FALLON MIRSKY

Please help SAVE MY LIFE!

September 20, 2014

10606336_10101274876005250_1891472278616781039_nHi—

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,
Fallon

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September 13, 2014

10547090_10101274906244650_4722876455866769601_oHi-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,
Fallon

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September 10, 2014

10646992_10101272589307810_3082326574675963917_nHi-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks again,
Fallon

 

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September 5, 2014

10551717_10101258354619240_3504572953572801051_oHi-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks again for everything!

Love always,

Fallon

 

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August 27, 2014

10548690_10101239971753650_3411997899923871008_o Hi-

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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

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

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

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

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

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

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

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

- Fallon

 

 

 

 

 

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August 20, 2014

10550008_10101241323315110_1859173337889895828_oHi-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks again for all your support. Until next time!

 

Love,
Fallon

 

 

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August 15, 2014

10548690_10101239971753650_3411997899923871008_oHey-

Well… I am officially home!! It has been a long two days, but I am officially home. However, I am having to go back to Cleveland on Sunday, August 24th, so honestly I don’t know why I should even bother unpacking. I am just going to enjoy this week at home. I am going to especially enjoy it because who knows what is going to happen when I go back to Cleveland. A lot has changed in plans! I just hope my body holds up for everything now!

Tomorrow is my usual Friday surgery. Going to get my intestines cleaned out because my entire GI system is paralyzed and therefore, nothing moves through it. I am getting intoxicated as a result of this and it is very likely that I can die from all these poisons spilling over into my bloodstream, as it is poisoning my blood, organs and even my brain. However, usually I am excited to go for this surgery and say “TGIF” because not only is it saving my life by trying to remove as much toxins as possible, but it is also making me more comfortable. Since nothing really moves in my GI system, I get so bloated and my abdomen gets so distended. I literally look like I am 9 months pregnant. I walk around the house waiting to either “give birth” or for someone to pop me!

In addition to the cleaning out of my intestines though, I also have to have the surgeons go down my esophagus and go into my stomach to do some biopsies. It’s all needed for the upcoming surgeries that are taking place in Cleveland. Hopefully everything will go ok, but I am scared because it is a double whammy tomorrow and my body is weakened already and has just taken a beating from this trip to Cleveland. Traveling is really hard on me and I literally just got home. I didn’t even have to time to rest and gain my strength.

Well… as I was saying, there has been a change of plans!! I was originally scheduled to have my colon taken out on August 25th, but due to how sick I am, there has been a change of plans. It just isn’t possible to do the surgery right now before some other surgeries take place first. It turns out that when I do have the colon removed, I will have to be hospitalized 14 days prior because of how sick I am. I can’t believe how long I will have to be in the hospital for… just to have my colon out. It will be at least 14 days prior, at least a 10 days in the hospital, and then I have to remain in Cleveland for at least another week to make sure that everything is OK and I am able to go home. However, after going for some more tests and meeting with the team, it was decided that I might be better going about it a different way instead of just jumping in and having the colon surgery. They thought I should have some other surgeries and procedures prior and then have it. So that is what we are doing.

This also scares me that I will have to spend so much time there because we don’t have the funds to do that. I know I sound like a broken record already and I know I am begging and pleading, but please help. We desperately are in need of help. We desperately need donations because we can’t afford treatment to save my life without your help. As it is, I already received a phone call from the Cleveland Clinic asking me to pay for the copayments and everything to the upcoming surgeries that I will be having and I didn’t even have them. They said that since I didn’t have the money today, I will have to pay it the day of surgery. Can you imagine?

I hate knowing that my life literally rests in the hands of others, but I am hoping that people will do what is right and help me! Just remember that I am appreciative of any donation and no donation is ever too small. I only wish there was a way to get on television or in the paper because this way I can maybe get more awareness to my story which will bring in more funds.                                                                    

It turns out that when we go down on August 24th, it will be for other surgeries and procedures that are very important. To begin with, I will need to have ports and lines put into me. Not only do I need them for the actual surgeries for the transplant and for the removal of the colon, but also I need it to actually buy me time!

I will be having surgery on my heart, veins, and arteries to put these lines and ports in. However, I have to make a decision by tomorrow as to which type of port and line I want to use because I have an option of 3 different ways to go. They are going to use these lines to have emergency access to my heart, give me fluids, give me blood, take my bloods, give me medications, give me food, etc. With having these lines, I won’t have to worry about being poked all the time to get blood anymore. I also won’t have to worry about swallowing pills so much because they can be given through the lines, which will make it easier on me as well. It also means that I can be given more potent meds because intravenous meds are always stronger since they go straight into the bloodstream. But a big plus and hope is that these lines will be able to supply nourishment to me.

I always thought that when the colon came out that I would be able to gain weight and hopefully be able to get back to a somewhat normal weight. However, I was told that the chances of that happening is basically nil. The doctors said that I am so far behind that I probably won’t ever be “normal” weight again. The point of the colon coming out is to make me “more comfortable” and to help buy me time until I have the actual transplant.

The real cure to this entire puzzle is to have the transplant. If I had the transplant, then I would be able to most likely gain the missing weight that I am missing and be more of a normal weight. I was kind of upset about this because I was hoping that the colon coming out would help me be able to eat again and able to gain the missing weight. After all, I hate the way I look and wish that I would be more normal looking. I look like an emaciated skeleton.

The doctors did say that the key to the puzzle and to keeping me alive is TPN. They said that I desperately need this in order to keep me alive and to hopefully buy me the most time. TPN is “total parenteral nutrition” and it is dripped through those lines and ports that they are placing into my heart. However, TPN is extremely dangerous and you can’t be on it for long. Therefore, it is really important that I get the transplant as soon as possible so that I can get off the TPN.

TPN is very risky. You can have mechanical complications from the catheters that will result in pneumothorax, vascular injury with hemothorax, brachial plexus injury or cardiac arrhythmia. However, venous thrombosis is one of the two most common problems that occur after central venous access is established. The other is infection. Venous thrombosis is associated with significant morbidity rates.

