O my goodness. Things are horrendous. As I write this update, I am literally shaking. By the time you finish reading this, you will probably be so confused with info… as my head is ready explode with confusion I just got the worst news ever. I desperately need to find funds because my life depends on it. I never thought I would be so desperate for money, but I am. I don’t mean to be a “crier,” but my life literally depends on it. I need to get back to California because my health is really bad and I just got really bad news today that unless I go back to California and back soon… I am surely going to die. Of course it is all contingent on the fact that I have the money to do so though.
I spoke to my head GI doctor from California today and the news is not good. I kinda was expecting to hear this bad news, but when you are expecting to hear it… you never are completely prepared for it until it actually hits you. I definitely wasn’t as “prepared” for this news even though I knew all of this beforehand. I knew that I was in really bad shape before I spoke to her, but hearing all the stuff that she found and what is going to happen… it really is freaking me out. Knowing it and like I said “hearing” it is completely different.
I have been waiting to hear from my GI doctor in California for a while. However, she hasn’t gotten back to me because of the time difference. She told me that she didn’t know if it was ok to call me because by the time she finished her workload in California, it was of course later in New York and she didn’t know if was alright to call me at 11 at night or so. I told her that she could call me anytime that she wants because I rather hear from her than not hear from her at all. I told her that she could call anytime of the day or night. So… she said that now that she knows this info, she will definitely call me anytime.
But at least I got to speak to her today. The news wasn’t good at all. We sat down and talked for about an hour and went over everything because there was a lot to talk about. We had to talk about the surgery that I had about 2 weeks ago, what the tests showed, and what the prognosis and the further treatment was going to be. Gosh… by the time we finished this conversation… my head was spinning. I couldn’t believe what I was hearing. I am like she said… literally dying.
The GI doctor told me that my GI system is officially “dead” and has officially “shut down.” I can’t believe it. I kinda knew it, but it is now officially confirmed. The only hope of surviving now is the GI transplant, and this needs to be done ASAP if I have any chance of surviving. During this time, I will get a new small intestine, large intestine, esophagus, and stomach. It’s very risky and only 8 hospitals in the country do it. It runs the highest rejection rate of all transplants.
The only place really to have it done is in California. Like I said, only 8 hospitals in the country perform this radical surgery, and Stanford is one of them. Stanford is the absolute best place to have it done because they appear to have the most successes with it even though it hasn’t been done so many times in the past. It is so weird… I was reading up on all the different transplants that were done at Stanford and they said that they did so many different transplants like 800 liver transplants and such, but when they spoke about small bowel transplants, they only said that they did 40. Gosh… what a difference when compared to the huge amount of the other kinds of transplants that they do. But… if it is any consolation, it does say that this is above the national average patient rate.
Due to the gastrointestinal dysfunction, my intestines can’t digest food and absorb the fluids, electrolytes and nutrients essential for life. I am essentially starving to death and my body is shutting down because I am not getting appropriate nutrition. I already weigh in the 60s, so I really don’t even have room to play around with.
I need to get to California to have it done ASAP because I am really deteriorating fast. They wanted me next week but due to funds and such… I can’t get there til August 26th. I desperately need to raise money because these trips are very expensive and so are these treatments. Without these treatments, I’ll surely die. I’m so scared. Right now we can’t afford it and don’t know what we r going to do. It is really imperative I get to California because they have the best doctors and is the best place for my disease. I have seen numerous doctors throughout the country, and this hospital is the best in the country. Stanford is one of the pioneering institutions behind steroid-free immunosuppression, with the goal of diminishing the risk of diabetes, infection and hypertension. New research developments at the Stanford Institute for Immunity, Transplantation and Infection include the use of intestinal stem cells in transplantation and restoration of bowel function. So, with that in combination with their fantastic doctors, I am really hoping that they will be able to help me.
