PV and fatigue

I was diagnosed with PV last week after a long bout of dr appts and knowing I shouldn’t feel so bad. I’ve struggled since at least 2020 because I remember a specific instance that makes sense now, but I am awaiting my oncologist appointment as there is a long wait. I was wondering how anyone helps with the shortness of breath? I try breathing exercises but I will work myself into a panic attack when I feel I am not breathing well. The diagnosis was very reassuring because it shows me I’m not crazy but I am nervous now. I am 25 and otherwise healthy.

Yes shortness of breath comes and goes. I still walk 9 holes of golf and stop when I need to. I feel much better when I keep active and listen to my body. I hope you can find what works for you.

I feel for you. I also have shortness of breath especially at night when I go to bed. And if I have to get up, it takes a while to regain my breath on returning to bed. I was prescribed an inhaler but had a reaction to it. I started walking the neighborhood again and that has helped ever so slightly. But talking on the phone is painful trying to breathe and talk. Last time I had this issue my gall bladder was about the explode and was pushing against my diaphragm. I suspect my spleen is enlarging, but doc doesn't agree.
Good luck to you

Thank you for that reply. I have a lot of trouble at night as well, I don’t breathe well laying down for bed and will get worked up. I do have an inhaler as well and I use it, but I don’t want to use it as often as I do. I suppose I do need to be more active to maybe build my lungs up a bit, covid had a go at them as well. I find that talking to friends especially when I am into the conversation, it is so frustrating and painful to have to stop and catch my breath like I was just running instead of chatting. I’d like to look into the enlargements of organs myself as I’ve read about PV and that. I hope this finds you healthy.

I think it can be simplified down to just resting when you should and stopping for a bit. That is a great point. I’m glad you can walk the 9 holes, I’m a cart rider myself! I need to give myself the grace to stop and regroup and move forward.

I'm a 48 year mother of 2 and just received the diagnosis. To say I'm scared is an understatement. Found out I had the disorder when I went to ER for migraine. Definately feel the fatigue and some other minor symptoms. Had my first bleed yesterday to start bringing my levels down. Hemoglobin was at 21. Any suggestions on how to handle this situation, especially until they get my levels down? I am scheduled to have 5 more bleeds or the next 5 weeks.

Hello @sap21981 Welcome to Mayo Connect. I’m sure you’re in panic mode right now! Being a young mother of two children and finding out you have a blood disorder fills you with a sense of fear. I’m going to introduce you to other members in our support group who also have been diagnosed with Polycythemia vera. Some have had it for years, others are just at the beginning of their stories. I’ve provided a couple of links below so that you can connect with fellow members.
The first one I listed is PV and Fatigue where you’ll meet members @yitz @jerrlin @cindy316 @inevanmac @jjdownes01 @albertedward @casevin7
https://connect.mayoclinic.org/discussion/pv-and-fatigue/
Other members @pamdg @beebo @splashgirl1961 @wr61 @treeore @dale1k and many others are active in the discussion on “ I am curious: What symptoms did everyone have in the beginning for PV?”
https://connect.mayoclinic.org/discussion/i-am-curious/
Have you gone through any genetic testing to find the cause of your PV? Was the JAK2 gene mentioned in the diagnosis?

Thank you for responding…after about a month of fighting with h the insurance company to approve testing, I did have JAK2 test which did come back positive. My hemoglobin levels are at 21 and hematocrit is 68. I’m concerned about clotting while waiting for levels to come down from phleb draws. Also, I’ve been experiencing what feels like pretty regular palpitations. Not sure what’s causing it, but I did mention it to my hematologist and he didn’t seem to concerned.

I was diagnosed a year and a half ago. It is normal to be freaked out by being diagnosed with a condition you probably never even heard of before. I was too at first. Your #’s are pretty high but so were mine at first. They came down after several phlebotomy visits which I was doing every two weeks. Both your fatigue and palpitations are probably due to your blood being so thick for a long time. Once you get it thinned out you should start feeling a lot better. My doctor then put me on a med called hydroxyurea and now I’m only needing a phlebotomy about every 5 or 6 months. I don’t have any problems with that med and it does a good job of keeping my #’s down. I get a blood test once a month now and my trigger for getting a phlebotomy is when my hemoglobin readings go above 17. Hope this helps. Don’t stress out- it’s not really all that bad.

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.