Pulmonary Hypertension

I have just found this community and don't know whether I belong to this one or not. I have Limited Systemic Sclerosis which has now progressed to Pulmonary Hypertension. There aren't that many in this country that suffers with it, only around 6 to 8,000 in the UK. It affects the pulmonary artery which narrows and consequently the heart has to beat harder to push the blood through to the lungs and the lungs into the heart. I am finding it difficult to find any exercises (beside walking) as my local nurses who help to organize things like this have no knowledge of pulmonary hypertension so don't know where to send me safely. Is there anyone out there who could help? The nurses don't seem to want to help until I go back to see my consultant at the Royal Hallamshire in Sheffield and have told me not to do any exercise until they have received the results of this next visit

11 Replies

  • Hi thank you for joining this site and of course you are very welcome here and you are entitled you will learn a lot from everybody about all different subject

    So a very good welcome from me

  • Hi, as jimmy said of course u can join and welcome to a fantastic support network. I don't know much about ur condition so can't really offer any advice but hopefully somebody can. Take care x Sonia x

  • I have Atrial Pulmonary Hypertension too. Along with a few heart and lung problems to help things along. My GP has said "You just have to live with it" My Consultant has said "Sorry we do not have a magic pill that can fix you at the moment" Which is a nicer way of putting it.

    You are more than welcome to join in the wit and information that this site brings. Know your limits and only push them when you think you can.

    BE Well

  • Glad to meet you. Thanks for replying.

  • Hi there and welcome, I'm new on this site and can say that its the best thing I did as there's alsorts of wonderful people on here that can relate to probably most health issues, I wish you well. Angie xxx

  • Thanks Angie. Glad to know that there is not only me. It seems to me that my GP and practice nurse have not come across it before and so feel that I am the only one in my area.

  • Hi

    If you go onto phassociation.uk.com you will find a lot of information about Pulmonary Hypertension. I have pulmonary hypertension together with Non Specific Interstitial Pneumonitis and Sjogren's Syndrome. I have been treated for the PAH by the specialist team at the Royal Brompton Hospital in London. After a whole range of tests over a few months they started me on Sildenafil which after 18 months or so has slightly improved my condition to the point where I am being allowed to go 6 months between hospital visits instead of 3-4 months previously (obviously as you know, there is no cure). I think the nature of the treatment depends upon the underlying cause of the PAH.

    I have joined The PH Association- they provide a comprehensive Welcome package and a quarterly magazine which provides a lot of information about the condition for patients and families etc

    Hope this helps- Good luck.


  • I am already a member and have found them quite good. I go to the Royal Hallamshire in Sheffield and go again in December. I too am on Sildenafil but have found no significant improvement except that I am now sleeping better.

  • No I have to say that I do not feel better, in fact breathlessness and tolerance to exercise are worse. But the echocardiograms I have at each RB visit show that there has been some slight improvement each time. Something to be grateful for! However, I think the worsening breathing may well be down to the lung fibrosis(NSIP) worsening, rather than the PAH.

    I don't go to RB again until March- an indication they are pleased with my PAH progress.

    Good luck for December.


  • I joined yesterday lots of info on there that fits in with how I am affected.

  • Hi

    I have severe pulmonary hypertension and severe COPD. I find it difficult to walk far. I do very gentle yoga exercises and now and again lift light weights. I have not been told not to exercise so I just carry on doing what I can do. However, sometimes my heart is hammering so badly that I feel that it will leap out of my chest so I do worry. Hopefully somebody on this website can give you more info.

    All the very best


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