Just had a visit again with my consultant who I see more than our minister,as I have Pulmanary Fibrosis aka IPF at the the end of our visit he started talking about my weak heart,which for the last two years he denied that I had any heart problems even though I was admitted to hospital eighteen months before with suspected heart problems,he was more concerned with my heart than my exrays of my lungs which were progressive worse than the last one's,now I'm more worried and waiting for an appointment with the heart people as to what the future Is .does OLD and heart disease go hand in hand .can anyone enlighten me here ?

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  • I was very ill for 12years with COPD, then diagnosed with heart problem. Pacemaker fitted and my life is now a lot more comfortable.


    Your daily tonic

  • This pacemaker is it easily fitted and when you say comfortable does mean you can walk any sort of distance as I am limited as to how far I can walk

  • My husband has PF and now has heart failure; my understanding , in his case, is that the stiffening of the lungs makes it difficult for the side of the heart which sends blood to the lungs to pump efficiently. It's not the usual side of the heart to fail - normally it's the side which pumps round the body, and there are various drugs which can help that. The heart failure my husband has can result in fluid collecting more in his lungs than ,say, swelling in his feet, and contributed to chest infections etc.. The treatment is diuretics - if this is what your consultant is talking about, then the cardiac consultant can advise on treatment. When Keith was last in hospital with a major PF exacerbation resulting in 24/7 oxygen, the respiratory consultant told us the key to keeping him well was diuretics - but they don't always explain why ! Heart failure is not necessarily as drastic as it sounds - it just means your heart is struggling a bit to pump as strongly as it needs to, and needs a little help. We have some excellent heart failure nurses in our area, who are really helpful. Good luck - keep us posted on your progress!

  • Thank you Gidge. This helps me a lot as I have been in for two cardiac incidents. Still waiting to see a consultant - Hey, Ho.

  • Cuddly ,Can't believe you have not seen a consultant you need to ask your own Doc to do his job sort this out,I feel my doctor needs a wee bit pressure to get his ------ out,so don't take no for an answer

  • Great explanation Gidge! xxx

  • Hi pechinawa

    I have pulmonary fibrosis (not idiopathic but caused by an autoimmune disease). Whilst the Brompton were investigating the PF about a year ago, they discovered that I also had pulmonary hypertension (as described by Gidge). The artery on the right side between heart and lung has narrowed (possibly scarred-but certainly due to the same immune system condition). It causes pressure in the artery and makes me even more breathless and I have started to retain water.I was passed over to their specialist pulmonary hypertension team for tests and treatment. PH is a rare disease, as is PF and Royal Brompton is one of the only 9 specialist centres in the country for the treatment of PH. They are as thorough and, if possible, even more supportive than the PF team. Anyway I am now being treated with a drug called sildenafil which helps to relax the artery and improve blood flow. Also have diuretics. Although I am still struggling with breathing , particularly when moving about - the echocardiograms I have had every 3 months show that the PH situation has improved from when I first started taking the sildenafil.

    Perhaps you may have something similar. None of the medics involved seemed at all surprised that I had developed PH - it seemed as if it was quite expected that it might happen.

    As with PF, there is no cure but there are now a few treatments that can be tried to improve or holt the condition to some extent.

    I do hope you have some positive news when you go for tests.


  • what medication are you on ? and dont be fobbed off with your age ,when did you first start to have problems ?was it before you started medication or was it after taking medication ?have you recently changed medicine ?

    Sometimes it is worth sitting down and looking at these things

    what are your meals ? how often do you eat ?

  • Hi Simi sorry I've taken so long to answer you're email,the only medication I am on is steroids,I also suffer from Hypersensitivity Pneuomitis which like PF there is no cure

  • No, old and heart problems, don't always go hand in hand together, ! Have had heart problems since being a child, and diagnosed with Ipf last nov, my heart is stable, although I wish I could say the same for my lungs! Don't fret about your heart, stress and worry wont help, it maybe a small problem, that can be treated with the right drugs, take care.

  • Young Widow,your words make me feel I should stop moaning about my lot and sort myself out and get my priorities right ,A Big Thank you, I sincerely hope all goes well for u in the future " live Long and Prosper "

  • We're all entitled to a moan, at least on this forum,we all understand this, so.feel free to have a moan, laugh, or read a blog which lifts your spirits! That's what we're all here for, take care, Alice

  • Dear pechinawa,

    I am reconciled to seeing him on Tuesday week. Well, eight years ago an Xray and report was lost. It never arrived at the practice. It followed a locum long gone. That gave a PF diagnosis. When the GP fnally found it following hs Xray referral both of us were spitting nails - eight years when I could have been having teatment!

    Still, see what next Tuesday brings, maybe a cause, maybe good management advice.

    The GP doesn't need pushing now. He already shortened the queue by two months. There must be a lot of breathing problems in Leicester.

    Catch you again soon,


  • Hi Cuddy,best of luck on Tuesday hope all goes well

  • Cuddy, I missed your post somehow, I'm hoping everything goes well for you. Peeg

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