Having TPN is not a cure. It is only a “band aid” to help buy my some time until they figure something to work. Yet, I have had TPN before a couple of times and I have failed it. So we are not sure if it is even going to work this time around. We are hoping that it will though.

I have to decide which type of line I want to place into me. We are hoping that the TPN will work through these lines, but even if it doesn’t we still need it for other reasons. There are 3 choices that I have. I have a choice of a line that goes through the heart and jugular vein, one that goes through the sub clavicle and the vena cava, and then one that is called the PICC and that goes through the arm and then into the heart through the vena cava. Each comes with their own plus and minus. I am really tending to think I am leaning towards the PICC because it comes out of the arm and looks nicer, but if I go with the PICC, it will mean that I will have to have another line put into me such as a line that goes through the jugular and into the heart because this PICC line won’t be sufficient. But that is ok because it will only be there for the time I am having the surgery.  

In addition to this surgery, I am also going to have surgery to “clean” me out. I have lots of toxins in my system since my colon and GI system is paralyzed and even though I go every Friday for the surgery to “clean” it out, they are going to do a more invasive job because they are going to do it under general anesthesia.

Another surgery that will also be having is a surgery to deal with the infection and such that is lurking in my mouth. I have been on antibiotics and I have been continuing to suffer. I desperately need to have lots of surgery in my mouth and this way they will do it then.

 Finally, I had a CT scan during this past trip to the Cleveland clinic and it appeared that I am drowning in my fluids. So I will also be having my lungs cleaned out as well.

10560413_10101238797412040_7385412621066057572_oAt least when I met with the doctors and the anesthesiology team when I went to Cleveland, I got to meet with the actual “team” that would be in the room during the operation. Usually they don’t know the anesthesiologist who will be on the case until the last minute. However, I was fortunate enough to have the anesthesiologist say that he was going to take the case because of how difficult I am and how he met with me and knows the case and such. So I am really glad because I really liked him and felt comfortable with him being there.

So that appears all that is going on. Not to cut it short, but I am not really feeling well and I am having to get ready to leave for the surgery today. My right arm still hasn’t officially “woken” up and so I am still battling a sought of sleeping arm. Never a dull moment.

Thanks again for all your continued support and encouragement. I would definitely have not made it this far without you.

 Love,

Fallon

 

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August 13, 2014

10582887_10101238373621320_3675911024816906730_o

Hey-

Well I am officially in Cleveland! I finally made it here! What a day it has been. I can’t believe all that has happened today because my life is like a soap opera… never a dull moment. From the moment we left the house to start this trip… nothing went right!

I should have realized that today was going to be a bad day from when we first began our trip. Right from the beginning it seemed like this trip was doomed. We basically just made our plane and we are so lucky that we did because we couldn’t afford to miss it. We had appointments scheduled in Cleveland today and therefore, it was imperative that we made the plane because the next flight afterwards would have made us miss all our appointments. We hit absolutely no traffic whatsoever to the airport. However, just as we were approaching the airport, there was so much traffic because not only were there was emergency vehicles blocking off lanes so that they could take care of a car breaking down, but of course everyone passing in their cars had to stop and look! The way that there were emergency vehicles blinking and people were stopping and looking… you would think there was a huge accident or something. But guess what? There was really nothing going on. It just appeared that a car broke down or something. In fact, when we were at the skycap checking in our suitcases, everyone was even talking about what on earth that “hold up” was. But you know “New Yorkers”… everyone has to look if they see blinking lights! But thankfully we made the plane!!

What a trip we had though. Between the traveling, the massive infection that I am currently suffering from, and then my overall condition… I didn’t handle this trip to Cleveland very well. My disease really stirred up and my body really was shutting down on me. Even when we got to Cleveland, the impact that the traveling took on me was enormous. My dad could barely keep me awake. When we spoke to the doctors, the doctor said that it is because I am getting so much worse and I have all those poisons and toxins in my bloodstream and organs that are further complicating things. All those poisons and toxins are literally killing me and that is why I am in such need of having my colon taken out and of the transplant. I am weakening so much and I can’t tolerate anything stressing out my body… even a trip on a plane to Cleveland.

When we got to Cleveland, I really didn’t have time to rest. I couldn’t even open the two boxes that the front desk said that I had delivered for me earlier. Had to get straight over to the hospital. Thank goodness though that the hospital is only literally next-door to the hotel. In fact, if you think of the letter “I” the top and bottom of the “I” is actually the main hospital and all doctors’ offices. The middle part, which is the part that connects the two hospitals together, is the hotel. If you don’t want to walk outside to the different buildings, they are interconnected by skywalks.

So even though I am not technically “admitted” into the hospital, I am still really in the hospital. The Cleveland Clinic is one of the BEST hospitals in the United States and they really don’t keep patients in the hospital. They really try to minimize the stay of each patient in the actual hospital. They much rather treat you on the outside. In addition, with my disease, the doctors rather keep me out of the main hospital and being officially admitted as much as possible. That is why even when I am “home” … doctors try to keep me out of the hospital as much as possible. They are afraid that I am going to catch an infection or something because I have no immune system and so susceptible everything. They also are afraid of how I will be treated because I can’t be treated like a typical patient. The slightest wrong move can cause havoc on me.

I really came this week to Cleveland to have the final tests performed, to have the pre-surgical testing, and to meet with the team to make the final preparations. I have to meet with anesthesiology and internal medicine to not only be ‘cleared’ for surgery, but they have to see how they are going to put the Central Line in me because I can’t have this massive surgery without it. It is way too risky of an operation in order not to have it in me because it is the Central Line that used to give medicines, fluids, nutrients, or bloods.

I had so many appointments today including a CT scan of my lungs and a stress test of my heart because the doctors needed to know how my heart would function during this operation. After all, this operation is extremely dangerous and will take a huge toll on my body. It is the most dangerous of all transplants and is so rare and dangerous that only 6 hospitals really do it in the United States. So they really needed to see how my heart would do.

