FALLON MIRSKY

Please help SAVE MY LIFE!

July 27, 2014

10517235_10101217013587000_49235970817709470_oHi!

I figured that I would take this opportunity to write and let you know that is happening because not only are we about a week away from leaving to go to the hospital, but we also have a lot of news to share, and something really bad has recently happened. So… I figured that I would write now and let you know what has been happening because things have not been going well and we did recently have a little emergency.

I really have not been doing well. I know I always keep saying that, but that is really the truth. I always keep thinking that it really can’t possibly get any worse. But somehow… it continues to always get worse and worse. I honestly don’t know how much more body can take.

Sometimes I wonder how my body is doing this. I know for one thing that I am not the only one wondering this. The doctors have said that they would have thought by now that I would have been dead. No one expected me to live this long. In fact, the doctors have even stated that they don’t even know how I am even living this long. My body is like a marvel. It is defying all odds. It just keeps on taking a beating and yet it keeps on ticking.

I am on so much medicine to try to make me as comfortable as possible and yet… it doesn’t do anything for me whatsoever. Yet, the amount of medicine that I am on is enough to kill a horse. I am serious in that. Anyone else would never be able to tolerate the amount of medication that I take. I take so much and yet… you can’t even see it making a mark on me. Even when I go for surgery or anything… the anesthesia has to be so high because I am so tolerant of it because of all the drugs I am already on. Even when I go to the dentist, the dentist even has to be careful because novocaine and laughing gas doesn’t even have an effect on me.

Sometimes I wish that my body would just let go. I am tired of fighting. I really honestly don’t know how much more of this I can possibly take because I am so tired of fighting… both physically and psychologically. The pain and suffering is just getting to be way too much. It is unbearable. Sometimes I call my body “stupid” because it just doesn’t want to give in. No matter what happens to it or how much is done to it… it keeps on going.

However, strange things keep happening. I know I am getting worse and such because not only am I suffering in pain worse than before, but other things are happening as well. My sense of smell has changed and so has my taste. Nothing tastes right or smells right. In fact, everything that I eat makes me nauseous and sick.

In addition, I have also been going to the “other” side a lot. I know I sound crazy, but believe me… it is something that only the dying can really understand. People say that when they die that they see a bright light or other stuff. They are not lying. I have been going to these most peaceful places. There are even bright lights and everything. I know my time is coming to an end and I know that when I do go that it will be to a very peaceful place because when I am there, I really don’t want to leave.

I have been not only suffering in pain worse than ever, but I have been having such a difficult time breathing. I am aspirating like crazy and it is basically getting impossible to breathe. I literally feel like I am drowning in my fluids in my lungs. It is really hard on me too because I am so very thirst and the more I drink, the worse I feel. Yet, it is even at the point now that I am choking and having a hard time breathing even without drinking. Due to my GI system not working, I can’t absorb anything and as a result, I am dehydrating like crazy. I am so thirsty and the more I drink, the worse of course I feel. But no mater what I drink… I just can’t quench my thirst. It really stinks. Then when I drink that one glass too much… I have to suffer with the aftereffects such as the autonomic dysfunction because I will literally heat up and becoming all “prickly” all over, I will become all distended and look pregnant, and I will feel like I am having trouble breathing even more. It just plainly stinks.

10463860_10101215995033190_2452119877790491004_oI have also developed a lump in the back of my knee. We are unsure what it is, but it is extremely tender. I had a lump in the same leg, but it was lower down in my calf. It was also tender. This is the leg that has the disease worse than the rest of my body. We were very worried that it was a blood clot or something, but the doctors were not sure what it was. At any rate, the lump that was in the calf has since disappeared, but when I went for the ketamine infusion the other day, I got up and felt this pain behind my knee. It turns out that I now have basically that same kind of tender and swollen lump that I had in that calf behind my knee. We really have no idea what it is. We really don’t even know if possibly it is the same one as the one that was in my calf and it possibly moved. I am such a medical wonder.

I have also been feeling worse in my intestines. I am becoming more bloated than ever and my intestines are becoming more dilated than ever. I keep filling up with air and the only way things will pass through is if I have the weekly surgery that I have on Fridays or if I am lucky enough to be able to manage to manipulate it through with my hands. But it is getting harder and harder to manipulate the air through my intestines and get it out with my hands. I am so uncomfortable and keep walking around like I am 9 months pregnant and ready to give birth. I keep wishing that someone would just “pop” me already!

It is pretty sad that I always look forward to Fridays. You know the saying “TGIF”? Well I couldn’t agree more with that saying. It is pretty sad that the highlight of my week is going for my weekly surgery on Fridays to get “vacuumed” and suctioned out. I just can’t take it anymore. It is unbearable. The doctor has remarked though that I am worse than ever in that aspect too. He said that I am filling up more than ever with mucous and my intestines have been more dilated than ever. I desperately need help.

To make matters worse, I have recently also been coughing up blood. So the last time I went for the weekly “housekeeping”, he also not only vacuumed out my intestines, but he did an endoscopy as well to see what was happening down the esophagus as well. My esophagus is getting worse now as well because the pills are getting stuck worse than ever. The doctor literally had to go in and remove the pills because they were just “sitting” in the esophagus and wouldn’t go anywhere. After all, my esophagus is basically paralyzed as well. That is why I get no peristalsis in that as well and I get no swallowing with anything thicker than water… even baby food. Even when I had water, it showed no “swallowing.” Something really needs to be done!

Wanna hear something funny though? When I had surgery this past week, the anesthesiologist actually let me push my own meds. They brought me into the OR and of course they let my dad come with us as well. My dad has special permission to come with us and stays with us too until I fall asleep, which is something that is normally not allowed. Yet, they all know me there and since I am so sick and there every week and such, they let my dad come in with me.

Anyway… the anesthesiologist was giving me certain drugs through the IV to prepare me to go to sleepy land and he let me push them into my own line. I was literally pushing in my own Lidocaine, Fentanyl, flush, etc. My doc couldn’t believe it. He looked up and saw what I was doing and he said to the anesthesiologist, “you’re letting her push her own meds?” He was totally in disbelief. I was in disbelief too but the anesthesiologist said that this way I would be able to do it at the rate I wanted because I can’t tolerate IVs. I am extremely hypersensitive and can feel the littlest amount going through the IV. It is like shards of glass going through my veins so the anesthesiologist thought it would be better if I did it and this way I could do it as slow as I wanted.

But to make matters worse, we ran into a HUGE problem when we went for surgery this time. We had a real big emergency this time. My blood pressure is normally really low, but apparently it really dropped into the danger zone. They got my dad and told him but wouldn’t tell him numbers or how bad it really was. They just said to him that I’m in ‘danger’ as my blood pressure is really dangerously low. They had to give me fluids and meds to try to bring it up. When I was waking up they were still trying to work on me. I tried telling them that I normally have low pressure but they said that it was so dangerously low that of I got up I would pass out. They wouldn’t let me even move because of how low it was. They wouldn’t even tell me how know the numbers were but I know the top number was one time in the 40s. I heard them say one time 40 over 20. My body just keeps having autonomic dysfunction.

10371343_10101217011576030_6848649766889587289_oBut at least we are hopefully supposed to be leaving on Sunday for the Cleveland Clinic. Yup… Dad and I are off again! So dad better rest up for another adventure. I love going with my dad. I love being with him. Not only is he my dad, but he is my best friend. He takes such great care of me when we are together and it really hurts him that no matter what he does, he can’t get me well. It hurts him even more that he can’t even afford the treatment that I desperately need to save my life.

I was supposed to be going to the clinic this week to see one surgeon, but the transplant team contacted me and said that I “belong” with them and I am too sick to see just an ordinary surgeon. They said that they felt that just having that one surgery to have the colon removed would not be sufficient enough and I would need a whole transplant of my small and large intestine, stomach, pancreas and liver. It is a major operation and extremely risky. Not many hospitals do this operation. In fact, only like 6 hospitals do this multivisceral transplant and it is deemed as the most dangerous transplant to have. Any transplant that involves the intestines is dangerous because of all the vessels that are involved. It is basically all circulatory and it makes it incredibly dangerous. Plus you are dealing with all that bacteria down there and everything so an infection can easily set in.

