Prepare to die
Last updated: August 2023
When I heard that I had wtATTR-CM, I thought that I had to prepare myself to die. I am an Internist, and when I went through training there was nothing to offer. The mean survival was 2.5 years, and was often compared to pancreatic cancer. This was before tafamadis.
Triumphs and tribulations of the journey
I have seen five cardiologists now, have my care coordinated through an amyloid clinic, and have been roughly stable for about a year. But the shock was profound.
I had a spiritual and existential crisis that has made me reexamine my faith and belief system. I am shocked sometimes at how bad people are at listening to someone with a chronic condition. Comments like "keep fighting" and "live in the moment" in my mind just make things worse.
Finding light amidst the shadows
With a strong wife, a motivated spiritual support system, and the right medications, I have some good days. That did not used to be the case a year ago. They were all bad. Boy, does that mess with your head.
Anyway, life feels better. My primary symptom is fatigue, which limits travel a lot. If anyone has insight on how to travel despite the fatigue, I would appreciate your insight.
Thanks for listening.
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