Now that I have finished my appointment in Washington DC, I finally have all the information that I need to share with you. I am writing to you to not only inform you of all that is happening, but to let you know that I didn’t receive such “good” news on my trip to Washington DC so that I can go to the Georgetown Medical Center.
As I am rapidly deteriorating and suffer from rare life threatening illnesses, I proceeded to come to Georgetown in hopes that they would be able to have some answers and some ability to help me. Since my entire body is shutting down, I am in need of a multivisceral transplant, which incorporates reeving a new stomach, small intestine, large intestine, and pancreas. It is a very rare and risky and dangerous transplant, which only 6 hospitals in the country perform…. Georgetown being one of them. This transplant is considered the most dangerous of all transplants and only about 100 of them are done per year. But when your entire GI system has shut down and you only weigh in the 60s, you really don’t have a choice.
I am rapidly deteriorating and that is why I came to Georgetown. I came in search of hope that they would be able to save my life because I am really not doing so well. In fact, I really must say that I am doing worse than ever. Not only is the pain totally out of control and I suffer every minute of the day and never get a break, but I cannot eat, go to the bathroom, or even function. Like I said before… I only weigh in the 60s and I am basically having my body shut down organ by organ. I have a BMI that is totally unheard of and it is a miracle that I am still alive.
I need desperate help. When I met with the doctors at Georgetown, they agreed that I needed help ASAP. When I saw the transplant team, they agreed that I needed a transplant as soon as possible. However, it has gotten to the point though that I am currently too sick to survive the transplant and therefore, they said that they have to “improve my chances” if I am going to get the transplant. It really stinks because without the transplant I will die, but I can’t get the transplant because I am too sick currently to get it.
I couldn’t believe the news that I received because I am at the point where decisions really need to be made. The doctors literally said, “I’m hanging on by a rope and I’m literally going to die.” They told me that am extremely fearful for my life and how the simplest thing can kill me. The simplest operation or the simplest cold can easily kill me according to the doctors. Therefore, they said ball is in my ballpark, as I need to make a decision as to whether I want to hang on and ‘try’ or just call a ‘quits’ and give up. I do know that I came this far and I really do want to get better. So since I hung on this long, I told the doctors that I am planning on holding on for the long haul… at least for now. I just don’t know how long I can make it because my body is just breaking down and I really need something to be done.
However, the doctors said that if I were to have the transplant right now, I would be dead within a week because I am not strong enough to survive the operation or the immunosuppressant drugs that need to be taken afterwards. They told me that the immunosuppressant drugs can take someone that is healthy down, but in my case… it will easily kill me. On the other hand though, we really need something to be done because my body is really giving out.
My body has been really doing things that I never have experienced. According to the doctors, the reason why I am having all these new severe problems more than ever such as the severe edema in my legs (even when elevated), the fluid in my lungs, the night sweats, the extremely low body temperature, etc., is because my body is shutting down. They said that my heart is at the point where it is now suffering on top of everything else and besides my whole entire body and organs shutting down, my heart is now shutting down as well. Therefore, if something isn’t done quickly, they are fearful that something is going to happen to me because like I just said… my heart is suffering tremendously now.
My heart is now at the stage where it is suffering more than ever right now and it is at the point where it is shutting down. All the nutrients and survival mechanisms that my body has is going to my heart to try to keep it going. Therefore, my entire body is just simply breaking down and failing me faster than ever. They said that is why I am getting the edema and the extremely low body temperature and can’t regulate body temperature, etc. In fact, lately I have been having a hard time regulating my body temperature as I go from not being able to warm up to suffering from severe hot flashes. However, when the doctors took my temperature today at the hospital, they literally freaked out because my body temperature was only reading a maximum of 95 degrees, which is basically unheard of.
The doctors said that I was the sickest patient that they have ever seen in their lives. Not only was I suffering from an unbelievably low body temperature, but also my weight and BMI is basically unheard of. They said it was a miracle that I am still alive. They said that I am in the extreme dangerous zone and unless something is done soon… I am going to be up the creek. They did agree that I needed the transplant like I said, but they said I would never survive it because within 1 week I would be dead. Therefore, they said that the first thing that must be done is that I must be placed again on TPN. I have been on TPN in the past twice and unfortunately it has failed me. However, even though it hasn’t worked and has only given me complications, I must have it done again because it is crucial that I gain weight and get stronger prior to the transplant. They want to put like 25-30 pounds on me prior to the transplant.
In addition, they see how sick my GI system really is, as my entire GI system is paralyzed. They see that the slightest food and drink will send my system into extreme havoc. It will cause so many problems such as extreme pain and bloating. Therefore, they said that they do not want me to eat or drink ever again. They said that my organs are basically “done!”
I can’t believe that I am 31 years old and my organs are basically done, and the doctors are telling me never to eat or drink again? This is just one more reason why TPN is needed because of course you can’t stop eating and drinking without being on it.
