeds, etc. If all goes well and I have surgery and everything, who knows what I will be able to have. I already know that when I am on TPN that I won’t be able to eat anything. So I only hope that I get the multivisceral transplant and it is successful so that I can eat like a normal person again.

Well… I guess that is it for right now. I think I wrote a lot. I want to rest a bit because got to get up in a bit for the hospital. After all, it is Friday and it means that I am going to get my intestines cleaned. Hopefully I will hear from the Cleveland Clinic or the doctors for my jaw and we will know what the next plan of action will be because I can’t take it much longer and all these weird things are happening that never happened before. But in the meantime, please help me raise as much money as possible because without it, none of this is going to be possible. Thank you so much for all your help. I can’t tell you how much I appreciate it. No help is every too little.

Love,
Fallon

1 Comment »

October 15, 2014

10610771_10101234715552120_1201871962943722958_nHi-

I know it has been quite a while since I have written, but a lot has still been happening and I haven’t been well enough to write. I also didn’t want to write until I knew all the information completely because I didn’t want to give you any wrong information. So I figured that since there is so much to know, I would at least try to give it as much as possible.

I guess I should start by saying how I am rapidly deteriorating and desperately need help. I guess that goes without having really to be said already because I say basically the same thing in every posting. However, each time I think that it can’t get any worse and that I suffered enough… It continues to worsen. I just keep spiraling downward and deteriorating. I cry all day long and even cry all night long as well. It is so unfair that no matter what I do, I just continue to suffer. I don’t get a moments relief. I just honestly don’t know how much more I can take.

I know I say that all that time and I am still plugging away, but to be honest… I am so tired. It is at the point that I am getting even too tired to fight. I am losing my will to fight because no matter how hard I try, I just keep hitting brick walls and continue to suffer. I suffer physically, emotionally, psychologically, etc. This is definitely not a life a 32 year old should be living and I don’t even wish this life on my worst enemy. I feel like a dog when they are teased with being given a bone because I feel that I am being teased with treatments and medications being held in front of my face that can possibly help me and yet, I can’t even try them because we can’t afford them. Its just so unfair that I am suffering so much and there could be something out there to help me and yet I can’t even try it to alleviate my suffering because we can’t afford it on our own and unfortunately we aren’t receiving the donations that we desperately need in order to attain these life-saving treatments.

To begin with, I have to still find a way to raise money for the Cleveland Clinic because we are going to be heading there for surgery and it is going to be extremely expensive. We are leaving in November for a week so that we can meet with the doctors and finalize the testing that is needed for the upcoming surgery that will be taking place in December. Luckily, the doctors are allowing me to come home on Thanksgiving because they know how important that holiday is for me and how much I want to spend it with my “family.” The doctors know how important it is for me because this can be my vey last “thanksgiving” since I am not doing well at all and I am rapidly deteriorating. The doctors have already clearly expressed that if something isn’t done fast and quick, I will not make it much longer because I am a time bomb that is detonated and going to explode. Plus, the treatments that I am going to need and undergo are extremely risky and dangerous. That is why I very few hospitals perform these treatments and I have to travel across the country (even to Mexico) to seek these treatments and top specialists because there aren’t many knowledgeable specialists in the area. You would think that living in New York would give me all the needed opportunities I would need to get well, but that is definitely not the case at all. So besides the money needed for the treatments itself, the medications, the appointments, etc. I also have to worry about the traveling expenses as well.

Besides going for the pre-surgical tests in November at the Cleveland Clinic, I will also be seeking the expertise of the endocrinologist because I need a bone infusion that cannot be given in the New York area. I desperately need this infusion because my bones are extremely weak and they are scared that I am going to get a life-threatening fracture.

I am also going to be seeking the expertise of the heart surgeon. One of the surgeries that I will have to undergo in December is heart surgery because I need to put lines and ports into my heart. I will also need to put a central line into my heart to serve as an emergency access port into me for the massive surgery that I will be having later on that month when I have my colon removed. They also are going to be using those ports for TPN because since I am so weak, fragile, and only weighing in the 60s, they are going to try to make me as strong as possible to recover from this surgery to remove the colon as well because it is massive surgery. In addition, the ports will serve as lines to put medications and take bloods from me because I am constantly being stuck with needles, which can easily cause a massive infection on top of everything else… not to mention the pain I am enduring each time that can be alleviated by having this done.

But I also need to see the heart surgeon as well because it was discovered that I have dense calcium calcifications in my coronary artery. So since I have these blockages now, the doctors have to also take care of this as well because I can easily have a heart attack and/or stroke because of it. Never a dull moment.

I am also going to be seeing one the top specialists in my neurological illness. There are not many doctors in the world who are really knowledgeable and can say that they are a “specialist” in my illness. Yes they might be ‘familiar’ with my illness, but there are only about 3-4 doctors that are really specialists in my illness who have been doing research, writing papers on it, and experimenting with different surgeries, and talking about it at conferences. So the doctor that I am seeing happens to be one of them and in fact he doesn’t even see “new” patients. Fortunately I have seen him in the past and therefore, he will be seeing me again.

It is very important to seek the expertise of this doctor because I have really worsened and need desperate help in this area especially since I can’t get to Mexico right now to get the radical intensive ketamine coma in Mexico, which is the treatment that I ultimately need but costs over $100,000 and we can’t afford it.   I have developed severe spasms throughout my entire body that need help as well. I was also told that with everything that is happening, I am also in need of brain surgery.

Yes… you heard right. I am in need for brain surgery. Now on top of everything else I need brain surgery. I feel like a guinea pig and a huge science experiment. Yet, the doctors have discussed it and I need the brain surgery because they think that this is the only way to help my neurological disease besides having the expensive ketamine coma in Mexico, which we can’t afford. Not only will the brain surgery hopefully help my neurological condition, but hopefully it will also help my severe gastroparesis as well.

Since I am in need of brain surgery and brain surgery is one major surgery that you want the ultimate best doctors performing, we are planning to have the surgery also at the Cleveland Clinic because they are known as being one of the best hospitals. During this time, they will be undergoing very rare, risky, and extremely dangerous surgery. They will not only be operating in my brain, but they also are going to be putting a machine in my brain that will hopefully help me deal with the illnesses and alleviate it.

The brain surgery has been saved for the rarest cases. In these cases, it has been successful in the sense where people are able to not be as paralyzed as they was prior to the surgery, the pain is reduced, is able to eat, etc. All of them have experienced some benefit in both pain and mobility from the treatment. They will be operating in my motor cortex area.

As stated before, I am scheduled for surgery in December. I am going to definitely be having the heart surgery to have the ports and lines placed on December 8th. I will then undergo 14 days of TPN to try to make me stronger. On December 23rd, I will then have my colon removed. Depending on how bad it is when the colon is removed, it will determine how long I have until I need to receive multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, spleen and pancreas.

So in the meantime I gotta hang in there. I have been doing so badly that they increased the amount of ketamine comas/infusions that I receive in New York to a higher dose and to a weekly basis. Although I was taking the ketamine at home every night, I was only having the ketamine comas in the hospital every other week. But since it has gotten so badly, the doctors have switched me to every week.

The doctor also increased some of my meds and placed me on Klonopin. It has been doing me the best help at night because it has been “knockin” me out most of the time. This medicine is better than the others because it is also supposed to help with all the anxieties that I am feeling, as it wouldn’t be normal not to feel overwhelmed with all that I am going through. You know? In addition, this medicine is the one medicine that has the least impact on my GI system and the least addicting out of all the other meds that I am on. This is a good thing because I don’t want to be on such addicting medications or medications that will further harm me and further ‘paralyze’ my GI system.

However, my miracle drug still happens to be my ketamine and if I could remain in the ketamine coma 24/7… I would. Even taking the ketamine at home is the best thing out of everything. The only problem is that this ketamine is extremely expensive and we can’t afford it. It is the ONLY medicine that gives me relief throughout the illness. But, like I said before, it is not a drug that is easily affordable. You can’t even get it at a regular drugstore. I have to go to a special pharmacy so that they can especially compound it for me.

So not only are we having difficulty paying for treatments, going to appointments, traveling, etc. we can’t even pay for medications that I desperately need. I desperately need my meds in order just to get by. My medication is extremely expensive and I don’t take a little amount either. In fact, I take over 50 pills daily and the amount of medication that I take is enough to kill a horse. Doctors have already said that a 300-pound man wouldn’t be able to handle the medication that I take on a daily basis.

But my medication is so very expensive and it isn’t even all covered by insurance. For example, a little bottle of ketamine costs me about $200 and it will only last me about 1- 2 weeks (if I am lucky). So… if you can please help me raise money so that I can at least receive the medication that I desperately need to be somewhat comfortable, I would appreciate it.

In addition to all that has been happening, I also recently got into a huge car accident. The car accident was so massive that the air bags went off and I was really hurt badly. This stupid huge Yukon truck hit us in the back and then plowed us into the car in front of us. We really had no place to go because it happened on a roadway that was over water and if we went to the left, we would have hit the cement guardrail and therefore had no place to go, and if we went to the right we would have went off the overpass and into the water. What makes it worse though is that the YUKON truck took off! Despite all the witness seeing the accident and trying to get the license plate number, he got away. In addition, the car that was in front of us that we hit ended up having no license or insurance. What a day that was.

Between all three cars, our car was the worst perhaps because we were the car in the middle of the sandwich. The whole car had to be totaled because the airbags went off, the car is crumbled with the engine being all twisted, and the hood is in the driver’s seat. The frame of the car is even cracked. They even said on the scene of the accident that the car was “totaled!” It is really horrible.

I was also the one that was hurt the worst perhaps because I am the most fragile and weak. However, there was no treatment that could really be done because with my illness, there are very limited things that can be done. What really stinks though is that my disease makes me extremely hypersensitive so a simple needlestick is like someone sticking a knife through me. So the pain that I am receiving from this accident is astronomical because a normal person would be in tons of pain from it… so you can imagine how much worse I am. In fact, as the days go on, I am feeling worse and worse throughout my body instead of actually getting better. I know it is somewhat normal for this to happen, but my disease doesn’t help this. My disease literally spreads through trauma and will cause complete chaos if something occurs in my body… especially a traumatic even like this!

I am in so much pain from the accident despite all the medications that I am already on. I am already on Methadone, morphine, Dilaudid, Motrin, ketamine, etc. … So if I am in this much pain with all these drugs, I don’t want to feel what I would really be feeling without them. I am surprised my stomach hasn’t exploded yet because I have been living on Motrin, which is something that I am not supposed to really have, as the doctors rather me have Tylenol instead. My ribs ache and they think I severely bruised and fractured my sternum and ribs. My heart hurts and my ribs hurt to breathe as well. As I constantly aspirate and can’t breathe, you can imagine how much pain I am in when I have to go and clear the secretions out of my chest. I just hurt all over.

But hopefully today will be better because I am going for another ketamine coma. Like I said before… ketamine is the only thing that really makes a huge difference. It has the power to stop the pain and even reverse the disease if given a high enough dose. However, I need a dose that is so high that only can be given in Mexico because it isn’t FDA approved. But obviously since I can’t get to Mexico because of the insufficient funds, I have to take what I can get and pray that the lesser amount of ketamine will still make a difference.

Finally, it appears another surgery will be needed for my jaw. A couple of weeks ago I had a severe jaw infection and needed to have surgery on my jaw to remove the infection. During that surgery, the doctor removed not only bone but also three teeth as well because of the infection. However, since I suffer from osteonecrosis, I now found out that I have to undergo another surgery in my jaw ASAP because more of my jaw has died. This really stinks too because more surgery on my jaw means more money out of pocket because it isn’t covered under insurance, which is definitely something we can’t afford. I have been having such difficulty with this jaw surgery ever since I have had it, both with the recovery, pain, eating, etc., that I have already told the doctors that if I knew how bad it was going to be… I would never have had it even though it was so desperately needed.

Everything is just dying and giving out on me in my body…. From organs to bones to everything else. My body has always the ENERGIZER BUNNY who has “kept going and going,” but it no longer can do such a thing. My batteries are dying and they aren’t being recharged.

I desperately need help and help soon. In the meantime, all I can do is hope and pray that I will receive the necessary funds and donations so that I can receive the desperate treatment that I need. I just want my life back and just want my suffering to end already. I can’t take this anymore and I can’t do it much longer either.

On a better note, my parents’ anniversary is approaching. On October 19th, my parents will be celebrating their 39th anniversary. I wish I could do something special for them because they certainly deserve it. I am so fortunate to have such loving parents. Some couples are cute together. Others complete one another. But rarely do you have the privilege of seeing two people who seem so perfectly well suited for one another than my parents. I only wish I could make it better for them. For many years, my parents both have always cherished one another with every passing moment (whether they were good or bad). I only hope that this anniversary brings many more, and turn into endless joy of love, laughter, and peace. I cannot begin to describe how blessed I am to have amazing parents in my life. Seeing true love through them makes my heart happy. I love them both in more ways than I can ever tell them.

I am also counting down the days until Tuesday because my favorite author of all times is releasing her newest book. I just love Sophie Kinsella and she is releasing it then. Too bad she only releases one or two at the most a year. She really writes light, funny, and great reads!!

Well… I really must be going because I am leaving for the hospital. It is just another Wednesday, as Wednesdays are filled with ketamine comas. Fridays are always filled with the colon surgery because they need to desperately clean out my colon because my entire GI system is dead and nothing moves. The doctors are afraid of me going into sepsis or something because the medication and whatever food is in me just sits in me and “rots.” So… I have no other choice but to be cleaned out every Friday. In fact, when I go into the OR for the surgery, the doctor always makes me state my name and why I am there and what type of procedure I am having. I always tell him “housekeeping” because that is basically what we are doing!! We are cleaning me up!

Well… thanks again for all your support and encouragement. If it weren’t for your support, I would have never made it this far. Please continue to pray for me. If you have any ideas in how to raise funds, please don’t hesitate to Facebook me or email me at Femirsky@gmail.com.

Thanks again for everything.

Love,

Fallon

Leave a comment »

October 3, 2014

10612742_10101294405652680_3437940944953348918_nHi-

I just wanted to write an update since I haven’t written in awhile. It is honestly getting harder and harder to write these blogs and that is why I don’t write as frequently as I would have liked. I am really deteriorating fast and trying to hold on, but to be honest… it is getting to be impossible.

Any activity that utilizes energy is getting to be an impossible task. It really scares me and upsets me because I was never like this. I was the person to always push… push…. And push more. But I finally have gotten to the point where my body is just “done” and can’t be pushed anymore. It is as if my body finally ran out of batteries. I always thought I would be the “Energizer Bunny” that kept going and going and going. But unfortunately, my batteries are depleted and I can’t get them to get recharged. I never thought it would get this far.

