New bronch

[sadiett56]

Hi there first time posting, new bronchiectasis after a few years of struggling with symptoms and my asthma being a red herring anyway currently have a chest infection on abx but feeling fed up and exhausted and now off sick from work how do u maintain everyday life whilst feeling so rough, I have seen resp consultant who is currently more focused on allergies than bronch symptoms so feel in the dark any suggestions would be helpful thank you

[monkey65]

Hi Sadie and welcome.

You'll find quite a few of us 'bronchies' here. Do you have a proper diagnosis ie with a CT scan? I struggled for years with a chronic cough, and was fobbed off with an increase in asthma medicines, then treatment for acid reflux and lots of anti-histamines before I was diagnosed, but it has been much better since then.

The usual treatment is the antibiotic azithromycin taken three days a week. have you been given this? This has worked so well for me that I have got rid of all the other meds except seretide (now half what I was taking two years ago) and montelukast. I now take the azi only when I have an infection. I think the montelukast helps reduce the mucus too.

It is really important to get on top of the cough, because this can do other damage, such as hernias, as I know to my cost. Antibiotics are really important if you have bronch. The allergies are important too, because the extra mucus makes the bronch worse, so it is good to get them under control but not if other stuff is forgotten. Chest physiotherapy may be available for you too (depends where you are).

In the short term, if you are not feeling better, get on to your GP for the antibiotics. Longer term, it does get better. As well as getting the right medicine, it's important to;

Don't smoke and don't be near smokers

Try to avoid infection- wash your hands, have the flu and pneumonia jabs, use First Defence spray.

Learn breathing/huffing techniques for getting rid of mucus (others will give more info)

Eat well and try to do some exercise.

Sorry for the long post! Good luck.

[sadiett56 in reply to monkey65]

Thanks for the reply monkey65 yes had ct have bronchiectasis in both lower lobes also spirometry showed some dead lung space have been on seretide for yrs in Jan started on montelukast and carbocysteine but not really helped now starting on uniphyllin but was unwell and saw a diff consultaant who started me on coamoxiclav after sending sample so am hoping it works have felt unwell for so long a year ago was running 3 miles and playing netball am hoping the abx will pick me up a bit am on waiting list for physio just wondering if I should be referred to Papworth or is it too early days for this thanks again for u r advice and hope u are feeling well at present x

[monkey65 in reply to sadiett56]

I'd say don't panic yet- this is a disease that can take time to get the treatments right.

[sadiett56 in reply to monkey65]

Ok thank you I will relax and hopefully abx will work soon

[sadiett56]

Thank u flibertti I have an appt with my consultant in 4 months so I will request a referral to Papworth but don't know what to do if he declines x

[cofdrop-UK]

Hi Sadie and welcome.

You might want to check out your respiratory consultant online and check what his special interest is. Ideally you do need to see a con who has a special interest in cf/non cf bronchiectasis. I was under the care of a resp con whose special interest was industrial resp conditions and for some time now have been seeing a con who has a special interest in cf/bronciectasis, and as Flib says, it can make a world of difference to your treatment.

When you say asthma was a 'red herring', do you mean you do not have ashma. Many of us have both.

Good luck with the physio.

cx

[sadiett56 in reply to cofdrop-UK]

Thanks for ur reply cofdrop yes have asthma have had it since young child I felt was pretty well managed, I guess how my chest feels feels now feels different to how I have ever felt with asthma which is what I was trying to explain to the consultant, I will do some more research but thanks for ur response am just wondering if I can insist on a Papworth referral at early stages or is there a criteria that anyone knows of thanks for your help

xx

[Offcut]

I was a bronchiectasis sufferer in my young years this then moved to asthma in my teens on top. then in my 30's I was found to have heart failure. Picked up a severe infection in 2008 and have been left with RLD and PH and the heart problems. I do not get the same amount of infections now but have pneumonia every 18 months or so. I have a hiatus hernia because of the cough they inform me.

I do think that certain things can bring on attacks so the allergy tests sounds like a win win.

It is important to try and ask as many questions as your time slot allows.

I hope you get it all sorted out soon.

Be Well

[sadiett56 in reply to Offcut]

Thanks you offcut sounds like u have a really rough time sorry to hear that, thanks for ur reply I will arm myself with a list of questions ready for my next consultation,

Take care x

[moodygirl in reply to Offcut]

Hi Offcut

I was given an injection which prevents pneumonia some years ago. It's supposed to work for ever. You should ask about it.

Good luck!

[Offcut in reply to moodygirl]

I have one every 5 years. I keep being told by the nurse it is at least 10 years but my original specialist insists I have one every 5 years and my GP agrees.

[moodygirl]

That's interesting Offcut. Maybe there are different types... I will look into it. Cheers.