PV and fatigue

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.

Hi @casevin7 JAK2 is an acquired mutation so it is possible to develop it in the future. But it’s not something to dwell on. It would drive us all crazy trying to predict what mutation could happen in any of our millions of cells.

While the JAK2 mutation isn’t passed down generationally it possibly may run in families. The suggestion from some research is that there “could” be a link through generations of being potentially genitally susceptible or there could be a vulnerability in a genetic pattern that might run in families. Mostly they’re just random: a stray gamma ray passing through the earth, a DNA strand that didn’t split perfectly, who knows… but my hematolgist said it perfectly “S*** happens” and there’s just no point dwelling on the hows and whys.
https://www.healthline.com/health/myelofibrosis/what-is-primary-myelofibrosis#symptoms
With your familial history of blood cancers it’s pretty reasonable to want to know what could potentially happen down the road. Would you be open to getting a second opinion?

Are you following any treatment plan besides the occasionally phlebotomy? Any aspirin therapy or Hydroxyurea?

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.

Make sure you start taking a blood thinner this is know joke. I have had pv for 6 years and almost died 4 years ago because I developed a blood clot in between my heart and lungs

I have pv cancer and am experiencing breathing issues. Evan with my oxygen level saying I'm great. But still not getting enough air

Hi @draney, not getting enough air can sure make a person feel panicky. You have Polycythemia Vera and unfortunately one of the side effects can be a shortness of breath. Red blood cells carry oxygen through our body. But in the case of PV too many blood cells are ‘crowding the Highway’ and not enough oxygen is getting through. Another thing to be aware of is that PV can also impact the spleen causing it to work overtime and that in turn can enlarge that organ. Do you feel worse when you’re lying down or after eating?

It’s very important to drink plenty of water during the day and ideally a person should aim towards at least 64 ounces. I know that seems like a lot of water but it really helps in keeping the blood thin too and all the systems flushed. Start slowly, increasing the amount daily. I found that room temperature water is much easier to get down in larger volumes.

I read in your other replies that you’re on a blood thinner and Jakafi to help control the overabundance of red blood cells. Are your blood numbers staying at a good limit now?

Yes my blood cell count checks out very well, I drink plenty of water that's for sure thank goodness I enjoyed it LOL. I had a major blockage from the heart to the line I had a pulmonary imbulism. Just lately I have been experiencing more trouble breathing more pain in my head, I have probably had PV I think 15 years of my life.

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.