FALLON MIRSKY

Please help SAVE MY LIFE!

June 25, 2014

10496120_10101179281881640_5560678610146874629_oHey-

Just got some big news today so figured that I would share. Also figured I would share all that has happened sine I have been home!

Just heard the news that I am one more step closer to having the HUGE operation in California to have my colon removed. Yup… the doctor called today and told me that the date has been set for the presurgical testing and for the final exploratory surgery. The date is July 28th. However, I really need help in raising money for this operation because we cannot afford it by ourselves.

Even though this operation is covered by the insurance to a point, it is still hugely expensive on our part and we are unable to afford it. We still have to worry about the copayments, deductibles, traveling expenses, doctor fees, living expenses while we are there, etc. After all, just because the actual surgery is somewhat covered, I still have to make multiple trips there for testing and other procedures, tests, etc. I also have copayments that I have to pay, as well as deductibles. In addition, just because the surgery is covered, the doctor fees are not. So… in order for this all to happen, I really need help from others.

Even though I need this operation immediately and as soon as possible because my life depends on it and I am rapidly deteriorating, I am kind of glad that it is being put off until the 28th because this way it will give me time to hopefully raise some money. As of now, we are unable to afford going back there, as we just returned from the previous trip and money is of course tight. We can’t even afford the appointments that I have in New York or the medication that I need to take. So… this will give me some time to save some money. Therefore, I have one month to raise as much money as possible because that is when I leave. I really need to raise a lot because once I get back from the next trip, I will only have about 1 ½ weeks to 2 weeks before I will have to return again to California for the massive surgery to remove the entire colon. At that time I will have to spend at least 2 weeks there, so that trip will definitely not be inexpensive.   So if you have any ideas about fundraising, please contact me. Please also spread the word that help is desperately needed because I need help from others if I am going to be able to have this surgery. Please spread the word to donate at www.gofundme.com/fallonmirsky, as even the littlest amount is appreciated.

I really need to have this surgery done as soon as possible though. It is weird thinking that the very thing that is taking place to the organ that is killing me is also in a way “saving” my life at the same time. I have a twist in my colon and an intussusception that a normal person would normally die from. You can’t live with a twist or an intussusception in your colon. However, since my colon is so over dilated and floppy, it is able to compensate and I am able to manage to live with it. However, since it is massive in size because of the dilation, it is putting enormous pressure on my other organs and it is shutting down those organs as well. So not only is it saving my life, but also killing me at the same time. So I soughta have a “safety net” for a little bit. Hopefully it won’t break until I have the surgery.

My colon is completely shot. It is so massive in size and dilated way too much. When I went for the last exploratory surgery, it literally took the doctor an hour to get to my colon because it was so over dilated and floppy. The whole entire room had to even assist the doctor in order for him to get to it. The doctors can’t wait to actually see this colon on the outside and actually get to examine it when it comes out. They already claimed it. I told the doctor though that I want a picture of it when it comes out.

When I go back for in the end of July, I will have to go for another test, which will be another exploratory surgery and I will also have presurgical testing. During the exploratory surgery, it will be a complex procedure because it will incorporate 3 depts. scrubbing in, as they will not only be “exploring” but they are going to be also putting in nuclear radioactive stuff into my cecum and tracing things in my colon as well. But at least when all is done with this trip, all will be ready for the surgery to have the colon removed.

I am not going to lie… I am really nervous. I really don’t want to have a bag and really scared that it is going to be permanent. Even though the doctors are hoping it will only be temporary and last only 6-8 weeks, I am petrified that it will have to remain longer. Even having the bag for that length of time is freaking me out. I know I have been strong throughout this entire disease and such, but I don’t think that I am going to make it through this part. I think I finally met my breaking point. I don’t think that I will be strong enough to undertake this part.

But I just gotta go. Gotta leave for the hospital, as I am undergoing ketamine today. Thank goodness because I really need it. Thanks again for all your support. Again, if you can please pass on that donations are much needed at www.gofundme.com/FallomMirsky, I would really appreciate it.

Love,

Fallon

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June 19, 2014

10446159_10101180674016790_1674656976935039610_oHi!

Well another day has come and gone. Wow. It has been a busy 24 hours. Even though I just told you tons of info, so much more has happened within the past 24 hours. I can’t believe it.

Well… I went for the exploratory surgery this morning. It was very long because they actually got to “see” what they kind of speculated and knew. Today’s surgery just confirmed everything that doctors really were thinking and it also gave the doctors a glimpse as to how bad things really are with me. They knew that it was bad, but they didn’t realize it was this bad.

What a long and exhausting day we had today. I am so glad that I have my doctors here at Cedar-Sinai Hospital in Los Angeles because they are simply the best. No other doctors have been able to discover and to do what they are able to do. Plus, their knowledge and bedside manners are simply untouchable. They have such superb knowledge about my condition and they treat me so well. I have never met doctors that are willing so much to take the extra mile to make sure things are done as good as can be or willing to make me as comfortable as possible. I have never met a nicer team of doctors and I must say that I had the best anesthesiologist today, doctors, and nurses. Everyone at Cedars-Sinai is just simply amazing.

Anyway… I went for the exploratory surgery and it actually was much longer than expected. When the doctors got inside, it took them about an hour just to get to my colon because my colon was so dilated. It took all the efforts of the nurses as well in order to get to the colon because it was a huge task. It definitely wasn’t easy.

After getting to the colon though the doctor saw how bad it really was inside. My intestines and rectum are extremely dilated, which is definitely not a good thing. However, it is actually saving my life right now because they found out that I do have a twist or an intussusception in the colon and the only reason I am able to live with it is because of how dilated the colon is. Most people would be dead by now. People that have twists in their colons or intussusception die because their intestines are literally being strangled and there is a huge obstruction. Yet, in my case, things are able to navigate around because of how dilated my intestines really are.

Yet, in the real world this dilation is not good at all. It is this dilation that is in fact killing me and is caused because my intestines are not functioning. The dilation is definitely not normal and even though it might temporarily be saving my life because of the intussusception and twist that is occurring, it is also killing me at the same time because it is putting extreme pressure on my other organs and shutting them down. The doctors saw on the x-rays how dilated my colon was, but when they got inside, it was a different story. That is why there is no peristalsis and they are completely filled up with fecal matter that is in the viscous stage. I can’t expel anything that is in the colon because of how dilated they are.

It is quite impressive how dilated my colon is in comparison to the rest of me. I am only weighing in the 60s and extremely tiny and yet, I have this huge dilated colon in me. The doctors have already put in “dibs” for when it comes out that they want to have it and test it to see exactly what happened to it. They want to run tests and do research on it to actually discover exactly what is wrong with it and everything. Everyone can’t wait for that colon to come out and to get a clear view of what it looks like. I have to say I am included in that number. I am also wondering what my colon looks like. With all that has been happening and all that they have been talking about, I am really wondering how big and dilated my colon actually is and what it really looks like. I guess we will soon find out though because the surgery to remove it will be very soon.

The doctor spoke to us about a lot of things today. We found out how risky this upcoming surgery really is. I knew it was risky and dangerous, but I didn’t quite realize how big it really was. The doctors are extremely worried because the colon has the most bacteria in the entire body.   Therefore, the doctors are really worried that some of the bacteria are going to leak out during the operation or during the recovery process, which I definitely can’t afford to happen. I have absolutely no “fighting” power whatsoever. If that should happen, I probably will die. Therefore, the doctors said that they have to be super extra careful to not let any of the bacteria escape when they remove the colon and they have to make sure that there are no problems afterwards like leaks and such. That is one of the reasons why they are giving me a “bag” temporarily. They rather my body heal and calm down then possibly have another problem because I won’t be able to overcome it if that should happen.

