How are you? Well… today was my last day in California, as I am scheduled to be coming home tomorrow. I can’t wait because it has been a LONG week here in California. I miss my mom, as it has been my dad who has been traveling with me. I have seen countless amount of doctors and have had countless amount of tests. I have literally been in the hospital all day long every single day. I think if I see the inside of another hospital soon, it will be way too soon. However, I do have to return to California as soon as possible, as my life depends on it. Therefore, I guess I will be seeing the inside of a hospital sooner then I think because they want me to come back like in 3 weeks to get more stuff done.
However, I guess I should just finish up with this trip first and take care of everything that goes along with this trip before worrying about the next one. I really want to tell you what happened today because today was the BIG day, as today was the day that kind of determined my life. I had the meeting with the TRANSPLANT team and therefore, it was “decision” time. It was the time when they were going to decide if I was going to be granted the transplant or not. Even though I so desperately needed the transplant to survive, we didn’t know if I would be given the transplant for two reasons.
First of all, my health is so bad and I weigh literally nothing. We didn’t know if I would be able sustain an operation and we didn’t know if any surgeon would be willing to take the “chance” on me of operating. I am extremely unstable and they don’t know if I would be able to survive an operation. So, not many surgeons are willing to give me an operation or do anything on me in the first place even though I may desperately need something… even if it means saving my life!!
Second of all, I am on so many medications. I not only suffer from a failed GI system that leaves my entire GI system (esophagus, stomach, small intestine, large intestine, etc.) dead, but I suffer from other ailments such as severe autonomic dysfunction and a severe underlying neurological disease that is extremely painful. Therefore, I am on so many medications. I take over 50 pills a day and I am on so many injections as well. We didn’t know if they would give me the transplant because the medications that I am on compound the reason why my GI system has failed me. Even though my GI system has “died” because of the Gastroparesis and other diseases, the medications that I have to take doesn’t help things either. In fact, the meds that I take (especially the narcotics), happen to be the worst for my GI system and therefore, they will contribute to killing my GI system as well. They only compound the problem. Therefore, we didn’t know if they were going to waste giving organs to me because it is very possible that the new organs can be affected too because of the medications that I am on. However, like I said before, I will definitely die without this transplant and therefore I understand the reasoning that they wouldn’t want to give me organs that might be ruined again because of the meds, but I also understand that this is my only chance of living and therefore I want to live. You know?
I am so used to getting BAD news that I didn’t honestly know what to expect. In fact, one of my doctors on my team here even said that when they were reading through my records, they felt bad for me because they see how badly that I am sick and every time a doctor wanted to do something for me that could help me, they couldn’t do it because an obstacle stood in there way. They said that they felt so “sorry” for me and everything. But, that is just the story of my life, so I was kinda thinking that this was going to be the same thing. I thought that when I went to the transplant doctor today, I was also going to get the same unfortunate news. I thought I was going to get my “death” sentence because like the doctor said to me “every time there is something to do, another obstacle stands in my way that prevents me from getting it.”
I knew how badly I needed this transplant too because I am basically knocking on death’s door. The doctors have already said that I am “lucky to be a female because if I was a male, I would easily be dead.” A male cannot live below a BMI of 13. There just is no way. However, a female has a little more wiggle room, as she can live down to a 12. So, since that is the case, I am able to survive a little longer, as my BMI is like a 12.6. However, I am literally borderline death and therefore, I don’t have room to drop anymore. I literally weigh in the 60s and if I drop anymore, I will literally die. I am desperately running out of time and I don’t have that much time left. As the doctors said to me, “it is amazing how I am alive, and we don’t honestly know how you are still living. Yet you must be doing something miraculously right because you are still alive.” They told me also that even though I am still “living” all I need is one extra stress or something like that to my body, and I will easily die. They said in the state that I am in right now, “I can’t afford any stress whatsoever because I have no reserve whatsoever to handle it.” So… it is important to get help quickly because I can easily die. I am knocking on death’s door, as it can happen according to doctor’s “any day!”
But guess what? I guess I should stop beating around the bush and tell you how it went today at the transplant doctor. When I went to the transplant team, they said that they would GIVE me the transplant. However, it is extremely risky and dangerous. One big problem that we have is that it might not be done here in California. There are only 8 hospitals in the country that do this transplant. However, even though this hospital does do it, it depends on the insurance and stuff. It could very well be done in Nebraska, Indiana, or Georgetown. They do it also in Pittsburgh, but after meeting with the surgeons here, they told me that I shouldn’t have it done there because the hospital and transplant team isn’t good there. This transplant is very dangerous, radical, and risky and therefore, I can’t just have it done anywhere.
