I've just started going to the gym again after being referred by my hospitals physiotherapy dept. I'm hoping to start running again and maybe even do a bit of cycling. However, one or two doctors seemed to be a bit over cautious when I mentioned running as I've got minor varices. Yet one or two others seemed ok with it. What would any one advise as I haven't been able to get a consistent answer from any doctor.
Regards
Mark
Hi
I have PV and ET, diagnosed about 7 years ago and am about to run the Great North Run (half marathon) on Sunday. I started running again last year but have always tried to keep fit. I read how sufferers often have tired periods, yet I tend not to, no more than anybody in their mid 50s. I put this down to excercise, also my doctor has never discouraged me.
Obviously don't know your personal circumstances, but running gives me a great deal of pleasure.
Regards
Mark
Hello Mark, I have passed your question through to the medical team for their advice and they have said you need to discuss this with your liver team for their further advice. Maz
Hi Mark
I can only answer from my own perspective. I have varices too (gastric).
I discussed this with my consultants as I enjoy regular excercise. The response was, you might expect to see a little additional pressure from excercise but really shouldnt make any difference.
I stopped regular excercising (due to fatigue) for a while after my diagnosis, but from May this year have been at the gym most days, and also do half an hour at night on the bike.
My varices have not got any worse as a result (as shown by recent endoscopy). I dont lift really heavy weights, i do some weights on weight machines but nothing too much. Maybe if you were lifting heavy weights i could see it might be an issue.
See what your liver team say, but mine where pretty much of the opinion you need to live your life, and the positive effects of regular excercise (which includes lower blood pressure) probably outweigh the risks from doing the excericse.
I would think aslong as you keep hydrated during the excercise and maybe build it gradually you would be ok.
Paul
Hi Paul can you explain what varices are please. thanks Linda
Hi
Ok, my understanding is this.
You have veins that are in the lining of your stomach, or esophagus, when there is too much pressure from the blood flowing through them you can get parts of the vein that 'bulge' out and potentially rupture causing bleeding.
The pressure from the portal vein which connects the liver, spleen has caused mine they believe because i have a very enlarged spleen causing extra pressure. (i had my portal vein pressure measured and it was normal so they think its 'past' pressure thats caused them).
They are normally associated with liver problems, a swolen or damaged liver has the same effect on the portal vein and causes them, thats why im always asked if i have a drink problem (from those that cant be bothered to read my notes).
If you have them they tend to inject them which hardens the surface meaning less chance of rupturing and bleeding.
If they do rupture the bleeding can be small as in my case and seems to have caused iron deficency and anaemia over a period of time, or they can really go and you need urgent treatment as essentially your bleeding out.
I understand varices in the esophagus are at more risk of doing this than those in the stomach.
Paul
Thanks for that explanation Paul I would like to think that the drugs used for managing MPNs would decrease the chances of these happening. It's frightening to think of what could have happened before diagnoses or maybe there is still a degree of risk even with medication. So many people like me had to wait years before their symptoms were related to a MPN, I still haven't got over the anger of that but I was only diagnosed 6 weeks ago.
Agree, when i look back i think i was always suspicous that the diagnosis of 'muscle tone' was the correct one although i was doing a lot of excercise at the time, i think part of me 'wanted' to believe that was the case rather than anything more sinister.
I think there is always a risk of things happening, and thats why we are kept a close eye on. I hate the fact i have to have endoscopies, but i know if it was someone else i would be telling them its for their own good.
I know looking back, the fact my spleen was enlarged, i had been having 'aura' migraines since about 2005 which are common amongst us MPN folk, i do think 'what could have happened', the strange thing is, im pretty sure having PV the varices in a perverse way are probably whats stopped me having any PV related issues like stroke/heart attack because they where 'oozing blood' they were acting as my own little venesection factory.
Yes the consultant said, when I expressed my upset at not being diagnosed earlier, that at least I hadn't had anything nasty happen and that I had avoided taking HU for 3-5 years. They won't criticise anyone else in their profession! Anyway we are here to tell the tale, being well looked after and hopefully will lead a normal lifespan. I keep telling myself it could be so much worse. At 65 one would expect the body to be deteriorating and the possibility of getting some kind of illness to increase, even minor. Ours is pretty major but managable, I wish you all the best Paul.
Hi Paul, have you been diagnosed with non cirrhotic Portal Hypertension as that's what they think I have?
Hi
They havent really diagnosed me with anything when it comes to my liver. Its put down to being part and parcel of my MPN. When i had my transjugular liver biopsy they measured the pressure in the portal vein and it was normal, they did say they excpected it to be elevated but it was ok.
On a letter i saw they had written varices could have been caused by 'past' portal hypertension, so i read that i may have had it in the past but for whatever reason its gone away now.
Paul
Exercise?
Lousy Veins and Portacaths
Looking forward to my venesection 
Exercise
Breathing and standing!
