Bronchiectasis & Asthma

[Carolyn2205]

Hello All, I'm 41 and have suffered with pretty bad Asthma since being a teenager and had regular chest infections but always managed to keep myself fit and worked full time. Over the past 2-3 years the infections got to a point where it was one after the other and after a really bad one and a five day stay in hospital I was finally referred to a specialist. I was diagnosed with Bronchiectasis earlier this year but despite several treatments nothing seems to be helping. Has anyone else struggled to get to a point where life is liveable again?

[mrsmummy]

Hi. We have some lovely members with bronchiectasis and I am sure they will offer advice when they see your post. Meanwhile you can check out some older posts here:

healthunlocked.com/search/b...

Welcome to the forum.

[Carolyn2205 in reply to mrsmummy]

Thank you

[Hidden]

Hi Carolyn and welcome. I'm sorry that you feel so rotten. I have lived with bronchiectasis all of my life and I am 67 now.

Bronchiectasis is a complex little beast. It is clear to me that many people have had it for a long time and have been misdiagnosed as having something else or it has been missed because the concentration on an existing condition which was more obvious. Your history of chest infections suggests to me that this could be the case with you and that you didn't get a diagnosis until you had the crisis of being hospitalised with an infection.

Bronchiectasis comes about because of damage to the respiratory tract and lungs caused by inflammation and infection. The airways and sacs in the lungs become floppy and mucus collects in there. This mucus can become easily infected. It is important that bronchs empty their lungs of mucus every day and that any infection (in us it is called an exacerbation) is treated agressively with antibiotics. This usually means 14 days of a high dose oral antibiotic or if really poorly 14 days of IV of the antibiotic appropriate to the bug which is in there. Anything less is not going to be effective. I don't know what treatment you have been having but it obviously hasn't helped much.Some of us nebulise antibiotic permanently to keep the infections at bay.

You should also have 14 days of the antibiotic which your consultant recommends to keep at home. As soon as you get the signal that an exacerbation is starting up you need to start them.

Bronch needs a combination of expert medical support, the correct drug therapy and vigilant self management. If you get those three things in place you can lead a full life. Most GPs and many general respiratory consultants know very little about bronchiectasis because their training concentrates on COPD.

You need to be under the care of an expert in bronchiectasis. They are usually based at big teaching hospitals. You will also need the help of a physio to teach you how to clear your lungs. My main relationship is with my consultant and her secretary. I only use my GP as a conduit to get my oral antibiotics and inhalers.

By now you should be getting an idea as to whether you are getting appropriate treatment. Look on the internet and check whether the consultant whom you saw is a bronchiectasis specialist. If not, find one and insist that your GP refers you. As with most lung conditions we have to be our own advocates and vociferous in obtaining the correct treatment.

I'm not going to throw any more at you for now because you need to absorb what I have said and figure out where you are now.

There are several long term bronchs on here and we are happy to support you. Once you start to be the one who is in control it gets easier.

I hope that has helped a bit.

[mrsmummy in reply to Hidden]

Great post.

[Hidden in reply to mrsmummy]

thanks Mrs M. When you have somebody who is struggling with something akin to pushing an elephant backwards up a hill whilst knitting fog because they have been given virtually no information or assistance, it is difficult to know where to begin to help them. We have had several people in that position with bronchiectasis in the last week or so. I feel so sorry and frustrated that people with all lung conditions are given so little support. Without BLF and the lovely people on here where would we be.

[Carolyn2205]

Hello, I think you are 100% right when you say it's probably something I've had for a long time. The specialist (not sure if he is Bronc or just general, will check), has me on a number of tablets, Carbosisteine, Montelukast, Nuelin etc as well as 3 inhalers. I had a home visit yesterday from a respiratory nurse who was brilliant and she has arranged for me to attend a pulmonary rehabilitation course plus gave me a lot of advice. I'm due to see the consultant in the next couple of weeks too so guess I just have to be patient. Pretty low especially now I've had to go on the sick from work, which was something I've battled to avoid. It's good to know that feeling human again is possible though!

[Hidden in reply to Carolyn2205]

The drugs you are on concentrate on thinning the mucus so that you can cough it up. However, bronchs don't usually need anything like that unless they have a particularly sticky infection. It does nothing for me. When my sputum thickens up I use an electric flutter device called an aerosure medic. The concentration should be on knocking any residual infection on the head and keeping the numbers of bacteria down with antibiotic therapy and lung clearing. Easing breathing difficulties is more for COPD and of course, your asthma, which does complicate things. It's good that you have people in place and the PR should be fun and helpful. Do let us know how you go on.

[Carolyn2205]

I will definitely keep everyone up to date, and love your description of pushing the elephant...sums things up perfectly!

I do know that I need to have a good chat with the consultant when I go because so far they have told me I have CT confirmed Bronchiectasis, already knew about the Asthma but what's really confused me is that my GP today kept mentioning COPD, same as the nurse did yesterday. So anyway when I asked the GP she said I was also being treated for COPD...so that does explain all the tablets and inhalers but surely I can't have all 3. I'm beginning to think that maybe they have no idea so are covering all bases.

[Hidden in reply to Carolyn2205]

I think you might be right. Check up on the consultant's expertise and get a definitive answer about your complete diagnosis and treatment from them. Then they should tell your GP exactly what is going on. Oh my goodness, isn't it all exhausting!