I have had TPN in the past and it has failed me. However, the doctors told me that when I had the TPN restarted again, it would only be at a rate of giving me of like 300 calories a day (if that much). I know that doesn’t sound like a lot and it sounds really impossible for someone to survive on that amount, but the doctors insist that they are starting me out on this level for two reasons. First, they need to start out really slow because it could really cause more harm than good and do more damage than anything else if you start out too fast. Secondly, the doctors insisted that I am only probably absorbing that amount currently now anyway. They said that even though I might be eating more than that, I am not ‘absorbing.’ Nothing is being processed or absorbed, but rather just ‘sitting’ in my GI system and rotting.
Therefore we now have to make plans ASAP to get this TPN done because time is of the essence. I need the TPN because not only do I need it so that I can get it so that I can get the transplant, but I need it because my body is shutting down and because it is really shutting down my heart now as well, which is the most important organ of them all. So now everything is chaotic because we need to find the right hospital to have this procedure done because it isn’t so simple to have done because the hospital has to be able to be able to deal with the TPN, my medical history, my illnesses, and able to give me ketamine. Not many hospitals are able to deal with my complicated medical condition and able to give me ketamine around the clock as well.
Since there are very few hospitals that can handle me, I will probably end up at the Mayo Clinic in Minnesota or the Stanford Medical Center in California. However, even though these hospitals might be the best for me, it will also be a hardship for us because they aren’t located exactly ‘locally’ and therefore it will be extremely expensive as well because it will force my dad to have to take more time away from work, which means no income coming in to pay the bills. We also have to worry about not only paying the bills, but the traveling expenses as well. So, we really need as much help from others as possible so that I will be able to get the appropriate treatment that I need. It really stinks that when it comes down to it… it always comes down to focusing around money.
In addition, the doctors said that I need not only to get the TPN in place as soon as possible, but I also have to get the obstruction/twist in my colon taken care of as well. However, it is a catch-22 because unfortunately it is a “no win” situation with that because I emergency surgery because of the twist in the colon/obstruction in the colon as I can literally die from it. However, it is extremely dangerous and life threatening for me to go for any operation because even the most simplest operation can kill me as well. So I am really at jeopardy if I leave the obstruction or take it out. I can’t leave it because it can kill me and yet if I have the operation… they are extremely weary that I won’t survive the operation. After all, they even said that even if I get a simple cold, I probably won’t survive.
So… everything is just so chaotic right now and I have no idea what is going on. We really have to make decisions though and make them quickly because time is of the essence. I am really scared and I really don’t want to die. But I don’t know what is going to happen because I don’t know if there is going to be a light at the end of the tunnel.
When we met with the team of doctors, they not only spoke with us and examined me, but they also took pictures of me. They said that they liked to keep photos to document everything and so that they can record everything. They also told me that they were also extremely glad that they finally got to meet me because they said that they have been so very busy these past couple of weeks reading all about me because I had a volume of records for them to read. They said, “It was finally nice to meet the celebrity because we have learned about you for so long!”
In the meantime… we have had an interesting time in Washington DC. I always have a great time when I am with my dad. My dad always tries to make sure that even though I am sick and we are traveling for “medical” reasons, he always tries to make sure that I have as good enough time as I can. He always tries to put a smile on my face no matter how bad things may look. When we go away… it is always an experience. We have so many great experiences together. Not only do I get to experience some great things with my dad, but also I get to be with my dad and further bond with him. I am so lucky to have my dad as my dad. He is not only my dad, but also my hero and very best friend. If I didn’t have him in my life, I certainly wouldn’t be here today. He certainly is the main reason why I continue to push on. People say that if something should happen to me, my dad would never survive. There is nothing that my dad wouldn’t do for me, as he tries to do anything in his powers to get me well, and it absolutely kills him that he can’t make me “well” and take this all away.
This was the first time my dad was ever in Washington D.C. I have been here in the past on school trips, but I don’t really remember much and it was many years ago. Plus… it is totally different going with school and then going on your own. So basically my dad and I were two lost souls in a huge bustling city. To start our trip off … we happened to arrive right after there was a shooting at the U.S. Naval Yard. Thankfully we arrived at the Baltimore Airport because all the other airports in Washington had their planes ‘grounded.’ We didn’t even know what was happening, but when we were waiting to depart from New York, I was receiving texts from friends alerting me to the situation. We couldn’t believe that there was a huge shooting occurring at the U.S. Naval Yard, which was literally 2 miles away from where we were going.
Thank goodness by the time we arrived that things quieted down. We thought that it was going to be really bad with traffic and everything, but it wasn’t that bad. It was certainly an interesting day though because that night we kept watching the helicopters keep circling and flying over the Naval Yard, which was right by the Washington Memorial. It was definitely an experience. Of course since we were right in the center of the action, it was all that was on the television.
