PV and fatigue

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!

Thank you for your kind words…all this support is amazing already. Definitely looking forward to feeling better. We are any active family and I don’t have time to be so tired all the time. Brain fog/dizziness happening way too much.

I can definitely relate to being a little freaked out. I was only 35 when I was diagnosed. I remember my heart sinking when I was told. I was thankful my mother came to that appointment with me because I really don't think I could have driven myself home. I am now 43 and have had 5 different hematologists over the last 8 years. I have had ups and downs with my symptoms and my levels going high. But just know that is manageable and it is possible to still live a normal life. I would like to say that if you need to talk at all to reach out at anytime!

Thank you for reaching out and sharing your story. Before the diagnosis, I’d never even heard of the disorder. I truly hope my hematologist is on top of things as I would hate to have to switch that many times, BUT I have no problem doing so if I feel I’m not getting the care I deserve. How long did you have symptoms before you were actually diagnosed? I’ve only had one bleed and am scheduled for 5 more in the next 5 weeks to get my levels down. Not sure how long my levels have been elevated so I’m really hoping my organs are not damaged from pumping thick blood over that time. How are you feeling now?? Hopefully you are doing well.

Hello @sap21981. I'd like to add my welcome to Connect along with @loribmt. As Lori mentioned, there is an existing and active discussion on this topic so you will notice I have moved your post here to join others:
- PV and fatigue: https://connect.mayoclinic.org/discussion/pv-and-fatigue/

I'd like to bring in members @yitz @jerrlin @cindy316 @inevanmac @jjdownes01 @albertedward @casevin7 who @loribmt mentioned to you.

Hello I'm a Newby too. I'm 65 but have been telling doctors since I was 60 I just didn't feel good or myself. I have other issues that we all that were the causes.
I'm under a 6month period of observation and labs. If my levels are still high my doctor will confirm the diagnosis. I did not have a positive for Jak however my doc said about 20% false neg. My 6 month period ends in Sept so she will decide what treatment.
The exhaustion is rough. Sometimes I wake very tired but there are times I'm moving right along and suddenly my energy disappears and I feel like like I've bottomed.
I look forward to Sept, to at least start treatment.

I hadn't heard of it either. Looking back I think I had symptoms for many years but they just prescribed antibiotics for my white counts being elevated. Did they check your spleen? I have to go in every couple of months to get them checked and usually need a phlebotomy everytime. The reason I'm on my fifth hematologist is 3 moved out of state and then my insurance changed to provider specific so her to change.

My doctor felt my belly but didn’t say anything about it. That will be a question I have for when I see him again. My liver enzymes were high but I’m guessing that has to do the thickness of my blood. I meant to ask him about it at appointment, but forgot.

I feel the waiting periods are just the worst! Hopefully your symptoms haven’t been to bad. Have you had blood removed? How are your H+H levels?

Not blood letting yet, just labs until Sept. My RBC &HT are flagged. Nothing abnormally enlarged yet though I do have unremarkable cysts in stomach and lower lungs. My spine is the source of focus from injuries and surgeries which did alot to confuse us along with osteoporosis in ranging stages over the years. I'm looking forward to feeling better as I read on these posts. I'm glad I found this site.