Does anyone else compete in competitive sport who has PV?

[lizl]

I've recently been diagnosed with PV and just had my first venesection. Before this I have been competing in triathlons and duathlons and don't know whether it is safe to carry on as the training can be very intense.

I would love to hear your views.

[Ephelia]

My husband has ET and competes at international level at his sport. His consultant told him his exercise regime was good for him and encouraged him to keep it up. Don't know if ET is very different from PV but I hope your consultant tells you the same thing. Good luck.

[babbittybumble]

Hello .Our son has Myelofibrosis and regularly goes to the Gym, jogs and keeps to his normal routine.I expect how much exercise you can do depends on how you are feeling.You are obviously very fit, hopefully you can just carry on.Speak to your haematologist if you have concerns. Bye..

[Dodders]

Hi Liz, a year after diagnosis with PV I completed the Long Mynd Hike, taking 17.5 hours to walk 50 miles across the South Shropshire hills, and I did it again the following year and so I don't think that you should worry too much, especially if you are already fit. I also would suggest you take medical advice just in case although they do always err on the side of caution. All in all I think that it's best to carry on as usual and just be sensible, especially if you feel in any way less than well having exercised, i.e. 'listen to your body'. All the best.....

[billylipton]

Hi liz, I have PV (also ET my platelets also high), I have been a competitive cyclist all my life, now 64.I don't compete any more but I do ride . Exercise is good for & I have found if it is aerobic & endurance based all the better as you probably will not get the debilitating fatigue that most people talk about, I have done a couple talks at the MPN forums in London to try & get more people to exercise, so keep it up. Now the but, in theory if your blood is under control you should be ok,. When I was diagnosed I was told should be ok, so I managed to get to see a sports doctor who fully understood the extra efforts made in competition, he researched PV before I saw him. He advised to ride in training as I do but not to race, the reason being that in endurance events you always dehydrate to some extent and having PV means any dehydration can cause the blood to thicken quicker than normal, so towards the end of an event is when you are at most risk from heart attack ,stroke etc.

For me at the time I was 57 so I was happy to hang up my racing wheels but I do ride at regularly with friends at a very high level (for our age) but try to avoid going anaerobic .

You MUST make sure you are always hydrated and obviously you may be at less risk if younger but there is some risk.

I would advise seeking a sports Dr out that can give you more accurate advice, getting it wrong could be costly.

Hope this helps, its not straight forward so be carefull.

best wishes

John

[lizl]

Thank you everyone for your extremely helpful comments and I will try to listen to my body. I'm just turned 56 and I have competed at all levels, locally, national and even at world level as an age group athlete - though I hassen to add - I've never been good enough for medals.

John - thank you for your advice about hydration - I wondered why it was so important and didn't realise the blood thickened if not fully hydrated. That's very interesting because last year I was training for an Ironman but I had a frozen shoulder and was timed out on the swim, which I think was just as well as I was having light headed dizzy feelings at times but didn't know what they were.

I will look into the sport's Dr and make a judgement about whether to compete, it certainly will be short distance races from now on.

I really appreciate everyone's help.

Liz

[emmajanice]

Hi Lizi, I am male 69 and was diagnosed with PV June 2010. I have been running virtually all my life as well as long distance flat / hill / mountain walking. I have no intention of giving up and in fact training for the Lisbon half marathon end of March.

I keep well and can't say I ever feel fatigued. I'm on hydroxycarbamide and aspirin and would agree with others that keeping hydrated is important.

While I don't think my consultant is an expert on how this disease likes or doesn't like aerobic exercise, she does come down in favour of being active. So I would say keep going but within your abilities. Best wishes, Mike

[lizl in reply to emmajanice]

Good luck for the half Marathon in Lisbon. I'm impressed by how many people keep on training and it's given me the enthusiam to keep going. Hydration is the one area that I will watch. I've yet to go on any drug other than asprin, I know I would feel happier with the platelets lower but I'm not too sure that I like some of the possible side effects.

Early days...

[emmajanice in reply to lizl]

Thanks for the good wishes for Lisbon, after this morning's run I'll need them!!

Obviously I'm no expert on medication / treatment required to deal with your platelets but I believe that one of the reasons I'm on hydroxycarbamide is to help with their "stability" - if you get my drift. Best wishes and good luck. Mike

[Alired]

Hi,

Keep up the exercise and keep drinking water...

I have ET and run about three times a week, keeps you fit, the weight off and helps me to stay alert and fresh...

My attitude in all of this is to continue leading an active and healthy life and not allowing it stop us doing what we want to do.

Al

[lizl in reply to Alired]

That's a good philosophy to have and one I intend to follow.