Thursday, January 24, 2013

November 10, 2012 - Support Group Meeting

Short post for today. First, some real time news. I recently heard from our London correspondent, Nicola. She has been participating in the CPHPC trial through the National Amyloidosis Centre in the UK for almost four months, and her latest lab results show either improving or stable kidney function. Hooray for good news! Let's hope this positive trend continues.

And in even more up to date real time news, the first reported case of fibrinogen amyloidosis in Latin America has been reported, in a 52-year-old Brazilian woman. Here's a link to the abstract of the article, which was published online yesterday:

Now back to the not so distant past . . .

On November 10, 2012, Mom and I attended the local amyloidosis support group meeting. I believe this was only the second meeting Mom had ever attended. I counted a total of 48 attendees at this meeting, including Dr. B from Mayo Rochester, Muriel Finkel, and 21 patients (4 localized, 3 familial, and the rest primary). That was the largest Dallas support group meeting I have ever attended, and I think we actually exceeded the official capacity of the room. Two new patients really stood out today.

First was a 32 year old man who had AL amyloidosis with heart, kidney and GI involvement. He was undergoing chemo treatments and was in a wheelchair. It’s always a jolt when you see or hear about someone so young getting amyloidosis.

Then the saddest case today was a man in his fifties who was very healthy and active up until earlier this year when he came home from an exercise session at the gym and could not catch his breath. He has heavy cardiac involvement, can’t walk 30 feet without resting, and has lost 70 pounds this year because he can hardly keep any food down. Watching him come back into the meeting room after lunch was like watching a very frail, much older person trying to walk a few steps after getting out of a wheelchair. It was heartbreaking to hear his daughter tell their story, and at one point she basically asked if she would ever get her father back.

Next up: Can anything else go wrong with dialysis?

No comments:

Post a Comment