New - possible Polycythemia vera (PV)

Posted by deb232 @deb232, Mar 18 5:59pm

Hi my hematocrit has been high for a few years, and cardiologist suggested it see a hematologist. My pulmonologist did a sleep study and found I have moderate apnea., which he says could be a cause.
He also ordered Jak2 mutation test.
Results of that test should be in soon, and see hematologist this Thursday. In the meantime I'm reading everything online and stressing like mad!
I'm 77 and had breast cancer 28 years ago.
Thanks for your support in advance!

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Patty, Volunteer Mentor | @pmm | Mar 19 6:45am

@deb232 welcome to Connect. I relate! Waiting, and accompanying anxiety…it’s not a good look for me. If I deep dive into Dr Google, I focus on worst case scenarios and I also believe that Dr Google is a glass half empty sort of gal. Thursday will hopefully give you answers to your questions and hopefully you will find the answers reassuring.
Congratulations on your successful breast cancer treatment! It’s a good thing to keep in mind that your history of overcoming health challenges is amazing. It speaks to your strength and resilience as well as the benefits of medical science.
I’m always mindful of an internet meme that says “nowhere in the history of calm down has anyone ever calmed down by being told to calm down.” But if you can try to distract yourself from this anxiety you will feel better. Anxiety can actually make you feel physically ill. If you can back away from the search engine and do some self care between now and Thursday, I predict you’ll feel less anxious.
Please let me know how your appointment goes.

deb232 | @deb232 | Mar 19 4:25pm

Thank you so much for your helpful response. I used a lot of google as well as support groups in my cancer journey years ago, but it does reach a point when it becomes more obsession than useful.
My Jak2 mutation test came back negative, phew! See hematologist Thurs and possibly more tests, and hopefully phlebotomy soon to reduce heart risks. Maybe I'll even be allowed to donate blood.
Reading 95% of PV patients have the mutation doesn't mean PV can be ruled out entirely, but does help a bit with the anxiety.
Thanks again.

deb232 | @deb232 | Mar 19 4:27pm

I'm also using my new CPAP, which is 100% better than it was years ago, although it does have an adjustment period.

Patty, Volunteer Mentor | @pmm | Mar 24 9:30am

In reply to @deb232 "I'm also using my new CPAP, which is 100% better than it was years ago, although..." + (show)

@deb232
I’m glad that CPAP is working out for you. Thanks for getting back to me. Is your anxiety eased after your results came back?

deb232 | @deb232 | Mar 25 11:43pm

Saw hematologist and was diagnosed with secondary polycythemia. It's caused by ILD (I have systemic sclerosis) and apnea. Only treatment is CPAP - but not sure how long it takes to bring risk down.
Thanks for your support!
Still anxious about risk and sleepy all the time
getting used to CPAP.
How are you doing?
🙏