I’d like to share my story, tho this may be a bit lengthy; I hope you don’t mind.
I’m a 65 year old male. I was diagnosed with PV around 5 years ago; the doctors thought that they had caught it relatively early. I was prescribed Hydroxurea (Hydra) , 500 mg a day, and also had to get a phlebotomy every 3 months to keep my levels where they needed to be.
Things were going as well as could be expected, until I went for a scheduled checkup back in January of ‘23’, and my hematologist told me that my ‘creatinine’ level in my kidneys, which is supposed to be at ‘1’ had risen dramatically, and with follow up readings over the next two days (through urine tests & blood draws) it showed the level was almost doubling every day.
I got ‘fast tracked’ into a teaching hospital in Worcester, MA.
For 10 days I sat, while 2 teams of doctors (and students !!) were trying to diagnose what was happening. They finally determined, through case studies going back to 1945 (!!), that in addition to the PV, that I had suffered from an IgA nephropathy, which is a disease of the kidney & the immune system.
It’s SO rare that they were able to find only 23 (TWENTY-THREE !!!) recorded cases of people having both PV & IgA from 1945-2016.
I ended up staying in the hospital for exactly one month, while they tried, through intravenous, to find a suitable blood thinner that I could take in pill form from home.
My nephrologist put me on a steroid, called Tarpeyo for a few months, and changed up my blood thinners, which I take due to blood clots in my legs & lungs. He took me off of the Tarpeyo after about 8 months because it was cost prohibitive (almost 17K $$ a month !!)
The end result of that hospital stay was that I ended up from having high platelet (or hematocrit ??) levels to being anemic.
YAY, no more phlebotomy’s !!

However, due to my increasingly high white cell count, last month, I had to get a bone marrow transplant.
They suspected that I might either be progressing towards having leukemia, or perhaps even worse, a more aggressive & dangerous form of PV (I can’t think of the name of it off of the top of my head).
Both tests, thankfully came back negative to those two possibilities, but the mystery remains. ‘Something’ is keeping my white cell count high, while now also my red counts are rising too !?!?
I had my first phlebotomy in
2 1/2 years last week.
They have increased my Hydra now to 500mg once a day, and then 1000mg a day every other day. I’m on 11 different meds right now (18 pills a day), and have the same symptoms as do the previous posters on this thread…mainly feeling lethargic most of the time.
I apologize for the long version of my story. I just wanted to put it out there. Thank for reading it.

And, most of all, good luck with your Mom. 🤞🏼🤞🏼😁