Just wanted to write and update you to the very latest because things aren’t going too well. I want to let you know that I am out of surgery, which is really good, but unfortunately I have some bad news to tell you.
As promised, I am writing to let you know the absolute latest of what is happening. I went for the surgery and the surgery was very long. It lasted over 6 hours and ended up entailing repairing my jaw, osteonecrosis, fixing 11 cavities, and 1 root canal. It was extremely long and complicated.
Even before the surgery even started, we were faced with lots of problems. It turns out that a few hours before the surgery was supposed to occur, my jaw and bones crumbled due to the osteonecrosis. I knew something was going on prior because I saw a whole occurring, but I honestly thought that I would have made it into the operating room. But unfortunately, I didn’t make it. I was just thinking about surgery in the morning, and then all of a sudden the dead bone went. I had a huge gaping hole in my jaw and the nerves were all exposed. All this stuff was supposed to be worked on during the operation and yet, it all crumbled hours beforehand. We really had a crisis on our hands because not only did I have a gaping hole in my mouth, but I also had dead bacteria leaking into me.
The surgeon was very nervous about having the dead bacteria enter my bloodstream and body and therefore, he really wanted to contain it as much as possible. The goal was that when I went for surgery, everything would be taken care of and the surgeon would be able to contain the dead bacteria from spreading. However, now that all this stuff crumbled, I had all this dead debris being swallowed and as a result, I swallowed and spread the dead bacteria too. What a disaster. To think… the operation was only hours away too.
We thought about calling the surgeon, but at 1 AM, there really wasn’t much that he could do anyway. He would only say that he would take care of it when he saw me in the morning anyway. So, we decided on letting the surgeon sleep so that he wasn’t tired during the surgery and called him first thing in the morning to give him a heads up. After all, we didn’t want a bushy eye surgeon in the operating room!
Well, after we called the surgeon, they advanced the time of the surgery 2 hours because of the circumstances. I guess 2 hours was better than nothing, right? Anyway, it was a very long and complicated surgery. Like I said, they did massive amount of work. They had to do work on my jaw, the osteonecrosis, filled 11 cavities, took care of 1 root canal, and some other things. They also discovered that the roots of my teeth are even coming through on the palate of my mouth. So it is not just bones coming through, but roots as well. It was a real mess inside. My dad was getting really nervous because it was taking so long. From start to finish, I was under general anesthesia for over 6 hours.
When I started to wake up in the recovery room, I had such a bad reaction because my autonomic dysfunction really took off. It turns out that because they had to do so much work and because I was bleeding so much, they had to give me lots of fluids in the OR. In fact, I happened to gain 8 pounds just in fluids, so you can imagine how swollen I really was. Well, as I have said in the past… any bit of liquid consumption that is above my “normal” requirement that my body feels is “normal” triggers off my autonomic dysfunction. It is really annoying because everything basically triggers it the autonomic dysfunction off and when that happens… it is absolutely the worst!
So like I said since I was given so much fluids in the OR, the autonomic dysfunction went haywire and I was breaking into cold sweats, pain, etc. I kept sweating profusely and other symptoms were occurring. It is the absolute worst thing that can happen when this occurs. I ended up tearing off the hat that they made me wear in the OR because I just couldn’t cool down. That was another problem I was having because of the autonomic dysfunction. I kept going from being unbearably hot to incredibly cold instantaneously.
What time we had in the hospital! I had an incredible team on top of me, but unfortunately, they were up against a very complicated problem with me. My blood pressure kept dropping very low and my pulse was in the very low 30s. The machines kept beeping because of this warning.
They had given me a PCA machine in order to help with the pain and the team was also given special medication that they were supposed to give to me if they ever thought that I was in significant distress since my blood pressure and pulse were so low. They were really afraid of the pain meds suppressing my rates even more and as a result, they were scared that they would drop even more. So they had medication on hand to counteract the meds being given just in case.
Nothing was helping with the pain though. I was in so much pain and it was totally out of control. They gave me Dilaudid and it wasn’t doing much. So they gave me Torredol, which helped a bit. But I was in astronomical pain. I desperately needed help! I was in so much pain, but they also had to be careful because my heart and respiration rates weren’t doing too good.
I was so scared and in so much pain. Thank goodness that my dad stayed by my side. I felt so bad for him because all he had was 1-hour sleep. He tried anything and everything to keep me entertained and to keep my spirits up. He tried making me feel better too. But my dad hates just sitting around. So instead of just sitting and doing nothing, he thought it would be funny to snap pictures of me because my hair looked horrendous because it was sticking up from the autonomic dysfunction and because I kept having the sweats like you wouldn’t want to believe!
After spending some time in the hospital, the doctors released me out of the hospital because they said that there really wasn’t anything that they could do. They were not equipped to handle my condition, as I was too complex and complicated. In addition, they were really fearful of what was happening to me. They gave us some really bad news and told us that we really need to get help immediately or I am going to die soon.
We knew that I was sick and suffering, but we honestly didn’t know things were so bad. But, by going for this surgery, we learned that things are really horrendous and unless something is done and done quickly, I am not going to make it much longer.
