I can’t believe the news that I was just given. Things just continue to get worse and worse. It is like I just keep hearing brick walls and I am continuing to deteriorate. Time is of the essence and I am rapidly deteriorating. I don’t have time for all this BULLSHIT that is happening now. I mean really… why does life have to revolve around money so much? It is such a shame because since it does… my life is so much at stake. It turns out that unless I raise over $100,000, I am literally screwed. There is so much that I need to tell you that it isn’t even funny. I don’t know whether to cry or not, I am so numb as of right now to everything that is happening because things are just horrible.
I am doing horrible and time is counting down til I leave for California. I am supposed to leave for California in a little over a week. I am scheduled to leave September 23rd, but who knows honestly if I am going to make it that long. Dad, the doctors, and me are hoping that it will happen, but I guess we won’t know for certain until I actually touchdown in San Francisco on that Sunday. As of right now… things are just so touch and go.
I am not doing well at all. First of all, I have bleeding going on someplace in my digestive tract. We knew for a while that there was bleeding going on, but we couldn’t find out where it was located. We have tried various ways to determine the location, but they have not been able to do so. We have even tried colonoscopies, but they were not really successful, mainly because we weren’t really able to prepare for it because of my failed GI system. I have such a paralyzed stomach that even with a NG tube that bypasses everything and goes directly into the stomach, we weren’t able to “clean” me out. We poured in the laxative “Go Litely,” which would make anyone have the runs. However, due to my paralyzed stomach, we only got less than a quarter of a liter into the NG tube because the tube started to back up and the liquid came back out of the tube. As a result, we had to end up pulling out the tube. It was a failed attempt to “prepare” for the procedure and nothing even happened with the amount given even though it should still have had an effect. However, they tried to do the colonoscopy the best that they could, but they still couldn’t determine where the bleeding was coming from.
Despite the colonoscopy and endoscopies and other exams, they couldn’t locate the bleeding. Yet, they knew that there was bleeding because there was blood in my stool. It was not as bad as it is now, so even though they were concerned, it was not a great emergency because the amount wasn’t too great. Yet, it is at the point now where the bleeding is really significant. I am literally pouring black stuff out of my toosh. It is like liquid coming out and it is purely black. I am also getting the worst stomach pains in the world and then I get this pure liquid that comes out that is black. So… we definitely know something is going on.
In addition, I can barely go to the bathroom to have a #2 (bowel) movement, if at all. Not to sound disgusting or anything, but it feels like I have a “hole” in my intestine and I just can’t go to the bathroom. I don’t know what is up with that. All I keep doing is producing “mucous” or something that looks like “chicken fat,” if anything at all. It is like my intestines are not “toned” enough to push anything out and yet, it keeps blowing up and filling up with gas. My GI system is completely a HUGE mess.
I have also received my bloods and they are not doing well either. My bloods are significantly dropping and I am really at risk for dropping dead from cardiac arrest. In addition, my bloods are so bad that it is causing my heart to beat irregularly. This isn’t good at all, especially since I have all that gas/air that is filling up in my because of my failed GI system. I am literally so filled up with gas/air and it is seriously getting worse. It is putting so much pressure on my organs that it is causing organ failure and causing the intestines to twist. It is causing me to have trouble breathing and it is causing my heart to have trouble beating as well because of the pressure put on the diaphragm as well. It is a real mess. So… to have this pressure giving my trouble with having my heart beating in addition to my bloods causing my heart to beat irregularly… I am in serious jeopardy of having a heart attack or something serious happen.
In addition, the gas/air is putting severe pressure on my spine as well. My bones are paper-thin and I am already suffering from “Dextroscoliosis.” The doctors are so worried that between the pressure exerted from the gas and from the poor bone structure that I have, as my bones are paper-thin and the doctors say I am a fracture just waiting to happen, they are afraid that my spine is going to break in half. They are afraid that the vertebral bodies of the spine are going to be compressed. If something like that happens, I can easily become paralyzed.
So… as you can see… things are really getting worse. My bloods are getting really bad, I am bleeding more than before, I am weaker than before, I am collapsing, etc. I desperately need to get to California as soon as possible because they are the only ones that can basically help me. The doctors really would like for me to be in the hospital now because I need URGENT and immediate care, but they all know that going to the hospital here would kinda be pointless because they wouldn’t know how to deal with me and how to treat me. I desperately need to get to California, so hopefully I will be able to make it there on Sunday.
