Over the years, I've had a diagnosis of Asthma, followed a few years later by COPD, followed after that by Bronchiectasis.
Last summer, I went to the surgery for my COPD review and the nurse said, 'I don't know why you're here. You don't have COPD.' I argued, of course, and she reluctantly went ahead with the review but insisted I had either 'fixed airways disease' or 'restricted airways disease'. By the time I got home, I couldn't remember which one, so I Googled both and discovered they are quite different.
So next, I contacted my consultant who wrote and clarified that my diagnosis is now, 'Chronic Asthma with mild fixed airways disease and Bronchiectasis.'
I am due to see him again in May, but meanwhile, I remain a bit confused about the change. Some qualified people (RESP team nurse, physios for example) don't seem clear about the 'fixed airways' condition. One printed some info for me that suggested that having Asthma with fixed airways disease is worse than COPD or Asthma.
Generally, I'm feeling better at the moment than I have done for years and am enjoying life again. The change of diagnosis has made no difference to my treatment plan or how I'm feeling.
However, I remain curious about it and wonder if others have had a similar change in diagnosis recently as it has been suggested that nothing has really changed except the name!
If anyone reading this has 'chronic asthma with fixed airways disease' I would love to hear from you.
xx Moy
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MoyB
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I was diagnosed asthma at 9 months old, 9 months ago it was changed/reclassified as asthma and airway collapse... the issue is they cant prove I have asthma "but their is some variance in my spirometry" was the latest one
But I've had:
I don't have asthma
I might have asthma
I probably don't have asthma
It's "psychosomatic"
It's anxiety
It's my heart
And I'm sure there is something that I've forgotten
But while I've not had your diagnosis yes I have had mine changed/amended after quite a long time
It gave me an answer to why I kept getting chest infections and why it was getting worse. it means the severe asthma team are now " my best friends" because there's no one else that can deal with excessive dynamic Airway collapse, God half the medical professionals I speak to have never heard of it never mind how to treat it
It also opened up some treatment options Hypertonic saline, respiratory physio that weren't available as just an asthmatic.... unfortunately they have helped but I'm still getting chest infections so I'm back at the hospital next week to discuss starting antibiotics permanently
To be fair I kept getting chest infections as a child and it was never escalated as an adult I kept getting told the above so became determined to find out what it was if it wasn't asthma... 7 years into My being a pain in the ass I found out
But 7 years ago I kept getting chest pains and feeling faint of an evening .... occasionally passing out ... my heart rate was rising with the chest pains 185bpm (and I'd just woken up and hadn't moved)
The first doctor I saw wanted to talk asthma (at this point I had been asthma symptom free for 7 years and hadn't used an inhaler for as long) .... she ran some tests wrote a recommendation to my gp for an inhaler and discharged me
And we carried in from there
4 respiratory teams
An endocrine team
An immunology team
2 full lung function tests
3 ct scans
A cardio team
A bunch of xrays
A cardio pulmonary exercise test
A dynamic ct
A dynamic xray
A methacoline challenge
A mannitol challenge
3 or 4 echocardiocrams
5 or 6 ecg's
A 24 hour ecg monitor thingie
Loads of spirometry by anyone with the machine (gp, hospital etc)
I dunno how many blood tests but I'm sure a few labs have at least a few litres of my blood somewhere
And it was the last respiratory team (the severe asthma clinic) the head honcho consultant has an "interest " in airway collapse conditions and was the only person I've ever met that was clued up on it actually told me that's what he thought it was and to Google it (I did and there is 2 pages on Google it didn't take long) .... a week or so later i asked could I see the video they took using the dynamic scans and it didn't take a genius to work out bits that where touching as the video moved on shouldn't have been touching
A few week safter that the head honcho at the severe asthma clinic said it is that look at this look at that it's EDAC and wrote a letter to me GP to say the same
Wow! You've really been through it, haven't you? I hope that getting a diagnosis might make it a bit easier to live with and that you finally get some treatment that works for you in keeping the infections at bay.
I started long term azithromycin in January and take it three times a week. I'm getting on fine with it and so hope to stay on it for the forseeable future. I don't know if that will be suitable for you or if there are better antibiotics you can take but at least you now seem to be with the right team who will do their best for you.
I have exactly what you have. Fixed small airways obstruction is COPD by another name, but I think the medical profession tend to reserve the latter term for emphysema or bronchitis, but there are other (sometimes unknown) causes, and I seem to fall into that category..
That's interesting. I think it would be helpful if all the medical professionals sang from the same hymn sheet, though, as it's very confusing for the poor old patient! I've never smoked and don't have emphysema or bronchitis. I've been told (by a nurse) that the different diagnosis is most likely due to the fact that my spirometry test showed improvement, whereas with COPD it couldn't do that. I'd like to be as informed as possible before I have my next meeting with my consultant so that if he tries to blind me with science, I'll know what he's referring to. Actually, he's usually very good at explaining things but must have made the decision to change my diagnosis after my last appoinment and he didn't include me in the post list although my GP seems to have been informed.
I believe my treatment will remain the same as for COPD. Is that the same for you?
The reversible bit is the asthma but, if there’s still a remaining reduced lung function (based on the average for someone of the same age and gender), then that will be the fixed small airways obstruction. If you’re already on a dual inhaler, then that is probably helping both conditions.
Interesting issues raised here. What were the results of your spirometry eg FEV1 result and what did the CT scan show? I'm trying to understand my problems.
Hi, Hikingfan.. Unfortunately, although I have my spirometry results on paper, the print is of such poor quality that can't read it! However, my consultant told me that the results were 25% better than the previous ones and this seems to be the reason for ditching the COPD diagnosis as, with that, your results don't have such an improvement. At least, that's what the nurse told me when she was doing my 'unnecessary' COPD review.
My last two CT scans have shown bronchiectasis in both lower lobes. The last one also picked up a nodule which was 0.5mm too small for surveillance.
How are you and what have you been told about your condition(s)?
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