I just wanted to write and let you know the absolute latest because so much has happened in the past few days. I was supposed to be leaving this week for the Cleveland Clinic, as I was scheduled for heart surgery and multiple appointments, but unfortunately due to finances and other events occurring, we had to cancel them and reschedule them. I only hope that I will be able to last long enough to be able to have all the surgeries that I need because now that these surgeries and appointments were delayed, it also delays the entire process. It pushes back getting my colon taken out and the transplant. Therefore, it means that it leaves me more time to get sicker, which is definitely something I can’t afford. Time is definitely not on my side at this point in time.
I am really suffering and really deteriorating, but unfortunately things are not working out like they should. I was really hoping that everything was going to go according to plan and I would be able to receive all the necessary surgeries that I would need and I would be on the road to recovery and getting my life back. But like always, I hit another huge hump in the road.
We are really suffering in the financial area. That is one of the main reasons why it was impossible to go to Cleveland Clinic this week. There is only so much money you can “charge” on a charge card and take out on loans. That is why I always ask for help because without the help of others, it is literally impossible to get well. Everything costs money!! I am surprised that they don’t even charge you for the air that you breathe. Anyway, since my medication, procedures, doctors, traveling expenses, etc. are so expensive; we really can’t afford it anymore on our own. That is why I am hoping that others will help spread the word of my website or help me “fundraise” so that I can receive the much-needed funds so that I can receive all this stuff that I need to survive.
As I am getting sicker and sicker, I have had to travel more and more to Cleveland Clinic. I also have to spend longer times there and I have to have more procedures and surgeries. Therefore, it is more important than ever to try to raise as much money as possible because we had a hard time affording all my medical treatment before. However, now that I am sicker than ever and I need to go to Cleveland more often and such… it is even worse. It even makes it harder because when we go to Cleveland, my family really doesn’t make any income whatsoever to pay the bills. Since my dad is always with me when I go to Cleveland, he is not available to work and bring in a salary. Although my mom stays back in New York to try to keep the business going, she can only keep the “office work” going by answering the calls, but in terms of jobs happening and bringing money in… it just isn’t possible. I am so scared that something is going to also happen to the business because there is only so much that my dad can stay away from the business because customers are not going to want to “wait” for him to return. When they want a service, they want it NOW!!
So if you can please help me to raise funds so that I can receive the lifesaving treatment that I need, I would extremely appreciate it. Whether it is by spreading word of my website (www.gofundme.com/FallonMirsky) or having a fundraiser, it would be much appreciated. If you have any questions, please feel free to contact me at Femirsky@gmail.com
In addition to the insufficient funds, I also developed a massive infection in my mouth and my jaw ended up caving in due to the osteonecrosis. Therefore, it really made a huge problem for the surgery that was supposed to take place on Monday. But even without the infection occurring and delaying the surgery, there would be no way that I could have the surgery because I wouldn’t be able to stay the length of time needed for the surgery because we didn’t have the money.
I was scheduled to have heart surgery and to have central lines placed this past Monday. This was all being done in preparation for the colon being taken out and then the transplant. The doctors also wanted to have central access to me because I am getting so sick and they wanted an “emergency” way to get stuff into me in case something should happen. They also felt it was a good idea because they were scared that with everything happening, I was going to get an infection or something due to all the multiple needle sticks and everything. Plus, they were hoping that with these lines, it would save me the trouble of having to be stuck all the time with needles because I can’t take the pain anymore and I am suffering enough. They also wanted the lines to give me medication and especially TPN. They were hoping to give me at least 2 weeks of TPN prior to getting the colon taken out so that I will be better nourished, which will have made me stronger for the operations. After all, these operations are extremely dangerous and intensive even for a normal person. So you can just imagine how dangerous and hard they will be for me when I am so fragile and everything is “magnified” for me.
