Family and friends of Elizabeth Barnett are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.

February 8, 2021

First, thank you for visiting my Help Hope Live page and supporting my fundraising efforts.

I was born in 1980 with several complex congenital heart defects including having a single ventricle and single atrium. I also had dextrocardia, pulmonary stenosis and double outlet left ventricle. My prognosis was not good; a respected pediatric cardiologist actually told my mom to go home and have more kids to keep her company when I died.

Obviously, she completely ignored that advice and took me to Mayo Clinic in Rochester, MN. In 1986, I had a modified Fontan. At the time it was a palliative surgery designed to get the kids to maybe see their teenage years.

Well, not only did I see my teenage years, but I went to college, worked full time as an HR Manager and lived a full and active life.

In June 2018, I was diagnosed with a severe Fontan complication called Protein Losing Enteropathy. I was also diagnosed with Fontan Associated Liver Disease, or cardiac cirrhosis. The Fontan circulation causes blood flow in the hepatic vein to become congested, therefore damaging the liver permanently.

So, as I approach my 41st birthday, I have been approved for a heart and liver transplant at Vanderbilt in Nashville, TN. I know that I am so lucky to have seen my 40's, but I want more time. I recently married the love of my life and I want a chance to grow old with him. I have two amazing, hysterical step kids and I want to be around to see the fascinating adults they turn into. I also have a niece and two nephews, one of which calls me Aunt Boo Boo Heart, that I want to have the ability to chase around and play with until they are the ones that are tired.

I have a lot of motivation to help me fight and survive a double organ transplant, I just need some financial assistance along the way. There are so many transplant related expenses that insurance doesn't cover; like the rent I'll pay in Nashville and I could be there for 6-9 months. One of my post-transplant medications will cost $500 a month. I will be making regular trips to Nashville for the rest of my life to be followed by their transplant team.

I am eternally grateful for all the love and support that I have been given that has helped me make it this far. And I will appreciate all the love and support I will have thru this process. I promise I will spend the rest of my life paying it forward and putting good karma back out into the universe.

Please like my Facebook page The Feisty Fontan to follow my transplant journey or at www.thefeistyfontan.com.