Just wanted to update you on the latest because got some really bad news yesterday. I also wanted to write because I wanted to let you know what is happening because it seems like things are going downhill so fast and I never know from one day to the next where I will be or what is going to happen. But even though things are getting really bad, I am still trying to hang in there as much as I can. Maybe it is getting so bad and scary because it is the month of Halloween and it is supposed to be a very spooktacular month! Please bear with me… I gotta try to keep my sanity some way or another and try to make some ‘light’ of things. I hope you can understand where I am coming from.
Boy did I have a day yesterday. I don’t think that I received actually any good news whatsoever. I am really deteriorating and I really need help. However, the help that I need is way out of my hands because I need treatment and help that I can’t afford on my own. That is why I am desperately pleading for others to please help me whether it is by donating or simply by even spreading the word of my donation sites. The more people that are aware of my donation site, the more chances that I will be able to receive the necessary funds that I need in order to receive the very lifesaving treatment that I need to live. I fear that if I don’t receive this treatment soon, I am not going to make it much longer.
I really need so much help. My health even though it has been going downhill for a while is now plummeting faster than ever. I think the parachute that was kinda ‘saving’ me for a bit has finally broke and I am freefalling down now without any safety equipment. I am really going to slam into disaster soon at the pace I am going. I desperately need to get to Mayo Clinic and Stanford for my GI problems and have immediate surgery here for my severe osteonecrosis. I also need have that very intensive ketamine coma that would probably benefit me most of all that takes place out-of-the country. Let me explain what has been happening.
I have been having really bad unexplained fevers. Not only am I spiking high fevers between 102-103, but also they are even worse for me because my body temperature is only usually about 95 degrees. So for me to go up that high, it is way out of the norm and really really really too high for me. In addition, everything is magnified for me because of my illness. Therefore, a simple cold or fever is like having the worst possible fever and the severe flu for a normal person. I also don’t have an immune system and I don’t have any ‘reserves’ to fight anything. The doctors were always afraid and are afraid that I am going to catch something like an infection or something along those lines because I would never be able to fight it. My body is just too weak and does not have the endurance, strength, or capacity to fight anything anymore. The doctors have proclaimed how I am on the ‘end of the rope’ and I really need something to be done fast because I can’t go on much longer.
Well, in addition to this unexplained fever, I have also been having trouble breathing. I am gurgling like crazy and you can hear wheezing whenever I breathe. It is so much worse when I lay down, which really makes it more worrisome because they say that when it worsens when you lay down, it could be your heart or something along those lines. I have been having such difficulty breathing because of so much fluid buildup that I literally feel as if I am drowning in my fluids. As much as I try to clear my throat or airway, it is literally impossible. We try to clear the airway by banging on my back and such, but it really doesn’t do much. To make it worse… whenever I eat or drink (which is of course a necessity), it makes the choking, wheezing, and inability to breathe so much worse.
That being said, I went to the doctor today in order to check into what the deal was with that because I was having extreme trouble breathing and with the high fevers and everything, we were worried that perhaps I was getting pneumonia or something. Well, I went to the internist and he heard exactly what I was saying was occurring and he said that an x-ray was needed immediately as well as a trip to the pulmonary doctor. So, I called my pulmonary doctor and within 30 minutes, I was sitting in her office looking into what was going on because this was something seriously wrong.
Turns out that it isn’t Pneumonia. It turns out that my GI system has deteriorated so much that the aspirations have gotten so bad that it is literally drowning me in my own fluids. I desperately need help in my GI system area because if I don’t receive it soon, I will die. It turns out that all this inability to breathe and such is because of the severe aspirations that are occurring. Even though I have been having aspirations for a while, they have severely worsened. This could also be causing the fever. The aspirations are so bad too that they are worried that I am going to get Pneumonia because Pneumonia is a very serious illness for anyone, let alone me. If I would get Pneumonia, it would be devastating because I would never be able to fight it.
