June 9, 2012 -- I went to the amyloidosis support group meeting today. As is usually the case, Mom could not attend due to traveling, this time to Hawaii. The speaker was Dr. M from Mayo Clinic in Arizona, and I really enjoyed listening to him. He explained complicated subjects very well and he was very entertaining. There were a total of 30 attendees at this meeting, with at least 14 patients. For some reason my note taking was a bit weaker during this meeting, such that I have no notes at all on nine people. So there were probably more than 14 patients.
A new family there was two sisters whose father has familial amyloidosis (one of the ATTR variants) and he has had a heart and liver transplant. One of the sisters had tested positive for the mutation (she's currently asymptomatic) and the other sister had not been tested yet. (Another sister not at the meeting has not been tested, either.) When one of them was telling their story, I could tell she was wrestling with some of the questions and issues that come up when knowledge about a hereditary disease is relatively new to family members. We were only able to talk briefly after the meeting, but I gave her my contact info and we swapped several emails over the next several weeks. Our situations are somewhat similar in that we both have a parent affected by familial amyloidosis, and we have both tested positive for the mutation but we are currently asymptomatic. So I think it did us both some good to be able to discuss our respective situations and share some information.
Someone who was not present at the meeting, who I really wanted to talk to, was a man who I knew was on peritoneal dialysis. Since I knew Mom would be starting PD in the next few months, I was wondering if he and/or his wife would mind if my mother called them to talk about being on PD, the logistics of dealing with supplies, what it's like to travel while on PD, etc. I got their contact info from the facilitator of the support group and sent them an email. They offered to have us come over for a visit and see his home setup, and we eventually found a date in July that would work for all of us. I'll talk about that visit in the next post.
June 28, 2012 -- Mom had the surgery today for inserting the peritoneal dialysis catheter in her abdomen. It was done on an outpatient basis, and there were no complications. (If you want to watch a video of that type of surgery, search for "peritoneal dialysis catheter surgery" on YouTube. There was almost no blood in the video I watched.) The PD clinic can start training her after that heals. At this point there is no rush to start dialysis, and the PD clinic has not given her a start date for the training.
As we get into July of 2012, please fasten your seat belts.