Just wanted to let you know that I am here in California. I finally made it. I just wanted to post and let you know this because I told you that I would keep you up-to-date with all the latest. Plus… I am really nervous about tomorrow since it starts all my appointments and the reason why I am here. So I figured that perhaps doing some writing might make me feel a little better and calm me down.
Before I begin, I just want to let you know that I had a huge surprise in the mail the other day before I left. I had written a letter to various people in search of help. As I suffer from a rare and life-threatening disease that poses a very heavy financial burden on my family and me, I cannot afford further treatment without the help of others. We have made “cut” everywhere, even including cuts in treatment and such, but they are not nearly enough to cover the treatment that I need. This disease is very costly, as I am on a great deal of medication, see various and numerous doctors, have plenty of procedures, etc. I also have the travelling expenses such as the gas, hotel, parking, etc. I not only see doctors in Manhattan, which is very expensive in general to park in and cost a lot of money to get to because of the gas, but I have to travel to various states to see top specialists because my disease is so complicated and complex, and not a lot of doctors are aware of my situation and knowledgeable about it. I even go to California and Florida to receive treatment and therefore, it is extremely expensive because we have to “fly,” pay for a hotel, pay for a car, and all other expenses associated with “going away.” We also have to worry about the amount of money that my father loses by taking me to appointments, especially when we travel and are away for a while, because this is all time away from his business. When my father is not working and he is away from the business, it is money lost… money, which we desperately need.
Even if the treatment/procedures, doctor visit, and medication are covered by the insurance, they are never covered 100%. As a result, there is always the copayment that I have to pay. I see so many doctors, on so many medications, have so many treatments/procedures that the copayments quickly add up. For example, just in medication… I take over 50 pills daily, which entail taking injections as well. We easily spend over $25,000 a year just in copayments.
In addition, not all my medications, doctors, treatment/procedures are covered by the insurance. Therefore, not only do I pay the amount for the copayments as previously stated, but I also have to pay the entire amount that they cost when they are not covered by the insurance. I am even forced to get medication out of the country and therefore, they are by no means covered by the insurance either. So… you can just imagine how expensive pay fully out-of-pocket for medications, doctors, treatment/procedures can cost.
As a result, I desperately need help. I am suffering from a life-threatening disease that needs treatment and without the help of others, I fear I won’t be able to continue the treatment that I need. Not only do I require medication, seeing doctors in the NY area, and treatment in the New York area, but I also need to be able to travel to California and Florida to receive treatment there. I need to have surgery in both places. I need to have brain surgery in California, as I suffer from a tumor on my pituitary gland, which is extremely dangerous and causing me a lot of harm. I also suffer from severe gastroparesis, and I am down to weighing in the 60s. I desperately need a radical and risky transplant that only 8 hospitals in the United States perform. I need a new small intestine, large intestine, stomach, esophagus, spleen, and pancreas. It is extremely dangerous and has the highest rejection rate of all transplants. However, it is my only hope of survival even though it is so very dangerous. Therefore, I really need to get to California to have this performed.
In addition, I suffer from an underlying neurological disease and autonomic dysfunction that desperately needs to be treated. There is no known cure for this illness at this time, but the best hope that I have is a ketamine coma out of the country. The amount of ketamine that I would require to hopefully put me in “remission” for the neurological disease is way to great and is not FDA approved in the United States. Therefore, I am waiting to be sent to Santo Domingo so that I can undergo that very heavy, risky, and intensive ketamine coma. I have to wait for the IRB to approve it though. In the meantime, I have been undergoing ketamine comas in New York, but they are nothing compared to the ones out-of-the country. Therefore, I am waiting to go to Florida because at least it would be a more intensive coma than the ones I receive in New York, but it still will not be nearly as intensive as the one I receive out-of-the country. The coma in Florida and the coma out-of-the country are not covered at all by insurance and therefore, I will have to pay all out-of-pocket for it. It will easily cost me over $100,000 for both.