So since the transplant team called and said that I was so sick and belonged with them, I had to postpone my trip one week to see them. I am supposed to be seeing the top surgeon in the nation. He did the most transplants than any other surgeon. He is from the Intestinal Rehabilitation and Transplant Center at the University of Pittsburgh (UPMC) since its establishment in 1999 and has earned an international reputation for clinical and technical contributions to the field of transplantation. He has authored more than 300 original publications and 40 book chapters. He is an active member of 13 prominent professional and scientific societies.

I just hope that I am making the right decision. I know I have to do something to “buy” time because ideally I really should be going to Mexico, but unfortunately we can’t afford it. I really need to go to Mexico and have that Ketamine Coma. However, going to Mexico would cost me $100,000 at the very least and we can’t afford it. So, I am literally wasting and deteriorating because I need that very special treatment. We are trying to buy time while we find a way to get that money. Yet, since my body is shutting down and failing me, we are trying to save as much as we can and do as much as we can in the meantime. So in a way you can say we are just putting “Band-Aids” on the problem until I hopefully can get to Mexico.

However, having this transplant is really scary because it is even more risky than usual because I am so very sick. Yet, we really don’t have a choice because if I don’t have the transplant, I will die because my body is shutting down and we can’t get to Mexico right now. I am so afraid of dying with tubes coming out from everywhere because the doctors have already said how there will be so many tubes because the transplant is so intense. This transplant is no easy business. However, I am fortunate that I have the best surgeon on my case because Dr. Kareem’s reported overall patient survival rates of 61 percent at five years, 42 percent at 10 years and 35 percent at 15 years.1 Notably, the best survival rates, 70 percent at five years, were achieved more recently because surgical techniques and immunosuppression have improved.

I really feel comfortable though going to the Cleveland Clinic because they are making this trip as “easy” as it can be for me. They are trying to help me out in any way possible. Instead of telling me things and leaving it for me to do like get a hotel, make appointments, etc., they are doing everything.

I also feel comfortable because I am having a whole “team” on my side. I am seeing a whole set of top rated doctors. Dr. Kareem, which is the transplant surgeon, is the world’s most experienced surgeon in intestinal transplantation. He has dealt with almost every possible complication, and he knows how to work the immune system — that’s the hardest par t of intestinal transplants, which pose a greater immunologic challenge than do other transplant types. I will also be meeting with the doctor who basically invented TPN. I have had the worst times with TPN but maybe the guy who has the most experience with it will be able to help me with it. Finally, I need help with my autonomic dysfunction and neurological disease too. It just so happens that this center is familiar with it as well. Very few hospitals are familiar with my neurological and autonomic dysfunction so that is definitely a plus. In fact, the doctor most familiar with it happens to be “retired” and therefore, they are even trying to pull him out of retirement to see me. What a center! Maybe by going to this center I will be able to have everything accomplished and I won’t have to go to Mexico after all. Maybe between my entire team, they can cure me entirely. I can hope, right?

I just hope we will have the funds to do this. We are really suffering in the financial area and as a result, it can really make a difference as to whether all this will be possible. We are still not 100% sure if we will be able to even go next week because of the funds available. It is going to be close. It is getting harder and harder to scrap around for the money to pay for my treatment, medications, appointments, medical expenses, traveling expenses, etc. We desperately need help. Any help that anyone can give is much appreciated. NO donation is ever too small. If you have any ideas to fundraise or how to raise the money, I would really appreciate it. After all, we will even have to probably relocate if and when I have the transplant for a bit and that will take additional money as well, which is definitely something we can’t afford. My health is really deteriorating and I need help more than ever. Please continue to spread the word of my website, which is http://www.gofundme.com/FallonMirsky because we desperately need help. The bills are just snowballing out of proportion.

e523bcf9-407c-4f29-bcd6-34e54f71a9a4_profileI am fortunate enough for one lady to really take it upon herself to try to help me out in any way that she can. She is determined to help me get the funds that I need to live. In fact, she has set up a website on Facebook in case you want to take a look at it. I really invite you all to look at it and hope that you will because she really is truly a fantastic woman to have done this for me. I have never met her before in my life and yet, she is willing to do all that she can to help me raise the funds that I need to save my life. She has tried contacting media, posting stuff on Facebook, etc. The website is “Feet For Fallon 2014” on Facebook.

On August 3rd, I will not only be hopefully leaving for Cleveland, but this lady will be doing a walk across the entire length of Fire Island in hopes that she can raise funds and awareness for me. I was hoping to be able to meet her at her finish line, which was going to be at the lighthouse, but unfortunately I will be in Cleveland at the time.

Well… I guess that is about all that is happening. I have been trying to do some reading lately with all that has been happening. I am trying to read “If I Stay” by Gail Forman. It is a book that was turned into a movie, which is supposed to be coming out in the latter part of August. I saw the commercial for the movie and since it looked good, I decided to read the book. Speaking about movies, I saw the trailer for the movie called “Into the Storm.” I really can’t wait to see that movie. However, I will have to wait a bit longer than the normal person because I will have to wait until the movie comes out on DVD because I can’t go to the movies.

I can’t believe it is August already basically. That means Fall and the cold weather is basically around the corner. I hate the cold and I am hoping that this month doesn’t go as quick. It seems like it finally just warmed up and we finally got rid of Winter. This was the longest winter ever.

IMG_0213Speaking of August, my turtle’s birthday is on Friday. I can’t believe that George is going to be 19. I had him for 19 years, but when I took him to the vet, he is actually like 28. Turtles can live for like 50-100 years… so I will hopefully have him for a long time. I love this turtle. He is really something else. There is no other turtle like him. He is more like a dog than anything else. He actually runs around my house and he is no slow moving turtle either. Instead of him being afraid of the dog and cat, he actually chases them and they are afraid of him. My cat Missy loves to baby-sit him.

George is my little escapee. I actually got him because he was smuggled in from China. I was wanting a turtle for the longest time, but unfortunately there was a band on turtles and they weren’t bringing them in. However, I did receive a call one day from the aquarium telling me that they got one smuggled in. I went down to them and it was love at first site because there was something about George that got to me.

IMG_6607 copyGeorge is by far definitely not like any other turtle. He runs faster than any of the others, he is such a messy eater, and he has such a wonderful personality. In fact, when we take George to the vet, he has his own carrying case and everything.  He also loves to play with the ducks and everything when we go. My dad laughs because he spends the entire night in the corner by my bed watching me and watching TV because I am up all night long watching. My dad says that he is learning “English!” He also loves to be sung to. He is so funny because if he sees someone coming into my room, he definitely wants to come out. He will literally knock on the glass and ransack his cage until he gets what he wants. You can tell he is pissed because he literally spits. He gets himself so worked up that he actually blows bubbles out of his nose. He is such a funny little guy. Even when he eats, he is so spoiled. He has to have premium cut dog food that is sliced. He also has to have it in a “hill” so he doesn’t have to bend down. He is such a character. The best part though is that even though reptiles could have diseases and carriers of diseases, I know George is completely clean of diseases because he has been thoroughly checked out by the vet and has had so many tests.

Well… I guess that is about it. Please continue to pray for me and please continue to spread word of http://www.gofundme.com/FallonMirsky. I desperately need help in order to be able to receive the necessary treatment and to continue to be able to receive my medications and everything that are needed to save my life. If you have any suggestions on fundraising or anything else, please don’t hesitate to contact me at Femirsky@gmail.com. Thank you so much for all your support and encouragement.

Love,
Fallon

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July 18, 2014

10514200_10101209425882820_6913580955505816428_oHi-

I just wanted to write because I got HUGE news to share. I am actually writing today because for once, I actually feel like I have some “hope” and a light at the end of the tunnel. I really feel like things might be turning around and providing all goes well, I really feel that this could be the start of my miracle.

