Well… it’s about time I guess I should write and say what has been going on. I haven’t been feeling well lately, so I haven’t been able to do so. Things have been really going downhill, as I have really taken a big turn for the worst. However, knowing that I have taken this turn and anything is possible… I figured that I would write and inform you all that has been happening because so much has been happening that it is unbelievable. Plus… I am so very ill lately that I honestly don’t know how much longer I can make it. I am literally hanging on by a thread. If this update is a little mumble jumble, please bear with me because I am so very ill. But like I said before, I want to inform you all that has been happening and all that is going to be going on.
First off, I am not doing well. I have unfortunately taken a turn for the worst. I am really afraid because I honestly feel like I am going to die. In fact, my parents are very scared that this is going to happen because I am not doing well at all. I am rapidly deteriorating and we are hoping that I am going to “bounce” back. However, I have never been this bad and I am really suffering. I am really giving not only myself a big scare, but my family is fearing for my life. In fact, we are trying to hold onto staying “home” as long as possible because I am supposed to be leaving for California on February 3rd, but it looks like we might be forced to leave for John Hopkins or Cali as soon as possible because I need to be hospitalized.
As I have taken a turn for the worst and barely hanging on, I really need to be hospitalized. My body is literally shutting down and we are witnessing events with my body that we have never done so before. I am scared because I have seen the exact same thing happen to my grandma (in the exact sequence), and she died within 2 months. I really need desperate help and if I don’t receive the necessary help that I need, I fear that I am going to be suffering the same fate. However, the problem is that there just is no money to be had.
Even though I need to be hospitalized immediately because my life depends on it, we just don’t have the money to do this. We cannot afford many things anymore because of my costly disease. My disease has really stripped my family of money. I know I shouldn’t let money stand in my way of getting “help” in the hospital, but all I see is dollar ($$) signs and I don’t want my family to suffer anymore or to go into anymore debt. They have suffered enough. They can’t even pay the bills that they have now. They can’t even pay the mortgage. We are even having difficulty putting food on our table. They have done so much for me already, I can’t ask them to suffer more. I just wish that I could receive the necessary “help” that I need through the media or something because I need donations so badly. Without help from others, there is no way I am going to be able to pay for treatment or even be hospitalized and therefore, I am going to die in the very near future.
I really need to be hospitalized because my body is shutting down and the organs are failing. I am the definition of total system failure. I have multi-organ failure… or however you say it. Anyway… even though I have always suffered from discoloration throughout my body because of my neurological disease and autonomic dysfunction, my legs are becoming “blacker” than ever. I can’t believe how “black” my legs are actually becoming and the blackness isn’t disappearing either when the legs become elevated. In the past, the coloration in my legs resumed somewhat normal coloration when they were raised and elevated, but nowadays that never happens. No matter how much I keep them elevated or how long, they still remain black. Therefore, it shows that the circulation is just not there anymore. The tissue is just completely dying.
I am also suffering from severe edema especially in my legs. We already know that my heart is in jeopardy and having problems because my heart bloods are not good at all. My heart bloods have been so low lately that I can easily have an arrhythmia or even have cardiac arrest. However, it is at the point now that I am having edema all in my legs as well. Edema is an accumulation of an excessive amount of watery fluid in cells or intercellular tissues.
The edema can be the cause of either the heart problems and be further proof that I am going further into heart failure or it can be a result of my kidneys failing me. In terms of the heart, this is when the heart cannot pump blood properly to all parts of the body. If one or both of the lower chambers of the heart lose the ability to pump blood effectively, the blood can accumulate in the limbs, causing edema. My kidneys have also been failing me lately because of the pressure that has been being exerted on them. Due to my failed GI system, there is so much pressure being exerted on all my organs, which are causing them to further to fail. The pressure is even being exerted on my heart and the doctors are very fearful of that because it is causing its own host of problems. It is very dangerous to have pressure on all these organs. Plus, with me being so tiny, it really compounds the problem. The edema is so very bad that I can literally fingerprints in my foot and leg.
