DH has been officially downgraded from 'Chronic Lung Disease' to 'Asthma with infections'

[KatyMac]

I am guessing this is a good thing; however I am quite surprised at it

His bronchiectasis has gone completely - this is good

I assume he's had A.B.'s? Does he smoke? He could cut out ALL dairy foods that works for my DH's asthma.

Also the Buteyko way of breathing only through the nose controls asthma really well.

Does it affect his treatment in any way?

My Dad has COPD and goes to a nurse who advises him on best treatment options - things like special COPD training classes at the local gym.

He is on Amoxicillin 500mg twice a day
Never smoked
Only ever had 1 asthma attack

Actually it's daft - his treatment regime is the same they have just called it something different

Strange. Wonder if they have some kind of targets.

sorry to hijack thread but ppeatfruit can you tell me about the breathing. feeling very bad with ashtma today. i may try cutting out dairy too (hard).
i suspect it is a good thing though KatyMac - is he getting abit better?

Not noticeable - actually he is generally worse but perhaps with less crises

Concordia..the Buteyko book available is prob. available on Amazon it basically says to breathe through yr. NOSE and NOT gasp for breath. Cont...

It's just making his diagnosis more specific.

DH drinks rice milk there are lots of good dairy substitutes in Health Food shops and good supermarkets.

Katy - if it makes a difference i have had asthma for decades but had NEVER had asthma attack until this summer. it took everyone by surprise. I am typically a "happy wheezer" in that my asthma generally doesnt affect me at all. However given an infection it can flare up very quickly and very rapidly. I am currently on prednisolone to try to get it under wraps and it has been going on since a simple infection back in June. Normally i take no inhalers and dont need any sort of medical intervention but this year because i have been very run down with stress and sleep deprivation my asthma has completely spiraled out of control. it is thought that as soon as i can shift this current infection (5th in as many months) and calm the asthma down, that rebuilding my immune system (rest, extra vits, healthier eating, recouping some sleep dep) then i should be able to rebuild back up to full strength and normal no asthma issues.

I think the difference in diagnosis will make the biggest difference if you try to get travel insurance tbh.

I'm not sure that bronchiectasis can disappear, as it is by definition 'permanent dilation' of the airways.

However, it could well be that the bronchiectasis diagnosis was originally given in error. If he had the CT scan required to diagnose bronchiectasis during an acute infection, I think the build-up of mucus and plugs can appear like bronchiectasis on the CT scan, and hence he could have been given the diagnosis in error.

Either way, it's very good news, and hopefully this will enable them to target his treatment more effectively.

xx

He had an asthma attack in 93 during a chest infection which we were told damaged his lungs (bronchiectasis)

He has been treated at Papworth for nearly 3 years with 2 weeks admission each year, the first planned the subsequent 2 were more emergency

It has made a difference with the travel insurance but I am just surprised they have changed the diagnosis when nothing else has changed

I think it is most confusing as the Physio who came in first said "With bronchiectasis like yours it is important to......"

& then the Doctor said he didn't have bronchiectasis

Can you ask for clarification and just say that you are confused that you had the physio say one thing and then the doctor say something else?

Has he had a CT scan? I think a high-resolution CT is the only way bronchiectasis can be officially diagnosed.

Regarding travel insurance, I think you'd probably want to get an official letter confirming that hte diagnosis has changed, as I have a feeling that otherwise travel insurance companies could wriggle out of paying for any claims resulting from his lungs. When I made a claim (asthma attack & chest infection in USA), they went through all my past medical history, and I suspect they'd try to claim that you hadn't revealed the bronchiectasis, even though the diagnosis was no longer valid?

Just a thought - my claim was several hundreds of thousands of pounds in the end. Well worth trying to get right!

He has had 5 (or maybe 6) ct scans

It's so confusing

The GP confirmed it as well

I've had the same.

A CT in 2004 revealed bronchiectasis, and I have been treated as having it ever since. However, I've had about 4 CT scans since, as I keep having problems with pneumothoraces (not related to the bronchiectasis), and each time these scans have appeared not to show it.

I have decided in my case that it doesn't really matter. Clinically I certainly appear to have bronchiectasis - and even on my current regimen I'm getting monthly infective flare-ups. If it gives me access to the right treatment, then I don't mind.

However, I would certainly clarify it if I had any prospect of travelling. The costs incurred were just too frightening. It also sounds as though you'd feel happier if you were a little clearer, in any case. As Deck says, why don't you ask? You could even write, asking for clarification, as then you'd get back a proper response that you could file and keep hold of. Sometimes appointments can seem too quick to get things sorted out properly, I find.

Dh corrected me - he thinks it's 7 5 with bronchiectasis (in varying amounts), one with just a bit and the latest with none

Letter to come