Week Eleven - Choosing a Transplant Center.....

When our nephrologist first told me that our daughter would need a transplant, he only told me about our center.  He told me that they did 5 pediatric transplants a year, "And that's a lot." I asked about other centers and he mentioned a couple, one of which is 5 hours away, and one that is that is 10 1/2 hours away. When they scheduled us to see a transplant team, it was the local team, which is an hour and a half from home. We saw them yesterday (more in next post!).

Meanwhile, I went online.  I used (again) http://www.unos.gov/ to check into transplantation centers, and I learned quite a bit, some of which I might have been happier not knowing.  First, I learned that my neprologists exaggerates, to say the least.  Our center does 2 - 3 pediatric transplants/year.  They did do 5 once - in 1999.  The centers he mentioned do about 10 -15 each.  But I found another center, 3 1/2 hours away, that does TWENTY.  Their surgeons also do all of the local adult transplants, averaging 200 a year of those. So I gave them a call, sent them our daughter's records, and they said they would accept her - we go to see them August first. And the beauty of this center is that it is very near to my brother, and my sister-in-law.  So we'll have a free place to stay.  And support.  And home-cooked meals. We ARE allowed to multilist, and it may decrease our wait time.

But here's the catch:  Our nephrologist refuses to do ANY follow-up that she needs if she has her transplant there.  "I wouldn't be comfortable," he says.  "Why?"  "I'm not familiar with their protocols."  What?  There are ten antirejection meds (okay, a new one just got FDA approval 3 weeks ago, so 11).  Just exactly how complicated can this be?  And let me remind you that I'm a doc also.  AIDS has more than 11 meds.  Diabetes has more than 11 meds.  High blood pressure has more than 11 meds.  I treat all of that stuff, usually at the same time, so what exactly, again, is his discomfort?  I did not get an answer that really answered the question.  So now I'M not comfortable.

And the problem with this is, that follow up is BIG in the first few months.  Weekly.  Then biweekly.  Monthly.  And because her immune system will be suppressed by the antirejection meds, she will be prone to infections.  If she ends up in the hospital across the street from me with an infection and worsening kidney function, she would ordinarily be shipped to our local center.  If we go to the other place, we'd have to transfer her there.  If she goes by chopper?  I'm following in a car, 3+ hours behind, possibly in a snowstorm?  Ouch.  But.....if that happens, getting 90 minutes in a snowstorm isn't too easy either, and at least my brother and sister-in-law can get to the other center in a few minutes - it's three stops away on the train that stops right outside their door.

All of which begs the question:  Do I really want a doctor caring for my daughter who exaggerates and won't learn new things to take better care of her?

I'm thinking not.  And for the time being, he's going to be deciding about her dialysis?  Damn.  Damndamndamndamn.

DeeDee