Well… I am writing to let you know the latest, as so much has happened since I have gotten home already and I promised to keep you all updated. A lot has been happening, but since it all really hit the “roof” today… it is all fresh and still settling in and I am still so overwhelmed by it. My head is still spinning from everything that has happened today. I am really not feeling well, and therefore, I don’t know how long this post will be. I will try to tell you as much as possible, but I might have to continue at a later time.
I can’t believe all that is happening. I just got home from California and I am already heading back there. It is like my “home away from home!” Then again… it will be my “home” when I go for the transplant because I will be there for about 3 months or so. I don’t know how on earth I am going to manage that. I don’t know how we are going to afford that and I don’t know how on earth dad is going to be able to take that much time away from the business to be with me because if he isn’t there to work, the business will crumble. Without him working, there is no work going out and therefore, no income is being made. When my dad takes me to California for just even that one week, it really hits hard to my dad. I don’t know how on earth he is going to manage to be away for 3 months.
We really have to start making decisions because we have to get back to California ASAP. I am really not feeling well and I am literally on “borrowed time!” I never thought that things could get so bad to be honest with you. I knew that I would have to return to back to California for surgery in 3 weeks, but I didn’t think that it would come down to being so URGENT and that I would be in such a mega crisis. I never thought that my life was going to take such a downturn so fast and I didn’t think that my life was going to be at stake like it is. I have always been walking a “tight” rope, but right now it is about to snap. I really need to find a way to get back to California fast because time is of the essence. My life is literally at stake. We don’t even know if I have 3 weeks to spare, but we are hoping I will make it.
I haven’t been feeling well, but honestly… that isn’t anything new. I am always not feeling well. But when I was in California the last time, I started to feel worse and different. I started to have severe stomach pains and I was also having a very difficult time swallowing, especially when I ate. I always had this problem, but it was nothing like this. I thought it was really “nothing,” as I thought it might have been the food that was there. I thought perhaps I just couldn’t stand the taste of their food or coffee or something. But, apparently it was not that because when I got home it didn’t stop.
When I got home, it just continued to get worse. I was back to eating my regular stuff, so therefore I knew it couldn’t be about eating the “wrong” stuff that was making me sick. Not only that, but as the days continued to progress, the difficulty swallowing and my stomachache continued to worsen. It has only been a few days that I have been home and yet, there has been a significant difference in just these few days. I can’t believe how much it could worsen in this short amount of time. I literally can’t swallow anything… pills, liquid, ice cream, eggs, etc. … you name it!! No matter how soft and how easy it was to go down before, I just can’t swallow it now. It feels like my swallowing function just doesn’t work. I can’t really eat or swallow anything anymore. My stomach is all distended and feels like there’s holes and obstructions and blockages. I am so uncomfortable and in so much pain. I am also suffering with lots of blood and mucous coming from the bottom half.
My stomach not only hurts, but it is very distended. I have severe gas pains and it goes beyond just being in my tummy. It extends to even below my tummy and into my lower abdomen, which is into my intestines. It is as if I want to take a pin and just “pop” me.
Being all filled up with air the way I am and distended kinda makes me worried too because I am supposed to have surgery when I return to California to see if there is any viable parts of the small intestine left. They are pretty much sure that they aren’t going to find anything since my entire GI system is basically gone (my stomach, small intestine, large intestine, etc. are all paralyzed), but they are hoping that perhaps if they go low enough into the intestines… they might be able to find a viable portion. Therefore, they are putting a tube in me that will pass through my nose, down my esophagus, through my stomach (that will bypass it) and into my small intestine that will go into the bottom portion of it to see if there is any viable portion. They will try to tube feed me into the very end of my small intestines and see if my body will accept any food whatsoever.
The doctors insist that I have less than a 20% chance of this working, but they are willing to try it because at this point, we are really desperate. I am basically on borderline death, as my BMI is so very low. I am so very lucky to be a female too because if I was a male, I would be dead already since a male cannot last below a BMI of 13 under any circumstances. Fortunately, a female can last down to a BMI of 12 and therefore, I am still able to survive. I am surviving, but barely because my BMI is like 12.2 at the current moment. Therefore, I am literally knocking on “death’s door.” Plus, they want to give me tube feedings because they want to make me stronger for the transplant as well because the transplant is so very risky and dangerous, and I will need as much weight and nourishment to recover.
If I am able to accept the food, they will then do surgery and permanently place the tube in my abdomen and it will come out of there instead of my nose. But, they have to make sure that I “accept” the tube first and that I don’t form a ‘bag’ there because my intestines are dead and there is no place for the stuff to go. If I do get the tube, I won’t ever eat ever again. This kinda bothers me because I will always be “hungry.” Feeling “full” is not just about taking in food and feeding yourself. You get the “full” sensation because you feel it in your stomach and you put it in your mouth. Since I won’t be able to do that anymore, I will always have a rumbling stomach. I don’t now how I would be able to manage that because I am sure that will be very bothersome. Plus… I am worried because I don’t know how I will feel “Watching” everyone in the world eat and I can’t. Wouldn’t other people feel funny going out with me and having me just “watch” them? Well, I guess I will just cross that bridge when I come to it. First thing is to see if I can tolerate the tube. I might not even have to worry about that part because who knows if I can even tolerate it. I have less than a 20% chance. So… lets first see what happens.
