My dad has IPF 😔

[Kelly80]

Hi, I have just joined this group after yesterday my dad got his diagnosis of Idiopathic Pulmonary Fbrosis. I am devastated at this news. He is 72, has had vascular problems with his legs for a couple of years, but generally fit, slim and healthy. He quit smoking 4 years ago, is very energetic for his age (usually up ladders fixing roofs 🙈) anyone else have this or experience with it? I'm after some advice on how to make him more comfortable as his symptoms progress. He currently has shortness of breath and a dry cough, which is what took him to his GP in the first place. They gave him a blue inhaler and antibiotics last week, before his diagnosis, but they're not really making any changes. He is awaiting a consultant appointment and goes for some tests in a few weeks (lung function etc I think) any advice would be appreciated, thanks

[Hidden]

Hello Kelly,

I have copd but with similar symptoms to those of your Dad. Seems you are doing all the right things for him, including getting an appointment with a Consultant - I have not been offered this option so jolly good for you. I hope he gets the right medication and I wish him well.

Jennifer

[Kelly80 in reply to Hidden]

Thanks for your reply Jennifer, and sorry to hear about your condition. I watched a heartbreaking video on Youtube earlier of a guy who lost his dad within 10 months to IPF, but it took 6 months for him to see a consultant after his diagnosis, so we are very lucky. The guy in the video mentioned some drugs that are available on the NHS so I will be asking for those at his appointment. I'm really not looking forward to his symptoms progressing. We're a very close family and my children idolise my dad. Life can be so unfair 😔

[Hidden in reply to Kelly80]

I know Kelly80

However, you have to be optimistic - you could be looking too much on the dark side and the very worst scenario It is only natural to be anxious for someone you love dearly. Good luck to him and you and I hope he gets the special treatment he so deserves.

Jennifer

[Kelly80 in reply to Hidden]

There is no cure for it, so it will get the better of him eventually. But yes you're right, I will be positive and enjoy him while I can 😊 thank you Jennifer

[Watfordgirl]

Hello Kelly, I'm sorry about your Dad's news. This is one of the more difficult times - you've been given the diagnosis but not yet told what can be done to help, particularly to manage his symptoms. I've got COPD, not IPF, but there are people on this site who do have the same problem and who'll be really helpful. There's no cure but there are treatments. Maybe best to keep him off the roof for a while! Let us know how things go.

Sue

[Kelly80 in reply to Watfordgirl]

Thanks Sue. Its just a big shock at the moment. We've literally had one thing after another this year, my cousin passed away at the start of the year, and my brother has recently had his kidney removed after they found a large cancerous tumour in it. They say it comes in three's! I just want to do whats best for my dad. Want to make sure he's as comfortable as can be.

[Watfordgirl in reply to Kelly80]

You have had a bad year, Kelly! Makes you just want to keep your head down, but then you'd hit it on a wall or something.

You're already doing what's best for your Dad. You're there for him, you want to help and you love him. I know what a huge difference that makes and there's nothing better. You'll get over the shock and you'll find a way to deal with it all. x

[imelda16]

Hi kelly80. I have IPF and started the short of breath in 2011 and was told immediately the prognosis was not good but at first was just monitored the consultant referred me to a specialists lung centre I am 75 and on oxygen 24/7 now things took a bad turn last year while trying a drug Pirfenidone one of the 2 per cent that it didn't suit . I am now on Nintedanib another which may help slow the progression down.. I have not been admitted to hospital for any infection so count myself fortunate. Your dad must keep positive and sounds like he has a loving family so keep up with as much information as you can. Good luck

[Kelly80 in reply to imelda16]

Thanks for your reply. Its nice to hear from someone with the same thing, although I wouldn't wish it on anyone. I'm glad to hear there are drugs available. You being diagnosed 5 years ago has given me a little sense of relief as I panicked thinking he wouldn't have long left. Obviously everyone is different, but thats given me a bit more hope that he could have longer with us.

[ruthhealy in reply to Kelly80]

Hi, my husband has IPF. He was diagnosed 5 years ago and just with the dry cough and slight shortness of breath. Until 3 months ago he was fine, but now it's like he has fallen off a cliff! He is now on oxygen 24 / 7 and confined to bed. He is only 66. My advice is to encourage him to live life to the full while he is able, my husband felt perfenidone slowed down the progress of this awful, underfunded and little researcherd disease. Sending you lots of love, and if you want to keep in touch please do. Ruth xxx

[Kelly80 in reply to ruthhealy]

Thank you Ruth, so sorry to hear your husband isn't doing so good. I feel a lot better after reading everyones comments and knowing people can live a bit longer than I expected. The shock has been intense, I suffer anxiety anyway so this has knocked me for six, but I will make my dads last years happy ones 😊 xx

[Hidden]

Hi I am sorry to hear about your dad. IPF is nasty and I count myself lucky to only have copd. Having said it sounds like he has been caught early which is good, and there are many treatments which will help him. Also treatment is improving all the time so you never know.

I have known a number of IPF people on here who are still going strong many years after their diagnosis. x

[Kelly80 in reply to Hidden]

Thank you thats very reassuring. I'd never heard of it before yesterday so immediately Googled it and thought the worst as we do ☺️

[Mich48]

Hi Kelly, my dad was diagnosed with IPF last year too, and I know how frightened you must be feeling. I wrote a list of questions for when I went in with dad to see his consultant, who I have to say is wonderful. Dad now takes Oramorph to help suppress the cough and he also has great support from his GP, as well an amazing group of neighbours, for whom nothing is too much trouble. All I would say is don't google but make use of the BLF website, and of course this forum. I hope your dad gets the help he needs. Take care, Michelle x

[Kelly80 in reply to Mich48]

Hi Michelle, thanks for your comment. I Googled it cause I had never heard of the condition before, but will take your advice and not look too much into it now. I'm just glad there are drugs available to help relieve the symptoms. I want him as comfortable as he can be. I hope your dad continues to get the help he needs and is comfortable 😌

[bulpit]

Hello Kelly80, So sorry you darling dad has been diagnosed with IPF. Don't despair, my husband was diagnosed with IPF in 2008 he was 76. The consultant said his life expectancy was 1 to 5 years,he actually went into his 6th year. He was only very poorly in the last 3 months of his life. There are people who have survived much longer and treatment is improving all the time. This site will give you lots of tips and advice from people in the same situation. Do ring the BRITISH LUNG FOUNDATIONS,they are very good, Tell your dad how much you love him, he is very lucky to have such a caring daughter, Very best wishes, Bulpit

[Kelly80 in reply to bulpit]

Thank you Bulpit, so sorry to read about your husband, but glad he had 6 years with you after his diagnosis. I will make sure my dad enjoys his final years 😊

[Kelly80]

I have just ordered my dad an air purifying machine, do any of you or your poorly loved ones use one and has it helped ease your/their symptoms? I spoke to my mum earlier and she said he's much worse at night. Was up at 3am this morning coughing 😣