How did you get here? What caused you... - British Lung Foun...

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How did you get here? What caused your COPD, ACOS, Bronchiectasis or whatever?

ck101 profile image

I saw this thread running on another forum and thought it was interesting.

For me I had mild asthma as a child, I also had bronchiolitis, scarlet fever and the odd asthma attack up to the age of about 6. I have a strong familial connection to respiratory illness with no Alpha One. I foolishly smoked socially & relatively lightly from 17 to 34. A child of the late 60’s I grew up in an age of smog and open fireplaces but I’m convinced it was the smoking. I’m 52 now have mild Chronic Bronchitis and irreversible small airways disease. Dealing with this since 04 and crucially my FEV1 / FVC ratio has recently dropped below 70. Grrrrr!

What caused your lung disease?

63 Replies

I’m Pete’s carer and don’t have lung disease. Pete was diagnosed with sarcoidosis after a chest x-Ray and biopsy in 1991 and then COPD (chronic bronchitis) in 2010 after a chest infection. I found BLF in 2012 because I was scared and isolated. I’ve been here ever since and happily care for Pete. Interesting post ck. xxx

Double pneumonia and whooping cough at the age of 5 months old at the start of the NHS and as a double whammy measles aged 19. So I don’t know what it’s like not to live without bronchiectasis.Cx

Like cofdrop, I have always lived with bronch. No measles, no whooping cough no asthma. Just started having pneumonias at eighteen months old. The diptheria vaccination which was new at that time could have been the culprit as the cohort who were given the jab before they changed the chemical that they floated it in seemed to have lifelong bronch as a result of numerous pneumonias following vaccination. Many died of course and difficult to prove. My consultant is not averse to this theory but no government is ever going to admit it.

I never ailed anything until about 18 months ago. I developed pneumonia last year and during my hospital stay, blood tests were done. These showed up vasculitis which is an auto immune disease Seemingly it was this that attacked my lungs and later on, my kidneys.I am now on various medications after never taking anything before in my life. I get very depressed at times and have had to adapt to a completely different life. However, as one of my daughters often says,"you are still here Mum"!😀

Hello, Like you I was born into a family of cigarette and pipe smokers. It was also the time of coal fires and an ignorance of the damage polluted air could cause. As a child I suffered from the usual childhood diseases, chicken pox, german measles and measles. I also remember being taken on holiday at 5 years old, to Tenby to recover from a very bad case of whooping cough. Apart from all of this I was in my 50s when I developed a constant cough that didn't go away. Doctors said it was due to the medication I was taking. Nobody seemed to be interested in my irritating cough. A few years later I picked up one of the worst chest infections I have ever experienced. My consultant now believes it was probably pneumonia. However, It was nearly 20 years later that a different doctor noticed my constant cough and sent off a specimen of my sputum to be analysed. The result was I was referred within two weeks for a scan and an appointment was made with a consultant specialist. The diagnosis of course turned out to be bronchiectasis! I had never heard of this lung disease before then.

I understand from research and talking with my consultant that it can often be difficult to find out the cause of this progressive disease. As some members have already mentioned they have had it since childhood. Looking back on my life it is possible with hindsight that there were a number of reasons that could have caused or contributed to it. But unfortunately I will never really know.

N.B... You mention Acos. What is this condition?

ck101 profile image
ck101 in reply to RoadRunner44

Asthma COPD overlap…

RoadRunner44 profile image
RoadRunner44 in reply to ck101

Thank you for replying.

I would put money on the whooping cough/measles and not very well treated pneunpmonia 💕

Very likely! Nice to hear from you too. How are you these days?

Did my last Home IV yesterday, problem with phosphate from blood and all the other stuff waiting for appointment, apart from that I’m bloody brilliant 😂 thank you for asking 💕💕

Hanne62 profile image
Hanne62 in reply to cofdrop-UK

Last one, goodie! One day at a time, cof 😘😘😘

cofdrop-UK profile image
cofdrop-UK in reply to Hanne62

Absolutely. Nice today to not have to faf. I can’t complain though DIY keeps us out of 5* and that’s got be a win win as you know. 💕

You have a lot going on with your health but have a wonderful attitude. You deal with things in such a positive way and make light of your condition. Youreally are an inspiration to us all. I'm so glad you feel a bit better.Look after yourself.