As of right now, I am scheduled to go to California for surgery on Sunday. I will be having multiple procedures during this time. I am having surgery to put a tube in me because they really need to try to “buy” some time since I am rapidly deteriorating. I am literally at a level that is borderline death. I was told that if I was a male, I would definitely not be alive right now. Luckily, I am a female and therefore, I can live at a lower level. However, females can only live til a level of a BMI of 12 at the lowest and mine is like 12.2. So… time is of the essence.
The doctors are going to put the tube into the lower portion of the small intestines even though they know that the entire GI system (stomach, intestines, etc.) is dead. However, they are hoping that perhaps they can find a little bit that might be “functional.” They know that the upper part is completely gone, but they are hoping that maybe there might be a small and tiny piece at the bottom that might be “alive” still and can be worked with. So, the tube will bypass the esophagus, stomach, and most of the small intestine. If successful, I will undergo another operation to further surgically implant the tube so that it will become more permanent and it will be coming out of abdomen.
All these surgeries will be done under bypass because I am way too sick to do it any other way. The doctors claim that I wouldn’t survive any other way. It really scares me to know that I will be on complete “bypass” during this time, especially since there is a chance that they might not be able to get me off the “bypass” machines afterwards.
In addition, with the tube implanted, I will never eat again. So, this can be the last week of eating for the rest of my life too because once I get the tube, I will never eat again. I really am not “thrilled” with that idea because that means that I am going to be “hungry” for the rest of my life because feeling “full” isn’t just about being “fed.” You feel “full” and “satisfied” because it enters your stomach and your mouth, so it registers in your brain. However, since it won’t be doing that for me, I will be always hungry. My stomach will always be rumbling even though I will be getting “fed” a bit through the tube. It will be torture.
I also don’t like the idea of not eating because I am going to feel “funny” being around people and always watching them eat. I am going to be even more hungry seeing them eat and knowing that I can’t. Plus… I am sure that other people will feel funny too eating and having me watch them too. It won’t be a great situation for anybody. Even though it might “buy” my time, it really might be more torture than anything else. Plus, who even knows how much “time” this tube will buy me. Who even knows if the tube will be worth it?
In addition, since I am bleeding and everything, the doctor wants to implant a camera surgically into my intestines. I can’t swallow the camera because I will only vomit it back up. That has happened already in the past where I swallowed the camera and then many hours after, I vomited the camera up because it can’t pass through my stomach since it is “dead” and nothing passes through. So, they are planning to surgically implant it into my intestines.
I am also scheduled to have snail venom to for my neurological disease. It has been pioneered in California and since it is the underlying cause for the gastroparesis and autonomic dysfunction and spreading like a wildflower, they are going to try the snail venom on me. I have tried countless other treatments, but nothing has worked. They also want to try to get me off some of the hardcore meds that I have been taking for the underlying neurological disease because it only compounds the severe gastroparesis. Plus, if I get the transplant, they don’t want the new organs to suffer the same fate and therefore, they want to get me off the drugs that possibly can contribute to causing the gastroparesis as well. So… since I have tried other modalities and nothing in the past has worked, it is really important to go to California because I am at the bottom of barrel with getting treatment for this illness and I desperately need something to help me with it. California is the only place where I can get this treatment.
However, I am having the hugest problem now. Who says that when it rains it doesn’t pour, right? I am so upset that I am literally hysterical over the whole thing because I am so scared of what is happening now. It doesn’t even feel realistic to what is going on. It is like a nightmare. I never thought this was going to happen.
It turns out that the insurance will not grant me the ability to have the transplant in California. Can you believe it? I am rapidly deteriorating, literally on borderline death, and I can’t get the transplant in California because the insurance won’t cover it. This operation is over a million dollars and is extremely rare and risky. It runs the highest rejection rate of all transplants. I need a new stomach, small intestine, large intestine, and pancreas. Only 8 hospitals in the country do this kind of surgery and not all hospitals even transplant all these organs. The type of transplant that I need is called a “multivisceral transplant.” However, out of these 8 hospitals, very few hospitals do it, as most of these 8 only do “small bowel,” which includes only the small intestine.
I got the phone call today from California that the insurance company will not pay for the transplant there. They told me that the insurance company would only pay for it there in California if I was denied at the other places that it would pay for me to have it at, which were at Nebraska, Indiana, and Georgetown. I can’t believe that they want me to travel to all these three places and get evaluated and denied before they will pay for me to have it performed in California. Time is not on my side and I don’t have the time to travel to all these places. Plus, I don’t have the money either. You know how expensive it would be to go to all these places to be evaluated between airfare, hotel, etc. Plus, my dad would have to take off so my unnecessary time from work and he can’t do that either. Traveling is not easy on me at all, as it really flares up my disease and makes it extremely worse. How do they think that I am going to be able to travel to all these places and be evaluated?