It really seems weird though that all this is happening now. I have not only got HUGE news to share, but my actual feelings have changed too inside. I wonder if it has something to do with the day. Today is July 18th,which isn’t just any ordinary day. It is the day that my grandpa passed away 20 years ago. Even though it has been so many years since his passing, there still isn’t a day that goes by that I don’t think of him and wish that he was still here.

Gosh… I can’t believe that it has been 20 years. I only wish that I could roll back the hands of time because I would do anything to be with my grandpa again! But unfortunately that can’t happen and time marches on. But I know that even though he hasn’t been here physically on earth, he has been watching over me and guiding me and protecting me. I know that he only wants the best for me and I know that he would do anything to make sure that I get better. Perhaps that is why all this is coming together now… so to show me that he is still there for me and that he is looking out for me! He and I had such a special bond that no one could break. RIP Grandpa!!

The biggest news that I just found out that I wanted to share is that we just received a call from the Cleveland Clinic, which was very unexpected. We already had made plans to go see a colorectal surgeon next week at the Cleveland Clinic because I needed to have my colon removed. Everything was scheduled with the doctor and therefore when the phone rang tonight, we had no idea why the hospital was calling especially when it was like 9:30 at night. Who knew that this phone call was going to be the call that was probably going to change my life? This news couldn’t come at a better time because I have been doing really horrible lately… even worse than before. I am really suffering immensely and breathing is getting harder than ever. I am having a really hard time clearing the secretions from my lungs, as I am aspirating worse than ever. I constantly feel like I am drowning in my fluids.

I was really baffled that the hospital was calling me when the appointment was scheduled for the following week and it was also 9:30 at night. I wasn’t expecting to hear from the hospital, so it really was a wonder why they were calling. When I picked up the phone though, it wasn’t the doctor’s office that I was going to see on the line. Instead, it was the transplant team!

It turns out that my case really got the attention of the entire hospital including the transplant team. I am so sick according to them that I was referred to the transplant team, which is supposed to have the best of the best surgeons in the hospital and the ultimate care. The doctors had felt that having just my colon taken out was not going to be sufficient in the long run due to how “ill” I was and my condition, and therefore, they thought that a transplant would be the best decision.

The transplant team had read through all my records, which is a volume in itself and they said that I really “belong” with them. I told them that I was hesitant to come to them and scared that I was going to be “turned away” because of how complicated I was. The transplant team assured me though that I shouldn’t be feeling that way. They said that the biggest hurdle I need to get over is the past because I need to let go of how past doctors treated me. They said that they were the “best of the best” and they know how sickly that I am. They said that they are used to getting the biggest and toughest cases and they are not afraid of “cases that are complicated” or cases that you have to “work” for. They said that I was in the RIGHT place.

The transplant team at Cleveland Clinic is a department for the sickest people. When I was talking to them, I actually felt for a change that they cared about me. I finally felt like there was a “team” helping me out because they were trying to help me out in every which way possible… trying to make things as easy as possible for me. For once, I felt like there was someone that understood me as well as everything I was going through. They knew how difficult everything was that I was going through and therefore, they did everything that they could to help me out. They said they were doing everything from helping me set up a hotel to scheduling all my appointments and more. I didn’t have to rack my brain anymore fitting everything in like a jigsaw puzzle or doing everything anymore. What a relief!

The intestinal transplant team knows how risky a transplant is and therefore, they really took extra special care of me. I never felt so comfortable with a set of doctors. After all, an intestinal transplant is the hardest transplant and the most dangerous that you can have. The doctors said that I would need my intestines removed, along with my stomach at the very least. They are also looking to remove my esophagus, pancreas, and spleen. It is one complicated surgery and you really need to have the best surgeons in the business to do this operation because it is so dangerous. After all, I am not in the best state to be operated on either. I am a huge medical risk with all the complications that I have such as with my autonomic dysfunction and other health abnormalities.

Only a few transplant centers in the world offer intestinal transplantation (also referred to as small bowel transplantation) as a treatment option for intestinal failure and complications related to parenteral nutrition (PN). I am really happy going to Cleveland because I am really going to get the best care. In 2011, the Center for Gut Rehabilitation and Transplantation completed three intestinal transplants for a total of 20 transplants since the program’s inception in June 2008. The program received CMS certification for Adult Intestinal/Multi-visceral transplantation, effective Dec. 15, 2010.

Currently, Cleveland Clinic is the only hospital in Ohio to perform adult intestinal transplants and is among only a few in the United States to do so. Cleveland Clinic consistently ranks as one of the top two hospitals in gastroenterology in U.S.News & World Report’s “America’s Best Hospitals” survey. In the 2011 survey, it was the top-ranked hospital in the gastroenterology category that offers intestinal transplant. Additionally, the American Society for Parenteral and Enteral Nutrition recognizes Cleveland Clinic as a program of excellence in nutrition support. The Center is comprised of surgeons, physicians, coordinators, nurses, dietitians, nutritionists, social workers and a vast network of people and resources to make the intestinal rehabilitation and transplant process as smooth as possible. So I really feel like I have a whole “team” on my side!!

The person that called me tonight spent an entire hour on the phone with me explaining everything in detail. She let me ask any question I wanted and really made me feel extremely comfortable. I am so glad that I am going to this new facility. I just hope that I will be able to raise enough funds to go because of course it will mean that I will have to travel frequently to Ohio, which is a plane ride away. It will mean staying at a hotel and everything else. It will also require medical expenses that the insurance won’t cover. In fact, when it comes time for the transplant, I will have to relocate temporarily to Cleveland and therefore I will need funds to do that as well. So… I only hope that I will be able to afford this whole treatment because I really feel that this could be my “miracle.” I just hope it isn’t taken away from me.

The transplant team wants to see me as soon as possible, but unfortunately the doctor will not be available until August 4th, as he is out of the office. However, this doctor is the best of the best. My surgeon that I am seeing is not just any ordinary surgeon, but the program director and surgical director. He has earned an international reputation for clinical and technical contributions to the field of transplantation. He has authored more than 300 original publications and 40 book chapters. He is an active member of 13 prominent professional and scientific societies.

In addition, I will also be meeting with Dr. Steiger, who happens to be the “father” of TPN. I only weigh in the 60s and therefore, I am very malnourished. It makes any surgery extremely dangerous and even living at that weight is dangerous. In 1975, Dr. Ezra Steiger, a General Surgeon and member of the original Philadelphia research group, was recruited to Cleveland Clinic to organize a formal Nutrition Support Team with multidisciplinary expertise in nutrition, vascular access, and nutrient pharmacology. So even though I have failed TPN in the past, I am hoping that he will be able to help me!

In addition, I will be meeting with another doctor that deals with my autonomic dysfunction and neurological disease. Even though he is “retired”, they are going to bring him back to see me because of how complicated that I am.

So… perhaps there might be a light at the end of the tunnel opening up! I just hope everything works out. I just can’t get over how they called me out of the “clear blue sky!” They claimed that they aren’t like any of my other doctors and I need to let go of all the things that happened in the past because they are not like them. I guess time will only tell.

As stated though, I desperately need funds to be raised for my medical expenses. My medical costs are extremely expensive and therefore, my family cannot afford the treatments, the traveling, the medications, the appointments, etc. without the help of others through donations. My health is literally on the line and I am really desperate for as many donations as possible because I don’t want to die and without the donations, there is no way that I will be able to receive the lifesaving treatments that I need or anything else to make me better and keep me alive.

e523bcf9-407c-4f29-bcd6-34e54f71a9a4_profileI am fortunately though and extremely lucky that a woman that I have never met has decided to do a “walk” for me. The “walk” can be found on Facebook under the link “Feet For Fallon”. She is going to be walking the length of Fire Island to bring awareness to my condition in hopes to raise the funds that I need to hopefully reach that light at the end of the tunnel and to finally be able to live my life. It is an extremely touching thing that this woman is doing for me and I can’t thank her enough for it. Please check out her Facebook site and please spread the word.

