Saturday, December 19, 2015

Dallas Support Group Meeting: November 14, 2015

Today's post will cover the Dallas support group meeting I attended on November 14, 2015. If I counted correctly there were 29 attendees at this meeting, not counting the two doctors. The main guest speaker was Dr. G from Mayo Clinic in Rochester. He gave a good presentation about amyloidosis that mainly covered AL and ATTR amyloidosis and the various treatment options for those types, including currently active clinical trials. The other guest doctor was Dr. Q from MD Anderson in Houston, who I believe came at the suggestion of one of his patients who was also in attendance. MD Anderson is developing some amyloidosis expertise in diagnosing and treating mainly AL amyloidosis patients.

Of the 29 attendees, there were ten with AL amyloidosis, four with familial types, two localized, and one with wild type TTR. The remaining 12 attendees were caregivers, friends, or family members. Four or five people were attending their first meeting.

Although one of the facilitators of the support group told the group about Mom's passing near the beginning of the meeting and said some very kind words, I knew I would have to speak about it when it came my turn to talk about my experience with amyloidosis. I started fine and got through the story about how Mom's diagnosis came about, and her going on dialysis, and being on, off, and back on the kidney transplant list while dealing with various other health issues. But I struggled a little when I started to say that everything seemed to be going fine until the day she died unexpectedly due to the ruptured fistula. I had to stop for a bit, took a breath, and continued with the story. That led into my talking about what I had learned about ruptured fistulas since then, which I will discuss in a future blog post.

So I made it through my first support group meeting since Mom's passing. Maybe the next one will be a little easier for me. Or maybe not.

This post will most likely be the last one of 2015. I plan on starting 2016 with the usual year in review post, and I know there are a few articles I still need to review. I do have a few other topics planned for blog posts, so my goal is to continue posting at least monthly.

See you next year!

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