Pulmonary (lung) Fibrosis

[MyGuideJools]

Has anyone had a family member with this? A loved one has been diagnosed and we know it's terminal. There's no cure, it just worsens over time.
Loved one has obviously been on Dr google and thinks his time is up. Despite the consultant telling him it could stay the same for years or suddenly worsen.
I've never heard of it so am grateful to anyone who can share anything, good or bad!
TIA

Hi Jools, yes mum still gets out. She just had to pace herself and do things slowly. She is not on oxygen yet. She is still recovering from a chest infection at the moment which hit her quite hard and she is pretty exhausted. She does get a lot of aches and pains and is constantly cold at the moment which is sll related to lack of oxygen I assume.
hope all your LO's appointments go well and they get good support from the respiratory team.

Thanks Libby good to know your mum still gets about, interesting what you say about getting cold, it's the same with him, feels the cold all the time.
He eats well so I hope that continues for the foreseeable.
It's all just a voyage into the unknown. With the cancer, you had the treatment plan then hoped that was a 'cure'
Whereas this condition has its own agenda

Hi jools, how are you and your loved one doing? My mum (who has IPF) is off on a cruise tomorrow-hope this will give you hope that holidays etc can still continue for a while!

libby that's great to know! Dad loves a cruise and is worried he will have to stop.
He's had another ct scan (with dye) & had some fluid taken from his lung (which may or may not be connected with ipf)
He's got a follow up appointment next week so I'm hoping they will tell him to go on holiday and get on with things!! He seems to have put his life on hold for now.

He gets v breathless doing the garden or walking but after a rest is OK again for a bit. Im hoping things don't get worse too quickly
Thanks for asking xx

Sounds very similar to mum-she just has to take things very slowly and rest frequently but she still does little bits of gardening. She has just finished the specialist pulmonary exercise course and thought it was fantastic. It has really given her the confidence to do a little bit of exercise despite breathlessness. It was twice a week for 2hrs and involved monitored exercise and informative talks. She was referred for this by her respiratory nurse-well worth looking into. Hope your dad is bearing up well, let me know how he gets on. Will update with any news from my mum (hopefully positive things!!)

Thanks libby

I hope dad gets the same help. I will keep in touch

My MIL died from this condition but it wasn't diagnosed until after her death! She had a cough for a long time n the breathlessness just got worse n worse. She just thought it was old age n we'd never heard of the disease !

Such a lovely woman and had a zest for life..still miss her now 3 years on

fortuna that's so sad. it's a cruel disease.

Was sad yes jools but was told if had been found sooner they maybe could have prolonged her life.

Hope that happens for your dad 😊

Hi
I have IPF. I was diagnosed just over a year ago, I have just turned 50. I am on oxygen therapy for when I am mobile don't need it all the time . I am still working but have reduced down to 30 hrs a week. I am not on any other medication. I have been triaged for transplant but basically I am too healthy.
At the moment I am pretty stable and my lung function is the same as it was when I was diagnosed last year.

In respect of weight, due to being less active I am actually gaining weight.

There is an ILD Facebook group that is very useful - lots of people with various ILDs including IPF and NSIP. Might be worth a look. There are plenty of people post and awaiting transplants and those who remain quite well.

hisnameisfreckles 50 seems very young. Good that your lung function has not changed in a year tho.
crumbs thank you I will take a look.

Dad saw the consultant yesterday who basically said there's nothing to be done. He says the drugs won't help. He's being referred to the ipf clinic so hopefully they may be more helpful.
He's also been advised to have a small op to remove fluid from lungs and have a biopsy. Is this normal?

My DH has been diagnosed with IPF

We are sort of in denial really about the future

He has started NINTENATIB (sorry not sure of spelling) tablets which hopefully will slow it down

His disease is thought to be caused by acid reflux so he is on various drugs for that too

It was discovered when he had a CT scan of his heart and the scarring was seen around the heart

He has had prostate cancer (which he had removed, but it had spread outside to surrounding tissue) and so then had radio therapy. His PSA levels are sort of stable. Then we get IPF diagnosis bombshell.

smartie sorry to hear about your DH I think we are all in denial, like dad said, at least when he had cancer it was treatable, but this is a totally different ball game. He is so brave and is trying so hard to be optimistic.
Do you mind me asking how old your DH is smartie? Dad hasn't been offered any tablets but has only seen the respiratory consultant and is still waiting for the fibrosis clinic appointment.

Thanks

He is 65, his lung function had decreased by 30% between the 2 appointments iirc, they did lots of tests on him

He was seen by specialist chest clinic and there were 2 types of tablets called PIRFENIDONE and NINTEDANIB - they let him choose which one he wanted although the 1st one has side effects which mean his acid reflux couldn't be treated, so there wasn't really a choice

It doesn't come from chemist it gets sent to our house by courier each month, that needs signing for, I guess cos they are such strong drugs

That's interesting smartie I hope my D gets offered drugs, we have seen a definite deterioration in a year. I'm wondering if as he's 75 they think he's too old
I hope the drugs help your DH, it's a horrible disease and it would appear, not very well known.

Just thought I'd update a bit.
Dad has an appointment with the fibrosis clinic in 6 weeks time. He's struggling in the hot weather and saw his GP who has said he can't do much until dad's seen the fibrosis nurse. His oxygen saturation was 90% not sure if this is bad or not??
He's so upset that he can't do so much now and he even struggles to walk round the supermarket. Im hoping he doesn't get too depressed. His appetite isn't brilliant but he tries, bless him. I think the weight loss is frightening him, it's about 2lb a week.
We just need to get to this clinic!
How is everyone else doing?

I didn't want to just read and run Jools, so I hope someone more knowledgeable will be able to advise.
and hugs

My daughter has cystic fibrosis -so similar symptoms. She gets regular sat checks. I don't think 90% is ideal, particularly coupled with his discomfort. Is there any way his appointment can be brought forward? Can the gp help with this?

tired the gp said he would contact the clinic so hopefully the appointment will be bought forward.
Hope you're daughter is currently well

She's good, thanks. She's only 3 so we are at an early stage. Her nurses are great - I'd imagine it would be a similar service so hopefully once he is in the clinic system, he'll get better access to them.

tired that must be tough with her being so young bless her. I wish you well.

It's hot again here today so dad will struggle I think, although he really pushes himself to get out and about even if it's just an hour. Which is a positive thing I think.
Strangely he feels much worse first thing, really exhausted but by the afternoon has a bit more energy.......

This is such a cruel disease!! (& I don't say that lightly having been through cancer)
He is getting worse before my eyes. Can't walk 2 minutes without stopping for a rest He was such a strong man, very active all the time but now can't do a thing!
He's having an op in a few weeks to take a biopsy. Think this is to see what sort of fibrosis it is and if medication can help. He's been told the op will leave him in pain!
Everything takes so long and in the meantime he's going downhill fast