does anyone have polycythaemia ?

hi im looking for some support or help i am 30 yr old male i have had empysema now for 7 years but only got told about it in 2010 and now ive also been diagnosed with polycythaemia which is a very rare blood disorder and im now awaiting to see a specialist. im a very anxious person as it is and am finding it hard to cope with my illnesess

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  • Try not to worry. Loads of help and support here. Also if you go to MPD Voice hone page and click on "buddy" system, they will put you in touch with someone who can help guide you through. Recommend going to a forum. Are you in UK?

  • I agree with bry, have been diagnosed polycythemia or polycytheamia vera. I have other health issues such as psoriatic arthritis as well as PV, i find the best thing to do is involve my heamotologist in all medical activities surrounding me, ie operations and medication, good luck

  • how do i get a buddy?

  • I've had PRV (polycythemia rubra vera) for six years. Yes, it is very rare, but there you go, if you get it you make the best of living with it. Feel free to ask me anything.

    In addition to PRV I had a heart attack in August. They share some symptoms, so I try to deal with both as best I can (exercise, diet restraints) and do reasonably well. Luckily I'm retired and can focus on staying as healthy as I can, without obsessing about it. Heart problems run in my family so I exercised and ate well for years, but had a blocked artery and had to have a stent put in.

    In the past few years I've also had five bouts of cellulitis, of which I'd never heard until the first time it happened. Just keep on fighting, man, and remember that we are among the lucky ones who don't have something that completely shuts you down.

    ABman in Alberta, Canada

  • I've just googled polycythaemia and emphysema and it appears that the number of red cells increase as an adaptation to the oxygen starvation produced by emphysema (or livng at high altitude). This is known as secondary polycythaemia.

    I'm not a medic of any sort but, because it appears to be a way that your body adapts to the emphysema, I would try not to worry to much until you see the specialist.

    Hope this has helped,

    Jo

  • Hi I have not been diagnosed with pv and I found a lot of strength from this forum and the main mpd voice website. Please don't despair, it is not easy but you are not alone. Aime. x

  • Sorry having a "thick" moment that should have read Hi I have not long been diagnosed with pv..... Aime x

  • Hello 'stigmark', I was diagnosed with PV when I was 37, way back in 1983. I have been seen regularly by the heamatologist and well cared for. I regard myself as quite fit and ski usually twice a year, and walk as much as I can. Being diagnosed with these quite rare disorders can be upsetting, but they can be dealt with medically. As suggested by 'Jo_L' the emphysema is probably the cause of it. I belive a lot of people living in the Andes in South America have PV because of the rarified atmosphere.I am a buddy, but you need to arrange a buddy through the MPDVoice offices. Go to mpdvoice.org.uk/ and you will see all sorts of useful information, and if you decide you want a buddy, please register your interest at buddies@mpdvoice.org.uk

    I hope this helps. This site is very good for support and answering questions from people who have had similar problems. Best wishes

  • hello Stigmark, please do let me know if you would like to have a buddy, as Michael says, you can email me at buddies@mpdvoice.org.uk and I can then send you all the details. Kind regards, Maz.

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