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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (377)Comment receiving replies
@bluegrasspv2018 Great Attitude!.. Almost my story.. was dx in 1992 with ET been on "chemo pill" (my name for it too) since then, and now at 68, have converted to PV and waiting to see at next blood draw if something else pops up! I still work full time as a Nursing Director at a home health agency and lately have been battling long covid : ( . This just means MORE fatigue. I find the immune system does not work well enough to kick things out quickly once you get sick). Been fighting for a long time, and taking it all in stride.. still walk the beaches, and hang out with friends, every day is a gift - keep your loved ones close and try not to isolate huggs
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@leene808
Hello my name is Annette
I’ve been diagnosed with Jak 2 and ET. The fatigue is for really. I have to live a normal life and still feel this way. It comes and goes and I can be myself. Then just drop with tiredness. Then I get this heavy head. Really hot a head ache pressure head ache. Do you get confused when you have to multitask. Or does loud sounds and touch amplify.
I’m cold all the time.
It’s hard I have to deal with all these things and still work and live a normal life. Not knowing if this is normal. I’m on 325 mg of aspirin 1 dx. 500 Hydrea 2xdx am pm.
My palettes came down to 385 that’s good but still feel good days bad days.
The dr smile and move on.
I get it I am one that needs to know. If this is my new way of life. Drs say everybody body is different Ugh Frustrating Annette