So… as you can see… My disease is very expensive. But, I really don’t want to die, as I am too young to die. I have so much to live for and I still want to be a doctor and have so many other things that I still want to do. I was robbed of my life and never really got to live it and therefore, I really want to get better so that I can “live” that life I never got that opportunity to do so. However, I know that it won’t be possible without the help of others as we can no longer afford it. I hate to be a “crier,” but we really need help.
I have tried countless ways of trying to get help. I have set up websites, wrote letters, been featured in local newspapers, etc., but nothing “BIG” has really come about. It works for a few days and then quickly dies out. I really need to be featured in a bigger spectrum of the media such as on television or something. Therefore, I tried writing to everyone in the past as my one of my last attempts to get help. I tried writing to all the news programs, talk shows, etc. I even tried to write to various famous people in hope that they would be able to help me. But, nothing really came back as being successful. It really bugs me that I can’t be featured on TV or anything. I see other people getting featured and I am like “how did they get on TV and why can’t I?” I can’t understand it because I need so much help, and yet I see stories on TV that are not as tragic or important as mine. I guess it is like the saying goes “It isn’t what you know… it is who you know!”
That was part of my last “ditch” effort kind of because I am too weak to really continue to be on “top” of things or to “push” for things. But, I must say that I was really surprised to get one response back… especially since people laughed at me when I wrote this person the letter. I tried writing to various famous people including the President. I was even so desperate that I wrote to Queen Elizabeth, the Queen of England. People thought I was “crazy” to do so because they thought that I was wasting my time. But guess what? I finally got a letter back from her the other day. Can you believe it? Out of all the people I wrote to, she was one of the very few that contacted me back.
I couldn’t believe that I received letter from Queen Elizabeth. It came right from Buckingham Palace. Even though it didn’t have money in it, it was still like receiving $100. In the letter, she apologized for not getting back to me sooner but it was the year of the diamond jubilee and she has been very busy. She apologized for not being able to donate, but she wished me well and such. The letter didn’t have her signature per se, as it had the signature of her correspondent, but from what I learned… Queen Elizabeth never writes her letters. HER MAJESTY just dictates her letters and has someone else write them.
Well… let me now tell you how my trip is going. It is only the end of the first day, but what a day it has been. I really hate traveling because it takes so much out of me. I hate going away, but once I am there, it is a bit easier. However, one thing that really stinks is that I am away from my mom. I usually go with my dad, so it is really hard being away from my mom, especially when I go for treatments and procedures. When I am sick, even though Dad does a good job taking care of me… sometimes all I want is my mom. However, someone has to stay behind and hold down the fort, so it has to be her. Plus… it is too expensive to have everyone travel, so just my dad and me go. My mom and I spend so much time on the phone with each other and I am trying to teach her to FaceTIme so that we can see each other. She just loves when I go to California and I call her in the middle of the night because of the time difference. But… she obviously gets us back because she calls us in the morning for her, which is the middle of the night for us. Luckily… I don’t sleep so it doesn’t quite bother me.
But… we finally made it to California and this is the first time I am really “awake” and able to function. The doctors didn’t think I was even going to make it to California because of what has been happening, especially what has happened during the past few days. The other day I went to the doc and found out that my organs are failing me. I have so much “air” and “gas” in me and it is putting way too much pressure on my organs and spine. I knew that this was a problem a few weeks ago, but who knew that in 3 weeks that it could get so bad?
I wasn’t feeling too well, but who knew that it meant that all this was occurring? Who knew that my organs were really suffering and failing me so badly? Who knew that I was going to need emergency surgery? They did an x-ray and it was really bad. When they compared it to the x-ray taken 3 weeks ago, it was crazy how bad it had gotten. I am so tiny also… so it makes it even worse.
