I know it has been awhile since I wrote last, but just wanted to post a little update since I haven’t written and things aren’t good at all. I don’t think this will be long though considering all that is happening, so please bear with me.
Gosh… I never thought it would be like this. Things just continue to get worse and worse. I am writing because I am awake tonight debating what to do because there are so many things going on and my life is literally hanging in the balance… more so than usual. In fact, I am actually supposed to be in the hospital as we speak, as the doctors want me there but like usual… I don’t want to be there. I hate hospitals, and therefore, I really didn’t want to go. I am really phobic of hospitals, which I know sounds strange because I have been in the hospital so many times already that you would think I would be so “used” to it already. But… it actually has gone in the other direction. That is one of the reasons why I didn’t remain in California alone when my dad returned to New York.
I am doing so horrible and to be honest, I really should be in the hospital. However, like I said… I really don’t want to be there. I honestly shouldn’t have come home from California, but unfortunately there wasn’t any more money left and dad had to come back to work. The doctors really wanted me to stay there even though my dad was leaving, but of course I didn’t want to stay alone. I didn’t want to stay because I was deathly ill and I was so afraid that I would “die alone.” If something happened, there would be no one in California with me or in the vicinity, and it would take at least a couple of days for my parents to come to me since they would be in New York. I am really not doing soooo well and I didn’t want to be alone there since it was a very good chance that something would happen to me. After all, I did have to have the paddles brought in while I was there, I was put into emergency ketamine comas, I had severe low blood pressure, my heart rate was constantly dropping, etc. I had the doctors running all over the hospital with their feet barely touching the ground and they would come back to my room all out of breath and gasping for air. They even admitted that they saw things with me that they NEVER saw in their life before. With everything that was occurring with me, I didn’t want to chance something happening and being there alone.
However, things have only further deteriorated since I have been home even though it has only been a couple of days. It is a shame how my life depends on money so much and is hanging in the balance even more so because we don’t have the money to afford the medical treatment that is necessary to help me. Even though live in New York, the medical treatment available is no way able in any way to help me. You would think that New York would be able to help me because it is such a major city and has such top name hospitals and doctors. However, they can’t. I have exhausted all my resources and therefore, the only possible place for me to go is California. The doctors there are the most amazing doctors ever. They are so knowledgeable. The staff here is so great. I never had such wonderful people before on my team. I never was so well taken care of. The only think that really stunk was that it was on the other side of the country.
My dad says that “I should have stayed in California” with everything that is happening with me. He is probably right because of everything that is happening. I really am deteriorating and with everything happening, every day is a wonder as to if I am going to make it through. We never know from one minute to the next what is going to happen to me. Things just have gotten so bad with me. I can’t believe it.
To begin with… I spoke to the doctors in California today. They only released me because I made them a promise that I would be back in about 3-4 weeks. Like I said before, my dad had to leave because we ran out of money. Dad had to go home and go back to work because there was no one to do that and without him working, no money was being made. So, we made them a promise that we would return in a few weeks after we saved some money. Even though the doctors didn’t like this idea because they knew that my life was at stake and how important it was that I get care because they said that I could “literally die any day” because that is how sick I am, they understood that my dad had to return to work and such. They understood also that I didn’t want to remain in California alone because everyone would be on the East coast and I didn’t want to be on the West Coast alone. So… I really need to go back as soon as possible, but like I said… it depends on the money because we can’t afford it as of now.
Of course when I go back to California, I have to go back when my doctor is going to be working in the hospital as well. I spoke to my doctor in California today and he told me that he is going to be working in the hospital starting of the weeks that are of October 20th, November 17th, and December 10th. He puts in 2-3 weeks each time depending on the time. Of course October 20th is too soon since it is just around the corner and we still don’t have enough money. November 17th might be doable, but I really wanted to celebrate Thanksgiving with my family. This most likely will be my very last thanksgiving, and I really wanted to celebrate it with my family. I was promised that I would be able to have this happen by my parents, but that was a while ago. Of course now that it is getting closer, my parents are going back on their word and want me to go and get treatment in California instead because my health is more important. Of course that is all contingent that I get enough money to go by that time as well though.
I would like to go in December, but I know I would never make it that long. I am so tired of fighting. I am tired of suffering and just wish this would all go away. However, I know deep down that I won’t make it til then either even though I wish that I would be able to push it aside that long and try to be a little “normal” and enjoy some quality of life.
But, I did speak to the California doctor and I found out that it is really imperative that I go as soon as possible though. I learned that my body is really deteriorating and shutting down faster than I thought. In the two weeks that I was there, my liver and protein bloods drastically fell. That means that my body is literally feeding off itself and actually breaking down.