The plan was that I would have the lines placed and then I would spend about a 2 weeks in the hospital getting used to the TPN. Then they said that they would allow me to go home for about 2 weeks while I continued to receive TPN and got a bit stronger for the operations. I would then return for the removal of the colon, which I would have to stay there for 3 weeks at that time. However, that was the plan only if I could tolerate the central lines and the TPN. If I couldn’t… I was stuck there until the surgery to have my colon removed, which was definitely something we couldn’t do because there was no way that we could afford for me to be there all that time. We didn’t even know how we were going to afford just the 2 weeks that we were going to have to stay there initially. There was no way we would be able to stay there longer.
If I wasn’t able to tolerate the lines or TPN, they said that I would have to remain in the hospital to have it done until I got the colon taken out. While I was in the hospital, I would be under Ketamine sedation to try to make me as comfortable as possible and that is why they would have to keep me there while the TPN did its work. Therefore, I would have to basically spend the entire 5 weeks that this entire process is going to take all at once instead of being able to divide it up and come home for a bit in between, which would also be time where my dad could have worked and we could have brought in some money from working.
5 weeks would have been the minimum that I was going to have to stay there. Either way it was going to have to come out to spending at least that amount of time there. It just mattered whether I was going to be allowed to come home in the middle or I had to stay there and it had to be done all at once. In addition, after the colon was taken out, it would determine how urgently I would have to have the transplant. If the small intestine were really badly affected, I would need the transplant sooner than ever. After all, I am being intoxicated and poisoned because of my severe gastroparesis. I am literally having poisons spilling into my bloodstream and entering my organs and brain. It is literally killing me. Something needs to be done and done fast because I am becoming intoxicated.
But even though the operation was cancelled, we were still planning on going to Cleveland tomorrow because we were scheduled to see pain management and endocrinology. However, even this has changed, as we are no longer leaving tomorrow. We are now scheduled to see pain management on September 24th because we are going to see my old doctor who is supposed to be the most ‘knowledgeable’ about my neurological illness.
We decided the trip on me was going to be way too much. The traveling is definitely too much, and it really takes a huge toll on me. In fact not only do I lose weight when I go which is definitely something that I can’t afford because I already weigh in the lower 60s and every pound is so crucial. Once I lose it… I can never gain it back. I’m so weak all the time and it is especially worse than ever. So since traveling makes me weaker… they wanted to make sure it was definitely worth it. It takes me over a week at least to bounce back after we come back.
I was originally given an appointment with another doctor because my old doctor was ‘retired’ and not seeing patients anymore. We were supposed to see this one doc in pain management and we decided that we are better off postponing because even though this doc was somewhat knowledgeable in my condition and everything… my old doctor is really the guru in my illness. To be honest, not many doctors know about my neurological illness. A lot of doctors claim that they do, but they really only know the basics. The doctor that I am seeing on the 24th actually is one of the founding fathers of my illness as he has done research in the area, publicized on it, and spoke about it. So we didn’t want to go to Cleveland and see a doctor that wasn’t as knowledgeable as he was and couldn’t really help me. You know? After all… I had more than the “normal” types of treatments that would typically be given for this illness. I need topnotch doctors because of how extreme my case is. So since my old doctor is just seeing patients one day a week and only seeing ‘old’ patients, we decided to cancel the current appointment that we had with the doctor tomorrow and go with him.
The only thing that I am a bit worried about in not going tomorrow is that I did have an appointment with the endocrinologist and I really honestly needed that appointment. I have a pituitary tumor that needs to be handled and I also need a bone infusion badly because my bones are sooooo bad and basically crumbling. I’ve had to stop the bone infusion because my endocrinologist here literally got afraid because of the osteonecrosis. The doc said that I still should have it done but since it was the endocrinologist dispensing the infusion and literally bring held responsible… He of course wouldn’t do it. The osteonecrosis doc said that the benefits definitely outweigh the risks and told him how desperately I need this infusion but if course the endocrinologist wouldn’t do it. What do u expect from an old timer?? He was a chicken. So I had no luck whatsoever having it done here and desperately needed it because the bone infusion actually ‘builds’ bone and I was even still losing bone with the infusions… So u can just imagine how bad I’m doing these last two years without the infusion. I don’t want to even know or guess. They are so afraid that I’m going to get literally a life threatening fracture because of how fragile I am. I desperately need that infusion. All the docs say so but of course there’s no one here to do it because the endocrinologist here refuses to do it. So I was going to Cleveland to meet with this top endocrinologist. She was famous for not only the pituitary tumors but also for the infusion.