However, like I said before I was really ill from the trip and from everything I was suffering from. No matter where I went, I had a difficult time staying awake and therefore, my dad was literally carrying me everywhere. I slept before each test, during each test, and after each test. It was horrible.

One test that to definitely go for was the Stress Test. However, they had to stop it right before they gave me the intravenous drug because they said it was too “dangerous” for me. They said that they couldn’t perform this particular stress test because they didn’t know the exact amount to give me since I am so underweight and ‘small.’ They didn’t want to ‘kill’ me and they told me that the slightest amount that went over the amount that was needed could do me great harm. So they said that I wouldn’t be able to have this particular test and a different one would be needed to be used.

However, the problem is that I am supposed to be leaving tomorrow afternoon to go home after I have my other appointments. Therefore, I really don’t have time to have any time extra to fit in any other tests. So I don’t know what is going to happen. I really can’t afford to stay longer than tomorrow because we aren’t prepared to stay longer, as we don’t have the funds, medication, clothes, etc. and therefore we cant miss our flight. But then again I don’t want to postpone the surgery either, which is supposed to taken place august 25th because we definitely cant afford for that to happen with all the poisons running through my body and the way it is shutting down. So I don’t know what is going to happen. I guess I will have to leave it up to the “team” tomorrow when I see them!

It really stunk not being able to have the stress test especially because not only did I really need this test for the upcoming surgery, but also I couldn’t eat or drink all day because of it. So I went the whole day without eating or drinking for nothing!! I really wanted something too… especially since I was on the plane and everything, but I couldn’t have anything. To think… all that suffering for nothing! When I was done with the stress test, the doctors felt so bad for making me starve for no reason that they were willing to get me anything and everything to eat.

Like I just said, I have an appointment in the morning with my “head” doc and I also have an appt with interventional radiology. So we will see what will happen at this point.

To complicate matters more, my right hand is kind of “dead” and won’t wake up. I have gotten this before but it has always been occurring to my left arm and hand. The doctors don’t know what causes it and therefore, I get really scared because I don’t know how long it is going to last or if it is even going to get better. Fortunately the other times it has all improved, but you never know. All the times that this has occurred, I have woken up and it has felt like my hand has fallen asleep. Then I can’t wake it up and it is so numb and hard to move because it had fallen ‘asleep.’ It is almost like having a ‘dead’ hand. Then I get this tingly all throughout my hand like it is starting to wake up, but it just stays there like that… never getting better. In the past it has lasted a couple of days, but you never know if it will always be that way. I get so scared from it happening not to mention how debilitating it is because you can’t really use it like I need to.

In addition, we also don’t know if I am having a reaction to the antibiotic that I was given to combat the infection that I have. I noticed some red marks on my neck and shoulders this morning, but I thought it was just the way I was laying or maybe from rubbing it. However, when I looked in the mirror later on today, I saw that there was actually a rash going on. We don’t know how I got it or if it is actually related to the antibiotic. So we really don’t know what to do. We already know that this antibiotic makes me feel nauseous and such especially since it is such a high dose because the infection is so bad. They really have to knock this infection out because not only do I need to get rid of it for the upcoming surgery, but it can really severely cause a lot of problems and even potentially ‘kill’ me because I already have all those toxins, poisons, and bacteria running through my body from my failed GI system. So it is just making my body further weakened.

So I really had some day today!! It was really a tiring day and things were just not going well. Of course when I got back to the hotel, I still continued to ‘sleep’ and if it wasn’t for my dad waking me up at 7:30, I probably would have slept through the nite. However, my dad said that we had to go eat dinner and I had no choice. I pleaded with him to miss dinner tonight because I wasn’t feeling well, but of course I lost the battle because he insisted that I couldn’t afford to lose an ounce. So I was dragged to the restaurant to eat.

Just to finish up the wonderful day, we couldn’t even watch TV tonight. We ended up having a storm here in Cleveland that knocked out the satellites. My dad said to me “Better watch out that the power doesn’t go out too.” But I was like “Did you ever hear of backup generators?” So you know what he said? He was like “Maybe they don’t have!” I was like “I am sure that they do especially since they are a top-of-the-line hospital.

Oh yeah… just as expected when I got here my packages were here waiting for me. Dad couldn’t believe that I didn’t have them shipped to the house instead. But they are sooo cute. I keep cuddling with them. What a way to make my belly feel better.

Wanna hear something hilarious? We needed ice for our sodas and my oranges. So you know what my dad did? He went to the ice machine with a bag of ice on top of just filling up the regular ice bucket. He brought back so much ice that he emptied the entire machine. So me being my stupid self said to him “you better call the front desk and alert them to the fact that they have to refill the machine because its empty.” I was thinking that he should do that so that I could have my ice later because I knew I would need it. However, little did I know that all you had to do was ‘wait’ for the machine to make more? My dad was like “You don’t have to call… you just have to wait for the machine to make more!” I am so naïve!

To top everything off, there is a lot of press going on here since Robin Williams died. Apparently Robin Williams had 2 heart valves replaced here at the Cleveland Clinic and therefore, they are saying that this could have caused his death. They are saying it because according to the Clinic, “major heart surgery often leaves patients with depression, which can sometimes prevent you from leading a normal life.”

So that appears to be all that is happening. It’s going to be a busy day tomorrow (Wednesday). I just wanted to write a bit and let you know all that has occurred so far. I wonder what will be the outcome of the upcoming surgery because we are so close to having it done and yet we have all these complications. I know they won’t do the surgery unless the infection is definitely cleared up, but I am hoping that the scan won’t hold things up further. I also hope that they won’t have me make an additional trip here just for this scan because besides there is no time, I can’t afford it and it takes too much out of me. I get too sick from the traveling and I really can’t do it. I hope that the next time I come back here it is for the surgery.

Well… Thanks again for all your continued support and encouragement. Please continue to pray for me and I will let you know what happens! Thanks again for everything. I can’t tell you how much I appreciate all that everyone is doing!! Knowing that I have a “support team” really makes a HUGE difference in fighting this.