I never thought I would get to the point where I am too tired and weak to do anything. Even the simplest task of making dinner, which is something that I loved to do is basically impossible to do anymore. Even typing my blogs is getting impossible. I can’t even give my mom her injections anymore for her multiple sclerosis. I was the one who every day gave her an injection to combat her MS, but I am getting to weak to do even that. Everything that I was and did… this disease has taken from me. It is so unfair. Yet, I am still hoping that this will still turnaround and I will be able to be “helped” and be able to resume a normal life. I am still hoping to become that doctor that I was hoping to be since I was a little girl so that I can help others.

I would never think that this disease could have taken so much from me. Once an “A ” student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat. This disease is excruciatingly painful all throughout my body 24/7. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. RSD is characterized by: continuous sharp, stabbing & burning pain; extreme sensitivity to touch; severe headaches; painful skin ulcers; intense muscle spams; softening of bones; dystonia; skin temperature & color changes; hair/nail growth changes; muscle atrophy; vascular & Autonomic dysfunction; sensitivity to lights & sounds and paralysis. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.

I also have severe autonomic dysfunction and severe Gastroparesis, as my small and large intestines, stomach, and esophagus are all paralyzed and I cannot swallow. Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition; I cannot keep any food or liquids in me, and I vomit constantly. Doctors tried TPN on me and other ways of feeding me, but they all failed. My body is just shutting down. As a result, I have dwindled down to weighing only in the 60 plus pound range and having a BMI of about 10.8.   In addition, it is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia.

The pain I feel is indescribable and all attempted treatments have not even come close to relieving all my suffering. I have seen many, many doctors, undergone numerous painful tests and procedures, has been prescribed over 50 medications, and has been hospitalized frequently including being intubated and on a ventilator. As a result I now need to have surgery to remove my colon (a complete colectomy), as well as a multivisceral organ transplant, which will encompass receiving a totally new digestive system (new stomach, small and large intestines, pancreas, and liver). Doctors do not know how I am currently living with all that is happening to me, but I am still pushing on and hoping for a day that I am ‘cured’ and able to live my life to the fullest!

Yet, I still love life and want to get better. I am still hoping that through the efforts of others that I will be able to get well. I don’t want to be sick. But unfortunately, I am deteriorating and getting sicker at a markedly fast rate. I hate knowing that in order to get better, it depends on other people because we can no longer afford the very lifesaving treatment that I need to survive. I wish I were independent and only had to count on myself. But unfortunately, my life depends on the help others. So I am hoping and pleading that you help me. I don’t want to be sick and I have so much to offer the world. I can’t take the suffering anymore. The toll this illness has taken on my physically, medically, psychologically, emotionally, etc. is unimaginable. I desperately need help and in order for that to happen I really need help from everyone to make that happen because unfortunately we cannot afford the very lifesaving treatment that I need.

It’s a shame how money dictates so much of how the world functions. But unfortunately it does. So unless I raise some money through donations and fundraising, I don’t see how I will be able to get the very imperative treatment that I desperately need. If you can please help me in any shape or form, I would really appreciate it. No donation or help is ever too small and all is extremely appreciated. Please help me get the treatment that I need because I am not going to make it much longer. I am literally hanging on by a thread. I would be forever grateful for any contribution that you can make.

Unfortunately, we had to cancel this past trip to Cleveland Clinic that we had scheduled because of lack of funds. It was a very important trip too, but since we were unable to come up with the needed funds and no one is going to do anything for “free,” we had no choice but to cancel the trip.

As a result, we now had to reschedule everything and it is all planned out what is needed to occur. It is very imperative that I get to these appointments because I will literally die without them. The doctors are even afraid that I won’t even make it until then, but they don’t know me… I am going to hold on and make it.

We are scheduled to go to Cleveland Clinic during the last week of November, which is also the week of Thanksgiving. Although it is a little while off, I am hoping that it will give us enough time to raise enough money because we are definitely going to need it. The upcoming medical treatments and trips are going to be very expensive and therefore, I am hoping that I will be able to use the next few weeks to raise enough money to help us out so that this all can happen.

I will be seeing so many doctors when I go down that week. Among them includes an endocrinologist because I need a bone infusion that cannot be given to me in New York as well as one of the most knowledgeable specialists in my neurological disease. I am also seeing the cardiologist because my heart is not doing well and I will also be getting all the final clearances done so that I will be able to have all the necessary surgeries that I need in the following weeks.

I need to see the Endocrinologist at the Cleveland Clinic because my bones are so very weak and I can easily get a life-threatening fracture. I desperately need a specific bone infusion that cannot be done in New York and the specialist in Cleveland can only do it.

I also need to see the specialist in my neurological disease because there are VERY few specialists that are very knowledgeable about my neurological disease. A lot of doctors may claim that they know “something” about it, but there are only about 3 doctors in the world that actually are fully knowledgeable in my neurological disease and actually doing research on it. This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it. However, the doctor that I am seeing in Cleveland is one of the most knowledgeable doctors in the world, as he has published and spoke about my disease in depth. Since I am one of the worst cases that have ever been seen, it is extremely imperative that I seek his expertise.

In fact, the doctor in Cleveland is actually not seeing patients because he is considered “retired,” but we are very fortunate that he will see me because he continues to see past patients and since I have seen him many years ago, he will see me again. There is not many treatments or stuff known about my illness and not only is it important to seek his expertise because I am suffering from this illness in itself, but I am also going to be undergoing mega surgery and my illness spreads through trauma, which includes surgery. As a result, it is very important to seek his expertise because since this illness does spread through trauma and surgery, we need to know best how to “control” this illness and best how to help me during these upcoming surgeries. After all, this illness spreads like a weed and it is the most painful disease that you can imagine. In fact, it is the most painful disease in medicine, as it ranks higher than Natural Childbirth, Amputation, Cancer, etc. on the McGill Pain Index.

I suffer from pain 24/7 and never get a break from it. The only time that I can say that I am at “peace” from this illness is when I am under ketamine, which is why I really need to get to Mexico so that I can undergo that radical ketamine procedure that will reverse the disease and put the disease officially in remission.  During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. The Ketamine Coma shows great promise as a treatment for severe RSD. However, even though I do get ketamine here in the United States, the amount of ketamine that I need and is required for this procedure is not FDA approved and can only be attained in Mexico. However, this procedure is extremely costly, as it will cost over $100,000 and we cannot afford it without your help.

In addition, I will also see one of the top cardiologists when I go to Cleveland as well. My heart is not doing well and it was discovered that I have dense calcium calcifications in the coronary artery. I will be undergoing heart surgery to put ports and lines in because the doctors need central and emergency access into me for the surgery to remove the colon as well as because I am doing so poorly, but the doctors are also concerned that I will need further surgeries now because of these dense calcifications in the coronary artery.

The cardiologist that I will be seeing is really supposed to be the best. Fifteen of the top 50 cardiologists are working at Cleveland Clinic and ranking in the top 15 is the cardiologist I will be seeing. I will be seeing the legendary Dr. Irving Franco, who joined and worked at the institution since 1971. He trained under the legendary Sones and subsequently trained two generations of the Clinic’s cardiologists himself. Sones is considered the father of “coronary angiography” and credited with one of the most important discoveries in the history of cardiology, as he discovered a way to form a road map of the heart for medicine and surgery. Sones’ innovation made possible, for the first time, accurate diagnosis of coronary disease and set the stage for the modern era of cardiology and cardiac surgery.

So I am really hoping that Dr. Franco will be able to help me because I am a very difficult case. With my autonomic dysfunction, my poor bloods, etc. my heart is suffering a lot.   Not only will I need heart surgery to put the lines and ports in at the very least, but heart disease and every member of my dad’s family has had a heart attack and open heart surgery. Thank goodness my dad has been the only one so far in his family who has not had a heart attack or open-heart surgery, but it does run in his family. In fact, his younger brother just got out of the hospital this past week from a heart attack and quadruple bypass.

I will also be undergoing medical clearances so that we can come back 2 weeks later to have the necessary surgeries that I will be having. However, I am fortunate that the doctors are going to allow me and get me home for Thanksgiving. I was very fearful that I wouldn’t be home for Thanksgiving because I really wanted to spend it with my mom because Thanksgiving is family time. Plus, with the new upcoming surgeries, I will be missing the holidays, which includes Christmas, Chanukah, and the New Year.

So the even though I am going to Cleveland Clinic in November and will have many appointments, the doctors promised that I would be able to go home for Thanksgiving. Therefore, we are scheduled to leave Cleveland to go home on the actual day of Thanksgiving. There is only 1 flight out the entire day and we are on it. So at least we will be home for some turkey dinner. The doctors feel that with everything that I am going through that it would be an excellent idea to have me home for Thanksgiving and be able to celebrate it as a “family!”

We will get to stay home for only a little bit because we are scheduled to return to Cleveland on December 7th. I will be undergoing surgery on the very next day to put the ports and lines into my heart. The doctors need to do this because not only do they need central access and emergency access to me when I have the surgery, but they also need a way to give me TPN.

The surgery to remove the colon is very intensive and the recovery will be very hard on me. Therefore, they want me as strong as possible. I am so very ill right now that it is extremely dangerous to undergo any type of surgery let alone a very complicated and dangerous surgery to remove the colon. So the doctors are going to be giving me 14 days of TPN before removing the colon.

Even though TPN hasn’t worked on me before because I am extremely hypersensitive and I can’t take anything “foreign” in my body, they are going to try to keep me as comfortable as possible by giving me pain medication as well as keeping me a ketamine drip. Hopefully through all these medications and the ketamine, I will be able to tolerate it because removing the colon is going to be extremely hard on me.

I am then scheduled to remove the colon on December 23rd. It is going to be a very long day when I have that surgery. My mom won’t be there for the surgery, but my dad will be there. I am very scared, but it is something that desperately has to be done. My colon has to come out because it is ‘dead’ and toxins are spilling into my bloodstream and going into my organs. I am literally becoming intoxicated and poisoned because of this. If the colon is not removed, I will literally die.

I will need a multivisceral transplant, which incorporates getting a new small and large intestine, stomach, pancreas, and liver, but it is all dependent on how bad the small intestine is when they go into me and remove the colon. If the small intestine is very badly affected, it will mean that I will need this transplant faster. It is the most dangerous transplant that you can have and only 6 hospitals in the country actually perform this transplant.

I won’t be able to go home until after the New Year. I am a little upset that I will be missing the holidays and won’t be able to see home for so long, but at least I will be starting the New Year as a “new person!” Helpfully I will be able to start the New Year as a HEALTHY person and brand new person! I just hope that nothing bad happens during any of this time because I don’t want to ruin the holidays for my family.

Well… that appears to be the schedule of what is going to be happening. It is going to be a very difficult time until we see 2015. But hopefully it will all be worth it.

I am just scared because I don’t know how I am going to last all this time though in Cleveland. We are literally going to be in Cleveland at least 5 weeks when we go back after Thanksgiving. I don’t know how we are going to be able to afford this because we dad won’t be able to work because he will be with me and we cant even afford it now with him working. That is why I am hoping that these next few weeks will hopefully bring in some much needed donations and hopefully I will find a way of raising the money that I need so that I can receive this life saving treatment.   So like I said before, if you can please help me in any shape or form, I would really appreciate it. Any help would really go a long way!

In the meantime, I really must hang on. I am really not doing well and in fact, the doctors have really increased my meds because they are not helping or holding me anymore. In addition, the amount of times that I have the ketamine comas/infusions is being increased as well. I usually have them every other week in addition to taking ketamine at home. However, now that I am deteriorating and nothing is really working, they are now going to give me the ketamine infusions/coma every week. Thank goodness because at least I don’t suffer when I am under the ketamine.

I am also still continuing the weekly surgeries for my intestines. I have to go for “cleanings” of my intestines because since nothing really passes through my colon, it literally stays in my colon and rots. It can easily perforate my colon and cause me sepsis. Never a dull moment. But not only does it help me medically and help me “buy” time because without these cleanings I can literally die, it also makes me more comfortable as well. I really look forward to Fridays and having this surgery because it really makes a huge difference in how I feel.

I don’t know why but besides getting so weak, I am even having a very difficult time eating… even more difficult than ever. I constantly feel something is stuck in my throat and nothing goes down. Even the littlest things that I used to be able to get down like the ice-pops and egg whites and ice cream are getting to be impossible to get down. To be honest, the only thing that feels somewhat ok or better than other things is gummy worms. I know… sounds weird, right?

I can’t believe that it is already October and the holidays are basically around the corner. I think that I heard that Christmas is less than 100 days away. Gosh… I hope it isn’t going to be a bad winter like it was last year. I can’t take the cold.

10680022_10101295230679320_4427613861236313306_oThis month is Halloween, which used to be one of my favorite holidays. I used to love cutting open the pumpkins, decorating the house, and giving out the candy to the kids. However, as I got sicker and sicker the “fun” of this holiday kinda disappeared. I used to deck my house out with all the decorations and stuff, but nowadays I don’t really decorate. I only cut open the pumpkins because I make the seeds to eat for my family because what would Halloween be without pumpkin seeds? No pumpkin seeds taste the same as when you get them fresh out of the pumpkin. It is like apples… no apple tastes the same as when you freshly pick them from the tree. So I bought a pumpkin that really caught my eye because it has all this stuff all over it. I thought it looked really cool so I bought it. Maybe when I get better next year my love for decorating and celebrating the holidays will come back

So… I guess that sums everything up. I will write more when I know more. My parents’ anniversary is approaching quickly, as their anniversary is October 19th. I only wish I could get them a present or send them out to dinner, but unfortunately with everything happening, I can’t. They deserve so much. They have been married for 39 years. I am glad to call them both my parents and I only wish I have “love” like they do some day. I cannot begin to describe how blessed I am to have such amazing parents in my life.

Well… I am going to get going. Thanks for keeping me in your prayers and for all your encouragement and support.

Love,

Fallon

Leave a comment »

September 26, 2014

10610771_10101234715552120_1201871962943722958_nHi-

Let me warn you ahead of time that this email is very filled with lots of info because there has been and is so much going on. I am really not doing well and with everything happening, my head is literally spinning. My head is spinning so fast that I am surprised it has spun off my shoulders like a propeller.

I am really deteriorating and need desperate help. Knowing how sick I am, how sick I am getting and how I don’t have very long to go… it really bothers me to know that I should actually be in Cleveland right now getting the help that I need to help get me out of my suffering and to help put me on the track to getting better and living a long, healthy, and normal life. Yet, unfortunately, I am here suffering and hoping that I will make it until my next appointment at the Cleveland Clinic comes.

It really hurts me that I couldn’t go to the Cleveland Clinic this week because I am a ticking time bomb that has officially detonated and it is only a matter of time before I explode. However, unfortunately we didn’t have the funds available to be able to go. It is a sham how the world relies on money and no one does nothing for free. My life is literally at stake, but since we didn’t have the money it was a “no go” for us.