The doctors are also worried about my weight. I don’t weigh a lot to begin with, as I only weigh in the 60s. However, when they remove the colon, I will of course also lose more weight. Not only will I lose the actual weight of the colon, which is about 4-5 pounds, but also I will not be able to hold fecal matter or anything else, which can also add a lot of weight onto a person. So if I am now only weighing in the 60s, the doctors are really wondering how little I truly will weigh when everything is out of me. I already don’t have any wiggle room and every ounce is crucial to me. I can’t afford to be any less, but they know it is going to happen.

In addition, when the colon comes out I will have to worry about dehydrating and even losing more weight. Since I won’t have a colon, I won’t have a place that will be able to “hold” food and absorb the food and water. Therefore, when I eat or drink, it will most likely go right through me. So from not living in the bathroom now because my intestines and GI system is paralyzed, I will have to go to the bathroom about 8-10 times a day. It really will be a night/day difference.

10448487_10101180674241340_9218017466359896461_oWhen I came out of surgery, they had a hard time warming my body temperature up due to the autonomic dysfunction. Even though the doctors tried everything in their powers to make me as comfortable as possible through the operation and tried their hardest not to stir up the autonomic dysfunction, it still happened. So they ended up having to wrap me up in blankets. However, since I am unable to really be touched either because of the extreme pain, they also had to keep giving me lots of pain medication such as Dilaudid to try to help control the astronomical amount of pain that I was soaring through my body.

So that my intestines don’t receive all the attention, my esophagus also is causing problems. During the exploratory surgery today, they also took a glance at my esophagus and they also ran some tests as well on it. It turns out that my esophagus isn’t functioning, as it should. We kind of knew that already, but now we have the hardcore evidence to prove it.

The doctors wanted to do this test yesterday, but they couldn’t insert the probes. I wouldn’t hold still and therefore, they decided that they would insert the probes when I was under anesthesia for the exploratory surgery. So I woke up with the painful thing coming out of my nose.

It turns out that my esophagus is not functioning, as it should be. Therefore, I am having difficulty swallowing anything, which includes water. In fact, anything besides water is basically impossible to go down. There is basically no peristalsis, which is the mechanism that the esophagus does to get the food/drinks down in the lower esophagus. In fact, there are even times where my esophagus does the reverse and it brings it back upward instead of continuing it towards my stomach.

10497864_10101180674870080_2361710526553346477_oJust as the colon is dilated, so is the esophagus. The esophagus is very lax and lost its peristalsis, and that is why I am having difficulty swallowing. I can barely have any liquids and even when the doctors gave me baby food, it showed that I couldn’t tolerate it. So, the doctors are really having their hands full on what to do with me because I am literally a huge mess. This is the reason why things don’t go down and also why I am aspirating.

The doctors said that they could do surgery to “tighten” things up in the esophagus, but it would mean that it would be even more difficult to eat, which would not be in my best interest at this time. Therefore, the doctors decided that since there is so much wrong with me at the current moment, we are just going to focus on one thing at a time so that we don’t “rock the boat” too much at one time. We don’t want to stir up things too much that things get too out of control that it ends up being a disaster.

So in the meantime, the doctors are just going to hope that it doesn’t worsen and we are going to ‘watch’ the esophagus to make sure things don’t worsen. The doctors told me that when I eat that I have to basically stand up because I need gravity to work on me in order to bring the food down since the esophagus isn’t working to produce peristalsis, which is the body’s way of bringing food down. In addition, I cannot eat or drink a lot because the sphincters are loose and the muscles are not strong enough to keep things down. I can only have slushies and liquids in the minimal amount. Since it is so important for me to eat and drink because of how much I weigh and also because they don’t want me to be dehydrated, they said I should be sipping and taking very small bites of food all throughout the day. In fact, they said that I can’t tolerate any large meals whatsoever and whatever I eat basically just sits in my esophagus. One shrimp is enough to fill up my entire esophagus because it can’t pass down. That is why when I did have that one shrimp, the doctors were able to remove it, as it was not digested or anything.

My dad and I also spoke to the doctor about getting the “bag,” which I am totally fearful of. I will have to get special belts so I won’t have to worry about my bag getting in the way of my life. In addition, the belts protect the colostomy bag, securely holding it up and against your body so there is no fear your pouch might get pulled off from your stoma appliance or snagged if it hangs down. The only problem is of course that they do of course cost money, which is something that we don’t have at the moment and an added expense to the pot. All I ever hear is “money, money, money!” I wonder what this world would be like if money didn’t exist. Why does everything have to cost money and revolve around it?

I am a total mess. I so tired of fighting and I am so tired of hearing bad news. Sometimes I wonder if it isn’t better just to give up already. But then I remember all the stuff that I overcame already and how much I really want to become that doctor, so I keep pushing on. I am not going to lie… this is definitely not easy. In fact, it is getting harder and harder each day. But knowing that I have the support of others I have to say really makes a HUGE difference.

10333790_10101180965542570_8913864716531019527_oThank goodness that I have my dad with me by my side to hold my hand. I couldn’t have asked for anyone better than my dad. Not only is he my dad, but also he is my very best friend. He always makes the sun some out on those gloomy days. In fact, he held my hand throughout the entire procedure with the esophagus and was with me at my bedside before and after I went into the OR. After the long day of surgery, we got to spend the night watching a movie in the hotel room. It was so nice to just be able to watch a movie with him. We watched the new movie that just came out called EDGE OF TOMORROW. It was pretty good, but I expected it to be better than it was.

Well… tomorrow morning is one more test, which is a 5-hour test and then it is home for me for a bit. We are taking the red-eye home tomorrow night and I really can’t wait to get home. Of course we will only be home for a little while because we will have to return shortly to California for another exploratory surgery and pre-surgical testing. Then it will be time for the massive surgery to take place, which will be when they actually remove the entire colon. Its going to be one long trip home tomorrow because the nights are usually the worst times for me because that is when the pain is the absolute worst. However, hopefully it won’t be so bad and hopefully with the usage of medication and everything, the trip home won’t be so unbearable.

Well… that is about all that is right now. One more day in California. I really do love it here. If I could pick any place to live, it definitely would be here.

Thanks again for all your continued support. I can’t tell you enough how much it means to me. I definitely wouldn’t be here today without the support and encouragement of others. Please continue to pray and spread the word of my website so that I can receive the appropriate treatment that I need in order to live.

Best,

Fallon

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June 18, 2014

10496120_10101179281881640_5560678610146874629_oHi-

Well… we are finally in Cali! Yup… We finally made it. I have been extremely ill, but at least I have built up enough strength right now to write. It has been an extremely difficult 48 hours. A lot has occurred in the last 48 hours. It was a very difficult trip to California, as I got extremely ill. I also met with some of the doctors on my team and found out some important information! So the game plan is pretty much is set. So not only am I ill from the traveling, but I am not going to lie, but I am having a hard time dealing with what I have learned so far while I have been here in Cali.

The trip to California was very hard on me this time. Going across country is not easy for me in any aspect whatsoever and it really is a shame that it has to occur because there is no help closer to home. Unfortunately there are no doctors or treatments close to home even though I live in New York and you would think that it would have the BEST hospitals and doctors that there are. However, when you are suffering from a rare and life-threatening illness that is so specialized, you really have to do whatever you can to get the appropriate treatment that is needed and for me that requires going across the country to Cedar-Sinai Hospital in California. The only problem is that it is definitely not an easy trip physically on my body nor is it an easy trip on pocket financially. We have to worry about the traveling expenses, as we have to travel across the country into order to receive the treatment that is needed to save my life.

