idiopathic pulmonary fibrosis

[Flowerpower12345]

hi interested to hear from anyone who has IPF

[Ern007]

Hi Flowerpower12345

I have "pulmonary fibrosis" I know that - I don't know if the cause is know as I have COPD but I have had scarring on lungs for years, probably when my COPD was mild.

I think idiopathic means no known cause, well I don't know the cause, I will have to find out, In recent times other matters took the lamp off both COPD and scarring.

Point being I was tested for Lung Cancer and the CT Scan picked up not cancer but radiographer told Consultant more scarring, but nobody has told me why.

Did you have a question.?

[Flowerpower12345 in reply to Ern007]

Hi Ern, thank you for your reply

Mine was picked up by my doctor who then arranged me to see a specialist scans etc, had a VATS biopsy in Nov 22 which confirmed progressive pulmonary fibrosis, been taking nintedanib for 18 months but now have the lower dose due to side effects.

Have recently become more breathless and while being assessed for pulmonary rehabilitation my oxygen dropped very low so had to stop and I’m waiting to be assessed for ambulatory oxygen on Tuesday.

From what you have said yours seems to be pretty stable then?

Take care D

[Ern007 in reply to Flowerpower12345]

My breathing has changed - I now have dyspnea which can start after a few yards - My COPD breathing has changed, than in part could be due to my cancer treatment, not sure

I started with fibrosis years ago and what was thought could be lung cancer , turned out to be more scaring. I would not want or take because I take blood thinners, so wary of side effects

I get by I manage I did by the way refuse PR - I think that would be asking for trouble.

Good Luck.

[armstrong2 in reply to Ern007]

l to have just recently been told l have pf l also have emphesema and have had a a lobectony due to cancer ...lwas told on the phone just before christmas and after that nothing , no explanation , no support ..lhave since complained to my gp who now is contacting a consultant at hospital for myself to see ...so hopfully it will be explained to me how much scarring there is on the lung and what will be the next step ....l suggest to you do the same ...get intouch with your gp ...you also need answers ..pf is serious ...good luck and take care

[Flowerpower12345 in reply to armstrong2]

Hi , may I suggest you look up action for pulmonary fibrosis, you will be able to speak to someone who will put you in touch with you nearest support group.

[Ern007 in reply to armstrong2]

Sorry for late reply. When I was diagnosed with "emphesema" I was given one reliever inhaler by GP - He referred me to it Chest Clinic then, where I was evaluated and given the meds I needed.

Most " emphesema" I think is mild when first diagnosed , but should be tested to see how lungs are working ect.

See you GP as soon as possible.

[Burghy]

I have it I was diagnosed eight years ago

[Flowerpower12345 in reply to Burghy]

Hi Burghy, have you tried pulmonary rehabilitation ?, and do you take a fibrotic drug?

[AngieB72]

I have pulmonary fibrosis if that’s any help.

[Flowerpower12345 in reply to AngieB72]

Hi Angie, how long have you had it and do you take nintedanib or perfenidone?

I have recently become more breathless and am waiting to be assessed for oxygen.

Thanks for your reply. D

[AngieB72 in reply to Flowerpower12345]

I was diagnosed in 2008 but had obvious symptoms 3 years previous to that. Not on either of those medications as I am stable. I am on lots of other medications for my autoimmune disease which causes the PF, also on ambulatory oxygen.

[Flowerpower12345 in reply to AngieB72]

I wish you well.

[mike57]

HelloI was diagnosed with IPF about 18 months ago. I saw a new GP at my clinic and he didn't like the sound of my chest. I have had emphysema since 2009 but not lots of the normal symptoms. My GP referred me to local hospital Kings College and they in turn referred me to a specialised pulmonary clinic in Guys. They did the scans and lung functions tests and they have suggested that my scarring could have been caused by my reflux.

What is your story?

Mike

[Flowerpower12345]

Hi Mike, thanks for your reply.

Went to doctors with what I thought was a chest infection Dec 18, was sent for X-ray where shadow was picked up, sent for a second X-ray after antibiotics where shadow still remained, so referred to specialist (had to wait 5 months) had CT scan, which showed fibrosis.

I was then told I would need a VATS biopsy before they would prescribe me the anti fibrotic drug . Then covid came.

Finally had this procedure Nov 22 which confirmed idiopathic pulmonary fibrosis and it was progressive.

Stayed stable for a while but am now becoming more breathless which was picked up when I did the 6 minute walk exercise for pulmonary rehab.

Being assessed for oxygen on Tuesday.

Thank for your reply D.

[mike57]

So sorry fro the progression of the problem. Take care and survive!

[Hazel-mary]

hi Flowerpower

I have IPF was diagnosed in 2022 I am pirfenidone but am really struggling with the side effects I am not needing oxygen and am trying to keep myself as fit as possible.

I applied for ill health retirement from work and have been accepted for that so I will be retiring at the end of April.

How are managing your IPF

From Hazel xx

[Flowerpower12345 in reply to Hazel-mary]

Have messaged you Hazel.

[Patk1]

Welcome to the forum x

[Flowerpower12345 in reply to Patk1]

Thank you Patk1