pulmonary fibrosis

[Grinninggranny]

hi all, I joined recently looking for advice for my husband PF, and copd. He has two inhalers, Trimbow and ventolin. He can’t walk 10 steps without getting breathless. Putting his shoes on he’s breathless. So I measured for oxygen which drops to 82, sit down do nothing and it’ll come back up to 94 within about 5 minutes. 95 seems to be the norm for him. His cough is so bad that he passed out. We’ve agreed that as soon as he starts coughing he sits down where possible. The cough happens anytime day or night, there does not seem to be any particular triggers.

Any advise on how to help him gratefully revived. he still works 3 days aweek. And potters about on his days off,

[CDPO16]

Hi and welcome. I think that your husband could do with an oxygen assessment. See if he will have a chat with his GP about it.

[Grinninggranny in reply to CDPO16]

Thanks for that, I will do.

[Hazel-mary]

Hi Grinninggranny

welcome to the group I have pulmonary fibrosis bat as yet don’t have the awful cough. It sounds like you husband does need oxygen, especially as his levels get so low. I am on anti fibrotic medication that is hopefully helping to slow the progression of the fibrosis, has you husband been offered this.

He’s doing great to be keeping busy and working but definitely push the drs for more assessments to help him

Best wishes

Hazel xx

[Grinninggranny in reply to Hazel-mary]

Thank you for that, apparently he can’t have the anti fibrotic meds because he has heart disease. But I’m definitely going to work on him about talking with his doctor regarding oxygen. Thanks again

[Haggisgirl]

Hi,I have PF, as was mentioned he might need an oxygen assessment for oxygen when he's mobile , they will do a six minute walk test

[Grinninggranny in reply to Haggisgirl]

Thank you, seems to be the general opinion. We know very little about it. He was offered the 6 week respiratory classes. He went once and it just wasn’t for him. He’s very private and doesn’t do groups. I’ve managed to get him to watch videos regarding lung exercise, which he does. So that’s a plus. Thanks again for your input x

[Mellywelly]

I was put on trimbow and eventually put back on duaklir genuair as trimbow actually made me worse, but I also asked if I could try the brown inhaler as my mother used to swear by it. Changed my breathing for the better a week after starting it. Also use salamol as they have stopped the ventolin. Might be worth a try. Trimbow doesn't work for a lot of people I have found out. We feel like guinea pigs sometimes till we find something that works. Good luck 👍

[Bingo88 in reply to Mellywelly]

Good morning. I have been on Trelegy for a year and was recently given Trimbow to try. After 3 weeks I started coughing more during the daytime instead of just in a morning on Trelegy After waking up. So I stopped using Trimbow and went back on my Trelegy. Brian

[Grinninggranny in reply to Mellywelly]

That’s how I feel, but it’s good to know he’s not the only one. Thank you so much x

[Mellywelly in reply to Grinninggranny]

Your very welcome, and I hope he feels better soon 😉👍

[Alberta56]

Welcome to the forum. It's great that your husband still keeps active.

[Patk1]

Hiya+ welcome to the forum.its gd that hubby's 02 94/5+ returns to that quickly.its great that he's still able to work and does potter too, as it's gd for lungs to remain active.ensure he drinks plenty of fluids too.the best tool I've found when breathless,coughing,walking is pursed lips controlled breathing - details on ALUK.it helps u to remain calm too,which is key.if he starts coughing+ nowhere to sit,it helps to lean on a wall,over the sink,back of a chair.If he( and perhaps u) practise controlled breathing whn sat watching TV,relaxing, it makes it easier to use when needed.x

[Mavary]

Hi I believe if you see the Dr they can prescribe Oramorph for his cough. It can help to control it more.

[Grinninggranny in reply to Mavary]

Thanks for that, I had read that somewhere on this site so that has confirmed it. Thank you