The plan is that we are supposed to go August 26th and stay there for a week. I tried to ask if I could stay shorter, but the doctors insisted that I stay that length of time at the very least. They really wanted me to stay longer, but they said that they wouldn’t hear of me staying shorter than that because there is just so much to do when I go down there. In fact, when I asked the secretary to ask the doctor if I could stay a shorter length of time, it was a matter of seconds that she got a response from the doctor, which was “No… it has to be at least a week.” These doctors really mean business. I really wanted to stay as short as possible because of the cost of the trip and how expensive it is. I don’t even really have the money to go I the first place, so I wanted to stay the shortest amount of time at the very least so that it wouldn’t be as costly. But, they have me seeing lots of doctors when I go down and going for lots of tests and therefore, they said that I have no choice but to stay for at least a week. I don’t know how I am ever going to afford this.
To make matters worse, not only do we not know how we are going to afford these trips, but we also don’t know what is going to happen when it comes down to the actual transplant. After all, this isn’t a surgery where you have it today and go home tomorrow. I will probably have to be in California for a good length of time, which is something that is really going to be hard on my family because of financial reasons. My father doesn’t think he can’t stay with me for that length of time because first of all we can’t afford it and second of all, he has a business in New York and it will never survive if he is away for that length of time. Plus, with him away from the business, there is no money to be made and how are we going to pay our bills or how are my mom and brother going to survive and live in New York with the house and everything since there is no income.
When it comes down to the actual transplant being done, I will have to be in California for a while and I will need someone to stay with me. I will need someone not only to be thereto make decisions in case something happens, but they play a very crucial role in the recuperation process. It has been proven that hearts left alone and patients left alone after surgery end up dying because they don’t have “reasons” to beat. They need to have people to support them especially with this surgery type in order to make it through it and survive. It has been shown that people that have surgery and don’t have others around them during their recovery don’t recuperate well. Therefore, it is crucial to have people around during this time. However, it is going to be difficult to do this when my dad can’t be in two places at the same time. He can’t be with me and have the business survive at the same time. Without him being in New York, there will be no income or anything and there is no way that any money will be made. Yet, I also need him. I don’t know what is going to happen.
So, we are planning on leaving August 26th because my first appointment so far is on Monday with the Transplant team. I am seeing a doctor who is supposed to be amazing with Small Bowel transplants. I am extremely nervous and when I was making the appointment, I asked the secretary about the doctor. The secretary said that this was his specialty, as he specializes in the management and treatment of intestinal failure. He also specialists in nutrition rehabilitation… so he is hopefully the right doctor for me. The doctor e completed fellowship training at Groote Schuur Hospital in Cape Town, South Africa, and is known internationally for leading advances in transplantation. I really hope that he will be able to help me.
I am also going to probably need brain surgery for my brain tumor that is situated on my pituitary gland because it is getting worse and causing a lot of problems too. We aren’t sure if it is going to have to be surgery where they will have to open up my brain or if they will be able to use “gamma knife.” The surgery is very risky because of my complicated medical condition and where the tumor is located, as it is located on the master gland of the body. I have seen doctors in the past and they have been hesitant to touch it. However, with it getting worse and with me taking meds too for my GI system that actually “feed” the tumor, I kind of probably have no choice but to have it taken out. As a result, they are having me see a neurosurgeon while I am done there to see what he has to say as well, but it looks like brain surgery is on the table as well. Everything is in a state of chaos.
To make matters worse… I also have to meet with another surgeon. This surgeon is for a gastric pacemaker. The doctor is talking about possibility of doing a gastric pacemaker because there isn’t anything else left as an option to do. The doctor said that she doesn’t even think it will work, but it’s the only thing left that we haven’t tried and can be an option. However, the doctor did say that if we have to be aware that they are only doing it as a “last resort” and because “there’s no other options left so they are just going to try it as an experiment.”
