Idiomatic Pulmonary Fibrosis

I'm so sorry that I can't be of any help, as I know nothing about this condition, but I didn't want to read and run. I hope someone comes long who can help you: otherwise make an actual demand of your GP that he or she tells you what you might expect - don't let them fob you off. Sending both you and your husband love.

My late husband had IPF and was on oxygen 16 hours a day.The most information is on the British Lung Foundation web site. If you just add ipf to the name you will get more information. It is a very nasty disease as you well know.My husband was lucky ,in one sense,that he died after three cardiac arrests. I wish you and your husband all the best for the future.

Thank you poshpaws and Justwidowed for taking time to answer my request for help, it’s comforting to know you care.
I will have to ask my GP what I might expect, maybe I’m to scared to know.
I’m sorry for your loss Justwidowed, you’ve been through hell, I hope 2001 is kind to you and you can make a comfortable life for yourself now.

Can you request a visit/call from a specialist doctor or nurse to help guide you? Maybe a link/referral to a hospice who have an outreach team would be useful.

I have no experience of this horrible disease but feel for you in your struggle.

My friend found there was a hospice/end of life care team here. She got the most amazing strength and support from them. They understood her fear and pain (as well as her husband's) and were caring and giving. You do not need to be in the last days to contact them. Here, they helped her negotiate the "system" and became, she felt, very close.

This was just before the pandemic so I don't know what changes have occurred.

Good luck. Thinking of you.

Thank you NotSpaghetti, just found your message today after logging in again. Yes there is a hospice locally, so I will get in touch with then and see if they can help me, I know they’re busy and I don’t want to bother then, although I know they’re there to help but there is always someone worse off isn’t there. I will ring them though.

Hello.... just found this post. How are you getting on? Were the Hospice nurses able to help? My dad died of this 3 years ago. My mum managed to keep him at home mainly by using the local hospice at home service. They were wonderful and came and sat with him overnight sometimes so my mum could try and sleep. They were a real boon and became friends. She is a very private lady and really didn’t want other people in her home but she accepted them because they were so considerate. The worst part was his catheter kept needing to be changed. The IPF wasn’t too awful.... he just slept more and more. On the last day he joked with the GP and then just went to sleep. Very peaceful . He was on oxygen a lot but there was no sensation of suffocating... which he had feared.
If you haven’t contacted the hospice yet, please do. Thinking of you both....