Cxx

Sweet of you to say that RR. Thank you. 💕💕

Inherited alpha1 genetic lung disease. ZZ alelle. Serum level 15.75 mg. Diagnosis 14 years ago. FVC 87%FEV1 26. % one year ago. FEV1 @ diagnosis 58%. Due for PFT this month.

FEV/FVC 34%. one year ago.

DLCO @diagnosis 92% one yr ago, 49%

Emphysema structural none mucosal. No Bronchitis. No liver issue at this time.

No oxygen yet. Carbon dioxide retainer.

Pulse ox high 91-3, low in the 70’s upon exertion.

Wheeze & whistle but no cough. No phlegm.

ck101 profile image
ck101 in reply to Maricopa

Good luck with the PFT! 🤞

Interesting thread, and at this point, for me, particularly so.

I have used HU for some years, having developed a wonky thyroid along the way and found the members over there to be absolutely fabulous, in terms of knowledge and peer support.

In terms of why I am on the BLF part of the site, my lung changes were picked up incidentally when I was taking part in some medical research which involved a thoracic CT, focusing on my heart. I have my very first clinic appointment tomorrow, so hopefully that will be the beginning of my education in respiratory medicine.

In terms of medical history, I had pneumonia at 4, then I was one of those children who would have a cold, be getting over or brewing one. I've also had all the childhood ailments, including rubella 3 times, and whooping cough at 21. My father and one much older cousin lost their lives to fibrosing alveolitis. (Fibrosing alveolitis has since had a re-brand to be called pulmonary fibrosis.)

So what exactly caused my lung changes? I have a feeling I'll never really know.

Bearing in mind I feel extremely well, walked 18 miles a few days ago, and have been progressing some re-landscaping in our garden, involving heavy lifting and digging, I's say thus far, I feel symptom-free.

Fingers crossed tomorrow goes OK and I can begin to understand things a little better.

cofdrop-UK profile image
cofdrop-UK in reply to MMaud

Hope your consultation goes well and gives you some clarity. Xx

MMaud profile image
MMaud in reply to cofdrop-UK

Cofdrop, to be honest, I'm trying to condition myself to not getting too many answers tomorrow.

Of course, I'll have a more specialised interpretation of the CT scans I've had (one reported by a Professor in Cardiac Imaging and the other Consultant (generalist) Radiologist, but othere than that I haven't had any tests or investigations whatsoever. No peak flow, lung function tests or bloods, so I reckon there will be some of that going on.

Bottom line is the explorations and learning has to start somewhere and I reckon tomorrow will be as much about benchmarking my "starting point" as much as anything.

I wonder how often they meet someone asymptomatic.

Having watched a YouTube video a while ago, of an academic (A Brit in the States curiously enough), she commented that it takes her average IPF patient 7 years to reach her for a scan, because they tend to go through various questionable diagnosis of asthma and so on, going through various inhalers and other treatment options. On that basis alone, I have count myself lucky, if you understand my context.

cofdrop-UK profile image
cofdrop-UK in reply to MMaud

I do and from what I have heard from others in the past your academic sounds about right. At least tomorrow will be a start for you and I hope it goes well. Xx

peege profile image
peege in reply to MMaud

All the very best for today MMaud. P

I had severe pneumonia as a baby, but I did not receive a diagnosis of Bronchiectasis until I was 21, after another pneumonia which my family doctor and subsequently a pulmonologist missed for 3 months (I was told it was asthma and to keep using blue inhaler). It was only when an X-ray was done "just in case" that pneumonia was picked up. I was hospitalised and subsequently diagnosed with Bronchiectasis, but the pulmonologist couldn't tell me whether I had been having it since I was little (lungs had always been my "weak point" even as a child) or whether it was a result of the pneumonia I had just had.

