Friday, December 21, 2012

August 2012 - Dialysis and transplant update

This post will cover the rest of August of 2012.

August 8, 2012 (Wednesday): Mom still has very little energy after the surgery on July 31, and she's starting to look a little jaundiced (yellow). Laura took her to the peritoneal dialysis (PD) clinic to have some blood work done.

August 15 (Wednesday): I went with Mom to her follow-up appointment with the surgeon who did the talc pleurodesis surgery (talcum powder and Fix-A-Flat). He said everything is looking good, and she can start peritoneal dialysis training whenever they need her to. The longer they wait, the better. Mom is still very tired and cannot walk very far at all without resting.

August 16: Mom met with her nephrologist (Dr. S) at the PD clinic. He said her numbers are ok and there is no need to start PD training yet. They'll check her again in about two weeks. Her recent exhaustion was likely due to being low on iron, and they gave her a Procrit shot at the PD clinic. It was a night and day difference comparing how she felt today vs. yesterday. I asked her if she started feeling better after the Procrit shot or the dialysis news, and she said it was a combination of the two.

August 28, 2012 (Tuesday): Remember the series of appointments Mom had in July regarding being evaluated for a kidney transplant? Her transplant coordinator called her today with some news. She has been approved for a kidney transplant, but only with a living donor. (The success rate is higher with living kidney donors compared to cadaver donors.) Although this was disappointing news, in some ways it makes sense because the wait would likely be two to three years before she would get a cadaver donor.

So now we need to start thinking more seriously about finding a living kidney donor. I'm out, since I also have fibrinogen amyloidosis. My sister Amy has tested negative for the mutation, but she had gestational diabetes during one of her pregnancies and diabetes is one of the conditions that prevents someone from donating. My sister Laura has not been tested for fibrinogen amyloidosis, but she has some health issues of her own that would likely rule her out, although she has those pretty well under control right now.

August 29: My uncle's wife and a friend of theirs (MK) that we have known for a few years came to visit Mom today. When Mom told them about the transplant situation, MK spoke up and said she would be willing to donate. Wow, we weren't expecting that. MK said she has always felt like if the situation arose and she knew someone who needed a kidney that she would be willing to donate.

So we finish August with Mom not yet needing to start dialysis. She's approved for a kidney transplant but only with a living donor, and a friend of the family has volunteered to donate. Remember when I suggested you fasten your seat belts as we entered July? As we enter September, be sure it has a shoulder harness and isn't just a lap belt like they have on airplanes.

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