It is a shame that the best doctors to save my life are across the country. But, you do what you gotta do in order to live. When I asked my current New York doctors why they don’t exist in New York, they give me the answer that the reason they don’t come to New York and exist is because New York is just way too “expensive.” To do the research and live… it is just way to expensive. Since my disease is so rare and specialize, the doctors that are needed to treat me are only found at top research hospitals such as in California. That is why we go to Cedar-Sinai Hospital in California.

Please help to gather funds to help my family and me, as my dad is the one who travels with me and therefore is unable to work during this time and bring an income. Please pray that I will beat this because I am such a fighter! I am a very bubbly, energetic, captivating girl who really wants to make a difference in the world! I have the ambition to become a doctor and to help others so that they don’t have to go through what I am going through! Anyone who meets me would be so captivated by my generosity and smile!

Well… it really has been a difficult trip on me. We really didn’t know if we were going to be able to even go until last minute because of the finances. We really need help in that area because we are struggling like you wouldn’t believe. It is literally snowballing out of control. If it wasn’t for the very kind donations received as well as the price adjustments that were again redone by the hotels and doctors, we would have never been able to come here. It is really a shame too because I desperately needed to be here. It was imperative and urgent for me to come because my life literally depended on it. I am just afraid that if I don’t continue to receive donations, I won’t be able to seek the treatment that I need and continue with the plan that is set in motion. So I am pleading for your help. If you can do anything to help me… whether it is even just to simply spread the word of my fundraising website (www.gofundme.com/FallonMirsky), I would appreciate it.

10475485_10101179218832990_3722731600867313923_oI really gave my dad a huge scare when we got to California. I was extremely weak and sick when I got to Cali. I was so sick and weak that they literally couldn’t move me or wake me up for like 24 hours. I was out cold. My autonomic dysfunction was going haywire, as I was breaking into cold sweats and hot flashes, but of course I couldn’t actually ‘sweat’ because I lost that function because of the illness. We really thought that we were going to end up having to call an ambulance, but like always… I held on and pulled through. I knew something wasn’t right when we were packing for the trip, as my intestines has a bulge in it, but I just chucked it up to being “part of my illness” and thought it would “pass.” Well… it didn’t and it only worsened on the plane. In fact, it worsened so much on the plane traveling that I became so weak that I could barely keep my eyes open and my head up. The flight attendants even made remarks to my dad about the way I looked.

10465441_10101178763535410_7546495833126873334_oI have the best dad in the world though. He always makes me smile and always is there to hold my hand when the chips are down. In fact, when I was so sick when we arrived in California, not only did he take great are of me, but he found a rose and put it in a cup and brought it into the room for me to keep at my bedside. It was simply gorgeous and one of the nicest things someone has ever done for me. He definitely surprised me. He is the best.

No sooner did we arrive in California, but I received bad news. I had literally just got off the plane and was waiting for my baggage when the phone rang from the surgeon’s office to say that the surgeon was not on my insurance plan, and they wanted to know if I still wanted to see the doctor. Are they kidding? Even if I saw the doctor, what good would that do me because that doctor would not be able to do the surgery at all because he is not on my insurance plan. This would mean that the surgery would easily cost me hundreds of thousands of dollars because the surgeon wasn’t included. No way could I afford that. I can’t believe that the office even asked if I still wanted to see the doctor. I was literally freaking out because it was as if I made this journey across the country now for nothing because the surgeon couldn’t see me and I was already feeling really ill. So I called my head doctor and literally freaked out on him.

I was honestly ready to turn around to go home because this trip was going to be worthless if I couldn’t see a surgeon. I mean the whole point of this trip was to see a surgeon and to get surgery. So when I called my doctor, he investigated and found another great doctor to do the surgery. It turns out that barely any doctors that can do the surgery that I require take my insurance. We have the worst insurance plan. I mean it is a great insurance plan for the average person, but for someone as sick as me, I really need to have a better insurance plan and unfortunately we can’t afford it. We already paying top dollar on health insurance as it is and there is no way that we can afford a ‘better’ insurance. But honestly… there are a lot of worst insurance plans, so I shouldn’t complain so much because it can always be worse.

Luckily my doctor was able to find a doctor willing to take on my case and willing to take my insurance. Of course I am not going to be fully covered and therefore I will need to come up with copays, deductibles, and other amounts, but at least he is willing to take my insurance to a point, which will help a lot. My illness and this surgery will cost so much money that I will need as much help that I can get. I need the insurance company to pay as much as possible because I really can’t afford anything. So it is really important to raise money in the very next few weeks and as soon as possible because even though I do have the insurance paying for the surgery somewhat, there is still so much that I will have to pay for. Not only do I have to worry about the traveling expenses, but also I have to worry about the co-payments, deductibles, and all the funds the insurance isn’t covering… which are a lot. After meeting with the doctors today, I also found out that I will be having to make one more trip to California prior to the massive surgery to have one more “minor” surgery and to have pre-surgical testing. So I really need as much help as possible if this is all going to happen.

Well… I met with the doctors today and had some tests (to see how well my rectum and esophagus functioned).  Well, actually tomorrow more is like a “exploratory surgery” in preparation of the more major surgery that is yet to come.  I also have one more test to do because they tried to do it today but because of my illness and such, they couldn’t do it. So they thought that they would do it after I had the surgery tomorrow because it entailed having a catheter inserted like an Naso-gastric tube and I couldn’t tolerate it.  They figured that they would do it after the surgery instead because they would insert the tube while I was “under” sedation instead of having me awake while they were inserted it like they were doing today.  By doing all these testing and exploratory surgeries, they are mapping out exactly what they are going to be doing.

They think that the reason that I am filling up with fluids so much and ‘drowning’ in my fluids is because I am aspirating as a result of my esophagus not working. They are thinking that I might very well need surgery on this as well. Therefore, they wanted to actually examine how the esophagus was working by doing a manometry test. However, they were unable to put the tube in me because it entailed going up your nose and down your esophagus. You should have seen me, I was trying to figure out which nostril was the bigger one before they started to find out which would have the most room to have it inserted in. I just couldn’t sit still while they were doing it. They even tried numbing the nostril with lidocaine and a q-tip, but I just wouldn’t cooperate. My dad tried to restrain me, but it wasn’t working. Due to my autonomic dysfunction, I was just not tolerating anything. That is why the doctors decided to proceed with doing this test tomorrow after the surgery because in this way I would be sedated when they inserted the tube.

The doctors also wanted to see how well my rectum functioned because that would determine if a bag was needed. I am really against having a bag, as that is one of my worst nightmares. There are 2 things that freak me out and I fear will happen to me. I fear getting a bag and a tracheotomy.   They were hoping that they would be able to hopefully just remove the colon and connect the small intestine directly up to the colon if all was functioning. I was really nervous during this test and it was extremely uncomfortable. But you do what you have to do in order to find out things.

I also met with the doctors and surgeons and the game plan is set. I am really having a hard time dealing with it because I will be honest with you… it is a big ball to swallow. I really don’t know how I am going to be able to go through this. I am really going to need the support of everyone… not just financially, but emotionally as well. This is going to be one of the hardest things that I have ever occurred. The doctors said that this will be the biggest surgery I have ever had and the biggest battle I have ever had ever had to face. They said I would essentially be fighting for my life because not only is the surgery dangerous, but I am very medically complicated and as a result, I am a great medical risk. The chances of something happening to me are extremely high. But we really have no other choice but to go through with this surgery because without this surgery I will die.

Even though I am so scared of this surgery and will literally be battling for my life, at least it will give me a chance. The only thing is that I am really scared because one of my worst fears is coming true. It is amazing how something you fear the most always ends up happening. It turns out that I will end up having to get a bag after all.   I really didn’t want to hear that at all and really freaked out when I did. I am really going to need as much emotional support as possible with this because to be quite frank with you, I don’t think I can handle this. I am strong and have been through a lot, but this “bag” is one thing that I don’t think I will be able to handle. Everytime I think of the bag and having my intestines coming out of me so I can go to the bathroom into the bag, I literally get so nauseous and sick to my stomach.

