Pulmonary fibrosis

[Currygirl]

Anyone out there with same I've just been diagnosed with pulmonary fibrosis x

[Oshgosh]

welcome to the forum. There are. People on here with wide experience of lung problems.

I also have lung fibrosis, it was a shock for me when I was diagnosed 4 years ago.

Initially I felt I had to know everything about my conditions. I was always searching the net.I don’t do that anymore,

I found it useful to ask questions as I go along. People are happy to share their experience with others. Keep warm on this awful weather. X

[Currygirl in reply to Oshgosh]

Hi thanks for your response. Also I have been given ambulatory oxegyn which I'm reluctant to use x

[Oshgosh in reply to Currygirl]

I found it difficult to use the oxygen at first. I felt conspicuous and felt that people would stare at me. 2 years on I don’t care .

One problem I had. Was that the concentrator is too heavy for me. This was solved by me needing a walker due to my back pain.If I use the walker it relieves my back pain and the concentrator fits in the pocket so don’t have to carry. This means I’ll able to get out to walk. I take it to the the gym I don’t do anything ambitious but it keeps my joints going.

It’s hard at first to sort stuff out in your head and physically, there’s loads of people on her to advise and provide a listening ear.stay warm

[CarolMcl]

Hi. I was diagnosed with pulmonary fibrosis and pneumonitis after a VATS procedure October of 2021. Presently Im getting retuximab infusions 6 monthly. Like Oshtosh I too was continually on the internet at first but that is definitely not a good idea.

[Patk1]

Welcome to the forum x

[Suzie42]

I was diagnosed with IPF in April 2020, what is your exact diagnosis and what meds are you on?

[Currygirl in reply to Suzie42]

Hi it's called UIP not on any meds yet

[Suzie42 in reply to Currygirl]

I have UIP pattern in lungs

[Currygirl in reply to Suzie42]

OK how long have you had it are you on oxegyn I'm so depressed now and a it scared especially as don't really understand it

[Suzie42 in reply to Currygirl]

No I am not on oxygen, a long way off that. I was referred to the Royal Brompton hospital by my local chest consultant and have been under them for 2 1/2 years. They have put me on a spmedication called Perifidone which gets couriered to me monthly. I had a lung function test which showed my total lung capacity at 79% making me qualify for this tablet. Have you had lung function test and are you being referred on. There are a few specialist hospitals around the country so ask to be referred if appropriate. When are you seeing a medic nex?

[Currygirl in reply to Suzie42]

Got to see respiratory nurses end December just seen the community team who said I need ambulatory 02

[Daisychains01 in reply to Currygirl]

Are you doing breathing exercises? Try to get a breathing device that produces resistance. Also, be sure to take vitamin, D, zinc, melatonin, NAC, and omega 3's.

[Currygirl in reply to Daisychains01]

Hi thanks for your response yes I take all those things but what is a breathing device

[Alberta56]

Welcome to the forum.

[Clovergrass]

Hi, my husband was diagnosed with pulmonary fibrosis beginning of September. One day fine, doing our usual 5 mile walk, next day breathless, next day couldn't walk upstairs. Admitted to hospital for 6 days with chest infection where CT scan revealed serious lung damage, either from his Rheumatoid Arthritis and/or the Methotrexate used to treat it. He's not on oxygen at home nor any meds apart from steroids. 3 months later and he was starting to feel less breathless but now has a chesty cough 😩. We still walk about 2 miles every day but with lots of rests and on level ground. Have any follow up appointments been arranged?

[AngieB72]

I was diagnosed with pulmonary fibrosis 14 years ago as part of my Mixed Connective Tissue Disease.

[CDPO16]

Belated greetings and welcome. I hope you will benefit from being part of our friendly group.

[Oxygeniser]

I was diagnosed with Ideopathic Pulmonary Fibrosis during summer 2015. I try to walk 5,000 steps a day but when I get an infection I stop. The best advice I received was to avoid crowds, the cinema/theatre parties and busy buses/trams and trains, but I have a local cafe I go to every week, where I write. I avoid ‘lung’ groups, as I do not want to be defined by my illness. What infections I have had, including 2 months this summer, after going to a Jubilee party, have all come about from risk taking. I am 78 by the way, so it was not an early diagnosis. I consider myself one lucky bunny. Regards Trolleybus man🐰

[Currygirl in reply to Oxygeniser]

Thanks for your reply well it is scary thing I'm 72 and that's not old neither is 78 x

[Suzie42 in reply to Oxygeniser]

What medication are you on. Like you I try to do 5000 steps a day but do struggle to do it. I was told the more exercise the better for IPF

[Oxygeniser in reply to Suzie42]

None. If and when I pick up an infection I have antibiotics to hand. The 5,000 steps is a daily average - sometimes I do more, sometimes less. Right now, at home recovering from a stay in hospital, thanks to my gallbladder, I am doing very few, so I don’t push it. Robert 🐰

[Suzie42 in reply to Oxygeniser]

Is your lung function more than 80% if you're not on medication?

[Oxygeniser in reply to Suzie42]

Hello Suzie. Yes, but I got close to needing medication. It was thought stepping up my exercise regime made a difference and, presently, still does. I am monitored remotely by a spirometer linked to Bluetooth, which I should do once a month. Robert 🐰

[Suzie42 in reply to Oxygeniser]

Well done, keep it up