← Return to PV and fatigue

Discussion

PV and fatigue

Blood Cancers & Disorders | Last Active: Jul 14, 2023 | Replies (92)

Comment receiving replies
@sap21981

I must say… actually talking with people that have it makes me feel much better emotionally. My anxiety was through the roof. I’ve had to stop looking things up online because that was making it worse. I agree that the palpitations I’m feeling have to do with how thick my blood is. I wish they could do the draws quicker than once a week to remove it faster but I’m sure they have their reasons. It definitely doesn’t make me feel great. Thank you for reaching out. I am grateful to have this platform to talk.

Jump to this post


Replies to "I must say… actually talking with people that have it makes me feel much better emotionally...."

I can't imagine how scared you are with 2 young kids. I have 3 but they're all grown, I haven't told my grands yet, I won't use the C word, I'll call it a blood disorder so I don't scare them.
I was diagnosed in April, My GP caught it in my annual physical so was at 18.3 and feeling like total crap with bad headaches, fatigue etc.
You will feel MUCH better once they get your numbers down. I was at 12.1 last visit and we did a draw, my oncologist wanted to take me down to 11. I know now it's definitely too low for me
My next visit is coming up, we waited a month this time. I'm sure it will still be in the low/normal range and I won't do a draw but I'm going to ask for a Saline infusion. I've read they help and you can ask about it to help you feel better after each draw.
Bringing me down this low put me in an anemic state so once that stabilizes I know I'll feel much better consistently and will have found my "new norm".
Do you have any family members or friends near you that can help when needed? I won't lie the fatigue can knock me down at times but I'm also 60 so have many years on you and that needs to be factored in.
Drink TONS of water and move a lot, I walk all the time. Keeps the blood flowing. Are you taking a low dose aspirin?
Just saw my GP for disc issues in my neck, he truly feels once I'm stabilized I'll only need blood draws a few times a year, even 2. We looked over my counts since 2020, it shot up just recently. I had been a regular with donating blood prior to covid, that was keeping this at bay. But 15 is definitely too high for me because for 2 years I complained of crashing headaches.
Good luck, you'll be fine, this isn't life threatening if you take good care of yourself. I'm doing acupuncture and hypnosis as well. I don't want to go on any meds, my GP and Onc agree I don't need them now. I'm blessed with an amazing family who support me my best friend.
I hope you have a good support system and this forum is one of them. It's been a godsend for me.

Keep the faith, it takes a village!