The only thing that is keeping me going is that the doctor said that this bag is hopefully only going to be temporary. The doctor said that due to my horrendous medical condition and how complicated the surgery is, they will be giving me a bag initially, but they hope to remove the bag after about 6-8 weeks. But of course there is always that possibility that it can become permanent as well, and that is honestly what I am afraid of.

As long as the rectum proves to be able to function, they should be able to reconnect me. The whole reason that they are putting the bag into me is because the surgery is really complicated and they need time for the incisions and “seals” to heal themselves. They are going to be hopefully connecting a small portion of my small intestines to my rectum, as the entire colon will be removed. Therefore, they want to make sure that they form a seal and there is no “leakage” because if there is a leakage, I can easily die especially with all the medical problems that I already suffer from. The doctors are extremely worried that I am going to run into problems after surgery because of how deteriorated I am and that is another reason why they are giving me the bag. They rather be on the side of caution and give me a bag and let my intestines and rectum that they connect together heal without having the extra stress of things going through them and possibly having a “leak” or something. This is extremely risky and dangerous surgery. So they want to be as cautious as possible.

This will be one massive operation. The doctors said that it will be about a 10-hour operation and it will incorporate the undertakings of basically every department in the hospital because of my condition. They are really worried and are going to have a full team on staff with me. They are having me go for surgery tomorrow morning to explore what is going on and to get a sense of things better.   I will have one more test on Thursday and then they will permit me to go home for a bit while they organize everything and prepare for the last of the “minor” surgeries that need to take place prior to the massive surgery. I will then have to return in about 2 weeks from now that final “minor” surgery where this surgery incorporates having 3 departments. They will be using radioactive stuff and everything finally diagnose exactly what pieces are completely gone and see finally if the rectum needs to come out and how much of the small intestine too. I will also have all my pre-surgical testing at that time too. After that… it is time for the massive surgery.

I will be basically spending a lot of time in California and that is another reason why I really need to have the funds to support me. During this time of course my dad wont’ be able to work and income will definitely be a problem. In terms of the massive surgery, the doctor said that I will have to spend at least 2 weeks… and that is for the normal individual. I will have to probably stay longer considering how medically complicated I am and how if I get an infection or something how dangerous it can be. One minor infection can easily kill me whereas a normal person could possibly overcome it.

Since I have autonomic dysfunction and an autoimmune disease, it really complicates everything. The doctors say that we can’t afford for anything to go wrong because it will easily kill me. That is another reason why they are giving me the “bag” for a little while because we can’t afford to have a leak. One minor event and that is it. Plus, I am located across the country and if something should happen, it isn’t like I can get to California quickly and easily. I would have to go to my local ER or something, which would be unfamiliar with my case and not know how to go about treating me. So it really is a major big deal.

In addition, I will have to come a few days prior to the surgery because they will have to place me in the hospital to empty my entire intestine and colon. This is going to be one difficult process because they can’t even do it now. They have tried every which way to do so… laxatives, enemas, even the stuff that they give you for colonoscopy preps, etc. In fact, I even had an NG tube placed in me that went directly into my stomach and it ended up backing up after only getting about ¼ liter in it and it had to be pulled out because the liquid was coming back out of the tube. So they will really have their hands full on that.

As of the current moment, we don’t have an exact date of the massive surgery. It is all dependent on when they can schedule the pre-surgical testing and that other exploratory surgery that they need. The connection surgery, which is the second massive surgery, will be about 6-8 weeks after the initial massive surgery though. However, I will probably have to make a trip between those two surgeries back to California to have everything checked out and such and to make sure that the second surgery is a “go” before I actually fly out here to have it done.

The doctors said though that they are trying to make everything as quick as possible as they don’t want to wait any longer. They said that time is of the essence and we don’t have time to waste. Not only am I a time bomb and detonating and my colon is completely ‘dead’, but also I am not in the best shape. I am in fact in very poor medical condition and really a great surgical risk. I am less than 70 lbs. and the chances of me having a complication from a surgery are extremely high. Yet, I am deteriorating rapidly and they know I am not going to get any stronger. Ideally it would be great if they could wait and I could get stronger, but they know in reality that this isn’t going to happen. So they don’t want me any weaker than I already am because it is already basically a matter of life and death and we are walking a tightrope with this surgery.

I really love my doctors here. I never met such great doctors. I can’t believe that my surgeon actually gave me not only his email address so I can personally email him and not have to go through anybody else to get to him, but he also gave me his pager number. Can you imagine? He said that if I ever had a problem or question, I should never hesitate to call or page him, and he will get back to me immediately.

In fact, even when I go for all these tests and such, I don’t have a nurse or a tech perform them. I always have my doctors do them. What other hospital has their own doctors do the tests. Usually they have the nurses or techs do their work for them! It is so nice to go to a hospital where they care for you so much!

In addition, when I go for the exploratory surgery, they use special techniques that other hospitals don’t use and it is really much better for me.  Due to my extreme gastroparesis, I am unable to move anything through my intestines. This includes air and therefore, when I build up with air in my intestines, it literally takes me forever to get it out because I have to manipulate it out.  Anyway, when I go for the exploratory surgeries, they will have to pump me full of air, which is not good for me.  It wouldn’t be so bad for a normal person because they can just expel it afterwards by passing gas (or farting), which I really can’t do. Therefore, I have to depend on the doctor to suck out as much air as he can that he put in.  However, in this hospital, they don’t use regular “air” which is harder to come out too.  Instead, they use carbon dioxide, which is much easier to get rid of as it doesn’t collect and build up. Most hospitals don’t use this because it is much more expensive than regular air.

Everyone here is amazing. Even the people at the hotel are extremely nice. Thank goodness the hospital is so close to the hotel and the weather is nice too so that you can literally walk there because this way my dad will easily be able to get back and forth when I am there. Last time I was in Stanford, he left in the middle of the night and went in the wrong direction to go back to the hotel in San Francisco. Instead of going north, he ended up going south… and it wasn’t until he saw a sign saying Los Angeles that he realized he was going wrong. He went 4 hours out of his way because he was lost. So at least we know that won’t be happening this time.

10382507_10101179219097460_4899730216120684962_oWell in a few hours I will be undergoing the first of the minor surgeries. I am really nervous, but hopefully everything will go ok. Thank goodness I have my dad here because he takes such good care of me. I don’t know what I would do if I didn’t have him!  I know I definitely wouldn’t have made it this far if it wasn’t for him!
Today when we met with the surgeon we were standing outside waiting for the taxi to pick us up and guess what? I saw a bunch of people run over the door of a restaurant. I knew something was happening, so I instantly of course showed my dad. Well all of a sudden a body guard came out with a person and they quickly got into a car and left. In addition, there were paparazzi too and they got in their car too and followed them. Every car that went to that restaurant was an expensive car. We saw a Ferrari, Beamers, Mercedes, Rolls Royce, etc. Also, when the people picked up the cars at the valet stand, they would even wipe them down for them. It really is something here!

I just love California. If I could live anywhere in the world, it would definitely be here. I love it here. It is simply gorgeous.   Plus the weather is just simply beautiful. There is no rain, and the weather is warm with no humidity.

