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.
I 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.
But 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.
I 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.
Speaking 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.
George 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.