COPD /Bronchiectasis : After being... - British Lung Foun...

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COPD /Bronchiectasis

ssafa
ssafa

After being diagnosed with COPD some 4 years ago I have now had a CT scan and advised I have bronchiectasis which is explains why I have had so many problems. Why dos it take so long to be referred.

23 Replies
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Hi well I think if you have ever been a smoker it's automatically considered copd. This happened to a friend of mine too. Maybe also you have both or the bronci developed later? x

I smoked 30 yrs ago and I’ve been told no it’s not because of smoking it’s been too long since you’ve stopped. Ok what’s the cause of this COPD it’s because having Asthma since since a young child over the years your Asthma hasn’t been controlled properly.

Well I have heard lots of stories on here about other members being diagnosed with copd even many years after stopping smoking.

Remember Leonard Nimoy who played Spock in Star Trek? Well he stopped smoking back in the 80's but still died of copd a year or so ago. x

Shaurene
Shaurene
in reply to hypercat54

Ye, the damage was done. No cure. And consider the S*^T we breath in the air.

I only smoked slightly as a teenager but nothing much and never carried on with it but, like you, had asthma as a child mainly due to allergy to animals. However I did live with parents who smoked. Always thought I had asthma but now been labelled with COPD.

Have you now been told that you have copd together with bronchiectasis? Long term asthma, especially if it is not controlled well, can result in the type of damage which is bronchiectasis. Bronchiectasis is often misdiagnosed as other conditions for years because many GPs know nothing about it. Surgery spirometry tests only show that there is an obstruction, so doctors and practice nurses who are only trained in copd presume that the results indicate that. Bronch can only be diagnosed by ct scan. As COPD is emphysema or chronic bronchitis and is mainly cause by smoking. It should have been clear as different to the bronch on the scan. I would suggest getting clarification on exactly what you do have from your consultant. If you do not have a bronch specialist, now that you have been diagnosed with that it is important that you get one for your ongoing care and management. Look for a bronch specialist in your area, they are usually at big teaching hospitals. Take the name to your GP and insist on a referral. Do not take no for an answer. GPs need the advice of a bronch expert to treat you and I’m afraid that we do have to be very pro active in our own interests and vociferous in sourcing the right treatment. Good luck.

Ramy22
Ramy22
in reply to Littlepom

You are fabulous Littlepom! Your advice is second to none and that you take the time to clearly explain things like this is just brilliant!

Littlepom
Littlepom
in reply to Ramy22

Thank you Ramy22. I try to help.

Redrum46
Redrum46
in reply to Littlepom

You must have a specialists and go for regular visits for treatment I have had bronchitis since a child because of huping cough had a Lobectomy at age 13? And I’m still hear age 72 you must have specialist as you will always have the best treatment

Well said Littlepom

I saw a new locum last week who asked me about my COPD and could not believe that I had 7 lots of the same AB prescribed in a 12 month period in 2018.

When I queried this in January this year, I was refused, by one of the senior partners, an X-ray, scan, blood test, sputum test and referral.

He told me “ well you smoked and this is what happens when you do.”

She, had the presence of mind to refer me for an X-ray the same day and is doing a referral to a Consultant.

I hope that you get to the bottom of it now. I cannot understand why so many GPs arrogantly think that they can diagnose and treat such a wide variety of lung conditions when they cannot.

Considering I had pneumonia twice, chicken pox Pneumonia twice and X-rays 20 years ago showed granulomatas then, plus countless doses of bronchitis, yes it’s staggering to be dismissed so.

I am just grateful that in joining this site I have learned so much and now I am learning to be more outspoken at appointments.

I Jan I was not so well armed and EDUCATED about my condition.

Thanks to EVERYONE on this forum who have helped in changing that and I will never again allow another medical professional to treat me so poorly.

Wishing everyone reading here today a really great Sunday and better health.

Sorry I got quite emotional there didn’t I.😂 its only because I feel safe here. 😉

It IS emotional Whitechincilla. Every day we strive, not only to keep our lives going but to maintain our sense of selves. That can be hard enough, especially when, like me at the moment we are struggling with various issues.

When doctors treat us as you and so many have been treated, they are negating not only our illness but our very existence. They have to be taught by us, the people living in the sick bodies, that they should listen, act and most importantly,-

HAVE RESPECT!

