Just wanted to give an update on what is going on because it is getting closer and closer to Monday. Monday is the day we are supposed to be leaving for Nebraska, so it has been a really hectic week trying to get everything situated. I really haven’t been doing well, especially this week… but I just have to hang in there a few more days because Monday is just around the corner.
I am really getting afraid that I am not going to make it to Monday because of everything that is happening. I am rapidly deteriorating and I can feel my body just weakening. My dad just keeps pacing the house saying, “you belong in a hospital” and “just hang in there… Monday is just around the corner.” I agree that Monday is really close, but it still feels so far away. Plus… I am really worried on the impact that the traveling is going to do on me because it is really stressful on my body. I am already shuttering at the fact that I have to get on a plane and fly to Nebraska in a few days. I wish I could go to Nebraska and get all this done without really “going”… if you know what I mean!!
Traveling is not the easiest thing on me. It really is a big deal. I am so very weak and it really is exhausting when it comes to traveling. It takes a lot out of me and it really stirs up my disease. Usually it wipes me out and flares up my disease mega time. My body usually “shuts down” by the time we get to our destination that I usually can barely move and usually collapse. Whenever we get to our destination, my body is usually like in a “coma-like” state because it basically “shuts down.” It takes forever for my dad to get me up or even to get food into me because I can’t even move. I literally collapse and that’s it. What do you expect though when you are very sick and weigh basically nothing? I have no energy to do anything.
The doctors will probably heavily medicate me like they always do in order to get me to Nebraska. I am in extreme pain all the time and with me being in a cramped up plane, as well as all the traveling, it will really be painful. I am extremely hypersensitive and I can feel everything. The change of altitude of the plane going up and down isn’t good for my condition and not only does it exasperate my condition and give me more pain, but it triggers off my autonomic dysfunction and makes it even more difficult to breathe. It is just horrible. My dad and I are always scared that the plane is going to have to make an “emergency” landing because of me.
But… hopefully everything will be ok and we will make it to Nebraska safe and sound. The doctors will be picking us up at the airport, which is something I never heard of in my life. I bought some warm clothing because I heard how cold Nebraska is. With the holidays coming and Cyber Monday just passing, I was able to get some really good deals and some cute stuff. I can’t wait to wear it. I got a really nice pair of suede gloves, a hat, as well as earmuffs. I like the earmuffs, but my parents say that it probably won’t keep me very warm because it doesn’t really cover my head. I love the hat too though. I have wanted this hat for a very long time, but it has always been way too expensive. However, with the holidays being here and it being CYBER MONDAY, I got a really good deal on it. I don’t think it is “today’s style” either so it was further discounted. But who cares as long as I like it. Too bad I can’t wear both at the same time because they really are nice.
I am really nervous about going to Nebraska. It can’t come soon enough. I just hope that they can help me because time is really of the essence. Things are just getting so bad. The amount of mucous that is coming out of me has greatly increased and I am so thirsty that I can’t do anything to quench it. I imagine that I am so thirsty because I am dehydrating due to the fact that I am having so much mucous come out of me. I am also bleeding a lot more. They don’t know where the bleeding is coming from, but hopefully when I go to Nebraska, they will find out. I am not only bleeding in my stool and mucous more, but I have blood in my ears and sometimes I spit up blood as well. This is definitely not a good sign. But… the doctors have tried looking into where the bleeding has been coming from in the past, but they have been unable to find it because all the tests have not been able to be done for one reason or another. Due to my extreme paralysis of my GI system, they can’t do a colonoscopy or anything, even though they have tried various ways to empty me out and such (even putting a NG tube in me and such). But… hopefully Nebraska will find everything out.
I have also contacted the CLEVELAND CLINIC. A friend from school contacted me because her father helped me out by giving me a name of a doctor there. Her dad was my Orthopedist when I fractured my growth plate in 4th grade. I am so thankful for her and her dad because the doctor that they gave me seems like one amazing doctor. When I went to California, the doctors told me about how the hospital in Pittsburgh was the best place to have my transplant at one time, but the surgeon there left and they didn’t know where he went and such. Little did I know that the surgeon that my friend’s dad was going to tell me about was going to be that surgeon?
