What is going on? Just thought that I would touch base a little because not feeling well and haven’t written in awhile. So… figured that it might be a good time to write a bit because things have been happening and with everything that is going on… I also want to inform you on all that is happening in case something should happen.
Things are getting worse and worse. My body is getting worse and I am getting weaker and weaker. Not only am I feeling it in my body, but I am sure you might be able to see it in my writing. I used to be able to blog all the time. Now, it is at the point where it takes so much energy out of me that I can’t do all the blogging that I once used to do. So, I want to apologize ahead of time for not keeping you so up-to-date on all that has been happening. It is just as I said… been really hard for me to do so.
Time is definitely running out. I know it, the doctors know it, my parents know it, etc. However, I am still at home wasting away. I really need to get back to California ASAP because they are really the ONLY ones who can really help me. However, due to expenses and such, we cannot afford it at the current time. I have tried (as you know) different ways to raise money, but they haven’t been all affective. I really hope that something is going to turnaround and turnaround soon because I really need donations and the support of others in order to help me get well. It is so not fair that my life is in so much jeopardy even more so because of the money issue. It is amazing how much everything in this world revolves around money. I only wonder what it would be like if “money” didn’t exist.
My bloods are continuing to get worse and worse. My heart is literally suffering and the doctors are worried that it is in heart failure. The term “heart failure” makes it sound like the heart is no longer working at all and there’s nothing that can be done. Actually, heart failure means that the heart isn’t pumping as well as it should be. The doctors really want to put me in the hospital, but I really don’t want to go. I know that the best place for me probably is in the hospital, but I don’t want to live my life in the hospital because that is no life to live. When I came out of the hospital in California, it was only within 5 days that things got so bad that they wanted to put me back into the hospital. It has gotten to the point that I barely can live my life outside of the hospital. I know that even if I go to the hospital right now, once I get out… I would only be back to square one again in a few days and then have to return back to the hospital yet again. The doctors even agreed with me that is no way to live my life, but he also said that at least it is “keeping me alive!”
With everything happening though, I did have a talk with one of my doctors and explained to him how I was feeling. I explained to him how I didn’t want to live my life in the hospital and how I was kinda happy living at home even though I was literally hanging on by a thread. I know I am kinda burning the candle on both ends because here is a way to “buy” time and yet I don’t want it…. And yet I am complaining how I want to live and get better, I know… it doesn’t really make sense. But the thing is that I am so tired and everything. I am tired of just waiting and being disappointed. I am tired of suffering. I am tired of just “being a body on earth.” If I am going to be alive, I want to be getting better… I don’t just want to be just stagnant. You know what I mean?
Anyway, I realized this week how much I wanted to enjoy life and not waste my time in a hospital when I am not getting well. It is one thing if I was in a hospital and they were doing something to get me “well.” But, for me to go to a hospital and just to stay there to “buy” time or to hold me there and hope I survive until something else comes along, it just isn’t’ worth it. I know… I am not really making sense, but I just want to get better so badly and if that isn’t possible, I don’t want to waste my life in the interim. I want to enjoy whatever time I do have left in the interim instead of wasting those days in the hospital.
However, after telling the doctor that, my doctor told me that I really had to go to the hospital because he bloods falling are not something to play around with. My heart is really in jeopardy and I can easily have cardiac arrest and an arrhythmias because they are so very low. He said that there are some things you can “play around with,” but the heart and these levels are something that I definitely can’t play with. His answer was that his job is to “entertain me and keep me alive until my next procedure or til the transplant.”
Life is filled with so much joys that I don’t want to miss out on. This weekend, I did some stuff and it made me realize that I wouldn’t be able to do this kind of stuff if I was sitting in the hospital just “waiting.” I haven’t had this much “fun” in the longest time. It was really nice for a change. I only wish that those days could have lasted forever.
This past weekend was the most awesome weekend that I had. Even though I am doing worse than ever and can barely lift up my head and so weak… at least I am still here. I had the most amazing weekend even though I really should have been in the hospital. On Saturday, I had hot chocolate. I know it isn’t much, but for me… it was really amazing. I haven’t had hot chocolate in the longest time. I didn’t have a lot, but the sips that I had… they were just soooo amazingly good. It got right to the spot. It made me realize that if I was in the hospital or if I had the tubes that they wanted to put in… it would never have been possible to have this hot chocolate because I wouldn’t be allowed. When I get the tubes, I won’t be able to eat or drink again. So… it was really nice to be able to do this.