I tried so hard to raise the money so that we could go because I needed to get there so badly. I hated to sound like a “beggar” because I never was. Yet, I don’t want to die and therefore, I am basically out of options. I really had no other choice but to actually plead for help. Yet, despite all my pleading and ‘begging,’ we unfortunately didn’t get the funds needed so that I could get to Cleveland.

We really needed to go because I am getting sicker by the day. The doctors don’t honestly know how much longer I can exist this way and to tell you the truth… I don’t know how much longer either. I am barely hanging on. I am so tired. I am so tired of all the pain and suffering. I am so emotionally, physically, and psychologically exhausted. Sometimes I wish I could just close my eyes and close them forever because I am just so tired… tired of fighting.

Despite my attempts to get to Cleveland, I was unable to go and therefore, I had to reschedule all my appointments. These appointments were extremely important also because they needed to occur so that I could have the surgeries that I need. I need to have heart surgery to put ports and lines in, which includes a central line so that they can have emergency access into me for the surgeries and so that they can try to give me TPN. I need to have my colon removed because it is causing me to become intoxicated. The colon is literally spilling poisons into the bloodstream, which are intoxicating all my organs and shutting down my entire body. I also finally will need the multivisceral transplant, which includes getting a new stomach, small and large intestine, pancreas, and liver. So it was very important to get to Cleveland this week so that I could get all the necessary appointments out of the way so that I could get all these necessary surgeries done to save my life. I also needed to get a bone infusion because my bones are extremely weak and the doctors are worried about me getting a life-threatening fracture. So it was also important to see the endocrinologist at this time so that I will be able to get this special infusion because I cannot get it in New York.

Yet, now that we were unable to go to Cleveland Clinic, we had to reschedule all my appointments to a later date. I am only praying that this later date will work out. I only hope and pray that by the time the date arises, we will have the necessary funds. After all, we cannot cancel again. The surgeries that I am having are massive surgeries that incorporate a lot of planning, scheduling, and a huge team effort throughout the entire hospital because many specialists are needed to be on my case and scrub in on the surgeries. So essentially, I am taking up a lot time of the doctors there and we aren’t just talking about one doctor either. So, I was already told that if I cancel again that they don’t know if they will be able to follow through and do the surgery because they can’t keep making plans and then canceling them. I can’t blame them for how they are feeling because I am taking up so much time and I am taking up so much space from doctors’ schedules that could be given to other patients, but I really need help too.

I just hate that I don’t have the money to help myself. Now I know how a dog feels when he is shown a bone and how he is salivating and wanting it so much as he watches it being swung back and forth right in front of his nose and then he is tricked and not given it.

I can’t afford to miss these appointments again. The doctors don’t even know how I am going to be make it that long because I am NOT in the ‘greatest’ shape at all. I am literally walking a tight rope and the only way that it is staying up is by hanging on by a thread. Well, that thread is ready to break, and I just hope that it doesn’t break before I get to the off of it and too the other side. I am really running out of time.

Like I said before, I can’t miss these appointments again because not only is it crucial to my health and I can’t survive without them, but the doctors will not continue to care for me and proceed with all the necessary treatments that desperately need in order to save my life. That is why I am ‘begging’ and pleading to please help me raise the money needed to have all this done. I really need so much help from as many people as possible. If you can please help me out in any way possible… please let me know. I can be reached through email at Femirsky@gmail.com or you can even send me a comment through this. Any help whatsoever is much appreciative. Please help me because I don’t want to die and this is basically my last hope!

Well, if all goes according to plan, I have all the new dates for my upcoming surgeries. The task now is just to hold on and make it until then, as well as to raise the money that I will need in order to go through with them. It just stinks because now I am forced to miss all the holidays. It is a shame that I will have to miss the holidays and spend them all in the hospital because I won’t be able to be with my mom during any of them when holiday time means “family” time. Unfortunately we don’t have the finances for my mom to come to Cleveland with us and therefore, my dad is the one who will be taking me while my mom remains at home. After all, she has to watch the business, house, and animals. Just because we will be in Cleveland, my mom will be having her own troubles and struggles because she will be all alone trying to run the business so that it will survive until my dad gets back and so that some money can be made to pay the bills. We don’t have money to board the animals at the vet and my mom has to take care of paying the bills that come into both the house and office.

But I would have really loved to be with my mom during the holidays. Now it appears though that Thanksgiving, Chanukah, Christmas, and New Years will all be spent in Cleveland. Thank goodness for Facetime because it appears that will be closest I will get to see my mom for the holidays. I guess my family will also lose out on my famous cooking, which I always do on every holiday.

As of right now, I am scheduled to go to Cleveland November 12th. That is the first available appointment that I can get for the specialist that is known for my neurological disease. My neurological disease and autonomic condition is extremely rare and complex that not many doctors are knowledgeable about it. In fact, there are only about 3 doctors in the country who are really “known” to know about my condition, and the one that I am seeing at the Cleveland Clinic is one of them. They have written papers on my illness and everything. In fact, these doctors are so well known that it is impossible to get an appointment with them. They have like a 2-year wait (no joke). So knowing that I have one of the worst cases in the world for my illness and how badly I am doing and how it is spreading, it is imperative that I seek the expertise of a doctor who is very familiar with my condition. In fact, I actually have seen this doctor before and thank goodness I have because this doctor has since “retired” and will only see “past” patients that he has seen.

I am also scheduled at that time to see the endocrinologist. It is very important to see her because I have to undergo a bone infusion because of how weak my bones are. The doctors are afraid I am going to get a life threatening reaction and unfortunately the infusion that I need cannot be given in New York. I also have to see the cardiologist, as it was discovered that on top of everything else that is happening with me, I now have dense calcium calcifications in my coronary artery. This is extremely dangerous because it can easily cause me a heart attack. If you factor in all the other components that I have such as the bad bloods, arrhythmia, bradycardia, autonomic dysfunction, etc. I am a heart attack waiting to happen.

I will only have to stay there for about 3 days for all these appointments, but I will then have to return back to Cleveland Clinic during the last week of November, which is also the week of Thanksgiving. During that time, I will be undergoing all the necessary and final testing that I will need for the upcoming massive surgery to remove the colon. I will need a lot of final testing, which includes getting a special type of stress test because the doctors need to know how my body will react to everything because this surgery is extremely massive and will be putting a lot of pressure on my entire body. I would have had this stress test done already, but when I went to have it done the last time we were in Cleveland, we had to stop it because I was considered “too small” to undergo the test. I didn’t weigh enough and they thought it would be too dangerous to be injected with all the IV dyes needed to do the test. So we had to reschedule it to a later date, which is now, and it has to be a different kind of test.

I am still not counting Thanksgiving out though. I am trying everything to make it home for the holiday… even if it means that I fly on that actual day. There is actually one flight going out that day and I plan on being on it.

Hopefully will be able to make it home for the holiday because I will then have to return to Cleveland then following week to start all the surgeries. I will be having all the lines and ports placed, which includes the central line.  A central line can be used to give treatments such as chemotherapy, blood transfusions, antibiotics, intravenous (IV) fluids and liquid food if unable to eat. It can also be used to take samples of blood for testing, which means not having to be continuously stuck each time you need blood drawn.

This surgery will be very intense because not only do I have to have tubes and ports placed in me and they have to work on my heart, but it will also stir up my autonomic dysfunction and disease because any traumatic event that happens to my body will do that. I am extremely hypersensitive and my disease is known to spread through surgeries and trauma. In addition, as I will have the ports and lines coming out of me afterwards, my body will also have to get used to that as well, which will be very difficult considering how hypersensitive I am.

To help deal with the entire surgery and the central line afterwards, they will be giving me lots of medication including ketamine. I was hoping to be able to possibly come home after I had this surgery and before I had the huge surgery to take my colon out because it will be another 14 days until that will take place, but the doctors are very skeptical about that happening. They feel that this won’t be an option because they don’t think I will be able to get off the ketamine and pain meds to be able to leave the hospital. In addition, they are hesitant to let me go home because it is only for a short period of time because no matter what the surgery to remove the colon will be 14 days after and they are scared that I will get sick or catch something with all the traveling and with being around other people. That would be the last thing that we would need at this point.

I still have to decide whether I want the “Hickman,” which is a tube that is inserted into one of the veins of the heart through the neck or under the collar bone, or a line known as a “PICC line” which is a tube that is inserted that into a vein of the heart by going through a peripheral vein such as the upper arm.

This surgery will be very intense for me.

But as I stated before, I am having the colon removed 14 days after the surgery that was done to put in the ports. Therefore, that means that I will be having my colon removed on December 23rd. I could have had the operation the following day, but I wanted to make sure I was up enough to be able to celebrate Christmas and everything. The doctors are not looking for me to per se gain weight on the TPN or reach a certain number before they do the operation. They just want 14 days of the TPN and they are doing the operation no matter what. In fact, the doctors think that gaining weight will be extremely difficult for me because I have to deal with the refeeding syndrome, which is extremely dangerous and they also feel that the chances of me getting even into the 90s is impossible. So they just want to do the TPN for 14 days to try to get me to be a little stronger so that I will be able to make it through the operation and to help me recover especially since it is such a massive and dangerous operation.

Depending on this removal of the colon will determine how fast and urgently I will have the transplant. It all depends on how badly the small intestines are affected. But we won’t know that until we remove the colon.

So I will be in Cleveland for all the holidays including the New Year. From the time I have the surgery to put the ports in to the time I will be allowed home, it will be about 5 weeks. So I will definitely need as much help as possible with raising funds because there is no way that we can afford to go through with all this by ourselves. That is why I am hoping and praying that others will be kind enough to find a way to help me out as much as possible. Like I said before… any help whatsoever would be much appreciated.

It is definitely going to be weird spending all the holidays including Christmas and New Years in the hospital. But the doctors say that hopefully Santa will be bringing me the best gift of them all… a new lease on life. After all, the huge surgery is right before Christmas. So hopefully I will be starting 2015 as a brand new and healthy person. I really hope that all will work out. It would really be amazing if that happens because I have been sick for so long that it would be a dream come true to be “normal” again and to regain a life again.

In the meantime though, I am still not doing so well in regards to the previous surgery that I had on my jaw and teeth. I am still in a ton of pain and still having a harder time than ever eating and drinking. If I thought I couldn’t eat or drink before because of my gastroparesis, it is literally impossible now. Even the very few things that I could have before such as the ice pops and eggs are giving me problems. The only thing that really feels somewhat ok going down are gummy worms. I know it sounds weird but that is basically the ONLY thing that feels good going down.

It really worries me though because I went to the surgeon and it appears that I am not “healing” and recovering like I should be. It really scares me because if I can’t heal or recover from a surgery like this, how am I supposed to heal and recover from a huge and massive surgery like I am having on my colon and with the transplant?

I was thinking about asking the doctors if they think hyperbaric oxygen might be an option that would help me. I know that it helps people “heal” and therefore, I was wondering if possibly they could do that on me and it would help after the surgery. I don’t even know if the Cleveland Clinic does it, but I can’t imagine them not doing it especially since it is so well known for burns and Cleveland Clinic is such a top hospital in the country. So I will ask and find out. Can hurt to ask.

So I have a huge task ahead of me. I really gotta hang in there so that I can be strong enough to undergo these huge surgeries. Hopefully my weekly surgeries to “clean out” my intestines will also buy me time because without that happening, I am a goner. I have to worry about those toxins spilling into my body and shutting down my organs and I also have to worry about my colon rupturing because nothing passes through. I can easily go into sepsis because everything just sits in my colon and rots.

Well… I guess that sums everything up that is taking place. Not to sound repetitious but I would really appreciate it if you can lease help me. Any help whatsoever is much appreciated. Please say a prayer for me in the meantime! Until next time.

Love,

Fallon                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      `

Leave a comment »

September 20, 2014

10606336_10101274876005250_1891472278616781039_nHi—

What a week this has been. I figured that I would write and inform you all that is happening because there is so much happening lately.

I really don’t know honestly how much more my little body can take of this. I am so physically, medically, and psychologically drained. I am just so tired and barely hanging on. I am supposed to be leaving on Tuesday for Cleveland Clinic, but to be honest with you… I really don’t feel strong enough to go. Between this illness really getting worse and taking over, me severely deteriorating, and the recent surgery I had to remove part of my jaw and teeth, I am just so weak and tired to travel. In addition, we don’t have the funds to even go. But, I do know how important it is that I do get to Cleveland Clinic because I am really a time bomb that has been detonated and I am really running out of time. If something isn’t done fast, I am definitely not going to make it much longer. That is why the doctors at Cleveland Clinic want me to come ASAP because they want me to get the show on the road because they know that I am basically hanging on by a thread. After all, my GI tract is paralyzed, I am only weighing in the 60s, I am being intoxicated and poisoned by stuff entering my bloodstream from my colon and GI system, etc. I desperately need help and help now. But like I said before… I need the funds to do this as well and unfortunately, we don’t have the funds at this time to even go. I am hoping though that in the next few days that I will be able to come up with the money through donations because it is so important that I get there. So if you can please spread the word that HELP is needed, I would really appreciate it.

Going to Cleveland is really up in the air for other reasons as well. Not only do we not have the funds, but I am still also suffering from the surgery that I previously had on my jaw and teeth. I am in excruciating pain from it still and to tell you the truth… if I knew it was going to be this bad, I probably wouldn’t have gone through with it even though I really had no other choice because I had a massive infection that had to be taken out.

The pain is so unbearable that I can’t eat or drink anything. The pain is so much worse for me too because of my illness, as it magnifies everything. I am so hypersensitive because of my illness and therefore, a simple needle stick is like someone putting a knife through me. So you can just imagine what having someone cut you feels like and having part of your jaw removed would feel like.

I can’t even eat or drink on one side because I had surgery on both sides. Even the littlest things are impossible. Between my GI system and my mouth… eating and drinking is a big challenge… bigger than you know. I can’t even have the few things that I was living on before like the egg whites and the ice-pops. I need to have the ice-pops especially too because my heart meds are in them and my heart isn’t doing well as it is. I really can’t afford also not to eat because of my weight. I weigh so little already that even losing an ounce is extremely dangerous and life threatening.

In addition, dad hasn’t been well and therefore, I am also worried about my dad and I don’t know if he is well enough and able to go either. He will have to work so hard when we go there because I get really sick from the traveling and everything and between me and the luggage and everything else… I don’t know if he is “up” to it. I don’t want to get him sicker either. He has had that fever and shakes and everything and that’s literally scaring the crap out of me. He never gets sick so for him to be like this for so long it’s scaring me. We took him to the urgicenter on Sunday, but they place honestly sucks. I would never recommend that place. They gave him an antibiotic but even I said that med stunk. Luckily when I went for my ketamine my doc gave him something else and since he changed to that he has been making a full recovery. But that has only been the last two days or so. Mind u that he never once slows down or anything when he was sick with fever and all. He still worked harder than ever.

