Monday, December 24, 2012

September 2012 - Transplant and moving news

In the last episode of As The Amyloid Turns, we learned that Mom has been approved for a kidney transplant but only with a living donor. Then the next day a friend of the family volunteered to be a donor. This post will cover the first half of September 2012.

I can now identify the potential living donor (previously identified as "MK") as Marqueta. Over the next several days I did some research on living kidney donation and sent Marqueta a couple of links. I felt it was best for her to learn all she could before starting down that path. First was the site, which  gives a good overview of the process. While looking into living kidney donation I also learned about paired kidney donation at the site Paired donation is where you have two potential kidney recipients (A and B), and they each have a living donor who is willing to donate a kidney. Recipient A's donor is not a good match for A but is a good match for B, and recipient B's donor is not a good match for B but is a good match for A. If all four parties agree then the donors can be swapped between recipients. So two people get kidneys from living donors immediately, instead of waiting for a living donor who is a better match.

In early September Marqueta faxed her living donor application to the transplant center, but on September 10 we found out that she can’t be a living kidney donor because of an anti-inflammatory medication she is currently taking. 
Marqueta is planning on asking her doctor if there are any alternatives to her current medication. We were all obviously disappointed with the news that she can't donate, but there is still a little hope.

September 12, 2012: Today I learned some exciting news via the familial amyloidosis support group. Our very own Nicola Lloyd, who lives in South Africa and has been diagnosed with fibrinogen amyloidosis, will be moving. (That by itself is no big deal.) To London. (Ok, that’s quite a change.) She’s moving to London to be on the CPHPC treatment being administered by the National Amyloidosis Centre in the UK. How cool is that? Previous updates in this blog regarding CPHPC can be found here and here. A very interesting journal article about the initial use of CPHPC in 31 human patients (six with fibrinogen amyloidosis) from 2001 through 2006 can be found here: The kidney function in the fibrinogen amyloidosis patients on CPHPC was significantly extended compared to patients who were not being given CPHPC. So we certainly hope Nicola has similar or better results.

Her treatment consists of two CPHPC injections per day. She’ll be having periodic SAP scintigraphy scans which graphically show the amyloid load in the body, and more frequent tests to monitor her kidney function. So now we have two trendsetters in our own little world of AFib patients. First there was Cathy Tidwell, who had the first liver-only transplant for fibrinogen amyloidosis in July of 2010. And now we have Nicola Lloyd taking part in the latest CPHPC study.

Next up: How is our pre-dialysis patient feeling?

No comments:

Post a Comment