It turns out that the surgeon left the hospital in Pittsburgh and went to the Cleveland Clinic. My transplant is extremely rare, and only 8 hospitals in the United States perform it. It is very risky and dangerous, as it runs the highest rejection rate of all transplants. So, I want to have the best doctor perform it. Even though Nebraska is supposed to be the “largest” center for intestinal transplants, they really don’t do multi-organ visceral transplants, which is the type of transplant that I require. They would give me a transplant of a small intestine and remove my stomach, but I need much more than that. I need a transplant of a stomach, small and large intestine, as well as a pancreas. I might even need an esophagus. Just getting a small intestine and removing my stomach is not going to do the trick because my entire GI system is just too far-gone. But, the Nebraska hospital did say that they would operate on me as multi-organ, but I would be like one of the “first.” Who would want to be the “first?” I know that this transplant is risky as it is, as hospitals only do 1-2 a year, but to be one of the first… that is a different story.
I much rather go with a surgeon who has done more of my transplants even though the center may not be as “large.” The doctor that is at the Cleveland Clinic is supposed to be world renown and has been doing them for close to 30 years. He has supposedly done more multi-organ visceral transplants than any other doctor in the world. I found out that he has the longest surviving intestinal and multi-visceral transplant recipients in the world, surviving more than 19 years post-transplant with excellent quality of life.
I also found out how he pioneered different methods for the transplant so that patients can better accept the organs. He has done studies and found results that supported the minimization of immunosuppressive therapy for intestinal and multi-visceral transplant patients. He found that survival rates for such transplant recipients greatly increased as treatment strategies evolved; this included the reduction in the use of immunosuppressive therapy. That is really a good thing for me because that was one thing that the doctors were really worried about because I have autonomic dysfunction as well as an autoimmune disease. So… they were afraid for the transplant and afterwards (with the anti rejection meds) because I have no immune system whatsoever.
It seems like this doctor really helped these the survival rates for these transplants. Initially, transplant recipients were treated with the immunosuppressive drug tacrolimus and steroids. In 1994, this protocol was discontinued due to high mortality and morbidity rates. The five-year survival rate for these patients was 40 percent. Nowadays, patients are given a pre-conditioning protocol with agents that deplete recipients’ own immune calls. Their post-transplant drug regimen is minimal and initiated with tacrolimus, followed by steroids when necessary. Tacrolimus doses are subsequently spaced to a single dose twice to three times per week with a careful weaning process that are started three to six months after transplant. Through the use of new immunosuppressive and management strategies, the five-year survival rate for patients increased to 68 percent, which is similar to any other abdominal and thoracic organ transplant procedure. He earned that patients who are using multiple anti-rejection drugs over a period of several years may experience long-term detrimental effects, which erodes survival rates beyond 10 years post-transplant!
In addition to this doctor being so knowledgeable and such, it is also a lot easier to go to Cleveland than to the other places. Even if there was an emergency, we can get to Cleveland much faster than to Nebraska or even to California. Worse comes to worse, dad can put me in car and we can drive there. It might take like 12 hours to get there, but we would never be able to drive to the other hospitals. In addition, whereas if there was an emergency I would have to be heliported to Hopkins of there was an emergency because Nebraska and California are too far, I probably could be heliported to Cleveland because it is much closer.
So… hopefully Cleveland will work out for me. I sent over my records and I am waiting to hear back. They said they are going to work over the “financial” information and when that is all done, they will contact me for an appointment. Hopefully it won’t be too long because time is of the essence and I am rapidly deteriorating.
I know I am getting worse because not only am I feeling worse and seeing myself get worse, but my cat won’t leave my side at all. My cat, Missy, is really unbelievable because she is like my “babysitter.” She will literally stay by my side whenever I am sicker than usual and nowadays, she won’t leave it at all. She will follow me to the bathroom, even though she is only going to follow me back to bed. If I am in a different room than she is and she hears me stirring, she will literally come running because she doesn’t want me to be alone. I have nicknamed her “twinkle toes.”
I am really scared of what is going to happen to me. I can barely get off the couch anymore and I am just so weak. Even my brother has noticed the big change in me and has said, “I miss the old Fallon. I miss you walking around.” Even though I was sick before, I was able to conceal it and push onward. I was able to “not give in” and able to still do things even though I was greatly limited. However, it is basically impossible nowadays to do anything. I literally just lay around all day and can’t move a muscle.