Big big hugs to everybody recognising this response.

You have put it so eloquently Littlepom.

I have just re read your post headed “ A small miracle.”

It’s incredible.

On a lighter note,

I hear the post for our next PM is still open, if you have some spare time and are looking for a way to fill it over the next few years 🤣🤣

Failing that I would happily nominate you as the next Minister for the NHS😉😉😉

Blessings and hugs en route x

😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂

maisie15
maisie15
in reply to Littlepom

Great advice, and the same advice u gave me a couple of years ago when I was struggling to get my daughter who is 24 sorted. The gp just kept giving antibiotics and saying that it was her asthma, eventually I demanded a sputum test only to discover they were treating her with the wrong antibiotics! Eventually got a CT scan and was diagnosed with bronchiectasis, but she coughed constantly from the age of 3 months, I cannot help to wonder if she had of been diagnosed earlier there would be less damage to her lungs.

Our GP was reluctant to refer her to the bronchiectasis specialist clinic, he felt that the respiratory consultant was fine, LittlePom, I asked for advice here and fought tooth and nail to get her to a Bronch Specialist and I did, things improved for her after this although she still has the daily grind of lung clearance etc

Thank you and keep up the good work😁😁

Littlepom
Littlepom
in reply to maisie15

I am so glad that you finally got her to a bronch specialist. The daily grind is unfortunately a lifelong thing. We just have to do this to stay well. The routine becomes part of our lives as much as cleaning our teeth and it was drummed into me that I was NOT an invalid. I was diagnosed at 3. I was lucky because when I was 6 my Mum found an eccentric specialist in Leicester who started me on basically the same treatment as we have today and I had the equivalent of 6 years pulmonary rehab and physio. Other doctors thought he was mad but my GP went along with it despite being hauled in front of the local committee for the cost of the antibiotics and oxygen to nebulise some of them through. I have had a normal life including living and working abroad, 2 children, back to uni at 45 and I am still giving it plenty at 69. Good luck to your daughter.

saramic
saramic
in reply to maisie15

Can you say more about the lung clearance please?

ssafa
ssafa
in reply to Littlepom

You make some important points and my COPD nurse was good, (see was a new one) she recognised there was an issue from the spirometry test this time round. She referred me and its clear from the advice given by the consultant and yourself that treatment plans are important. I do think the doctors don't know enough.

Littlepom
Littlepom
in reply to ssafa

I hope that it gets better from now on. If you need help and support in the personal management of your bronch there are quite a few of us on here who have been riding the roundabout for many years and we will be glad to help you.

Darceydoo
Darceydoo
in reply to Littlepom

Hi yes I’ve had a CT scan Resp Dr said he was looking for Bronchiectasis phew no it came back clear.

Seems to take so long as sometimes it’s a process of exclusion.

. Had asthma many years,one spirometry resp Nurse sa is I had COPD. I said didn’t know why I bothered giving up 30 years ago.

COPD Is a very sticky label, conveniently there’s not much treatment for it.

Now 15 years on and loads of health problems later . I have been diagnosed initially with CTD NSIP,now am diagnosed,am getting slight responses after 3 weeks Azatropine

They’re still unsure about COPD..

I suppose it gives them a bit extra to write about.

The term "Bronchiectasis" is getting more and more known. Doctors just lumped most lung conditions as either Asthma or COPD in the past.

I was diagnosed with allergies over 40 yrs ago. Then years later, asthma, then years later, COPD. It wasn't until I was referred to the Mayo Clinic and had a CT scan about 15 yrs ago, that it was Bronchiectasis (COPD with the addition of weakening of the bronch tubes).

The specialist said that Bx is due to childhood illnesses, such as whooping cough. Also, a factor, is events in a person's life that might set it off. I was in my late 30s when I started having breathing problems.

Events in my life that might have contribute: in my early 20's I worked in a sewing factory (around and breathing in fabric fibers). In my late 30s (when I started having breathing issues) we had a house built (what kind of building materials were used?) In my 40s, I was working full time, husband, 3 kids and going to night school to earn my college degree, a lot of stress. We also lived, for 15 yrs, in an area with a lot of factories (air pollution).

But, Bx is getting better known in the medical field as more and more people have been diagnosed correctly,

Beth

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