Our entire childhood was spent in Charlotte, North Carolina, most of which was happy and healthy. We spent family vacations in beautiful places like Maui, Laguna Niguel, Japan, and our grandparent's condo in Myrtle Beach. Shaina always said that she was going to be a Hollywood actress when she grew up. She attended an arts magnet school in middle school where she studied drama and dance. She said she would have a lot of babies, because she loved kids, and they loved her.
But as high school dragged on, Shaina got sicker. Eventually a tutor had to come to the house to help her graduate high school. She missed the graduation ceremony, but Mom had a party anyway and made her wear her cap and gown for pictures with the family in the living room. By this time, I was a college sophomore living in Raleigh, NC. I was able to come home many weekends and whenever Shaina was admitted to the hospital. The stress on our family was overwhelming, but we had no idea what the next several years would entail. We thought she would get a transplant and be the happy, healthy Shaina of her childhood.
By her senior year, enough damage had been caused to Shaina's liver that she needed a transplant. My parents searched for the best liver transplant program in the country. Soon after Shaina's graduation, they sold the dream home that they had built two years before and moved with my sister, brother, and two dogs to Dallas, Texas to be closer to Baylor University Medical Center. Shaina received her first two liver transplants at age 19. The first liver never took, and Shaina spent a horrific six weeks in the hospital, undergoing dozens of surgeries that came along with the complications of an unsuccessful transplant. After a bumpy start, the second liver worked like a dream. It lasted for three wonderful years until there was a thrombosis that cut off the main blood supply to her liver. This resulted in infection that landed Shaina in the hospital for the next 5 months, while she waited for a new liver. It was a trying time, to say the least.
|Shaina in the hospital|
Several months ago, Shaina was diagnosed with a severe enterovirus that, because of the immunosuppression she was on to keep her autoimmune disease under control, spread to every part of her body: skin, blood, brain, organs, etc. With no precedence for treating an enterovirus this severe, her infectious diseases doctor decided to try massive and extended doses of IVIG therapy, along with a healthy dose of crossed fingers. During part of this time, when the virus was at its worst, Shaina was hospitalized. The doctor who heads the liver transplant program came to see Shaina when I was there with my brother, David (a rare moment when we had convinced my mom to leave the hospital). He told Shaina that this virus would kill her. The only hope for getting rid of the virus was to lower Shaina's immunosuppression while trying the IVIG therapy. This was a problem because if they lowered Shaina's immunosuppression, her autoimmune disease would kill her liver. But this was her only shot. They would lower Shaina's immunosuppression, give her IVIG, and when the virus was gone, re-list her for a fourth transplant to get her a new liver. Fourth transplants are rare, anywhere in the world. And we did not know if the IVIG would actually work on the virus. But this was the only way to save Shaina. So it was done. And the IVIG seemed to work. After almost a year, her cultures came back negative, meaning the virus was gone. The head of the program took Shaina's case to the transplant ethics board and she was approved for a fourth transplant. But then, the enterovirus came back. Thankfully, the infectious diseases doctor caught it early and, after another round of IVIG, the cultures came back negative again and it hasn't returned. Which brings us to the last couple of weeks...