FALLON MIRSKY

Please help SAVE MY LIFE!

September 26, 2014

10610771_10101234715552120_1201871962943722958_nHi-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This surgery will be very intense for me.

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

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

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

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

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

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

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

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

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

Love,

Fallon                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      `

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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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