Polycythemia Vera

Well, I was only diagnosed two years ago so I am just a relative newcomer to all of this.

There are lots of people here who will be able to give you more reassurance than I can as some of them have been living with PV for many many years.

It is a strange disease because it affects everyone differently so symptoms that your OH may experience may not be the same that I do, for example. 

I am in my mid sixties and am fit enough to have emptied out two compost heaps and spread their contents over my quarter acre garden this week. There are a lot of diseases worse than PV, believe me.

Someone else will be along soon with their own take on PV.

Yes, my only slight regret is that I can no longer round the day off with a glass of wine.

Well, you have just started on what could prove to be a long road.  As Angela says, PV has many variations so I would suggest you wait for your haematological results for these will be used to diagnose and subsequently provide any recommended treatments.  It will require a little patience.  Each case is individually based on the tests carried out with treatments prescribed in accordance with the haematologist findings.  This doesn't happen overnight but an accurate diagnosis is essential.    It is not a lengthy procedure but the tests will need to be fully assessed.   If you have any concerns do raise these with your haematologist who will hereafter be the doctor supervising your partner.

I have lived with Polycythemia for many years now and properly treated, there is no reason why your partner should not do the same.  Take things as they come and try not to jump ahead of yourself.  Let the doctor do the thinking and learn to rely on your professional medics at your clinic.  PV is a progressive disorder with differing aspects and is a very rare and serious condition to cope with.  However, the right medical treatment can and will make a huge difference for you.  There is always some very great and knowledgeable advice from other PV suffers on this site for you to use but always discuss problems with your Haematologists.  They are the specialists with the experience and training to look after your future.   I wish you both well.

Peter.

Agree with Peter's comments (as usual well thought out and helpful), but one more thing to remember:

because this is such a rare disease, you may need to seek out an MPN expert rather than a general hemotologist/oncologist. Knowledge on the disease and treatment varies, so finding an expert that you are comfortable with is essential to managing your treatment. Good luck.

Hi Harvey this is a very rare disease. I think it's 2 in every 100,000 have it. Its shocking at first, but as Peter said, wait for the bmb results and see what your hematologist has to say. Some people do well for years on aspirin and phlebotomies, while others may need meds. Try and stay away from Dr. Google. It can confuse and scare you. There are many people here who can advise you. Good luck in your journey. Zap

Hi Harvey please don't worry. I was diagnosed with PV 41 years ago at the age of 27. I had two babies and a full time teaching job and put the severe fatigue I was experiencing down to a busy life. The job had to go but I have lived a good life with this disease. A healthy diet, exercise when able and rest when you have to. Good luck to your partner.