Due to my GI system failing me, I have too much air and gas inside of me. It is putting too much pressure on my organs and causing them to fail. They are worried that my colon is going to completely twist as well because once that happens, we will have a huge problem on our hands, as I can easily die. They are also worried about the pressure it is putting on my spine because my bones are paper-thin and they are always worried about me getting a life-threatening fracture because it can very easily happen. Therefore, the doctors wanted me to go to the hospital immediately to have emergency surgery to relieve the pressure because of the organ failure as well as the risk of something happening to my spine. However, even with the surgery… the air and gas will only come back because my GI system is completely gone. However, if something is not done and not done quick… even though it is temporary, I will be in total organ failure and I can have even more problems.
However, the doctors knew that I was going to California and how important it was that I got there. If I had the emergency surgery, I wouldn’t have made it. Plus, they wanted the doctors to see everything, as well as the doctors in California wanting to see, before anything was done. This way my “team” in California knew exactly what was going on and how to treat me. After all… I am awaiting a transplant and they need to know exactly what is going on. So… the doctors in NY gave me their pager numbers and told me to call them in case I couldn’t hold out and make it California.
Yesterday, I was really fortunate that the transplant doctor happened to call me from California. I was not expecting it at all, but I was really glad that he did. It is amazing how “outstanding” and “caring” these doctors in California are. It only stinks that I have to travel all the way across the country to see them. The transplant doctor wanted to know everything about me and wanted to know everything about my trip. He wanted to know what I have been eating, my weight, as well as the itinery of my trip as well such as when we were leaving and everything. I never heard of a doc wanting to know so much about you, especially all your flight info and such. But, it showed that he really cared. I spoke to him for a while. As this transplant is very rare and risky, I asked him if he really thought it was necessary to do it. He said that he was 99.99999% sure that it had to be done. He told me that I would be meeting with him Monday and the rest of the transplant team later on in the week. This is surely a huge procedure and a lot of things need to be done.
I wonder if this “hottie” doc is on my team. When we were here last time, we needed help finding our way through the hospital to get to an appointment. Not only did a doctor actually take the time to stop and help us, but he also actually brought us to the doctor’s office that we had to go to. In addition, even when he was confused about where it was, he actually took out his phone and called to find out where it was and such. He really went beyond the call of duty to help. I don’t know a doctor in NY that would have went out of his way like this doc did. Not only was this doctor really helpful, but he was sooooo CUTE. I know that he is a member of the transplant team, but I don’t know which one. I wonder if he is on mine because I will be GAGA over him.
Well… the only way I was going to make it to California today was to be heavily medicated. Due to my overall disease and how bad things have gotten, especially with the extra pressure, the doctors said that the only way I was going to be able to withstand the plane and trip was to be heavily medicated. Not only was the pressure causing my organs to fail, but I was getting intense spasms. I was also getting spasms on my spine as well because the air was putting pressure on that as well. So… they gave me extra meds to get me there because they knew how much extra pain I would be in on the plane. I have been in excruciating pain as it is, but with the altitude that we would be, it would be even worse. Even though the plane is supposed to be “pressurized,” it would really wreak havoc on me.
My dad was really freaked out though. He kept thinking that something happened to me because he didn’t hear a “peep” from me the entire time. I was literally unresponsive. I did what the doctors said, which was to overdose on medications. I am on really potent medications like methadone and morphine and dilaudid, etc. and therefore, they had me take a little extra in hope that it would “knock” me out for the trip. It was kinda a little risky considering my state… but it was honestly the best thing considering all the stuff that I was going through. They really didn’t think that I would make it to California in any other way because it was like an 8-hour plane ride I must say that even though I was heavily medicated and didn’t really say anything, I still felt a lot. I was in a lot of pain. I was just too tired, too weak, and just not able to really “complain.”
