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My dads GP has diagnosed him with PF yesterday, following some ongoing symptoms and tests.
Specifically lack of energy, persistent cough and heavy feeling in chest. My sister and I have also noticed he seems to have lost weight, but he's always been quite slim.
The doctor mentioned to him that 'its not cancer', as a sort of silver lining I guess, but after doing some reading up about it, it seems about as grim.
Dad is 71, was a smoker until 60 and has worked as a tool maker so been around metal and dust most of his life I suspect. Otherwise he's been pretty fit and robust.
It's a real shock to him, and me, and I'm wondering what advice anyone has, or experience. He's awaiting a specialist appointment with the hospital for a better diagnosis and some further help, but it's a month wait ☹️
The worrying thing for me is PF can be related to asbestosis. I work within the asbestos industry and the health implications weigh heavily on me already. If his PF diagnosis is related to asbestos then I can see me having a hard time dealing with my career choice.
FIL had it for a number of years, potentially asbestos related, but mainly as he was a heavy smoker. Regularly out of breath and after flare ups he'd be on Oxygen. This went on for a fair few years, but he was primary carer for MIL. Unfortunately it progressed and no-one spotted the Stage 4 lung cancer until late !
Just be aware his condition will potentially hide cancer so make sure he get's regular check ups.
My Dad had this and id love to be able to give you some positives however unfortunately it isnt a pleasant thing to sit by and watch.
My dad used to smoke for a good few years and only gave up when he hit 50ish, he also worked on building sites and did a lot of DIY without masks for the most part, so lots of dust inhaled over the years.
My old man put it down to a side effect from some tablets he was taking but i think that was more him trying to assign blame onto something rather than just being the unlucky one.
In the early years it wasnt too bad, a bit of breathlessness and resting if we went for a walk, the odd coughing fit but nothing too major. I will say he also went to the gym routinely which seemed to help.
He was 53 when he was diagnosed and he lasted 13 years after the doctors told us the average expectancy was 8 years, this was nearly 20 years ago now and i know theres more than likely better treatment available now than there was back then.
The last 2 or 3 years were really tough, he went from a very capable individual to someone who couldn't make a cup of tea without struggling for breath to the point he needed oxygen to just hold a conversation.
Eventually my sister and her family moved in with him and essentially became his carer until one night he was so ill he got taken to hospital and then moved to a hospice and that was the last week we had with him.
Sorry i cant provide a better outcome or a bit of hope that you were most likely asking for, it also doesnt help as today would have been his 70th Birthday so im in a bit of a doom and gloom mood, however i just wanted to paint a realistic picture.
I will also add we had some good times in those 13 years from diagnosis, we knew he wouldnt last until his 70's or even 80's so we made sure to enjoy the good times and endure the bad as best as we could.
Feel free to PM me if you want to know anything specific.
Mrs_oab has pulmonary fibrosis, a side effect of 16 years of chest infections, courtesy of her primary immunodeficiency.
It's been diagnosed last summer, and since then she's had significant time off work and is slowing down when it comes to cycling and hillwalking.
It's a worry at to how it will progress - there's lots of doom and short(ish) timescales written about it, yet her consultant and GP seem to think there's no worry until they see it progress. I've also got an elderly uncle with it it Oz, courtesy of a life as a miner, and he's managed about 6 years before lung cancer has emerged from it and he won't see this year out.
There's no real treatment. They've discussed flushing her lungs of the scarring tissue, but a) that sounds horrific and b) the consultant says the downsides can outweigh the benefits.
Sorry I can't be more positive about it, but it seems a bit of a 'it is what it is'.
I watched my dad die of Pulmonary Fibrosis (Miner's lung) when he was 59 yrs old, 36 yrs ago. I'm just shy of 53 and was diagnosed with early stage pulmonary fibrosis last year. Having recently come through fairly advanced bowel cancer, let me tell you, it felt like a pretty solid kick in the balls to be told in the same conversation that I was cancer free, but the scans had detected PF! However, as I understand it, Pulmonary Fibrosis is a catch-all term for a whole host of conditions that lead to lung scarring. I'm not a smoker, I work in a very clean environment (molecular biology lab), and I'm fairly active. I am aware that even just going for a walk now can lead to me puffing and blowing like a whale, but my consultant doesn't seem overly worried and like others have said, it's whether it's progressing or not and at what speed it's progressing that's the important bit.
I'm just waiting on my 2nd assessment in the next few weeks to get a better idea of where I am with it. I don't see it as any different from the cancer diagnosis though. You've got to deal with it as best you can whilst grabbing life by the goolies and squeezing it till it squeals for mercy.
Always happy to have a blether if you want to email or PM me.
Craig xx
Thank you for the replies, they are really helpful and insightful. Also thank you for the offers of support i appreciate that.
I went to go and see him and my mum earlier and it's all a bit emotional right now. But I guess we need to keep some calm until we have more information from a specialist.
I'll keep this thread updated when I know more. Just for somewhere to talk it out more than anything I suppose.
@dcwhite1984, I hope you are ok, today must be a tough day for you.