California completely agrees that I don’t have time to travel to all these places and have the evaluation done there. I don’t have time to travel and be “denied” so that the insurance will pay for the operation to take place in California. Plus, I really need to have the operation done in California too because that is the only hospital that is situated to deal with my underlying neurological problem, which is definitely going to be a problem during the transplant. Therefore, I will need someone (like California) to deal with it such as by giving me the snail venom or ketamine because it is really going to exacerbate the neurological problem. It is spreading like a wildflower as it is, and it is going to really take off when I have this transplant. I am really going to need all the help I can get with it. So… how am I supposed to go to a center that isn’t able to deal with this aspect?
My insurance company will only cover the transplant at 3 hospitals even though they cover me to be seen at all the hospitals like California and such. Yet, you don’t know if you will be covered for the transplant or not until you go to through the “precertification” process, so it isn’t like I knew prior to going. Anyway, the only 3 hospitals that they will approve me to have the transplant at are Nebraska, Indiana, and Georgetown. I really can’t have it done there because not only do they not have the team to treat my underlying neurological disease, but after speaking to all of them, I don’t really feel as comfortable with them as I do with the doctors in California. We aren’t talking about a transplant either that they do hundreds of a year. This transplant is done only like 2-3 times a year in each hospital. It is really risky and runs the highest rejection rate. Therefore, it is really important that I feel as comfortable as possible with the surgeons and hospital. You know?
In addition, when I called the other hospitals, I learned a few things. I learned that Nebraska only does the “small bowel” transplant. That means that they only will transplant the small intestine. They said they would remove the large intestine and most of the stomach, but they will only transplant the “small intestine.” However, my stomach is the worst out of everything and even if they leave a piece of it, there is no point in having any of the transplant because the complete stomach is “dead.” So, there really isn’t a point having Nebraska doing the operation because I need a multivisceral transplant (stomach, small intestine, large intestine, pancreas) and they don’t do that.
As for Indiana, they do the multivisceral transplant, but they only started doing it as of January this year. So… they are fairly new with the transplant. I know how rare this transplant is already, as hospitals only do 1-3 a year, but they have only been doing it there for this year. So… it isn’t like they have so much experience. Do I really want to undergo a BIG surgery like this with a hospital that isn’t so experienced? I mean we aren’t talking about a minor or everyday surgery.
So… I really am having HUGE problems with the transplant because time isn’t on my side and I desperately need to have it done ASAP. However, I am being held up because I need to be “covered” as much as possible by the insurance because we are talking about over a million dollar surgery, and non way can I afford it by myself. However, California even sees how I can’t travel to all these other hospitals to be first “denied” in order to be covered at California because I don’t have the time, ability in health to do so, funds to travel, etc. They have been fighting with the insurance company like crazy, but haven’t gotten anywhere. I am going to call tomorrow and see what I can do. I don’t know what I am going to do if I should lose and be forced to go to all these other hospitals prior to getting the approval at Stanford. I will never make it because I don’t have the energy, time, money, resources, or even health to do this anymore. I am really scared.
To make matters worse, I even found out worse news. I found out that I would need to raise over $100,000 because after I get this over million-dollar operation, I will need anti-rejection meds that will not be covered by my health insurance company. This transplant and lung transplant are the riskiest transplants and run the highest chance of being rejected. Therefore, whereas other transplants may be able to cut down on the amount of anti-rejection drugs later on in the future, I will always need to take the utmost amount because of the potential to reject the organs. However, I don’t know how on earth I am going to afford to continue to live despite getting this life-saving operation because it will cost me like $1000 a month just on anti-rejection meds. Here are meds that I will need to take in order to survive after the transplant and yet, I won’t be able to take them because I can’t afford the $1000 a month for them. That isn’t even including all the other expenses that I will need for my other medications. That $1000 is just for the anti-rejection meds. So… I don’t know what is going to happen.
I am really scared. How on earth is this all going to work out? I really don’t see a clear-cut answer to all these problems. I am hitting brick walls everywhere. I am such a burden to my entire family. Sometimes I just wish that the “end” would just happen already because I am causing such a burden, especially a financial burden, on my family. They have given up so much for me, and it definitely isn’t fair to them anymore. My parents should be at a point in their lives where they should be enjoying themselves. However, they don’t do anything because of me. They don’t even go out to dinner because of me. We haven’t even been on a vacation in over 10 years or did anything “fun” because of me and the expenses. My father works himself ragged because of me (7 days a week from 3AM to 7PM) and he is no youngster. He doesn’t even have a desk-job, but his work entails being physically active. If something should happen to him because he is overly worked or has a heart attack because he works so much and isn’t so young, I would never forgive myself. It just isn’t fair what I am putting my family through.