Love,

Fallon

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August 12, 2014

10296176_10101229093878000_4587876839072854262_oHi!

Well… I am writing to let you know that in a few hours I am off to Cleveland Clinic. I am only hoping and wishing that all goes well because I know that I have a long road ahead of me especially now. There is never a dull moment in my life. As if my life isn’t hectic enough, I was just thrown another bump in the road today that might have to result in the transplant being delayed. I am only hoping that it doesn’t though because I am literally running out of time. But you know MURPHY’S LAW? Well… it should be renamed to be FALLON’S LAW because anything that can go wrong will go wrong.

I can’t believe all that is happening! Never a dull moment in the life of “Fallon!” I am supposed to be leaving in a few hours and I am really not feeling well. I am sicker than ever because besides my usual illness, I just had emergency surgery today because I have a massive infection going on in my mouth and jaw.

I have been having some pain in my mouth, jaw, and teeth lately, but these past two days have really been horrible. It got to the point this morning that the pain was unbearable. For me to say that the pain was unbearable while on all my potent pain medications such as ketamine, dilaudid, methadone, morphine, etc., I wonder exactly how bad this pain actually is. This infection has to be MEGA if it was hurting me the way it was with all these meds. I really don’t complain that much when I am in pain because I suffer with pain 24/7. However, the pain that I was in this morning was so bad that I was hysterical. I knew that I needed help.

Thank goodness I went to the oral surgeon when I did. It turns out that I have a massive infection in my tooth and jaw. However, we had such a day dealing with it. Usually when I have to be worked on with something like this, I have to be under general anesthesia. Yet, we really didn’t have that as an option and all we could use was nitrous oxide and lots of novocaine. However, due to my condition, it was not helping me at all. They turned the gas all the way up and they gave me shot after shot. Even after 6 shots, they couldn’t get me numb. I was screaming while they tried to work on me. I felt so bad for my mom because she was the one trying to hold me down. I was in so much pain that I was literally holding her hands so tight that I was drawing blood. Her hands are all swollen now because of all that happened.

But like I said before thank goodness we went to the surgeon when I did because if I didn’t I probably would have died. The surgeon was on the phone constantly with the Cleveland Clinic because he of course needed their input since they are in charge of my condition and I am going to be undergoing massive surgery with them. The Cleveland Clinic said that with all the toxins and poisons going through my body because of my failed GI system and such, I am lucky that I am alive still.

Due to my failed GI system, I have all these toxins and bacteria leaking from my GI system (especially my colon) into my bloodstream and it is spreading to all my organs including my brain. As a result, it is literally poisoning my body and causing me to die. That is why I need the transplant surgery at the Cleveland Clinic as soon as possible. We have to stop these toxins from poisoning my body because it will end up killing me. That is the reason why my brain is “foggy” and why I am sleeping a lot.

So to have this active infection on top of being poisoned by this bacteria and toxins that were already occurring, I am in really bad shape. They immediately wanted to put me on high dose meds in order to help contain the infection. Yet, with all the meds that I am already taking, it was extremely difficult to do. I take over 50 pills daily and it was very difficult to find a drug that wouldn’t interact with the others. They also needed to give me pain meds as well, as the current pain meds that I was already taking weren’t cutting it. So the surgeon has been talking to all my doctors trying to figure everything out. What a problem!!

A bigger problem though is this infection and how close we are to transplant, as I am supposed to be going in the morning to Cleveland Clinic for pre-surgical testing and to finish meeting with everyone so that I can be prepped for the upcoming massive surgery on August 25th. At that date, they will be removing my colon. It is a massive operation, which will take over at least 10 hours to complete. However, after the colon is removed, all bets are off as to what will end up happening. They don’t know if the colon is the bulk of the reasons why my body is being poisoned or if it is another part of the GI system that is causing it. Depending which organ it is… it will determine how soon I will have to undergo the huge multivisceral transplant. But they were hoping that I would be able to get my colon removed and they would be able to wait a bit to have the transplant so that they can try to get me a bit stronger for the transplant because it is a very dangerous transplant to have. They are also hoping to be able to wait a bit so that they can ‘learn’ all that they can about their ‘enemy,’ which is my neurological disease and autonomic dysfunction.

Like I stated in the previous message, my doctor wants to know his ‘enemy’ before he transplants. He is an excellent surgeon and wants to be prepared for anything that could happen. Therefore, has sent out other doctors to do research on my illness and he is even calling other doctors who are knowledgeable out of retirement. Doctors say that he is like a ‘terrier’ in the sense that once he gets his teeth into something, he doesn’t let go or stop until he gets what he wants.

It is really important to know all that he can about my illness because this transplant is so very dangerous. In fact, it is the most dangerous transplant to have and only 6 hospitals in the country do it. I need a new stomach, small and large intestine, pancreas, and spleen. However, if they find that the toxins and poisons are coming from something else after the colon is removed, I will have to transplant immediately.

After speaking with the Cleveland Clinic, they said that I would not be able to have the transplant or even the massive operation that I am scheduled for to remove the colon at the end of August. This surgery is extremely dangerous as it is and they expect to have lots of complications already as well as an extremely difficult time recovering from it as it is… they don’t need further complications. So the surgery might be cancelled unless I can overcome this infection.

This infection is very serious that I have in my mouth. The problem is also that I don’t absorb medications like a normal person. So despite being on a high dose, we don’t know how much I am actually absorbing. I can literally take pills and then 12 hours later when I vomit, I can throw up the entire pill in its “whole” form so it isn’t dissolved. In addition, I am extremely hypertensive so that any “minor” problem is a “huge” problem. I am not like a regular patient, as everything in my life is so much magnified.

So we are keeping our fingers crossed that this infection will go away and not stand in the way of the surgery. It is just another bump that is added in the road along with the funding bump that we have to get over. But in the meantime, we are heading in the morning to Cleveland Clinic to finish everything so that we are all prepared for the upcoming surgery that will hopefully be taking place the last week of August… providing that there is no infection and we have the funds.

