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.
I 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.
Well… 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