Finally, I don’t know if I should go because it would mean that I would be missing my “cleaning out” surgery on my colon next week and since I didn’t have it today, it would mean that I would be missing 2 weeks of it. To go 3 weeks without having it done, it will really not only be extremely uncomfortable but it will also jeopardize my health.

I am really deteriorating and the one thing that was “buying” me time was canceled on me today. I can’t begin to tell you how upset I am over this because not only was it “buying” me time, but it was also a procedure that was the only thing that made me more comfortable. You can’t believe the suffering that I feel with the paralyzed GI system. Plus, the doctors are so worried that I am going to have Sepsis or something because my colon is going to rupture because nothing passes through. As a result, everything just sits in my GI system and rots… whether it is meds, food, etc. My entire GI system is basically paralyzed and ‘dead!’ That is why I need my colon removed and a multivisceral transplant too, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver. Nothing and I mean nothing is moving through and it is through this procedure only that things actually move out of me. I am literally being poisoned by the stuff that is staying and rotting in my GI system. It is shutting down all my organs and I really need help. However, until I get this operation to remove the colon and the transplant, this “cleaning” that I have is the only thing that is “buying” me time until I have it done. Without this procedure being done, I would definitely not make it much longer.

Yet, I still don’t honestly know what to do now because I was canceled today for my procedure to be “cleaned out.” Not only does it cause problems with making me feel worse and cause problems with jeopardizing my health, but it also causes problems because I don’t know if I should be going to Cleveland now on Tuesday. It was really important to have this procedure today because if I went to Cleveland Clinic next week, I would be more than likely missing the “cleaning” next week. However, now that I haven’t had it done this week, there is really no way that I can go 2 weeks with not having it done. I will not only be suffering like you will never believe but all those toxins building up will really be no good and can really cause HUGE problems. It can also cause my intestines and colon to perorate because the colon and intestines are so distended and nothing moves through unless I have this procedure.

In addition, I also needed to go for this procedure today because I needed to talk to my gastro doc about the upcoming trip. I also have been suffering from some new problems lately and I wanted to see what was going on. But now that I haven’t had the opportunity to go for this procedure, I don’t know what to do.

I honestly can’t believe that the doctor canceled me because he knew how important this procedure was to me and how much I needed it. He knew that I especially needed it because not only was it “buying” me time but it was also needed because I was going to Cleveland in the upcoming week. I am so mad because the doc lied to me too. They called me up yesterday saying how they needed my space because he was overbooked. Meanwhile I needed that cleaning desperately because that’s the only thing buying me time and everything. So I explained get all to the girl and how I’m going to Cleveland and everything and she said she would get back to me about putting me back on the schedule. Well they got back and she said that they aren’t doing procedures there anymore because they were suspended after what happened with his. Rivers. I had a feeling she was lying because earlier that day I called and made all my appointments for October.

Therefore, I called the office today and found out that I was indeed right. I was cancelled and the doctor is still doing procedures and everything. I am so upset because he knew how important this was too. I then called my doctor later on and left a message with the girl to have him call me back because I wanted to discuss some of what happened with him as well as talk to him about other things such as how I am not feeling well and all those questions regarding Cleveland Clinic. I also wanted to find out perhaps if he could do the procedure on me maybe on Monday since I am supposed to be leaving on Tuesday. But, like always… the doctor never called me back.

So now I don’t know what to do. If I could change GI doctors, I probably would. But unfortunately, even though NY has plenty of GI doctors, there are not many GI doctors who are familiar with my illness and willing to take on my case. So I really don’t a big list to choose from. I think I exhausted every GI doc that can possibly exist. The only good GI doctors honestly are out-of-state and even though I have excellent doctors out-of-state such as in Cleveland Clinic, I still need to have a doctor in New York so that if something happens at home, there is still someone locally to take care of me.

Who even knows if going to Cleveland Clinic and having my colon removed and having the transplant is the right thing to do. It is such a massive operation that is extremely dangerous. I went to have ketamine the other day and when I was in the coma, my dad was talking to the doctor about the upcoming surgery and such. My doctor had told my dad that if I go for this surgery at the Cleveland Clinic that I am going to be committing “medical suicide” because it is so risky and dangerous. He said that I would never survive the surgery. Yet, what other choice do I have? I have to do something because otherwise I am definitely going to die.

Ideally I really need to get to Mexico to have that ketamine coma that is not FDA approved in the United States. That would be the BEST option of them all. It is the one thing that has been shown to “cure” the illness. Even though it sounds really scary and it is also risky, it is really the best thing to do. However, there is no way that I can come up with the $100,000 to pay for the coma and therefore, I cannot have it. I have tried many way to come up with the funds for years and all I have been doing is not really getting anywhere while I am deteriorating and dying. But it really stinks because money means more than a person’s life. It is a shame that because I can’t come up with the needed funds, I can’t get the procedure that can save my life.   So we can’t just sit back and do nothing since I can’t afford to go to Mexico because I’ll die literally. The only option I have is to have the colon removed and then the transplant. U know?

I really don’t know honestly if it pays to go at this time to Cleveland Clinic or if I should put it off for a bit considering everything that is happening. I really want to go because I am going to be seeing one doc who is famous for my neurological disease. There are very few docs (like 3) who are extremely knowledgeable about my neurological illness and the pain and everything, and one of them is at the Cleveland Clinic. He is retired, but he still sees past patients once a week and since I saw him years ago, I am fortunate that he will see me again. I really want to see him because not only am I suffering immensely, but also the surgery that I had on the jaw really spread my illness as well and therefore, I really need more help than ever. In addition, since I can’t get to Mexico to get that ketamine coma, I am hoping perhaps he might have some other magic up his sleeve.

However, I also have other appointments scheduled besides seeing him. I am supposed to have a whole week worth of appointments. I have appointments with doctors for pre-surgical testing and such because the transplant team wants that colon out of me ASAP. However, the tests and clearances are only good for 30 days and if the surgery isn’t done within that time, then they are wasted and have to be redone. Since we don’t have the funds now, I don’t know how we are going to be able to have the actual removal of the colon because it would mean that I would have to be there for like 5 weeks and we can’t afford it. So I don’t know if I should waste my time getting all the clearances and everything at this point even though I know that I need this surgery ASAP and they want to do it ASAP.

Ideally, the transplant team wants me to go through the week’s worth of appointments and then have surgery the following week on my heart because I need to have ports and lines placed into me in order to go for the surgery. I also need surgery because of the dense calcium calcifications in my coronary artery. They also want to try to give me TPN to help make me as strong as possible for the surgery because it is a very big surgery and I will need all the help and strength I can have. They then have it planned that 14 days after this surgery, they will then remove the colon. But like I stated before… I don’t have the funds to do all this right now so I don’t know if it is worth seeing all the doctors the week prior.

In addition, I am supposed to be seeing the endocrinologist because I really need a very important bone infusion that they can’t do here. The doctors are extremely afraid that I am going to get a life-threatening fracture. However, due to my jaw surgery and everything, I have to wait about 4 more weeks to have this infusion and therefore, I don’t know if it is worth going to the endocrinologist now or if I should just wait until I can have the bone infusion and do it all at once.

I would do anything to get my life back. This is definitely not the life that I thought that I would have. Never in my wildest dreams did I think my life was going to be like this or turn upside down like it has. I should be independent, a doctor, having a family of my own, etc. However, I am now unable to eat, unable to walk, living with my parents because I can’t really move out and care for myself, unable to work, etc. I live a life that is in constant pain 24/7 and I never get even a brief second of relief. I have no social life and I even have caused so many problems for my entire family, as we are in great financial hardships because of me. We really can’t afford anything. We haven’t been out to dinner or even on a family vacation in years. I can’t even remember when the last time we did because that is how long it has been.

I feel so bad for what I am doing to my parents because they are at the point in their lives that they should be enjoying themselves. Yet, they are stuck taking care of me, have no money to do that ‘enjoyment’, and they are working harder than ever. I am so scared because my dad looks so horrible and is working so hard and everything. Plus with his age… It’s freaking me out more because everyone on his side of the family dies early. They have been dying earlier and earlier from heart attacks and my grandpa died when he was 66. My dad is 61 and with him having all this stress and working so hard… He’s honestly a heart attack waiting to happen. If something ever happened to him, I would never forgive myself.

So… as you can see so much is happening and everything is chaotic. I don’t know what is happening. All I know is that unless we get some funds… going to Cleveland is definitely not going to be an option. So if you can please help me, I would really appreciate it. Plus… I need help more than ever in receiving the funds because I need to have this operation done ASAP because if I can’t get the “cleaning out” surgery every Friday like I need, I will be intoxicated and end up dying. So… please help me in any way that you can. Any help would be much appreciated… whether it is spreading my website (www.gofundme.com/FallonMirsky) or even saying a prayer.

Well… I guess that is about it for now. I am going to rest because I am not doing well. Thanks again for all your wonderful support and encouragement. I will keep you posted as to what happens. Hopefully everything will work out for the better.

Love,
Fallon

Leave a comment »

September 13, 2014

10547090_10101274906244650_4722876455866769601_oHi-

I just figured that I would write and let you know how the big surgery went and let you know the absolute latest. I don’t know how much I am actually going to be able to say tonight because I am very sick still and not doing well. But I wanted to at least post something on how I am doing.

The surgery itself went very well. However, my body didn’t take it very well and I am having a very difficult time recovering. In fact, the surgery took such an impact on my body that we think that it spread my illness big time, which is definitely something that we were hoping would NOT happen and definitely couldn’t afford to happen. However, it appears our worst fears have come true in the fact that this surgery has actually spread my disease.

I will be honest with you… this surgery was definitely no walk in the park. The surgery was about 6 ½ hours in length and it really was exhausting for not only me but also my entire team. I must say that I did have the best “team” on my case, as my surgeon was absolutely wonderful. He had meetings with everyone in the operating room prior to me being operated on so that everyone was familiar with my case. After all, I am not the ‘typical’ patient and can’t be treated like the ‘typical’ patient. I need special care and I can’t be touched like a regular patient. For example, the doctors have to be extremely careful with the lower portion of my body because my legs are extremely hypersensitive due to my illness. Nothing and I mean nothing can touch them because of the extreme pain.

So the doctor did everything in his power to make sure that I was as comfortable as possible. He posted signs all over my bed that said “don’t touch legs” in order to aware anyone and everyone not to touch my legs because it would really send me through the roof. He also showed everyone my pictures as well because he wanted everyone to understand my illness and I am definitely not an illness that people are familiar with. The doctor made sure that the room was the appropriate temperature since I can’t tolerate extremely cold temperature and the ORs are usually kept at very cold temperatures. He was extremely gentle and caring in everything that was done. Even when the operation was completed, I was taken off the table and placed into a bed that would be brought up to the actual room that I would be in instead of having me transferred into another bed once we got up to the room. I couldn’t have asked for a better surgeon.

But what a surgery it was. It was a very long surgery that was extremely hard on me and now I am having an extremely hard time ‘healing’ and recovering. I was of course put under general anesthesia and since the surgery had to take place on my jaw, mouth, and teeth, I had to be intubated through my nose and down into my lungs that way. So now that I had to be intubated through my nose, I am now continuing to suffer from bloody noses.

The surgery definitely was a long and exhausting surgery. I ended up having part of my jaw removed, 3 teeth extracted, and 11 teeth fixed. However, I had no choice because I was suffering from a massive infection that needed to be taken care of. Besides suffering osteonecrosis, I developed a massive infection due to my entire body shutting down. My colon is completely dead and as a result, it is spilling toxins and poisons into my bloodstream and the poisons are entering my organs and brain and shutting them down. I am being intoxicated and poisoned by these toxins and I really need to have the colon removed ASAP and also to have a multivisceral transplant, which incorporates receiving a new small and large intestine, spleen, pancreas, and liver. However, I first need to have heart surgery to put ports into it so that the surgeons will have emergency access to my body for these operations as well a way to try to give me TPN so that I can try to be made stronger for these operations since they are extremely dangerous and very difficult to heal from. Yet. I ended up developing this infection in the meantime and therefore needed to deal with this massive infection before we could worry about moving further towards the other surgeries. We also learned that I will also most likely need further heart surgery because my coronary artery has dense calcium calcifications in it. So my heart is being blocked as well, which can result in a heart attack or stroke.

But as I stated before, it was first important to deal with this infection because I couldn’t have these other surgeries until this infection was cleared up. We think it developed because of how bad my body is doing in general. It is just an outward appearance and a reflection of what is doing in my heart and body. My body is just shutting down and dying. As the doctors have continuously told me, I definitely need something to happen to me fast because I am at the point where I am rapidly deteriorating and I am going to constantly downfall until we get this problem fixed.

This surgery was torment. When I woke up, I was in such enormous pain. I was put on a IV pain medication of receiving Dilaudid every hour, but even that wasn’t enough. I never felt pain like I was feeling. Little did I know that not only was I feeling so badly, but also I didn’t look like a ‘beauty’ either?

My dad took some pictures of what I looked like after surgery and when I looked at the pictures it looks like I am wearing lipstick and received Botox. There was so much blood on me that it looked like I was wearing lipstick and my lips were so swollen that I looked like I had Botox. It was horrible.

The hospital had a very hard time managing my case. They had an extremely hard time managing my pain too. For some strange reason, I metabolize drugs so quickly that it’s literally amazing. I take so much drugs (like over 50 pills) that it would easily kill a horse. A grown man weighing 300 pounds probably wouldn’t be ale to tolerate my medication regimen. Yet, I am only weighing in the 60s and I take everything that includes ketamine, dilaudid, methadone, morphine, nucynta, etc. The list goes on and on. Doctors have such a hard time with prescribing medicine for me because by weight, I am so little and should be pediatric size. However, my body metabolizes drugs so fast that it is literally impossible to give me that size dose because it would literally do absolutely nothing for me. Doctors can’t believe how they can’t ‘numb’ me up for surgery and such and that is just one more reason why anything that needs to be done has to be done has to be done under General Anesthesia.

I am really upset that I had to have part of my jaw and teeth taken out. I already feel so ‘ugly’ already. This disease has taken so much from me already. It has taken away my social life, eating, walking, my career, my colon, etc. Now it is even taking away my smile. I already look like an emaciated skeleton and my skin literally sags on my protruding bones because there is no more muscle tone left basically anywhere in my body thanks to this wonderful illness. I can’t believe it is not going after my smile too. I really was fearful I would wake up looking like a Jack O’Lantern. I know that there are implants that can always be done, but when I can’t even afford the medical treatment that I need now, there is no way that I will ever be able to afford implants. Now that I have all this removed from my mouth… my dream and ultimate goal is to have implants done. I would do anything to have my smile back. I feel so inhuman already. I feel like this disease just keeps ripping me apart. What else is it going to take from me?