However, I am really scared because due to all this distension in my stomach and how it is hurting me, I really don’t think that they are going to find any viable part. My intestines are all distended and it isn’t looking really good. I have a really bad feeling about this and this procedure. It really doesn’t look so promising with the way that I am feeling and the way that my stomach and intestines are looking at the current moment.
Anyway, since things have gotten so bad, I did call the doctor in California to let him know what was going on. I wasn’t expecting to hear the news that he gave me. Even though I knew that I wasn’t feeling well, I didn’t realize how bad things have gotten and I didn’t realize that I was really in a state of “emergency,” and even more so than before.
Anyway… when I spoke to the doctor in California today, I explained everything to him. Dr. Winter is one of the nicest doctors I have and he is so intelligent. He set up so many programs in Africa and I think if anyone can get me “better” or help me… it is him. I have the most amazing doctors in California. They always call you back and what a relief that is because when you are sick, you always want an answer.
I am not doing good at all and when I spoke to Dr. Winter, I was not expecting to hear what he told me. I wasn’t expecting to hear that I was really in such an “emergency” or in a “crisis.” But, Dr. Winter told me that he wanted me hospitalized ASAP because I could die realistically any time. Dr. Winter does not like what’s going on AT ALL. He told me that when he saw me that he was “very scared for my life” and now he is even “More so!”
Dr. Winter wants me to get to California as soon as possible and be hospitalized so that I can have a lot of procedures and surgeries performed. He is very worried about the swallowing, the stomach pains, and the distension. He is also so very worried because I am bleeding from down below and having a lot of mucous pass too. He told me that he wants to get to the bottom of what is going on because it can easily kill me anytime. We don’t have time to play with anymore. Dr. Winter was also very concerned with what was happening with the transplant team as well, as that most likely will be the only thing that will save my life. Even though he is my doctor, the transplant team is another team that works jointly with him. The doctor is really concerned about the transplant and what’s happening with that process because apparently I need it more than ever. I’m literally REALLY RUNNING OUT OF TIME QUICKLY!!!
However, even though I have all this going on, Dr. Winter wants me in the hospital when he is the attending doctor on the inpatient ward so that he can be in charge of my case. I am an extremely complicated case and he doesn’t want just any doctor in charge of me. We thought about at one time “tag” teaming, which means that another doctor would take care of me, but he wants to be the one since I am so very ill and knows me best and is supposed to be the BEST doc as well. However, he won’t be in the hospital until September 16th, and therefore, he wants me to in the hospital then.
I am so very scared. I know that it is very bad and I know that this is worse than it has ever been. I know that it is definitely something to worry about and I know that we are really in “crisis” mode because of what he said to me when I asked him, “Am I going to be ok? I’m not doing too well… Am I? I’m going to die, aren’t I?” When I asked him those questions, Dr. Winter responded by saying, “Things don’t look too good. No you are not doing good at all. You gotta get here!”
I also know things are bad because when I tried today after receiving this bad news to make jokes with doc and laugh it off… No one was in a joking matter anymore. Even when I went to my appointments in California when I was there, I was still able to “joke” around with them. However, no one was laughing or wanting to ‘joke’ around anymore.
I also know things are bad for one other reason. Dr. Winter didn’t really want me on any more medications for pain when I went to see him in California. However, when I spoke to him today, he was wanted to give me more stuff to make me more ‘comfortable.’ If things weren’t so bad, why would he all of a sudden want to give me pain meds when he was so against it before? You know?
Dr. Winter wants me to come September 16th or September 23rd. He gave me those 2 weeks to play with. I will be hospitalized for at least a week and during that time I will have numerous and various procedures. Some procedures and surgeries that I will have include the tube surgery, the procedure where I will be given snake venom, etc. They want to see if they can help my underlying neurological disease by giving me snail venom. They pioneered it and even though it is preferred to go in a pump, I am too small to have one. Therefore, they are just going to insert the venom into my spine and hopefully it will still do something. So much will be happening during that time and thankfully, Dr. Winter will coordinate everything. That is another great thing about my California doctors. They are fantastic in coordinating things. They make sure that everything is coordinating and they make sure that they always talk to each other. It is a real “team” approach. I really can’t ask for better doctors.
The doctors in California are really so very caring. I couldn’t believe that Dr. Winter told me that he wanted me to discuss everything with my family about when I was going to come back and all the plans, and then he will call me tomorrow to finalize everything. At first he told me that I can call him tomorrow and let him know, but then he said that he will call me just to make sure that we end up talking. We are going to have a little meeting to get everything situated!” That’s some doc to make sure that he calls and such. You know?? He’s organizing everything including all the hospital admissions, surgeries, snake venom, etc. He really is taking everything off of our shoulders and making it as easy as possible on us. It really is a big help.