I really need medical treatment and a miracle immediately. I just found out that besides the latest news, which was that I was in the early stages of having liver failure, I am now suffering with having my lungs and heart really failing now too. They said my respiration is really bad and in fact is in the single digits. Respiration rates are supposed to be above 20. But mine is less than 10. That shows that I am barely breathing and when I do breathe, I am taking very shallow breaths. It is causing me to have a very hard time talking and that is why a lot of people say I speak very low. It is also the reason why my carbon dioxide levels are elevated in my blood. I cannot get enough oxygen into my cells. I’m filling up with water and fluids in my lungs and therefore, I am aspirating like crazy and having a hard time breathing too. Even when I cough, I cannot clear the secretions out of my lungs. When the doctors listen to my lungs, they said that they sound like “crap!”
In addition, I found out that my heart is really failing me too. My pulse is very low, as it is only in the 30s and my blood pressure is next to nil. Because my heart isn’t doing well and pumping sufficiently, I am filling up with fluids. That is partially why I am filling up with fluids in my lungs, which I just described. I am also having a lot of edema in my legs.
When the doctors started telling us how bad I have gotten and the latest news, my dad kind of didn’t want to hear it. He was kind of in denial at first by saying it was the pain medications causing all this because pain medication is known to cause respiratory suppression and decreased heart rate. However, the doctors then explained to him that it is true that pain meds do cause this, but what I am experiencing goes far beyond that. After my dad was told this, there was no talking to my dad for the next couple of hours. He was totally distraught and in disbelief. I never saw anything like it. I never saw my dad act like that. He was so quiet and wouldn’t say anything. He has always been my superhero and unfortunately he couldn’t help this situation.
I desperately need a miracle. The doctors said that I desperately need treatment and to seek my medical team at the best hospitals that are able to handle my condition. They said, “I really need to get to either the Mayo Clinic in Minnesota (which would probably be the best) or Stanford Medical Center in California or Hopkins Medical Center in Maryland as soon as possible.” However, the problem is that all these places cost money, which is something we are kind of short on. These hospitals (especially the Mayo Clinic) do not take our insurance and we have to worry not just about traveling expenses, but the cost that we are going to accrue with just being there in addition to all the hospital costs (which if we go to the Mayo Clinic especially would be all because we are not covered). Yet, these hospitals are like the only hospitals that can handle me in the United States and I desperately need to get to them now if I am going to live.
I desperately need to have tubes put in me as well as to have the multivisceral transplant (stomach, small and large intestines, pancreas, liver) and they can only be done at these hospitals. However, it is extremely expensive to go to these hospitals and we cannot afford it on our own. Therefore, we are pleading and begging with you to please donate or please spread the word that donations are very much needed because I desperately need to get to these locations to seek medical treatment. We have paid for my disease for many years, but the well has to dry out eventually. Despite all the cuts we have made, we can no longer pay for all this on our own. Please… if you can… please donate and please spread the word that donations are very much needed because my life is literally depending on it. I am really suffering and walking a very fine line.
We have been thinking of various ways of raising funds, but if you can think of any ways, please email me at email@example.com and please let me know. If you can think of any way of raising money, I’d appreciate it. I was thinking about giving out AWARENESS bracelets for my cause to everyone who donated. What do you think? I am really reaching for help, so any feedback would be much appreciated.
So… that is the absolute latest. I am in so much pain and really suffering from the surgery. Not only am I battling with the actual pain from the surgery, but from the autonomic dysfunction that it has stirred up. I keep wondering what I did that started all of this. I keep remembering times when I was younger and able to eat and drink whatever I want. Now I cant eat or drink anything because my body rejects everything and it triggers off the autonomic dysfunction. I suffer in excruciating pain 24/7 with the most innocuous touch causing me the most severe pain. Never did I ever think my life was going to end up like this. I keep thinking that all that I did in my life growing up (all my studying and dreaming of becoming a doctor), all my ambition, all my dreams were all wasted because nothing has amounted from all my hard work growing up or all that I experienced and worked for. When did my body start this? I feel like it just happened overnight! I really don’t know how much longer I can take of this.
Sometimes I just wish I can close my eyes and move on because of all the suffering that I am undergoing. I can’t take the pain and suffering anymore. I hate what is happening and I hate what I am doing to my family. It isn’t fair to them. They have given up too much and they certainly don’t deserve it. They are in so much debt because of me and can’t afford diddly. They haven’t been out to a restaurant for dinner in a long time because I can’t go out and eat, we haven’t been on a family vacation in over 8 years, we don’t do anything for fun, etc. They have literally given up their lives and have been staying confined in the house for the most part (besides working like hounds trying to get whatever money they can bring in) and it isn’t fair to them. It isn’t fair to me anymore to have to undergo this torturous pain physically or emotionally. I hate not only having to feel this most unbearable pain 24/7 that I don’t get a second of relief, but I hate watching my life like this and just continue to deteriorate. I hate watching others move on and feeling alone, and as the song “Dust in the Wind” goes… I hate watching all my dreams pass before my eyes with curiosity. But then again, I am just dust in the wind too and I will disappear as well because all that lasts forever is the earth and the sky. I just don’t want to disappear until I have experienced all that I have set my sights on, as I have such a laundry list of things that I have not yet accomplished and want to still do!
The holidays are just around the corner and the best gift I can be given is a chance to have my life back. Of course that is dependent upon donations and miracles so if you can please donate, spread the word, and please say a prayer… hopefully my holiday wishes will come true! If I don’t speak to you beforehand, please have a wonderful Thanksgiving! Even though I will not be able to enjoy the wonderful foods that everyone enjoys on that special day, I will be especially grateful that I will be able to spend the day with my family!
Well… I will keep you posted and let you know all that is happening. Please continue to pray!