I just figured I would write and let you know the absolute latest because I officially received notification from Cleveland that part one of the transplant is ready. Yup!! I received the call tonight!! I am so very nervous and I to be honest, I really don’t know what is going to happen because of course this means I need to get there ASAP and we don’t have the funds on hand. My head is literally spinning so fast around that I don’t know how to stop it. I am so scared. I am scared to have the surgery because I know how ‘massive’ this surgery is and scared not to have it done because I know that without it I will die.
I can’t believe the phone call finally came in tonight to come out to Cleveland for the first part of the transplant. I knew that it was ultimately going to happen, but I honestly didn’t think it was going to happen so fast. I mean, I didn’t expect it to happen so soon especially since I literally just got home from the Cleveland Clinic a few days ago. I guess this is what the doctors at the Cleveland Clinic meant when they said that what I was going through and having was “life threatening” and a very HUGE “emergency.”
When I had went to the Cleveland Clinic this past week, I had found out so much information… more information than I had ever known. I knew that I was sick before I went to the Clinic, but I never realized how ‘sick’ I really was until I went. When they explained everything to me, I finally understood everything that was happening in my body. There were even a lot of misunderstandings that were occurring in my disease and body because I went to doctors that were not as knowledgeable as the doctors that I am going to now in the Cleveland Clinic. Cleveland Clinic is absolutely one of the BEST hospitals in the country. From actually attending the hospital, there is no question in my mind why that is the case. The entire team of the hospital from the nurses to the staff to the doctors is completely unbelievable. They are so nice and knowledgeable. They don’t just treat you like another patient. They actually are about each and every patient. They know things about illnesses and such that no other places know about. Therefore, they take on cases that no other places will. No wonder it is the Cleveland Clinic that is known for ultimately saving people with life-threatening diseases. I only hope that I will be as fortunate.
When I went to see them a few days ago, I finally learned that it wasn’t the medicine that was making me so ‘tired.’ Besides all the pain that I have been suffering from that has been unbearable, I have been really tired lately and been sleeping a lot. I have also been having a feeling of my brain feeling a bit “cloudy” as I didn’t feel like I was thinking as clearly. A lot of doctors have been attributing all that to the medications that I have been taking, as I do take more medicine than anyone can believe. I take over 50 pills daily and it would certainly kill a horse. Doctors are even amazed that someone the size of me could withstand taking so much. But even taking this amount of drugs, it doesn’t even really have any affect on me. Therefore, I did find it strange that the meds were supposedly causing all this ‘tiredness’ and ‘cloudiness’ all of a sudden when I have been on them for such a long time. It just didn’t make sense. It wasn’t like we really changed anything. You know?
Well… it appears that due to my illness and severe gastroparesis, my organs have basically ‘died.’ My GI system doesn’t function any longer and in fact, I am being intoxicated and poisoned by it. It turns out that my colon is especially toxic and all the toxins are pouring over into my bloodstream and spreading to the rest of my body, which is causing my body to shut down and fail. The toxins are causing me to have cirrhosis of the liver and it is even going to my brain. That is why I am so tired and feeling so cloudy. As it is getting worse and worse, I am feeling worse and worse. The more it continues, the worse it will get and it will ultimately end in coma and in death. Therefore, I desperately need a transplant to get rid of these toxins before it is too late because they are poisoning me and will kill me. Yet, a transplant of the GI system is extremely dangerous. In fact, it is the most dangerous transplant you can have. Only like 6 hospitals in the country perform this operation. I need a new stomach, small and large intestine, spleen, liver, pancreas, etc.
However, since I have this autonomic dysfunction and also this neurological disease, we don’t really know how my body is going to function to the transplant either. Therefore, the surgeon is kind of hesitant to transplant me because he doesn’t really know and understand completely the “enemy.” Yet, he has told my dad and me “if I was his daughter, he would transplant me immediately.” Yet, he said, “since he doesn’t know the enemy completely, he wants to take it slow and do it in steps, as he learns as much as he can about how my body will react to the transplant and what exactly to do in terms of precautions because of how ‘sensitive’ and reactive my body is to everything that is done. “ As a result, he is going to be taking the colon out first because that appears to be the most toxic organ of the body at this time while he learns as much as he can about my illness.