I have been getting the worst chest pains lately and also have felt like I am coming out of my body. It is really the weirdest feeling. It is so very difficult to explain and only someone going through it or who has went through it would probably understand it.
In addition, I have been getting the worst spasms and cramps throughout my entire body. This is a further sign that my bloods have fallen even more and my heart or kidneys are failing. A muscle spasm or cramp is a painful involuntary contraction that can stop even an athlete in their tracks. Muscle cramps are when a muscle gets tight (contracts) without you trying to do so. The muscle gets tight and does not relax. Cramps may involve all or part of one or more muscles.
I never had spasms and cramps like I have been getting. I can’t even stand without collapsing. The spasms are throughout my legs including in my ankles. I can’t even walk no matter how hard I try. I am really getting scared.
I also have been bleeding more and producing more mucous from below. We are still no certain where the bleeding is coming from because the doctors are unable to do certain tests that would determine that. All we know is that it is coming somewhere from internally. In terms of the mucous, we don’t even know exactly what is causing this either.
With all the mucous and blood, I have also lost some more weight, which is the LAST thing that I could afford. I was already less than 70 lbs., so losing any weight is really detrimental. Doctors already said that I wouldn’t be able to survive at any lower of a weight and here I am… losing some weight. I am really becoming petrified because I am coming closer and closer to the 50s. That really freaks me out.
I really need to be hospitalized, but unfortunately I can’t just go to ANY hospital. Since I suffer from a rare and complicated illness, I have to go to a hospital that will be able to handle me. Therefore, the only 2 hospitals that I am able to go to is of course Stanford Hospital, which is in California and John Hopkins, which is in Maryland. Of course Stanford is the best option, but unfortunately it is on the other side of the country. John Hopkins is at least located in Maryland, which is only 5 hours in driving and only a little over an hour if we fly. The doctors in Stanford told me that in an emergency to go to Hopkins because that is where their “mentors” are located. It is also the closest hospital to be airlifted to if there is an emergency.
So… the only 2 hospitals in the pot to go to are Stanford and Hopkins. Even though I really need to go to Stanford, it is across the country and definitely would require a plane to go to. With all that has been happening with me, we aren’t sure if putting me on another plane is even the “smartest” thing to do. We think that perhaps putting me on another plane might further do harm, so dad is thinking about putting me in the car and driving me there. Plus… if you think about it, it really is the same amount of time whether you drive or fly because by the time you go to the airport, park the car, get there over an hour before because you have to go through security, etc.… it really comes out to the same time. You know? So you really aren’t saving anything time wise and at least we will have our car with us if we drive.
But like I said in the beginning, we are really suffering with not having money and we cannot afford to really have me hospitalized. Not only would it cost money to have me hospitalized because no one does it for free, but we would have to pay for traveling expenses and my dad would have to have hotel arrangements and everything. We just don’t have the money. If only the media did a story on me or more people knew about my story. Perhaps more funds and support could be brought in to help so I wouldn’t have to worry about something so important as this.
You know things are bad when I don’t even get dressed, put makeup on, or wash my hair. Even though I don’t really go out, I still like to look my BEST. After all, if you look good, you feel good. Plus, I don’t like to look like I am sick if anyone should see me. So, I always try to conceal it and try to make myself look as GOOD as possible. That is why when people see me, they don’t fully realize how truly sick I am. I am able to hide it.
In addition, whenever I feel like I am going to the hospital, I especially make sure that I wash my hair in the sink. I can’t take a shower due to my autonomic dysfunction and neurological disease because of the sensitivity. Therefore, I always end up washing my hair in the sink. I always make sure my hair is washed when I feel like the hospital can be an option because I don’t want to go to a hospital “dirty.”
However, I am so sick right now that I can’t even do any of that. I am not able to wash my hair, get dressed, or even put make up on. For me not to do any of that… it really shows something is definitely wrong. I also have been sleeping a lot lately because I feel so very weak.
