Mallory,
You do not know me but I have read your story and I thought that you might want be interested in mine because I have already been where you are going. I too had Wilsons Disease. My story started in 1980 at 14 years old. I had cirrhosis so bad that doctors were not able to get biopsies and after three years of misdiagnoses I was referred to U of M where a specialist ran blood tests and confirmed I had the crippling disease. After several years of treatment I stablized and lived fairly normal with few symptoms accept for encephelopathy, fatigue and some minor water retention. On 11.15.2007 I fell 27 feet out of my tree stand while hunting from White Pine in Cadillac, Mi. I fractured three vertabrae and was transported to Genesys Hospital in Flint, Mi. where a nurse there told me that the MRI taken for my back injury showed verasies in my throat.
In case you do not know what those are, they are like little blood filled fingers that form resulting from restricted blood flow in the liver. Two were ready to burst so she broke hospital policy and told me to go get it checked out. She was right. My specialist at U of M determined that I had end stage liver failure and only had 5 years or less to live. I was listed on the transplant list and while my symtoms got progressively worse. I was bloated, jaundice, memory loss, aggression, etc. After two years on the list and no hope in site, a young man I have known since birth asked me if he could donate part of his liver.
At the time, it was not possible because I was so sick and weak that the donated liver might reject and the doctors did not want to risk wasting the young mans gift. After 4-6 months later, I improved enough to consider the offer but did not accept because he is a young pastor (30) with 5 kids and just getting by financially. This young man was tenacious and after the third offer I agreed on the basis that he met with the specialist on the risks involved and his wife agreed. So, after all the consults and compatability test the results back a 95% match. Doctors said that the left lobe of his liver was significantly separated from the right which is rare but made him perfect!
Doctors said I would need 60% because of my height and weight. He was only 150 lbs at 6"3". A skinny dude. They told him he would have to go through pshyciatric examination to make sure he was totally in it, and not being bought or chorused. First time he was denied for various reasons, so he emailed the liver team admonishing them for putting US through all the testing, getting our hopes up, and then denying us on insufficiant reasons. After that, the date was set for 8/23/2010 and in seven days I was out of the hospital with NO incidents. After three months both our livers were regenerated and I am going to the gym three days a week and gained all my weight back. Miraculously, I have not had any rejection or infection issues which is extremely rare according to the professionals.
On 1.2.2010 I will be returning to work. Its been three years on an emotional roller coaster but now I am healed and the disease is gone with my old liver. In conclusion, if I can do this Mallory, you can. My miraculous recovery is rare granted, but not impossible for you. Just remember you have to go through the valley to get to the mountain top. Just have faith in God and leave your burdens with him and he will see you through. I pray that you get your gift and a second chance at life with a speedy recovery. Here is my website link in case you are interested. http://www.caringbridge.org/visit/eatonfamily/mystory
Brad
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