10372965_10101177537846700_2087035292194651517_oSo we will see what is going to happen. I am not feeling well and gotta rest. When I know anything more, I will let you know. Like I said… I have the surgery today followed by the test and then another test tomorrow morning. Since there is so much going on and we will be having to return very shortly for the another trip here and money is an issue, my cousin has been very generous and got us tickets to take the red eye home Thursday nite. I am so thankful to him because he really made it so much easier on us. Usually it takes us like 9 hours to get home because we have to stopover and such. Traveling is hard enough on me as it is, but with the stopover… it is even worse. However, we get the tickets with the stopover because that airline and with the stopover is of course cheaper and you make “cuts” wherever you can in order to afford things.

However,  thank goodness we were fortunate enough this time for my cousin to come to the rescue. I am honestly so sick and weak that I don’t think I could tolerate traveling a whole 9-10 hours and then changing planes and everything. At least this way it is a straight flight and we will be home in about 5 hours… BIG difference. I can’t wait to go home already because I know I will be in the hospital in California a lot coming up and I am going to really miss my mom and pets. After all, they can’t come with me.  The only thing that is going to be hard is that we are leaving at night and the nights are usually the worse for me in terms of pain and such.  That is also the time I usually take my ketamine, which I think won’t be able to happen.

So that is the upcoming plans. In a few hours I will have the first exploratory surgery. I will let you know how things go when I know more. Thanks again for all your support and encouragement. I can’t tell you how much I appreciate it. Please continue to spread word that donations are much appreciated at www.gofundme.com/FallonMirsky because we really can’t afford this on our own. All donations will be put to use for medical and personal necessities. Please help me!

Best,

Fallon

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June 13, 2014

10320981_10101171126739610_2318663981563502435_oHey-

So much is happening right now that I figured that I would write and bring you up-to-date as to what is occurring. There is so much occurring that my head is actually spinning. Thank goodness my head is connected to my shoulders because it would have spun off by now from what has been happening.  I am apologizing in advance if this little blog is incoherent, but I am on a lot of meds and therefore I don’t know if it is all going to be fully understandable or even going to contain all that is needed to say.  So

Unfortunately I am not doing well at all. I had another surgery today because it is another Friday and therefore, I went for my usual “housekeeping!” I need to go every Friday for surgery because they have to try to suction/vacuum out as much of the intestines as possible because my colon is basically ‘dead’. Nothing is moving at all and therefore, things are literally fermenting and rotting inside of me. Doctors are really worried that I am going to perforate or rupture my colon or that I am even going end up going into Sepsis because of all the stuff that is literally just staying and rotting inside of me. There is so much viscous liquid inside of me that I can’t expel that the doctor literally has to perform surgery every Friday to try to vacuum/suction as much out as he could.

I have really been deteriorating lately. My abdomen is extremely bloated, I am leaking a lot of mucous more than ever, and I am in tremendous amount of pain. I really need help and help fast. Each night we basically have to change my sheets twice I either vomit up blood, which has been happening frequently lately, or I have been producing a lot of mucous (not to sound disgusting). I am also having a really hard time breathing, as the aspirating is getting worse. I am literally drowning in my fluids. I am trying to hold on, but I am telling you that it is really getting harder and harder. I go through more clothing at night than I do throughout the day.

The doctors can also see that I am getting so much worse. Even within a week’s time they can see a difference. There is so much more viscous liquid that had to be drained than last time and the doctors have seen such a difference within me from the last surgery that I had, which of course was last Friday. My colon is extremely dilated, which is not a good sign. In addition, I am also vomiting blood now, so not only did they have to vacuum me out and suction me out when I had the surgery on my intestines today, but they had to also work on my esophagus today to further determine what the bleeding is and such.

So today was my typical Friday. It was “Housekeeping Friday” because I went for my usual surgery to clean me out. However, not only did I get “cleaned” and had the extra exploratory surgery because of the vomiting blood and such, but we also discussed a lot of things. We always wondered why they couldn’t do all the tests and surgeries that I needed to have done right here in the New York area. After all… this is New York and it is known as having the best of everything including hospitals. Well, we found out that the reason that I can’t have the tests and surgeries done here is because what I need to have done can only take place in a top research hospital like Cedar-Sinai.

The problem with New York is that it is too expensive. It is amazing how money controls the whole entire world. Not only is money preventing me from going to get the much needed lifesaving treatment that I desperately require in order to save my life, but it is also why I can’t have the surgeries and tests performed here. The doctor explained to me that since the cost of New York to live is so expensive in general, most surgeons and doctors don’t want to invest in living here especially when these tests and surgeries are also very expensive to have done. So since cost is so high to live here, doctors rather go to places like Cedar Sinai Hospital and work from there.

We are about 2 days away from leaving to go to California, but I am not counting on going until we are up in the air. We are still having a hard time getting the funds together, so if you have any way of helping us out… whether it is by donating and/or spreading the word of my website, I would really appreciate it. I desperately need to go too. In fact, the doctors know how important it is that I be there because they are actually making “exceptions” to me coming because they really don’t have room in their schedules. But hopefully all will work out and we will be on the plane Monday morning to California.

Besides going for the surgery today, I have been on the phone all day with the doctors from California. Even though they are across the country and not physically seeing me, they have been getting copies of every surgery and procedure that I have been having. They are not pleased with what is occurring with me and they know how necessary and imperative it is that I get to them immediately. That is why they didn’t want me to wait to have that last test done, which they wouldn’t be able to arrange for another month. They made special exceptions for me to fit in with the surgeons and everything so that I can come next week and not wait because things are so bad. They don’t want me waiting at all because to be quite frank… we don’t have time to wait. Time is not on our side.

The doctors know that I will need surgery, but they are hoping to be able to do this all without having to give me a “bag”. It would really be great if they can do this because I really don’t want to have an ostomy bag and they know it. So they are going to be doing all these tests, procedures, etc. when I go down next week to finalize exactly what has to be done and this way we get all the t’s crossed and I’s dotted. We hope that after this visit to California that we will be able to have the surgery on the next visit.

The doctors have me going for so many tests and procedures when I go to California. I know it certainly won’t be a “fun” trip by any means. I probably will be suffering beyond belief. But I really don’t have any choice. At first I was a bit hesitant in going as well because there were some tests and procedures that I had already had and they are just repeating them. Some of these tests were considered a “waste” when I had them done because they couldn’t get accurate results I couldn’t do what the prep was or do exactly what the test required.

So I questioned the doctors if it was really necessary to have those procedures and tests again because I didn’t want to spend money where I didn’t have to and I also didn’t want to put my body through any stress that it didn’t have to do so either. The doctors at Cedars-Sinai said that they want me to go for all these tests and procedures because they want to see firsthand what is going on especially since taking out the colon and such, which is no small surgery. In addition, they told me that they know how very sick their patients are and they adjust the tests to our needs. Therefore, whereas the other places had difficulties with the tests because I wasn’t the typical patient, they know how to make the appropriate adjustments and how to interpret the results accordingly.

I know that it is going to be a crazy week in California. There is going to be so many surgeries and procedures and tests. At least the actual doctor is doing everything instead of having a nurse or a tech do them. I never went to a hospital where a doctor performed everything for the patient. The doctor said that I am so “specialized’ and complicated that he wants to do everything himself.

In addition, I will be meeting the surgeon that will be doing the surgery. It turns out that the surgeon is one of the top surgeons in the nation and I have even seen him plenty of times on TV without realizing that he would eventually be my doctor too. The surgeon that I am seeing is named Dr. Zuri Murrell and he is one of seven doctors at Cedar-Sinai hospital and has been practicing medicine for over 14 years. He is one amazing doctor that I am so glad that I am going to have him as my surgeon. I just hope it all works out when I meet him.

Dr. Murrell is the Director of the Colorectal Cancer Center at Cedars-Sinai in Los Angeles. He has so much written about him. He is nationally recognized as a top colorectal surgeon and trains colleagues and students at Cedars-Sinai in Los Angeles. He is not only supposed to be an outstanding surgeon, but he is supposed to have excellent bedside manners as well. You don’t find doctors like that around much anymore.