I really shouldn’t have left the hospital when I did because I honestly wasn’t ready to leave. However, I had surgery in one hospital and I had to leave because I needed to get to another hospital to have surgery today to have my intestines taken care of. After all, I couldn’t miss out on the surgery on my intestines because I needed to have my intestines ‘cleaned out’ because of the poisons that are literally intoxicating my entire body. There really was no question that I had to have this done because since my GI system is dead, I needed to have this procedure, which I have every Friday, as this is the only way I can remove and pass whatever is sitting in my colon. It has to be removed because it is this stuff that is sitting in my intestines that are causing further harm and further spreading the toxins and poisons throughout my body and shutting down my organs and body.

So I spent a few days at the hospital following the surgery on the mouth and jaw, and I was fortunate that my dad stayed with me every minute of it. I was also kept on the same floor that Jennifer Lopez was kept when she gave birth. She rented out the entire floor when she gave birth and now I know why she had that floor. That floor was absolutely gorgeous. It was all carpeted, had a salon, full-length mirrors in the bathroom, and even hair blowers too. I couldn’t honestly believe how nice the floor actually was. It must have been the best floor in the hospital.

Not only was I on the best floor, but also I also really have the absolute best dad in the world. He wouldn’t leave my side for a second. Both my mom and I kept telling him to go downstairs and get something to eat, but he refused to leave my side. He spent literally every minute with me. Who could ask for a better dad?

However, I feel so bad for my dad now because he has gotten sick from spending all that time in the hospital. The room was kept in a frigid condition and he must have gotten sick because of that in addition to the fact that infections are looming big time in hospitals. My dad tried to put towels over the air-conditioner vents to try to warm up the room, but it only did so much. Plus, him sitting over there for the entire time we were up there I am sure didn’t help the situation with him picking up a chill. It was so cold that his ring was basically falling off his hand because his fingers were shrinking because of the cold. Then when he wasn’t eating or drinking anything really to keep his strength up and also not sleeping because he was busy with me… there is no wonder that he got sick.

So now my dad is really sick with a fever and all. He has the chills, his body aches all over, his eyes are bulging, etc. My dad never ever complains that he is sick so for him to do so, it is bad. Yet, he is still not letting any of this get to him because he is still working himself as a horse. He knows that we are leaving hopefully for Cleveland in the week to come (September 23rd) and he knows how desperately we need the money and therefore, he is not even ‘resting’. With being sick and with a fever, he is continuing to work like a horse by working from 4 AM to 7 PM and not even taking a break. I am so scared that something is going to happen to him because it isn’t even where he is ‘well’ now. If anything ever happened to him, I would NEVER forgive myself. He is not only my dad, but also my very best friend. He is my superman. He is everything to me. I definitely would not be where I am today if it wasn’t for him.

But as I was saying before, this operation has not been easy on me. I literally can’t eat or drink anything. I usually can’t eat or drink much anyway except ice cream and egg whites and my medicated ice-pops, but even the very few things that I can usually get “something” down is impossible. I had surgery on both sides of my jaw and therefore, it is impossible to chew or swallow on either side.

We are also having a hard time controlling the bleeding. The incisions just keep bleeding and bleeding. Everytime they stop bleeding, it starts right back up again especially if I eat or drink anything. But I of course can’t afford to lose even an ounce and therefore, I am in a catch 22. I have to eat and drink because of my weight and yet it is so entirely painful and it causes me to bleed even more. Never a dull moment!

I have been in constant touch with the surgeon though about this matter and to control the bleeding the surgeon has me biting on gauze and warm tea bags. It is helping to a point, but then it starts right back up again. I really hope that this gets better soon because it is not only really painful, but I hate seeing the blood that is coming out and it tastes really bad too.

But as I stated before, this surgery was not easy on me and we think that this surgery also spread my illness as well. When I went for surgery today for my intestines, I was getting changed into a hospital gown when I noticed that my legs looked really funny. Last night I noticed my ankles looking a little weird but I didn’t look much into it. However, when I was changing this time, I definitely started to freak out because it was definitely not normal what I was seeing.

I kind of knew instantly what was going on. I knew deep down that it was the disease spreading. But I was hoping that I was wrong. I immediately called in my dad to look at my legs because he was on the other side of the curtain because I was getting ‘undressed’ and into a hospital gown. He didn’t’ like what he saw either. He knew kind of what that meant as well. When we saw the doctor, we showed it to him as well, and he was the third person to confirm the fact that it was the disease spreading, which was something that we couldn’t afford at all to happen.

I don’t know what we are going to do now that the disease is spreading and getting worse. It is definitely not a good sign that the disease spread the way it did. We instantly called my doctor who takes care of my ‘ketamine’ and he wanted me to come in ASAP. However, with everything happening and with the finances, the earliest that I can see him is Wednesday. Yet, with my illness, every day is crucial and counts. I am only hoping that nothing more disastrous will happen in the next few days. I am only hoping that the ketamine infusion that I will undergo on Wednesday will suppress the illness a bit. I know I can’t expect the ketamine to do miracles and work wonders because the amount that I really need to make an impact can only be attained and done in Mexico because it is not FDA approved, but I am hoping at least it will help and hopefully suppress the spread of whatever amount of the disease happened to spread due to the previous surgery. I have never been so scared because this disease spreads like a weed. Once it gets started, it is so difficult to slow down and stop. It just takes over like you wouldn’t believe and it has taken over my body enough. I literally can’t afford for it to takeover anymore.

So as I was saying, I had surgery today to clean out my intestines today. I was not a very good patient today because they had a difficult time getting an IV in me. I ended up squeezing the doctor’s fingers too tightly and bending them backward because of the pain that was occurring as the anesthesiologist was trying to put the IV in me. Unfortunately, I have had so many IVs already that there is so much scar tissue in the area. Therefore, she had a very hard time putting the IV in and I was not holding still. The doctor had to literally hold my arm while the anesthesiologist tried to get the IV in me. I felt so bad for killing the doctor, but the anesthesiologist was killing me. It was so painful!

I really thought it wasn’t going to be so bad ‘inside’ my intestines especially since I haven’t eaten anything for like 4 days. But apparently I was wrong. The doctor told me that it was just as bad and I was so surprised about this because of the fact that I didn’t eat for 4 of the last 7 days. But he explained to me that in my condition, I can literally not eat for many days and the food can be there because my GI system is so paralyzed and ‘dead’ that nothing goes through no matter what. That is why it was so imperative and important that I have the surgery today because I would have had all these toxins and poisons spilling into my bloodstream and going into my organs if I didn’t.

So… it looks like the next week is going to be extremely hectic. My dad is going to have to get over being sick and hopefully I won’t get it. That is a real big fear of everyone. I have no immune system whatsoever and therefore, I literally catch everyone. In addition, whatever I get is so much worse because everything is magnified for me. So, this illness that my dad has can really have a severe impact on me. Plus, with all that I am going through already, my body most likely can’t handle fighting another thing at this time. So we have to really be cautious that I don’t get sick.

Dad has to really take a “easy” too because he needs to rest out this illness. We are supposed to be leaving for Cleveland in the following week (Tuesday, September 23rd) and therefore we can’t afford for him to be sick. Yet, on the other hand, we need the funds in order to go too, so we can’t afford for him not to work either. So… unfortunately working and relaxing are not compatible so who knows what is going to happen.

If all goes well and according to plan in the sense that we have the funds and no one is sick, we are off to Cleveland Clinic in 10 days. It is more imperative than ever to get there now because that is the place where my neurologist is and he is one of the top specialists in my neurological disease. With the disease now spreading the way it is doing because of the surgery on my jaw, it is really important that we see him ASAP because he will probably be the only one to have insight as to what to do since he is one of the “founding fathers” of my illness.

In addition to seeing my the specialist for my neurological illness, we are scheduled also to see anesthesiology and to get all the pre-surgical clearances so that we can go forth with the surgeries to have the heart surgery to put the ports in and the TPN and then 14 days later to have the colon taken out. Depending on how the small intestine looks and such inside will determine how urgently I will need the multivisceral transplant. We are also going to be seeing the heart specialist because we have to know what to do with the blocked coronary artery now since I can easily have a heart attack or stroke. We are also scheduled to see the endocrinologist too, which is a very important appointment because she is supposed to be giving me a bone infusion that I desperately need since I have extremely weak bones and the doctors are extremely worried that I am going to suffer from a life-threatening fracture. If all goes well, they want to proceed with having the surgery for the ports at that time as well. So it is a very important trip there. I just hope it all works out.

When I think about having to go to Cleveland Clinic in 10 days, I don’t know how I am going to do it. I am in so much pain and I am so mentally and physically exhausted. I also don’t have the funds that are needed. There is just so much to do before we can even go. Yet, knowing that my disease is now spreading and everything, I know I have no other choice but to go. I only hope that we will be able to go and everything will work out.

So that appears to be it. Other then that nothing else is really going on. I have been trying to read Joan Rivers Book called “I Hate Everyone… Starting With Me” and I am also reading “Finding My Prince Charming” by J.S. Cooper. They seem pretty good. I can’t wait for my absolute favorite author to come out with her book, which is in October. I just love Sophie Kinsella and her “Shopaholic” books.

Well… I am going to get going. Thanks again for all your support and encouragement. Please continue to pray for me. Please continue to spread the word of my donation site (www.gofundme.com/FallonMirsky) because donations are strongly needed. I need so many lifesaving surgeries, medications, appointments, etc. and unfortunately I cannot receive them without help.

Thanks again for everything. I wouldn’t be where I am today without your wonderful support and encouragement.

Love,
Fallon

Leave a comment »

September 10, 2014

10646992_10101272589307810_3082326574675963917_nHi-

Just want to give you an update as to what is happening because a lot has happened and in a few hours I will hopefully be under anesthesia and in surgery.

I am writing to let you know the very latest because so much is happening. In a few hours I will hopefully be undergoing another surgery that will hopefully be successful. I have to leave in a few hours for the hospital and since I can’t ‘rest’ because I am so nervous, I figured I would spend this time updating you on all that has been happening.

As I just said, I have surgery in a few hours. I am extremely nervous and scared. But thankfully it is for a change actually “local.” However, even though I am actually having surgery in the area and I will be in a hospital close to home, my dad will be staying right by my side throughout the entire time. I am so thankful for my dad because he is so amazing. I can’t thank my dad enough for all that he has done for me because I definitely would never have made it this long or made it this far without him. He is not only my “dad,” but he is my best friend. He is also my “Superman,” my knight and shining armor, and the person who made me who I am today!! I can never thank him enough. I only hope that he will be around to see the day when I am “cured” and I become a doctor so that I can help others so they don’t have to suffer like I do.

I am heading to the hospital today to have surgery on my jaw and teeth, as I have severe osteonecrosis and a massive infection going on. I am rapidly deteriorating and dying and I really need to get to Cleveland Clinic so that I can have the necessary lifesaving surgeries to save my life. I need to have heart surgery because not only do I need ports placed in my heart because of TPN and because they need central and emergency access to my heart for the upcoming surgeries, but I also need to have my colon taken out and have a multivisceral transplant. Yet, these surgeries in Cleveland cannot happen until this surgery that is taking place today happens because I am suffering with a severe massive infection. The doctors have to try to remove the massive infection before they even try to do these very risky and dangerous surgeries.

It appears that since I am doing so horribly and since my entire GI tract has shut down that I am spilling toxins into my bloodstream, which is poisoning my entire body. The toxins are poisoning my organs and brain and essentially shutting them down. Therefore, I have developed a massive infection in my jaw because I can no longer “fight” anything anymore. What is happening in my jaw is just a reaction to what is actually occurring throughout my body. Therefore, it is imperative that this infection be taken care of as soon as possible because I desperately need the other surgeries at the Cleveland Clinic as soon as possible.

Today’s surgery is going to be one massive surgery. The surgeon is going to have to remove part of my jaw, teeth, and even remove nerves as well. I will also be having metal being placed into me. I am so worried that I am going to wake up looking like a “Jack O’Lantern!” This disease has taken so much from me such as my social life, eating, walking, a career, money, happiness, etc. and I hate to think that this is now going to take away my “smile” too. I don’t know what I will do if I wake up and I look even worse than I do now because I already look horrible. To think… I was one time pretty. Now I just consider myself an “ogre” and I won’t even put up a picture without airbrushing it and fixing it up beforehand. I am nothing but an emaciated skeleton and I have no muscle tone anymore. My skin literally just hangs on my protruding bones because there is no muscle tone anymore.

I just hope that everything will go “ok”! My dad will be with me during the entire time. He is even spending the night with me at the hospital because I can’t be treated like a “regular” or typical patient. I am a very complicated person and therefore, I need special attention. For example, during the surgery, it will probably be standing room only. There is going to be at least 2-3 anesthesiologists in the room and other specialists as well. I even can’t get an IV like a normal person. The last time I had surgery, I ended up gaining 8 pounds on one bag of IV because they ‘pushed’ it and it ended up causing further problems because it set off the autonomic dysfunction.

I need this surgery to take place so that I can get to Cleveland Clinic as soon as possible. If all goes according to plan, I have surgery in a few hours. I will of course be admitted and then I will have surgery again on Friday to “clean out” my colon like I always do. We are then supposed to be leaving for Cleveland on Tuesday, September 23rd. However, this is as long as if we have the funds behind us, which as of now we don’t.

That is why it is so important to get all the help that we can get. I have so many upcoming procedures and have to travel to Cleveland and everything that it is going to cost a lot of money. However, we don’t have these funds and unless we do, we will not be able to do all of this needed stuff, which is needed to save my life. So if you can please do anything to help… whether it is to do a fundraiser, spread my website, saying a prayer, etc. I would really appreciate it. I am really rapidly deteriorating and I am basically in “survival” mode. According to doctors, I am not going to make it much longer unless something is done and done soon. I know that I have defied medical odds before and I have existed this long, but I know also that my luck in that area has also ran out. I have been in constant contact with Cleveland Clinic even though I am not there at the current moment. The doctors say that time is running out and I need to get there quickly.

When I went to have pre-surgical testing at the hospital for this upcoming surgery, they saw how bad I really was. Even though the hospital had an idea about my condition because they had a meeting prior to me coming about me and my condition, they even said that they didn’t really think it was this bad or understand it completely until they actually saw it.

The doctors were really shocked when they saw how swollen and bloated my stomach was. It is also hard as a rock. When Cleveland Clinic heard about it, they were not ‘happy’ with this news because they said my body is failing and need to get to them ASAP for surgery because time is running out. It has also been getting even more difficult to eat because nothing is going down anymore. Since my GI system is essentially ‘dead’, it doesn’t push anything down and through anymore. Therefore, it constantly feels like my entire esophagus has something in it.

Well… I just wanted to really alert you that I have surgery in a few hours. I just hope that everything will go ok. I told my parents that I hope the Toothfairy gives me money and bonus bucks too because of all that is happening. My parents laughed over that.