The thing is though that it would only help my stomach. It would do nothing for my intestines and therefore, we don’t know if it is worth it since my intestines are essentially dead as well. Also… the doctor is kinda scared to do the pacemaker because it’s invasive surgery and she’s scared that it will really flare up the neurological disease and cause even more problems, especially since its basically on the rampage and spreading like a wildflower. She said that since I’m so thin and everything…. She’s scared it would cause my neurological disease to get worse because it’s surgery, which us traumatic in itself, and then it’s machinery that’s being implanted into me. I’m really thin as it is, and since there is not a lot of “padding” and “cushioning”, she’s afraid it’s going to startup the neurological disease and makes it worse. But in the meantime when we go to California, she is having us meet with the surgeon for the pacemaker to discuss it as well. My dad and I really don’t know what to do. It hadn’t been proven to work and then with my underlying neurological disease… We don’t know if it’s worth risking it spreading. But then again… We are desperate and there’s nothing else to try.
The doctor told me that when she operated on me and did the exploratory procedure, I was one of the worst cases she has ever seen. Everything in the GI tract like the esophagus, stomach, intestines, etc. was way too dilated. In addition, all she could see was bile, bile, and more bile. Of course there shouldn’t if be that much bile, but she said it was probably because my intestines and stomach weren’t functioning. Now I know why I’m always vomiting up bile.
The doctor also removed parts of my esophagus, stomach, intestines, etc. to further biopsy them. It turns out that in my esophagus, I have too many eosinophils, which isn’t good. It could either mean that I am allergic to something in my belly or because of all the bile that is in there. But it’s too difficult to determine which is the cause, but she’s leaning towards the latter… Especially since I have such a high eosinophil count in my blood too. This isn’t good because it causes dysphagia in my esophagus, otherwise known as extreme difficulty in swallowing. Besides the problems of having my esophagus being “paralyzed” and having motility problems of my esophagus, I am having severe swallowing difficulties. The high eosinophil count makes the esophagus close up, which causes further swallowing difficulties and can be the cause of why I am aspirating too.
In addition, the doctor also found out that there were also absolutely no contractions in my stomach or intestines. I kinda knew that already because the nurse told me, but of course I needed the doc to say it in order to make it “official!” Anyway… It kinda means my whole digestive tract is “gone!” There’s nothing really else that can be done.
After speaking with the doctor, the doctor also wanted to change my medication. First of all, the doctor wanted to put me on a new medication called Zithromax. She thought that might help me be a little more comfortable. However, due to all the medication that I am on (as I take over 50 pills a day), there was surely an interaction. It turns out that there was an interaction with the methadone and I don’t know now if I will be able to take it. I already have a bad functioning heart because of all that is happening and as a result, I already suffer from prolonged QTs among other things. It turns out the Zithromax with the methadone would produce prolonged QTs and therefore, we don’t know if it is wise to take this medication because I am already suffering from this and it can be life threatening. I am still awaiting to hear from the doctor what to do because I don’t know if it is “safe” to take this new medication. The only thing is that the doctor did say that this is the only medication that is a possibility that could help me so if I can’t take it, I don’t know what other option I will be able to have.
The doctor also wants me to continue taking the Octreotide injections. I took it before the surgery and had an allergic reaction to it. She then gave it to me during the surgery again, and I had another reaction even though it was less because it was in a “controlled” environment and I was given Benadryl prior. I really hated this medication because of the reaction I got from it. Not only did I get the “itchies” from it, but it also killed when I took it. I never had an injection that hurt so badly. However, the doctor told me that I should try it one more time and if I am not able to tolerate it, then I should stop it. This is just another injection to add to all my other injections, as I already take two. It just stinks that I have to put them all in the same place every single day because I have to put them into “fat” and the only place to put them is in my stomach.
Speaking of injections… I have to start another injection for my bones. I have had a really bad allergic reaction to this new med as well in the past, but due to my bones deteriorating the way that they have, the doctors are extremely fearful that I am going to get a severe life threatening reaction. As a result, the doctors want to do something to try to “help” me, as my bones are deteriorating rapidly and getting worse and worse. Therefore, the doctor is going to try the injection again even though I had a reaction to it prior. He wants me to come to his office to do the first dose and then I will remain with him for a couple of hours afterwards in case something happens. So… that is taking place this Friday.
