My name is Margot and I am 70, I was diagnosed with IPF 5 years ago. When my GP told me what I had, he said and quote "you have something called Idiopathic Pulmonary Fibrosis, there is no cure so you better stop taking any medication as nothing is going to help you now, here I write it down for you, search it in the internet".

My husband nearly died when I told him. I contacted a private medical practice, saw a wonderful physician who told me my GP was wrong and referred me to the Brompton Hospital where I was treated with consideration and they have been helping me ever since.

I have done a couple of clinical trials. The last one was testing Perfinedone and Nintedanib. Couldn't cope with Perfinedon awful side effects. The trial company awarded me with Nintedanib, which hasn't been bad for me, only my liver was affected but after stopping it and restarting its not bad now, occasionally I have nausea but is not too bad.

Three days ago I got a visit from the oxygen man. I have been using it when I am very breathless and I get better very quickly, on my short walks I don't have to stop to take my breath anymore.

I go to the gym three times a week as exercise was strongly recommended. I want to live a bit longer.

So that is part of the story. Sorry for the long introduction.

Best wishes to everyone.


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15 Replies

  • Welcome Margot, what an inspiration you are for not letting your IPF win. You are doing all the right things so good wishes to you. Keep going. Xxxxxx

  • You hold on to that determination, Margaret. It's what will get you through this.

  • So good to read your post Margot and so pleased you are doing so well. My husband has PF and I get so upset reading all the bad reports on this awful illness, and you are an example of how wrong they can be. What an insensitive doctor you had what an awful thing to tell someone. My husband got diagnosed 2 years ago and is not doing too bad, he also exercises daily. Carole

  • Hello margot. What a insensitive man. Prove him wrong which it seems like you are doing i think a lot of us have met a Doctor like him sometimes i wonder why they went into medicine take care

  • Well done Margot. Excellent news

  • Margot,you have the right positive attitude and thankfully the right medical team to guide you through IPF long may you continue with both..................best wishes skis and scruffy cat x

  • Hi Margot and welcome to the board. What a cold-hearted dinasaur, your doctor is, you need to dump him.

    Well done on the fitness improvement.

    People like you are such an inspiration to us all. xx

  • Good for you girl- it only goes to show you don't have to accept everything your doctor tells you, and if your not happy query it or get a second opinion -and well done with your positive mental attitude and relatively significant progress - keep on fighting

    Take care

    Plumbob x

  • Welcome Margot!

    Your doctor was very unprofessional and insensitive in his approach . However, I am glad you had the presence of mind to seek a second opinion.

    It makes me wonder how often this happens to others who might not be able to seek a private consultation or know how to go about getting a second opinion on the NHS or other healthcare system.

    Thankfully you eventually received good advice and have been proactive in your care which is probably why you are here to tell your tale. Well done!

  • I accept nothing that GPs come out with now - I think yours may have been trained in the Harold Shipman school - what an insensitive monster. There are many on here who have been living with (and getting treatment for) IPF for years. I so admire your attitude to all this but I'd seriously consider a change of doctor.

  • margotreed

    Hi Margot, good for you to get a second opinion, I did the same, unfortunately didn't work out quite so positively. Hope you told G.P he was talking rubbish so he put you back on meds as specified by Royal Brompton. I too have been there and find they are a good hospital and am about to take a trial with them. Keep up with the exercise wish I could do it, so I do only a little but it's better than nothing eh.

    Good luck, keep well & live on.


  • Thank you all for your kind messages, they are all very much appreciated.

    About my GP, a couple of months later I made a double appointment to see him. I told him what I thought of his attitude, carelessness and disregard for people with terminal conditions. I was very angry and kept him for 25 minutes telling him how I felt. He just listen and then apologised over and over. Well I am a Latin you see, and when I lose it, it's difficult for me to stop.

    Now he is very nice and gives me anything I request.

    I would advise patients with this condition not to give up, even when I was told I had between 2 - 5 years of live, I am still here. Look around you, your families, your house, your gardens and flowers, it's all worth fighting for.

    Because there is still no answers or cure for this condition, clinical trials are so important however unpleasant they might be, even though we won't benefit from any results we might help others in the future.

    Wishing the very best to everyone.


  • Welcome to this wonderful site. You will make many friends and learn a lot too 🦉

  • Welcome to the site and fantastic how you deal with your condition keep plodding at the gym and look forward to seeing your posts Angie xx

  • Thank you Angie, I'm impressed with your energy, I can't swim anymore get too breathless.

    I look forward to read and hopefully contribute to the site. I find it interesting other people's tips and practices and stories. How is your condition? You seem to be copping very well. Margot x

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