Hi Lori, long time no talk!

Wishing you a very happy & healthy 2024.

Wanted to give you an update, I DON'T have PV. I was misdiagnosed by 2 oncologist, finally a cardiologist I trust recommended a doc he works with and respects. It was Dr. Scola who finally listened to my concerns / hunch that perhaps I don't have PV (being Jak2 neg).

He immediately scheduled a bone biopsy after really LISTENING to me (gee, what a concept eh? 🤔).

That definitely showed I do not have PV. So 9 months later I'm back to square one of many tests, new docs etc. to try and determine what is causing the Polycythemia.

Moral's of the story:
* Always research; read read read, then read some more, knowledge is power.

* Be your own advocate and a strong one, write your questions down and ask every single one.

* Have someone with you at EVERY single visit, not if it's just a test, to go over results and discuss next steps type visits. Another set of eyes, ears and mouth to ask questions is very important.

*My best friend comes and she's so organized she types up a summary & my to-do's and emails me. She knows how overwhelmed I am and feeling crappy most of the time.

* Challenge the doc if you don't agree and absolutely get a 2nd, 3rd, 4th etc opinion until you find a doc you feel us listening. So many do not and far too many follow their "text books" where I feel that's very dangerous.

Many of us are not "normal", I mean that to be physically, mentally and spiritually "different".

These 3 factors play equal roles in our overall health, IMHO. You don't have to feel the same, I very much respect that.

My journey since getting diagnosed on Good Friday of 2023 has not been pleasant. Then to find out much of it could have been prevented if the 2nd oncologist had ordered a simple bone marrow biopsy. Not pleasant but you don't need anesthesia, the pain is a bit more severe when they suck the stuff out and its very quick. Not the drilling in part but it wasn't bad. I've had 3 kids naturally, I'd take the biopsy over that again any day. Why grandkids are truly a gift from God, plus all the fun and no stress when you deliver them back 😉 My grandson just got his license yesterday since he turned 17, now he can come see his Oma any time he wants day or night 🥰❤️

I'll be in touch, fairly extensive bloodwork has been done, no significant findings to explain excess HGB production. Next up sleep test, going round with insurance right now but has to be resolved, it's medically necessary.

Be well & stay warm!