GP diagnosed IPF about 15 years ago after a very persistent cough Fast forward to 2020 and my lung consultant now states it is Rheumatoid Arthritis causing my Lung condition

Confused ?

Hi ck101, I have basically copied and slightly edited your reply 😂

For me I had asthma as a child and asthma attacks caused by allergies. I have a strong familial connection to respiratory illness with no Alpha One. I foolishly smoked socially & relatively lightly from 17 to 34. A child of the 60’s I grew up in an age of smog and open fireplaces, parents who smoked and a home with pets. I’m convinced it was the smoking although specialists tell me the damage was probably done much earlier. I’m 58 now have Bronchiectasis, severe asthma and numerous allergies (particularly cats and dogs). Dealing with this since 07 and my FEV1 / FVC ratio had been stable in the high 70s but plantar fasciitis for two years is limiting my ability to exercise and I know my lungs are worsening 😥

ck101 profile image
ck101 in reply to Sparkywoo

I like it and you cant beat a bit of plagiarism every now and again.You are lucky your ratio is stable, a good sign! Plantar Fasciitis is a bitch, have you tried a rowing machine or cycling?

Sparkywoo profile image
Sparkywoo in reply to ck101

Hi, my back really doesn’t like the rowing machine but funnily enough I’m looking at an exercise bike at the moment 😀

ck101 profile image
ck101 in reply to Sparkywoo

& did you really smoke lightly between 17 & 34? Coincidence, What?

Sparkywoo profile image
Sparkywoo in reply to ck101

Yes I stupidly did. It was the fashionable thing to do wasn’t it. I wish more than anything I hadn’t. Despite what they tell me common sense says if you have dodgy lungs and smoke it will do even more damage 😩

ck101 profile image
ck101 in reply to Sparkywoo

It sure was, in a world when we had little money for nice cars, expensive clothes or a phone or iPad to distract us a nicely presented box of fags and an expensive lighter had an attraction. Where I lived there were few gyms and the ones that were there were for hardcore bodybuilders. There was little emphasis on sports like their is now. If only we could turn back the clock.

Sparkywoo profile image
Sparkywoo in reply to ck101

So true, I remember loving the sleek dark red Dunhill cigarette packets. I thought they were so sophisticated 🙄

ck101 profile image
ck101 in reply to Sparkywoo

I smoked those also at one point. Wore Dunhill aftershave at the time too. FFS!

Sparkywoo profile image
Sparkywoo in reply to ck101

Very of the time 😂

ck101 profile image
ck101 in reply to Sparkywoo

Sent you private chat there Sparkywoo

I had a relatively healthy life until I was 49 when I got rheumatoid arthritis, and the in 2012 when I started with a cough. This mystified my drs but in 2013 I had a difficult asthma diagnosis. An X-ray showed I also had bronchiecstasis, probably from either bronchitis or measles when I was a youngster. The coughing stopped in 2017 after I was put on an antibiotic, azithromycin, as a prophylactic.

I’ve never smoked, but unlucky enough to be zz alpha 1, diagnosed at 59. At the moment I’m taking part in pulmonary rehab, which is really beneficial. I would thoroughbred recommend it to anybody if they can get referred. I wonder how many people on this site are alpha, it’s supposed to be rare.

Asthma since childhood. Whooping cough. A parent who chain-smoked. Pneumonia 20 years ago. Now worse asthma and bronchiectasis.

1) Genes 2) Smoking, direct and secondary, and smog 3) Childhood illness, Measles Whooping cough 4) all of those and then 5) easier access of harmful bacteria 6) maybe mold.

My history is much like several others. I had double pneumonia in the harsh winter of 1946/47 pre NHS and pre antibiotics for most people. I’d probably had measles around 18 months too. But bronchiectasis wasn’t formally diagnosed till I was 20. I was told I’d grow out of it. Still waiting for that one at 78!

ck101 profile image
ck101 in reply to bwp91

Surprised at the amount of people who reference Measles. Never would have considered it a factor.

