Pulmonary Fibrosis

[scryingeyes]

My DM (75) , was diagnosed with PF, scarring of the lungs, in 2019 and she is getting worse now on a monthly basis.
She is on oxygen more or less 24hours a day at home. On level 6 when resting, level 8 while doing anything like getting dressed, going to the toilet.
She's recently had a chest infection that meant she could not stand up without becoming breathless, even with the oxygen.
She's been refused medication to slow down the illness because it's only suitable for those on level 1-2 oxygen. Same goes for lung transplant - she doesn't qualify.

So, is this it for DM?

We're talking about her coming here in the summer for a BBQ (with her being far from any flames) but realistically, she and I knows it will never happen. But planning it and looking forward to it is making her happy so we're discussing having oxygen machine brought here by her supplier so she's not depending on small tanks that don't last long.

How do I support her and my DF when we don't dare mention end of life out loud?

note from MNHQ: please read the OP's latest updates before posting.

@scryingeyes
The coeden nadolig is down, but not back in the box or up the attic!

This also looks like a lovely idea. An app to record your voice

www.bbc.co.uk/news/stories-47334604

@CoedenNadoligLanOHyd Diolch

My DM died from PF in 2014. As I'm sure you know, any exacerbation reduces lung function each time. How recovered is you DM from her recent infection?
We found with my DM that the last few months were on exacerbation after another. If she doesn't already have one, consider requesting an air flow matress at home (I suspect you DM is probably very thin? Mine certainly was in latter stages due to very little appetite).
I'm wishing you all the best OP, it's a horrible, horrible illness.

Sorry to hear about your mum.
She's still short of breath this week.

My OH also has PF. This may sound silly but he says eating a chunk of malt loaf along with his drug to slow things down helps stop the diarrhea. He told his clinic about it and they have been suggesting it to other patients with decent success so far.

We go through 3 loaves of Soren a week now but he is feeling much better for it.

So far he is on ambulatory oxygen only (6 liters) but he goes through 12-15 bottles a week. He is only allowed 6 in the house at a time so it feels like our entire lives revolve around the oxygen delivery man. They only give a window of 8am to 5pm so often we get stuck waiting in all day and having to cancel plans.

We have been thinking about switching to a condenser but I'm a little worried about it after reading above. He has sensory issues around noise and can't cope with background noise a lot. Are they really that loud?

We found them really loud. My parents had 2 - one upstairs and one down, with meters of cabling all round the place. The benefit was that you didn't have the anxiety of running out of o2 tanks... maybe some combination of the 2? He did have a smaller one for taking out & about- about the size of a carry-on suitcase. The battery drained really quickly so we'd have to ask cafes etc to sit us near a plug.

Maybe they disappear into background noise if you're there all the time, but I found them difficult. DM couldn't sleep in the room with it running, she found it stifling, maybe psychological? We had very mixed emotions when they were all finally switched off & collected.

They are noisy bit come
with long cables so you can have it in another room. My DM has one upstairs and one downstairs.
She's now having palliative care and the care package has upped significantly.

She has milkshakes to eat when she can't stomach anything and a hospital bed is arriving tomorrow.
(in preparation- she's not ready for it)
Her positivity is amazing.

My DM passed away yesterday. She struggled at the end so its a blessing.
Bastard illness.

I’m sorry for your loss @scryingeyes 💐

@scryingeyes So sorry for your loss. May your darling Mum rest in peace x Such mixed emotions when parents die after a long struggle. Be kind to yourself xx

thanks <3

Sorry to appear on your thread unannounced, @scryingeyes but it was flagged up to us by another MNer, due to the very sad update. We're so sorry for the loss of your MIL and our hearts go out to you and your family at this incredibly sad time.

We're sure this is the very last thing on your mind right now but we thought it would be wise to edit your opening post, advising folk to read your updates before posting to avoid any confusion or upsetting cross posts.

We hope that helps and take care.

So sorry for your loss. My dad has pf and it is a cruel illness.

Thank you

So sorry to hear that. Big hugs.