Wednesday, December 5, 2012

February - March, 2012 - The D word

This post will cover a few events from March of 2012. (Incidentally, it took 25 blog posts to cover 2010, and only 9 posts to cover 2011. That downward trend will definitely be reversed in 2012, in case you're wondering.)

March 1, 2012  --  I went with Mom to her nephrologist appointment today. We told Dr. V about the denial for a liver-only transplant, and that the committee recommended she try for a kidney transplant. Dr. V felt like Mom's kidney function was low enough now that she would qualify for a kidney transplant, so we got another kidney transplant application to complete and submit.

Dr. V also told Mom that based on her most recent lab work and how things are trending, they needed to start thinking about dialysis over the next several months. Mom's decision on which type of dialysis she chooses to try (peritoneal or hemo) will determine what has to be done to prep the body for dialysis (catheters and such). Since Mom had already been to the class about chronic kidney disease in October of 2011 and we were still leaning toward peritoneal, she wanted Mom to visit a peritoneal dialysis clinic to learn more of the details about peritoneal dialysis.

March support group meeting  --  Mom and I both missed the amyloidosis support group meeting in March due to our travels. I was in Charlotte and she was in Hawaii.

March 23, 2012  --  Nicola Lloyd informed me that one of her relatives had tested positive for the mutation but was currently asymptomatic, and another relative was planning to be tested soon. It's good to hear about people being proactive about genetic testing, since that will likely eliminate a lot of unnecessary suffering. She also said she would find out soon if she was going to be part of the upcoming CPHPC trial being conducted by the National Amyloidosis Centre in the UK. Since that is the only drug trial on the horizon that would treat fibrinogen amyloidosis, these human trials with CPHPC are exciting news for us aFibs.


So about a month after being told she wouldn't qualify for a liver transplant, Mom is told to prepare for going on dialysis. We weren't expecting to be faced with dialysis this soon, but perhaps that episode in Russia last July accelerated things a bit. Again, that's something we can never know for certain. But Mom's not letting any of this amyloidosis stuff slow her down at this point. In March of 2012 she and Ed spent two weeks in Hawaii, and less than 48 hours after returning from that trip they departed for a two week cruise around the Yellow Sea, with ports of call in Vietnam, Korea, China and Hong Kong. At this time they had already booked a Caribbean cruise in May, and later they booked another trip to Hawaii in June. That adds up to three weeks of cruising and three weeks in Hawaii, all in the first half of 2012.

Next up: Learning about peritoneal dialysis

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