In addition, the lovely and caring woman also set up a Youcaring.com page in my honor to help raise funds for the “walk” as well. The website can be found at http://www.youcaring.com/medical-fundraiser/feet-for-fallon-2014/205751. Please spread the word to as many people as possible and please check back frequently on the page, as updates will be frequently made. After all, donations are desperately needed and no donation is ever too small. ALL donations are MUCH appreciated.

Time is really precious for me. I am not doing well at all and there’s no such thing as “time” or 5 minutes anymore. For me… every minute counts. I am really running out of time fast and that is why I am trying to raise as much funds as possible so that I can get the much-needed treatment before it is too late. I also want to do all that I can and experience as much that I can because I don’t have the pleasure to “wait” and do it later. It is important to me to experience all that I can before it is too late.

10515297_10101203522642960_1429400719228554949_oWell… I better be going. I gotta go rest because I have my usual Friday surgery in a few hours. Got my special x-ray socks ready to go. In fact, when the kind lady called to confirm my appointment, she saved me for last because this way she can have a real “conversation” with me instead of just asking the usual questions that she has to ask every patient and then hanging up with them. She talks to me every week and therefore, we really have gotten to know each other. I guess what other person can say that they have to go for surgery every week like this, right? Hopefully though this will not have to be for much longer because I will be on the road to good health. After all, the person I spoke to on the phone tonight at the Cleveland Clinic said that the goal is to get me healthy and back to a “normal” life. I just hope it works.

Thanks again for all your continued support. I really appreciate all the prayers and encouragement. Please spread the links below. http://www.gofundme.com/FallonMirsky and http://www.youcaring.com/medical-fundraiser/feet-for-fallon-2014/205751

Love,
Fallon

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July 12, 2014 ffff

10515297_10101203522642960_1429400719228554949_oHi-

Just wanted to update you on all that has been happening because since the last time I wrote… a lot has happened. It seems that things have definitely made a complete turnaround and there have definitely been a huge change of plans…especially with the surgery for the removal of my colon. So I wanted to share them with you since so much has happened.

I guess before I tell you about the change of plans, I will tell you what happened today. As always, I went for my usual Friday surgery, which entails going to get suctioned and vacuumed out! I need to have my colon cleaned out because my GI system is essentially paralyzed and dead and as a result, nothing passes through. Therefore, I have so much mucous and stuff inside and I am not only very distended and uncomfortable because I cannot pass this, but it can also cause me further problems because all this stuff is literally “rotting” and “fermenting.” Even though I basically vomit everything I take in, whatever I don’t vomit and even my pills that don’t come back up just end up sitting in my GI system rotting and fermenting until they are removed. The doctors are worried that my colon is going to perforate or rupture, and they are very worried that I will go into sepsis because of “rotting” and fermenting of all that is happening inside. So it is really imperative to have my GI tract cleaned out as much as possible… not to just make me more comfortable, but to also make sure that things are removed. In addition, my colon and intestines are so dilated that they are putting extreme pressure on all my other internal organs including my heart and as a result, it is also shutting them down. So by having my GI system “cleaned out,” it is relieving some of the pressure. I like to call it that I am going for my weekly “housekeeping!”

I really need this treatment because without it I will not be able to pass anything through and I can die. I literally become all distended and look pregnant because of the extreme gastroparesis. In fact, I even had to wait over a week from the last time I had this procedure due to the 4th of July and boy did I feel it. It really made a difference that I had to wait an extra 2 days to have this done. I was so uncomfortable because I felt so blocked up that I was literally counting down the minutes until I had this procedure today.

This has become my way of life! I desperately need to have this treatment because without it I will suffer way beyond belief and it can also kill me by not having it because my intestines will perforate and all that stuff that is just sitting and rotting will kill me. Without this treatment, I will surely eventually go into sepsis and die. However, the doctors are afraid that even though the insurance is covering this treatment to a point now, they are afraid that they are going to stop paying. We all know that the insurance company isn’t going to continually pay every week for me to go for this surgical procedure because it is so expensive. It entails me going under anesthesia, going to the hospital, having a team of doctors, etc…. so it is quite expensive. We don’t know what we are going to do when the insurance officially stops paying. That is why I need to get HELP as soon as possible. I really need to get as many donations as possible so that I can afford the necessary lifesaving treatment that I require such as to have my colon removed so that I won’t have to undergo this procedure anymore. I also need the funds because if the insurance does cut me off, I will need some way of paying for the treatments until I get my colon removed. But of course if I would just have the surgery already to remove my colon, it would really be the answer because not only would it help me, but also I won’t have to worry about the cost of these surgeries that I have every Friday. In the meantime though, I just continue to pray that the insurance company continues to pay as much as they are doing because I desperately need this surgery every week. I am in so much pain and agony as it is… and this surgery really does help. It is also saving my life in the meantime while I wait to have the bigger surgery performed.

What a day though I had when I went for surgery though. By having surgery every Friday, the entire staff knows me there from the receptionists to the nurses to the doctors. I really feel comfortable there because they know how to treat me, as I can’t be treated like a typical patient since I am so hypersensitive and the slightest touch brings about the most painful feeling you can imagine as well as stir up the autonomic dysfunction. I am also a very big surgical risk and they have to be careful with me because I am medically unstable. For example, my blood pressure is extremely low (it is like 70/40), my heart rate is very low (43 beats per minute), etc. So they really have to be careful with me. I also can’t get IVs in the same way a normal patient can get it. I need to have it done right before I get sedated and I cannot have any liquid run through the IV until I am under anesthesia because I can literally feel the most minuscule amount of liquid in my veins and it will feel like shards of glass going through my entire body. The littlest stick of a needle is like someone sticking a knife through me. In addition, I get special accommodations that normal patients don’t usually get, as they allow my dad to come into the OR with me and stay with me until I am officially “knocked out!”

What a time I had though today with this surgery. This time when I was given the propofol to go to sleep it caused me sooooo much pain. It is known to do that and they usually give me lidocaine prior so that the pain isn’t that bad. I call that milky what substance the ‘lethal” stuff because it’s like glass running through your veins and tearing it to shreds.

Anyway, when I was given the propofol this time, it really hurt so badly that I was screaming my head off. I was screaming so much that another doc came into the OR and my doc was like “it’s not me… I didn’t even touch her yet!!” They literally had to close the door because I was making such a ruckus. I was in so much pain that I was screaming so much. I was telling them to cut my damn arm off because it hurt so badly. The doctor was like telling my dad “don’t worry… She’ll be out in a minute!” Well… That minute felt forever. That was the longest minute of my life.

Thank goodness though I had the surgery though today because I couldn’t make it much longer. I was definitely overdue because I wasn’t able to have it last week on my usual Friday due to the holiday and as a result I had to have it 3 days before (Tuesday). I was so bad that now I am suffering with all this air in my intestines and it won’t come out because like I said before, nothing moves through the intestines. I have to literally try to manipulate the air bubble out of me by pushing and such on my abdomen. The doctor tries to take out all the air that he puts in me to blow up my colon, but nothing is 100%. He must have had to blow the colon up a lot because when we saw him after the surgery, he said that it was really ‘bad’ inside and he said that he could definitely see a difference that I was ‘overdue.’ So it wasn’t just that I felt it… there actually was a physical difference.

I gave all the nurses and doctors a great surprise today as I wore my “x-ray” socks. Due to the hypersensitivity, I can’t wear the socks that the hospital usually gives you to wear. In fact, I can only even wear a sock on the right foot because the disease and hypersensitivity is so much worse in the left foot . The only thing that is tolerable to wear on the left foot is a stretched out stockinette. Since I get to wear my own sock, I thought it would be cute to get x-ray socks especially since I am going into the hospital and OR. Well… when the doctors and nurses saw the sock, they loved it!! Too bad I can’t use the other sock. My dad said that I should save the other sock to wear when this sock gets old. But I told my dad that it is literally impossible to wear this sock on the right foot because the bones will be backwards.