Although I would really prefer to have it done here in California, my dad and I were really thinking about it and don’t know honestly if that is the BEST thing. The biggest center is Nebraska and maybe even though we do love the doctors in California, maybe the best place for me to go is there because that would be the best place for me. We will be “Eskimos” in Nebraska because it will be so very cold there. We did some research and found out that if we go to Nebraska, they get like 20-40 inches of snow between the months of January and February and the temperature gets so very cold. I hate the cold. My dad said to me that I would be ok because I would be in the hospital; it is him that would have to worry about it because he wouldn’t be staying in the hospital.
I really need to go where the best place is for me. But I don’t know where that would be. If I have it done in California, I might be better in the sense that I would get the transplant in about a week or two. I am so very sick and if I have it done in this center, I probably would get it in that time frame. However, they only do 1-2 a year and they have 85% survival. Every single one has a complication. 20% have major complications where they have to go back to the or. They sometimes never get to leave the hospital. So we might b better going to Nebraska because it’s a bigger center. I’ll have an ostomy bag for at least 3 months and hopefully after they’ll be able to re-hook me up. They will have tubes coming out of me for a while too. For the first 6 weeks I won’t gain a single pound because all weight and food will go into healing. If I have it at another center, I don’t know how long the wait will be for the organs.
But, the doctors know that I most definitely need the transplant and therefore, they are starting the transplant process since it is a very lengthy process. Even though you can get the organs in a fairly fast amount of time period, the time it takes to do the whole process of the transplant because so much goes into getting it… that does take a while. So, they really want to start getting the “show on the road.” However, they are planning on trying something else while they start the process as well. They are going to try TPN or a central line with lidocaine 24/7 to see if I can tolerate it. They don’t think I will or even if it will be possible. They said that the tube feelings will have less than a 30% chance of working.
When my dad heard that the tubes might have a 30% chance of working, my dad became extremely hopeful that something would work. My dad wants me to live no matter what. It would kill him if something happened to me. He doesn’t realize that 30% is really nothing and the doctors even said “LESS THAN a 30% chance.” But, like the doctors said, “He likes to see the glass ½ full all the time. My dad is just so optimistic. He wants me to do everything there is to live. He is just so hopeful and wanting to try anything and everything. He puts his eggs all in one basket and I don’t want to see him hurt. Sometimes I wonder if he doesn’t “push” me too much and if he just doesn’t push me because he doesn’t want to lose me, not because it is the BEST thing for me. You know? Sometimes I think he is just “selfish” because he loves me so much and doesn’t want to let me go. Sometimes I think he would rather see me “suffer” because he doesn’t want to let me go. I know that if something happens to me, it would kill him and he would never recover.
If the transplant definitely worked… It’s my best option because I’ll b able to eat whatever I basically want. If I go with the TPN or tube… I’ll never put another morsel of food in my mouth again. But the transplant is HIGHLY dangerous and HIGHLY risky. I will not only need a small bowel, but I will need a stomach and pancreas as well. So I will be getting a small intestine, large intestine, stomach, pancreas, etc. The doctors said what’s amazing is that despite everything like how little I weigh and how my organs are failing and how I’m knocking on death’s door… I am NOT malnourished. It’s really amazing and they honestly can’t believe it. So… if the transplant works and I make it through… of course that is the better way to go because I will be able to eat again. However, it is no “walk in the park” by any means. But, at least I will be able to eat again. I can’t imagine never being able to put another morsel of food in my mouth EVER again. My stomach will be so hungry and I will never feel “full.” Being “full” not only comes from having nutrients enter your system, but because you taste food and food enters your mouth and stomach. However, since I won’t have this, I will never feel “full.” My stomach will rumble with hunger all the time, which won’t be pleasant. I also will feel hungry when I smell food too and will feel “weird” around food when I go out to restaurants and such. The doctors said there are “tricks” around this such as putting mint Vaseline under your nose to not smell it, but still… I still want to be able to eat.