I really hope that everything goes smoothly. It is getting time to leave so I am going to get going. I want to rest up for a bit. I had a busy day today already because I had my dad’s birthday today. He turned the big 61. I only wish I could have made his birthday better for him and got him all the presents that he deserved, but unfortunately it just wasn’t possible. My father is the absolute BEST and deserves to be treated like the ‘king’ of his caste. Yet, instead of sitting back, relaxing, and enjoying his life… he is working harder than ever and trying to do as much as possible to get me well.

I will write again after I know more. Please say a prayer for me and please continue to share my website. Thank you for all your continued support and encouragement.

Thanks again,
Fallon

 

Leave a comment »

September 5, 2014

10551717_10101258354619240_3504572953572801051_oHi-

I have wanted to write for a while now, but haven’t been well. Plus, a lot has been happening lately and I didn’t want to write anything until I was sure exactly what was happening. But not that everything seems to have “simmered” down in terms of what exactly is taking place and when, I thought I should inform you all that is happening because there is a great deal that has been occurring since the last time I posted anything.

It seems like the harder I try to overcome this illness… the faster I am deteriorating. I literally can’t catch a break. The doctors have always said that I was a “ticking time bomb waiting to go off” and guess what? The time seems to have come that the bomb is finally going off. I am freefalling basically and there seems to be no stopping this illness. Whereas before we tried “littler procedures, surgeries, and treatments” because they were cheaper, more affordable, and not as invasive… it appears now that unless we do the major treatment, which are the colon being removed and the transplant… I am not going to make it much longer. There is no guarantee that even with the colon being removed and the transplant that I will be able to “beat” this illness, but that is my best option. I need to have the colon removed and this transplant because the toxins that are being produced by the colon and GI system are literally poisoning my entire body and shutting down my organ including my heart and lungs. It is causing massive infections in my body that I can’t even fight anymore. Of course I also need that huge intensive ketamine coma (which will cost $100,000) for my neurological illness and autonomic dysfunction in Mexico because the amount of ketamine in the United States is not FDA approved, it is more important right now to deal with eliminating these massive infections that are raging in my body because they are going to kill me. I am at the point where I can’t fight anything and my body is shutting down because I can’t even absorb nutrients anymore.

My tightrope is basically snapping, and I am plunging to my death.   I am basically drowning in debt and yet, I desperately need these surgeries in order to survive. That is why I desperately need your help. Unless something is done quickly and unless I get the colon removed and the transplant at the very least, I will not have to worry about anything else because I am honestly not going to last much longer. Yet, even to get the colon removed, I still need other surgeries prior to it in order to ‘prep’ me for the surgery and to make it successful because they have to make me as strong as possible to survive the surgery since it is one of the most dangerous surgeries a person can have and they also have to manage this massive infection as well because it can easily kill me.

Therefore, I am pleading for your help. I desperately need any help that anyone can give me. Even $1 is one less dollar that we have to worry about. If you can please help, it would be much appreciated. I am really suffering and I am really knocking on death’s door right now. If you can please donate, I can’t tell you how much that would mean to me. Also, please say a prayer for me and please spread the word of my website. Perhaps through your prayers and through you spreading the word to others, I will be able to receive the necessary help that I need to get the treatment that I desperately need. Without your help, I will be honest with you… I don’t know how we are going to be able to afford all this. This surgery for the colon and transplant is going to be a long and very expensive road!

As I have stated in past emails, my GI system is basically paralyzed and ‘dead.’ Nothing is passing through and as a result, I am being intoxicated by all the poisons that are leaking into my bloodstream and entering my organs and brain. I am literally going into heart failure and lung failure among other things because of this. As a result, we knew that my colon was going to have to come out and a transplant was going to be needed, which included getting a new small and large intestine, stomach, pancreas, and liver. It is an extremely dangerous surgery and it is the most dangerous transplant that you can have. Only like 6 hospitals in the country actually do this transplant.

However, in order to do this surgery and transplant, the transplant team said that I would need a central line placed in me such as one called a HICKMAN. The HICKMAN would allow the doctors emergency access into me, would give a way to deliver medication and also a way to draw blood from me. It would also take away the need for repeated peripheral IV sticks. Finally, it would be a way to give me TPN so that they can try to feed me because I only weigh the 60s and I can’t afford to lose any weight. In addition, I am extremely malnourished and my body can’t fight any infection whatsoever. I desperately need the TPN because I am not in the state that I can definitely survive even a simple operation because I am so ‘weak.’ I have no reserves and no resistance towards anything. The doctors don’t even know if I will be able to heal and they are scared that I won’t be able to heal especially when I undergo a MAJOR surgery like this.

But just as we were about to leave for Cleveland Clinic to have the port placed in me so that we can get the show on the road so that I can have the colon removed and then the transplant… everything just started to fall apart. That is when the huge downfall that started and now there seems to be no stopping it. When I went for pre-surgical testing it turned out that my heart was doing worse than we originally thought. Not only is my heart failing me, but also it turns out that I have dense calcium calcifications in the coronary artery. This is definitely a big “uh oh” and very dangerous because it can easily cause me a heart attack or even a stroke. The doctors wanted me to go for a “stress test” to further determine how bad it is, but when I went for the test they had to stop it and they couldn’t do it. It turns out that I am too small for the test and they didn’t know how much radioactive stuff to give me because of my weight. So I couldn’t have that test after all. They have to come up with a new way of doing that test now.

In addition, I developed an infection in my mouth and jawbone, as I have osteonecrosis and the left side of my jaw basically was giving me a lot of problems. As a result, the Cleveland Clinic said that I needed to have the surgery to deal with the infection in my jaw and mouth prior to having the port placed in me and then following with the rest of the surgeries. However, with it being the end of the summer and Labor Day, it was difficult to schedule because the doctor was on vacation and everything. So the surgery was finally scheduled for mid-September!

In the meantime though, I ended up developing a massive infection on the right side of my mouth and jaw as well. So now not only do I have an infection on the left side of the jaw that needed surgery on, but also now I developed a massive and I mean massive infection on the right side. The right side is so bad that there is no saving the teeth there or the bone. The doctor said that the infection is so bad that even in a healthy individual that the bone and teeth would have to come out because the infection is just too horrendous. So whereas the surgery was originally scheduled for mid-September, the surgery was just moved to this coming Wednesday, which is like 5 days away.

I just don’t understand it. No one takes better care of his or her mouth than I do. I mean I literally brush my teeth and gums like every time I eat, which is like at least 3 times a day, and I use a special fluoride treatment that is supposed to be really strong. But it seems that the more I try to keep my mouth in tip top shape, the worse it’s getting. My jaw and teeth are literally crumbling.

It turns out that my body is failing me so much and my heart is doing so bad that it is now showing itself in my mouth, jaw, and teeth. When I spoke to Cleveland Clinic, they said that my organs are failing so badly and that is why all this is happening in mouth and jaw. They said that I am extremely sick and desperately need surgery for my colon and transplant ASAP. They said that my body isn’t going to make it much longer. They told me that my body is in “survival mode” right now in that all my veins literally shrunk and even the values that are being shown on the bloods are not the true value because of this shrinkage of the veins. They said that my bloods are really much worse but because of the veins shrinking, the values are elevated since the veins are so small and the values go per ml. But if you took normal size veins and put them in me… you would see exactly how bad it really is. So we already know how horrendous my bloods are now… I can’t imagine how much worse they really truly are. I don’t think I even want to think about it. My veins are shrunk so much and my body is in survival mode and that is why I am so thirsty. I just can’t absorb anything anymore.

So now I scheduled for surgery on Wednesday to take care of this huge massive infection. I am really scared and worried because I am scared that I am going to wake up with no teeth in my mouth. I already know that part of my jaw will be missing, I am going to be losing at least 3 teeth, and I need at least 4 root canals. At least I will be under general anesthesia, so I won’t feel anything. It is going to be one long day though and one really long surgery. I am so scared though what my mouth is going to look like. This disease has taken so much from me already… I don’t want it to take my ‘smile’ as well. This disease is literally stripping me of everything. It is stripping me of my social life, my colon, my intestines, my stomach, the ability to walk, the ability to eat, etc. and now my smile.

I don’t want to wake up and look like a Jack Lantern. I don’t know what I will do if I wake up and you can see all those spaces when I open my mouth. I know that you can always get implants, but implants are expensive and I know for a fact that will NEVER be an available option for me because I will never be able to afford them. I don’t even know how I am going to afford this surgery because even though the hospital is covered by insurance, the surgeon is not and I know that is going to cost us an arm and a leg. Last time I had this surgeon work on me it cost us about $7000 and it wasn’t nearly this bad. I am so scared.  

So surgery is scheduled for Wednesday at 8 AM, which means that I need to have everything done by Monday in terms of clearances. I need to have clearance from my medical doctor, anesthesia, cardiac, pulmonary, and also have an echo. I really don’t know how on earth I am going to be able to have all that done by Monday especially since I have surgery today (Friday) and then I am sure that I am not going to find a doctor that works on the weekend. Therefore, I will really have to hope that everything can be done on Monday. I have medical clearance and anesthesia clearance definitely on Monday morning. However, I don’t know how I am going to get the other 3 accomplished. I only hope that perhaps the hospital can fit me in to have those as well when I go to see them on Monday for anesthesia clearance. I can’t believe I was just told today that I needed all these clearances and I need to have it done by Monday. I can’t afford to have my surgery postponed and yet, I definitely need these clearances because of how sick I am especially since my heart and lungs are failing me among other things. Never a dull moment, right? So we will see what will happen. As it is the hospital wasn’t going to give me anesthesia on Monday because they said they were all booked up and wanted me to only come today for it. After I had to tell them literally how sick I really am and how I had surgery today to clean how my intestines like I do every Friday, they finally granted me the ability to come on Monday. But what a fight that was to get!

I am really hoping that everything will go ok and the infection will get cleared up. I know already from the doctors that it is a very massive infection… even for a normal and healthy person. I have been on a very strong course of antibiotics, so to be honest with you I am really unsure how it even developed on the other side and even got so huge when I was taking that high dose of antibiotics. The doctors say that due to my GI system being ‘dead’ that I don’t absorb anything. So apparently even though I was taking all these antibiotics, I was just not ‘absorbing’ them. Hopefully though after I have this surgery, I will be able to have the infection clear up quickly because while I am in the hospital I will be given IV antibiotic which will hopefully definitely be absorbed because it bypasses the GI system and goes directly into the bloodstream. I definitely need this to be cleared because doctors have determined that toxins from the bacteria in the infected tooth and jawbone may inhibit the body’s natural ability to suppress tumor development.

Well Wednesday is the big day!! I am scheduled for 8AM surgery. My dad will then spend the entire day and night with me because he can’t leave me alone in the hospital since the surgery is being done here and the nurses and doctors don’t really know how to ‘care’ for me because I can’t be treated like a typical and normal patient. I need special care, as I can’t really be touched especially on my legs. Also, if I need meds, to go to the bathroom, or something, someone has to make sure that I get it right away because I am so hypersensitive that I can’t wait. I am hoping that my mom will be able to come up to the hospital that night to visit me. Usually I never have surgery in the state and therefore, my mom never gets to come to the hospital to visit me. However, now that I am actually having surgery in the area, I am hoping that she will be able to come up to the hospital. But it all depends if I am done with surgery and if I am out of the ICU.

10495819_10101263858190040_8612725183943172209_oI am so glad and fortunate that my dad will be with me. I really do have the best dad in the entire world. I just feel so bad because I know he really is working so hard to finish all his work, make money, take me to doctors and care for me at the same time.   I feel so bad because he is really working like a horse and he is no youngster. There is nothing that he wouldn’t do for me and I am so grateful for that. But I don’t want him to kill himself in the process. If anything ever happened to my dad, I would never ever forgive myself.

So it is really going to be hectic next week. Between all the clearances and surgery, I am really going to be busy. I also have my typical surgery on Friday to get my intestines cleaned out.

Besides having the surgery on Wednesday, we are scheduled to leave for Cleveland Clinic about a week after the surgery.  But even with going to Cleveland Clinic, there is still so much to do before we even go there. I need to get a updated bone density scan because I am seeing the endocrinologist when I go to Cleveland Clinic. I need to have a bone infusion because my bones are so very fragile and they are scared that I am going to get a life threatening fracture. I also need to go to my pain management doctor and pick up my pain meds because I can only get them in New York and I am due to for them. So there is so much to even do before we even leave for Cleveland. I don’t know how we are going to fit everything in.

So dad and I are off again to Cleveland Clinic. Not only are we seeing the Endocrinologist and hopefully having the infusion at that time as well instead of having to come back for the infusion, but I also have an appointment with all these other doctors to get the necessary clearances for the surgeries that I need there. I also have appointments to further look into my heart. I also have an appointment with the doc who is supposed to be one of the leading doctors in my neurological disease. He is retired, but he still comes back once a week to see his “old” patients.

If all goes according to plan, the Cleveland Clinic wants to do the heart surgery at the end of that week. They want to deal with putting the HICKMAN central line in and they also want to do the heart surgery to deal with the dense calcium calcifications in the coronary artery because it is causing a blockage. They really want to get these surgeries done ASAP because not only do they want to get the show on the road because the sooner I have these surgeries, the sooner I can have the colon removed and transplant, but they want to have a central access into me because I am really not doing well and this is an emergency way to get access into me right away. Also, they want to deal with the heart surgery because I can easily have heart problems such as a heart attack or stroke because of the dense calcium calcifications.

The plan is that I will be able to come home for a bit after these surgeries at the Cleveland Clinic and after I get the TPN going in the central line. After all, they want to give me about 14 days of TPN before I undergo the surgery to remove the colon because this way it will give me some time to get some nourishment and build some reserves up so that I can ‘heal’ from the operation and fight infection. As it is… the doctors are extremely fearful of the operation that I am having this coming Wednesday because they are afraid I won’t heal or that I am going to get even sicker.

However, they will only allow me home for a little bit until I get the colon removed only if I can tolerate the TPN without the ketamine. I will be getting TPN with ketamine so that I can hopefully get the TPN more comfortably since in the past I wasn’t able to tolerate the TPN. The hope is that the ketamine will keep me as comfortable as possible especially since ketamine is known to “quiet down” my neurological illness, the autonomic dysfunction, and pain. However, if I can’t get off the ketamine, then I will have to remain in the hospital for the entire time I get the TPN and until I get my colon removed, which is for about 14 days. I will then have to stay in the hospital for about 10 days after the colon is removed and then even stay in the hotel in Cleveland for about another week or so after that to make sure that everything is “ok” before heading home. So if I can’t go home before the colon is removed, I will be stuck in Cleveland for about 5 weeks. It will come out to 5 weeks no matter what, but it is just a matter of being able to go home in the middle for a bit or not depending on whether I can stop the ketamine and tolerate the TPN by itself. Depending on how badly the small intestines are when the colon is removed, it will determine how fast I will need the transplant.