Therefore, the first part of the transplant will be removal of the colon. I will just be missing the colon while we wait for the FULL transplant, which I will then receive the other organs. He will also be learning all that he can about my illness during this time. The doctor is doing tons of research. In fact, he is actually sending out other doctors to do research as well on my disease. He is calling all the top doctors in the world regarding my illness and even calling doctors that are in “retirement” out of retirement that might be familiar about my illness. The doctors all him a ‘terrier’ in the sense that once he gets his teeth into something, he doesn’t give up. I am only hoping that he doesn’t give up on me because I am so very sick.
The doctor is especially awaiting for one particular doctor to get back to him. I gave him a few doctors to contact that might be able to help him, but the doctor is particularly waiting for Dr. Schwartzman to call him. We are only hoping that my doctor, whose name is Dr. Kareem, will be able to contact him because he has retired this year. Dr. Schwartzman is supposed to be one of the top doctors in my neurological disease and was practicing at Hahnemann University in Pennsylvania. When you wanted to see him, you had to literally wait at least 2 years to see him because that was how long the waiting list was to see him. I had seen him, as he was my doctor as well and Dr. Schwartzman also confirmed when he had seen me that I was one of the worst cases that he has ever seen in his life. As he was also doing research in my illness, he also took my blood so that he can use me in his research. He had told me that “we may not necessarily be able to help you, but you may be able to help others in the future.” So… of course I had no objection of giving him my blood to study because I would do anything to help others and so that others wouldn’t have to have the same misfortune of suffering from the same miserable fate as me.
It turns out that Dr. Schwartzman had just retired this past summer. However, it turns out that it is essential that Dr. Kareem talk to Dr. Schwartzman because even though I have given him other doctors who might be able to help him, it is Dr. Schwartzman who actually did research and found a clear link to what is happening in my GI system to my neurological disease and autonomic dysfunction. He actually saw a linkage between the toxins and the intoxication that is occurring in my body to the neurological illness and autonomic dysfunction and therefore Dr. Kareem wants to know about this and ultimately what will happen when I am transplanted and everything. I knew that Dr. Schwartzman did research in my illness, but I never knew that he actually found a linkage in this. So I am only hoping and praying that Dr. Kareem will be able to speak with him because he can be a very important piece to the puzzle.
Dr. Schwartzman also knows and understands how my disease spreads. Abnormal signals cause change in neurons and causes the loss of magnesium blocks. This causes calcium to enter the cells. When this occurs, very bad stuff happens and the disease manifests and spreads. Dr. Schwartzman is a crucial piece to my illness because he discovered how important Ketamine is to be given during the surgery because it is the only medicine that will help keep the neurological disease and autonomic dysfunction at bay. It is an NMDA receptor that will block the disease from spreading.
But in the meantime, I need to definitely have the colon taken out, which is the first part of the transplant because I am literally dying. I am literally being poisoned and if it doesn’t come out, I will soon die because it is literally poisoning my entire system. However, we don’t know how my body will react. We don’t know if all the toxins and poisons are just coming mainly from the colon or if it is really coming from the other organs as well. If they take out the colon and they find that the toxins are coming from the other organs as well, they will have to then transplant immediately. So all bets are off between how much time they will have after they remove the colon and how much time they have for the rest of the transplant to occur. The doctors really have no idea how my body is going to react or what is going to happen after the colon is removed.
So I knew that the colon had to come out as soon as possible because I would die otherwise, but to be honest… I wasn’t expecting it to be so soon. I literally just got back from Cleveland a few days ago… not even a week and I am already getting the call to come back for the surgery. I am so scared. I am scared because I don’t know how on earth we are going to afford this. It is so very expensive and we don’t even have the funds to go back to Cleveland let alone stay in Cleveland for the surgery and have it. Even though the surgery is somewhat covered by the insurance plan, we still have copayments, deductibles, living expenses while we are there, traveling expenses, etc. I don’t know how we are going to do this especially since it isn’t just a matter of being there one day. Instead, we got the phone call that they want us back on Tuesday for appointments for pre-surgical testing, which will be taking place that day and on Wednesday. They will then allow me to go home and I will then return on Sunday, August 24th to have the massive operation. When I come for the operation, they want me there for about 3 weeks about. I don’t know how on earth we are going to afford it especially since my dad won’t be working during that entire time, which means no income at all.
