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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June 25, 2014

10496120_10101179281881640_5560678610146874629_oHey-

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

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

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

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

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

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

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

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

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

Love,

Fallon

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June 19, 2014

10446159_10101180674016790_1674656976935039610_oHi!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Best,

Fallon

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June 18, 2014

10496120_10101179281881640_5560678610146874629_oHi-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Best,

Fallon

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June 13, 2014

10320981_10101171126739610_2318663981563502435_oHey-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Fallon

 

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June 10, 2014

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Hi-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Fallon

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

 

 

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