In addition, I got to spend some “family time” with my family. With being so ill and always in the hospital, I never get to do that anymore. My dad and I are always traveling and my mom and brother are always home. I miss them so very much. Anyway… I ended up sitting around the TV and watching the man jump from space. We didn’t just watch the brief 10 minutes that the actual jump occurred, but we watched like the entire thing from the capsule going up. It was not only amazing because I got to see history being made, but I got to be with my family doing this. I wouldn’t have traded it in for anything.
Not only are my heart bloods worse, but so are my white count bloods. Something is definitely brewing. Everything is just deteriorating and getting worse. I can’t believe it. My neutrophils and other bloods are deteriorating and that isn’t good because it makes me very susceptible to infections. Neutrophils, which are produced in the bone marrow and circulate in the blood, are a type of white blood cell. Neutrophils are abundant and make up about 50% to 75% of white blood cells. Neutrophils respond to infection and attack bacteria and other foreign invaders directly. Neutrophils are the first type of immune cell to respond to and arrive at the site of infection, often within an hour.
If I get sick, it can easily kill me because everything is magnified for me. A simple cold for me is like getting the flu for me. So… with flu season around the corner, you can imagine how scared the doctors are because if I get the flu, it will certainly kill me. I have been too weak and sick to get the flu vaccine, so I am still awaiting that.
I went to the stomach doctor today. Since I am in New York, I went to my NY GI doc. Things are getting really bad and I am getting scared. It is at the point where I can’t eat anything that has carbohydrates. I can’t even swallow my pills. I am basically living on egg whites and medicated ice-pops (for my heart). I am not only suffering from mucous coming out below as stool, but I can’t belch up gas anymore either. It is as if I lost the ability to have that reflex. It is really uncomfortable and it just isn’t right. When I told the doctor about this, he too was worried because a normal reaction of the body when you have something lodged in your esophagus or have gas in your stomach is to bring it back up or belch. I can’t do that anymore.
After speaking to my GI doc, even he says, “what am I waiting for?” He insists that I really have to move because I am running out of time. However, of course I am still waiting to hear where I am going because even though California is the BEST place for me, the insurance company will only cover the operation there if Indiana and Nebraska can’t do it. But even with the insurance coverage, the amount I will need to pay (no matter where I have it) will be astronomical and therefore, I will still need to raise plenty of money before I can even have it. I have to worry about traveling expenses, living expenses because I will have to stay there for a while, medication, deductibles, appointments, money for doctors, etc. Nothing is free in life. Plus, I will also have to worry about my anti-rejection meds afterwards because you can’t live without them and they are not covered by my insurance plan. That will cost me $1000 a month easy for that alone… not including my other expenses for my other meds. I don’t know how I am going to afford all this.
I am waiting on edge to find out where I am headed. Even though I am having to go back to Cali buy me time, I really need to go to Indiana and Nebraska to be evaluated. It really stinks because that is even more money that I have to spend… money that I don’t have. It is also time that is wasted… time that I am running out of, as well and time that I don’t have.
Nebraska really can’t do the operation on me because they don’t do multi-organ visceral transplants. I need a new pancreas, small intestine, large intestine, stomach, and possibly a new esophagus. However, the doctors were thinking about having me as a “guinea pig” and being the first one to undergo a multi-organ visceral transplant there. I don’t know really about that to be honest with you because it is so risky this operation. This transplant has the highest complication rate of all transplants and also has the highest rejection rate of all transplants as well. Therefore, I don’t know if I really want to be the FIRST.
Indiana does do multi-organ visceral transplants, but they have only been doing them starting January. Granted that these transplants are very rare and only done like once or twice a year in each hospital, I don’t know if I really want to have it done there either because it is still like being a “guinea pig” because hey really just started.
