Scarred I have pv 29 year old male

Hi josh. I was frightened when not yet diagnosed.  However, after familiarizing myself with the effects of PV, I realized we can lead a normal life. We usually die of some other illness in the end. I was diagnosed six yrs ago, and have carried on as before. I had just retired at age 66, and it was easier for me to find the time to go for blood draws, tests, etc. Also, being past 65 gave me the right to get Medicare which made it less expensive to visit the Hematologist, etc. I suppose a younger person can always get some help from social security? Of course, there shd be no need to quit your job. I do find that I get more tired than before being diagnosed, but If your job has normal hours, you can still get plenty of rest. Other than that, once you are on medication, it shd control the disease. So far, there is no cure, but in future, there may be. They are working on finding one. I hope you are seeing a Hematologist.

Best wishes,

harrishill  

Hello Josh

l was 30 when diagnosed with PRV, now 28 years ago with very similar readings to yours - l was a blood donor at the time which was how l got picked up.

in those 28 years my treatment has been a daily aspirin and a 3 monthly venisection and a yearly visit to my haematologist.

l've played sport, participated in 50km walks without any effects from PRV. l believe keeping fit and healthy, eating well, not drinking too much, not smoking are important factors in longevity for everyone but particularly with people with PRV who are more susceptible for having DVT's, strokes etc.

The impact on my life of PRV has been relatively minimal and something l don't think too much about apart from having my aspirin when l brush my teeth in the morning.

All the best mate

Paul 

Hello Josh,

You have been occupied with a low blood count now for several years and this does not seem to be affected by your recent tests.  Because PV is such a rare disorder not a great deal is known about it although recent research is beginning to alter this.  This rarity often affects people's judgement because of the lack of information that is available.   The best advice I can offer is to settle down again, wait and see what information is available from your new tests and don't be afraid to put questions to your doctors if needed.  Your readings can always vary up or  down, depending on different factors that may affect your life-style.  Some of the replies you have already received should be absorbed as making real good sense.  God luck.

Peter.

I’ve had a bunch of lab work done my hg has dropped to 15 and hc 43 mu jak test has come back negative my hematologist doesn’t think it pv he has released me with a clean bill of health.