I'm excited and scared for the transplant. It will cure my symptoms and for the first time in my adult life, I will be able to live normally. I'll be able to travel for more than 5 days, I won't feel really sick 4 days out of every week, and I can work a normal full time job.
I would love to be a health teacher or work for the department of health. I have my bachelor's degree in community health but have been unable to use it because of the severity of my disease.
I have to raise at least $2000, before my transplant team will do the surgery.
The surgery will be very difficult and expensive.
Immediately after the surgery I will be in the ICU. Within the first few days, if I'm doing well, I will get transferred to the transplant unit. About a week after the surgery I'll get released from the hospital but I'll still be in a fragile state. I'll have to check in with my transplant team numerous times each week. Due to those factors I'm not allowed to leave the Durham area of North Carolina, where I'm getting my transplant surgery. I'll have to stay in a hotel for about a month and have full time care by family members.
The transplant surgery will be huge to me but also to the Porphyria community. The surgery has only been done one other time for treatment of porphyria in the US. However, it has been done more commonly in Britain with great success.
Any donation will be greatly appreciated!
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