Monday, November 26, 2012

November 12, 2011 - Amyloidosis Support Group Meeting

While looking through the notebook I use to keep notes of amyloidosis support group meetings and amyloidosis-related doctor appointments, I realized I totally skipped over the support group meeting in March of 2011. So this post will actually cover two meetings. (Well, three if you count the one I missed.)

March 12, 2011

Mom and I both attended the support group meeting in March of 2011. It was Mom's first meeting, so I was happy to finally introduce her to the group since I'd been talking about her for a year. The medical guest at this meeting was Dr. M from Baylor, who was also the medical guest at the first support group meeting I went to in March of 2010. There were a total of 29 attendees, including Muriel Finkel. Since this meeting was about a month after I had tested positive for the fibrinogen mutation, I got to announce that news to the group after I told Mom's story. Counting me and Mom there were 12 patients plus one other person there on behalf of her mother. One man had just been diagnosed with amyloidosis 10 days ago and was headed to Mayo Clinic in Scottsdale, AZ for an evaluation the next week. I'm not sure if I have mentioned her before, but there was a woman with familial amyloidosis who was initially misdiagnosed with AL (primary) amyloidosis and started on chemotherapy. She did develop some neuropathy as a result.

The most interesting story was from a man who was only 37 years old. He had been very active including being a soccer referee and felt fine, but in March of 2010 he found himself getting tired more and more easily such that three months later he could not walk up his driveway without stopping. He was eventually diagnosed with amyloidosis in August and was evaluated at Mayo Clinic. He was having a good response to chemotherapy at the time of this meeting. His rapid decline in energy is actually quite common in cases with cardiac involvement. One of the articles I read said cardiac amyloidosis is more readily noticeable in people who are very active and get a lot of aerobic exercise. I'm guessing that's because they push themselves more and will quickly notice the decline, whereas a sedentary person may not notice how much less energy they have until it starts impacting their sedentary lifestyle.

June, 2011

We didn't attend this meeting because we were in Jamaica, mon. 

November 12, 2011

Mom did not attend this meeting because she and Ed had been in Sealy, TX the night before for an 80th birthday party for a friend of theirs who sometimes travels with them. (The birthday boy allegedly did The Chicken Dance.) There were two medical guests at this meeting, Dr. G (cardiologist from Mayo Rochester) and Dr. B from the Baylor stem cell transplant group. Including the two doctors and Muriel Finkel, there were 38 people at this meeting. There were 16 patients there, including me. The soccer ref from the March meeting was there, as was the woman with familial who had been mistakenly diagnosed and started on chemotherapy. She recently had a pacemaker installed and was feeling much better. Considering her age (88), she seemed to be doing great.

I was very interested in hearing the cardiologist from Mayo discuss how amyloidosis affects the heart. Although it is rare to have significant cardiac involvement with fibrinogen amyloidosis, it has been documented. (See the article "Cardiac Amyloidosis with the E526V Mutation of the Fibrinogen A alpha-Chain" on the Resources page.) I had already learned a little about cardiac amyloidosis from the familial meeting in October, so I knew that amyloidosis causes the walls of the heart to get thicker and lose some elasticity. The heart muscle itself is still strong, which is why the ejection fraction (a measure of what percentage of the blood in the heart gets pumped out with each beat) may be normal in a heart affected by amyloidosis. I had heard or read that some biomarkers may be a good indication of cardiac involvement, but when Dr. G talked about those (BNP and triponin) I didn't get a clear indication that that was the case because, for instance, BNP can be affected by so many other things and it can vary considerably from week to week. I asked her about those biomarkers specifically after the meeting, and she confirmed that there really is no obvious measurement that can be done to determine the extent of cardiac involvement. It takes more of an overall assessment, including things like an echocardiogram, electrocardiogram, stress test, etc. So it looks like keeping a check on the heart will not be as easy as keeping a check on the kidneys, which is simply an annual check for proteinuria or elevated creatinine levels. That's something to keep in mind going forward, for Mom more than for me at this point since she already has kidney involvement.

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