When we landed though, I couldn’t believe how fast the fight went. My dad was complaining how he couldn’t take it any longer. I mean… it was 8 hours on the plane and I would probably have been the same way as him if I was awake for every single minute and just sitting there. We didn’t have a video or anything. Usually my dad and I always watch a movie on the iPad, but we didn’t get a chance to do that. So… it was really slow for him. We started to watch a movie, but then my dad broke his earbud. By the time we fixed his earbud, the meds had kicked in and therefore, I was gone. My dad wasn’t going to put on the movie and watch it himself, so he basically just sat and stared at the seat in front of him for the next 7 1/2 hours. When we arrived, he was complaining and such. I couldn’t believe how “quick” it went. I was like “meds knocking you out really make a trip go quick.” My dad was like “I can imagine.” The only bad thing was that I don’t know what happened, but the trip really took a big toll on me and just as we landed, the meds wore off and I started to hit level 10+ with pain. It was like my body was hitting REVENGE for making it to California. Everything that was “masked” from the heavy dose of meds plus more was being hit on me as soon as we left. I thought I was going to die. I was hysterical.
I was in so much pain. I was like on level 10+ with pain and we really didn’t know what to do because I was so heavily loaded with meds before. We didn’t really know how much more meds I could take again because of the amount I had in my body before. But, with all the pain that I was in… I really didn’t care. They couldn’t even get me out of the airport. It was horrible. All this as we waited for the wheelchair too. It turned out that when we got to San Francisco, the people weren’t there to get me off the plane with the wheelchair. So, we had to wait. The guy at the terminal kept “bugging” them to bring the wheelchair and how I was waiting there. He must have called them like over a dozen times to come and they kept saying “5 minutes to 10 minutes wait.” Anyway… guess what? When they finally did show up… I just didn’t get one person with a wheelchair. As soon as one person showed up, I had a whole entourage show up. There were like 20 people that showed up with a wheelchair. When I was getting into the wheelchair with the first guy that came to get me, I couldn’t believe that they kept coming and coming. Even when we were walking away from the gate and going to the baggage claim, they were still going to the terminal. They kept asking what “gate” we were from and when he told them, they had to turn around. It was so funny. From not having one single wheelchair… they all came for me. But I was really lucky with the person who came and got me first because he was really nice and I enjoyed him.
Wanna hear something funny though? Listen to this. At the baggage claim, I was with the person that was pushing me. My dad had gone to get the baggage. My dad had packed the bags and I was unaware of what he actually did. Even when we brought the bags to the airport, I didn’t take a close look at them. Well… on all the previous trips, my dad had been very intuitive and tried to make it very easy to spot the suitcase when it came to the turnstile. Therefore, he put masking tape all over the handle because this way he would see it easily. After all… you know how many people have “black” luggage? I must say… even though it did sound stupid, it was helpful. But… apparently he wanted to make it more helpful during this trip because you know what else he did this time? Not only did he have the masking tape on the handle, but he put masking tape on the actual body of the suitcase as well. He put an entire strip on it. I couldn’t believe it. I had a feeling it was so he could ID the suitcase easily, but I wasn’t 100% sure because it was either that or he was hiding a tear in the suitcase without me knowing. But, when I saw the other suitcase have it too, I knew. What a dad!! Always thinking of something!!
But he wasn’t so smart because he didn’t know after all this traveling that the cosmetic bag was made so that it could slip on the handle and be carried that way. He has been tying it up on the luggage with the straps. I thought he knew this all along and when he did it this time, I was “Why don’t you just attach it through the pocket in the back.” My dad was like “It is a pocket… everything is going to fall out.” I then showed him that it wasn’t a pocket and in fact, it was the part that you slide the handle of another suitcase through so you could carry the cosmetic bag and luggage together. IT made it so much easier for him. He was like “Why didn’t you show me this before. It is so much easier.” I was like I thought you knew this already.