The doctor said how I really need to get help fast. She said how I desperately need to get the transplant because the aspirations are just a symptom of how bad my body is failing me due to my GI system completely not working. I am filling up with fluids like I explained because of this and literally ‘drowning.’ However, I cannot get the transplant right now because I don’t have the funds and since we waited so long, I am not strong enough either. Therefore, I really need to have the tubes placed in me so that they can try to ‘buy’ time and to try to make me stronger. The hope is that the tubes will hopefully provide that goal and when the window opens up that I am strong enough, we will have the funds to be able to undergo the transplant. But of course that will only be able to happen if I receive help from others because there is no way my family is going to be able to afford this all on our own, as the cost of the multivisceral transplant (stomach, small and large intestine, pancreas, liver), the immunosuppressant drugs, and everything else that this transplant will require (such as the accommodations and how I will have to literally live at the hospital for like 3 months at least), etc. will cost. It is just astronomical.
In addition, like I just said, I also need to have tubes placed in me as well as gastric surgery because of what is occurring in the meantime before the transplant. Not only do I need the tubes, but also my colon is twisted and has an obstruction that should have been removed a while ago. I have been fortunate to be able to live with the obstruction though because my colon is so dilated, but it is getting to the point where my time is running short with that. However, I really need help from others if I am going to be able to undergo those treatments as well because they are also very costly. I cannot just go to any hospital, as I have to go to a hospital that will be able to do this procedure and handle my complicated illness and such. I really need to go to the Mayo Clinic in Minnesota or Stanford Medical Center in California. However, the Mayo Clinic doesn’t take my insurance and even with Stanford taking my insurance to a point, the cost will be astronomical because the amount we have to pay in copayments and traveling expenses is just so much. Just in copayments (and that is with the insurance paying), it will cost us $150 per day in the hospital, $100 for each test, $100 for each procedure, $100 for each x-ray/image taken, etc. It will clearly add up because when I go to the hospital, they take so much blood, do so many procedures, and take so many x-rays. Plus, I will be in the hospital for a while, so I will have to pay for that, as well as hotel expenses for my dad and such. But even so, the Mayo probably would be a better place for me and they barely even take my insurance whatsoever. I don’t know is going to happen.
The aspirations are just getting so horrible and it is really preventing me from breathing. The doctors want me to stop eating and drinking because it is only killing me more by compounding the problem and killing me more. However, eating and drinking is a necessity in life and if I don’t do that, I will surely die. Therefore, that is another reason why I need the tubes now. I need the tubes because this way I won’t have to eat or drink anymore.
When I went for the x-rays today, they also noticed how distended and how filled up with ‘air’ my colon and abdomen is. They saw how much my GI system is literally dying off and how much added problems it is causing my putting added pressure on all my organs including my heart and lungs. Since nothing is moving in my GI tract, I am literally being poisoned. I can’t expel anything including the medications and food that I am taking and therefore, the food is continuing to rot and ferment in me and the medications are continuing to just remain in my bloodstream instead of being flushed out. The doctors are extremely worried about this because it is building up so many deadly and poisonous toxins in me. Even when I go to the bathroom, you can literally smell the mucous fermenting (not to sound disgusting).
Since all this is occurring, this could be what is causing the fevers as well. It is very dangerous and something really needs to be done and done fast. The doctors told me how urgent it is that I get to the Mayo Clinic or Stanford to get help, but like I said before, I can’t afford it on our own. In the meantime though, the doctor is trying to help me as much as possible to be as comfortable as I can be as well as to ‘buy’ time and not have me drown in my fluids. Therefore, she has put me on a lot of new medications as well as a huge nebulizer machine. I was on one on the past, but this machine is much more intensive. The only thing is that this machine is so big. I really wanted to get the smaller one because it was easier to use and more portable, but it was more money than this bigger one (I guess they charge for convenience). Even this bigger machine was not cheap. But, when you are strapped for cash, I had no choice but to really go with the bigger one. But, I am planning on saving up for the smaller one because there is no way I can bring this bigger one with me when I travel to hospitals and doctors. Gosh… everything just costs so much money in the world that can help a person. Whatever happened to a person’s life being the most important thing and people being worried about that above all else? Even this bigger
I also had to see the surgeon today for the osteonecrosis because I am in horrible pain. I never have been in such pain before. My jaw and teeth are killing me and it literally radiates throughout my jaw and travels right to my brain. It makes it literally impossible to eat or drink absolutely anything, and even when my tongue touches it in certain spots… it sends me through the roof. We knew that this was really bad and how much surgery was very much warranted. The surgeon knew that from the last time I saw him that it was ‘bad’ and how I needed it ASAP. However, it is now at the point where the surgery needs to be done now.
