Just want to give you an update as to what is happening because a lot has happened and in a few hours I will hopefully be under anesthesia and in surgery.
I am writing to let you know the very latest because so much is happening. In a few hours I will hopefully be undergoing another surgery that will hopefully be successful. I have to leave in a few hours for the hospital and since I can’t ‘rest’ because I am so nervous, I figured I would spend this time updating you on all that has been happening.
As I just said, I have surgery in a few hours. I am extremely nervous and scared. But thankfully it is for a change actually “local.” However, even though I am actually having surgery in the area and I will be in a hospital close to home, my dad will be staying right by my side throughout the entire time. I am so thankful for my dad because he is so amazing. I can’t thank my dad enough for all that he has done for me because I definitely would never have made it this long or made it this far without him. He is not only my “dad,” but he is my best friend. He is also my “Superman,” my knight and shining armor, and the person who made me who I am today!! I can never thank him enough. I only hope that he will be around to see the day when I am “cured” and I become a doctor so that I can help others so they don’t have to suffer like I do.
I am heading to the hospital today to have surgery on my jaw and teeth, as I have severe osteonecrosis and a massive infection going on. I am rapidly deteriorating and dying and I really need to get to Cleveland Clinic so that I can have the necessary lifesaving surgeries to save my life. I need to have heart surgery because not only do I need ports placed in my heart because of TPN and because they need central and emergency access to my heart for the upcoming surgeries, but I also need to have my colon taken out and have a multivisceral transplant. Yet, these surgeries in Cleveland cannot happen until this surgery that is taking place today happens because I am suffering with a severe massive infection. The doctors have to try to remove the massive infection before they even try to do these very risky and dangerous surgeries.
It appears that since I am doing so horribly and since my entire GI tract has shut down that I am spilling toxins into my bloodstream, which is poisoning my entire body. The toxins are poisoning my organs and brain and essentially shutting them down. Therefore, I have developed a massive infection in my jaw because I can no longer “fight” anything anymore. What is happening in my jaw is just a reaction to what is actually occurring throughout my body. Therefore, it is imperative that this infection be taken care of as soon as possible because I desperately need the other surgeries at the Cleveland Clinic as soon as possible.
Today’s surgery is going to be one massive surgery. The surgeon is going to have to remove part of my jaw, teeth, and even remove nerves as well. I will also be having metal being placed into me. I am so worried that I am going to wake up looking like a “Jack O’Lantern!” This disease has taken so much from me such as my social life, eating, walking, a career, money, happiness, etc. and I hate to think that this is now going to take away my “smile” too. I don’t know what I will do if I wake up and I look even worse than I do now because I already look horrible. To think… I was one time pretty. Now I just consider myself an “ogre” and I won’t even put up a picture without airbrushing it and fixing it up beforehand. I am nothing but an emaciated skeleton and I have no muscle tone anymore. My skin literally just hangs on my protruding bones because there is no muscle tone anymore.
I just hope that everything will go “ok”! My dad will be with me during the entire time. He is even spending the night with me at the hospital because I can’t be treated like a “regular” or typical patient. I am a very complicated person and therefore, I need special attention. For example, during the surgery, it will probably be standing room only. There is going to be at least 2-3 anesthesiologists in the room and other specialists as well. I even can’t get an IV like a normal person. The last time I had surgery, I ended up gaining 8 pounds on one bag of IV because they ‘pushed’ it and it ended up causing further problems because it set off the autonomic dysfunction.
I need this surgery to take place so that I can get to Cleveland Clinic as soon as possible. If all goes according to plan, I have surgery in a few hours. I will of course be admitted and then I will have surgery again on Friday to “clean out” my colon like I always do. We are then supposed to be leaving for Cleveland on Tuesday, September 23rd. However, this is as long as if we have the funds behind us, which as of now we don’t.
That is why it is so important to get all the help that we can get. I have so many upcoming procedures and have to travel to Cleveland and everything that it is going to cost a lot of money. However, we don’t have these funds and unless we do, we will not be able to do all of this needed stuff, which is needed to save my life. So if you can please do anything to help… whether it is to do a fundraiser, spread my website, saying a prayer, etc. I would really appreciate it. I am really rapidly deteriorating and I am basically in “survival” mode. According to doctors, I am not going to make it much longer unless something is done and done soon. I know that I have defied medical odds before and I have existed this long, but I know also that my luck in that area has also ran out. I have been in constant contact with Cleveland Clinic even though I am not there at the current moment. The doctors say that time is running out and I need to get there quickly.
When I went to have pre-surgical testing at the hospital for this upcoming surgery, they saw how bad I really was. Even though the hospital had an idea about my condition because they had a meeting prior to me coming about me and my condition, they even said that they didn’t really think it was this bad or understand it completely until they actually saw it.
The doctors were really shocked when they saw how swollen and bloated my stomach was. It is also hard as a rock. When Cleveland Clinic heard about it, they were not ‘happy’ with this news because they said my body is failing and need to get to them ASAP for surgery because time is running out. It has also been getting even more difficult to eat because nothing is going down anymore. Since my GI system is essentially ‘dead’, it doesn’t push anything down and through anymore. Therefore, it constantly feels like my entire esophagus has something in it.
Well… I just wanted to really alert you that I have surgery in a few hours. I just hope that everything will go ok. I told my parents that I hope the Toothfairy gives me money and bonus bucks too because of all that is happening. My parents laughed over that.
I really hope that everything goes smoothly. It is getting time to leave so I am going to get going. I want to rest up for a bit. I had a busy day today already because I had my dad’s birthday today. He turned the big 61. I only wish I could have made his birthday better for him and got him all the presents that he deserved, but unfortunately it just wasn’t possible. My father is the absolute BEST and deserves to be treated like the ‘king’ of his caste. Yet, instead of sitting back, relaxing, and enjoying his life… he is working harder than ever and trying to do as much as possible to get me well.
I will write again after I know more. Please say a prayer for me and please continue to share my website. Thank you for all your continued support and encouragement.