Well…here comes the BIG news that I really wanted to share. There has been a BIG change of plans. It turns out that I am now going to be headed to the Cleveland Clinic in Ohio. The surgeon that was supposed to be doing the surgery to remove my colon is backing out of the operation unfortunately. Therefore, it gives us no choice but to go to another surgeon, which will be at the Cleveland Clinic.

After the surgeon was thinking about the case and going through my records in detail, he decided not to do the surgery. Doctors don’t realize how complicated I am or what they are getting themselves into until they physically see me. That is why doctors always say that they will do a surgery or something until they see me. Then there is always a change of heart.

The surgeon that we saw feels that I am too medically complicated for him. He feels that there are better surgeons that are equipped to handle me and as a result, he rather them operate on me. He also feels that he wouldn’t be able to do this operation without putting a bag in me. Even though I would only have the bag for about 6-8 weeks, he thinks that it would really cause me a lot of problems. He said that “This is a rather extreme case and I am afraid that there would be likely problems or issues with the anastomosis.” So he would rather me go to a surgeon who can handle me and do it without living me a permanent or temporary ileostomy.

Even though I was really upset that the doctor backed out, I understood where the doctor was coming from and to tell you the truth… I rather go to a doctor who will definitely be able to do the surgery without having to have the bag at all. After all… even though the bag is only planned to be “temporary,” anything is possible and I don’t want to have it permanent. Even having it for 1 day though would be too much because I really don’t want the bag. So I am glad that I will be going to a doctor that will hopefully be able to do it without having the chance of this occurring.

The surgeon didn’t leave me in the lurch completely though. He did give me some direction, as he told me some names to see. He really wanted me to see a top surgeon in the Cleveland Clinic and therefore, I called over there and we are heading over to the Clinic at the end of the month. So we will see what this surgeon has to say. Hopefully this surgeon will be willing to do it.

I had 2 ways of possibly going. I could either go with having my colon completely removed or I can also have a transplant. However, after speaking to the surgeon, the surgeon said that even though having a colon is ideally better because it does provide a function to your life, it really would be better in my situation to have it just removed instead of having the transplant. He said that the anti-rejection drugs that I would have to take for the rest of my life would have too many downsides and therefore, it would not be a good idea to go that route. After all, the anti-rejection drugs could cause so many problems and even cause me to die because they are so powerful. So it is just better not to open another can of worms and just have the colon removed.

We now have to decide though what to do about California, as it plays a role as to when we will be heading to the Cleveland Clinic. We are supposed to be going back to California for the last test before I was supposed to have the surgery. I was supposed to have an exploratory surgery that entails having a colonic manometry and colonic transit study. During this time there will also be a catheter placement in the cecum.

We are scheduled to go to Cleveland Clinic either July 29th or the following week, August 5th. However, it is all dependent on California because California is scheduled for the 29th and therefore if we end up going there, of course that means that we will have to go to Cleveland on the later date. However, we don’t know what to do and when we asked the doctor’s office in Cleveland what to do, the response was that they can’t give us an answer without first meeting with us. They did say though that “The more information the better we are!” However, I do have a lot of information as my records are so thick with office notes, tests, procedure notes, etc. It is like a textbook in itself. So I don’t know what to do because it is a huge trip to undergo if unneeded. We don’t know if the surgeons are going to need it before proceeding with the operation and we don’t know if possibly it can even be done at Cleveland Clinic, which will also eliminate the need to go to Cali. Not only is it a huge trip and hard on my body because it is across the country, but it is hard financially too. We can barely afford anything as it is. We don’t even know how we are going to afford one of these trips…let alone both. I would hate to not have the test and then be told that it is necessary and have to go back for it. It would only waste time… time we don’t have.

10536823_10101203776848530_6907075928595070965_oSo that appears to be the big news.  Just wanted to let you know the big change of plans.  I am not feeling well so I am going to try to rest.   But before  I go, I wanna share something funny!  A good friend of mine always comes over my house and always wants ice. Since we never have any ice in the house, guess what he did?  He went out and bought us ice trays so that there can be no excuse not to have ice.  I think of course he did it more for himself than for us so that he would have ice when he came over, but we are very thankful and appreciative that he did this.  I had a feeling that he bought us this when he asked me what my favorite color was and told me that he bought me a “gift!”  What a great friend!

Like always I want to thank you all for all your support and encouragement. Please continue to pray and spread the word that donations are much needed and greatly appreciated. No donation is ever too little!

Thanks again,
Fallon

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July 10, 2014

10338554_10101179220085480_343435920416261529_oHey-

I know I just wrote yesterday, but I went to the doctor today and I just wanted to share some very important information that happened today. I knew that I needed treatment desperately and it was urgent, but when I went to the doctor today, he really made sure that we knew how important it was that I got the treatment that I needed like NOW! He made it known how I was I going to die without the treatment and how I am so sick that I am basically at the point where I can die at any moment. He said that he “never saw anyone as sick as I was!” I have been told this for a while, but for some reason, today was different. Never before did I have a doctor make it known of his thoughts and he wanted to make sure that both my dad and I thoroughly understood exactly what was going on and how we both knew how serious this situation was. It was as if this doctor thought that we were not taking this matter seriously.

We know how serious this matter is and my dad and I are quite aware of the fact that I am going to die without treatment. We know how sick I am and we know that treatment is very important and desperately need. But unfortunately, nothing is “free” in this world and therefore, we have been not able to receive the treatment that I desperately need to save my life. We have tried so many different ways, but every method that we have tried to raise money, it just hasn’t been as successful as we would have liked.

I want to get better more than anything in the world. I have so much to give to the world and I really want my life back. I have so many plans for when I get better such as to go back to being a doctor so that I can help others. Doctors don’t realize what it is like to know that there is a light at the end of the tunnel but it is unable to be reached. Everytime I try to get out of this dark and never-ending tunnel, I always end up hitting brick walls. I hate how if I ever come across something that can potentially help me, I can never get it because it costs too much money or there is another reason that is standing in the way. It is like holding a dog bone in front of a dog and watching the dog salivate. You keep teasing the dog with it and telling the dog that she can have it, but then you won’t give it to her. You know?

Doctors have been telling my dad and me that I am “dying” and not going to make it much longer for a while. It has been said that I am a “time bomb and now I am officially detonating.” However, no matter how many times we have been told this… there really isn’t anything that has been done or can be done because what needs to be done of course costs money, which is something that we are lacking. I desperately need treatment and I am really weakening and deteriorating. However, when I went to the doctor today… it all hit home.

The doctor told us that he is going to be quite frank with us. He said that he never saw anyone as “sick” as I am and that I desperately need help like NOW or I am going to die. He said that I don’t have a lot of time left and he also wanted to know if any of my other doctors ever told my dad and me that I am doing so badly and going to die. He thought maybe we were just not aware of this stupid little fact, but how could we not be? Of course we are aware of it. So we told him that we have been told numerous times that I am very sick and that I am going to die and such, but of course this doc went much further in his thinking. He actually told my dad and me exactly what was on his mind.

The doctor told us that I really need to get treatment NOW or I am going to die. When we tried to tell him about how we have been trying to do that and we have been trying to get the treatment to save my life, but there isn’t any money, the doctor said, “there has to be another way because you don’t have the time to wait around anymore.” He told us how basically the medical field has failed me and how I desperately need to find a way to save my life because I am no easy case. Of course it is easier for him to say because he doesn’t have to foot the bill over at the end of the day. You know? But he said that I am so sick and not only do I need help, but I need rapid detox off some of my meds because it is also further contributing to the decline of my health and shutting down my organs. He said that I desperately need this rapid detox to get off some of these meds because I can’t get off of them any other way. The only problem though is that of course it is illegal in New York and of course it isn’t covered by insurance.