According to the doctor, the human body is amazing and it can “adapt” to a lot of situations. However, I am so sick and such that it can no longer adapt. It has gotten to the point where my body is just living off itself and breaking down. A fall in the albumin concentration appears to reflect deterioration. In fact, the liver stops producing albumin in critical illness: low albumin is a non-specific marker of disease. Albumin is a protein manufactured by the liver. The most abundant protein component of blood, produced primarily in the liver, albumin helps to keep the fluid portion of blood within the vessels, and helps transport drugs and other substances by way of the bloodstream. Low levels of albumin in the blood or its presence in urine may signal edema (the accumulation of fluid) as in pedal edema (in the ankles) or pulmonary edema (in the lungs), which may be symptoms of congestive heart failure, kidney or liver disease.
Albumin is one of the proteins that decrease when the immune system is engaged in battle is a crucial protein called albumin, and that’s where the trouble lies. Albumin has important duties including: protects easily damaged tissues from the free radicals that can destroy your cells and cause cancer by altering cellular DNA; guards against heart disease by transporting the antioxidant vitamins that help keep the coronary arteries clean, binding up fatty acids that tend to clog your arteries and stabilizing the ratio between HDL (“good” cholesterol) and LDL (“bad” cholesterol); binds up waste products, toxins, and dangerous drugs that would otherwise damage the body and encourage disease. It also detoxifies the fluids surrounding cells.
Besides the falling Albumin level, I am also having a hard time swallowing. I can’t eat anything. It is worse than ever. Whereas before I would throw up everything I ate, I am having extreme difficulty swallowing now. Whereas before I could swallow to a point as long as I drank something carbonated, it doesn’t even work now. It started after the operation, but I just thought that it was because of the tubes. I was having trouble swallowing anything (even my medication), but like I said, I thought it was because of the tubes since the tubes were passing through my throat and such and taking up space.
Yet, since I was home, it has only gotten worse. I can’t eat or swallow anything. I can’t eat any carbs whatsoever. The only chance that I have of eating anything is egg whites. Once there is the slightest amount of carbs, I just can’t swallow it. Even with a carbonated drink… it just isn’t possible. I can’t even swallow my medicine, as it just won’t go down.
I spoke to the California doctor regarding this situation and he thinks the disease is rapidly spreading and taking over. He wants to do further dismotility studies and manometry studies. He really feels like my esophagus is suffering from severe dismotility issues and becoming even more paralyzed than before. However, the only way to further look into this matter is by me coming to California and like I said before, I don’t have the money at this time to do so. So… that is just one more reason why I need to raise money ASAP and get to Cali ASAP as well.
I have tried various methods to try to eat again. I have tried buying foods that I LOVED to eat in the past, but nothing makes me wanna eat it. It just is so difficult. No matter what I do, it is like hitting a road block. The only thing I can get down is eggwhites and that is basically nothing. I weigh less than 70 pounds, so it isn’t like I have room to play around with. If I lose any weight, it is disastrous.
I really should be in the hospital though tonight. My bloods have really gone down a lot. I have been expelling a lot of mucous-like stool, so I am not surprised that my bloods have dropped so much. I was even telling the doctors and my dad that things have gotten so badly and thought that my bloods dropped even before I got the results. However, the results only confirmed it.
My bloods are so low that I can literally have an arrhythmia and cardiac arrest at any time. It is really dangerously low… the lowest they have ever been. When the doctor got back the results, they wanted me in the hospital ASAP. That was the first thing out of their mouths. But, they knew that I didn’t want to go to the hospital and such and after thinking carefully about this, they decided to wait til Monday to see what happens. They said it was “up to me” because I really didn’t want to go and the hospitals in New York wouldn’t be able to help me anyway. Since I wouldn’t be able to the hospital that I would actually benefit from (Cali), they didn’t even know if sending me to the hospital in New York would be the right thing because it is very easy for them to make me worse.
My dad wants to know which hospital I would go to. To be honest… the best place for me is California, but since I can’t go there obviously, I don’t know what the next best hospital would be for me. I was already told my Long Island doctors that Long Island hospitals can’t take care of me because I am too “complicated.” I would probably end up in Manhattan at Mount Sinai or something because that is where my New York doctors are located. I would hate to end up there because it is so far from home, but that is probably the best hospital for me to go to if I was in New York. That is another reason why my dad wants me to go to the hospital now. He is afraid that something is going to happen to me and if an ambulance comes to me, I will end up in a hospital around my house, which is really not good for me at all. If I go to a hospital around my house… it will easily kill me because the hospitals are so bad. So… he rather take me when he can to a better hospital instead of risking it and chancing having to call an ambulance and having to go to a hospital around my house. After all… when you call an ambulance, they will just take you to ANY hospital as long as it is the CLOSEST. The closest hospital to my house is not so good. In fact, I always said to my parents that if I am on my deathbed, don’t ever send me there because they will kill me.
