chris-soper
Forum Replies Created
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Personally am not a sufferer but my late husband was and am sure end of life has been raised before so type away. Knowledge (aka personal experience) is power and all that.
Hugs for what you are going through.
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chris-soper
MemberMarch 15, 2022 at 11:52 am in reply to: Wrestling with the End Stage of Pulmonary FibrosisWhilst his Inquest is still to take place I can maybe ‘help’ by describing my late husband’s passing. He died at home in my arms, gasping for breath and begging me to turn the oxygen up. The machines were already at maximum (2x9L), he’d gone through a whole series of face masks with various limiters and faced with his ever-increasing need for higher oxygen levels I’d asked the oxygen nurse what options we had when he reached the max but needed more. “Nothing” was sadly the answer other than try to relax as being stressed/anxious increases the need for oxygen. Very difficult – nigh impossible really – to relax when you can’t breathe….
The oxygen nurse did tell me that tiny doses of oral morphine hourly would aid relaxation and we did have some guidance on relaxation techniques.
Best advice is to try to stay active as long as you can and avoid being bedridden.
There was no warning that my late husband would die when he did. (He’d been bedridden for seven weeks after falling and breaking his hip, which the hospital had refused to pin…. He’d had a heart attack six months previously and stents six weeks before his fall. He was on 4L ambulatory oxygen on as/when needed basis when he fell but after four weeks in hospital he came home – all they were doing was giving him pain relief – and by then he was on oxygen 24/7, 12L prescription.)
Mentally he was good and physically he was still strong. A week before he died he even manoeuvred himself across from one bed to another – broken hip and all, no support, nada and an hour before he died he pulled himself up the bed on his own to aid his breathing. One minute he was ‘fine’, the next he was panicking/begging for more oxygen and just couldn’t breathe….
Best way I can describe it is when you’re choking and can’t catch your breath. It happened to me a few months after he died. Cake crumb? Stress? Not sure but definitely not pleasant.
Hope that helps in some small way.
Good luck to everyone associated with IPF. We knew diddly squat about it and here in the UK it takes far too long to diagnose albeit granted the Covid pandemic didn’t help!
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Agree with Steve, at those levels you’ll probably find a small face mask is better for you.
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chris-soper
MemberMay 27, 2021 at 3:53 pm in reply to: Relationship Between Excess Iron & Fibrotic Lung Disease(s)Interesting…. 12+ years ago my late husband was encouraged to take LIV-52 supplement by a pharmacist in Cyprus to protect his liver (he liked a drink). He started to suffer breathlessness but we didn’t connect the two. In 2016 he was diagnosed as ‘possible IPF’ but never definitively confirmed. His feratin level at one point was 800+ Unexpectedly he had a near fatal heart attack last year and heart stents. Does seem likely – in his case certainly – that there is a connection between excessive iron levels, IPF and heart disease.
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chris-soper
MemberFebruary 25, 2021 at 11:15 am in reply to: What should I expect as IPF progresses?Hugs @vishal. I lost my husband recently – he was on 4 litres O2 on ‘as necessary’ basis but was hospitalised after a fall when he broke his hip and multiple ribs. Very quickly his oxygen requirements increased and when he was discharged four weeks later (still with broken hip and ribs) his prescription was for 12 litres O2 24/7. Thanks to NHS we had two 9 litre machines so effectively could go up to 18 litres, which we did in his final days, but we were told that anything more than 15 litres made no difference. If 15L was insufficient the ‘best’ help was to try relaxation techniques (not easy when you’re in pain and struggling to breathe). My husband was put on opiates but he suffered hallucinations, which stressed him even more so he was switched to low doses of morphine, which we were told should help as a relaxant. His pain obviously exacerbated his oxygen requirements but he only survived 7 weeks after his fall. I do hope that information helps in some way. Good luck to you and your family.
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chris-soper
MemberJanuary 5, 2021 at 12:00 pm in reply to: Oxygen Increase after a fall and being bedriddenThanks for replying Mark. There is to be a Coroner’s Inquest so maybe that will shed some light.
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chris-soper
MemberMarch 22, 2022 at 11:29 am in reply to: Wrestling with the End Stage of Pulmonary FibrosisThank you Christie.