In the meantime, my parents are watching me deteriorate. We are trying to get medicated ice-pops in me as much as we can. They have medicine that is good for my heart and everything. I take them around the clock… even all throughout the night. Dad actually goes down at like 3 AM to get them. There isn’t anything that Dad wouldn’t do for me.
Mom is trying to keep me busy and my mind going so that I am kept as calm as possible. She has been playing games on the iPad with me. She really is the best.
My parents are blaming going to Indiana as a BIG part of the reason why all of this is occurring. I am very weak and fragile and every time I “travel,” it isn’t easy on me. Anyway, my parents are very upset because this time when we went to Indiana, we went all the way there for absolutely NO REASON! I literally went all the way there for them to send me home. They didn’t even put a finger on me or examine me. Instead, we just literally sat at a table and they said to me, “Go home and enjoy whatever time you have left!”
I never saw doctors so livid. When I told my California doctors all that happened in Indiana, they were absolutely infuriated. They know how much I need that transplant and how urgently it is needed. Without it and without it soon… I am definitely going to die. California wants to do the transplant but their hands are tied. Unfortunately, the insurance dictates where I can have the transplant and even though only 6 hospitals in the country can perform this rare, risky, and radical transplant, they will only pay for the transplant to a point in Nebraska or in Indiana. They will only pay for me to have it in places that are not at the best places for me to have it done. In Nebraska, they don’t even do “multivisceral organ transplants.” They just really do intestinal transplants and therefore, I would be like a ‘guinea pig.’ In addition, the head doctor that was supposed to be their “best” doctor isn’t even there anymore. So why would I want to have it there? As for Indiana, they sent me to a place that seemed like they would want to do it and then they literally denied to do it. So… I am basically left with nothing.
We can’t believe that we went all the way to Indiana for nothing. When we saw the doctors, my dad said he saw it right away that they weren’t going to do the transplant, but he was still hoping that he was wrong and that they were going to do it.
The doctors in Indiana refused to even touch me. They knew nothing about my underlying neurological disease and autonomic dysfunction. They took one look at me and literally FREAKED. They said I was the most complicated and complex person that they have ever seen. They were freaked out about everything about me… my weight, my discoloration, etc.
I have some theories why they made me come all the way there to only turn me away. One theory is that they didn’t realize truly how BAD I was until they actually saw me. Then when they saw me, they literally freaked out and knew that they were in over their head. Another theory that I have is that perhaps they were hoping that they could pull it off because lets face it… whoever cures me or helps me has it “made.” They will write me up in the journals and become famous. But then when they saw me, they realized that they were in over their head and that was it. Finally, another theory is that my story is so complicated and exquisite and unique that maybe it was just unbelievable. Maybe they thought it could never be that bad! You know?
I did learn some things though when we went though. I found out that I am so very tiny that the transplant donor would have to be only 5-8 years old. Can you imagine? I was shocked to hear that the donor would have to be so very young considering that I am an “adult.” I mean… I know that I am tiny, but shouldn’t my organs still be the same size?
So here I am… now sent home from Indiana because they couldn’t help me. Now there is no where to get the transplant that could save my life because the ONLY place that can and want to do it are unable to do it because of the cost of it and the insurance not willing to pay for it. I need now donations and support more than ever if I am going to live and be able to have this transplant because that is the only possible way it is going to happen. My California doctors are trying to fight with the insurance company because the places that they are willing to pay refuses to do it. But… who knows what is going to happen with that. I know it probably won’t do anything.
Indiana basically sent me home basically to DIE. They said that I should “Just enjoy whatever time I have left.” They said that I could buy some extra time by having TPN put into a central line, but I said to them “NO WAY!” I told them not to tell that to my dad because they are giving him false hopes that I am going to live longer and in reality, it is only going to make things worse. I told them that it is no way to live because it will only bring about further suffering and it is not worth spending my last days suffering. I want to enjoy whatever time I have left… not suffer more. You know? Total Parenteral Nutrition (TPN) is a last resort feeding mechanism that can be used only temporarily in cases where a nutrition boost is needed short-term or immediately following surgery.