I am not going to pretend and say that everything is “peachy” and I want to always be alive. Sometimes I wonder what life would be like if I wasn’t here. When things are going this bad and when I am feeling this horrible, I can’t help but think that things wouldn’t be better if I wasn’t here. My family would be able to enjoy themselves and they wouldn’t be burdened with the financial strain from me. The house or business wouldn’t be in jeopardy either. In addition, it would even be beneficial for me as well because I would be out of my suffering. I am tired of suffering. I am tired of being sick.
I honestly don’t know how much longer I can hang on. However, despite how much it might be better if I wasn’t here because I would be out of my “suffering,” I still continue and want to LIVE because I am not done here. There is so much that I still haven’t done yet and so much that I still want to do. I was robbed of so much from this disease and I really would like to still be able to do so much. I have even made a BUCKET LIST, which I am hoping to complete. Some of the important things on my list are to get married, have a family, go to Atlantis, etc.
The pain and agony is relentless, but despite all this… I continue to push on. I am so afraid of what is going to happen because I am getting so bad. I never thought it was going to get this bad. We never know anymore if I am even going to wake up in the morning because I am so very sick. So… we are just crossing our fingers and toes that everything is going to work out. I am so afraid of everything, but the thing that I am most afraid of is leaving my family. That is the main reason why I continue to push on and not give up!!
I feel so bad for my parents. They want me to get better so badly and yet, their hands are tied. They keep saying that they “aren’t going to let me die.” But, in reality, they aren’t in control. I would like to believe that they had the magic to make me all better and what they said was true… but truth be told… they don’t. They keep telling me that “everything is going to be ok” even though I know deep down that it isn’t. I know that I am dying inside and my organs are shutting down. I know that I don’t have long to go because of the way I am feeling. It is a feeling that only someone who is experiencing “dying” can explain, but I know that it is happening. Yet, they keep telling me that “everything is going to be ok” so that I don’t give up. They keep telling me “how much I am needed here” and how they “won’t be able to do this and that without me.” I know they are scared. My dad is very affected by it, as there is no talking to him. He is extremely “jumpy,” which is so unlike him. Like I said before… I am scared for what is going to happen with this illness, but I am more scared of leaving my parents.
I don’t want to die and leave them. They say that the hardest thing for parents is to bury their children. I really hope and pray that it doesn’t come down to that!! However, I did make them letters telling them how much I love them and how appreciative I am of them in case something does happen to me. I gave them the letters to hold onto because it has everything in them such as a lot of important information too. But, I told them not to open it until that day should come, which will hopefully not be soon!!
I really need all the help that I can get because my family can no longer do this alone. We have tried alone to pay for my treatments and such, but it is no longer possible. I am so scared because I know that we can’t afford to keep me alive alone and how desperately I need the help of others if I am to survive. It is now up to others in the world to help me live because like I said before… my life revolves around money and we can’t afford it on our own. I have tried various ways of raising funds, but they haven’t been too successful. If you can think of any ways or can do anything to help out, I would really appreciate it. Even saying a simple prayer or spreading the word of my website would be a great help and much appreciative. Like I said before, I don’t want to die and we really need the help of others in order for this not to happen!!
On a better note, I was really shocked today to see that I flowers came for me. The doorbell rang and to my surprise there was a delivery of flowers for me. I happened to order clothes awhile back on the phone and when I spoke to the salesperson, we had such a interesting conversation. I told him about my story and he was also an amazing person. Ever since then, I have gotten surprises from him expressing his “thanks” for our conversation. He had made me a card that he had drew and he had sent me these flowers as well. I couldn’t really believe my eyes when I received any of this. Just as he had said that he an “amazing conversation” with me and was thankful for it, I was also very thankful to him as well for listening and talking. He really brightened up my day when we spoke, as well as those days when I received those wonderful surprises. He especially brightened up my day today with those beautiful flowers… a day that was really horrible.
Well… I am going to go and rest. My brain is fried from everything that has happened today. Hope things turnaround soon! But in the meantime, please say a prayer and I am going to continue to hang in there. They don’t call me “WAR HORSE” or the “ENERGIZER BATTERY” for nothing. I KEEP GOING AND GOING AND GOING. 9 more days til surgery!!