So… it is going to be a long week and hopefully everything will work out. So this weekend will be busy getting everything ready. I am thinking of renting out “Orange is the New Black” because I watched season 1 and it will give me something to do on the plane and such to watch season 2. I am also trying to think of some good books. Any suggestions? I am already reading “Cuckoo’s Calling” by JK Rowling and the sequel is coming out on June 19th, so I will have that as well. Know any good movies to rent? I really would love to see “Fault In Our Star” but it is in the theaters and unfortunately I can’t go to the movies. I read the book and it was simply amazing. However, I will have to wait until it comes out on DVD before I can see it because that is just another thing that this illness robbed from me. I can’t go to the theater because I can’t sit in the seats due to the way they are set up and the length of time. I won’t be able to sit for a full movie at one time. Plus, I won’t be able to be around so many people for such a long period of time both because I have absolutely no immune system and I can’t afford to catch anything. After all, everything is magnified for me and therefore, a simple cold is like having the flu to me.

Screen Shot 2014-06-07 at 3.02.46 AMThere is so much packing to do. I have this special pillow now that I have been using to help with the aspirating. It is really comfortable. I am thinking about bringing it along with me on the plane especially since they don’t give you pillows anymore on them. I just hate carrying things because I knowhow difficult it is. I can’t carry things because I am in the wheelchair, and my dad has enough to carry already. So I don’t know honestly how well that pillow is going to work. Maybe I will be able to stuff it in the cosmetic bag with all the medicine. But to be honest… there is so much medicine that I doubt it.

Well… I am really not feeling well so I am going to cut this short. I will write more when I know more. Thanks again for all your support.

Love,

Fallon

 

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June 10, 2014

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Hi-

I just wanted to update on what has been occurring since a lot has occurred in the past few days. I am not doing very well and it is making going to Mexico and California more urgent than ever. Yet, we are unable to afford either of the trips. We are at least hoping to be able to go on Sunday to California because at least my Gastroparesis will be helped even though the real “cure” to my neurological disease and autonomic dysfunction is located in Mexico! In addition, since we cannot afford to go to Mexico at this time because it costs $100,000 we are hoping to ‘buy’ time by going to California because even though it will still be costly, it will cost less than the $100,000 that we need for Mexico.

I am really begging and pleading for help. I need as much help from others as I can get because to be quite frank and honest with you… we cannot afford my medical treatment by ourselves and if I don’t get to Mexico and California, I will definitely die. I am like a time bomb ticking away and it is at the point that I am actually “detonating”. I have never been so scared before. I know I sound like a “broken record” already with telling you how bad I am doing and asking for “help” but I just can’t do anything else but do this and hope that one day my wish will come true that I will receive enough funds so that I can get the appropriate treatment that I desperately need to save my life. We can’t even afford any of my medication anymore!  I know how difficult it is to survive in today’s world with the economy being the way it is, but I know if everyone would donate even just one dollar ($1), I would be able to receive my wish. I am not asking for much. Any help whatsoever would be much appreciative. After all… one dollar is one less than we have to come up with.

I have been doing really poorly lately. I have seen things going wrong with my body lately that I have never seen before. When I questioned my doctor about “why all of a sudden is this occurring and being so bad?” My doctor replied to me by saying, “You are deteriorating and what is happening has to start to show somewhere and in some way.” So… now I am seeing just how bad this disease is actually getting instead of just “feeling” and seeing the numbers!!

10416632_10101169630787510_32683049616801900_n-1To begin with, I am totally scared about my legs. They are so swollen. I call my legs “elephant” legs because they are so bad. They have the worst case of pitted edema that I have ever seen. When you touch them you can actually leave fingerprints in them. They are so filled with fluid and even when I raise them or elevate them, the edema doesn’t dissipate like it should. The more liquids that I drink… of course the worse it gets. So you can imagine by the end of the day how swollen my legs, ankles, and feet really are.

In addition, I have been having a really hard time breathing… worse than usual. It kind of is no surprise when you look at how much fluid is building up in my legs. I am aspirating really bad into my lungs and just as my legs are filling up with fluid, so are my lungs. It literally feels like I am drowning in my fluids. In fact, when I go to the doctor, the doctor can even hear how “noisy” it is inside of me.

I spent the entire day today going to doctors. I had to get my bloods taken and I also had to go to the kidney doctor as well because my kidneys aren’t doing so well either. I am having a very hard time urinating, as I am having a hard time “emptying” my bladder completely even though I frequently go to the bathroom.

To begin with, my bloods came back and they are not good at all. Well… I can’t remember the last time they were “good,” but these bloods were worse than usual. To begin with, my glucose is really low and they are scared that I can go into a coma. I usually have really low glucose, but it never really was this low. The absolute lowest it should be is 70, but mine was reading like 37. It is dangerously low. My body really can’t process sugars and fats, so it isn’t really good. In fact, to tell you the truth, I am not even allowed to have fats in my diet because of my severe gastroparesis.

I also found out that my clotting is really off. It is usually off too, but it is off more than usual. Therefore, it makes going for surgery even more risky. This is definitely not a good thing especially when I go for surgery every Friday when I get suctioned and vacuumed out. I already have internal bleeding somewhere too and with this clotting problem, it really makes it harder to clot. I also have to have that upcoming surgery to remove my colon and such. But with this clotting factor being so irregular, it really complicates things even further.

In addition, of heart bloods are off as usual that can cause a severe arrhythmia and cardiac arrest. My electrolytes are extremely low and therefore, it really can be troublesome especially when my heart is not functioning well to begin with and I am taking the medication that I am already taking.

It is like I am in a no win situation because I desperately need to be on these medications for my illness and yet, these medications are causing added complications to my heart. These medications that I am taking are causing extra stress to me heart on top of the stress that my heart is already having by having low blood values and my illness working on it. It is really not a good combination and yet, I have no choice but to stay on these meds though because it is for my illness and I can’t come off of them. I just got to hope that it doesn’t really come together and add up to cause one real great devastating problem and cause a real devastating outcome.

This is just one more reason why I really need to go to Mexico. Not only do I need to go to Mexico to get better because of my illness, but also I have to get off these medications. There is no other way I will be able to get off the meds but if I go to Mexico. I can’t come off them because I am on such high amounts and so dependent on it. I also have the severe autonomic dysfunction and therefore, it really is a huge problem. Even going down the slightest amount causes severe problems. That is why I need to be in a coma when I am “detoxed” off these drugs. So at least when I go to Mexico and go into the Ketamine Coma I won’t just be “cured” of this illness, but I will be detoxed off these drugs too. So it will be a win/win combo. I just got to be able to afford it. U know? I got to get there ASAP!!

I also went to the kidney doctor today because my kidneys aren’t doing well. Not only did I go to the kidney doctor to see if maybe it was contributing to the edema in my legs, but I also been having problems going to the bathroom in the sense that I keep having to go! The doctor also discussed with me how he is afraid that as the disease progresses and the autonomic dysfunction worsens, he is fearful that the disease might cause me to have to catheterize myself each time I have to go to the bathroom. I don’t even want to ever think of having to do that. I really hope it never has to come down to that.

Having low blood pressure, as my blood pressure is only usually about 70/30, causes me a lot of problems. To begin with, the doctor wanted to put me on a diuretic for the edema and because I am having difficulty emptying my bladder and such, but unfortunately it isn’t possible. The doctor told me that I would literally die if I took a diuretic because my blood pressure is already too low to begin with and if I took it, it would drop even lower, which is something that I cannot afford to happen whatsoever. Even the slightest drop in blood pressure can be detrimental to my health because of how low it is already.

