My partner has had slowly rising haemoglobin for about 6 months but it stayed quite borderline. Since Christmas, the hct and rbc have also been elevated. The gp has referred him on the nhs but the appointment wasn’t until August so we decided to go private.
The private consultant was very concerned by the high hct and my husband is now booked in for venesections and gene tests/epo tests. He had a heart attack last year (bloods normal at this point) and we are holding onto hope that it could be something to do with this or the huge array of meds he was on. I got the impression that the haematologist felt that pv was more likely.
I’m feeling in despair and so overwhelmed. We’ve had a year of health worries already and now this! He’s in his 40s with children and just wants to be around for them.
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Scaredalone
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Sorry to hear about the issues your husband has with the heart and now the possible PV diagnosis. The thing to know about PV, assuming he has it, is that this diagnosis is not the end of a story. It is the beginning of a journey. It is a journey that you can plan to last a long time. Due to the improvements in treatment people with PV can plan to live a normal lifespan.
You will likely have seen that PV and the other MPNs are considered to be "blood cancer." It is important to understand that PV is a chronic condition, not an acute disease. Many of us look at PV as cancer with a little "c" not cancer with a big "C". The key point is that PV is a condition that can be managed for a very long time. Many of us do just that.
I was diagnosed with ET over 30 years ago. It progressed to PV about 11 years ago. I have been living a good life while managing the MPN and at age 68 plan to continue to do so. I have raised two children and am now a happy grandfather. There have been a few challenges along the way, some related to the MPN and some unrelated. I call these "interesting health learning opportunities." All of the challenges have been managed successfully, allowing me to live a good life.
Please know that if your husband is diagnosed with PV, you are not alone. While PV is a very rare condition, there is an active support community here and other places. There are also hematologists who have a sub-specialization in MPNs. It is very important to consult with a MPN Specialist if diagnosed with a MPN. This is the only way to ensure optimal care. Here is a list. mpnforum.com/tsr-the-list/
WIshing you and your husband all the best moving forward.
hello, welcome to our forum. Very sorry to hear that your husband has had these health issues. It can be very daunting when you are waiting for a diagnosis, and we all completely understand how you are both feeling. We have a lot of information on our website about PV, the medications used to treat it and lots of lifestyle information which may help both of you mpnvoice.org.uk
I hope this helps. It's interesting that I read MPNs weren't called cancer until the WHO decided they should be in 2008. It's not that long ago. Before that they were blood disorders. Personally, knowing that, changed my whole perspective on my triple negative ET.
A cancer diagnose can be a shock, and it took me over a year to accept it. My GP had not found anything to worry about after my complaints. But by accident, my employer organised a cancer screening test, together with a reputed cancer research institute. I was advised to see a haematologist, and my HCT was 68% at the time. That was in 1987. I had a serie of phlebotomies and stabilised at one phlebotomy every 6 weeks. Together with an aspirine that kept me going for 25 years. I was switched to medication after. I picked up sports again and continued a fairly intens job during al that time. We advise or members to try and live on a healthy diet, avoid overweight, not to smoke etc. in order to avoid thromboses. If you decide to do sports, find a hospital that wil make you a program and guide you. You do not want injuries. It will take time to learn to live with it, but with this disease you can lead an almost normal life. I am a grandfather now, and I spend time with my grandchildren. All the best in your journey with PV!
Like several others have said, if he does have pv it doesn't mean life is over. A really important thing if he does turn out to have a mpn, is to have a mpn specialist either private or NHS. Once you're in the system you'll find the nhs good also the price of some of the drugs are horrendous and you wouldn't want to pay yourself.
I know your feelings all too well. I was 39 when I was diagnosed with a 2 year old. It was like we were planning for my funeral. Was the scariest time in our lives. I am here to tell you I am 4 years from my diagnosis and doing great! Feeling great and feel for the first time in a long time that I can do this! Treatment is so much better now. I am on Besremi and I love it! First thing I would do if he has it is a MPN specialist that is very important. They are the most knowledgeable in this rare disease. And they are going to be coming out with new treatments! Medicine is changing and evolving and new interest has been show in these old rare diseases. So I get it. Hang in there. Best visits I ever have are at MD Anderson they reassure me I can live a normal life with this. I just keep going! For the first time my illnesses aren’t haunting me every second of the day! It will be ok. And we are all here for y’all! Keep us posted. Will put you in my prayers.
I'm sorry you and your partner are going through this. It is normal to feel overwhelmed when facing health issues and a potential diagnosis. If your partner is diagnosed with PV, there are treatments that can help manage it. It's a chronic condition, as others have already commented, and you can have it for a long time. While PV is a rare disease, I hope the forums can at least help you and your partner feel less alone.
Everyone has given you great advice! You are already making the right moves by being on this forum - it is an amazing community with many others providing deep knowledge, information and empathy of shared experiences. The best and most immediate piece of advice is, if he is diagnosed, to get under the treatment of an MPN specialists - these are rare diseases and the more knowledge/experience your care team has with them the better.
I too was in my 40's with four young children when I was diagnosed with pre-fibrotic PMF and had the same thoughts of just being around for my family. As many have already said, these are chronic illnesses but with fairly good prognosis if you stay on top of them. The most important things I have done are: 1) get an MPN specialist; 2) start on an interferon; 3) try to get as healthy as possible (diet, rest, exercise - trying to lower overall inflammation); 4) take things a day at a time / try not to get overwhelmed and when I do - I know I can always turn to the MPNVoice community.
Best of luck to you and your partner (and it is great you are there for him)!
I am 48 and have pv and jak2 positive my platelets are rising so I have been referred to a Mpn specialist at my local hospital . My doctor referred me so I will let you know what they say appointment is on the 8th May x
first venesection done yesterday and he felt a reduction in chest pressure immediately which was positive. Tests now done too so waiting a few weeks for the results.
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