I just wish I could close my eyes and it will be over with already. I don’t know how much more I can take of this. It is just too much already. I can’t take it physically or emotionally anymore. I have to say though that I never met a better team of doctors than the Cleveland Clinic. My transplant team is simply amazing. They really take the burden off of me with everything. In New York and every other place I went, I had to make my own appointments and worry about everything. Yet, the transplant team in Cleveland Clinic actually handles everything for me. They are completely on top of me. They wanna know everything about me, they make all my appointments for with any specialist I need (even if it isn’t directly related to the transplant), they get me in with doctors that are booked or don’t even have hours, they call back and spend countless hours on the phone talking to me and explaining things and answering my questions, etc. They are simply the most amazing doctors that I have ever met. I am so glad that I have them as my doctors. I don’t think I have ever been happier.

Well I have my surgery in a few hours to clean out my intestines. It’s just another Friday. I wonder though how it is going to be because my doctor is the same team of doctors and the same place where Joan Rivers went. I hope that there isn’t that much media camped out there and I hope that we will be able to get parking close to the door. I can’t believe honestly that Joan Rivers passed. She was one of my favorite people. I am not one that usually particularly cares for comedians in the sense that I never think that they are “funny” and such, but Joan was different. There was no one else like her. She was hilarious. I loved watching her on TV and everything.

Laughter is an instant mini-vacation. Smiling and laughing can have a positive effect on your well being, as it acts as the body’s natural painkillers and is something I definitely I need. I have also decided since Joan Rivers has made me laugh and smile so much, that I am going to read one of her books because not only will I hopefully enjoy it, but I am hoping that the laughing that I will get from her books will hopefully also better prepare me for surgery and make me stronger since laughing expands the lungs, stretches the muscles in the body. This exercises the body, replenishing the cells from a lungful of oxygen and gaining all the benefits of exercising the body.   Also… since I have been in such a rotten mood lately with everything happening, I figured what more appropriate book is there to read than Joan River’s book called “I Hate Everyone… Starting With Me!”

I have also been busy trying to learn how to put on makeup in a “professional” way. I hate the way I look and I will definitely not show my face unless I have makeup on. I am very embarrassed by the way I look because I am so emaciated and I am extremely pale. In fact, my dad always calls me “Snow White” because I am so pale. I hate my face because my skin literally sags on my protruding bones because I basically have lost all my muscle tone everywhere in my body including my face. Therefore, I am very self-conscious on the lines and wrinkles that are made on my face.

I used to be a person that loved to take pictures. However, now I will not even put up a picture unless I ‘airbrush’ it. Even with airbrushing I am not satisfied with it. But at least it is better than without. I also like to dress up as nice as I can be everyday by wearing makeup and nice clothing because not only do I like to feel as “normal” as can be, but I also believe that if you “look good” than you “feel good.” That was something that my grandma always instilled in me and she was right. In fact, I try to conceal how sick I am by dressing up as much as I can with makeup and clothing, and I must say that I do a good job. Most people don’t realize the extent to which I am so sick because of how much I push myself and how “good” I look with the makeup. Yet, who would think that beneath that beautiful façade is a person suffering and literally dying.  

10608636_10101262446189700_3565083655141302763_oSo I have been watching how to put on makeup in a more ‘professional’ way so that I can look my ultimate best. I must say that I have improved so much. I have been getting compliments like I have never gotten before. So that must mean something! I even gave my mom a makeover last weekend. It was a surprise to her. I must say that she did look so pretty after I gave her the makeover. What a difference it made!

Well… Yesterday was my dog’s birthday. He turned 9. However, since I didn’t get to really celebrate his birthday because I really wanted to take a birthday picture of him and get him a birthday bone and everything, I told him that we are celebrating his birthday today too. I love those ‘birthday’ bones and since you can only get it once a year because your birthday only comes once a year, I wanna get it for him. I can’t believe he is turning 9.

Speaking of birthdays… Dad’s birthday is next week. Yup… his birthday is September 9th. I really wish I could have made his birthday better. Hopefully next year I will be better and we can celebrate it BIG time. After all, he deserves nothing but the very best because he is the best dad in the world. He is not only my dad, but also my best friend, my superman, and my knight and shining armor. If it wasn’t for him… I definitely wouldn’t be here today. I owe him so much. He is the absolute best. He is one of the MAJOR reasons why I am holding on!!

Thanks again for all your support and encouragement. Again, I want to thank you for all that you have done and continue to do for me to keep me going. It definitely has not been an easy road and I really hope that I will be able to get the necessary treatments that I really need soon because I am seriously not going to make it much longer. If there is anything that you can do… whether it is to donate, spread the word of my website (www.gofundme.com/FallonMirsky) or even say a simple prayer… that would be much appreciated. Remember… no donation is ever too small and anything that you do is very much appreciated.

Thanks again for everything!

Love always,

Fallon

 

Leave a comment »

August 27, 2014

10548690_10101239971753650_3411997899923871008_o Hi-

 

I just wanted to write and let you know the absolute latest because so much has happened in the past few days. I was supposed to be leaving this week for the Cleveland Clinic, as I was scheduled for heart surgery and multiple appointments, but unfortunately due to finances and other events occurring, we had to cancel them and reschedule them. I only hope that I will be able to last long enough to be able to have all the surgeries that I need because now that these surgeries and appointments were delayed, it also delays the entire process. It pushes back getting my colon taken out and the transplant. Therefore, it means that it leaves me more time to get sicker, which is definitely something I can’t afford. Time is definitely not on my side at this point in time.

 

I am really suffering and really deteriorating, but unfortunately things are not working out like they should. I was really hoping that everything was going to go according to plan and I would be able to receive all the necessary surgeries that I would need and I would be on the road to recovery and getting my life back. But like always, I hit another huge hump in the road.

 

We are really suffering in the financial area. That is one of the main reasons why it was impossible to go to Cleveland Clinic this week. There is only so much money you can “charge” on a charge card and take out on loans. That is why I always ask for help because without the help of others, it is literally impossible to get well. Everything costs money!! I am surprised that they don’t even charge you for the air that you breathe. Anyway, since my medication, procedures, doctors, traveling expenses, etc. are so expensive; we really can’t afford it anymore on our own. That is why I am hoping that others will help spread the word of my website or help me “fundraise” so that I can receive the much-needed funds so that I can receive all this stuff that I need to survive.

 

As I am getting sicker and sicker, I have had to travel more and more to Cleveland Clinic. I also have to spend longer times there and I have to have more procedures and surgeries. Therefore, it is more important than ever to try to raise as much money as possible because we had a hard time affording all my medical treatment before. However, now that I am sicker than ever and I need to go to Cleveland more often and such… it is even worse. It even makes it harder because when we go to Cleveland, my family really doesn’t make any income whatsoever to pay the bills. Since my dad is always with me when I go to Cleveland, he is not available to work and bring in a salary. Although my mom stays back in New York to try to keep the business going, she can only keep the “office work” going by answering the calls, but in terms of jobs happening and bringing money in… it just isn’t possible. I am so scared that something is going to also happen to the business because there is only so much that my dad can stay away from the business because customers are not going to want to “wait” for him to return. When they want a service, they want it NOW!!

 

So if you can please help me to raise funds so that I can receive the lifesaving treatment that I need, I would extremely appreciate it. Whether it is by spreading word of my website (www.gofundme.com/FallonMirsky) or having a fundraiser, it would be much appreciated. If you have any questions, please feel free to contact me at Femirsky@gmail.com

 

In addition to the insufficient funds, I also developed a massive infection in my mouth and my jaw ended up caving in due to the osteonecrosis. Therefore, it really made a huge problem for the surgery that was supposed to take place on Monday. But even without the infection occurring and delaying the surgery, there would be no way that I could have the surgery because I wouldn’t be able to stay the length of time needed for the surgery because we didn’t have the money.

 

I was scheduled to have heart surgery and to have central lines placed this past Monday. This was all being done in preparation for the colon being taken out and then the transplant. The doctors also wanted to have central access to me because I am getting so sick and they wanted an “emergency” way to get stuff into me in case something should happen. They also felt it was a good idea because they were scared that with everything happening, I was going to get an infection or something due to all the multiple needle sticks and everything. Plus, they were hoping that with these lines, it would save me the trouble of having to be stuck all the time with needles because I can’t take the pain anymore and I am suffering enough. They also wanted the lines to give me medication and especially TPN. They were hoping to give me at least 2 weeks of TPN prior to getting the colon taken out so that I will be better nourished, which will have made me stronger for the operations. After all, these operations are extremely dangerous and intensive even for a normal person. So you can just imagine how dangerous and hard they will be for me when I am so fragile and everything is “magnified” for me.

 

The plan was that I would have the lines placed and then I would spend about a 2 weeks in the hospital getting used to the TPN. Then they said that they would allow me to go home for about 2 weeks while I continued to receive TPN and got a bit stronger for the operations. I would then return for the removal of the colon, which I would have to stay there for 3 weeks at that time. However, that was the plan only if I could tolerate the central lines and the TPN. If I couldn’t… I was stuck there until the surgery to have my colon removed, which was definitely something we couldn’t do because there was no way that we could afford for me to be there all that time. We didn’t even know how we were going to afford just the 2 weeks that we were going to have to stay there initially. There was no way we would be able to stay there longer.

 

If I wasn’t able to tolerate the lines or TPN, they said that I would have to remain in the hospital to have it done until I got the colon taken out. While I was in the hospital, I would be under Ketamine sedation to try to make me as comfortable as possible and that is why they would have to keep me there while the TPN did its work. Therefore, I would have to basically spend the entire 5 weeks that this entire process is going to take all at once instead of being able to divide it up and come home for a bit in between, which would also be time where my dad could have worked and we could have brought in some money from working.

 

5 weeks would have been the minimum that I was going to have to stay there. Either way it was going to have to come out to spending at least that amount of time there. It just mattered whether I was going to be allowed to come home in the middle or I had to stay there and it had to be done all at once. In addition, after the colon was taken out, it would determine how urgently I would have to have the transplant. If the small intestine were really badly affected, I would need the transplant sooner than ever. After all, I am being intoxicated and poisoned because of my severe gastroparesis. I am literally having poisons spilling into my bloodstream and entering my organs and brain. It is literally killing me. Something needs to be done and done fast because I am becoming intoxicated.

 

But even though the operation was cancelled, we were still planning on going to Cleveland tomorrow because we were scheduled to see pain management and endocrinology. However, even this has changed, as we are no longer leaving tomorrow. We are now scheduled to see pain management on September 24th because we are going to see my old doctor who is supposed to be the most ‘knowledgeable’ about my neurological illness.

 

We decided the trip on me was going to be way too much. The traveling is definitely too much, and it really takes a huge toll on me. In fact not only do I lose weight when I go which is definitely something that I can’t afford because I already weigh in the lower 60s and every pound is so crucial. Once I lose it… I can never gain it back. I’m so weak all the time and it is especially worse than ever. So since traveling makes me weaker… they wanted to make sure it was definitely worth it. It takes me over a week at least to bounce back after we come back.

 

I was originally given an appointment with another doctor because my old doctor was ‘retired’ and not seeing patients anymore. We were supposed to see this one doc in pain management and we decided that we are better off postponing because even though this doc was somewhat knowledgeable in my condition and everything… my old doctor is really the guru in my illness. To be honest, not many doctors know about my neurological illness. A lot of doctors claim that they do, but they really only know the basics. The doctor that I am seeing on the 24th actually is one of the founding fathers of my illness as he has done research in the area, publicized on it, and spoke about it. So we didn’t want to go to Cleveland and see a doctor that wasn’t as knowledgeable as he was and couldn’t really help me. You know? After all… I had more than the “normal” types of treatments that would typically be given for this illness. I need topnotch doctors because of how extreme my case is. So since my old doctor is just seeing patients one day a week and only seeing ‘old’ patients, we decided to cancel the current appointment that we had with the doctor tomorrow and go with him.

 

The only thing that I am a bit worried about in not going tomorrow is that I did have an appointment with the endocrinologist and I really honestly needed that appointment.  I have a pituitary tumor that needs to be handled and I also need a bone infusion badly because my bones are sooooo bad and basically crumbling. I’ve had to stop the bone infusion because my endocrinologist here literally got afraid because of the osteonecrosis. The doc said that I still should have it done but since it was the endocrinologist dispensing the infusion and literally bring held responsible… He of course wouldn’t do it. The osteonecrosis doc said that the benefits definitely outweigh the risks and told him how desperately I need this infusion but if course the endocrinologist wouldn’t do it. What do u expect from an old timer?? He was a chicken. So I had no luck whatsoever having it done here and desperately needed it because the bone infusion actually ‘builds’ bone and I was even still losing bone with the infusions… So u can just imagine how bad I’m doing these last two years without the infusion. I don’t want to even know or guess. They are so afraid that I’m going to get literally a life threatening fracture because of how fragile I am. I desperately need that infusion. All the docs say so but of course there’s no one here to do it because the endocrinologist here refuses to do it. So I was going to Cleveland to meet with this top endocrinologist. She was famous for not only the pituitary tumors but also for the infusion.

But we are really on the fence as to what to do about attending that appointment. My dad doesn’t know if it is honestly worth going for this appointment or postponing it until we come back on September 24th. My dad is scared we are going to go all that way and the doctor is not going to do that infusion after all. So he doesn’t wanna travel all that way for especially one day because it takes so much out of me and it’s not like we have the money to just ‘give out’ for nothing too. But of course they won’t give me an answer whether they will do it not do the infusion until AFTER they see me. So we don’t know what to do. I agree that it would suck to go all that way and pay all that money for them not to do it. But then again I desperately need it and they aren’t doing it here. They are ‘supposed’ to b doing it there but who knows once they see me and goes over everything. U know what they say ahead of time and then what they say when you actually see them are two different things.

So like I said… we are thinking of postponing the appointment to when we come back for the pain management appointment because this way we kill two birds at the same time and don’t just make a trip for one day. But what stinks is that if we meet with the doc and she wants certain testing prior to the infusion… I won’t b able to really get it. At least if I went this time and I needed testing or something… I could get all that is needed and then also have the infusion completed when I come for the appointment on the 24th instead of then having to wait and come back AGAIN.

I already think she’s going to want another DEXA SCAN before proceeding because she said to bring all records including DEXA SCANS within 2 years. However, I did have one, but I think it was actually 2 years ago. So I bet she’s going to want an updates one especially with my condition and everything before proceeding. So I doubt that even if I went this week to Cleveland that she would do it because she would need updated records, but at least I would be able to then know the plan and have the necessary testing done. And then when I come back on the 24th at least I can have it then.

So it appears that we are going to be putting off both appointments until September 24th. However, it is also contingent on when I have the surgery for my osteonecrosis and infection in mouth and teeth because that takes priority. Not only am I really suffering with this as it is difficult to eat and drink besides it hurting just in general, but it is holding up all the other crucial surgeries that I desperately need such as the heart surgery, placing of the lines, the colon coming out, and the transplant. However, I wont know the exact date of that surgery until Tuesday because my surgeon is on vacation.