They said that I can get TPN put into central line. Yet, first off, they refused to even touch me to put the central line into me. So I would first have to find someone to put the central line in. So how can they say to do something and then refuse to do the procedure, right? Second of all, it will only aggravate my disease. It will cause my neurological disease and autonomic dysfunction to worsen because anytime anything traumatic enters my body or have a foreign object in me, it worsens it.
People on TPN are at high risk of sepsis (infection in the blood stream). It is more common to develop sepsis on TPN than people who are on chemo because the high sugar content in TPN draws bacteria into the central line. In addition, people on TPN often have a lot of bacteria and fungus, which builds up in the small bowel and passes into the bloodstream increasing infection rates. Another complication of TPN includes liver failure if used long term. This varies in individuals as some on it for many years never develop problems, while other develop them within a few years.
Indiana had no idea what they were saying. They were totally contradicting themselves allover the place. Due to my illness and receiving organs from a 5-8 year old and my body structure, they said to me that they didn’t really want me weighing more than 100 lbs. However, they said to me that they MIGHT be willing to do the transplant if I gained up to 90-95 lbs. When I told this to my doctors in California, they laughed and was even more infuriated. Not only were they mad that they didn’t even examine me made their decision based upon just looking at me, but they said “if you can gain weight or weigh that much, you wouldn’t need a transplant in the first place!”
All I wanted to do was to get out of Indiana. The doctors at the meeting kept hemming and horning that they weren’t going to do it, but instead of just saying it directly and letting me go… they just beated around the bush. It got to the point that I said, “Look… face it… you aren’t going to do the transplant.. you are freaked out… so that is it! I just wanna go home!” All I wanted to do was cry, but I didn’t want them to see. I wanted them to leave the room so much so that I could cry without them seeing me. I mean… I was literally given a life sentence.
So now I have nothing else left except either the transplant in California if I either end up paying for it myself or if by some luck the doctors get the insurance to pay for it…, which I highly doubt. I also highly doubt I will be able to pay for it because it is so expensive and I am not even receiving enough support to receiving enough treatment to sustain me at home in terms of medication, weekly ketamine comas, traveling expenses, copayments, etc. Money is so “tight” that I cannot even talk to a psychologist! It is bad enough that I am suffering physically, but the emotional torture that this is playing on me is enormous. However, I can’t even get the help that I require in that area either or get help dealing with this or dealing with “dying” because we can’t afford it. Money just rules the world. “When I was young I thought that money was the most important thing in life; now that I am old I know that it is.” It really is true what Mark Twain once said… “the lack of money is the root of all evil.”
So besides hoping and praying for California to be able to do this transplant that I know deep down won’t be able to be done, the only other option that I have is the ketamine coma. It is also very rare and radical and risky, but it is my only chance. Like I said in previous updates, I really need to go out of the country to get the necessary ketamine coma that I require because the amount that I need is not FDA approved. However, it will end up costing me about $100,000, which is also not covered by insurance. So, I will still need help from people. I am so very desperate!
In the meantime, I am headed to California because even though I won’t be able to get the really intensive ketamine coma with that really HIGH dose, at least it will be much higher than I am getting here in New York. So, I am supposed to be leaving February 3rd for California to get clearance and work on receiving the coma. We are desperately running out of time and hopefully this will work. This is my only other option. After all, in a high enough dose, ketamine can hopefully reverse the disease… at least reverse the autonomic dysfunction and autonomic dysfunction.
Even though I did receive bad news in Indiana, I did get to spend some time with my dad. It was really nice to be with him. I love spending time with my dad because he is not only my dad, but my very best friend. He takes such great care of me. He isn’t taking the news that we received very well. There isn’t really any talking to him to be quite honest with you. We all know that if something happens to me, he would never be able to survive. He keeps saying that he is “never going to let me die,” but in reality… he isn’t in control.