If I have the transplant… We don’t even know how we are going to manage to do it because my dad has the business and money is so tight. We will have to stay here roughly 70 days…maybe more. Even now, I need to come back in 3 weeks and I don’t even know how we are going to accomplish that. They say I’m in really bad shape and wanna move on this ASAP.
What is good though is that when I return in 3 weeks, they want to do a lot a one time. I am in such bad shape that they don’t want to “wait” on things anymore and want to do as much as possible as quick as possible. Usually they do one thing at a time but they wanna do a lot with me. Firstly, I need a psych consult in order to get clearance to have anything done. They want me to have the psych consult one day because they can’t really do that when I’m admitted. Then, that clears me to have the snail venom and ketamine. This way I would go into the hospital right afterwards, which would be later that night or the following day, and they would not only do the “tube,” but the snail venom and/or ketamine. So this way they do a lot of stuff at one time instead of waiting. Of course they are hoping to do this all… But who knows if it will happen. We don’t know if we can afford it.
We have no idea how we r going to even make it back here in 3 weeks. We r soooo financially broke that it isn’t even funny. Plus… With dad not working… It really is taking a toll. I hate to be a “crier,” but I desperately need help so badly. Therefore… Dad has to do some working and catch up on all that he missed out on from being in Cali this time. Then, he has to also do additional because when we go out here again, he will miss even more work. I don’t even know how we are going to do this. Dad doesn’t even know how this transplant is going to work out because of how much time is needed to be spent in the hospital and away from the business. Being away from the business means money and customers lost and no income for us. The business will never survive and therefore, we won’t b able to even pay our bills and such. We are so financially in debt that it isn’t even funny. We really need a miracle. If something happened to my dad’s business or to my family because of me, I would never forgive myself.
Sometimes I wonder if the best thing isn’t just to do nothing. This way no one will get hurt because we can’t afford it and my family won’t suffer anymore. I have been a burden on them for so many years already and they have given so much of their lives up already. If they had to give up more, especially their house and my dad’s business… that would be the last thing I would want them to lose. I don’t want them to have to give up or lose out on anything anymore. They have given up so much for me already. It isn’t’ fair to them. Plus, the transplant is extremely risky and dangerous, so maybe the best thing is to just live out whatever time I have left. You know? Maybe I should just enjoy whatever time I have left and enjoy it. I have been suffering for so long so therefore, maybe the best thing is just to enjoy whatever time I have left and move on. At least I won’t have to suffer any more and I won’t have to go through the transplant, which is so very dangerous and there is definitely no guarantee whatsoever that I would even survive. Like I said before, it is no “walk in the park,” as it is so very dangerous and runs the highest rejection rate. I am basically being “gutted.”
Even if I go through with it, the recovery is really intense. Like I said before, everyone has complications from it. 20% even have to go back to the OR because they have MAJOR complications, and some never leave the hospital. I am hoping I will never have that. I will also have an Ostomy bag and I will have tubes coming out of me as well. They will also have to swab the inside of my intestines every single day, twice a day, to make sure that I am not going into “rejection.” They said that if I was going to start “rejecting” the organs, the first one to go would be the small intestines. So… they said they swab it 2 times a day to find out if it is going into rejection. I will be on very heavy anti-rejection meds because of this transplant. It is the transplant that runs the highest rejection rate. I would be on these very high drugs for the rest of my life. Plus, even if I tolerate the transplant and make it trough, there is no guarantee that it will last. I can very easily need the transplant again in 3 years or something.
So… I have a lot to think of. But… in the meantime, I really gotta find a way of raising money because not only will I need money for the transplant because I will need to stay here for like 70 days at least and will need to survive without my dad working and such, but I will also have to pay something towards the transplant as well because we don’t know how much the insurance will pay (if they pay at all). We also need to find a way of raising money because we need to return to Cali in 3 weeks to have these other procedures done as well. Gosh… it surely stinks that my life depends on money. If only I had a money tree in my backyard. So… if you can think of any ways of raising funds or anything… I would really appreciate it. After all, my life depends on it and without the funds, I won’t be able to receive treatment because my family can no longer afford it. I have been extremely appreciative of all the help I have gotten already, but it is nothing in comparison to what I will need. So, if you can do anything such as think of a way of raising funds, spreading the word that funds are needed, saying a prayer, etc… I would much appreciate it.
