BMB on Monday
Hey there Jak2+ and aVWF disease 36M first diagnosed at 33, first elevated platelet count at 30 (misdiagnosed by a PCP). Per my MPN specialist, it’s likely the somatic mutation probably happened 10 or so years ago at this point. So long story longer - I’ve had whatever this is for a while now.
I’m diagnosed with ET, platelets over 1M and my current treatment plan is 81mg Aspirin and most of my symptoms are minimized. We monitor blood smears actively for any morphing of my red blood cells, white blood cells and platelets - still looks like the quality is good.
I’m finally getting a BMB on Monday and feeling a little anxious about it - less about the procedure and more about the potential outcome 🥴.
Anyone else just want stability? With all of these new tools to measure ongoing health I wish the system allowed us to participate in proactive collection and support (trackers, apps, etc.). Doesn’t feel like there is anything out there yet and I’ve been thinking about vibe coding something to help convert some of these negative feelings to positive action.