Bronciectasis: I have copd and asthma... - Lung Conditions C...

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Bronciectasis

sueysue profile image
46 Replies

I have copd and asthma for 22 years, now my doc thinks I may have bronchiectasis. Looking up the symptoms I don't think I have. Are there different types ??

46 Replies
Littlepom profile image
Littlepom

Bronchiectasis can only be diagnosed by ct scan interpreted by a bronchiectasis specialist. There is no point in anyone speculating. GPs know nothing about bronchiectasis and general respiratory consultants very little more because they do not have sufficient training or experience in it.Your GP needs to refer you to a true bronchiectasis specialist who will also know how to treat this complex condition. It would be a good idea for you to find one for yourself by looking on the sites of large teaching hospitals that you can reach. Take the name to your GP and insist on a referral.

sueysue profile image
sueysue in reply to Littlepom

Thankyou. Just waiting on sputum test results then will ask for a referral if need be . Thankyou x

YummyBear profile image
YummyBear in reply to sueysue

I was diagnosed with mild bronchiectasis in May 2020, having had a cough (only after colds) for 37 years)! The likely cause was through having whooping cough 37 years ago. I have rescue packs of Amoxicillin to use as and when a flare-up arises. As a previous reader said, the condition can only be diagnosed by a High Resolution CT scan.

Dottie11 profile image
Dottie11 in reply to Littlepom

This is excellent advice. I had a very delayed diagnosis for this very reason. Dispite awful symptoms, reapeat infections and it is in the family. Cannot stress enough how important to find those that can read the scans and know the condition re respiratory. Thank you.

Littlepom profile image
Littlepom in reply to Dottie11

I’m so glad that you eventually had a proper diagnosis. I hope that you now have a bronch specialist who can look after you and advise your GP on which drugs to give you.

Dottie11 profile image
Dottie11 in reply to Littlepom

No not to date. I am looking to go private and see what can be sorted. The Gp is very good.

Littlepom profile image
Littlepom in reply to Dottie11

unfortunately, with bronch, it isn’t always wisest to go private. Many private consultants are general respiratory doctors and do not, in fact, have the expertise in bronch that the experts in the NHS have, although they will tell you that they have. Also, you are going to need ongoing physio support and regular testing with equipment which is only available at large teaching hospitals. Also, being a chronic condition, insurance companies will not pay for ongoing treatment. Look at the websites of large teaching hospitals that you can get to. Find a bronchiectasis specialist. If they also happen to have a private practice you could go to see them privately in the first instance and transfer to their NHS list. This is what I did in 1982 although he very quickly gave up his private practice, was my consultant until he retired from clinical practice 15 years ago and the lady whom he trained has been my consultant since. At the large hospital where she has her practice she has physio back up, a bronch nurse whom we can speak to, the services of the physiologists for resp tests and links to a newly set up regional system for home IVs if we need it.

When you have a name, take it to your GP and insist on a referral. Good luck, you deserve the best.

Dottie11 profile image
Dottie11 in reply to Littlepom

just pm you.

Jaybird19 profile image
Jaybird19

littlepom is our expert .

i had a lung abscess about 30 years agocaused by inhaling debris from demolition site next to place of work .then told various diagnoses over the years I am now told that i have bronch but not typical ,and other things should be considered. I dont understand that also told i have asthma which tightens the lungs but als o have bronc which has flabby lungs. have been referred NW lung centre to see experts in bronc but still being investigated. interrupted somewhat by covid restrictions.

sueysue profile image
sueysue in reply to Jaybird19

Thanks. Hope you get sorted xx

Alberta56 profile image
Alberta56 in reply to Jaybird19

I was told I have asthma and bronc. Not sure about the asthma- wonder if it is a misdiagnosis, but since the only revue I get is for asthma, I won't say anything. At least I get a peak flow test thatway.

