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Pulmonary (lung) Fibrosis

(63 Posts)
MyGuideJools Sun 14-May-17 17:21:43

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 googlehmm 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!

AlbusPercival Sun 14-May-17 17:25:54

My grandad had it. Diagnosed a year ago and died a month ago unfortunately.

flapjackfairy Sun 14-May-17 17:29:43

My father was diagnosed with this about a year ago.
He has deteriorated quite quickly but we suspect he had it for a couple of years before diagnosis.
It is hard to see him unable to do all that he could before . He has been prescribed some new medication which hopes to slow the deterioration and he has oxygen to use when exerting himself which has made him feel a bit brighter but he has good and bad days.
He and my mum try to make the most of his better days but he cannot walk far really now.
It is heartbreaking so i am sorry to hear that you are facing the same with a family member. X

Nanasueathome Sun 14-May-17 17:32:27

My husband had this
He managed to continue working for quite some time but finally left work about 18 months before he died
He had been ok up to then but the last 12 months were not good
He was just 60 when he passed away, almost 7 years ago now
It's not an illness that a lot of people are aware of
Usual time from diagnosis is average 5 years I believe (may be wrong there but am sure I read this at one point)
It's hard to diagnose too so he was unwell for a time until he had the final diagnosis

MyGuideJools Sun 14-May-17 17:38:04

Thanks, it's grim isn't it. The poor man has been through so much health wise so this is heartbreaking.
He is still undergoing scans etc but I'm not really sure what they are looking for now as they have already diagnosed fibrosis.
There is talk of drugs to slow things down but he's still waiting for yet another appointment.

Ruhrpott Sun 14-May-17 18:20:32

A very good friend of mine died of this about three years ago. She lived for about 4 years after diagnosis but died following complications from a lung transplant.

MyGuideJools Sun 14-May-17 18:39:25

Sorry to all those who have experienced loved ones with this disease flowers
We always tend to think of a terminal illness being cancer (which he has had and had successful treatment for a few years ago)
It just seems so final that there's not even any treatment, it's just a waiting game sad

Ruhrpott Sun 14-May-17 18:48:14

My friend was fairly young (mid 50s) and lived in Germany which is why they attempted a lung transplant. Before that she was on permanent oxygen for a year or so.

MyGuideJools Sun 14-May-17 19:14:01

That is young ruhtpott I've not heard of lung transplants being done. Such a shame

AlbusPercival Sun 14-May-17 19:20:44

It is really sad, grandad was so fit until he had a chest infection that never went away abd was diagnosed as ipf.

He was ok until about the last month when he couldn't breathe well enough to eat properly.

PassiveAggressiveLunchbox Sun 14-May-17 19:41:15

It's a horrible, cruel disease sad. Patients can live reasonably well and be stable but an exacerbation can be devastating. Practically, the British lung foundation has some good patient information including an exercise DVD which might be helpful. Pulmonary rehab and exercise are really important for people with pulmonary fibrosis, so get on to your hospital for a referral, possibly through the physio dept. There's an Irish organisation, ILFA where you will find very good patient and carer information leaflets (obviously not all info will be relevant given the different jurisdiction). Keep in touch with your respiratory nurse, they can be more easy to get hold of for questions and information. There is a lot of research being done in the area so hopefully one of the drugs available or in the pipeline may be suitable, depending on the recommendation of the respiratory consultant. In Ireland lung fibrosis patients are considered for transplant but obviously there is an extensive additional criteria to meet. I'm not sure if the position on transplant in NHS, but certainly ask if your loved one should be assessed.

Best of luck with the journey.

(I'm not a healthcare profession but have worked with patients in the past)

MyGuideJools Sun 14-May-17 20:26:38

passive that's really helpful thank you. He's had a ct scan but now they want a ct scan with dye. Would you know why this is? As they've already told him it's ipf. Each appointment is a couple of weeks wait. He's not even met the fibrosis nurse yet, just been to respiratory clinic.
He currently gets breathless after walking, gardening etc but is OK when sitting! He has a cough too. I guess things will just get worse.
He loves life, holidays etc. This will hit him hard if he has to just sit and pondersad

PassiveAggressiveLunchbox Sun 14-May-17 22:03:49

I'm honestly not sure, but it may be to check the extent of the damage? Sorry, I'm not good on the clinical side.

Sitting and pondering is very bad! Try to keep him moving as it really does help maintain his lung function and overall health. I know some people who got a pedometer and set themselves small walking challenges, if that would suit him. Find out about oxygen. It can be emotionally difficult for people (especially men IME) to come to terms with needing it, but framing it as a tool to get the best out of the day and to help keep the rest of his body healthy may help.

I hope I'm not bombarding you. The blf have local networks and may have some ipf patients or families you could talk to when he feels up to it.