So our flight leaves in the morning and it will be a busy 48 hours. We have so many doctors to still meet because since my case is so complicated, it takes an entire team in the operating room to handle it. They literally are going to have a doctor in every specialty in the room. I am also going to be meeting interventional radiologists because even they will be needed to put a central line in me for this surgery.

Besides meeting with the docs, I am also having some final tests performed so that they are fully prepared. Besides the usual tests such as the CT scans and x-rays, I am also going to undergo a stress test so they can really test my heart out. They already told me that I am going to hate this test because it is probably going to cause the autonomic dysfunction to stir up. Gosh… sometimes I think the autonomic dysfunction is the worst part of the entire disease.

What stinks is that I can’t eat or drink absolutely anything before these tests and I will be flying on a plane! I don’t know how I am going to manage especially not drinking when I am going to be in the air. The tests aren’t until 2 PM and therefore, I am literally going the entire day without eating or drinking especially since I am going to be leaving for the airport at 4 AM. Gosh… I am going to be dying of thirst and hunger. Some might think it is no big deal because I can’t really ‘eat’ or ‘drink’ anyway. But it is a big deal for me because even though I really can’t eat or drink because swallowing is extremely difficult and I also vomit it back up, at least I get something into me. Now I can’t get ANYTHING into me. I always find that when you are told you can’t have something, you are always more thirsty and hungry than if you weren’t told you couldn’t have it.

10606517_10101235179617130_3653604106255619658_nSo we are off. Just wanted to let you know the latest! At least I know when I get there, my SNUFFLES will be there waiting for me. There is a white SNUFFLES being sent there thanks to my mom. Even though she can’t be there in person… she is sending me a bear so that I can always have something to hug. This way whenever I need a ‘hug’ from her, I can hug the bear.

I am in love with GUND bears and I am in the process of collecting all the different GUND SNUFFLES. I love the SNUFFLES because besides them being extra cute, they make such great “cuddlers”. With my stomach beign the way it is… they are in the perfect shape and are made in the perfect way to hold so that it helps with the stomach pain. I only wish I still had my original SNUFFLES. The SNUFFLES today is celebrating the 30 year anniversary.

10495122_10101229095195360_5675982325829722224_oIn addition, I wonder if I am going to see another one of those “waterbugs!” Gosh… I will never forget how I was walking out of the hotel when we were leaving for the airport and one of those things ran right in front of me. It scared me so much. I never saw a bug that big! Of course I had to take a picture of it and show my dad. My dad being the expert that he is in pest control told me immediately what it was!

I can just imagine how much this trip is going to cost this time. With all these doctor appointments and tests… I don’t know how we are going to afford it and then be able to come back about week later for the huge surgery, which will entail us being in Cleveland for at least 3 weeks. That is why it is imperative that I get as many donations as possible because we cannot afford it by ourselves.  So please continue to spread the word of my website at http://www.gofundme.com/FallonMirsky so that I can receive as many donations as possible.  Remember… no donation is ever too small.

Please continue to pray for me because I am going to need all the prayers and support to overcome this. I need to be stronger than ever because I have to beat this infection now too!

Thanks again for everything.

Love,
Fallon

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August 9, 2014

475519_10101228526974080_5778732194525628730_oHi-

I just figured I would write and let you know the absolute latest because I officially received notification from Cleveland that part one of the transplant is ready. Yup!! I received the call tonight!! I am so very nervous and I to be honest, I really don’t know what is going to happen because of course this means I need to get there ASAP and we don’t have the funds on hand. My head is literally spinning so fast around that I don’t know how to stop it. I am so scared. I am scared to have the surgery because I know how ‘massive’ this surgery is and scared not to have it done because I know that without it I will die.

I can’t believe the phone call finally came in tonight to come out to Cleveland for the first part of the transplant. I knew that it was ultimately going to happen, but I honestly didn’t think it was going to happen so fast. I mean, I didn’t expect it to happen so soon especially since I literally just got home from the Cleveland Clinic a few days ago. I guess this is what the doctors at the Cleveland Clinic meant when they said that what I was going through and having was “life threatening” and a very HUGE “emergency.”

When I had went to the Cleveland Clinic this past week, I had found out so much information… more information than I had ever known. I knew that I was sick before I went to the Clinic, but I never realized how ‘sick’ I really was until I went. When they explained everything to me, I finally understood everything that was happening in my body. There were even a lot of misunderstandings that were occurring in my disease and body because I went to doctors that were not as knowledgeable as the doctors that I am going to now in the Cleveland Clinic. Cleveland Clinic is absolutely one of the BEST hospitals in the country. From actually attending the hospital, there is no question in my mind why that is the case. The entire team of the hospital from the nurses to the staff to the doctors is completely unbelievable. They are so nice and knowledgeable. They don’t just treat you like another patient. They actually are about each and every patient. They know things about illnesses and such that no other places know about. Therefore, they take on cases that no other places will. No wonder it is the Cleveland Clinic that is known for ultimately saving people with life-threatening diseases. I only hope that I will be as fortunate.

When I went to see them a few days ago, I finally learned that it wasn’t the medicine that was making me so ‘tired.’ Besides all the pain that I have been suffering from that has been unbearable, I have been really tired lately and been sleeping a lot. I have also been having a feeling of my brain feeling a bit “cloudy” as I didn’t feel like I was thinking as clearly. A lot of doctors have been attributing all that to the medications that I have been taking, as I do take more medicine than anyone can believe. I take over 50 pills daily and it would certainly kill a horse. Doctors are even amazed that someone the size of me could withstand taking so much. But even taking this amount of drugs, it doesn’t even really have any affect on me. Therefore, I did find it strange that the meds were supposedly causing all this ‘tiredness’ and ‘cloudiness’ all of a sudden when I have been on them for such a long time. It just didn’t make sense. It wasn’t like we really changed anything. You know?

