Hi—
What a week this has been. I figured that I would write and inform you all that is happening because there is so much happening lately.
I really don’t know honestly how much more my little body can take of this. I am so physically, medically, and psychologically drained. I am just so tired and barely hanging on. I am supposed to be leaving on Tuesday for Cleveland Clinic, but to be honest with you… I really don’t feel strong enough to go. Between this illness really getting worse and taking over, me severely deteriorating, and the recent surgery I had to remove part of my jaw and teeth, I am just so weak and tired to travel. In addition, we don’t have the funds to even go. But, I do know how important it is that I do get to Cleveland Clinic because I am really a time bomb that has been detonated and I am really running out of time. If something isn’t done fast, I am definitely not going to make it much longer. That is why the doctors at Cleveland Clinic want me to come ASAP because they want me to get the show on the road because they know that I am basically hanging on by a thread. After all, my GI tract is paralyzed, I am only weighing in the 60s, I am being intoxicated and poisoned by stuff entering my bloodstream from my colon and GI system, etc. I desperately need help and help now. But like I said before… I need the funds to do this as well and unfortunately, we don’t have the funds at this time to even go. I am hoping though that in the next few days that I will be able to come up with the money through donations because it is so important that I get there. So if you can please spread the word that HELP is needed, I would really appreciate it.
Going to Cleveland is really up in the air for other reasons as well. Not only do we not have the funds, but I am still also suffering from the surgery that I previously had on my jaw and teeth. I am in excruciating pain from it still and to tell you the truth… if I knew it was going to be this bad, I probably wouldn’t have gone through with it even though I really had no other choice because I had a massive infection that had to be taken out.
The pain is so unbearable that I can’t eat or drink anything. The pain is so much worse for me too because of my illness, as it magnifies everything. I am so hypersensitive because of my illness and therefore, a simple needle stick is like someone putting a knife through me. So you can just imagine what having someone cut you feels like and having part of your jaw removed would feel like.
I can’t even eat or drink on one side because I had surgery on both sides. Even the littlest things are impossible. Between my GI system and my mouth… eating and drinking is a big challenge… bigger than you know. I can’t even have the few things that I was living on before like the egg whites and the ice-pops. I need to have the ice-pops especially too because my heart meds are in them and my heart isn’t doing well as it is. I really can’t afford also not to eat because of my weight. I weigh so little already that even losing an ounce is extremely dangerous and life threatening.
In addition, dad hasn’t been well and therefore, I am also worried about my dad and I don’t know if he is well enough and able to go either. He will have to work so hard when we go there because I get really sick from the traveling and everything and between me and the luggage and everything else… I don’t know if he is “up” to it. I don’t want to get him sicker either. He has had that fever and shakes and everything and that’s literally scaring the crap out of me. He never gets sick so for him to be like this for so long it’s scaring me. We took him to the urgicenter on Sunday, but they place honestly sucks. I would never recommend that place. They gave him an antibiotic but even I said that med stunk. Luckily when I went for my ketamine my doc gave him something else and since he changed to that he has been making a full recovery. But that has only been the last two days or so. Mind u that he never once slows down or anything when he was sick with fever and all. He still worked harder than ever.
Finally, I don’t know if I should go because it would mean that I would be missing my “cleaning out” surgery on my colon next week and since I didn’t have it today, it would mean that I would be missing 2 weeks of it. To go 3 weeks without having it done, it will really not only be extremely uncomfortable but it will also jeopardize my health.
I am really deteriorating and the one thing that was “buying” me time was canceled on me today. I can’t begin to tell you how upset I am over this because not only was it “buying” me time, but it was also a procedure that was the only thing that made me more comfortable. You can’t believe the suffering that I feel with the paralyzed GI system. Plus, the doctors are so worried that I am going to have Sepsis or something because my colon is going to rupture because nothing passes through. As a result, everything just sits in my GI system and rots… whether it is meds, food, etc. My entire GI system is basically paralyzed and ‘dead!’ That is why I need my colon removed and a multivisceral transplant too, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver. Nothing and I mean nothing is moving through and it is through this procedure only that things actually move out of me. I am literally being poisoned by the stuff that is staying and rotting in my GI system. It is shutting down all my organs and I really need help. However, until I get this operation to remove the colon and the transplant, this “cleaning” that I have is the only thing that is “buying” me time until I have it done. Without this procedure being done, I would definitely not make it much longer.