Heavy dose of measles and whooping cough aged 3 years and I think being borne and bought up in a village inn where we lived in the flat above. I remember the ceilings and beams in the bar were yellow with smoking.By 7 years of age I had been in hospital 3 times for sinus operations.The wisdom of time came too late!

I think we’ve largely forgotten the impact measles can have in various ways e.g. causing sight and hearing loss - and death of course. If only we could convince parents who won’t vaccinate their children as measles is rearing it’s ugly head again.

Born just as the war ended, so was another one brought up in the era of coal fires and pea-soup industrial city smog! Had the whole run of childhood illnesses - scarlet fever, whooping cough, measles (twice!) etc.. As a young teenager, developed TB, spent five years in sanatorium, also had lots of surgery. Finally got bronchiectasis diagnosis only 4-5 years ago. I've never smoked, but my father was a chain smoker, and I'm inclined to think that passive smoking played a big part in my lung problems, long before anyone realised the dangers of it.

Hi it was interesting to read your health journey. I have a theory about my illness COPD but fail to get anyone to listen once they hear I used to be a smoker. When I was five we moved into a shop with living accommodation and a bakery in the cellars. We had a coke oven that gave off fumes and flour dust was everywhere. The flour at that time was delivered in hessian sacks which when dropped gave off a cloud of dust. I spent most of my time with Dad in the bakery and eventually worked with him until I married and moved away. We also had an open fire in the living room. This amounts to 19 years of poor air quality I would be interested to hear what people think. Am I right in believing this had something to do with my COPD which was diagnosed as asthma when I was 40.

ck101 profile image
ck101 in reply to Cak3y50

Yes a history of smoking clouds everything else. All these exposures add up however there is a condition known as flour workers lung and its an interstitial disease. I once knew a man who owned a very popular chip shop, he used a coal fire to heat the animal fat. Wrong on many levels. He also succumbed to COPD in his 50's despite a heart and lung transplant. Having said that they didn't have the anti rejection drugs they have now.

I went to my GP when I kept seeing the advert on the TV saying to see your Doctor if you had had a cough for more than 3 weeks, I had had one for 35 years! GP said straight away I think that you have Bronchiectasis. sent me for a CT scan to confirm. It was only then that I remembered having to go to the hospital when I was about 7 for sessions of postural drainage, so I guess i have had it for most of my life.

Hi there CK101, good idea you came up with. I come from a family of Asthmatics, worked behind a bar, lived for many years on main roads, smoked lightly for some years after leaving school. I gave up smoking but after I lost my HUsband I had symptoms of possible cancer, it was cleared but diagnosis was eventually asthma/COPD. I lived through the fogs ,smogs and open fires burning what ever we could find for warmth. I would say it was a mixture of many things and I have irriversible small airway disease like yourself. Most would say smoking but like cancer it takes more than one trigger, plus the asthmatic genes inherited. My mum had a cough just like me and never smoked in her life. Its an amazing subject to probe into.

ck101 profile image
ck101 in reply to katieoxo60

Are you using an inhaler at the moment Katie, I’m thinking about giving the Fostair small particle inhaler a try.

katieoxo60 profile image
katieoxo60 in reply to ck101

I use three inhalers, have done for many years now , I have Seretide 500, Spirava,and ventolin. Have tried others but they do not work as well and one put me in hospital . The best one I had was taken off the market (C0mbivent) but its still used in hospitals for breathing tests.

ck101 profile image
ck101 in reply to katieoxo60

Yes that was a strange one to remove Combivent. Still available as a neb. 👍

katieoxo60 profile image
katieoxo60 in reply to ck101

Yes it is

Hi Katieoxo60, I'm on Seretide, ventodisk and was on Spiriva (now on Braitus as cheaper informed by Doctor) these are all powder applications which are much easier to inhale ... I found all of the pump spray applicators made me have a coughing fit ...I feel rather cheated being put on Braitus which is 10mg rather than Spiriva which is 18mg... Doc tried to convince me they deliver the same amount but Braitus certainly doesn't feel as beneficial as Spiriva....