This disease is really taking everything from me. Not only is it making me feel really bad and wiping me out, but it is also deteriorating me physically and emotionally. It is making me look so ugly that I literally hate looking into the mirror. I can’t believe what this disease has made me turn into. I look worse than “death.” If I go outside… I have to put on loads of makeup in order to look “not scary!” Thank goodness it is the wintertime so that I am able to wear “bulky” clothing. At least that makes me not look as bad as I really am. I am like a walking skeleton, as my legs are skinnier than toothpicks. I don’t like to smile anymore because my mouth and teeth is worse than a Jack O’Lantern. I have no tone or muscle left in me and my skin just sags on my bone. Therefore I have wrinkles and everything on me because there is nothing to hold the skin up. It is so embarrassing. When I take pictures, I literally have learned how to airbrush them before I show or post any of them. So… when you see these pictures, don’t be fooled by the appearance. I cry all the time because I hate the way I look. This disease has turned me into looking like a monster. It used to be that it only made me look like a “freak” because I changed colors. Now it has made me look horrible and like a monster! My parents try to make me feel better by saying that I “don’t look so bad,” but they are my parents and they are supposed to say that! It is bad enough that I am “sick,” but I wish I didn’t have to look so bad. This disease really robbed me of so much.
Dad says that the reason that I am suffering so much is because I am being “tested” for something. He said that when I die, I am going to be something big! He said that perhaps I am being tested to be the “head angel” or something. I know that this probably isn’t true, but dad is doing anything and everything to keep my spirits up and to keep me going. Dad doesn’t want anything to happen to me. We all know that if something happened to me, he would NEVER survive. He already bribes me that he won’t take his medicines or that I won’t even recognize him when he comes up to heaven with me if I should die before him because he isn’t going to take care of himself. He acts like I have “control” over the situation. Even though he knows how much I am suffering and doesn’t really want me to suffer, he doesn’t want me to “leave” and such. He knows that he is being “selfish,” but he doesn’t want to lose me. I can’t blame him because no parent wants to lose a child, but I just don’t know how much more I can take. I do know that I continue on so much because of him. I am so worried about him because I know that he wouldn’t be able to survive without me. He is a big reason why I continue onward.
Did you ever hear the song I WAS HERE from Beyoncé? That is my favorite song. If you ever heard the song and listened carefully to the lyrics, you would see why I love that song so much. I feel like it really describes my life. This song makes me think of how valuable life is. This song talks about how Beyoncé has achieved all she ever dreamt of and it was fortunately more than she thought it would be. It also talks bout her leaving her footprints in the sand of time and making a positive impact in people’s lives. It makes me think of the impact I really want to make in the world and how I am not really done here. It makes me want to live even more because it made me realize that I am not done with all that I set out to do. There is just so much more that I want to do. I want to get married and have a family, to become a doctor, to enjoy life, etc. I want to do so many things that this horrible disease has robbed me of. It is so unfair what this disease has done to me. As the song says,
“I want to leave my footprints on the sands of time;
Know there was something that meant something that I left behind…
When I leave this world, I’ll leave no regrets,
Leave something to remember, so they won’t forget…
I was here;
I lived, I loved – I was here…
I did… I’ve done everything that I wanted, and it was more than I thought it would be;
I will leave my mark so everyone will know – I was here….
I want to say I lived each day until I die,
and know that I meant something in somebody’s life…
The hearts that I touched will be the proof that I leave
That I made a difference, and this world will see…”
With the holidays coming this month, me deteriorating so fast, and me leaving or Nebraska, I am probably going to give my gifts to my family before we leave for Nebraska on Monday. I can’t wait to give them the gifts because I don’t want to wait … just in case something should happen. All the gifts should be arriving by Friday or Saturday… just in time before we leave. So… I am seriously thinking about giving it to them before I leave so I know that they have them. I would tell you now what I got them, but I am afraid that it would get out and they would see it. When I do give it to them, I will definitely tell you what I got them. I wanted to make these holidays really special because the doctors already said that this would probably be my last holidays unless a miracle happens.
With the holidays coming, I am also hoping that a “miracle” will happen this month. I desperately need treatment, and money is getting harder and harder to come by. All I am asking is for help from others, whether it is through donating, spreading the word that HELP is needed, or by even saying a simple prayer for me!
It just stinks that getting better depends not only on me but in the hands of everyone else because getting better depends also on money… something I don’t have!! I always wonder what the world would be like if money didn’t exist. I think everyone would be better because it seems like it is the evil to everyone!! Remember that book we once read where the girl had cancer and she built cranes because she believed that if she reached a certain amount of cranes, she would be “cured?” I am hoping to achieve the same thing but with prayers. Prayers are very powerful and the best part about them is that they are “free!”
Well.. gonna get going. I have bloods in the morning. I am really afraid because I have a feeling they fell even more because of all the increase of mucous that has been occurring. I just hope that I don’t end up in the hospital because my bloods are so very low already. I know how easily my heart can have an arrhythmia or cardiac arrest, so I am hoping that they haven’t dropped even more.
Well… until next time…