Gosh… when I got the call today, they told me that they needed me the 12th for testing for the upcoming surgery. When they said that, I automatically thought that they meant September 12th. Little did I know that they meant August 12th, which is only literally in a few days. How on earth am I going to come up with the necessary funds, make the traveling arrangements, and get there in such a short amount of time. I hate Fridays because it always seems like all the big stuff happens on Fridays because you can’t do anything really on the weekends. I really can’t contact doctors or make plans or do anything until Monday and by then… it is literally too late because I have to really have all arrangements made by then since I have my first appointment on Tuesday afternoon. I have no idea what we are going to do. I am so scared but all I know is that we have to find a way of getting funds. That is the priority at this point because we need plane tickets, hotel arrangements, etc. Obviously they aren’t going to give me those for ‘free’ or because my name is “Fallon!”
So we are really scrambling looking for funds and hoping that we will receive some donations. They are so desperately needed. If you can please spread the word that I need to get to Cleveland for part one of this massive transplant surgery, I would really appreciate it. Of course my fundraising website is http://www.gofundme.com/FallonMirsky. NO donation is ever too small and all donations will be MUCH APPRECIATED!!
Speaking about this massive surgery, I am really really nervous. I spoke with the doctors today and I told them how nervous I am. I told them that I don’t doubt their credentials or their ‘ability’ but I am really scared about how my body is going to react and such especially since my body is so ‘sensitive’ and reacts to literally everything. I am especially scared because I know how dangerous this surgery is and how it is really life threatening. All I hear from all my other doctors and other doctors who my dad speaks to is how “massive” this surgery is. In fact, my dad’s cardiologist even told my dad “to prepare just in case things go in the other direction and things don’t turn out so good.”
It is so dangerous that they are putting lines in me everywhere. I told the doctors that I have had surgeries before and I never had to have lines put in me like they are doing now. But the doctors said that this has to be done because I never had surgery like I am having now. They keep saying how “This is the most ‘massive’ surgery I have ever had!” I keep saying that if I hear the word “massive” one more time I think I am going to go through the wall. I can’t hear it anymore. Therefore, they are going to be putting in central lines and everything. Thank goodness I will be technically ‘asleep’ when they do this because this is not the most pleasant thing to occur.
A central line is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood over a long period of time, usually several weeks or more. They are hopefully going to be able to use just a catheter in the arm that will be threaded into a vein and go until it reaches a large vein near the heart. They are definitely going to need it for ‘access’ for medicines and fluids, but they are also going to try to give me TPN as well through this. I have had TPN multiple times in the past, but I have failed it. However, I never had TPN done at the Cleveland Clinic and I am not working with Dr. Steiger, who happens to be the founding father of TPN. So, we are going to try it again since he happens to be the most knowledgeable and best doctor in getting TPN to work. The worst thing that could occur is that it doesn’t work, but at least we will give it a shot.
The doctors would love to be able to have it work because of how small and fragile I am. They would love to give me nutrients before the surgery and afterwards because it would help give me strength and help me recover. This is huge surgery and I will need all the strength that I can have. I will definitely have a huge road ahead of me with this surgery.
This surgery is hard on anyone, but it is especially going to be hard on me considering the fact that I have the neurological disease and autonomic dysfunction. Due to my neurological disease, I have a hard time taking a deep breath, as I have Dystonia of the chest wall muscles.