Well… it appears that due to my illness and severe gastroparesis, my organs have basically ‘died.’ My GI system doesn’t function any longer and in fact, I am being intoxicated and poisoned by it. It turns out that my colon is especially toxic and all the toxins are pouring over into my bloodstream and spreading to the rest of my body, which is causing my body to shut down and fail. The toxins are causing me to have cirrhosis of the liver and it is even going to my brain. That is why I am so tired and feeling so cloudy. As it is getting worse and worse, I am feeling worse and worse. The more it continues, the worse it will get and it will ultimately end in coma and in death. Therefore, I desperately need a transplant to get rid of these toxins before it is too late because they are poisoning me and will kill me. Yet, a transplant of the GI system is extremely dangerous. In fact, it is the most dangerous transplant you can have. Only like 6 hospitals in the country perform this operation. I need a new stomach, small and large intestine, spleen, liver, pancreas, etc.

However, since I have this autonomic dysfunction and also this neurological disease, we don’t really know how my body is going to function to the transplant either. Therefore, the surgeon is kind of hesitant to transplant me because he doesn’t really know and understand completely the “enemy.” Yet, he has told my dad and me “if I was his daughter, he would transplant me immediately.” Yet, he said, “since he doesn’t know the enemy completely, he wants to take it slow and do it in steps, as he learns as much as he can about how my body will react to the transplant and what exactly to do in terms of precautions because of how ‘sensitive’ and reactive my body is to everything that is done. “ As a result, he is going to be taking the colon out first because that appears to be the most toxic organ of the body at this time while he learns as much as he can about my illness.

Therefore, the first part of the transplant will be removal of the colon. I will just be missing the colon while we wait for the FULL transplant, which I will then receive the other organs. He will also be learning all that he can about my illness during this time. The doctor is doing tons of research. In fact, he is actually sending out other doctors to do research as well on my disease. He is calling all the top doctors in the world regarding my illness and even calling doctors that are in “retirement” out of retirement that might be familiar about my illness. The doctors all him a ‘terrier’ in the sense that once he gets his teeth into something, he doesn’t give up. I am only hoping that he doesn’t give up on me because I am so very sick.

The doctor is especially awaiting for one particular doctor to get back to him. I gave him a few doctors to contact that might be able to help him, but the doctor is particularly waiting for Dr. Schwartzman to call him. We are only hoping that my doctor, whose name is Dr. Kareem, will be able to contact him because he has retired this year. Dr. Schwartzman is supposed to be one of the top doctors in my neurological disease and was practicing at Hahnemann University in Pennsylvania. When you wanted to see him, you had to literally wait at least 2 years to see him because that was how long the waiting list was to see him. I had seen him, as he was my doctor as well and Dr. Schwartzman also confirmed when he had seen me that I was one of the worst cases that he has ever seen in his life. As he was also doing research in my illness, he also took my blood so that he can use me in his research. He had told me that “we may not necessarily be able to help you, but you may be able to help others in the future.” So… of course I had no objection of giving him my blood to study because I would do anything to help others and so that others wouldn’t have to have the same misfortune of suffering from the same miserable fate as me.

It turns out that Dr. Schwartzman had just retired this past summer. However, it turns out that it is essential that Dr. Kareem talk to Dr. Schwartzman because even though I have given him other doctors who might be able to help him, it is Dr. Schwartzman who actually did research and found a clear link to what is happening in my GI system to my neurological disease and autonomic dysfunction. He actually saw a linkage between the toxins and the intoxication that is occurring in my body to the neurological illness and autonomic dysfunction and therefore Dr. Kareem wants to know about this and ultimately what will happen when I am transplanted and everything. I knew that Dr. Schwartzman did research in my illness, but I never knew that he actually found a linkage in this. So I am only hoping and praying that Dr. Kareem will be able to speak with him because he can be a very important piece to the puzzle.

Dr. Schwartzman also knows and understands how my disease spreads. Abnormal signals cause change in neurons and causes the loss of magnesium blocks. This causes calcium to enter the cells. When this occurs, very bad stuff happens and the disease manifests and spreads. Dr. Schwartzman is a crucial piece to my illness because he discovered how important Ketamine is to be given during the surgery because it is the only medicine that will help keep the neurological disease and autonomic dysfunction at bay. It is an NMDA receptor that will block the disease from spreading.

But in the meantime, I need to definitely have the colon taken out, which is the first part of the transplant because I am literally dying. I am literally being poisoned and if it doesn’t come out, I will soon die because it is literally poisoning my entire system. However, we don’t know how my body will react. We don’t know if all the toxins and poisons are just coming mainly from the colon or if it is really coming from the other organs as well. If they take out the colon and they find that the toxins are coming from the other organs as well, they will have to then transplant immediately. So all bets are off between how much time they will have after they remove the colon and how much time they have for the rest of the transplant to occur. The doctors really have no idea how my body is going to react or what is going to happen after the colon is removed.

So I knew that the colon had to come out as soon as possible because I would die otherwise, but to be honest… I wasn’t expecting it to be so soon. I literally just got back from Cleveland a few days ago… not even a week and I am already getting the call to come back for the surgery. I am so scared. I am scared because I don’t know how on earth we are going to afford this. It is so very expensive and we don’t even have the funds to go back to Cleveland let alone stay in Cleveland for the surgery and have it. Even though the surgery is somewhat covered by the insurance plan, we still have copayments, deductibles, living expenses while we are there, traveling expenses, etc. I don’t know how we are going to do this especially since it isn’t just a matter of being there one day. Instead, we got the phone call that they want us back on Tuesday for appointments for pre-surgical testing, which will be taking place that day and on Wednesday. They will then allow me to go home and I will then return on Sunday, August 24th to have the massive operation. When I come for the operation, they want me there for about 3 weeks about. I don’t know how on earth we are going to afford it especially since my dad won’t be working during that entire time, which means no income at all.