So… the doctors gave me more meds to take and are hoping that nothing happens. Everyone is on edge in case something should happen since I can literally have an arrhythmia or cardiac arrest anytime. My dad wants me in the hospital tonight because he doesn’t want ANYTHING happening. He thinks that waiting til Monday is just putting off the inevitable. He probably is right because the meds probably won’t raise my bloods enough, but I am hoping that they will so I can remain out of the hospital on Monday.
But… like I said before… everything is touch and go right now… so I wanted to write just in case something happened. I can very well end up in the hospital because of my very low bloods and I can also very well die (even though I hate to say it). But, hopefully I will make it through this like I always do. They don’t call me the ENERGIZER BATTERY for nothing. However, I do know how bad things are and I told my dad to keep the letter that I wrote him and my mom close by just in case something happens. I wrote them a letter telling them how much I love them and appreciate everything that they have done for me throughout my years. It also gives them instructions as to what to do when I finally pass and where everything is so that they can take care of everything. It also gives them all pertinent information so that there isn’t any loose ends in who to contact and what to do. My parents opened it up before we left for California, so they know what it says. They did it because they wanted to make sure that they didn’t have any questions.
On a better note… I just want to share a little tidbit of info. Remember before I left that I helped save a woman’s life that was hit by a truck and ran over? Well, I found out this week that she finally opened her eyes and she is going to be ok. Well… she will be ok in terms of being “alive.” In terms of recuperating and recovering… he has a long road ahead of her. She is of course in the ICU still, but at least she is out of her coma and has opened her eyes. She is still intubated and has many surgeries ahead of her, but at least she is ALIVE. When I heard this news, I was so happy. I really was worried about her. I really hope that I get to see her soon because it would mean a lot to me.
Well… I am going to get going. I am not feeling well at all. I just wanted to write so that I can let you know what the latest has been. With the flu season around the corner, the doctors are scared about giving me the flu shot. They know that I won’t be able to tolerate the flu at all and if I get the flu… it would definitely kill me. However, they are also worried about giving me the flu shot as well, because I am not healthy or strong enough by any means. They are afraid of all the problems that I might gain by getting it. Never a dull moment.
So… I guess it is just a matter of holding on and crossing my fingers that more funds will come my way. I desperately need them… more than ever… because I need to go back to California ASAP. My life is literally hanging in the balance and I am definitely going to die soon if I don’t go back to get treatment soon. When I go back… I know that I am going to have more surgeries. I know one thing that they are going to be doing will be putting me into a full coma and putting more tubes in me. They are going to put me in a FULL coma for at least a week and see if my body will accept the tubes because my body wouldn’t accept them last time. It is like my only chance. We have to buy time til the transplant.
We also need funds because we are planning on going to Nebraska and Indiana. We have to go to these places because these are the only places the insurance company will cover the actual transplant surgery. Even though the insurance will pay for it there (the actual surgery), I still will need lots of fundraising and money to go because I will have to live there for awhile and the expenses that I will have to spend there will be astronomical. Yet, we are hoping that the insurance company will still grant us the ability to have the full transplant in California since my whole entire team is there. In Nebraska, I would be the first multi-organ visceral transplant. They only do intestines and liver, but I need a new stomach, small intestine, large intestine, pancreas, and possible esophagus. The doctors are willing to try to do the surgery on me, but I don’t want to be the guinea pig… not when it is one of the most dangerous transplants that you can have and there isn’t one done that hasn’t had a complication. Indiana has just started doing the multi-organ visceral transplants since January and therefore, even though I won’t be the first, I still will be one of the first. So… it still isn’t sitting well with me. You know? There are other reasons that would complicate me having the transplants at those locations, but I won’t get into them. In either case, my anti-rejection meds won’t even be covered after the transplant either. Who would think that the actual meds needed to keep me alive afterwards wouldn’t be covered? So… that is even more reason why I need to fundraise because those meds alone will cost me at least $1000 a month on top of my other medication expenses.
I should know that things are getting really bad because my cat, Missy, won’t leave my side. She is simply an amazing cat. Whenever things get really “bad,” she never leaves me. My parents can always depend on her to tell them if I am not doing well by her doing this. She will literally follow me everywhere I go and sit with me everywhere I sit. Missy is one amazing cat. After all, they say that animals sense things. I just love her so very much. I don’t know what I would do without her. That is another reason why didn’t want to remain in the hospital in California. If the doctors said that I am so very “sick” and can “die” any day… I want to be able to spend as much time with my family and pets as possible. I don’t want to spend my time in the hospital… especially when I can’t even see them because I am so far away. It isn’t like they can visit me either. You know?
Well… gonna get going. Talk to you soon.