Our hotel was in an extremely great location because it seemed to be in the center of everything. It was basically located right next to the White House and when you looked down the street, you could actually see the capital. In addition, when you looked out the window of the hotel, you could see Washington’s Monument, Lincoln’s Monument, and Jefferson’s Monument. It really was great because since I couldn’t really ‘sightsee’ because I couldn’t really move because I was too ‘sick,’ I was still able to see a lot. I was really glad that I got to show my dad so much even though we only got to see them at distances.
After resting awhile in the room because I was very sick from the trip, as it takes a lot out of me to travel, we decided to go for a little walk. Like I said, our hotel was located in a great location and there were plenty to see in the area. In fact, when we went for a little walk, we saw a white building that was blocked off and gated about two blocks away from the hotel. When we saw the building, my dad originally told me that it was the White House. However, I wasn’t quite sure that he was right because it didn’t look too extravagant. Yet, he told me it was probably because it was the ‘back’ or something. So we took pictures and really thought that we had saw the White House as of that day. It wasn’t until the very next day that we realized that we were wrong.
The next day we were going to the White House to meet a friend that I grew up with. I haven’t seen this friend since High School and I was so fortunate that she was willing to meet me and show me around the White House and such. It was so great to see her because I haven’t seen her in so many years. She has the best job! She actually is a lawyer who works in the White House for the President. So, besides getting to see her, we were fortunate that she was willing to give us access into the White House because I never have been in the White House and it was something that I always wanted to do. They stopped doing tours because of budget cuts, but thankfully I was able to get a tour because of my friend.
My friend wanted to meet up at a specific location. However, it wasn’t until we met her that we realized that the original “White House” that we went to the day before was actually the U.S. Treasury. When we went there first because we thought that it was the White House, we then saw that it was actually not the White House and the U.S. Treasury instead. I can’t believe how I believed my dad on this. My dad even took out his money and said “Oh yeah… it does look like the building on the money!” In fact… when we did get to the actual TRUE White House his response to it was “Now this is the White House because this House is the Whitest of all the houses even though they are all white.” I can only laugh at things my dad says.
It was great to meet up with my friend. What a great overall experience it was to actually get into the White House. It was only appropriate that we went to the White House today because today was known as CONSTITUTION DAY. We all got ID tags to wear and I only wish that I was able to keep it. It would have been a great souvenir, but of course I had to hand it back.
Security to get inside was also very intense. Not only were there the ID checks twice and the metal detectors, but they also had an area where you stood and drug dogs sniff you. Of course when it was my turn and the dog sniffed me, the dog kinda went a little crazy. Gee I wonder why… could it be because I am on so many drugs? I am like a little druggie with all the drugs that I take… the ketamine, morphine, methadone, dilaudid, etc. No wonder the dog kinda went crazy with me!
I got to see things that I never knew existed inside. This was definitely something I will never forget. For one thing… I would never think that the people that worked for him would have their won gym. I really wanted to get a picture of it, but never got a chance. I guess with all the hours they put in….They need it to relieve all the stress.
I also got to go into the Vice President’s wing and office. Unfortunately I didn’t get to spend long though because they said that they were expecting Biden’s arrival at any moment. I can’t believe that we just missed the Vice President. I only wish he would’ve arrived while we were there. I tried to walk out slowly to see if we could catch a glimpse of him, but of course he never showed up. There are so many entrances also into the area, he could have came in through any of the entrances even though I thought the would probably come through the entrance we were walking out of.
My friend also managed to give my dad and me official M&Ms from the White House. They are really cool. They are in boxes that are stamped with the presidential seal on one side of the box and an M&M holding an American flag on the other. In addition, the M&Ms are red, white, and blue. I think they are so special and cool. I don’t know if I want to eat them or save them. They are something that no one else has.
I really had an amazing time at the White House. When we were leaving, I of course had to stop at one of the souvenir shops right outside. I wanted to get my mom a souvenir because she wasn’t able to come with us. I also wanted to get BO, which is the Obama’s dog. So I got myself the big Bo and I got my mom the little Bo. I also kept telling my mom how I was going to take a pen off the president’s desk when I went inside, so I bought her a pen while I was there as well. I was going to pretend that I got it off his desk for her.
At this particular gift shop, you were able to take pictures of either standing behind the presidential podium or sitting behind the president’s desk in the Oval office. Of course it wasn’t ‘real’ but it looked just like it and I thought it was a really neat idea. So I took the picture behind the podium as the being the future President, and my dad took the picture behind the desk as being the current President.
Well… I guess that appears to be all. I think I wrote a lot. I am leaving tomorrow to go home but like I said in the beginning, we really have a lot to plan and think of because time is of the essence and I really don’t have a lot of time left. I really need all the support and prayers I can get because everything is touch and go right now. I want to definitely thank you all for being behind me and supporting me. Please continue to spread the word of my website because donations are definitely needed and are extremely appreciated. Until Next time…