Meet our 2022 Southwest Indiana LIVEr Champion - Eli
When Eli was born, he was a perfect, health baby. He did all the things newborns are supposed to do. Around 4 months of age, we noticed he was not meeting milestones. Eli was weaker than other babies his age and took frequent, long naps. At 5 months old, around Christmas time, we started to observe belly distention. One day in early January, we called his pediatrician, and he told us to come in to have him checked out. From there it was a whirlwind. We immediately went to our local hospital for imaging. Then we were told Eli needed to be transferred to Riley’s Children Hospital in Indianapolis.
At Riley’s we were told Eli’s distention was something called ascites, and his imaging showed cirrhosis of the liver. The doctors originally did not have a clear picture as to what was the cause. We spent 7 days in the hospital, treating Eli for his ascites and starting new medications. Ultimately, the doctors diagnosed the cause as Alpha 1 Antitrypsin Deficiency.
Eli had multiple admission to the hospital. He had several paracentesis procedures to relieve the fluid accumulation in his belly. He was treated twice for spontaneous bacterial peritonitis, one of those times, he was also septic. He had a PICC line placed to help with frequent lab draws and different infusions, and Eli had a feeding tube place as well because he was even too weak to drink his bottles.
At the beginning of May, with a PELD score 40, Eli was placed on the transplant list. He was 10 months old and weighed 14 pounds. Looking back in pictures, he really was wasting away. He had a skinny face, arms, and legs with a very big belly. Eli never lost his sweet smile though.
May 31st, we received that life changing phone call. We quickly packed and raced our way to Indianapolis. Eli was evaluated by his surgeon, and it was decided that he was in good enough condition for transplant. Very early on June 1st, we handed over our Eli to his medical team. His surgery went smooth initially, however he did have to go back shortly after due to ultrasound showing no flow through one of his vessels. The second surgery successfully fixed the problem. We spent 5 days in the ICU then another 6 days in on the transplant floor. Discharge day was one of the happiest days of our lives.
Eli quickly started to gain weight and become more active. With the help of his wonderful therapists with First Steps, he began to make those milestones he missed. He was able to have his feeding tube removed. Eli has impressed us and his healthcare team every step of the way.
Eli is now three years old. His labs and checkups continue to bring us good news. He only takes two medications. Now Eli is in preschool. He enjoys driving outside in his toy gator, playing with dinosaurs, and all things superheroes, especially spiderman!
We are so incredibly thankful everyday for the gift of organ donation. We can never thank his donor family enough for the beautiful life they gave to Eli and to our family.
To support Eli’s Team, please click here.
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!