Just wanted to update you on what has been happening since things have been getting so very bad. I have also learned some really new and important information that I wanted to share.
I am getting so sick. I basically spend 5 hours awake and the rest in bed. The 5 hours awake are spent vomiting… what a life! I just gotta hang in there though because I just have to make it to Indiana. I desperately need this transplant.
I’ll be honest… getting the transplant scares me. I don’t know how I am going to be able to do this. It is going to be such a costly operation… not to mention how hard it is going to be on my body. As much as I want the transplant… I am really scared and hesitant to get it. I have second thoughts about it even though I need it desperately because without it… I am probably not going to see my birthday. I am scared because I know how difficult this operation is going to be. I know that this operation is so dangerous and runs the highest rejection rate of all transplants. I am so scared of not making it through the operation because of how dangerous it is and how fragile I am already. My parents are freaked out about it as well… especially my mom. I am so afraid of going and not coming home.
Never did I think that my life was going to end up like this. I never thought that I was going to need a transplant… let alone a multivisceral transplant that incorporates a stomach, duodenum, pancreas, and now a liver. It just continues to worsen all the time. But… as my dad says to me “I am being challenged or tested for something better!” Hopefully he is right.
I am continuing to worsen and time is really becoming crucial. I am so weak and I can barely move. I barely even get up nowadays. Like I said beforehand, I spend all my time in bed basically because I am too weak to even move. Even typing takes too much energy and so does getting up and going to the bathroom. Therefore, I try to hold in going to the bathroom as much as possible. But, it really isn’t that hard to do because its getting harder to go to the bathroom nowadays anyway because there just isn’t as much urination coming out despite always drinking. I am constantly drinking because I am so very thirsty, and yet… I can’t really go to the bathroom. I can’t even do anything to quench my thirst. The doctors think it all has to do with my condition and my body shutting down.
Missy won’t leave my side. I guess that is another sign that things are worsening BIG time. Whenever I had worse days than others in the past, Missy used to never leave my side on those days. Mom and dad call Missy my babysitter because she always is keeping a close eye on me. She always was able to tell my parents when I was doing “worse” because like I said… she wouldn’t leave my side on those days.
However, it is at the point where Missy just remains with me all the time. It is as if she senses how much things have gotten so badly. It is really amazing how cats can sense these things. She stays with me all the time and she even follows me when I even get up to go to the bathroom. Even though I only get up for a matter of minutes to go to the bathroom (which is literally right next door to my room), Missy has to come with me and then she returns to the bed with me afterwards. She sleeps right by my hip and against me, as if she is protecting me. I love how she sleeps there because she keeps me calm and I am able to pet her easily in that position.
Even when I am up and about for those 5 hours a day, she follows me. The interesting thing is that if I move and she happens not to be by me during that time, she will literally come running to me. I have nicknamed her “Twinkle Toes” because every time she hears me stirring, she will come running. Plus… she always wants me to hold her and kiss her and everything during the 5 hours I am awake. It is as if the time in bed with her sleeping against me and me petting her isn’t enough. She certainly is one-of-a-kind. Missy is definitely something I am going to miss when I go to Indiana, especially when I have the transplant because I will be there for so long.
Speaking about going to Indiana… I am really nervous about the transplant and such. I guess it is only normal, but I am having second thoughts. My parents say this is normal, but I know it has to be though. I just hope I am making the right decision because I know how dangerous and risky it is. It is as my mom says, “Either I have it and pray that I make it through the operation and hope that the transplant works, OR I just live out whatever time I have left and don’t have it.” If I don’t have the transplant though, I won’t have long because my body is definitely shutting down and shutting down fast.
I know that I need the transplant because without the transplant, I would not be alive today. But what scares me is that once it is done, there is no going back and it’s a decision for life. I know how risky it is and I am just scared I am not going to make it through it. I know it sounds strange, but I am kinda “attached” to my organs. After all… I had them all throughout my life.
I am really worried about getting to Indiana because I will need to fly to Indiana when the transplant is available via private plane. I don’t know how we are going to manage this because it is going to be so very expensive. It is probably going to cost about $12,000-14,000. I am desperately going to need help raising money or something because I definitely can’t afford this on my own.