Even though the doctor really wants me September 16th, I think we might have to put it off til the 23rd even though my life is really at risk. I really have no other choice because there is really no money to go on. We just came back from California, which cost a lot of money. We really had no time to rejuvenate. Plus, my dad has to catch up on some of his work. When he misses out on a week of work, it really takes a toll because he “backs” up. When the work doesn’t go out, it is lost income. When we go to California for a week, my dad not only has to do his regular work before we leave, but he has to do his extra work so that he can make up the work that he will be missing when we are gone. So… my dad still has to get back on his feet from the last trip. We can’t just pick up and leave so fast. You know?
I know we don’t have a lot of money and I sometimes wonder if it isn’t just better if we just leave things the way they are and let me just be the way that I am. In this way, my family will no longer suffer because I know how very hard it is for my family with me being sick. My family has given up so very much for me and I can never thank them enough. However, I don’t want them to lose the business or house because of me. It just isn’t fair to them. I have been a burden to them enough. They don’t deserve this.
Of course my dad won’t hear any of this. My dad wants to get me any help that is out there. Even though it is going to really be a hardship to go back to California, especially so soon, my father says “we really have no choice.” My dad is like “what r u going to do? It’s our only option. The only other option is death!” that’s the last thing my dad wants and if I should even hint at the word or mention giving up or anything… OFF WITH MY HEAD!! I can’t blame him for being that way because no parent wants to lose their child, but I have caused enough problems for them. I really don’t want to be a bother to them anymore. It isn’t fair to them.
Another reason that I need to postpone the trip to California is because I have an appointment with my pain doctors in New York that cannot be rescheduled and I cannot miss them. I already missed them for the past 2 months because of the trips to California and there is no way that the doctor is going to allow me to miss another month and still give me my drugs. After all, we aren’t talking about “everyday” drugs that I am taking. I am on very potent medications including methadone, morphine, nucynta, etc. The doctor can’t just call the pharmacist either and renew the prescription because the pharmacist needs to have the actual prescription on hand. Therefore, it is imperative that I keep the appointment because I need these medications. I have been fortunate for the past 2 months that he mailed me my prescriptions without me seeing him, but he was barely going to do it the last time. No way is he going to do another month. So, even though my life is basically at stake, I have no other choice because I need these drugs and have no other way of getting them.
Well… that appears to be everything that is going on. As you can see… everything is chaotic right now. I don’t know what is going to happen. I guess I am just going to have to take each day one day at a time and hope for the “best.”
The doctors already told me that I better “not get stressed out.” I can no longer convert energy and oxygen into my cells and organs. Therefore, whenever I use up all the oxygen and energy that I have… that is it. I can’t rejuvenate like a normal person or like I used to. I easily get exhausted and therefore even talking can make me tire easily. So… I really have to be careful not to exert any extra energy on “stupid” and unnecessary things because I don’t have that much oxygen and energy on hand as it is. I need to save all that for trying to keep myself alive.
I am really scared because I know that I am not doing too well. I can feel my body giving out. It is the “weirdest” thing. My body is literally shutting down and I can feel it. It is so hard to explain and unless you are physically going through it, you probably wouldn’t understand it. I keep having these “out of body” experiences and weird sensations and everything. They are really freaky and everything. But… despite everything… I still try to keep a positive attitude.
We are still trying to debate what to do about the transplant too. Even though I do love my doctors in California, we don’t know if that is the best place to have the transplant. The transplant doctors said that there are like only few hospitals that they would have the transplant at. They are Stanford, Nebraska, Indiana, and Georgetown. I really like California, but they only do like 1-2 a year and only have a 85% survival rate after 1 year. Nebraska is the biggest center, but they have a 92% survival rate after 1 year. Like my dad said… it is all in the numbers. I also know that if I have it done in California, I would probably get the organs within 2 weeks because I am so ill and where I would fall out on the transplant list. If I went someplace else, we don’t know how long it would be. So… there are so many factors to think of and a lot of decisions still need to be made. We better start moving because the process is in the “works.”
Thanks so much for everything that everyone has done for me. I wouldn’t be here today if it wasn’t for the encouragement and support that I have been given by everyone. I really get my strength from you.
However, as you can see, we are really having a hard time with my disease. It is a real financial burden to my family. I am really deteriorating and it is a shame how money is such a crucial factor in this whole entire process of living. It really could basically “make” me or “break” me because without money, I can’t receive the treatment that would help me live. Without the treatment, I will surely die. I hate to be a “crier” because I never was one before. It really hurts knowing that I have to “ask” and literally “beg” for money. However, my life is at stake and without money… I can’t receive the treatment that can potentially save my life. Therefore, I am hoping and asking if you can help me out in any way possible… whether it is by donating, spreading the word and bringing attention to my cause and website, saying a prayer, etc. Any help that you can do would be much appreciated. If you have any fundraising idea, it would be much appreciated.
Thanks again for all your help. I can’t thank you enough.