idiopathic pulmonary fibrosis masquer... - British Lung Foun...

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idiopathic pulmonary fibrosis masquerading as bronchectasis...?

swimmer
swimmer

Hi, I was diagnosed with bronchectasis in 2012 after lung scans and a bronchoscopy. However, my symptoms do not seem to be the same as others that I have talked with and the ususal treatments for bronchectasis do not help me. I have had Hepatitis C in the past (which may be associated with developing IPF) and I wondered if anyone could shed any light on the situation. Any and all suggestions gratefully received as always.

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Hidden
Hidden

You cant say that usually its doctors drop that PF bomb shell when totally cooked.

Between me and you this something going on with Hepatitis WHY was usa gov telling genetic companies not to disclose on DNA Geno results.

Wish i had answers .. I could not understand why elderly bronchectasis suffers had aids like symptoms.

guess its immunity inflammation

swimmer
swimmer in reply to Hidden

Am seeing consultant in a couple of weeks and if I find out, I'll let you all know

Thanks for your input

Best wishes

What symptoms have you swimmer ?

swimmer
swimmer in reply to Billiejean_2

Fatigue, breathlessness after mild exercise and/or going up a flight of stairs at a 'normal' pace. Constant cough with great difficulty producing very sticky sputum most of the time. Lots of chronic aches and pains especially around hips and lower back which are getting worse. Very low mood

Billiejean_2
Billiejean_2 in reply to swimmer

Unfortunately Swimmer, those symptoms could be attributed to every respiratory illness we know of. But the constant sputum does sound like Bronchiectasis. But the only one who could change your diagnosis would have to be a respiratory consultant. I have Bronchiectasis and I also have quite a bit of sob during infections, especially going up and down stairs or slopes of any kind.

I hope you get some answers but you'll probably have to be quite insistent on getting your symptoms and condition being examined for a condition other then the one you've been diagnosed with.

swimmer
swimmer in reply to Billiejean_2

Thanks Billiejean. Yeah, I know the symptoms are non-specific, but I just feel like I am getting worse/weaker - again, probably not an uncommon situation in respiratory illness. I am seeing consultant on 30th Sept so will ask her for further investigation....

Billiejean_2
Billiejean_2 in reply to swimmer

If you have developed some pulmonary fibrosis, it should be obvious in X-ray. Fibrotic lungs are smaller then other lungs and the fibrotic areas show up as white on x-ray. So maybe an x-ray could shed some light on the situation.

swimmer
swimmer in reply to Billiejean_2

Thanks again Billiejean. Will ask respiratory consultant for an x-ray although I think they are reluctant to do chest xrays due to high exposure to radiation. I have x-rays for an osteoporotic spine every year or so, too.~Will let you know what she says on the 30th.

Best regards

Hi Swimmer. I have IPF and had terrible cough and mucus. Just got diagnosed with acid reflux and put on lansoprazole. Cough and mucus completely stopped. Full better than at any time this year. A long shot I know but we'll worth checking. If is acid reflux lansoprazole will make a difference in a week

Best wishes

Thanks Epictetus (great name by the way)

I was tested for acid reflux a couple of years ago but there was no sign of it. Am seeing consultant in two weeks so will mention it again then.

I've read your post with interest. I have all the same symptoms (except low mood) but have not been diagnosed with bronchiectasis but with Small Airways Disease/Bronchiolitis. Is it evident from Lung Function Tests?

swimmer
swimmer in reply to Fennella02

Hi Clareb

I am not sure how they test for it - that's a very good question and one which I will ask consultant when I see her on 30th. I have never heard of bronchiolitis either... will look that up on-line.

Thanks and best wishes

hi swimmer, I have read your post with interest I have suffered for the past 4 years with all of your symptoms and no meds seem to elleviate it but the past couple of years the mucus is relentless coming up for hours each day, do you produce a lot of mucus too every morning I feel it might be my last !! so disabilitating I dare not go far its so embarrassing. X Carol

Billiejean_2
Billiejean_2 in reply to carolg1

Carol, I remember you posting about this huge excessive amount of sputum before. So sorry to hear it's still there. Have you had any periods of relief from it and what do your doctors say about it ?

carolg1
carolg1 in reply to Billiejean_2

Hi Billyjean no I have no respite from it, they don't seem to do anything about it except try meds for allergic reactions nasal sprays etc also meds to deal with reflux but none I have tried bring any relief I'm back with consultant next week , and I am going to tell him again it is so getting me down , thanks for remembering me xx

Billiejean_2
Billiejean_2 in reply to carolg1

That must be very upsetting for you Carol. Getting on top of the reflux should help, as it's very tied up with inflammation and irritation in the lungs. I now have no sputum, which in it's way is almost as annoying as having too much. I still get exacerbations, sob, congestion, pain etc. but without sputum to test, it's hard to know how to treat it. Good luck with your consultant visit.

carolg1
carolg1 in reply to Billiejean_2

Hi billiejean thanks for your replies, I will let you know how I get on xx

swimmer
swimmer in reply to carolg1

Hi Carol, so sorry for your distress - what treatment are you using? I cough loads but produce very little, as the 'dreaded green stuff' (highly technical term that, haha) is very sticky and lurks deep in the bottom of the lungs. Yeah it is embarassing and exhausting and depressing. Do you have a respiratory nurse of physio to help you with your symptoms?

Best wishes

swimmer
swimmer in reply to carolg1

Sorry - that last sentence (of my previous post) should read: 'repiratory nurse OR physio to help you with your symptoms.'

carolg1
carolg1 in reply to swimmer

Hi swimmer , I have loads of the damn stuff literally pints a day just clear frothy n thick it's awful thanks for reply really appreciate it xx

swimmer
swimmer in reply to carolg1

Do you eat much dairy? I know that dairy products can be very mucous forming - not sure if reducing or substituting dairy for other calcium rich foods such as green leafy vegetables/salads might help? I have had advice to that effect. Best wishes xx

carolg1
carolg1 in reply to swimmer

I've tried no dairy but no change there, it feels to me like I have a particular blockage and all the mucus from PND etc can't get past that point so I then start wretching and it pours out in huge amounts or maybe my imagination run rife

swimmer
swimmer in reply to carolg1

Hi Carol

I guess you have tried all other avenues then - eg. allergies to bedding, pet dander, environmental pollutants, etc.? It sounds pretty ghastly. Are there any places and times when it improves and, if so, can you see a pattern or influence that makes the symptoms better or worse? Best wishes x

Hi swimmer can't say I've had many days at all where the symptoms are less, if I have a day whereas it's not as bad my midriff /ribs get really painful with like pressure then the following day the mucus is even worse xx

I am so sorry to hear of your ghastly symptoms. They must really get you down. There has to be a solution to at least ease them so that they are tolerabe, if not completely resolved. It definitely sounds like it's GERD, but I know little about this disorder. All I can do is wish you well and suggest that you ask your consultant if he/she will refer you, for a second opinion, to another specialist - perhaps someone that your present consultant trained with - a professor for example.

Bet wishes

Sorry Carol

That should read 'best wishes!!'

carolg1
carolg1 in reply to swimmer

Hi swimmer, I followed your advice and they have agreed to send me to see a professor Maurice who specialises in reflux/ respitory only down side is there could be a wait ' he doesn't see private either, thanks for the reply really appreciate it xx

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