I am only hoping that while this first part of the transplant is just to remove the colon, I am only hoping that I won’t have to have a colostomy bag. I am deathly afraid of having a bag. When I told the doctor how I really didn’t want a bag, the doctor said to my dad and me “he is not a bag guy!” Of course my dad got the joke immediately, but I was a little delayed on the joke. The doctor said that I have a 99.9% chance of not having a bag because he really would hate for me to have a bag because it would most likely only complicate things. It would lead to another surgery and could lead to another potential complication and can lead to more chance of infection and other things. But nothing is 100% and he said that even though he doesn’t foresee it happening and hoping it won’t, if it did have to happen… it would only be temporary. So at least that is a good thing because I really didn’t want one. At least I also know that the worst-case scenario of getting one is that it is only ‘temporary’ and it will go away. That is another reason how I know the Cleveland Clinic is so amazing. They are the only people who are willing to do this surgery on me. Also, they are going to be doing it without a bag.
I also asked the doctors how they are going to ‘prep’ me for surgery because obviously they can’t clean my bowels and such. Usually when people go for GI surgery, they do a whole bowel-cleansing regimen. Yet, in my case, it won’t work because my GI system is essentially dead.
So the doctors said that they really don’t even want to do anything that is going to ‘stress’ my body out any further than it is going to be during the surgery. They know it is going to need all its strength and everything for the surgery and therefore, they don’t want to waste trying to empty by bowels and everything by having me drink stuff or through enemas or anything like that. Therefore, they rather manually do it during the operation. It is a bit more risky because I will have all that other stuff (i.e. food, meds, etc.) to deal with and it could harbor additional bacteria, but this is the best way to go.
I am really keeping my fingers crossed that things go according to plan and things will go as ‘smoothly’ as possible. The operation is over a 6-hour operation. Yet the doctors have even said that they don’t know exactly what will happen after the colon is removed because it will change everything. I am putting all my trust into them because these doctors and the hospital seem like the best place to be. When I have spoken to other patients, they have said how “great” this hospital and doctors are. They have even said that it is only this hospital and doctors that have SAVED their lives. If it wasn’t for this hospital, these patients claim that they wouldn’t be living. I only hope that I am as fortunate. After all, this hospital takes on cases that no other hospital will. They are known for doing famous surgeries that no other hospital has done such as the face transplant surgeries and others. They do things there that you would never imagine or ever hear of. So I am really trusting them with my life.
When I spoke to the other patients, they have nothing but praise for the Cleveland Clinic. They said that the hospital and staff is simply amazing. Of course I will be kept in the ICU. The ICU is supposed to have a ratio of 2 patients per patient. Each patient is also supposed to have his or her own room and there is a pullout sofa for their caretaker. I am really glad about that because I am hoping that my dad will stay with me in the hospital because I am really petrified to stay alone. The patients say that the rooms and the care of the hospital is like being in the hotel. They said that the nurses are very attentive and they don’t make you wait for anything. They even go around massaging you so that you don’t get stiff and everything. They said that they do whatever they can to make you as comfortable as possible.
When I go for the surgery, unfortunately both my parents can’t be there together. We don’t have the money to have both parents to be there and therefore, my dad will be with me while my mom stays home. I am scared for both. I am scared for my dad because he will be there alone and if something should happen, I don’t want him to be alone. I am also scared for my mom because she is left at home and not knowing what will be taking place. She will be blinded and only left to knowing what is known by the telephone ringing. I only wish I could have both my parents there especially since it is so dangerous and everything, but I know that it is not going to be possible. But I know that even though both my mom and dad won’t be there together, I will be in constant contact with my mom.
Not only will I miss my mom, but I will miss my pets as well. I literally have to pick up my life and go to Cleveland. I will have no comforts from home except for my dad. But thank goodness I will have my dad. My dad is not only my “dad,” but he is my best friend. I know that he won’t let anything happen to me. Thank goodness for SKYPE though because at least I will be able to be only a video chat away from the comforts of home. Perhaps that is one of the reasons why Cleveland Clinic is so nice. They know that patients come from all over the world to this famous place and they leave their comforts of being at home. Therefore, they want the hospital to be as “comfortable” as possible for each patient and to feel like “home” as well!!
