Evaluation Day

So today was our transplant evaluation. We arrived at transplant services at 7:45 a.m. and we left from there at 3:00 p.m. Obviously it was a long day. We had been told that it is a shorter day for peds patients, but it didn't end up working out that way.

First we saw a video and slide presentation. The video was about the benefits of transplant, mostly discussing how much improved someone's life can be after a transplant, mostly if you have been on dialysis. They also discussed how important the post transplant medications are, but we already knew we would just be trading one set of medicines for another. And I've already told Katie that the number one cause of organ transplant failure is noncompliance with medications.

Then we saw the financial coordinator. There was a bit of drama over how our referral was worded but that got worked out before we left.

One of the nurse coordinators for the transplant service reviewed the questionnaire that we had answered for Katie.

We also were visited by both of the living donor coordinators. They told us that Steve can’t be considered as a donor because he is under 50 and has high blood pressure. It sounds like a strange rule and I’m not sure I understand but if he was over 50 and had high blood pressure under good control, then he could be considered. They had me fill out some information, and then later went over that with me. As I expected there was a lot of concern over the medicine that I take that is used to treat diabetes. I’m not diabetic and my blood work will bear that out, I’m taking that med for a different reason.

Then we had lunch, I’d like to say it was yummy but it was at the hospital cafeteria, so… not so much.

After lunch we saw the dietician. She really didn’t have any information for us, she took information from us, and was pretty pleased with what Katie gave her as her typical diet. I’m not exactly sure what her role is, but I suspect they see a lot of diabetic patients, and those who are less diet conscious than we are, so maybe they need more assistance.

Then we met with the social worker, again, I’m not exactly sure what her role is. She said she could help coordinate school issues but we have to get any “orders” from Dr. Mendley. I doubt that I’ll need her because I’m used to working with the schools, but we’ll hang onto her information. Both she and the dietician were very nice, and very knowledgeable, and not thrown by Katie’s non-kidney uniqueness.

Finally, we met with Dr. Eugene Schweitzer the surgeon. He was… ummm… different LOL, and not what I expected, but very nice. He didn’t really say much. He looked at Katie’s abdomen, and he checked her pelvic and ankle pulses because the blood source for the new kidney will come from the main arteries and veins serving her leg (on which ever side the new kidney is placed.) He seemed to say that he doesn’t actually do the surgery, that he just directs the pediatric surgeons, but Dr. Voigt (her urologist/surgeon) seemed to say that he would “be in the operating room.” I’m sure that will all get worked out.

And even though those things could have been accomplished in just a few hours, instead they took 7 hours.

So, what’s next. We’re not completely sure. The transplant center doesn’t deal with pediatric patients that often so they’re quite bewildered and “off set” when they have one. But they seemed to think that we should be moving forward with Katie’s work up. However, I think Nancy intended for us to wait until a donor is chosen. We’re now less than a month from our next appointment with Dr. Mendley which is when Nancy wanted to move on with the rest of Katie’s work up, so I’m not sure a donor will be chosen by then. We were told today that the first round of donor testing (blood work) takes at least a month (Nancy had said 2-3 weeks), my blood was drawn today so that clock is ticking for me now. My Mom has asked to be considered next, her questionnaire has been completed, and we hope to get her blood drawn in the next week or so.

I’m going to call Nancy tomorrow and discuss a few things:

1. That my Mom will be the second donor considered and not Steve, or my brother as I had told the social worker.
2. That we will need some help with school because we’re not sure Katie can make it through a whole school day.
3. And to see if she’s willing to schedule some of the rest of Katie’s workup now so that we can get rolling.

Any questions? I’ll do my best to answer them. You can post them here or email me at steamy2@comcast.net, if you want to reach Katie I’ll forward your mail to her, I just don’t want to post it here.