Patk1 profile image
Patk1 in reply to Jaybird19

I've never heard of " flabby lungs"😮. I'd ring the Secretary Jaybird.time u were seen xxxx

LissacFrance profile image
LissacFrance

Littlepom has given you the correct answer. My wife was told she had asthma, it was due to smoking, it was this, that and everything else, and all from so-called specialists. It was n`t until she saw someone at the hospital in Toulouse who clearly confirmed that it was bronchiectasis that she had had for over 40 years that the right treatment was prescribed. Have a good day, Chris.

Izb1 profile image
Izb1 in reply to LissacFrance

I am interested what treatment the French hospitals gave to your wife LissacFrance and if they differ to ours here in the UK x

LissacFrance profile image
LissacFrance in reply to Izb1

Hi, Azithro 3x per week and physio 3x per week. Due to Covid our physio did not want her at his place so he calls here 9:00 Monday, Wednesday and Friday and my wife goes down to our caravan for her treatment. The bed in the caravan is firm and about the right height, it just requires me going out in dressing gown before 8:00 to put the heating on. During the summer twice a week for physio is usually enough and when on holiday she can usually manage with her own breathing technique for a couple of weeks. We have in the past used a physio in Spain when on holiday. We`ll see how we go in June when we hope to disappear for three weeks, including Spain. Have a good day, Chris.

Izb1 profile image
Izb1 in reply to LissacFrance

Thanks for that Chris, just wondered if there was any different treatment in France. We dont have the luxury of physio here in the UK especially home visits but so glad your wife is being seen to. Lucky you going to Spain for three weeks, I am sure that will do you both the world of good, have a fab time x

LissacFrance profile image
LissacFrance in reply to Izb1

Yes we will but not before June. Grandson has op planned for May so we`ll stay here and look after animals while his mum and dad are at the hospital.

Littlepom profile image
Littlepom in reply to Izb1

I have done my own physio since I was taught when I was 6. Good bronch treatment seems to be standardised across Europe now due to consultants and thoracic societies working in conjunction.

Izb1 profile image
Izb1 in reply to Littlepom

I know, you have had a hard time of it LP. I am hoping the UK will catch up with Europe eventually but not holding my breath x

Littlepom profile image
Littlepom in reply to Izb1

I think that you misunderstood me. The treatment of bronch in the UK improved long before it did in Europe and the Middle East still has to catch up. Treatment in Europe ( particularly France) is now on a par with the UK because of the cooperation between UK bronch specialists and European groups. It isn't necessary to have someone perform physio on a bronch patient as it is easy to learn. The UK approach of teaching patients to do it themselves, given the terrible shortage of physios in the UK does ensure that patients can clear their lungs themselves. However, I am not decrying anyone who has a physio to help them as it must certainly help and make clearance less tiring.

Izb1 profile image
Izb1 in reply to Littlepom

Sorry LP, I can only say my treatment with bronch from start to finish was terrible and being discharged by the hospital as there is nothing more they can do for me, just leaves me comparing other countries treatment of this lung problem. Luckily I am now alot better than I was and have learned to handle alot of things myself. Perhaps because of how hard you had it when younger you see the improvements and have a really good consultant. I find we are lacking here in the UK and have to fight too hard to get to see the right people and then get treatment, but I live in hope that things will improve x

Littlepom profile image
Littlepom in reply to Izb1

I do think that you need to fight to get the good treatment that is there with the right bronch specialist. Rotten and inadequately trained GPs and general respiratory consultants are preventing you getting the treatment that is available. Please look for a true bronch specialist on the websites if big teaching hospitals near to you. When you find a name take it to your GP and INSIST on a referral. Don't take no for an answer.

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

Agree.L.Don.My.own.too.from.Being.little.when.not.inhosptial.Gives.you.independance.and.control.X

Littlepom profile image
Littlepom in reply to cofdrop-UK

Certainly does!

sueysue profile image
sueysue in reply to LissacFrance

Thanks

Dottie11 profile image
Dottie11 in reply to LissacFrance

Yes this is my history too. Same amount of time more or less. I am still a bit stunned by it all. Good luck.

sueysue profile image
sueysue in reply to Dottie11

Thanks

Patk1 profile image
Patk1 in reply to LissacFrance

Did she have a ct scan Lisaac

LissacFrance profile image
LissacFrance in reply to Patk1

Yes, and she has a scan every year to see how the disease has progressed. From memory next hospital visit is in April. Hospital visit is a round trip of 200+ miles. Thankfully we do get our transport paid when it is a visit relating to a chronic disease.