You have the same problem as myself the sprays make you cough, Even the spiriva is coming in different packet now , I guess same drug but cheaper production however I am struggling to use the devise you put the capsules in due to arthritic hands. Just get so frustrated with all these new drugs in varied different packets, no thought for disabled. Just like the bottles that are child safe. If you ring up they just treat you as if your a pain in the neck. 10mg is not the same as 18mg unless its a different drug that is stronger than Spiriva , checked Braitus is the same drug 10mg is the standard dose for it and it is apparently being used to reduce patients steroid intake and the risk of a related steroid reaction from too much. So that explains why you feel it is less beneficial. Hope that helps or explain and does not confuse you more.

Thanks for researching the reason behind the reduction of the Spiriva 18mcg to Braitus 10mcg Katieoxo60 .... both capsules contain the drug Tiotropium (same) but I don't quite grasp how the manufacturers can claim that one capsule with 18mcg can reduce to the same amount of the 10mcg capsule by the time it enters the body Losing 7mcg along the way after piercing ??

It is obvious to me and it seems to some others too that the Spiriva applicator and 18mcg capsule is much more effective at clearing the lungs than the Braitus applicator and 10mcg capsule... and if 10mcg is the standard dose required they need to do more research with actual patients and not mice or rats whichever they use ...

If anything they are causing more use for steroids as they are not as effective as the previous meds were ...

Does anyone else amongst us have an opinion on the changing of these inhalers ?

Sorry .. Katieoxo60 ... I forgot to mention that thinking about the difference in micrograms between the Spiriva and Braitus is almost halving the dose... so I tried inhaling the Braitus 10mcg twice and guess what ? ... it felt as beneficial as I remember the one dose of 18mcg Spiriva did ...... odd that isn't it ! So those that claim to know ! Don't know... the manufacturers are proving a lesser drug does the shame job as the satisfactory drug...

And on the other note ... childproof bottles are very difficult to open for people with finger and wrist joint problems like rheumatism ... and cause joint pain before you get the painkiller in your system to eradicate it ..

And yes the capsule filling inhalers are difficult .. the Spiriva is a smooth egg shape and you need to grasp it tight to be able to open it but when you use it it's better ... The Braitus inhaler is a more practical shape to grasp but less effective ...

What is annoying me however is the switching of the regular pills we take being switched to a different colour or shape ... again to save money but how many people get confused and just take them anyway .... maybe making themselves poorly...

I am on lots of drugs for different conditions so I now have them blister packed for which I'm very grateful in these money-saving days

You are right it is almost only half the dose and glad you tried two doses and felt better. Perhaps you should talk to your practice nurse or do you have a lung specialist nurse. ? Other than that try making a complaint about the reduction of dosage making it less beneficial for you. Or speak to your Pharmacist poppyshola, I agree with you this change should be tested on patients not animals. Patients should be able to report the results to the surgery or the chemist also, and constant changes can cause mistakes by patients resulting in overdose or as you say making themselves poorly. Patients should be listened to when they report the effects of changed drugs and someone should be able to advice the doctor as to whether the manufacturers are correct or the patients perception is correct. Gps tend to just use what they are told works better. We the patients know different though. Another point is how is this constant changing saving money it never ceases to amaze me. Have a good day.

Yes Katieoxo60, I complained about the uselessness of Braitus to my pharmacy and they said I should ask my GP to change it back to Spiriva which they did for a start then ended up withnit again ... I do attend The Royal Papworth regularly to keep a check on my progress and I forgot to mention this to them but will on my next consult ...

Thats the idea , it is supposed to be whats best for the patient. Take care

Thank you for your best wishes, ladies, gents and anyone I missed. :)

My consultation today went OK. I had tried to condition myself to not getting too much further forward today, but to view it as the start of a learning process. I wasn't wrong.

