Help Anwen keep a New Liver
to buy a shirt instead click here
Hello, I am Anwen. I'm a 37-year-old researcher, mom of 2, foster parent, and gamer. I love singing in choirs, hiking, cooking, gardening, playing tabletop and board games.
2 years ago my skin started itching and I turned yellow. I was told it was an odd reaction to a Depo Provera shot. I started getting more tired, I stopped singing in the church choir and had to bow out of my master's program.
One day after my physical, my doctor admitted me to the ER for liver failure. A week later I was given the diagnosis of Primary Biliary Cholangitis - a rare disease where my body was destroying bile tubes in my liver.
While many people live decades or longer with this disease, I was not so lucky. It progressed until May 2021 my doctor called me and told me I would need a liver transplant.
It's been a wild few years and it's been difficult for me to stay fully employed with the pain and fatigue of my disease. Covid made it extra hard with the fear of getting sick and dying was increased since I have an under-responsive immune system and am chronically anemic. I often lose sleep to the pain and GI symptoms of cirrhosis that is caused by this disease.
The news of the transplant comes as a very mixed bag of worry and relief. Worry, since it will drastically affect my life. Relief, because maybe I can go back to a mostly normal life.
If I lose my job before the transplant is complete, I could lose my place. I am seeking funds to be able to afford the transplant, the aftercare, and the possibility of having to purchase COBRA insurance.
This may be my only chance to see my daughters grow, to adopt my youngest from foster care, to spend time with my family, to contribute to the research world. Without the transplant, I could be dead within 3 years, maybe less.
Update: Though there were massive complications, the surgery itself went well: 6hrs, only lost 500 units of blood. So I have the liver in. It has CMV, I don't so that is a further complication. I am trying to do a little more every day.
Any amount you could give will be a help. Disability for liver disease is difficult to get and even a transplant only allows disability to kick in after a year. There is no guarantee I will even get the time to use my long-term disability insurance, since this disease has progressed slowly they can reject my claim.
This is what transplant centers recommend: start a go fund me to enable the center to justify the transplant. It is incredibly difficult but I have to depend on the kindness of strangers here. If everything works out and I do not end up needing this money, I intended to donate it to the American Liver Foundation or similar charity in all of your names.
