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Idiomatic Pulmonary Fibrosis

(6 Posts)
Spanisheyes Sun 27-Dec-20 11:53:41

My husband is in the later stages of IPF and I’m wondering if anyone has had any experience of this in the past. I have looked after family with cancer and dementia, but I don’t know what to do for my husband now he is bedridden. The GP and the district nurse, who phone occasionally, don’t tell me what to expect next. I’d feel better if I knew what to expect so I can prepare for it.

poshpaws Sun 27-Dec-20 12:06:04

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.

Justwidowed Sun 27-Dec-20 12:09:06

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.

Spanisheyes Mon 28-Dec-20 10:52:12

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.

NotSpaghetti Fri 01-Jan-21 13:52:49

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. flowers

NotSpaghetti Fri 01-Jan-21 13:58:27

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.