The only way around this is by relocating prior to the transplant. However, it can be months before I get the transplant even though Indiana has a higher than usual turnaround rate transplant. Patients usually spend only an average of 1.7 months on the waiting list, compared to the 5.8-month national average. But, it still is a “wait.” If we would have to relocate, it would definitely be a problem and a great hardship because not only would it be expensive because we would have to factor in another cost such as living expenses (we will also have my mom and brother living at home in New York as well so it will be a second home basically), but my dad won’t be able to work. For my dad not to work even a week, it can be really detrimental on the business and be a BIG deal. With him not working, the business probably would never survive. We don’t even know how it is going to survive after the transplant because I will definitely have to spend quite some time there afterwards (probably about 2 months or so) and of course that means that dad won’t be able to work then either. So, we really can’t add any more time to that because we are already going to be suffering greatly during that time. Not only will this really severely hurt the business, but we also will not be having any source of income. This means that we will have no source to pay for housing and living expenses (whether it is in Indiana or at home in New York) or medical treatment. It will be a disaster.
So… we really need to cut down on the amount of time spent in Indiana as much as possible so that dad will be able to continue working and we will be able to have money to pay for things. So… like I said before… the only way around this is to be able to go to Indiana when I get the call for the transplant via private plane. Indiana has a rule that patients have to live within 4 hours of the transplant center, but the surgeon is willing for me to live at home as long as I can get to the hospital via private plane when I get the call. So… this is basically the ONLY way that it can happen.
So… it looks like it has to be private plane! I just have to find a way of raising the money now. If you have any ideas… please let me know. If you can help me out in anyway (not just by donating), I would really appreciate it as well. I have tried numerous attempts to raise money, but they haven’t really worked out. I have tried making websites, putting up flyers, putting up messages on Facebook, contacting the media, writing to famous people, etc. I even have gone so far as to write to the president and Queen Elizabeth because I am so desperate. I haven’t even tried all these attempts once, but multiple times… especially recently because I was hoping with the holidays that perhaps I would have more luck since it is the season to “give” and the season for “miracles.” However, nothing has come about. I know the key to this whole situation is to have the media broadcast this because I really need nationwide attention. It actually really tears me apart to know that I can’t get any help from the media because I see attention given to other stories and I wonder why I can’t get the attention that I need when I need it so desperately because without it, I am definitely going to die. I not only need the funds for the plane, but I need the money for treatment as well. Although my family has made “cuts,” the cost of my medical treatment is so astronomical that we really need help in continuing my treatment. Everything is just soooo expensive and can’t be afforded anymore… doctors, copayments, medication, traveling expenses, health insurance, etc. Co-payments alone are over $25,000 a year and not everything is even covered by the insurance. Even my health insurance per month is so expensive because I need to have a very “high” plan because of all of my needs/
However, it has gotten to the point that I can’t do this anymore. I have deteriorated to so much that I need help. I really need someone to really “takeover” and help me out. I fear that without the necessary funds, I won’t really be able to continue treatment… let alone get the transplant because I definitely need the funds to get to Indiana (the plane alone is $12,000-$14,000). Even after the transplant, the cost of the anti-rejection medication, which is something that I will need to take in order to stay alive will cost me $1,000 alone (not including all my other medications). So, if you can possibly not only just think of other ways to raise money but can actually HELP… I would appreciate it.
I think I should also tell you how bad things have gotten. I can’t begin to tell you how bad they have. I never thought that it could get this bad. I can literally feel my organs shutting down. It is the scariest thing in the world. Even though I knew that I was sick, I didn’t realize that I was so sick until lately though. I didn’t realize so many things until I spoke to my new transplant surgeon in Indiana because he kinda opened my eyes up to exactly what was going on.
Not many doctors know what is happening with me because I am so rare and complicated. However, it is amazing that those who know what is happening with me but don’t know how to treat me… they don’t really tell me the FULL picture. They give me 1/2 information so I know that there is something going on, but they don’t tell me everything because they either don’t want me to “worry” or because they know that they can’t help me.
I have always known that I had severe gastroparesis. Gastroparesis literally means “paralyzed stomach.” It is one of the most severe and complicated gastric motility disorders to manage. The stomach does not contract as well as it should, if at all. This results in delayed emptying of food and liquid into the small bowel. Often foo will sit in the stomach for many hours or several days. It is not uncommon for patients to vomit undigested food eaten many days earlier.
However, I never knew how bad it really was. I never knew that I had one of the worst forms of a failed GI syndrome. I was just told that my GI system was “paralyzed” or “dead.” Little did I know that it had what was called “Acute Intestinal Pseudo intestinal Obstruction” or “Ogilvie’s syndrome.” Acute Intestinal Pseudo-Obstruction (ACIP) is a rare disorder characterized by persistent signs and symptoms of intestinal blockage in the absence of any physical blockage. The small and large intestine loses the ability to contract and push food, stool, and air through the gastrointestinal tract. This results in nausea, vomiting, early satiety, heartburn, weight loss, vitamin deficiencies, fatigue, malnutrition, abdominal pain, bloating, and dehydration. It is also no unusual for other portions of the GI tract to be affected such as having dysmotility in the esophagus and having problems emptying the bladder. In fact, when I get “air” in me, I actually have to use my hands and manipulate it out of me by working it out of me by pushing on different parts of my abdomen until I get it out.