Gosh… when I got the call today, they told me that they needed me the 12th for testing for the upcoming surgery. When they said that, I automatically thought that they meant September 12th. Little did I know that they meant August 12th, which is only literally in a few days. How on earth am I going to come up with the necessary funds, make the traveling arrangements, and get there in such a short amount of time. I hate Fridays because it always seems like all the big stuff happens on Fridays because you can’t do anything really on the weekends. I really can’t contact doctors or make plans or do anything until Monday and by then… it is literally too late because I have to really have all arrangements made by then since I have my first appointment on Tuesday afternoon. I have no idea what we are going to do. I am so scared but all I know is that we have to find a way of getting funds. That is the priority at this point because we need plane tickets, hotel arrangements, etc. Obviously they aren’t going to give me those for ‘free’ or because my name is “Fallon!”

So we are really scrambling looking for funds and hoping that we will receive some donations. They are so desperately needed. If you can please spread the word that I need to get to Cleveland for part one of this massive transplant surgery, I would really appreciate it. Of course my fundraising website is http://www.gofundme.com/FallonMirsky. NO donation is ever too small and all donations will be MUCH APPRECIATED!!

Speaking about this massive surgery, I am really really nervous. I spoke with the doctors today and I told them how nervous I am. I told them that I don’t doubt their credentials or their ‘ability’ but I am really scared about how my body is going to react and such especially since my body is so ‘sensitive’ and reacts to literally everything. I am especially scared because I know how dangerous this surgery is and how it is really life threatening. All I hear from all my other doctors and other doctors who my dad speaks to is how “massive” this surgery is. In fact, my dad’s cardiologist even told my dad “to prepare just in case things go in the other direction and things don’t turn out so good.”

It is so dangerous that they are putting lines in me everywhere. I told the doctors that I have had surgeries before and I never had to have lines put in me like they are doing now. But the doctors said that this has to be done because I never had surgery like I am having now. They keep saying how “This is the most ‘massive’ surgery I have ever had!” I keep saying that if I hear the word “massive” one more time I think I am going to go through the wall. I can’t hear it anymore. Therefore, they are going to be putting in central lines and everything. Thank goodness I will be technically ‘asleep’ when they do this because this is not the most pleasant thing to occur.

A central line is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood over a long period of time, usually several weeks or more. They are hopefully going to be able to use just a catheter in the arm that will be threaded into a vein and go until it reaches a large vein near the heart. They are definitely going to need it for ‘access’ for medicines and fluids, but they are also going to try to give me TPN as well through this. I have had TPN multiple times in the past, but I have failed it. However, I never had TPN done at the Cleveland Clinic and I am not working with Dr. Steiger, who happens to be the founding father of TPN. So, we are going to try it again since he happens to be the most knowledgeable and best doctor in getting TPN to work. The worst thing that could occur is that it doesn’t work, but at least we will give it a shot.

The doctors would love to be able to have it work because of how small and fragile I am. They would love to give me nutrients before the surgery and afterwards because it would help give me strength and help me recover. This is huge surgery and I will need all the strength that I can have. I will definitely have a huge road ahead of me with this surgery.
This surgery is hard on anyone, but it is especially going to be hard on me considering the fact that I have the neurological disease and autonomic dysfunction. Due to my neurological disease, I have a hard time taking a deep breath, as I have Dystonia of the chest wall muscles.
I am only hoping that while this first part of the transplant is just to remove the colon, I am only hoping that I won’t have to have a colostomy bag. I am deathly afraid of having a bag. When I told the doctor how I really didn’t want a bag, the doctor said to my dad and me “he is not a bag guy!” Of course my dad got the joke immediately, but I was a little delayed on the joke. The doctor said that I have a 99.9% chance of not having a bag because he really would hate for me to have a bag because it would most likely only complicate things. It would lead to another surgery and could lead to another potential complication and can lead to more chance of infection and other things. But nothing is 100% and he said that even though he doesn’t foresee it happening and hoping it won’t, if it did have to happen… it would only be temporary. So at least that is a good thing because I really didn’t want one. At least I also know that the worst-case scenario of getting one is that it is only ‘temporary’ and it will go away. That is another reason how I know the Cleveland Clinic is so amazing. They are the only people who are willing to do this surgery on me. Also, they are going to be doing it without a bag.

I also asked the doctors how they are going to ‘prep’ me for surgery because obviously they can’t clean my bowels and such. Usually when people go for GI surgery, they do a whole bowel-cleansing regimen. Yet, in my case, it won’t work because my GI system is essentially dead.

So the doctors said that they really don’t even want to do anything that is going to ‘stress’ my body out any further than it is going to be during the surgery. They know it is going to need all its strength and everything for the surgery and therefore, they don’t want to waste trying to empty by bowels and everything by having me drink stuff or through enemas or anything like that. Therefore, they rather manually do it during the operation. It is a bit more risky because I will have all that other stuff (i.e. food, meds, etc.) to deal with and it could harbor additional bacteria, but this is the best way to go.

I am really keeping my fingers crossed that things go according to plan and things will go as ‘smoothly’ as possible. The operation is over a 6-hour operation. Yet the doctors have even said that they don’t know exactly what will happen after the colon is removed because it will change everything. I am putting all my trust into them because these doctors and the hospital seem like the best place to be. When I have spoken to other patients, they have said how “great” this hospital and doctors are. They have even said that it is only this hospital and doctors that have SAVED their lives. If it wasn’t for this hospital, these patients claim that they wouldn’t be living. I only hope that I am as fortunate. After all, this hospital takes on cases that no other hospital will. They are known for doing famous surgeries that no other hospital has done such as the face transplant surgeries and others. They do things there that you would never imagine or ever hear of. So I am really trusting them with my life.

When I spoke to the other patients, they have nothing but praise for the Cleveland Clinic. They said that the hospital and staff is simply amazing. Of course I will be kept in the ICU. The ICU is supposed to have a ratio of 2 patients per patient. Each patient is also supposed to have his or her own room and there is a pullout sofa for their caretaker. I am really glad about that because I am hoping that my dad will stay with me in the hospital because I am really petrified to stay alone. The patients say that the rooms and the care of the hospital is like being in the hotel. They said that the nurses are very attentive and they don’t make you wait for anything. They even go around massaging you so that you don’t get stiff and everything. They said that they do whatever they can to make you as comfortable as possible.