helenlw7 profile image
helenlw7

I have severe asthma and bronchiecstasis. I don’t have any symptoms from the bronchiecstasis. It was diagnosed by a consultant after I had ct scan.

sueysue profile image
sueysue in reply to helenlw7

O right. Suppose he could be right then. Didnt know you could have it without symptoms. Strange. Thanks for replying x

Blackcat99 profile image
Blackcat99 in reply to sueysue

I was only diagnosed by pulmonary consultant after GP got fed up with me turning up with one severe chest infection after another, but it is almost certainly result of childhood TB, many decades ago! Looking back, I had had various smaller symptoms which might be associated with bronchiectasis, for quite a long time but nothing that really stood out. CT scan clearly showed the damage. With care and plenty of outside exercise, plus emergency antibiotics at the first suggestion of a bug, I’ve managed to keep infection-free for the past few years (touching all the wood I can see!) Consultant described it as ‘atypical’ .

Maybe you and I are amongst the lucky ones, who get a diagnosis in time to take preventative action, before the damage progresses further? Good luck!

sueysue profile image
sueysue in reply to Blackcat99

Hopefully yes. Thanks fir replying x

stones93 profile image
stones93

The only way to establish a diagnosis of bronchiectasis is to have a CAT scan of the lungs.

Izb1 profile image
Izb1

LP has given a good answer sueysue. There are no different types of bronchiectasis just varying degrees of severity. I am sure this will show up on your ct scan and you can then discuss treatment x

sueysue profile image
sueysue in reply to Izb1

Thanks

Patk1 profile image
Patk1 in reply to Izb1

Just a heads up Izb1,there actually are different types on bronchiectasis xxx

Patk1 profile image
Patk1

There are and stages.a ct scan is needed to diagnose it

ghousrider profile image
ghousrider

good day i hadve got newmoaner i cant spell it propley bronical problems asma / copd all over the period of years all started 2012 tracky in kneck there nothing they can do told me just get on with your life best way you can mghoust rider

sueysue profile image
sueysue in reply to ghousrider

Hope you feel better now x

ghousrider profile image
ghousrider in reply to sueysue

hi well i will never get betterr copd is a lung desae what goes to cancer i just do day by day keep smiling all the best ghoustrider

sueysue profile image
sueysue in reply to ghousrider

COPD does not go to cancer hun !

honeysuckle78 profile image
honeysuckle78

you need a ct scan to confirm my sputum showed nothing

sueysue profile image
sueysue

Yes so I gather now. Thanks x

Timberman profile image
Timberman

As Littlepom says... Currently, the most effective test available to diagnose bronchiectasis is called a high-resolution CT (HRCT) scan. A HRCT scan involves taking several X-rays of your chest at slightly different angles. A computer is then used to put all the images together.

Diagnosis: bronchiectasis - NHSnhs.uk › Health A to Z › Bronchiectasis

So talk to your clinician about a test.

I also agree with most of Littlepom has to say on the subject; sometimes I think I know more than the GP and rely far more on my COPD team despite the fact that bronchiectasis for some bizarre reason is NOT included in the COPD umbrella despite being chronic, obstructive and pulmonary!

Morrison10 profile image
Morrison10

I’ve read all people saying about bronciestasis. I was born with PCD, and my little hair like things that line our lungs, cilia, that are supposed to wave about are immobile. I was diagnosed with Bronchiestasis age 32, taught how to do postural drainage, that I relied on for 50 years, together with keeping antibiotics in hand for when necessary. It’s only in last few years that’s it’s been more of problem, had to find a knowledgeable consultant, who prescribed nebuliser and spirometer. Though NHS supposed to do physio, not available in Midlands, so I pay for twice weekly respiratory physio, make big difference. When diagnosed was told to have sedentary life, sit and look elegant, but with two young children this was impossible. No know that what told to do was very wrong. Best wishes.

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