Speaking of blood pressure being so low…I have been having the worst problem with breaking into cold sweats right before I have to go to the bathroom. I get extremely hot… almost like a hot flash except I can’t sweat really because of the autonomic dysfunction. I get so hot that I even get a prickly feeling all over my body. Yet, once I do go to the bathroom, I instantly turn in the reverse feeling and begin to freeze. I get so cold that I have to put a sweatshirt on. So I actually go to wanting to tear off all my clothes right before I go to the bathroom to wanting to be completely covered afterwards in a matter of just going to the bathroom. It happens right away.

The reason that this happens is because my blood pressure is so very low and I am so hypersensitive with the autonomic dysfunction that the slightest amount of stress on my body causes it to really go out of whack and sets off the sympathetic nervous system to produce the hot flashes. My blood pressure going up from having to go to the bathroom is so much because my blood pressure is so very low to begin with that it causes these feelings. Yet, after I go to the bathroom, my blood pressure of course drops and that is why I freeze so much. That is also why I get so dizzy and sometimes can “black out.”

In addition, as I can’t regulate temperature because of the dysautonomia/autonomic dysfunction, it can be extremely deadly to me because I can have a reaction to the heat that can range anywhere from mild/uncomfortable to deadly. Some individuals go into cardiac arrest at temperatures ranging from 72º up. Changing from temperature to temperature can also trigger dysfunctional autonomic responses, as the dysfunctional autonomic nervous system overloads or just fails to accommodate. That is why I need the temperature to be completely regulated at about 72 degrees and we cannot have the windows open. We have to make sure that the temperature is maintained at that specific temperature because anything that deviates can be detrimental to my health.

Finally, the doctor stated that he could tell how ‘dehydrated’ I am. No surprise there because I am so very thirsty. However, I can’t drink anymore than I am already drinking because my body only allows me to drink a certain amount and even if I drink an ounce more than it is “allowing” me to drink, it will instantly set off the autonomic dysfunction and it will be a disaster. So I really don’t know what to do. Sometimes I think that the autonomic dysfunction is the worst part of this whole entire illness because it is so bothersome. It really drives me crazy because I can’t tolerate the symptoms that it causes.

I only wish that this autonomic dysfunction could be cured. Autonomic dysfunction can kill. Everything that I do affects the autonomic dysfunction and causes severe problems. Yet, if I went to Mexico and had the Ketamine Coma, I would be able to have that happen and I will no longer have to worry about drinking that ounce to much or breaking into hot flashes and feeling “prickly” before I go to the bathroom or everything else that occurs when the autonomic dysfunction takes off.

Not only would I not have to worry about those unpleasant and uncomfortable feelings, but also it would also essentially SAVE my life because this autonomic dysfunction can and will eventually kill me. This autonomic dysfunction is actually wreaking havoc throughout my entire body (including organs and everything else).

So it has been a very LONG day today. As you can see there is a lot going on and we are really hoping to find a way to get to Mexico and California so that I can get the HELP that I desperately need. We are supposed to be leaving Sunday for California, but of course it is dependent on the finances.

No matter what…at least I will get to spend Sunday with my dad. I am so very glad that I will get to be able to spend another Father’s Day with him because he means the world to me. I am so thankful and grateful that he is my dad. If he wasn’t here, I know I definitely would never have made it this far. He is not only my dad, but he is my best friend and knight and shining armor. There is nothing that he wouldn’t do for me and that is why it hurts him so much that he can’t get me the help that I need or take the disease away from me and protect me from all this pain and suffering.

My dad never treats himself to anything and never buys himself anything. So for Father’s Day even though money is extremely tight, I saved up enough money to buy him a nice shirt. I figured that not only could he use it because he doesn’t buy himself any clothes whatsoever, but he also can use it because he needs clothes when we go away. My dad will literally wear the same clothes over and over again, and he will even take a black sharpie and color in missing black patches or faded spots on his black pants if it means him saving money. My dad refuses to spend a cent on himself because he knows how much we need the money for other purposes.

Well… I am going to get going. Please continue to pray for me and please spread the word the help is desperately needed.  The treatment cost is at least $100,000, which is why are fund raising. We have been researching whatever options we could find including trials, but as of now my best “cure” is in Mexico and I need to get to California for treatment as well. We are praying for a miracle and hope I am going to be able to get to Mexico soon so that I can get my life back and live the life that I was robbed of. After all, I was destined to be somebody great and I have the great ambition to become a doctor so that I can help others.

Not just me, but my entire family, appreciate any and all help. Thank you so much!

Love,

Fallon

P.S. Just want to remind you that bracelets are still available for $5. If interested, please inbox me at Femirsky@gmail.com. They come in pink or blue and say HELP FALLON FIGHT! All money goes towards helping to pay for my medical expenses.

 

 

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June 7, 2014

10269266_10101160276249080_2607328309938551457_oHey-

I know it has been awhile since I have written, so I decided to write a little update as to what is happening especially since so much has happened in the past couple of days and to let you know as well that we are scheduled to leave for Los Angeles shortly. We are scheduled to leave for California next week, but of course it still isn’t definite yet because we are still short on funds. I really need to get to California because I have really been deteriorating and unfortunately there is no other place around here to receive treatment.

On Father’s Day, which is June 15th, my dad and I are supposed to be headed again back to Los Angeles, California. We are going to be going back to California because I need to have tests and exploratory surgery. I am not doing very well. In fact, I am really going downhill rapidly. As I told you before, they decided that I needed to have my colon removed because it is “dead” and they also are pretty certain that I need esophageal surgery as well because my esophagus isn’t working either. Therefore, they want me to come to California for all the presurgical testing as well as other diagnostic testing to further determine exactly what needs to be done. They know they have a huge crisis on their hands, but they are trying to localize and minimize everything as much as possible because they know how fragile I am and how any surgery I have is really dangerous. They also know that I really don’t want a “bag” and therefore, they are trying to work around not having to give that to me.

So what better way to spend Father’s Day than to spend the entire day traveling with my dad across the country. I just hope that we get to go because I am really deteriorating a lot and fast.   My heart has really been giving me problems, as my heart has been feeling quite ‘weird’ lately. I have also been suffering from severe chest pains lately that penetrate throughout my body even down my arms and up my neck. With my bloods being as horrendous as they are… we already knew that my heart was being affected and all that has been going on was taking a toll on it. My heart rate has been so very low lately that when I go for my usual surgery on Friday, the emergency alarm on the machines won’t stop going off.

We know things are not right because lots of things have changed especially in the last week or so. We think that my illness is really taking a huge toll on my heart now and causing it to fail. We think that I am having heart failure. Heart failure does not mean the heart has stopped working. Rather, it means that the heart’s pumping power is weaker than normal. With heart failure, blood moves through the heart and body at a slower rate, and pressure in the heart increases. As a result, the heart cannot pump enough oxygen and nutrients to meet the body’s needs.

With all that has been happening, I have been getting severe edema in my legs and feet. Even if I elevate them, which you are told to do so in order to alleviate the fluid, the edema is not dissipating. Edema is a swelling due to the accumulation of excessive fluid in the tissues. In addition, I am getting really dizzy, weak, and fatigued. I have also been complaining about my heart beating “weird” and racing.

Even breathing and talking is getting harder. I keep aspirating and therefore, I keep feeling like I am drowning in my own fluids. You can literally hear my gurgling when I breathe. When the doctors examine me, they are like “sounds very noisy inside!”

I have also never changed my sheets as much as I have done so lately. I keep vomiting up blood at night when I ‘cat nap.’ It is really scaring me because it definitely isn’t normal to be vomiting up blood.