I am finally in awesome hands with an awesome surgeon in Indiana because I have learned that I have this condition. I have learned that all this time doctors have said that I needed tube feedings and have tried multiple attempts to “feed” me because I am unable to eat at all were kinda a waste. They were right that I needed these interventions because I was literally starving to death, but they were never going to be effective because the problem was that the food couldn’t PUSH through. Doctors have tried everything from Nasogastric tubes to J-tubes (directly into the intestine) and when they put stuff into me, they automatically became stuck because nothing could be pushed through due to my condition. As a result, Tube feedings may result in bowel obstructions and infections. Even when doctors pushed for TPN, or IV nutrition, it was a poor idea. Complications of IV nutrition include sepsis (infection of the bloodstream), loss of venous access, blood clots, liver failure, and death.
Lately things have gone from bad to worse. I have found out on a recent x-ray that not only have my organs been being compressed from this disease such as my heart, but it is REALLY being compressed that they are shutting down. I didn’t realize how much my GI system was blocking my other organs such as my heart and compressing them until now because I have gotten so very sick.
The doctors are so very worried about how my dilated GI tract (stomach and colon) is compressing my organs. They are worried about the organs shutting down further and worried about me going into septic shock. However, there really isn’t much to do without the transplant. I can go for “decompression,” but it is only very temporary. The doctors are also very worried that I am going to perforate my cecum or other parts of my intestine because once that happens, I can die immediately.
As it is, I go for IV treatment in order to try to keep my organs functioning. But, it is only a temporary treatment and to be quite honest with you… it really isn’t worth it. I don’t even think it is working. I do have another ketamine coma on Saturday, so perhaps maybe that will help.
I really need help and help immediately. I know I am asking a lot, but if you can help me in any way… I really hope that you can. I know this update is kinda mumble jumble and all over the place, but I just wanted to let you know what is happening in case something should happen since things have gotten so very worse, as well as ask you if you can please help me since I have gotten to weak to do continue to do so on my own.
I really don’t know what the future has in store for me. As I said before, I am very weak and weakening everyday. I am bleeding worse than before, my stomach is more distended, vomiting is worse, I am drying out, I can’t quench my thirst, etc. I lay at awake at night and wonder if I am going to see morning. I feel so horrible that I wonder if it is my time to “go” or not. My dad frequently checks on me to make sure that I am breathing because he too is afraid that I am not going to make it much longer. We are living day-to-day and hoping to make it to Indiana. In the meantime, we have all my medical records all set up in case dad has to bring me to the hospital in an emergency.
All Dad keeps wanting to do is to take me to the hospital because he is so very nervous. Both he and I know that the hospital is probably the best place for me because I am deteriorating so much and my dad doesn’t want me dying at home as well, but the hospitals in New York just aren’t the answer. I really need to go to a hospital that would be able to handle me because if I go to a hospital that can’t treat me appropriate, especially since I am so complicated and rare, it can really make things worse… even kill me. I really need to get a hospital that can help me and only about 6 hospitals in the country really are knowledgeable about my illness… one being Indiana. It is a shame that no hospital really can handle me in New York because you would think that a place like New York would have such great medical treatment. So… we are really trying to hold out as long as possible to not to have to go to a hospital in New York because like I said before… they wouldn’t really know how to treat me and probably would make things worse. After all, I am not a straightforward case and they can’t treat me like a regular patient. I am extremely fragile and the wrong move can easily kill me. Plus… I have no immune system and the hospital is the best place to pick up an infection. If that should happen, I can easily die as well. So… I really have to be careful and make some wise decisions before going to the hospital because even though you would think the hospital would be the best place to be especially when you are so sick like me… it may not be the case in my situation.
Indiana really can’t come soon enough. The surgeon would take me tomorrow there, but I really need to have psychiatric clearance there as well. Since the earliest I can get an appointment in that department is January, I will have to wait to go to Indiana until then because the surgeon doesn’t want me traveling back and forth in my given condition. Plus… without the psychiatric appointment, his hands are tied anyway.
Well… I guess I am going to go. I am hoping for better and brighter days to come. Please… if you can do anything… whether it is donating, fundraising, spreading the word that I need HELP, saying a prayer… I would really appreciate it. I am severely deteriorating and I really don’t want to die. I need all the help that I can get.