The Doc I saw took my full history, but seemed to poo-hoo my past medical history, but was interested to hear we'd had a family budgie for a few years during my childhood. We had a decent chat about arthritis which was the beginning of my Father's "journey" ot pulmonary fibrosis. I have a diagnosis of OA, just in my hands. Interesting factoid of the day is OA affects the terminal joints of the hands, and the wrists, whereas RA impacts the middle and upper joints in the hands. (We just spoke hands.)

He asked about exercise, and I thought he was going to fall off his chair when I told him I'd done 18 miles (walking) one day last week.

So, I gave an armful of bloods, to cover all the usual auto-immune stuff, and I'm off for lung function tests, once the appointment comes through.

He did say to me that some people are found to have PF which never progresses, so I'm looking for the queue for that option please!

Other than that, it's a waiting game until I see him again in about a month.

Such an interesting topic and am intrigued reading all your replies, what some of you have gone through, also that most of us will never know what really caused these progressive condition we are now living with each day.

I had a back story of the longest and most painful ear infections as a child that used to last for months at a time and missed so much schooling. I would have blood and pus pouring out of my ears, whistling noses, pain, fever etc

One day dad had taken me to chest clinic (not sure why), think I must have been around 9/10 years old, the only thing I remember is that the doctor said I had small lungs and trachea.

The ear infections stopped suddenly into my teens, but then at around 14 years old I started to get chills quite often and would dose myself up with Lemsip just to make it to school, I never told my parents how often I was ill and would hide it really well because I didn't want to worry them. I was also very sporty at school and we would play netball and hockey outside come rain or shine!

Suddenly at 21 years old I got pneumonia and recovered from it after six week course of antibiotics, but then seven years later, the chest infection started up and never went. I was given so many doses of Amoxycillan for years until one day I got very sick with suspected TB, which actually turned out to be Bronchiectasis diagnosed in 1998.

Both my parents were non smokers, are now elderly but have better working lungs then mine lol

I also had no history of childhood infections, I wish I knew what happened and how. My GP said that ear infection and bronchiectasis are linked, has anyone else heard this?

Thank you everyone for sharing your stories XX

Lung abscess at 50 probably due to inhaling brick dust from building being demolished just across drive from where i was working. This was on the hospital site in summer and windows were all open with debris being deposited over all the work surfaces . Doctor told me it wasnt worth trying to sue the NHS. I hadn't even thought about that. Diagnosed as Industrial Asthma until that consultant retired and new con changed diagnosis to Bronchiectasis on basis of the abscess , but I have recently found out on here that not typical bronch so have asked for second opinion, still waiting for that due to covid and first con ended contact with him .Then 20 years after abscess had PE following broken leg. 10 years later another PE with multiple clots in both lungs. That leg was then shown to have all veins damaged. I think that my breathing problem is due to the scarring of my lungs but have to wait for appointment. Whenever?

Smoked for 31 years 20 aday plus weed very heavy smoking that was alot too, working background I was a welder from the age of 17, later on worked with fiberglass making septic tanks and my last job I was a paint sprayer so lots of factors there. I left that job in 2015 and I quit smoking September 2019 when I had a fev1 of 91% fev/fvc of 68% and suffering with ANXIETY now I have been diagnosed with mild obstruction im ocd every minute of the day about my breathing that I don't breath properly anymore. Currently waiting for my appointment for breathing retraining

ck101 profile image
ck101 in reply to bryan45735

Wouldn’t be too hard on yourself Bryan, most that smoke go through 20 a day. That’s the commonly accepted amount for a number of reasons. The only reason I didn’t was cause I had asthma and couldn’t. Lots smoked 40 to 60 a day for a lot longer than you!

bryan45735 profile image
bryan45735 in reply to ck101

I just feel deflated like most people still very confused but doctor says she happy with my results ect so I have to trust in them

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