With everything that is occurring, I really need help and help fast. I really am hoping that we can move from HOPE to ACTION in going to Mexico. Ideally I need to get to Mexico, which is the place that will be able to hopefully put this whole entire illness into remission and ‘cure’ me, but unfortunately we are so short of funds because it will cost about $100,000. So, we really need to look to other options to ‘buy’ time. So that is the reason we are heading to California. We don’t even have the money for that trip to California either, but at least it is less than Mexico and we really need to do something in order to try to ‘buy’ me time to live. Without going to California and having these surgeries and tests and such, I am not going to make it much longer and I won’t even have to worry about going to Mexico.

So we are heading to California for at least a week starting Father’s Day. If you can please spread the word that help is needed and please say a prayer, it would be greatly appreciated. Even the littlest amount will help! We are thankful for anything that anyone can do for us because I am a ticking time bomb and I am detonating.

In the meantime, things have not been going well. I just had surgery today because it was Friday. Since my colon isn’t working, I have been going to the hospital every Friday to have surgery because I need to be “vacuumed/suctioned” out. I joke around and say that I am getting “housekeeping” done. It is really necessary to do this because my colon is so dilated and everything that I take in and I don’t vomit back up just sits in there. Therefore, I have not only wastes but also medications and other stuff just sitting there and rotting. That is why it smells so putrid when it comes out. I don’t even have any formed stool anymore. It is all just viscous liquid and mucous. Since the colon isn’t moving things along, the doctors are afraid that the intestines will perforate or rupture and we will have huge problems. I can easily go into sepsis because of this, which will easily kill me. In addition, the colon is so dilated and putting so much pressure on my organs that it is shutting them down as well. So when I go for the “suctioning/vacuuming,” the doctor tries to remove whatever he can.

I am in so much pain in my belly. I can’t go to the bathroom and I keep filling up with air. The only thing that comes out of me is mucous. I am on so many potent laxatives and yet, I still can’t get things out. I already take 6 Senokots, 6 Colasces, 8 Ducolax, 600 mg of magnesium, and injections daily. The doctors have tried everything that they could such as enemas, but nothing works. The only option that we have is this surgery that I have to get every Friday.

So today was another surgery. Everyone knows us at the hospital by now so they kind of know how to treat me and what my numbers are. After all, I am not like a ‘regular’ patient and therefore I can’t be treated like a typical patient. The nurses are so very nice there and my doctor is really amazing. They try to make it as easy as possible for me, as they know how much pain that I am in.

When I go for the surgery, I am fortunate that they allow my dad to come with us into the OR. They let him stay there with me until I fall asleep from the anesthesia. You can’t imagine how much better I feel knowing that my dad is there when I close my eyes and go under. There is always music playing in the OR so my dad always teases the doctor about what is playing. My dad said that there better not be “Knocking On Heaven’s Door” when a patient is wheeled in. My doctor always asks me if there is something special I want to listen to. Of course I always tell him that I don’t care.

I am really nervous that something really bad is going on inside me because not only did the doctor tell us that it was so horrendous inside and it was one of the worst times he has seen me, but I am now bleeding every time I go to the bathroom. I keep saying it is just a reaction to the procedure and because it was so bad inside, but truth of the matter is that I am scared.

In addition, I also went for a ketamine coma/infusion this past Wednesday. I only wish I could stay under ketamine forever because that is the only time I am not in pain. The doctor increased the ketamine dosage, but of course once the infusion is complete and about an hour or so after I open my eyes… I am back to square one! That is why I need to really get to Mexico. I need to get to Mexico so that I can get the amount of Ketamine that I really desperately need since that amount is not legal in the United States. In Mexico, they basically give you so much ketamine that it shuts down your entire body and that is why you are kept alive on machines during that time.

My doctor also gave me a new medication to take to try to help me in addition to raising another. However, I ended up having such a reaction to it that I won’t be taking that medication again. Since I have been deteriorating so much and in so much pain, the doctor gave me Klonopin, which is on the same lines as Valium. He thought that it would take the edge off the pain. However, he ended up giving me the highest dose it came in and therefore, it really put me “out.” After I took the medication, I couldn’t even walk. My legs buckled. I also passed out from the medication and have no recollection of anything that happened the following day.

That is another reason why I need to get to Mexico. Besides going to Mexico so that I can be “cured” of my illness, I need to go because that is the only place that can detox me as well. I don’t want to be on these medications anymore. I take over 50 pills daily, and they are really powerful medications too. I take everything from morphine to ketamine to Dilaudid to Nucynta to methadone to more. I am on so much medication that it can easily kill a horse. Doctors are amazed how someone as little as me can take that much meds because they say that a 300-pound man wouldn’t even be able to handle the amount of meds that I take. I know that there are detox programs here, but they will not work for me. I need to literally be put into a coma to have the drugs taken out of my body because the withdrawal is too severe. They even tried to go down on morphine just 30 mg and I was feeling the worst withdrawal effects. It really triggered off the autonomic dysfunction. So… if I have any hopes of getting off the medications, it really has to be done safely and it has to be done in Mexico. So that is just another HUGE reason why I need to get to Mexico.

I really need help and I really need to get to Mexico. I am suffering so much and the pain is so unbearable. I can’t take this life anymore. I cry all the time because the pain is unimaginable. No one can ever imagine how bad this pain is. I don’t wish it on my worst enemy. I literally cry every nite to my dad and tell him to just to take me to Mexico already even though we can’t afford it. Even though we were told that the hospital won’t release me until I pay the bill and in the meantime they will continue to charge us until we do, I keep telling my dad to “forget about the money issue and lets go. Let them just keep me there. Who cares! Just get me help!!” I honestly don’t know how much longer I can hang on.

Screen Shot 2014-06-07 at 3.02.46 AMI just bought these new pillows for my body.  I have been in so much pain and nothing I do is making me feel comfortable.  Even to elevate my legs… I can’t find a comfortable way of doing so.  So I finally found these pillows from BROOKSTONES that are called FOM pillows. They are so comfy. I am thinking of even bringing them with me to the hospital and even on the plane.  They are small enough to do so anyway.

In the meantime though, I have been doing some reading. I am reading “The Cuckoo’s Calling,” which is written by JK Rowling. It is pretty good. I was such a HARRY POTTER fan, so I decided to read her other books as well even though she wrote it under another name. The second book to this book is coming out very shortly (like in a week or so).

I am really excited because my mom and I are supposed to be doing this thing called “Paint Nite” together. I can’t really go out at night because of my meds and such, but we found one that was given in the very early afternoon.  It’s at a local bistro, but even though I can’t eat or drink anything, at least I will get to paint and spend the time with my mom. You get to paint a beautiful picture that the artist guides you through and they bring all the supplies. I am definitely not a painter and barely can draw even a straight line without a ruler… so it will definitely be interesting how it will come out. But the however it comes out… at least I will finally be able to do something special with my mom.

I really think that the Rangers might win the Stanley Cup this year. Weird things have been happening this year with the weather and everything. The Rangers haven’t won in 20 years, so they are due. Plus, they are having the TRIPLE CROWN tomorrow and it could very well happen that California Chrome will become the 12th horse to win the Triple Crown. I really think that if there is a TRIPLE CROWN winner, then the Rangers are definitely going to win. So we will have to see. I wonder how it is going to be going to Los Angeles with the Blackhawks being the ones that the Rangers are playing because after all, the hotel I am staying at is 19 minutes away from the STAPLES Center and it is one of the biggest events!

I really just hope that I get to California! So if you can please spread the word that donations are very much needed and very much welcomed, I would appreciate it. Every dollar is making a difference. Thanks again for all your prayers, encouragement, and support. If you have any ideas for a fundraiser, please contact me too!

Love,

Fallon

 

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