Yet, I still don’t honestly know what to do now because I was canceled today for my procedure to be “cleaned out.” Not only does it cause problems with making me feel worse and cause problems with jeopardizing my health, but it also causes problems because I don’t know if I should be going to Cleveland now on Tuesday. It was really important to have this procedure today because if I went to Cleveland Clinic next week, I would be more than likely missing the “cleaning” next week. However, now that I haven’t had it done this week, there is really no way that I can go 2 weeks with not having it done. I will not only be suffering like you will never believe but all those toxins building up will really be no good and can really cause HUGE problems. It can also cause my intestines and colon to perorate because the colon and intestines are so distended and nothing moves through unless I have this procedure.
In addition, I also needed to go for this procedure today because I needed to talk to my gastro doc about the upcoming trip. I also have been suffering from some new problems lately and I wanted to see what was going on. But now that I haven’t had the opportunity to go for this procedure, I don’t know what to do.
I honestly can’t believe that the doctor canceled me because he knew how important this procedure was to me and how much I needed it. He knew that I especially needed it because not only was it “buying” me time but it was also needed because I was going to Cleveland in the upcoming week. I am so mad because the doc lied to me too. They called me up yesterday saying how they needed my space because he was overbooked. Meanwhile I needed that cleaning desperately because that’s the only thing buying me time and everything. So I explained get all to the girl and how I’m going to Cleveland and everything and she said she would get back to me about putting me back on the schedule. Well they got back and she said that they aren’t doing procedures there anymore because they were suspended after what happened with his. Rivers. I had a feeling she was lying because earlier that day I called and made all my appointments for October.
Therefore, I called the office today and found out that I was indeed right. I was cancelled and the doctor is still doing procedures and everything. I am so upset because he knew how important this was too. I then called my doctor later on and left a message with the girl to have him call me back because I wanted to discuss some of what happened with him as well as talk to him about other things such as how I am not feeling well and all those questions regarding Cleveland Clinic. I also wanted to find out perhaps if he could do the procedure on me maybe on Monday since I am supposed to be leaving on Tuesday. But, like always… the doctor never called me back.
So now I don’t know what to do. If I could change GI doctors, I probably would. But unfortunately, even though NY has plenty of GI doctors, there are not many GI doctors who are familiar with my illness and willing to take on my case. So I really don’t a big list to choose from. I think I exhausted every GI doc that can possibly exist. The only good GI doctors honestly are out-of-state and even though I have excellent doctors out-of-state such as in Cleveland Clinic, I still need to have a doctor in New York so that if something happens at home, there is still someone locally to take care of me.
Who even knows if going to Cleveland Clinic and having my colon removed and having the transplant is the right thing to do. It is such a massive operation that is extremely dangerous. I went to have ketamine the other day and when I was in the coma, my dad was talking to the doctor about the upcoming surgery and such. My doctor had told my dad that if I go for this surgery at the Cleveland Clinic that I am going to be committing “medical suicide” because it is so risky and dangerous. He said that I would never survive the surgery. Yet, what other choice do I have? I have to do something because otherwise I am definitely going to die.
Ideally I really need to get to Mexico to have that ketamine coma that is not FDA approved in the United States. That would be the BEST option of them all. It is the one thing that has been shown to “cure” the illness. Even though it sounds really scary and it is also risky, it is really the best thing to do. However, there is no way that I can come up with the $100,000 to pay for the coma and therefore, I cannot have it. I have tried many way to come up with the funds for years and all I have been doing is not really getting anywhere while I am deteriorating and dying. But it really stinks because money means more than a person’s life. It is a shame that because I can’t come up with the needed funds, I can’t get the procedure that can save my life. So we can’t just sit back and do nothing since I can’t afford to go to Mexico because I’ll die literally. The only option I have is to have the colon removed and then the transplant. U know?
