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
Dysautonomia 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.
My 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.
However, 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.
Halloween 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.