Pulmonary Fibrosis

[Susan1979]

Hi,

My mum has been found to have crackles in her lung. The consultant is wondering if it’s pulmonary fibrosis and we are awaiting bloods and a CT scan (which can take 26 weeks). I wondered if anyone here has a diagnosis of pulmonary fibrosis and could tell me more about their experience or if anyone has had crackles that turned out to be less serious?

Thanks

Susan

[nanniespy]

I didn't realise I had a crackle till I saw my consultant, I was originally sent with a shadow on my lungs. He heard the crackles and I had a ct scan and back to see him within a month. He diagnosed Bronchiectasis and started my treatment immediately. I think it's disgusting that you have to wait so long. it's important that you get a diagnosis and the correct treatment as soon as possible. I know it's not easy but try not too worry too much till you get the correct diagnosis.

All the best

Jan

[Susan1979 in reply to nanniespy]

Hi Jan

Thanks for your reply. It’s the waiting that’s going to be the hard part for all of us. She gets her bloods taken tomorrow and I think when the results come back we might decide to try and get a private CT scan. If it is PF 6 months is too long to wait for diagnosis

Susan

[Dubba61]

Hi Susan, a friend of mine (27) has Crackling Asthma. It's pretty serious but, she still gets outnabout. Try not to worry might not be as bad as you think. 😊.

[Susan1979 in reply to Dubba61]

Thanks. That’s helpful to hear although I’ve never even heard of crackling asthma! It’s so hard not to think of the worst case scenario when the consultant drops it into conversation that PF has a life expectancy of 36 months 😢

[Dubba61 in reply to Susan1979]

Yes, i can understand that must be very, hard to hear. There seem to be a lot of positive replies. 😊 Best of luck. Dee

[sibkev]

i had ipf and cracle if it is ipf 26 weeks is ridiculous i have blood tests quite a lot at qehb they have results next day also if its ipf 2 mile a day evey day walk walk walk

[Susan1979 in reply to sibkev]

Hi

Thanks for replying to me. The consultant told us it’s a 26 week wait for the CT scan. She has bloods to get done testing for avian bird serology and rheumatoid arthritis factors but I’m guessing they won’t rule out IPF until after the CT scan? Can you tell me if IPF is a different diagnosis to PF? I’m very new to all of this! And yes, I’ll keep her active!

[sibkev in reply to Susan1979]

yes it is and scans xrays etc are fairly instant at qe i have xray at 9 am doc can see it when i see him at 930 am same with scans i dont know what takes yours 26 weeks sry i think maybe 2nd opinion

[HuwieHex]

I was diagnosed with IPF quite a few years ago. My first Hospital appointment was within 2 weeks of being referred by my GP. The diagnostic process did not initially include a CT Scan but it did include a Bronchoscopy. From first appointment to positive diagnosis took about 4 weeks.

[Susan1979 in reply to HuwieHex]

Hi, did you get the bronchoscopy after the CT scan? Just trying to work out how the diagnostic process works. So far we have

Tomorrow-blood tests

12 week wait for breathing tests

26 week wait for CT scan

Thanks

Susan

[HuwieHex in reply to Susan1979]

Hi: The Bronchoscopy was a long time before the CT Scan.

[Billybob10]

I’m 73.I ‘ve had IPF for 8 years.No crackles until two years ago.

Normal prognosis is 3-5 years so I’m doing well up to now.It changed my energetic life into a sedentary one and I need Oxygen tanks to keep at all active.No way of knowing when it will ‘see me off’ but I’m happy to battle on.

Good luck.

[Susan1979 in reply to Billybob10]

Hi,

Thank you so much for taking the time to reply to me! I hope it doesn’t see you off anytime soon! Can I ask what the process was for your diagnosis and if there was a cause identified? I had never even heard of IPF until 2 days ago so it’s a lot to take in as I’m sure you know. Also, can you enlighten me as to if there is a difference between IPF and PF? Or are the two terms used interchangeably?

Thanks so much

Susan

[Billybob10 in reply to Susan1979]

Idiopathic PF means ‘cause unknown’.I had good guitar/vocalist career when I was diagnosed.(30yrs).Had to stop due to breathing probs.Just a hobby now.Had a chest xray after an operation and doctor noticed the IPF signs in the lungs.Have had great attention from experts and know they are doing their best for me.It’s reached the stage where I’ve a pump in living room and another next to bed,breathing through a nasal cannula to keep Oxygen level on 95 as much as possible.Can still drive,taking a small tank with me.(3hrs capacity).Cheers🙂👍

[HuwieHex]

Start here:

blf.org.uk/support-for-you/...

IPF = Idiopathic Pulmonary Fbrosis. "Idiopathic" means that the cause is unknown or obscure. PF = Pulmonary Fibrosis, where the cause is known

I was diagnosed with IPF November 2008. Prognosis was 3 years. I am hoping to celebrate my 81st birthday in July, almost 10 years later!

[Megan321]

Your dr shouldn't even be presuming that it could be fibrosis. I had crackling and it ended up being Bronchiectasis. See what CT says first, and then get a pulmonary Dr., if it's bronchial related

[DIAMOND2022]

I have ipf I've also had the crackling currently on presidone and get a lot of chest infection it is frustrating waiting on appointments ,I was diagnosed 2 years ago I'm doing ok now if I feel any different symptoms I call my GP as pulmonary consultant at hospital are hard to get appointment with backlog I believe , stay positive .