When I go for the surgery, unfortunately both my parents can’t be there together. We don’t have the money to have both parents to be there and therefore, my dad will be with me while my mom stays home. I am scared for both. I am scared for my dad because he will be there alone and if something should happen, I don’t want him to be alone. I am also scared for my mom because she is left at home and not knowing what will be taking place. She will be blinded and only left to knowing what is known by the telephone ringing. I only wish I could have both my parents there especially since it is so dangerous and everything, but I know that it is not going to be possible. But I know that even though both my mom and dad won’t be there together, I will be in constant contact with my mom.

Not only will I miss my mom, but I will miss my pets as well. I literally have to pick up my life and go to Cleveland. I will have no comforts from home except for my dad. But thank goodness I will have my dad. My dad is not only my “dad,” but he is my best friend. I know that he won’t let anything happen to me. Thank goodness for SKYPE though because at least I will be able to be only a video chat away from the comforts of home. Perhaps that is one of the reasons why Cleveland Clinic is so nice. They know that patients come from all over the world to this famous place and they leave their comforts of being at home. Therefore, they want the hospital to be as “comfortable” as possible for each patient and to feel like “home” as well!!

So like I said before… I am supposed to be heading there this week, as I am going to have to meet with interventional radiology and anesthesiology this week to go over everything. I will also have to have all my pre-surgical testing as well. However, like I said before, it is of course contingent on the fact that I have the funds because as of right now there is no funds available especially since we just back from Cleveland a few days ago and we have had no time to “regroup” our funds together. My dad hasn’t really been able to work much since we gotten back and we haven’t really made up for him missing the work that he missed when we were gone last week. To make matters worse, this is also his “busy” time of the year and I feel really bad making him miss work. This is the time when he makes the most of his money and if he isn’t here to work, then obviously the money isn’t going to be made. I know how desperately we need the money too because we literally can’t afford any of our bills. The bills have snowballed out of control and we can’t pay for my treatments anymore. We can’t even pay our mortgage and even have difficulty putting food on the table. So, we know how important this time of year is for us because of how much money can be made. If he misses it, it is missed until next year. So I don’t know what is going to happen. I just feel really bad because I don’t want anything to happen to my family because of me. They have suffered enough because of me.

So the schedule is supposed to go like this if all goes according to plan… we are supposed to be leaving Monday or Tuesday at the very latest to go to Cleveland. We have appointments scheduled at 2 PM on Tuesday and therefore, we have to be at the hospital by 1PM. Therefore, it is really best if we leave Monday, but that also means that it is a day sooner and we don’t know if we can afford it or that we will be able to arrange it since every day technically counts since it is so soon and we need to make so many arrangements. I don’t even know how we are going to make all these arrangements by Tuesday especially since we know how expensive hotel and plane arrangements are when you do it last minute. We are even hoping that they have openings because of how last minute it is.

So we are meeting with the team Tuesday and Wednesday. I will be having various final testing, meeting with interventional radiology because they will be putting in the central lines and will need to be on hand for various other procedures, meeting with anesthesiology, and meeting with the team, which includes my doctors and surgeons. I will then hopefully be able to go home first thing Thursday morning. I need to get home because I have my usual surgery scheduled for Friday at Mount Sinai. I will then finally return on Sunday, August 24th, which will be when I will be admitted for the huge surgery. I will then have to be hospitalized after the surgery for 1-2 weeks and then I will have to remain in Cleveland for about 1 week afterwards to make sure that I am well enough to go home. Of course this is if all goes according to plan. However, if they find out that the toxins are coming a lot from other organs, I will have to undergo the transplant as soon as possible, and I don’t know if I will be kept there or allowed to go home and they will wait a bit. They won’t know until they see how I do with the colon out.

I have to go for my weekly surgery at Mount Sinai because I not only need to have my intestines cleaned out because of the toxins, but I am also scheduled for an EGD. If I don’t go for it on Friday, it would mean that I would have to have it done in Cleveland as well, which would mean staying another day. So the doctors have allowed me to do it at home so that I don’t have to stay another day.

It is going to be a long two weeks. But hopefully everything will be ok. In the meantime, I have my mom’s birthday today. I am going to try to be as happy as I can be under the circumstances. I bought her a cake and I am going to try to make it as special as I can. I would love to be able to take her out to a restaurant for dinner or buy her something really special, but unfortunately I don’t have the funds to do that. I also can’t really eat at a restaurant and that really makes going out to dinner to celebrate her special day an impossibility. I feel so bad because she hasn’t gone out for dinner in the longest time. It would be great to go out to a restaurant to eat especially to celebrate such a wonderful day. But hopefully I will get well soon and when I come back from the Cleveland Clinic I will be able to go out all I want to dinner because I will be able to eat again. Hopefully this is the start of my miracle.

So… this is the latest news. I am extremely nervous… I am not going to lie, but I know that this has to be done because otherwise I am going to die. They always say that time changes things, but in actuality… you have to change them yourself!! That is why I need to get to the Cleveland Clinic and help myself ASAP. Life is like an ocean. You got to keep swimming.

Life is like a swimming pool. You dive into the water, but you can’t see how deep it is. But I know that you just have to keep swimming no matter what and as long as you do that… everything will be ok. However, unfortunately, me staying afloat and able to swim is all contingent on receiving help from others.

Like I said before, all this is contingent on the availability of funds. Please help me. Please pray for me. Please help me raise as much funds as possible because I desperately need this surgery as soon as possible. Please spread my link at http://www.gofundme.com/FallonMirsky and help me raise as much money as possible so that I can get to the Cleveland Clinic to have this operation.

Thanks again for all your encouragement and support.

Love,
Fallon

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