It turns out that some of the meds that I am on are really causing me a lot of problems and further causing my organs to shut down. We have known this for a while, but we can’t really come off the drugs because I am so dependent on them and I also suffer from severe autonomic dysfunction. If I were to come off any of the drugs, it would really kill me… and I am not joking about that. There is no way that my body would be able to handle that. My body would go into severe withdrawal and it wouldn’t be able to handle it with the autonomic dysfunction. I would have severe seizures, other problems, go into comas, and even die. We have even tried to lower the meds in the past, so I know for a fact that this isn’t just words. I know that my body will literally go into chaos if this were to happen. We even tried to lower just one of my meds 30 mg and it caused such severe problems that I almost died from at one time. I also have to be extremely careful when taking my meds because if I miss a dose, I can easily feel it and it also causes my body to go into extreme autonomic dysfunction, which can also cause me to go into seizures, comas, and death. It is something that is really uncomfortable, scary, and something that I can’t afford to happen. Sometimes I think that this autonomic dysfunction is the worst part of my entire illness.

The doctor said to us that he never saw someone that was on so many meds. Well… what did he expect? I am sick. I take more medication that can kill a horse. That is why doctors are surprised that my body can handle all the pills that I take because I take over 50 pills daily. A grown man that weighs 200 pills probably wouldn’t be able to handle the amount of medication that I take. I take so much medication because my illness is so severe. They say that I am one of the worst cases to exist and that is why treatment is so imperative and that is why I am going to be hopefully the 38th patient to undergo that Ketamine coma in Mexico, which is reserved for the very worst cases. However, I also take a lot of medications because I have severe gastroparesis and therefore, not all the meds are even absorbed. There are plenty of times that I take my meds in the morning and then I throw up over 12 hours later and I can literally bring my pills to my father in a cup not dissolved because of the extreme gastroparesis. So essentially they aren’t working if they aren’t dissolved. So even though I am taking all those pills, who actually knows what is working and what is not. You know? Plus, the doctors think that I have a liver that metabolizes the mediation extremely fast and therefore I am able to tolerate the high doses.

But in either case… I am on a lot of medication and it isn’t good. I take a lot of potent medication such as ketamine, dilaudid, methadone, morphine, etc. So they really want me to get off of it or at least come off a lot of it because they are also not good for my body and are also contributing to shutting my body and organs down. So not only is my illness killing me, but so are these meds. I also need treatment of course for my illness like the ketamine coma and the removal of the colon and the transplant, which will all work better when I am off the medications. They also don’t want to ruin all the stuff that these treatments are going to correct by taking these meds. So they are really hoping that I would be able to come off some of these meds so that it won’t occur in that way. You know?

But like I said before, it isn’t an easy answer. I can’t just come off of them or “wean” myself off. It just isn’t possible. So the only way possible is to have rapid detox, which is not only expensive, but it is also illegal in New York. It is legal in so many other states, but of course it is not legal in New York. You would think that it would be legal in New York especially with New York having such top name hospitals and such. But of course that isn’t the case. So not only do we have to find a place to do it, but also we have to find a way of affording it. Luckily, it can be done at the time I go for the coma in Mexico or it can also be done in California. So thankfully I do have places to go to. However, that doesn’t eliminate the cost of this treatment though.

This rapid detox is extremely expensive. Of course the insurance doesn’t pay for it. Insurance stinks. You can’t live with it and you can’t live without it. So… I don’t know how on earth I am going to even be able to afford this treatment because I can’t even raise enough money to pay for the other treatments, medications, medical expenses, etc. You know? But this is really urgent and extremely important that I do it. I really need this to happen or I am going to die. However, it isn’t cheap. It is like over $20,000.

I love how doctors tell you that you need certain stuff done and then they are no help in giving it to you. Not only can’t they give it to you because it is not ‘allowed’ in the state, but they have to deliver the bad news that it is so expensive and not covered by insurance. Why can’t all doctors be like Patch Adams? Remember that movie? Why can’t people do things out of the goodness of their heart? Why does money have to play such a crucial role? Sometimes I wonder what this world would really be like if money wasn’t to exist.

I have to admit though that I am really fascinated with this procedure. Even though it is extremely critical and risky because it entails putting me into a deep coma for a few days, intubating me, and taking me off all those drugs that my body is so dependent on… I am really fascinated with it. It is amazing how this procedure can literally make me technically all better. It can make it so that I don’t feel any of the withdrawal affects. It will make it so that I won’t have risk dying by coming off the medications because my body won’t go haywire.

But the mechanism that it does do to perform the “detox” is really something else. They said that during the detox that I will be given another drug called Naltrexone. This drug will bind to all the receptors that the other drugs that we don’t want in my body usually binds to and as a result, it won’t allow for any of those other drugs to no longer bind to them. Therefore, if I were to take any of those drugs again, there would be no receptors for them to bind with since the Naltrexone would be already bonded with them and therefore, it would essentially be like taking water. Those drugs would basically do absolutely nothing to me and pour right out of my body. However, the Naltrexone only works for about 1 month and therefore, it has to be injected monthly. I will have to be in the coma for some time until all the medication that we don’t want in my body and don’t want my body addicted to is out of my system. We have to wait for all the half-lives of those meds to be done. Unfortunately though, some of the meds do have a long half-life. For example, Methadone has a 24 hour half life and therefore I will have to be in the coma for a couple of days in order to have that drug completely out of my body and for this detox to work and be completely effective. That is also why this will cost so much money and such. You know?

So… we are hoping that perhaps this rapid detox can all be accomplished in California when we go down at the end of July for the exploratory surgery and presurgical testing that will be all in preparation for the huge surgery that will be taking place about 2 weeks later, which will entail removing the colon. We are also wondering if it can’t be done at that time, if it can be done when I have the colon removed on the next visit. But of course it is dependent if we have the funds and therefore, I am hoping that there will be a way to raise the money. If you can think of any way possible to raise the money, please let me know. Please also continue to spread word of my site for donations because I desperately need this rapid detox and I definitely won’t be able to afford it and have it done without the help of others. So please remember to tell others about http://www.gofundme.com/FallonMirsky.

In the meantime, we are awaiting to hear from the surgeon to make sure everything is finalized for the trip at the end of the month for the presurgical test and for the exploratory surgery, which is all needed in preparation for the removal of the colon that is taking place 2 weeks later. I am scheduled to have the exploratory surgery to map out the colon and to finalize things on July 28th, but the doctor is working on putting me as an inpatient the day before because it is impossible for me to prep for the procedure as an outpatient. Not only can’t I prep for it because I can’t drink the liquid, my bloods are not good and dehydration is a problem. Therefore, it is extremely risky to prep for this procedure as an outpatient and it is much safer to do it under supervision. The doctor also wants to give me ketamine before the procedure and after the procedure to make sure that the illness doesn’t spread. So there is a lot that needs to be done.

In addition, we were thinking that if I were to have to spend the night in the hospital, my dad and I were thinking about maybe flying into California that day and then going directly to the hospital to be admitted. We were also thinking about just keeping everything at the hospital with us like our suitcases and everything instead of checking into the hotel room because my dad would spend the night with me in the hospital and this way we possibly can save money because we wouldn’t spend money on a hotel room for those nights. Of course it would be much better to fly the day before so that we can check into the hospital bright and early in the morning and have the entire day for preparation for the procedure, but we are trying to avoid paying for extra hotel stays that we can avoid. Also… we figured that if my dad could spend the night at the hospital with me and he was going to have to do so anyway because I need help, then perhaps we can also save a night’s stay at the hotel. So we will have to see.

I have surgery on Friday to be cleaned out and boy… I am counting down until I am going. I am so uncomfortable and I can’t wait to get the blockage taken out. My colon is literally dead and therefore, I have been going every Friday for surgery. My GI doc literally goes into my colon and as he says, he removes the ‘schmutz’ from my colon. You can’t imagine how much more comfortable that I feel afterwards. Not only does he do it so that I am more comfortable, but he does it so that we can hopefully avoid my colon from perforating or rupturing since nothing moves through. The doctors are also afraid that I am going to go into ‘sepsis’ since nothing moves through and as a result things end up fermenting and rotting inside.

Well… that appears to be everything. Just wanted to share the newest info. Thank you again for all your support and encouragement. Again, if you can please think of a way of raising money, please contact me at Femirsky@gmail.com. Please continue to pray for me because I need all the prayers that I can get.