But we are really on the fence as to what to do about attending that appointment. My dad doesn’t know if it is honestly worth going for this appointment or postponing it until we come back on September 24th. My dad is scared we are going to go all that way and the doctor is not going to do that infusion after all. So he doesn’t wanna travel all that way for especially one day because it takes so much out of me and it’s not like we have the money to just ‘give out’ for nothing too. But of course they won’t give me an answer whether they will do it not do the infusion until AFTER they see me. So we don’t know what to do. I agree that it would suck to go all that way and pay all that money for them not to do it. But then again I desperately need it and they aren’t doing it here. They are ‘supposed’ to b doing it there but who knows once they see me and goes over everything. U know what they say ahead of time and then what they say when you actually see them are two different things.
So like I said… we are thinking of postponing the appointment to when we come back for the pain management appointment because this way we kill two birds at the same time and don’t just make a trip for one day. But what stinks is that if we meet with the doc and she wants certain testing prior to the infusion… I won’t b able to really get it. At least if I went this time and I needed testing or something… I could get all that is needed and then also have the infusion completed when I come for the appointment on the 24th instead of then having to wait and come back AGAIN.
I already think she’s going to want another DEXA SCAN before proceeding because she said to bring all records including DEXA SCANS within 2 years. However, I did have one, but I think it was actually 2 years ago. So I bet she’s going to want an updates one especially with my condition and everything before proceeding. So I doubt that even if I went this week to Cleveland that she would do it because she would need updated records, but at least I would be able to then know the plan and have the necessary testing done. And then when I come back on the 24th at least I can have it then.
So it appears that we are going to be putting off both appointments until September 24th. However, it is also contingent on when I have the surgery for my osteonecrosis and infection in mouth and teeth because that takes priority. Not only am I really suffering with this as it is difficult to eat and drink besides it hurting just in general, but it is holding up all the other crucial surgeries that I desperately need such as the heart surgery, placing of the lines, the colon coming out, and the transplant. However, I wont know the exact date of that surgery until Tuesday because my surgeon is on vacation.
Isn’t it amazing that things always happen around holidays and weekends? I find that so much always takes place during that time because there isn’t anyone around!! Nothing ever happens on like a Monday when you have a whole week to work things out. That would be too simple!!
I am still suffering with my right arm being “dead”! I guess it is getting better, but it is definitely still annoying and not the same. I am just hoping that it will still continue to improve and hoping it will disappear. It never happened in the right arm before. Usually it only happened in the left arm and thank goodness it always improved. We don’t know exactly what causes it, but we think it has to do with compression of the nerves or something since I don’t have any “muscle” or anything protecting it. My arm and hand literally go completely numb like when it “falls asleep.” However, it never really ‘wakes up.’ Usually in the past when it happened in the left hand, it was completely numb and dead. At least in the right hand it wasn’t as numb and it is basically the feeling of when it ‘starts’ to wake up and has the tingly and soughta week feeling going through it. It is just so annoying.
So I guess in the meantime I just gotta hang in there. I just hope that these surgeries come soon and that they work because I am suffering so much. I am deteriorating like crazy and I don’t know honestly how much longer I can hold on. I really want my life back already. I am tired of being sick.
On a side note, I was contacted by the “Dr. Oz” show to possibly be on it. It isn’t a definite yet, but it is a possibility. They took down all my information and I am waiting to hear from them. I am not counting my chickens before they hatch because I have been disappointed too many times in the past. But I will definitely keep you posted.
Well… I guess I will be going. If you have any suggestions about raising money or can help out in any way, I would really appreciate it. Please continue to pray for me. I can’t tell you how much I appreciate all the encouragement and support. I wouldn’t have made it this far without you. Doctors are so impressed that I am still alive because by medical standards there should be no way that it is possible. However, I am the energizer bunny rabbit and therefore I “keep going and going and going.” Plus it is through people like you that get me over the humps and keep me going as well! Thanks for traveling this journey with me and standing by my side.