Even though I am deteriorating and I was told that I am literally “dying,” you know what I told my head doctor in California? I told her that I was just talking to my endocrinologist and he even said, “medically… there should be no reason that I am living.” He said “You must be doing something right because there really is no way possible that a person should be living in the state that you are in. We would have thought you would have died a while ago. It is amazing that you are still around.” No one knows what I am doing, but obviously I am doing something right if I am still alive because nobody usually lives at the weight that I am at. Plus… I am not malnourished at all. I mean… looking at me you can clearly see that I am malnourished because of the way I look because I am bone thin. I am essentially a walking skeleton. However, according to bloods and such, I am not malnourished at all. If you didn’t see me and you only saw my bloods and such, you wouldn’t think that I was malnourished at all. Even the doctors think that is amazing because all my proteins and vitamins are amazingly good. You would think that with all the vomiting and with all the not eating that I would be malnourished, but I am not. It is simply amazing. I told the doctors that if I haven’t died with all that I have been through so far, it isn’t in the cards for me. They said that they “hope that is true.”
If you think that this isn’t enough, I did find out even more info today. I also found out my bloods dropped again today. Gosh… I don’t know how much more my body, especially my heart, can take. At least they aren’t putting me in the hospital as of yet. They aren’t putting me into the hospital because they don’t think that it will help me and it possibly will even hurt me. They all think that the best place for me is in California, so it is imperative that I get back there.
When I did speak to the doctors in California today, I told them how much I am trusting them. I told them how much we are putting my life in their hands and told them how much we are depending on them to “save” my life. I told them how I don’t want to die and I am depending on them to “help” me. The doctor said that I am a very complicated person and that they are all trying as a “team” to help me. They aren’t giving up on me.
I must say that I do have one great team of doctors in California. They really are the best. The only thing that stinks is that they are on the other side of the country.
In the meantime, I have written letters to my parents just in case something should happen to me. After all, you can never be too prepared, right? In the letters, it explains everything to them. It tells them how I felt about them, how much I loved them, how much I appreciated everything that they did for me, etc. It also explains where everything is located so that there are no “loose” ends and everything can be taken care of. It is so that they know where everything is and what to do. It also has names of contacts of people who need to know that the time has unfortunately came. I did explain in the letter that I don’t want them to cry over me because leaving them was not a “punishment” for them. At least I am out of my suffering and at least they can have their life back because not only have I been suffering in agony 24/7 365 days a year and never had a break, but I have been such a burden to my family. They really have given up so much for me and I can never tell them enough how thankful I am to them and how much I love and appreciate all that they did for me.
I really need to get back to California. I am desperate because my life depends on it. But like I said before, it really depends on money. Without that… it is going to be impossible to go, which only means one thing… I am going to die. I really don’t want that to happen and therefore, I am pleading for help.
I have tried so many ways to get help… flyers, websites, contacting the media, writing to people to ask for help, etc. but nothing has really come about. I desperately need help and I need it now because I am at the point where if I don’t receive it now, I am definitely going to die. I am hoping that people will be willing to help me out because if the shoe was on the other foot, I am sure that they would want the same. I know that money is tight because the economy is bad, but this is my life we are talking about and it is too precious to be lost. I really don’t want to die.
If there is anything that you can do… even if it is a suggestion as to a way to raise donations, I would really appreciate it. I have a donations tab at the top of my page to click, which will bring you to a site that accepts donations for me as well. Checks can also be sent to my parents Gail or Perry Mirsky at 246-10 Francis Lewis Boulevard, Rosedale N.Y. 11422. Any help that you can give, would be greatly appreciated. I am asking from the bottom of my heart. It would really mean a lot to me. I don’t want to die.
Well… that appears to be all. I will keep you posted on what is to come. I am sure that there will definitely be more soon because my life always has something happening. Never a dull moment… that is for sure. Just if you can… please help me because I don’t want to die. Sorry to be a “crier,” but this is my LIFE we are talking about. You only get one chance at it!!