It was so cold in Indiana. I can’t believe how cold it was there. It actually was -2 degrees without the wind-chill. Can you believe it? At least when we go to California, it is supposed to be warmer. I hate the cold.
At least the people in Indiana were so very nice. I did meet a few people there and they were willing to help me raise some money and pray for me. Any help that anyone can do is much appreciated, so having them offer to do all this was truly wonderful!
Wanna hear something hysterical? I can’t go through the scanners at the airport anymore. Whenever we travel on planes from now on, we have to call the airport prior to traveling because I cannot pass through the security system. When I pass through, it comes out that I am a “terrorist” and that I am “concealing” weapons.
I am so very bony since I weigh absolutely nothing that my bones are literally setting off the security machines. My dad places me in the body scanner and when the scanner looks at me, it comes back as if I have weapons and illegal devices on me. Yet, it is only my bones showing up. We literally had such a hard time getting through security both ways, which even forced us to miss our flight going to Indiana.
When we were coming home from Indiana, it literally took like 30 minutes to get through security due to this problem. We had supervisors coming over and everything. The supervisor ended up giving me her name and she had to make amendments to the rule in order to let me pass because otherwise I wouldn’t have been able to fly.
Well… I guess that is about it. I have written a lot and really not feeling well. My birthday is coming up. It is February 7th… so I am really hoping that I make it. I will be in California for SUPERBOWL Sunday. It should be very interesting because one of the teams in the game is from San Francisco. I am not a Football fan, but since I was going to be in San Francisco, I was hoping that the 49ers would be in the SUPERBOWL. Gosh… I bet San Francisco is really going to be “hopping” since they are. I wonder how we are going to have dinner because the bar is usually crowded as it is… I can’t imagine how crowded it is going to be with it being SUPERBOWL!!
My parents have been taking really good care of me. Dad keeps asking me if I want to go to Hopkins and/or Cali because even though he knows we really can’t afford it, he doesn’t want to lose me. But… I am trying as long as I can to hold on because I don’t want to cause any more problems for them.
As it is… I am supposed to have another surgery on Saturday, as well as another ketamine coma. So perhaps I will maybe feel better after that. I can hope, right? They are going to do some surgery on my spine and work on the L3 nerves because they are going to see if that will help with some of the pain and me collapsing with my legs. Hopefully it will because I am really suffering.
We have also been looking into getting a service dog. Since I am so very sick, I not only need help because I have a mobility impairment, but I need help in case I need “help” in an emergency since my disease is really shutting down my organs and body. I am extremely weak and I need help picking up items, turning on lights or getting the remote because I am so weak that I can’t always get off the couch/bed, getting the remote control, providing balance because I walk with crutches and when I get up I get very shaky and possibly can fall, etc. It would even be helpful to have the dog acquire the phone in case of emergency because I am so gravely ill. I have trouble breathing and I would definitely need in notifying HELP if needed. There are plenty of that I am so very ill that we don’t even know if I am going to make it through the day/night. This dog can literally SAVE my life. After all, not only can I not walk, but my organs are shutting down.
Well… as you have just read… things are really bad. I don’t mean to be a “crier” but as you can see… money is really a big issue right now. If you have any way of spreading the word that I need desperate help or a way of raising money… I would really appreciate it. I know you are very busy and have your own life, but I really don’t want to die. I was robbed of so much because of this disease (eating, walking, becoming a doctor, etc.), and I would really love to get the opportunity to do all these things that everyone else takes for granted. I never thought that my life would be like this. I was very smart student in high school who planned to be a doctor, a violinist, competitive figure skater, etc. I had planned to be a doctor so that I can help others, get married, have a family, etc. However, I was robbed of all this and it would be fantastic if I got a chance again to do this.
So… If there is anything that you can do, I would really appreciate it. I have tried so many ways to get help, but none have really worked. Any help that you can do would be very helpful and much appreciated.
Until Next Time.