Surviving after five organ transplant – Bravelets

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Surviving after five organ transplant

Posted on November 20 2014

Surviving after five organ transplant
I was diagnosed with Gastroparesis and chronic intestinal pseudo obstruction in 1994. This means that I cannot eat due to a paralyzed GI tract. I have been on feeding tubes and IV nutrition off and on for 20 years. Eventually, I lost all of my veins due to frequent sepsis from my IV lines. I was starving to death. With no options left to prevent starvation, I was listed for a five organ transplant which included a stomach, small bowel, pancreas, liver and duodenum. I was transplanted in 2006 at the University of Pittsburgh. The doctors did not think I would survive.

In addition to those, I also have dysautonomia, legal blindness, mitochondrial disease, long QT, osteoporosis, an MS like condition, severe neuropathy, among others. I have been through cardiac arrest six times. I am strong. I am brave. I am a winner and dedicated to win this fight for others and eliminate DTP for everyone in the future. No one in the US should starve to death when food is everywhere.

In 2001, at the age of 23, I founded G-PACT to help find a cure and provide a wide range of patient support services. We have since become the largest non-profit fighting these conditions and made a lot of progress towards awareness and a potential cure.

In spite of the challenges and days where I can't even get out of bed, I have voluntarily devoted my life to assisting patients and seeking out all resources possible to help find better treatment options and a cure. I am on disability, and we operate via Internet, phone, and e-mail. No one is paid for what we do. We are all patients dealing with the challenges of a serious illness, while fighting for others in spite of how difficult our days can be.

Please help us continue our work. The donated portion of your purchase goes 100% towards awareness, advocacy work, and maintaining operations and providing free educational and supportive services to all those affected by DTP.
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