Tuesday, October 16, 2012

Transplant Team

Today felt like a big day.  We met with the organ transplant team in Iowa City, PLUS had Blake's monthly clinic visit.  It was a lot of stuff packed into five hours.

We had some transplant education, met with the transplant nephrologist, the surgeon, a financial gal and a social worker. I think Aaron and I knew a lot of the information we were told, but some of it was new.

Here are some highlights:

-Before we do ANYTHING transplant-wise, Blake's bladder augmentation has to be done.

-A living donor is our best option, but Blake can also be placed on the deceased donor list. Pediatric patients go to the top of that list, so if we have to go that route, that's a good thing.

-Aaron and I didn't get any testing done on us.  Yet.

-Blake will get one adult kidney.  After talking to the surgeon, it sounds like Blake's old kidneys will both be left in him.

-The first 48 hours after transplant will be very tough.  Blake will be left sedated and have a breathing tube down his throat and be hooked up to various machines.  The surgeon warned us that it was going to be tough on us.  All in all, she said to plan on about 2 weeks time in the hospital.

-As for the donor, they really are looking for a young, healthy kidney.  You have to have Type A or Type O blood type.  A lot of testing and evaluations are done.  Kidneys are not the easiest things to match.  For the donor, they are usually in the hospital for 2-3 days, but can't lift anything for 4-6 weeks. This could be a challenge for Aaron or myself...

-The financial thing was just a confusing ball of confusing to me!!  If anyone out there is well versed on the ins and outs of medicaid and medicare please let me know.

-We learned a little about anti-rejection meds.  That's all I'm going to say about that right now.  YIKES.

Aaron and I feel like we have a pretty good handle on what's going to happen.  We hope that we can maybe do the transplant over the summer.  Hopefully things work out that we can find a living donor and Blake continues to do well with his dialysis and we can do that!

I will leave you with Dr. Blake listening to Daddy's heart during clinic time today.  


Mary or Jerod said...

I'm glad to hear all of this! I miss you guys, it's been way too long, let me know if you want to get together for dinner or something :)

Sarah R said...

Hey, would you like me to hook you up with the Facebook group I am in of parents of kids with renal failure? Lots of post-transplant kids. A while back, everyone shared pics of their kids immediately post-surgery, which was eye-opening but helpful. I think it might be a hidden group, so I would have to add you. Just let me know!