The ideal place for me would be California because they have everything there for me… my entire team. They are able to handle not only the transplant that I need, but they can handle my underlying neurological disease as well, which is very important. Even when I had the tubes placed into me when I went to Cali last time, the underlying neurological disease really acted up and they had to deal with it. Any sense of trauma can stir it up and worsen it… and surgery is the biggest trauma there is… especially this kind of surgery. Without them intervening when they did, I probably wouldn’t be walking right now because when I went for the operation for the tubes in California the last time, I was unable to walk or even stand afterwards. My underlying neurological disease is spreading like a wildflower as it is and they have to be very careful with it because once it spreads and worsens, it is difficult to get it under control. Luckily the team in California was able to intervene and put me into an emergency ketamine coma in the ICU and was able to get me to be able to stand again and such. I was so nervous. I thought that it was the end.
All these different places have different protocols as well. If I go to Nebraska, I will most likely be able to live at home until I receive the call that I get the organs. Then I would need a private plane to take me to Nebraska because that would be the only thing that they would allow. Indiana on the other hand would not allow me to remain at home and wait. They want me in the vicinity of 4 hours. So, it really will be costly either way because it will cost to either move or just to have a private plane to fly me. But… the first thing is to go there and finish getting evaluated.
In the meantime though, I am really deteriorating. When I went to the GI doc today in New York, he wants to put me on TPN. Since I was unable to tolerate the tubes in me when I went to California, they are thinking about TPN even though it really is dangerous because it can lead to a significant infection and stir up my neurological disease as well. If I do get an infection, it would really be dangerous for me because I wouldn’t be able to overcome it most likely. TPN requires a chronic IV access for the solution to run through, and the most common complication is infection of this catheter. Infection is a common cause of death in these patients, with a mortality rate of approximately 15% per infection, and death usually results from septic shock.
California wanted to try to avoid this as much as possible and therefore, they wanted to try to put me into a coma for like 3 weeks and put tubes in me that way. This way they would “feed” me and such as if I was totally “dead” and my body wouldn’t be able to really do anything because it would be in a “coma.”
But, of course even if the California doctors do the coma, it will only be temporary. It will feed me and give me nourishment, but it will only be temporary. With my weight and bloods falling so low, something needs to be done because I am going to die soon. If I was a male, I would definitely be dead because males can’t live below 13. Luckily, females can live until they reach 12 and I am about 12.2, so I am hanging on my a thread. Of course we don’t have any wiggle room though.
Total Parenteral Nutrition is also called TPN. It provides nutrition such as protein, sugar, vitamins, minerals, and sometimes fat (lipids). TPN is used when you are unable to eat or cannot get enough nutrition from the foods you eat. TPN always goes into your vein (blood vessel) through an intravenous (IV) line. OF course that means that I will need another surgery to put a port into me. A mechanical pump under computer control is used to dispense the TPN fluid.
There are so many complications from TPN and if I end up on that, I can only be on that for the most about 3 months. So… time is really of the essence to have another plan in place. Chronic IV access leaves a foreign body in the vascular system, and blood clots on this IV line are common. Death can result from a clot that starts on the IV line but breaks off and goes into the lungs. Also, TPN increases the risk of acute cholecystitis due to complete disuse of gastrointestinal tract, which may result in bile stasis in the gallbladder.
In addition, my teeth aren’t doing too well either. My biggest fears with my teeth are starting to come true. I always have been self-conscious with my teeth, as they look like a Jack O’Lantern. I have always been self conscious on smiling because my teeth are deteriorating and separating and therefore, there are major gaps in between my teeth. I always had the fear that I would end up losing my teeth. Well guess what?? It looks like that is going to start to happen.
Due to my stomach issues and the acid eroding my teeth, one of my teeth looks like it is going to have to be removed. It looks like it is going to be the start of my biggest fear. In the past, the dentist was able to bond all the erosions and such. However, it has gotten to the point where this isn’t possible anymore. Even though the dentist is still going to try one more time to save the tooth, he doesn’t think that it is going to be possible. It appears that one tooth has too much erosion and even has erosion right on the actual nerve. The gums are deteriorating and disappearing so much that they are all exposed. With the erosion right on the nerves, it only complicates things further.