Isn’t it amazing that things always happen around holidays and weekends? I find that so much always takes place during that time because there isn’t anyone around!! Nothing ever happens on like a Monday when you have a whole week to work things out. That would be too simple!!

I am still suffering with my right arm being “dead”! I guess it is getting better, but it is definitely still annoying and not the same.  I am just hoping that it will still continue to improve and hoping it will disappear.  It never happened in the right arm before.  Usually it only happened in the left arm and thank goodness it always improved.  We don’t know exactly what causes it, but we think it has to do with compression of the nerves or something since I don’t have any “muscle” or anything protecting it.  My arm and hand literally go completely numb like when it “falls asleep.”  However, it never really ‘wakes up.’ Usually in the past when it happened in the left hand, it was completely numb and dead.  At least in the right hand it wasn’t as numb and it is basically the feeling of when it ‘starts’ to wake up and has the tingly and soughta week feeling going through it.  It is just so annoying.  

So I guess in the meantime I just gotta hang in there. I just hope that these surgeries come soon and that they work because I am suffering so much. I am deteriorating like crazy and I don’t know honestly how much longer I can hold on. I really want my life back already. I am tired of being sick.

On a side note, I was contacted by the “Dr. Oz” show to possibly be on it. It isn’t a definite yet, but it is a possibility. They took down all my information and I am waiting to hear from them. I am not counting my chickens before they hatch because I have been disappointed too many times in the past. But I will definitely keep you posted.

Well… I guess I will be going. If you have any suggestions about raising money or can help out in any way, I would really appreciate it. Please continue to pray for me. I can’t tell you how much I appreciate all the encouragement and support. I wouldn’t have made it this far without you. Doctors are so impressed that I am still alive because by medical standards there should be no way that it is possible. However, I am the energizer bunny rabbit and therefore I “keep going and going and going.” Plus it is through people like you that get me over the humps and keep me going as well! Thanks for traveling this journey with me and standing by my side.

- Fallon

 

 

 

 

 

Leave a comment »

August 20, 2014

10550008_10101241323315110_1859173337889895828_oHi-

Well… I know it has been awhile, but I figured that I would write a bit and say what has been happening and what is in the mix. Gosh… there is so much happening lately that my head is literally spinning! I don’t know if I am coming or going… and I mean that literally. Everything is so up in the air.

Things are continuing to worsen. I don’t know honestly what is going to happen. I just know one thing… I am definitely running out of time and I desperately need help ASAP. I am rapidly deteriorating and it is getting to the point where my deteriorating is starting to snowball out of control. We really need to stop it or if nothing else… at least slows it down!!

The doctors honestly don’t know how I am still living. To tell you the truth, they don’t even know how I made it this far. I don’t even know the answer to that. The doctors literally call me a medical miracle because there is really no possible way that I should be “living” right now. I am literally less than 70 pounds, my bloods are horrible, I have poisons running through my blood stream, my organs are failing, I can’t eat or drink, etc. My blood pressure is basically also nonexistent as it only reads like 70/40 and I have severe bradycardia with a heart rate of in the 40s.  Yet, I am still alive! I tell the doctors that I defying all odds because I have an excellent support system. It is people like you that help me get through this. If it weren’t for people like you, I definitely wouldn’t have made it this far and have been able to keep going. Thank you for helping to keep going and to pushing onward.

10467107_10101241325041650_3208290591265744687_oBut the truth is that I really don’t know how much longer I can hold on. I am really sick and deteriorating faster than ever. I desperately need help but unfortunately it is dependent on so many factors. The ability to get better goes way beyond just being in my own hands. I desperately need the help of others. Unfortunately so much of getting better depends on money because I need surgeries, treatments, procedures, medications, etc. that we just can’t pay for on our own. I desperately need funds donated or fundraisers held to help me raise the much-needed money so that I can get these lifesaving measures before it is too late. Therefore, if you can please help me in any way possible… whether it is by spreading the word of my website to donate (www.gofundme.com/FallonMirsky), fundraise, etc. I would really appreciate. If you have any questions or suggestions, please don’t hesitate to contact me at Femirsky@gmail.com.

I have been thinking of all different ways to find ways to raise money, but unfortunately I am all out of ideas. If only I could have something go “viral” like the fundraiser for ALS is doing with the “icewater” challenge. I only wish I could have something like that happen to me. To be honest, I am feeling a little down about that fundraiser for ALS too. I would have loved to be part of it, but unfortunately due to my illness, I am not able to partake in the icewater challenge even if someone “challenges” me. I am too hypersensitive and I wouldn’t be able to tolerate water (especially coldwater) being poured over me. I only wish I was normal like other people.

As I told you in previous messages, I was going to the Cleveland Clinic to have my colon taken out and to have a multivisceral transplant. My GI system is completely “dead” and unfortunately, I have no other choice but to have my colon taken out and to have the transplant. Not only is nothing passing through my system, but I have all these toxins also pouring out of my GI system and entering my bloodstream. I am literally being intoxicated and poisoned, as it is going into all my organs and even my brain. I really need to handle this because not only is it causing me not to eat because there is no movement in my GI system and therefore I look like an emaciated skeleton, but it is literally poisoning my entire body.

There, the colon has to be removed as soon as possible and then once it is removed, it will determine how FAST and urgent the transplant will have to occur. If the toxins and poisons are mainly just coming from the colon, then I will have more time because that affected organ will have been removed. Yet, if they find that the small intestines are badly affected, they will have to jump on it immediately go for the transplant sooner rather than later. This is very major and dangerous surgery. In fact these surgeries are basically the most dangerous that a person can have. It is the most dangerous transplant by far, as I will need a new stomach, small and large intestine, pancreas, liver and spleen. Only 6 hospitals in the country perform this crucial and life-threatening operation… Cleveland Clinic being one of them! However, since I will need to have so many surgeries procedures and since I will need to have to have them take place in Cleveland, Ohio, I will need all the help I can get from others in getting funds to pay for all this. After all, if I don’t have the funds, I won’t be able to get these procedures because no one is going to do any of this stuff for ‘free’ and I still have to worry about traveling and living expenses while I am there especially since I will be there for awhile and my father will not be able to work since he will have to be my caretaker while I am there. So we will have no money being made and brought into the family.

I was all set to start my journey into having these surgeries this upcoming week. The doctors also wanted to work with my lungs because I am literally aspirating and drowning in my fluids and they want to make them strong and clean for surgery. I literally just got back from Cleveland Clinic a few days ago and it was decided that it was urgent that all this stuff was needed immediately. Yet, I still needed to have one more operation before I could have the colon taken out. I would need to have heart surgery and surgery to put central lines and ports in. This way they would have central access to me during the operation as well as when I am not in the operation.

The doctors know how “sick” I am and they really want to get some central lines into me. They want to put these central lines in me not only to provide central access for during the operation, but I desperately need it because they want to use it to give me nutrients, give and draw blood, give meds, etc. The doctors don’t want to keep sticking me with needles anymore because not only am I super sensitive and it is extremely painful, but they are scared that with all the needlesticks that I am going to get an infection and that is the last thing that we need right now. If I were to get an infection, it would be a disaster because my body is so depleted and knocked down that I would easily die. I am glad though that they will be able to give me meds though through the line because I take so many pills daily that I can barely swallow them. I take over 50 pills daily and it is literally impossible to swallow them. In fact, they are always getting stuck in my throat because I don’t even have the “swallowing” mechanism in my esophagus. There are so many times that doctors have literally had to go in and actually remove the pills because they have just stayed in the esophagus. In addition, pills don’t even get dissolved anymore. I can literally take pills and then 12 hours later when I throw up, I can throw them up whole, which means they were not absorbed!! So at least by having these lines I will be able to have an easier time taking them and my body will definitely be able to absorb them.

The doctors are also planning on trying to build me up a bit for the surgery through the central lines as well. Since I weigh less than 70 lbs., I am really in no place to have surgery. They are really scared that I won’t be able to recover and heal. I am really a high-risk to have surgery and therefore, they want to try to give me TPN (total parental nutrition) to try to build me up. I have had TPN in the past and have failed it. However, they are going to try it again through these central lines in hope that it will make a difference. However, TPN only is good temporarily. You can’t live on TPN forever.

As of right now, the doctors feel that the only way to “buy” time is through TPN. The doctors feel that I will never be able to gain weight or ever become normal weight again… even with the colon coming out. They said that I am so far behind that it will literally be impossible to ever weigh “normal” again. They would love for me to weigh in the 90s and even 100 lbs. But they doubt that is ever going to happen unless I get that transplant. But in the meantime, they say that TPN is my only lifeline that will buy me time. Yet, it is only temporary and therefore, I only have a short amount of time to have it and therefore, we have to have the colon ready to come out and the transplant ready to happen so that whatever the TPN helps I won’t lose when we have to stop it. After all, central lines are really dangerous because each year 80,000 central line bloodstream infections occur.

I have a choice of which type of line I want. I still haven’t made my decision which one I prefer because I want one that will not only work well, but I want one that will “look good” as well. I know I shouldn’t be worried about the “looks” of something, but it is important to me. I still want to look as “normal” as possible and I don’t want to look sick. No matter how sick I am, I still wake up every day and get dressed as if I am not sick. I get fully dressed with makeup and nice clothing just as a normal person would because I truly believe that if you “look good” then you will “feel good.” That is why when I go out, people don’t necessarily realize how truly sick I am because I mask it. I mask it both physically and emotionally. Yet behind that façade is a person who is dying inside and who desperately needs help. I am crying in the inside, but I won’t let others see my tears.

I have a choice between 3 lines. The first line is the one that goes into the jugular vein and extends to the heart (specifically the superior or inferior vena cavas). The second line is called a “Hickman” line. This line goes into the subclavicle and goes into the heart that way. Those two lines are much more intensive than the third. The third line is in the arm, which is called a PICC line. It is placed into a vein and travels into the heart and into the vena cava until it reaches the right atrium. All these central lines are risky, as the Centers for Disease Control and Prevention say that the prevalence of central line-associated bloodstream infections results in about 62,000 deaths per year.

So I am supposed to head to Cleveland on Sunday to have the heart surgery and to have one of the above central lines placed in me. The doctors wanted to have this done ASAP because like I said before, I am really deteriorating and they wanted to make sure that they had central access to me in case of an emergency. They also wanted to build me up for the surgery to have the colon taken out, which needed to happen ASAP because the colon was literally poisoning me and causing me to become intoxicated! The colon removal is scheduled for September 17th. The doctors already said I will have to be there for 14 days prior to prepare me for the surgery, then I will be hospitalized for about 10 days after the surgery, and then I will have to remain in Cleveland for another week at least to make sure that everything is ok before they send me home. Then I will have to worry about the transplant afterwards. So we don’t know how on earth we are going to do this as well because not only are we having a difficult time paying for the actual procedures and traveling expenses, but my dad won’t be working all this time and we won’t be having an income. I am so worried that the business that my dad owns will have to end up being close down and something will happen to our house at home because there will be no money coming in to pay the pills. That is why I am pleading for help. I know I sound like a “broken record,” but it is so important!

However, we don’t know what is going to happen now with the surgery on Monday to have the lines placed at the Cleveland Clinic because I have a massive infection in my jaw and teeth that needs to be taken care of. We knew that I had a problem on the right side of my mouth, but unfortunately, the other day the left side of my mouth caved in as well. I have severe osteonecrosis and therefore, the bone is dying. So, I desperately need to have surgery done ASAP to take care of this infection and also to repair the teeth and bone that has caved in.

I knew that the other side of my mouth was going to cave. I felt something really strange happening the day before. Then when the bones and the teeth fell out, it was all black and that proved it was all ‘dead’!

So we are not sure exactly what is going to happen. I am waiting to hear when the surgery will be scheduled for my mouth. The surgery for my mouth will be done here and I am really scared because I don’t know how we are going to afford it. The last time this happened, it ended up costing us nearly $7,000. Even though the hospital was covered by the insurance, the surgeon was not and the only ones that perform this kind of surgery are not covered. So I have no choice but to pay out-of-pocket for this surgery because there aren’t other surgeons that are “covered” that do this surgery. To think now that it is so much worse too. I hate to think how much this is going to cost me.

I am hoping to hear sometime tomorrow about when the surgery for my mouth will be. I will then know then what will be happening with the upcoming surgeries at the Cleveland Clinic. After all, these surgeries at the Clinic are really crucial and really important that it happens ASAP.

However, even if the surgery is cancelled in Cleveland next week to do the heart surgery and put the ports in, I will still be heading there on Wednesday because we have a meeting with docs on Thursday. We had this appointments scheduled for 2 months and there is no way that we are going to miss it. It is crucial also that we see this doctor because this is the doctor who will be helping to manage my neurological condition and the pain that I am having from it. After all, I suffer 24/7 from the most severe pain that you can imagine. So it appears either way that I will be in Cleveland next week. It just depends when we are going and how long we will be down there for.

So…. As you can see there is so much happening. I am still going for surgery every Friday to be ‘cleaned’ out for my intestines. I desperately need this because not only does it make me more comfortable, but it also is removing the toxins and poisons that are spreading throughout my body and killing me. It is sad that I look forward to Fridays because of this surgery. But, it really does help because otherwise I walk around feeling and looking like I am 9 months pregnant and ready to give birth.

At least I have a ketamine coma in the morning. With everything that is happening, I am so relieved that I have it because at least I will be out of my misery for a bit. If I could live in a ketamine coma forever until I was fixed, I probably would. But unfortunately that isn’t possible. I desperately need to get to Mexico so that I can get the amount of ketamine that I need that can actually potentially “cure” me. Even though I can get ketamine in the US, I can’t get the amount that I really need because it is not FDA approved. But like always… everything comes with a cost and therefore I can’t have it done because it costs way too much money, as it costs over $100,000. To think… there is a treatment out there that can potentially “Cure” me and I can’t get it because I can’t afford it. It really hurts to know that. It is like having holding a bone in front of a dog and not letting him have it. 

So that appears all that is happening. I will let you know more when I know more. Just wanted to write and let you know all that is happening so far. I can’t believe that the summer is basically over. It really hasn’t been a warm summer. I hope that doesn’t mean that it is going to be a bad winter. I can’t stand a cold winter. As it is the winter basically just left a little whole ago; it was the longest winter ever.

So many upcoming plans are going to be happening besides the surgeries. I have my dad’s birthday coming up as well as my dog’s birthday. My dog will be turning 9 and my dad will be 61. I really want to make my dad’s birthday as special as can be because he deserves it. He is the ultimate dad!! He is not only my dad, but my “best friend,” superman, and knight and shining armor!! I definitely would not have made it this far without him.

Thanks again for all your support. Until next time!

 

Love,
Fallon

 

 

1 Comment »

Follow

Get every new post delivered to your Inbox.

Join 572 other followers