– Fallon

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July 9, 2014

10465526_10101191576128870_4145100881921346538_oHi!

Sorry I have been so out of touch but the truth of the matter is that I am kinda at a standstill in treatment and I am really not doing well. I am really trying hard to hold on and hoping that there is going to be a light at the end of the tunnel, but I am still continuing this dark tunnel with no end in sight. They say “everything happens for a reason,” but I am still trying to find out the reason why I was selected to suffer from this horrible disease. People say to have “Hope”! But I kind of laugh because I can’t really do that anymore. The word “HOPE” just doesn’t mean ‘a feeling of expectation and desire for a certain thing to happen.’ It also means to ‘hold on, pain ends.’ However, in my case I don’t know how much longer I can do that.

The pain and suffering is just unbearable. I really can’t take it anymore. I plead with my father to just ‘close your eyes and knock me out!’ Nothing and I mean nothing is helping. I am on high doses of meds… meds that would probably kill a horse. But for me… they aren’t even helping a bit. All I can do is cry and scream in pain because it is just excruciating. I take all my meds… over 50 pills a day… and I just can’t get a bit of relief. I feel like I am being pulled in all different directions and being run over by cement trucks 24 hours a day. I feel like gasoline is being poured on me and I am on fire and I am blistering all the time. I am so distended that I feel like I am over 9 months pregnant and that need someone to ‘pop’ me. When is this ever going to end?

The truth of the matter is that I am doing worse than ever and to be honest I feel like I am in this all alone. It is so ironic. The people in your life who say, ‘I’m always going to be here for you.’ Are the ones that walk away first. You really learn who your true friends are when you get sick. I have so much going on and yet… I feel like that the people I always thought would be there for me are gone. My family is suffering so much and we need so much help. I need the help of others in order to survive.

I was never a ‘beggar’ or someone that really asked a lot of people. However, I am at the point where I am desperate and I am really needing all the help that I can get. I know how tight money is in today’s world and how people are afraid to be without it. But, I wish they would only also see where I am coming from. I wish they would see from my shoes that I am 32 years old and without the help others, I am going to die. I just can’t just let it happen!

I am not even asking a lot. I have seen many times that when we have huge disasters like terrorism, hurricanes, etc. people come together to help each other out. However, I am not one big natural disaster, but I am still a very important person in the world who doesn’t want to die. Therefore, I really wish that people would come together to help me live. I need people to come together to help me raise enough money so that I can raise money to afford the necessary treatment that I need to save my life. I am rapidly deteriorating and time is definitely not on my side. There are so many people in this world and if we all just came together and everyone even just donated a single $1, I would easily be able to receive the necessary treatment that I need to save my life. After all, there are 316,128,839 people in the United States. That is plenty of people to help save my life!

I’ve always helped others when I was well, so why can’t I be helped now that I need it? Why can’t people return the favor that I have given countless times whether it was to the poor, the old, the sick, etc. When I was well, I would help anyone that was in need. If there was a collection going on, I would donate. If the veterans were outside collecting money and giving out poppies, I would donate. If it was holiday time, I would make sure that I would buy presents for the homeless and less fortunate so that they could have a better holiday. If there was a walk-a-thon or another fundraiser, I would donate. But how come I can’t I be helped now in the same way I have helped others?

I have tried so many times to raise money. I have made posters, made bracelets, blogged, pleaded on Facebook, wrote to the media, etc. However, I haven’t really been successful. Unfortunately it isn’t ‘what’ you know in this world, but ‘who’ you know and in this world… I am out of luck because I really don’t know anyone in that field. I always wanted to make a difference in the world. I wanted to be a doctor so that I could help others. So I am only hoping that I will be able to get better so that I can live a long and successful life as well as a life that will make a difference in the world.

If you can please help me in any way possible, I would really appreciate it. One of the reason that I haven’t written in awhile is because I am at a standstill in treatment in and I am rapidly deteriorating. I desperately need treatment because my body isn’t going to make it much longer. So if there is absolutely anything that you can do… even if it is just spreading the word of my “Gofundme.com” site, I would really appreciate it. If each person told another person of my website and donated even a $1, it would really make a HUGE difference. So please remember http://www.gofundme.com/FallonMirsky and please help me raise as much money as possible. If you have any other ideas to fundraise, you can also contact me at Femirsky@gmail.com.

I am really running out of time. The expenses that we have are out-of-this world. Of course the ultimate goal would be to get to Mexico so that I could undergo the ketamine coma that they have for at least $100,000. However, it is very expensive and of course it is going to take a lot of donations to get there. However, if I could get the Ketamine Coma in Mexico, it could really make a huge difference in my life, as it can potentially “cure” me.

If I were to get the coma in Mexico, I would be the 38th patient to undergo this coma. This coma is for the most extreme cases and is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

1622535_10101189566466250_4321880750199811808_oIn the meantime though, I desperately have to get to California and supposed to be going back on July 26th because I have to have my colon removed. My entire GI tract is basically “dead” and I need to have a multivisceral transplant, which entails receiving a new stomach, small and large intestine, pancreas and liver. However, I have really deteriorating and this transplant is extremely risky. In fact, only 6 hospitals in the country perform this transplant and it is considered the most dangerous of all transplants. Since I have deteriorated so much, they are trying to hold off on this now because I am not strong enough and therefore, they are now going to remove my colon and hope that will be enough to make a significant difference. I desperately need to have it done ASAP because colon is really putting my life in jeopardy.

My colon is in really bad shape. However, one of the things that are wrong with the colon is actually partially “saving” my life. My colon is extremely dilated and putting extreme pressure on all my other organs and therefore, it is essentially shutting them down. However, this dilation is essentially also saving my life because I also have a twist and an intussusception. In a normal person, having a twist or an intussusception would mean ‘death’ because you can’t live with that. However, due to my colon being so dilated, I have been able to live with it. Yet, this ‘safety net’ can go anytime and it is really important that we remove the colon and stop this problem before it is too late.

The colon is the organ that has the most bacteria in the body. Therefore, it is very quite possible that I can go into Sepsis very easily. Nothing is passing through my colon because it is essentially ‘dead’ and there is no peristalsis. In fact, there is so much mucous inside and nothing moves that things are literally ‘rotting’ inside. When the doctors went inside to explore, it took them over an 1 hour to get to the intestines and it also took the help of many nurses in the room in order to navigate to the colon because of how dilated and lax the colon is. The colon is so distended that the surgeons have even claimed my colon to study when it is removed because they say that seeing it from the inside of me and then seeing it when it comes out are 2 different things. They all say it is massive and can’t wait to see it when it is removed.

Therefore, the colon is supposed to be removed in an upcoming surgery at Cedars-Sinai Hospital in California. It is an extremely risky surgery because as I said before, the colon has the most bacteria in the body and I can’t afford to get any infection whatsoever. Even one little infection will literally kill me. Even though the plan afterwards is to connect the rectum to the stomach with a little piece of the small intestine still there, the doctors said that I will have to have a bag for about 6-8 weeks before that reconnection can take place. The doctors said that I need this bag because it is a “safety” mechanism so that everything can heal inside because of there should be a leak or anything… The doctors are planning to put a bag in me so that the connections can heal before the reconnect me just so they can be sure that they don’t leak. They want to make sure that the body and the parts that had surgery “calm down” before proceeding to reconnect me because like I said before I can’t afford any leak or infection whatsoever.

I am not going to lie, but I am extremely petrified about the bag. I really don’t want the bag, but it looks like I don’t have any other choice. I only pray and hope that I will definitely be able to have it removed after 6 weeks. But that is going to be the longest 6 weeks of my life. The doctors say that ideally and hopefully that the bag should be able to be removed, but it isn’t guaranteed. Of course nothing is guaranteed. That is what scares me because once the colon is removed, I can’t say “give it back to me.” They said that there should be no reason why the bag would have to stay as long as the rectum is functioning, but I am just scared that for some reason or another that the bag will have to stay. My dad won’t let me believe 100% that the bag will be removed because he doesn’t want me to build up my hopes to be disappointed. Therefore, he constantly reminds me that it “should” be able to be removed, but it isn’t guaranteed.

