Warning: This post will likely not be terribly interesting to the average person. May I interest you in a yummy recipe instead? But if you or your child are on the journey to a heart transplant, I hope this post helps some with choosing a transplant center.
Choosing Our Center
When we found out Wilder would eventually need a heart transplant, we first had to choose a transplant center. The team at our home hospital, OU Children’s, suggested a few options, but ultimately strongly advised we pick a center where we would have support nearby if possible.
We were informed we would need to move close to the center or be prepared to temporarily live nearby when Wilder is placed on the waiting list.
Talk about pressure! We had to make a major decision in the middle of coping with our new situation.
If you live near a pediatric heart transplant center, this decision will likely be easier. Since there are no pediatric centers in Oklahoma, here are the factors we considered:
Initially we planned to move our entire family near the center we chose. We looked into cost of living, employment opportunities, schools, and area attractions in different metropolitan areas. Ultimately, we decided that our family will live separately during the waiting and immediate recovery following surgery.
(It’s possible we will change out minds, but this is where we’ve currently settled.)
Most transplant programs require the patient to remain within 1-2 hours of the center at all times once listed. We decided our family would be separated. We wanted to be within driving distance of home to allow for a long weekend visit. This limited our options to five possible centers.
Every center says their program is the best – and you certainly want your team to be confident – but they can’t all be the best. The Scientific Registry of Transplant Recipients has an easy to use tool to assess centers on their pre and post-transplant survival rates and wait times. We narrowed down our options to just two using this tool.
It’s not very scientific or logical, but once we had our short list, we read reviews, found people’s journeys on Facebook and ultimately went with our gut. We settled on Texas Children’s, with every intention of trying our second option if we were not confident after our first appointment.
We have only had one appointment with TCH at this point. While it was overwhelming, I felt the team was knowledgeable, kind, and efficient. Plus, they were honest and straight-forward, which I appreciate.
We will most likely continue our journey with TCH, but you can change centers if you later determine the level of care is not up your standards.