2022 Southeast Alabama LIVEr Champion - Nancy Jasso
My journey with liver disease began when I started drinking at the age of 12. It helped me to fit in with the cool kids when I started junior high school and I liked the way it made me feel. At first it was an occasionally thing and in adulthood became an everyday thing.
When I was in my 30s, I was drinking very heavily and I started having symptoms of liver disease, but at the time, wasn’t sure what was wrong with me. I was having digestive issues, whenever I ate or drank anything I was running to the bathroom soon after. I was also vomiting every night which was causing me to lose weight. My eyes started to turn yellow, and I turned to Google for answers. Then I knew I had to speak to my doctor about my concerns. After some blood work and an examination, she told me that my liver was very enlarged, and she ordered an ultrasound. She didn’t tell me what she saw, but she referred me to a GI doctor for specialized care. Both of those doctors told me that I could never drink again, but I had an addiction, and I couldn’t stop. The withdrawals were just too much for me and made me very sick. I continue to drink and about a year later I began to have hepatic encephalopathy. I was very confused, I was forgetting important things, and I went through a weekend with terrible hallucinations. It was very scary because I didn’t know what was wrong with me.
Soon after I started vomiting blood and it lasted for about 24 hours. I finally agreed to go to the hospital. I was weak dehydrated, disoriented, and I was having withdrawals. At the hospital I was given several units of blood, I went through numerous tests and scans and I detoxed while I was there. I left the hospital nearly a week later with a diagnosis of cirrhosis. That was the first week of 2015 and I haven’t drank any alcohol since then.
My GI doctor then referred me to a transplant hospital. The hepatologist I saw confirmed what my GI doctor said that I would need a transplant. The doctor said that I was a good candidate if I could remain sober and complete the requirements to get on the transplant list.
After my first hospital stay, I was sick. I started having more symptoms. I was in pain, I had neuropathy in my feet, I had ascites build up which caused me to need several paracenteses, I had hair loss, I was nauseous, I had sleep paralysis, and an inverted sleep pattern that was driving me insane. I had several hospital stays, one of which I had recurring bleeding varices and one bout with Spontaneous Bacterial Peritonitis. My family was scared, and my husband didn’t think that I was going to make it. They really went through a lot with me and caring for me.
About a year and a half before my transplant I developed hepatopulmonary syndrome. I was having difficulty breathing, was on supplemental oxygen, and the only cure was a transplant. I was so afraid that the lack of oxygen to all my organs was going to kill me before I was able to get a transplant.
I am a wife, a mother, a grandmother, a sister, and a friend. I have so many reasons why I had to stay mentally strong enough to not give up. Although I was sleeping my days away my reasons were always on my mind.
I finally got the call that I had been hoping for on June 8, 2019, and I was transplanted on June 10, 2019 at Emory University Hospital. The Hepatopulmonary Syndrome got worse right after transplant, my oxygen level went dangerously low several times in the coming weeks. I was afraid I’d never breathe on my own again. Then I started to improve. I was off the oxygen 3 months later and I felt such gratitude for my second chance to live. I’m now excited about each day and all the things I’m able to do that I thought I’d never be able to do again.
I know that there are people who, like me, never intentionally hurt their bodies, people who have liver disease for reasons beyond their control, people who are born with it and like I was, people who know very little about liver disease. I hope that awareness and education about liver disease gets better soon, and I hope that my story will help someone else. Whatever the cause, we all matter, and we all deserve the best care and support possible.
2022 LIVEr Champion—Barbara Pitts
I’m so excited to be your national champion for the Liver Life Walk! It is the one fundraiser that I participate in every year.
I was first diagnosed with liver disease in 1999. At first, they thought I had PBC, but I didn’t have the marker for that, so we technically never did figure out what disease I had. My LFTs were off the charts and some of the highest ever seen at Johns Hopkins. MELD scores didn’t exist back then or I would have received a transplant in 2002.
I stayed pretty healthy for many years and took a turn for the worse in 2016. First I had ascites then varices. Then in August 2020, I was diagnosed with liver cancer during a routine MRI. While it was terrifying, it ended up being a blessing. During the treatment, they found an aneurysm in my splenic artery, which we immediately treated. It also gave me a MELD exception score. That made it possible for me to receive a liver transplant on July 9, 2021. It’s a tough surgery, but I can’t believe how much better I feel!
Unfortunately, my liver sort of destroyed my kidneys, and I am now waiting for a kidney transplant. At least this will be much easier than the liver transplant.
I have participated in every Liver Life Walk since the first one in 1999. If I was too sick, I collected donations. If there wasn’t a walk in DC, I held my own walk and got friends to do a 5k with me. To date, I’ve raised about $55,000 for the ALF. I want to do everything I can to raise money for research and education. I have an incredible group of friends who support me emotionally and spiritually and as far as the walk goes, they’re always there with donations. Don’t be shy when asking for money! It’s all going to a great cause! Good luck at the 2022 Liver Life Walk!