So, we went off the Dallas to meet the transplant team at Baylor Hospital. It was a long drive from Austin with a very sick young woman in the car. We had to bring her oxygen concentrator with us because she only had a few bottles of oxygen.
We met with the transplant coordinator and the transplant doctor; we were very impressed with both and grew hopeful that this would be okay. However, we were so wrong on that front!
We met with the actual transplant surgeon who felt that she was a good candidate and we were told that they would present her to the committee the next day and let us know what we need to do afterward. We were driving home from Dallas the next day when we get the call that the committee had placed her on hold (they call it Status 7) pending more information about her health and her heart. So she is not listed, but is still being considered.
My daughter was so frustrated and scared after taking that call. She kept asking the coordinator what else she needed to be doing and not getting an answer. So it really felt that we were in “transplant limbo”.
After many calls and numerous questions, we finally learned that the committee was concerned about her heart health as it relates to survival of the massive surgery involved. Now, I am grateful that they were being conservative with my daughter’s life, but I was also frustrated by them. It felt that she was sick enough to need a transplant (she met their criteria) but she was too sick to get a transplant.
We remained in this limbo for many months; going back and forth getting heart caths and other studies done in Dallas. She even got admitted into Baylor once while we were there because her hemoglobin was too low. She had ABG’s done (which are no walk in the park), she had a right and left heart cath done twice, she had EGDs and a colonoscopy. She felt like she was a training tool for new doctors!
So what, you say, was the outcome of all of this? Well, so glad you asked. Let me tell you. She remained on Status 7 for 6 more months! Nothing was being done to or for her in those months. She was just in a holding pattern.
Part 3 of this saga will be up shortly, but just writing this has reignited my anger and frustration so I will end part 2 here.