In the meantime, when I return to NY, they want me to go into the hospital to have a procedure done. Like I told you in the past, I am filling up with air/gas and it is not good. It is building up and since I am so small, it is even worse. It is suppressing my organs, and it is causing them to go into organ failure. It is also putting pressure on my spine and with my bones being paper-thin, they are very afraid that I am going to get a life-threatening fracture. So, they want me to go into the hospital and get a “rectal tube” so that the air will come out of me. Of course this is only temporary and will only come back. So… it will have to be constantly repeated over and over again. So… the hospital will be my home away form home for this procedure. It will really stink. A “rectal tube” is a rectal balloon catheter. It is inserted into the rectum, some as far as the inner colon, and helps to collect or draw out gas or feces. They want me to have it done ASAP because it is causing a lot of problems including total organ failure and therefore, the pressure must be relieved before more damage is done even though it will only come back.
The use of a rectal tube to help remove gas when the sphincter muscles do not work appropriately enough for gas to pass on its own. It helps to open the rectum and is inserted into the colon to allow gas to move downward and out of the body. This procedure is generally only used once other methods have failed, or when other methods are not recommended due to the patient’s condition.
Gosh… this total GUT FAILURE has caused so many problems. It has caused this organ failure to occur because of the gas buildup, as well as aspirations into my lungs and fluid build-up as well as other things. I can’t wait for the day to say that I am “normal” and have my life back. I have made a BUCKET LIST and there is so much that I want to do that I has been robbed from me because of this illness. I really hope that I get to do it before I die.
You will never guess what has been happening. I have been having a lot of trouble breathing. I really haven’t felt well… especially tonight. I didn’t realize it but with everything going on and everything being so hectic, I forgot to take my breathing medicine. Can you believe it?? I can’t believe that I did that because I’m usually so good about my meds.
I haven’t taken my breathing med since Tuesday, so that means three days without it. It’s only was a matter of time that it caught up with me this bad. Tonight I had such a hard time breathing that I literally thought that I was going to die or even end up in the Hospital. Then I realized that I forgot to take my breathing medicine since Monday. What an idiot I am!! So if course I immediately took it. No wonder I’ve been feeling so horrible. But the problem is that I am only supposed to take it once a day and now I don’t know if I should take it in the morning like I’m supposed to, especially since it’s less than 12 hours away. I am scheduled to come home tomorrow on the plane and therefore, I think it is important to be able to breathe. Yet, it is going to be less than 12 hours and who knows if it will be “smart” to take it again?
Well… that appears to be all that has happened today. I guess I better get going because I have a big traveling day tomorrow. I have to “knock” myself out on meds again because otherwise I won’t make it on the plane home tomorrow. That is one good thing because I won’t feel the real “length” of the trip, which is like 8 hours long. When we came to California, my dad was so bored and couldn’t sit a moment longer. For me… it felt like a split second. I was knocked out by the meds that my dad didn’t hear a peep from me the entire trip. I had no choice but to knock myself out because with all that I am going through… the pain and everything… I won’t make it in the air at that altitude without being knocked out.
One good thing about returning home is that I won’t be having to beat up my dad at night anymore and constantly yell at him throughout the night to “stop snoring.” We share a bed since it is a king size bed and he snores a lot. I literally can’t take it. I can’t sleep because of the pain and such. I am so hypersensitive that I can’t get comfortable and be able to sleep comfortable. I can’t even tolerate a blanket on me and therefore, it literally makes sleeping unbearable. The only “rest” I get is the 1-hour I get after I take all my medications because they knock me out for about an hour. Anyway… his snoring literally runs me up the wall. I don’t know how on earth my mom can put up with him. I have gone crazy with him and it has only been a week. My mom spends every single night with him and I just don’t know how she does it. I swear… next time we come here, I am bringing either a nose plug or some other snoring mechanism to try on him or earplugs for me. Too bad I am not rich and can afford another room because I would send him into another room so quickly for some peace and quiet. LOL
So… I guess that sums up my trip to California. We will see where this adventure takes me next. Hopefully things will start to turn around, but it will only be possible through the help of others. I will only be able to continue treatment if I get the help of others since my family can no longer afford it. So… I am really hoping and praying that although I have received help in the past, I am really hoping that more people will help me and help me LIVE. I am really too young to die. There is still so much I want to do and I am literally watching my life slip away.
Thank you though to everyone who has stood by my side and encouraged and supported me. I definitely wouldn’t have been able to do it without you.