I really don’t know honestly if it pays to go at this time to Cleveland Clinic or if I should put it off for a bit considering everything that is happening. I really want to go because I am going to be seeing one doc who is famous for my neurological disease. There are very few docs (like 3) who are extremely knowledgeable about my neurological illness and the pain and everything, and one of them is at the Cleveland Clinic. He is retired, but he still sees past patients once a week and since I saw him years ago, I am fortunate that he will see me again. I really want to see him because not only am I suffering immensely, but also the surgery that I had on the jaw really spread my illness as well and therefore, I really need more help than ever. In addition, since I can’t get to Mexico to get that ketamine coma, I am hoping perhaps he might have some other magic up his sleeve.
However, I also have other appointments scheduled besides seeing him. I am supposed to have a whole week worth of appointments. I have appointments with doctors for pre-surgical testing and such because the transplant team wants that colon out of me ASAP. However, the tests and clearances are only good for 30 days and if the surgery isn’t done within that time, then they are wasted and have to be redone. Since we don’t have the funds now, I don’t know how we are going to be able to have the actual removal of the colon because it would mean that I would have to be there for like 5 weeks and we can’t afford it. So I don’t know if I should waste my time getting all the clearances and everything at this point even though I know that I need this surgery ASAP and they want to do it ASAP.
Ideally, the transplant team wants me to go through the week’s worth of appointments and then have surgery the following week on my heart because I need to have ports and lines placed into me in order to go for the surgery. I also need surgery because of the dense calcium calcifications in my coronary artery. They also want to try to give me TPN to help make me as strong as possible for the surgery because it is a very big surgery and I will need all the help and strength I can have. They then have it planned that 14 days after this surgery, they will then remove the colon. But like I stated before… I don’t have the funds to do all this right now so I don’t know if it is worth seeing all the doctors the week prior.
In addition, I am supposed to be seeing the endocrinologist because I really need a very important bone infusion that they can’t do here. The doctors are extremely afraid that I am going to get a life-threatening fracture. However, due to my jaw surgery and everything, I have to wait about 4 more weeks to have this infusion and therefore, I don’t know if it is worth going to the endocrinologist now or if I should just wait until I can have the bone infusion and do it all at once.
I would do anything to get my life back. This is definitely not the life that I thought that I would have. Never in my wildest dreams did I think my life was going to be like this or turn upside down like it has. I should be independent, a doctor, having a family of my own, etc. However, I am now unable to eat, unable to walk, living with my parents because I can’t really move out and care for myself, unable to work, etc. I live a life that is in constant pain 24/7 and I never get even a brief second of relief. I have no social life and I even have caused so many problems for my entire family, as we are in great financial hardships because of me. We really can’t afford anything. We haven’t been out to dinner or even on a family vacation in years. I can’t even remember when the last time we did because that is how long it has been.
I feel so bad for what I am doing to my parents because they are at the point in their lives that they should be enjoying themselves. Yet, they are stuck taking care of me, have no money to do that ‘enjoyment’, and they are working harder than ever. I am so scared because my dad looks so horrible and is working so hard and everything. Plus with his age… It’s freaking me out more because everyone on his side of the family dies early. They have been dying earlier and earlier from heart attacks and my grandpa died when he was 66. My dad is 61 and with him having all this stress and working so hard… He’s honestly a heart attack waiting to happen. If something ever happened to him, I would never forgive myself.
So… as you can see so much is happening and everything is chaotic. I don’t know what is happening. All I know is that unless we get some funds… going to Cleveland is definitely not going to be an option. So if you can please help me, I would really appreciate it. Plus… I need help more than ever in receiving the funds because I need to have this operation done ASAP because if I can’t get the “cleaning out” surgery every Friday like I need, I will be intoxicated and end up dying. So… please help me in any way that you can. Any help would be much appreciated… whether it is spreading my website (www.gofundme.com/FallonMirsky) or even saying a prayer.
Well… I guess that is about it for now. I am going to rest because I am not doing well. Thanks again for all your wonderful support and encouragement. I will keep you posted as to what happens. Hopefully everything will work out for the better.
Love,
Fallon
FALLON MIRSKY 
Leave a comment