When I went to the surgeon today because I called him yesterday because the pain has gotten so bad, he said that I really need surgery immediately. He said that he doesn’t know how much longer this can actually ‘wait.’ He took more x-rays and scans and just in 5 days, there was a drastic change in the osteonecrosis and the teeth. I knew that something had to be wrong because I was just in so much pain. It feels as if I have brain-freeze (like when you eat something really cold and you get that cold sensation in your teeth that shoots up to your brain that you can’t stand) and won’t go away. It is like when an electrical current strikes you when you are touching something metal and you get stuck on it. You want to come off the metal and stop touching it, but you are like plastered onto it with the intense painful electrical current going through your body. Well, that is what is happening to me. It feels like I am being plastered with the electrical current going through my jaw and teeth and I can’t get it to stop no matter what. To think that I am feeling all this and I am on all this pain medication too such a morphine, dilaudid, methadone, ketamine, nucynta, etc. I don’t even wanna know what it would feel like without meds. In fact, the doctor said how he wises he could give me something, but I am on everything already.
Just in the 5 days, the doctor couldn’t believe how much things gotten so bad. I developed even more death in the teeth and the whole entire roots in the teeth and such are all inflamed and such. The doctor said it is just simply horrible and something needs to be done immediately. But just like everything else that needs to be done and urgently done, the surgeon isn’t on our insurance plan and this type of surgery can’t be done by just ‘anyone.’ It is a specialized surgery that I will not be covered for no matter who I am with. So, we really don’t know how we are going to afford this surgery either, but this is something that needs to be done immediately because not only am I in severe pain, but the bones and teeth are literally dying. The jawbone and other bones are literally protruding right through my skin and roof of the mouth.
The doctor is having an urgent meeting in the hospital on Monday to see when they can fit me in. He wants to get me in as soon as possible because of this. It can easily cause a massive infection that can literally cause even more problems and kill me because of it causing more problems with my other illness. He also wants to take care of it so urgently because the pain is literally causing me to ‘pass out.’ They are fearing that I am suffering from having a vasovagal response, which they are very worried about. After all, I am hypersensitive as it is, so I can feel literally anything whatsoever… no matter how minute. The doctor said that people that suffer from my condition where the nerves are all exposed and inflamed the way it is occurring with me say that it is so excruciating and worse than childbirth and cutting off limbs. So if that is what a normal person feels, you can’t imagine how bad it is in me because I am so much more hypersensitive.
The doctor also wants to get me into the operating room as soon as possible and get this taken care of because I really can’t eat or drink. I am not in the healthiest weight nor can I afford to lose any weight whatsoever. The doctors are very scared that I am losing weight because of all this and it will also cause even more problems because I can’t afford to have this happen. I only weigh in the 60s as it is and have a BMI 10.8, which is the lowest many doctors have ever seen before already. So… between the pain, weight, the chance of a life-threatening infection occurring, the osteonecrosis getting worse, etc. … We really need to move.
Well… I guess that appears to be all. The new book from Helen Fielding just came out and I can’t wait to start reading it. “Man About the Boy” is the latest book from the “Bridget Jones” series. I loved her other two books and the movies were really amazing too.
Well… gonna get going. If you can please help me by spreading word that I am in desperate need of donations, I would really appreciate it. If nothing else, if you can please say a ‘prayer’ for me… it would be much appreciable, as prayers are free of cost and can really help bring about a miracle, which I am in desperate need of occurring. Thanks again for all your continued support and encouragement. I wouldn’t have made it this far without you.