So like I said before… I am supposed to be heading there this week, as I am going to have to meet with interventional radiology and anesthesiology this week to go over everything. I will also have to have all my pre-surgical testing as well. However, like I said before, it is of course contingent on the fact that I have the funds because as of right now there is no funds available especially since we just back from Cleveland a few days ago and we have had no time to “regroup” our funds together. My dad hasn’t really been able to work much since we gotten back and we haven’t really made up for him missing the work that he missed when we were gone last week. To make matters worse, this is also his “busy” time of the year and I feel really bad making him miss work. This is the time when he makes the most of his money and if he isn’t here to work, then obviously the money isn’t going to be made. I know how desperately we need the money too because we literally can’t afford any of our bills. The bills have snowballed out of control and we can’t pay for my treatments anymore. We can’t even pay our mortgage and even have difficulty putting food on the table. So, we know how important this time of year is for us because of how much money can be made. If he misses it, it is missed until next year. So I don’t know what is going to happen. I just feel really bad because I don’t want anything to happen to my family because of me. They have suffered enough because of me.
So the schedule is supposed to go like this if all goes according to plan… we are supposed to be leaving Monday or Tuesday at the very latest to go to Cleveland. We have appointments scheduled at 2 PM on Tuesday and therefore, we have to be at the hospital by 1PM. Therefore, it is really best if we leave Monday, but that also means that it is a day sooner and we don’t know if we can afford it or that we will be able to arrange it since every day technically counts since it is so soon and we need to make so many arrangements. I don’t even know how we are going to make all these arrangements by Tuesday especially since we know how expensive hotel and plane arrangements are when you do it last minute. We are even hoping that they have openings because of how last minute it is.
So we are meeting with the team Tuesday and Wednesday. I will be having various final testing, meeting with interventional radiology because they will be putting in the central lines and will need to be on hand for various other procedures, meeting with anesthesiology, and meeting with the team, which includes my doctors and surgeons. I will then hopefully be able to go home first thing Thursday morning. I need to get home because I have my usual surgery scheduled for Friday at Mount Sinai. I will then finally return on Sunday, August 24th, which will be when I will be admitted for the huge surgery. I will then have to be hospitalized after the surgery for 1-2 weeks and then I will have to remain in Cleveland for about 1 week afterwards to make sure that I am well enough to go home. Of course this is if all goes according to plan. However, if they find out that the toxins are coming a lot from other organs, I will have to undergo the transplant as soon as possible, and I don’t know if I will be kept there or allowed to go home and they will wait a bit. They won’t know until they see how I do with the colon out.
I have to go for my weekly surgery at Mount Sinai because I not only need to have my intestines cleaned out because of the toxins, but I am also scheduled for an EGD. If I don’t go for it on Friday, it would mean that I would have to have it done in Cleveland as well, which would mean staying another day. So the doctors have allowed me to do it at home so that I don’t have to stay another day.
It is going to be a long two weeks. But hopefully everything will be ok. In the meantime, I have my mom’s birthday today. I am going to try to be as happy as I can be under the circumstances. I bought her a cake and I am going to try to make it as special as I can. I would love to be able to take her out to a restaurant for dinner or buy her something really special, but unfortunately I don’t have the funds to do that. I also can’t really eat at a restaurant and that really makes going out to dinner to celebrate her special day an impossibility. I feel so bad because she hasn’t gone out for dinner in the longest time. It would be great to go out to a restaurant to eat especially to celebrate such a wonderful day. But hopefully I will get well soon and when I come back from the Cleveland Clinic I will be able to go out all I want to dinner because I will be able to eat again. Hopefully this is the start of my miracle.
So… this is the latest news. I am extremely nervous… I am not going to lie, but I know that this has to be done because otherwise I am going to die. They always say that time changes things, but in actuality… you have to change them yourself!! That is why I need to get to the Cleveland Clinic and help myself ASAP. Life is like an ocean. You got to keep swimming.
Life is like a swimming pool. You dive into the water, but you can’t see how deep it is. But I know that you just have to keep swimming no matter what and as long as you do that… everything will be ok. However, unfortunately, me staying afloat and able to swim is all contingent on receiving help from others.
Like I said before, all this is contingent on the availability of funds. Please help me. Please pray for me. Please help me raise as much funds as possible because I desperately need this surgery as soon as possible. Please spread my link at http://www.gofundme.com/FallonMirsky and help me raise as much money as possible so that I can get to the Cleveland Clinic to have this operation.
Thanks again for all your encouragement and support.