LIVEr Champion

2019 Northern CA LIVEr Champion

Jayden

Jayden was born 29 weeks prematurely and has undergone many surgeries that were minor. At nine months old, Jayden was diagnosed with Cerebral Palsy. On July 20th at the age of 7, I got a call from his Neurologist that his Liver numbers were off. The neurologist showed his results to a GI Doctor who at the time didn’t think much since they’ve seen worst. However, the neurologist who has cared for Jayden since birth wanted an ultrasound, a MRI, and a biopsy. All these tests in a matter of two weeks.

Due to Jayden’s medical history, our GI told me he would less likely be a liver transplant candidate. Come November 10, 2016, we had our first visit with a hepatologist from UCSF Mission Bay, and they started running their own tests trying to see the cause of all the tumors in his liver. Because Jayden wasn’t sick at the time, he wasn’t a top priority on the list. This went on for another year until January 27, 2018 when we received a letter from UCSF that Jayden was active on the liver transplant list. They told us to plan for six months to a year before we get the call. Surprisingly, we got the call on the evening of April 13, 2018, three weeks after his birthday, and needed to be there at midnight for Jayden to prepare for his surgery next morning at 8 AM.

Luckily for Jayden, his transplant came at the perfect time. His MRI on his old liver showed 12 tumors, but upon further testing, doctors found a total of 20 tumors that could’ve been cancerous. Jayden was indeed very lucky. During the tests, doctors discovered Jayden had DNMT3A caused by the portal valve that goes straight through the liver. His portal valve went behind his liver causing him to develop tumors due to the lack of blood flow. Thankfully, surgeons were able to properly hook the valves up.

After a successful surgery, Jayden spent 48 hours in ICU before being moved to transition care for another six days of physical therapy. During that time, Jayden was on 10 different anti-rejection medication to help settle his new liver. Luckily, everything went well, and Jayden came home on April 23, 2018.

As months goes by, Jayden is now 15 months post op! Jayden is now only taking Prograf and goes in for bloodwork every four weeks to make sure his new liver is functioning properly, and every six months, an ultrasound to make sure main blood vessels are working properly.

Post-transplant for Jayden has his good and bad days. Some time he would be the happiest kid, and other times, he doesn’t want to be bothered. Learning to live with a new liver comes with challenges such as diet restrictions and medications. As Jayden’s mother, I do the best I can to give my son the best life he can have. Thankfully, our family and friends are here to support Jayden’s journey.

For this year’s Liver Life Walk San Francisco, Jayden will take on as a new liver champion with the American Liver Foundation Northern CA to continue their efforts in inspiring, supporting, and educating others. For that, we salute to you as a true ALF Warrior…Family Strong Together.

2019 Northern CA LIVEr Champion

Elizabeth

In the summer of 2016, Elizabeth suffered from an acute pain in her stomach that took her to the emergency room. There they did a CT scan of her abdomen and found her liver enlarged and an active shunt present between the kidneys and spleen.  After initial tests she was diagnosed with NASH (Non-Alcoholic Steatosis Hepatitis) with Second degree fibrosis but not a clear reason why.

The next two years were extremely difficult with multiple doctors visits weekly and trips to the Mayo Clinic in Minnesota. It was finally determined that it was a result of conditions associated with a connective tissue disorder that affected the joints, tissues, digestion and metabolic system.  With the help of her team of medical doctors she was put on a extensive regime of medicines and diet to control the metabolic disorders and digestive issues as well as regular phlebotomies to address an additional genetic mutation that was depositing excess iron into her already struggling liver.  In addition, the connective tissue disease was addressed with pain management and a new modified program of yoga, functional movement and mindful practices to help her regain an active life.

While she will be on medicines the remainder of her life, today her diagnosis has been downgraded to NAFLD (Non-Alcoholic Fatty Liver Disease) with no trace of fibrosis.  She teaches inclusive yoga to those who wish to have a more active lifestyle and to those with chronic illnesses. Her own journey has helped her reach out to those with similar stories. She feels that surrounding herself with others who support her and practicing daily gratitude for her family and staying active in the community are the best medicine yet.


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