So there is a lot of promise with the pump even though it is going to be an extremely difficult and risky procedure. The pump is quite large compared to my body size and therefore I am going to have a plastic surgeon operating on me as well in order to help place the pump in me. The plastic surgeon is going to try to help build a space and help close me up because the last thing they want would be for my skin to erode and the pump to come through the skin. They are really concerned with the complications I am going to receive after the implantation as well because I dont have the padding that is necessary to cushion the implant. I can easily have the skin eroded and have an infection set in. In addition, the surgeon is extremely worried about the overall surgery because he said that it is an extremely risky and dangerous surgery for me. Due to my medical condition and the overall state that I am in, he said that anything that I do is basically life and death. He told my dad and me this week that he is so scared for my life and how scared he is that I am going to die. He said that he is so afraid that someone is going to sneeze or something and I am going to die because of how medically compromised I am and how much I am in bad shape and malnourished. This is just another reason why I dont want to go to the hospital now that my bloods are bad because I dont want to risk getting worse because of something else occurring. He said, even though I really need this pump, I need to be prepared that I can very easily die during this procedure. Like he said to us, I am leading a slow death and any intervention or surgery can really kill me immediately. I really need to go for Hyperbaric Oxygen Treatment, but unfortunately it is extremely expensive and the insurance isnt covering it whatsoever. I really cant afford to pay for it and therefore, I wont be able to receive it without the help of others. Even though I have only had a few treatments, I have already seen a difference with the treatments. I actually look forward to the Hyperbaric Oxygen Treatment because if nothing else, it really helps with my stomach and circulation. I have been really feeling lots of pains in my stomach and I have been more distended and bloated than ever lately. In addition, I am extremely constipated too. I walk around like I am 9 months pregnant and ready to give birth. I really need someone to pop me. The hyperbaric Oxygen Chamber is the only thing that gives me some relief in that area because it helps in the bloating and distension to some extent. It makes it a little more bearable and when you are suffering in the amount of pain that I am, you will take it. After all, the more pain and suffering that I am in and the more bloated/distended that I am the worse my disease flares up and the worse the autonomic dysfunction is exacerbated. So this little difference in making my stomach feel better actually makes a HUGE difference overall. In addition, my tissues in my limbs are becoming necrotic, as they are all discolored because of my illness. Even when I elevate the limbs, they are still remaining discolored, which means that they are getting really bad. The doctors are extremely scared that I am going to lose my leg or something. In fact, the doctors said that even if I get better, I may still end up losing my leg because of how much time has elapsed and how long the tissues have been deprived of oxygen. At least when I am in the Chamber, I am getting oxygen to the necrotic tissue. In fact, all the discolored tissue actually resumes normal coloration. It is simply amazing. So I am really hoping that I will be able to continue the hyperbaric oxygen treatment. There are very few things that I can say actually help or make a difference and this is one thing that I can say definitely does help. Unfortunately though, the doctors say I will need at least 40 treatments and of course if I dont get any help from others, I wont be able to undergo those treatments because I definitely cant afford them on my own. So I am hoping that the video that was made and my website will bring in some much needed donations so I can receive the lifesaving treatment that I need. After all, this treatment alone will cost me about $1000 a week alone on top of everything else. On top of everything else, I am really suffering because of the weather. I really hate this time of year because it is the in between weather. I am like a human weather station because I can feel the slightest change in weather, temperature, humidity, etc. I hate this time of year because I need like a perfect 75-degree temperature in the house. However, with the weather that is outside now, it is the type of weather that you dont really need air-conditioning and can open the windows. However, with my illness, I cant tolerate having the windows open. I cant tolerate the breeze the comes through the window because it is extremely painful. It literally feels like I am going through a pane of glass when the breeze comes through the window. In addition, when the windows are open, there is no real way to regulate the temperature. At least when the A/C is on or the heat it will go on and off depending on the temperature. I feel so bad for my parents because they would love to have the windows open. I would too because it would be great to get some fresh air into the house. However, it is literally impossible because I really cant tolerate it. I feel so bad because it is kind of money that is being spent unnecessarily on air-conditioning, as we can easily open the windows because it is so cool outside. However, like I said before I cant take the breeze coming through the window, the fluctuation of temperature because it will go so very low if it is too cold outside or too high if it is too hot outside, and the quality of the air because it feels unclean and thick! When the windows are open, my autonomic dysfunction really flares up. I become really dry and swollen. It also makes it extremely difficult to breathe. We are also leaving Monday, September 16th for Georgetown in Washington DC. It is only going to be a brief trip, but we have to go to the hospital and meet with the transplant team. After all, I need to have a multivisceral transplant, which incorporates getting a new stomach, small and large intestine, pancreas, and spleen. There are only like 6 hospitals in the country doing this rare and radical surgery with Georgetown being one of them. Hopefully the appointment will go well and it wont be much longer until I receive the transplant. After all, I really dont have time on my side because this transplant is the riskiest and most dangerous transplant to have of all transplants. The survival rate of the transplant isnt that great either as it only has about an 80% survival rate after the first year and 50% after 5 years. The 12-hour surgery is often the only option for those suffering from severe abdominal conditions. I really need to be strong for this transplant so I can make it through it and the more time that passes, the weaker I am getting. The doctors already are hesitant about me making it through it. We dont have time to waste.
Posted on: Sat, 07 Sep 2013 05:42:08 +0000
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