But… guess what else happened?? When he went to go and hand me my jacket because I had it packed in the suitcase, he had the luggage standing up. However, the way that he had it (before I showed him how to put the cosmetic bag on the luggage right) made it really heavy and it toppled over. However, there was a little kid (maybe 2 years old) right in front being a little pain in the ass to his mom. HE was having a temper tantrum and everything and his mom was even having a hard time controlling him. Anyway… the luggage then toppled over onto him and it was so funny. It did knock some sense into the kid though. I guess the kid got what he deserved. LOL. But my dad almost killed the kid with the luggage at the same time. LOL
But, while we waited though, I was in so much pain that I couldn’t even move too. So… my dad knew that we weren’t really going to get anywhere without giving me something else in order to dull some of the pain. Even though I didn’t really “feel” anything on the plane… the traveling was already wreaking havoc on me and making everything so much worse. Traveling really takes a HUGE toll on me and it was already beginning. So… even though we didn’t know how much meds I really could take, I didn’t care to be frank with you because I was in just so much pain. Therefore, we just took some more meds because I wasn’t going to make it otherwise. Even with these extra meds, I was in excruciating pain… but at least it was enough to get us out of the airport and to the hotel.
So… I was really out of it with the meds that I was in, but I was in so much pain as well. I thought I was not going to make it to the hotel to be honest with you. I have really been suffering from the pain. I just laid in bed sleeping and resting, and hoping the pain would stop. I have been so weak since we landed and couldn’t do anything. I was really bad. It was like my entire body just “shut down” or something because of everything. I couldn’t do anything and honestly… I really didn’t want to do anything. When we arrived at the hotel, everyone came up to us and talked to us. That is one thing that is nice about staying at this hotel… everyone knows us. But, to be honest… I really didn’t want to be bothered by anyone. I just didn’t want to talk or anything. I hope that they didn’t take it “personal” because I really wasn’t feeling well and even though they were trying to be “nice” and talk to me and such… I really didn’t want to be bothered. I couldn’t even eat… but of course my dad made me go and eat dinner. My dad said that I can’t afford to lose an ounce, so I had no choice but to go and eat. I really didn’t want to, but I had to other choice.
When we went to go and eat, I really wanted to go back to the room because I really didn’t feel well. I really thought that I was going to have a “seizure” or something because my body felt like it was “closing” up. I couldn’t believe what I was feeling. My body just felt like it was “shutting” down. It does that when it gets very cold and stuff. I don’t know if it’s protective mechanism or anything, but I literally feel my body shutting down and break into the shakes and such when I get really cold. It is like my body can’t take it.
The waiter came over and tried to warm me up, he raised the a/c and then tried to talk to me to get my mind off things. Everyone here knows us… so it was really nice. As we were sitting there, everyone kept coming up to us and talking to us… so it was really nice that they were doing that. But … I just wanted to be left alone. I told my dad that he was going to have to carry me back to the hotel room in the chair because I couldn’t move.
I am really nervous for tomorrow morning. I have so many doctors to see. I don’t know what to expect. I am so worried that they are going to “back” out or something. I am not just worried about myself, but I am worried about my dad. My dad has all his eggs in this one basket. He thinks California is the “miracle” that we are waiting for. My dad wants me to get better so badly. I know that if anything should happen to me. He would never be able to handle it. He would literally do anything to get me better. He even wants to “freeze” me so that I don’t die. At times when I am suffering, my dad says to me that he “wishes that he could take this disease from me and have it himself instead.” I tell him though that he would never be able to handle it. It is so bad this disease that he wouldn’t be able to handle a single minute of it. It is the worst. I don’t just suffer medically, I suffer physically, emotionally, etc. I never get a single second of a break. I suffer 24 hours a day, 365 days a year. I don’t wish this disease on my worst enemy. Everything that I have ever taken for granted like eating, walking, taking a shower, sleeping, etc. have all been taken away from me because of this illness. This disease is “hell.” In fact, doctors have said that “if hell was a clinical medical condition, it would be known as my disease.”
Well… gonna go and rest. In a few hours I start all my appointments. I am meeting with the brain surgeon, transplant doctor, and neurologist/autonomic doctor. I am really nervous. But… I will see what they have to say.
Well… until next time… I guess I will talk to you tomorrow. Thanks again for all your support and encouragement. I would never be able to make it this far without you. It is a long and difficult time in my life and without you, I would not have the strength to continue pushing. I can’t thank you enough. Keep your fingers crossed for me!