Idiopatic pulmonary fibrosis

[Oliver1954]

Hi my journey started about a year ago when I raised how I felt the doctor just kept saying that you look great I had a routine X-ray for shoulder pain and the radiologist picked up that my lungs were not clear.

Then had the full chest x-ray and again the radiologist said to me it looks like ipf so last week I had a CAT scan I am having the breathing test on 16th and back with the consultant on 4th of September.

I am sad that my GP did not listen to how I felt just went off appearance.

That said I now have to get on with the rest of my life and no looking back.

Have got loads of information from reading other people's post so thanks a million to you all.

[sassy59]

This is a great forum to be part of Oliver and l'm pleased the good people on it have helped you come to terms with your diagnosis. Take care xxxxx

[Oliver1954 in reply to sassy59]

Thanks a million for your reply, it might sound strange but I feel relieved that I finally know what is going on and having read so much on here since the start of july I feel I am much more informed about what to ask about & for now.

[mrsmummy]

I am very pleased you were helped here.

[Katinka46]

Thank you for your story. You sound very positive, well done. It is hard to face a diagnosis. Keep us informed of how things go for you.

All the best.

[Oliver1954 in reply to Katinka46]

Thanks a million for your response. My mum is 94 I had plans to be 106 just to see how world pans out #brexit, Irish unity, now I have to revise that thinking a little as I have cats & dogs that need tlc🐶🐱 so will have to try hard to stay fit 4 as long as possible.

I hope its ok to follow you?

[Katinka46 in reply to Oliver1954]

Of course. If you look back at my posts you will see some of my silly cartoons.

Kate

[sibkev]

you only get a small crackle with ipf nothing to hear at all so maybe that is why whill you are at eary stage keep walking and staying fit do not sit back it will overwelm you walking keeps it at bay for a lot longer 2 mile a day my chest spc told me

[Oliver1954 in reply to sibkev]

Had an accident in 2015 more or less out of action for 18 months but in that time I had issues gp said you look great so the months go on in March started walking dogs out then I knew something wrong could nearly put 1 foot in front of another.shoulder and collar pain ++ got an xray at my local hospital and they picked up on lungs

Both go and consultant say can hardly hear cracking expected worse? and I do not yet have clubbed fingers. (Your comment on cracking interesting)

My cough has gone from every other day ++ back pain and all issues seam to settle more pm when I am doing less.

I am keen to get on the rehab exercise program as I have always had a bad breathing technique which I assume was from a child as I was always chesty and went to an open-air school in the north of England for a time.

Thanks a million for your response I am trying to learn as much as possible that I can before I see the consultant at the start of September

[winfar]

They say ipf is really hard to diagnose so my consultant has been unsure for many years. As i had been treated with steroids just before my lung function tests my breathing had improved so much i was then told that they now dont think it is ipf but old scarring. Leaves me very confused as had never had any treatment for those years and makes me wonder if my gp had not given me steroids would my diagnosis then have been ipf.

[Oliver1954]

Thank you for your reply. When did you first start to notice systems?

And did the steroids work for you?

I had a xray in 2014 and report said mild cardiomegaly cardiothoracic ratio 0.52

Lung & pleural recesses clear biapical pleural thickening so from sounds I had not issue in 2014

[winfar in reply to Oliver1954]

I first noticed systems just before i had stents fitted for narrowed artery and 80% blockage so thought breathlessness due to that but i was diagnosed just by chance as I had been sent for a scan by a rheumatologist i had been referred and thus was referred to an ild clinic and that consultant said she was almost sure it was ipf. I didnt have any treatment until recently when i was really ill and breathless and that was why my gp prescribed steroids. I found them really hard to take with the side effects and only lasted on them about 8 days but i knew my breathing showed a remarkable improvement which i am hoping will continue. My problem now is constant coughing and occasional breathlessness if i over exert.

[Oliver1954]

Thank you for sharing your experience with me.

Like you its when I over exert like picking up a bucket walk up the hill, before i could run up with dogs.

The extreme hot weather we had here in Ireland seemed to make me 10 times worst.

What amount of steriods did you take each day that gave you some breathing benefit?

& I do not understand why they are not giving the new drugs to people instead they seam to wait till we get worst which makes no sence.

I do hope you are feeling better soon.

[Catwoman50]

I also felt relieved when finally diagnosed with ipf last year. Yes, it's on exertion it shows, you keep thinking 'what's wrong with me' I'm ok doing nothing and gp just keeps saying it's a bit of asthma, and I kept saying but I can't DO anything?

I agree about the meds. They are so expensive you can only get them when you have deteriorated to a certain point. Maybe that will change in the future.

[Oliver1954]

Thanks for your reply.

In the last year did they put you in any medication for ipf?

Do you know if the new drugs are only prescribed when lungs are at 88% or is it the 02 sats down from 97 to 88.

The GPS are so maddening when you get a good one you need to hold on tight, think mine is afraid of consultants.

[Hidden]

G'day Oliver..There are so many cases of mis-diagnosis where IPF is concerned...has anyone told you "You have IPF" or are they guessing??

The spirometry (Lung function) test should give a true indication of just where your lungs are at......Please ensure that you get a copy of the test....and ask the Dr what each one represents...too many have posted on here over the years,not knowing what it all means, and some Dr's become deaf when asked to explain...but you need to know.....Do you have a finger oxymeter??...I wish you well on your journey.

[Oliver1954]

And a very g/day to you.

Radiologist said ipf respiratory consultant said pf looking for cause.

Looks like most people never know what the cause is?

I take the breathing test on wed 16th so all will be told then as most of my symptoms are showing when exercising doing yard chores

Yes purchased an oxygen finger pulse works well when hands warm as I get white fingers as hands chill

I am recording findings along with bp

I saw a post with all the results from some one

So I have listed them down so I can just fill in my numbers.

Thank you for your reply I hope you are keeping well?