If someone you love needs a donor, you should check out the data at the Organ Procurement & Transplant Network. Here you can find out everything there is to know about patients on the transplant waiting list, short of their names & addresses. You can find out how many patients are listed nationally, regionally, and at each center. You can find out their ages, gender, blood type, MELD/PELD, diagnosis, race, citizenship, and how long they’ve been waiting. Browsing the data is fascinating and sometimes quite surprising. For example, I just discovered that there is currently a woman aged 50-65 with biliary atresia who is listed for liver transplant. Even more remarkable, she’s waiting for her first transplant, not a repeat transplant. Amazing!
Here is the path I followed to collect the information for the above table: OPTN.ORG → Data → View Data Reports → Build Advanced → Step 1: Waiting List → Step 2: Age (9 items) → Step 3: Diagnosis (282 items), Gender (3 items) → Step 4: Counts, Portrait → Optional: Organ: Liver → Optional: Count: Candidates → Step 5: Submit Request.
In this example I built a report based on National data, but you can also search the database for patients at a specific transplant center. You can easily find out how many people are listed at your own transplant center, their age and blood type, etc. Just remember that the public OPTN database is not updated in real time. There’s usually a delay of 2-3 weeks. But still, in all of medicine, there’s not another resource that can compare to the public OPTN database. The depth of information you can find out about transplant candidates, recipients, and donors is amazing. If you love someone on the transplant waiting list, you’ll find many uses for this outstanding resource.
After the initial shock of learning that your child with biliary atresia will need a liver transplant, the next question parents confront is financing. How on earth will we pay for this?! Young families and those with limited insurance coverage may face very serious hardships indeed. Even those with good coverage may find that transplant related expenses soon overwhelm family finances. [Read more →]
Here’s a look at some well known people with connections to biliary atresia..
Kendall Ciesemier, 16, was born with biliary atresia and received two liver transplants in 2004. That’s a lot for anyone to go through, but that’s not why she was selected a 2009 Build-A-Bear Workshop Huggable Hero. As she was recovering from her transplants she decided to try to help AIDS orphans in Africa. She asked friends and family to donate to World Vision instead of sending her get well flowers and gifts. Her small fundraiser quickly caught on and grew into a nonprofit organization called Kids Caring 4 Kids. [Read more →]
Boston Marathon runner Tom Nealon and 7-year-old Zachary Rue were matched through the American Liver Foundation’s Run for Research® Patient Match Program. Tom is a law professor at the University of Miami and Zachary is an adorable little guy who was born with biliary atresia. Together, over the past 6 years, they have raised more than $425,000 for the Biliary Atresia Fund for the Cure. Wow! This year they are trying to raise another $100,000 targeted for biliary atresia research. The Boston Marathon will take place on April 20, 2009, and they will be actively fundraising up until that date. [Read more →]
Our son Nicholas was diagnosed with biliary atresia in 1994, when he was 8 weeks old. His story begins the way it often does with this disease. He was a full term healthy baby and until the day of his 2 months check-up we had no idea there was anything wrong. He was such a beautiful baby — chubby, content, and sweet as could be. But on the day of his check-up the pediatrician could see that something was seriously wrong. “Hmmm.. Does he look jaundiced to you?” I think as long as I live I’ll remember those words and the sudden tension in the room as he examined Nicholas. I could feel it in the air.
[Read more →]