But since this operation is taking place in California, I will need to have plenty of donations. We have to worry about traveling expenses, living expenses while we are there because we will have to be there for awhile, medical expenses, etc. The trip is all set for July 26th because I have the presurgical testing and one more exploratory surgery before the huge surgery to remove the colon, which will take place about 2 weeks later. During the exploratory surgery, they are going to put a radioactive substance in my cecum to actually map out the colon so they know exactly what they are doing when they do the surgery. The surgery will then take place about 2 weeks later.

So I have that on the calendar providing that I get the funds. Yet in the meantime I have been going to have surgery every Friday to be “cleaned out.” I need to have this done because there is too much buildup in the colon and it is hopefully preventing it from rupturing and from perforating the colon. It is also making me more comfortable because it is empting the colon out. I can definitely feel a difference when I have this surgery because as it gets closer towards the end of the week, I get more and more uncomfortable. I always make the nurses laugh because I call this surgery my weekly “housekeeping” because it is cleaning me up!

Never before has my stomach and colon been so bad. I can’t eat basically anything and even the very few things that I was eating before are basically impossible to eat now.

In addition to the stomach and colon problems, I have also found out that I have esophagus problems as well. I have basically no peristalsis in my esophagus and therefore I can barely swallow anything that is not water. They did a test and they said that the esophagus showed no “swallowing” mechanism with anything thicker than water. Even with water I had problems. In fact, if I would eat a shrimp, it will basically sit in my esophagus and take up the entire esophagus because I lack the swallowing mechanism. The doctors in California want to take care of this as well because it is a HUGE problem, but they want to do one thing at a time and the colon is the priority. So this will be taken care of afterwards.

I have been really suffering lately and it is really taking a huge toll on my life. I can barely even move. I got back my bloods and unfortunately there is now more stuff wrong with them. Not only are my heart bloods really out of whack and I can easily have an arrhythmia and go into cardiac arrest, but my glucose is extremely low that I can have a seizure and go into a coma, my carbon dioxide is extremely elevated, my prolactin is extremely high because of the pituitary tumor that I have, my clotting factor is too high and I cannot clot. I can now also add to all those things that my red blood cell count is falling and is below normal. My body is just deteriorating. I really need help. Like the doctors have said, “I am a time bomb and now I am detonating.”

I have also just went to the ENT doctor the other day and it was discovered that I had so much wax buildup that it was actually blocking the ear drum. It was so bad that you basically couldn’t even see the canal and ear drum. It was so hard inside and built up so much that there was blood and fluid inside the ear as well. The doctor literally had to use hydrogen peroxide to loosen it up and then when the doctor removed it, it was extremely painful. I am extremely hypersensitive and therefore, even the slightest touch causes me extreme pain. However, the wax was so much and it was so cemented into the ear that the doctor had to do so much manipulation that it caused me such severe pain.

To make matters worse, my osteonecrosis is also worsening. I totally feel like a stegosaurus and a Jack Lantern all put into one. To think… I was one time “pretty.” I really don’t consider myself “pretty” anymore. I am like a stegosaurus because we both have spikes going down our backs (I am so thin that I have my spine protruding like spikes), we both discolor, we are both ugly, etc. The only difference between the stegosaurus and me is that the stegosaurus is extinct and I am going extinct. I am like a Jack O’lantern because I am losing al my teeth. This really bothers me because I used to have such a nice smile. It is like this disease is totally wiping everything from me. I hate to even smile anymore because of how my smile looks. I hate taking pictures and if I do take them, I have to airbrush them before I let anyone see them. To think… I used to love taking pictures too. This disease has taken everything that I loved from me. I just want my life back and hopefully one day I will get it all back!

Due to how bad my colon has gotten and my overall GI tract, I have also been bleeding a lot. There are plenty of times I wake up from a brief cat nap to find blood or mucous in my bed. I can’t tell you how many times we have had to change my bedding already. It is starting to be a daily ritual. It even cost me a comforter because my comforter got ruined from washing it so many times. It was my favorite comforter too and I had to for like 10 years. It is a shame too because first of all it isn’t such an easy thing to buy because I need a special kind since I am so hypersensitive and can’t tolerate a lot of things. I need a comforter that is extremely light in touch and weight, but warm enough to use in the winter and light enough to use in the summer. Usually these comforters are very expensive, which is something that I can’t afford at the current moment. However, it really is a problem because I can’t tolerate a heavy blanket on me. But at least I can’t say I didn’t get my money’s worth because I got a good 10 years worth out of my this comforter. I just wish it would have lasted longer because I loved it.

To make matters worse… you know the saying that “when it rains, it pours!” I have to get new glasses because I am having trouble seeing and unfortunately I need special glasses that are extremely expensive. My eyesight is horrible and as a result, I need to have prisms put into my glasses, as well as I need progressive lenses. Therefore, the lenses alone become very costly and even though the eyeglass doctor does give me a discount and I am using an old frame, I am still forced to pay close to $1000 for just the lenses. I don’t know how on earth I am going to afford everything.

As you can see money is really hard to come by and that is why I am desperately pleading for help! The medical bills that we have are snowballing out of control and we can barely even pay our mortgage anymore. Even putting food on our table is getting hard. I need so much medication and we can’t even afford that. So, if there is anything that anyone can do… whether it is donating, spreading the word of my website (www.gofundme.com/fallonmirsky), hosting a fundraiser, etc., I would really appreciate it.

10517292_10101191584237620_8500588507783762177_oI recently also got to do something very special with my mom. We did PAINTNITE together and it was really amazing. I really don’t get to do a lot, but this was a very rare occurrence. It just so happened that they had it in the area and it was given on a Sunday afternoon. It was extra great and special because I got to do it with my mom. I got to spend the entire afternoon painting and spending time with my mom. We really thought that we wouldn’t be able to paint the picture, but to our surprise… it came out really good. They really took you through each step and in the end both my mom and I were so surprised with our paintings. My dad even said that he was going to hang our paintings in his office so that everyone can see when they come in.

Speaking of PAINTNITE and how fun it is, I was thinking actually of having it as a fundraiser. They do fundraisers, but the thing is that I need a place to hold the event. If anyone knows of a place that can hold the event or wants to do this fundraiser for me because to be honest… I really don’t have the energy or the ability to organize a HUGE event like this…I would appreciate it. I can help you organize it, but I really would need to work with someone. If interested, you can check the website out at http://www.paintnite.com/pages/group/index/boston?source=fundraisers. They supply everything. They can raise over $700 and all you need to have is a minimum of 35 people. It can accommodate up to 150 people, and catering and drinks can be included for an additional fee. Let me know if you are interested at Femirsky@gmail.com.

In the meantime, I am still trying to keep a positive attitude. I am trying to keep my brain alive and trying to keep it “going” as much as possible before I lose that too. I have been reading “SILKWORM” by Robert Galbraith. It is actually written by J.K. Rowling, but she is writing under that name. I also want to read and plan on reading the book “ALL FALL DOWN” by Jennifer Weiner because it seems like it would be interesting to read because it is a remarkable story of a woman who is addicted to pain drugs and then finds her way back. I also plan on reading of course James Paterson’s newest books because I am one of his biggest fans. I have read basically all his books and he has released 2 new books lately that I have not read. It is amazing how many books that he has written and they are still great books to read.

Well… I guess that sums everything up that is going on here. Of course when I know more info I will write more. I found out recently how to make a quick soda slushy. It is really cool especially when all I can do is drink slushy’s anyway. I am not allowed to drink regular liquids because I become too bloated and it makes me aspirate even more. So I was told that anything that I drink has to be in a “slush” form. So at least I know how to make a slush fast in case I need it. It really is quite easy to do and it comes out really great. I like to call it a “slushy in a hurry!”

Well… thanks again for all your support. I can’t thank you enough for all that you have done. I definitely wouldn’t have made it this far without the help, support, and encouragement from all of you.

Best,
Fallon

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