IPF and DLCO

Posted , 5 users are following.

Good Morning,

I'm looking for some advice and guidance. My grandfather has IPF and was diagnosed last year after a persistent cough and breathlessness for around 4-5 years. He is not on any of the anti fibrotic medication yet because on his lung function test he still blows just above 80%. We had his consultant appointment just last week and were basically told to discuss a DNAR. The words of the consultant were 'you have important conversations to have' rather than the fibrosis worsening it is his DLCO - which last August was 25% and has rapidly decreased by 2% each time he has seen his consultant.. By my workings out that means hes around 18% now. When I spoke to his GP separately he said he wouldn't be surprised if my grandad wouldn't be here within the next 12 months.. Of course I'm devastated to have heard those words, but at least we can plan a short holiday and give him the best we can with what we have left.

Can anyone offer advice on DLCO? I know it is gas exchange etc but I just want someone to be straight with me. I know it won't be nice to hear but I need to make this year the best for him.

Thank you all very much.

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  • Posted

    Sorry can't yet help you, I am going into hospital this afternoon, for a week, for definitive tests (blood drawn from a vein in my hand/wrist I think) as well as getting a portable oxygen machine as I regularly go down to below 80, like your grandfather on the gas exchange test I am above 80, even into the 90s occasionally.

    Hope you can make your grandfather remaining time good for all.

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  • Posted

    Hi,

    I'm sorry i can't address the DLCO, but I am very concerned that your father is not on Ofev or Esbriet, the anti-fibrosis drugs. Where do you live? Why does his lung function test affect him taking the drugs that arrest the forming of new fibrosis??

    I will research & try to find out more about DLCO.

    Good luck.

    Teri Brown

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    • Posted

      Hi Teri,

      We are in the UK, are you? Here the NICE guidelines state that you cannot have the anti fibrotics unless your FEV1 or FVC is under 80% and sadly he keeps blowing just above 80 on the lung function test!

      T

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  • Posted

    I've never heard of that either. My mother and brother also passed away with IPF. As you know it runs in the family. It's a horrible disease. Just make sure he is send a very good lung Dr, one that specializes in IPF.

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  • Posted

    Hi Higglepiggle:

    It is clear from your comments that you are very close to your Grandfather and we wish him well. I'm in Canada and here and in the US the current thinking of specialists is to put patients on the medication immediately on diagnosis of IPF. Obviously your NHS isn't about to be so generous, which is self-defeating as this medication is designed to help those with mild to medium IPF. DLCO is a measure of how effective the lungs are at converting carbon monoxide into oxygen and from your grandfather's results it would definitely appear your grandfather's lungs are declining. I don't know of a treatment to stall or slow this down outside the IPF medications but there is a ton of information of the internet on DLCO. You might also find some videos. Good luck to you and your grandfather and stay in touch if there is anything else you would like assistance on.

    Bob

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