MyGuideJools Sun 14-May-17 22:17:54

passive u are not bombarding me! I want to find out as much as possible. You have been really helpful.
I hope he keeps on with gardening etc, I think it will be better once he's seen the fibrosis nurse. I hope they don't say u only have x years left. I hope they are positive! 🤔

cecinestpasunepipe Sun 14-May-17 22:30:49

Sorry to hear of your loved one's diagnosis, Jools. My DH suffered from ipf, misdiagnosed as asthma for several years, and lived for about four years post diagnosis, finally dying of pneumonia. There is a wonderful, very supportive Facebook Group for sufferers and their families and carers called Pulmonary Fibrosis UK which gives lots of practical and emotional support, and was and still is a lifeline to me. There are also support groups attached to hospitals which have informative and useful meetings. Make sure your LO's consultant follows the NICE guidelines, as my DH's Consultant at a general hospital was worse than useless. It is a horrible disease, and everyone's journey is different. All the best to you and your LO.

PassiveAggressiveLunchbox Sun 14-May-17 22:33:40

Does he have an appointment date with the nurse? He might like to keep a list of the questions or thoughts he has until then so he doesn't forget them while he's in the appointment. It might also be good if a second person goes with him, and takes some notes, to help remember the information he's given.

There are some small practical things he can do for now, eg, if there is space in the shower get a shower-safe stool or chair so he can sit while washing, especially washing his hair (lifting the arms overhead can be unexpectedly tiring). Encourage him to take his time getting up and out of bed, especially if his cough is bad on rising. Allow himself the time he needs to get up, out of bed and dressed in stages if it's causing breathlessness. Also pacing the day so he conserves energy, eg if he has more energy in the morning, do the "big jobs" then and save quiet activities until later.

The nurse and possibly physiotherapist will have lots of helpful information, but it's a huge amount to take in.

MyGuideJools Sun 14-May-17 22:35:23

Thank you pipeflowers

MyGuideJools Sun 14-May-17 22:38:19

Thank you passive he does have a shower stool in the loft hmm from when he was ill previously. I'm sure he's suffering more than he let's on.
He's also lost weight, despite eating well. Is this common?

MyGuideJools Sun 14-May-17 22:47:29

No appointment date yet passive another scan and meeting with resp. Consultant first.

cecinestpasunepipe Sun 14-May-17 22:58:08

Yes, weight loss is very common, my DH lost about three and a half stones over the course of his illness. See if you can get a prescription for those milk shake supplement things, I can't remember the name. I was told to up the calories of his food by using double cream and butter in my cooking but all that happened was that I put on a load of weight. He spent a lot of time in bed in his last couple of years and was given an undulating mattress to help prevent bed sores. We also bought a wheelchair, got him a blue badge and a radar key for public loos. When his breathlessness got very bad, it was calmed by low doses of oramorph (much lower than the pain killing dose).

LIBBY70 Mon 15-May-17 07:59:21

Hi Jools, my mum has IPF. She is under the care of a consultant (but sees a different one at every appointment). She is also under the care of a dedicated respiratory nurse who is fantastic and my mum is able to call and email whenever she wants. Mum is on steroids (prednisone) to reduce inflammation in her lungs but unfortunately also lowers her immune system which leaves her more susceptible to chest infections. She has to take things very slowly but can cope until she picks up a chest infection and then is really quite poorly-had to stay in hospital for a week last time.
She has recently been to special respiratory exercise classes which have been fantastic as they are run by physios and give you advice on breathing techniques as well as exercises to do. Mum had previously been scared to do anything that left her out of breath.
She was referred by her respiratory nurse for these classes but had to wait around 9 months for a slot.
She has also lost quite a bit of weight. She was diagnosed approx 18months ago but probably had it for longer as she was previously mis diagnosed. She has never smoked a cigarette in her life and is frequently asked by docs at appointments if she has managed to give up smoking grrrrrrr. Will keep checking back here and will update on anything new that helps my mum.
There is also an IPF support group in her local area (Oxford) which meets every other month. X

MyGuideJools Mon 15-May-17 16:10:34

Thanks Libby it's good to hear from someone who is actually going through it right now. Although not good that your mum has ipf of course!flowers
Is she still able to get out and about?
The exercise class sounds good. Everything has a wait attached to it tho!
Holidays have been cancelled /put on hold until all the tests/scans are done.

MyGuideJools Mon 15-May-17 16:12:21

I wonder why people with ipf lose weight?

PassiveAggressiveLunchbox Mon 15-May-17 18:23:01

The weight loss can be a combination of the body having to work harder due to the lower levels of available oxygen and loss of appetite due to being unwell/medication side effects. If you can access a dietitian as part of the multi disciplinary team, they should be able to advise on good nutrition options.

I just came across this site today - - which again is Irish, but might have some helpful information.

PassiveAggressiveLunchbox Mon 15-May-17 18:27:17

Sorry, I should have said, that site is funded by a pharma company with a medication for ipf (I'm not in any way connected to them) but has had input from a patient support group and medics.

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