I know that there are dentures that you can get to replace teeth that were once there, but I don’t want to have to have them. After all, I am only 30 years old. They are also so uncomfortable and disgusting. I don’t want to even think about having to wear dentures or having teeth that you have to take out of your mouth and such. I know that there are implants that you can get also, but I know how expensive those are and I know that I would NEVER be able to afford those… so those are probably definitely out of the question.
I told my dad that my entire body is being taken from me. My dad said that at least I have my “head” still. I told him that if they had a way of taking that too, they probably would. I can’t believe how they are decapitating me. It is like I am not even a person anymore. Everything that I came into the world with is being taken from me… my organs, teeth, etc. It is so unfair.
O… wanna hear something so touching? I never was so touched in my life before. Someone I know told me that they had it marked on their license when they went to the DMV to have their organs donated so that if they went before I did… then possibly I could have them. Even if I am not a match or don’t get them… just the offer of this and the possibility is amazing. I can’t believe that someone would do something like that for me. Some people are just amazing and one-of-a-kind. When this person told me what she did, I literally started to cry because I was so touched. No one has ever done something like this for me before. I don’t knowhow I can ever say THANK YOU to someone like this. What an amazing person!!
Well… that takes care of all that is happening in the health area. We are just living day to day in the meantime. We never know if I am going to wake up in the morning or not. Dad just keeps walking around the house saying, “You should be in the hospital.” Dad is just so very afraid that something is going to happen to me.
Mom and dad’s anniversary is this coming Friday. They will be married 37 years. I ended up saving up and buying them a flat-screen TV because they really needed it. It was the best gift that they could have gotten. I never saw my dad so thrilled. I know that I shouldn’t have spent the money because I needed it for myself, but after all my parents have done for me… it was the least that I could do. I knew how desperately they needed a television and if I didn’t go and get it, they wouldn’t have gotten it themselves.
The old TV that we had was a DINOSAUR and barely worked. I also got it because of the money issue. If nothing else, I have really become money savvy since I got sick. The old TVs that were “tube” TVs really cost a lot of money to run and I thought if nothing else… it would save a lot of money on my parents’ electric bill. I was watching a program and they said that when people retire, the cost of the electric bill goes way up if they have a “tube” TV because of the cost to run it. The cost to run these new TVs are basically next to nothing and therefore, it should cut the electric bill significantly. I actually can’t wait to get the monthly electric bill and see how much it really did cut it down.
It was really time for a new TV because the old TV was 30 years old and literally had to be taken out of the house using a pushcart and dolly because it was so heavy. At least now when they watch TV, they can always think of me. I never saw my dad so excited. He wanted to hang the TV on the wall and make it like a movie theater. He was like a little kid. He has been so busy with the TV and so excited with it. All he does is keep blaring the television sound because he can’t believe how good it sounds. It sounds so realistic and it looks so realistic too. It is like we are actually there. Big difference from that dinosaur that we had as a TV. I am so glad that they really liked it because they really deserved it after all they have done for me
As of now, I really need to get back to California ASAP. Even though the doctors really want me there already, I can’t afford it at the current moment. The doctors want me for surgery on November 10th, but that would mean that I would be there for Thanksgiving. I don’t really want to be there for Thanksgiving because I have a feeling this could be my very last thanksgiving and I wanna spend it with my family at home. I am hoping to go back to California right after Thanksgiving, but the doctors and my family and everyone else don’t think I will make it that long. They are probably right, but I am hoping that I can.
I am trying to hang in there as long as possible, but it is getting harder and harder. I taught my dog how to slap five and posted it on YouTube. You can check it out at http://youtu.be/Z0tX_-g5zHs and http://youtu.be/A-3KDIzoMIs These are two different videos. Just a little something we were working on. In fact, after I got my dog to do it, my parents came home and kept trying to get my dog to do it as well. Of course no one could do it as good as me.
As things are continuing to worsen, I need the help of everyone that can be wiling to help me. If you can say a prayer, spread the word that I need help and donations… I would really appreciate it. My life is really hanging on by a thread and I would appreciate any help that you can give. I hope I am not asking a lot, but even a simple prayer would be much appreciative. Thanks again though for your continued support and encouragement.
I will talk to you soon.