Bronchiectasis

[winter2013]

I am a 61 year old female, diagnosed with bronchiectasis 3 years ago. Still feel am struggling to understand the condition though....especially when I'm infected. Also does it make other people feel more generally tired, anxious and emotionally? Love to hear from a fellow sufferer!

[Hidden]

I to have Bronchiectasis + Asbestosis etc. and I feel drained most of the time.

Any exertion is to much for me on a lot of days (seems to be affected by the weather) and of course much worse with the chest infections.

I'm told both conditions leave you tired etc.

Hope that he;ps

[Watfordgirl]

Sorry, my finger slipped and I pressed 'like' by mistake. I didn't mean to suggest that I like the fact you're struggling.

Hello and welcome. You're in right place. I don't have bronchiectasis but lots of members do and they're very knowledgeable about their condition. Everyone is very friendly and helpful and although we don't all have the same conditions we do share a lot of symptoms, problems and feelings.

I'm sure someone with your diagnosis will be along soon. Sue x

[PastMeBest in reply to Watfordgirl]

If you press 'Like' a second time it takes it off again.

[Watfordgirl in reply to PastMeBest]

Well, that's easy, PMB. Many thanks. Sue x. 🙂

[Hidden]

Hi I have copd but there are some very knowledgeable folk on here with your diagnosis namely StillStanding and O2trees. I am sure they will be in soon. x

[tbeth]

Hi, I also have bronchiectasis and it makes me feel tired and weak a lot of the time. I used to be really anxious but that was before the diagnosis. Now it’s not as bad because I know why I can’t breathe and am receiving the proper treatment. For years doctors told me I was depressed or anxious and prescribed antidepressants because they did not know what was really wrong. I wish you well.

tbeth

[Katinka46 in reply to tbeth]

How maddening, tbeth. Yes, been there, had that bland supercilious, response, the numbers of doctors who have told me that I need CBT is huge... I called their bluff: three counsellors, one health trainer and a clinical psychologist all said there was NO mental health component in my condition. CBT NOT recommended, as the way I thought about things was rational. All said I had a physical condition that must be addressed. I don't think the doctors would have said it to a man?

K x

[Billiejean_2]

Hi W, I take it from your name that you were diagnosed with Bronch in winter 2013. But you probably had the symptoms for quite some time, as it doesn't develop overnight. I've had Bronch for more then 40 years, diagnosed when I was 22. It is a difficult condition, no way round that but with good management, it can be kept under some sort of control. When I was younger, though I was often sick, it didn't stop me from doing anything I wanted to and once the infection was gone, I was jumping back into everything, full tilt and full of beans. But over the years it became more chronic, the infections were harder to shift and I would always end up in hospital for IV antibiotics once or twice a year. But it was still manageable with more good periods then exacerbations. But in 2011-2012, things changed for the worse and it's been pretty difficult ever since. Infections lingering on and on and and into one another and worst of all, regular shortness of breath. So at this stage I would have to agree with you that I find it difficult to cope with physically and mentally and anxiety is something I have to deal with on a regular basis.

But this is because my Bronch is now so severe and so extensive and I've had it for so long. For someone like yourself, diagnosed a few years ago, the outlook is way, way better. Bronchiectasis does scar and damage your lungs but it takes a long time to get to that stage. If you have a good GP and access to a respiratory nurse and treat your infections promptly, then there's every reason for you to be optimistic about the future. Managed well, Bronchiectasis is a condition that can be controlled. Anyone in their 60s, with a long-term lung illness is going to be tired, so just accept that and get plenty of rest. But please try not to worry unduly, as this will just make you tense and more prone to becoming unwell.

Any questions you have about the condition, do feel free to ask here. You can also speak to one of the experts on the BLF Helpline and they'll give you lots of good advice too.

[cofdrop-UK]

A very warm welcome to you winter, although I am sorry you have been diagnosed with bronchiectasis.

I have had non cf bronchiectasis since babyhood and I agree totally with Billiejean's excellent post.

You will need to be your own advocate as primary care and indeed sometimes secondary care can be patchy. Check out the consultants in your area online - you need a respiratory consultant who has a special interest in cf/non cf bronchiectasis. Believe me it makes a huge difference. You also should be referred if you haven't been already to a respiratory physiotherapist. I assume you have had a scan as you have been diagnosed.

Just to let you know after many years in the wilderness and nothing until recently in the way of research specifically for ncf bronchiectasis, (we have relied on research specifically for our CF brothers and sisters), there is a new exciting interest in this condition from groups of very proactive European and indeed international consultants and some funding for specific research into inhaled antibiotics.

You say you are struggling to understand the condition. I am not surprised in the least - I am still learning stuff everyday after 68 years. I don't want to overload you but read this link at your own pace. It is the best in my, and many other bronchs opinions available at present. It is about 3/4 years old and is about to have an update and the European Respiratory Society are putting information together at present.

chss.org.uk/documents/2013/...

I feel any chronic illness makes lots of people prone to depression and/or anxiety and to tiredness. I hope the more you learn about your condition and the more confident you feel, that your feelings will improve.

With very best wishes

cx

[Kerrieblue]

Hi,

I am the same age as you and have had bronchiectasis since 1977. Treatment use to be very hit and miss but is slowly improving. We are all longing for the inhaled antibiotics we keep getting hints about, what a difference that will make. I would suggest finding a good consultant even if you have to go private for the first visit, it would be money well spent in my opinion. Also, have you had any sputum tested and if so, did any bugs show up? A lot of us keep antibiotics at home to start as soon as we feel the need, so you need to establish a good working relationship with your GP. Also nebulised antibiotics can be used at home for certain bugs that make take up residence in your lungs. It is a tiring disease and a short cat-nap mid afternoon if you can manage it could help you to cope better. Avoid anyone who you know to be infectious, even if it sometimes means letting them down, the less infections you can get, the easier life will be. If you would like to know anything else, feel free to ask.

[Pentreath Volunteer]

Welcome W to our friendly site. There has been some excellent advice for you so far. I would add that you should ask for and keep asking to be referred for a course pulmonary rehabilitation. Some will tell you that bronchiectasis patients do not qualify but my consultant was only too happy to refer me. It was of great benefit and with good support from my GP surgery I manage reasonably well with bronchiectasis. Everyone is different but the key that helps me most is to pace myself and try not to get too tired before resting. As I don't get out much I treat myself to books on my Kindle and subscribed to Netflix to have something to look forward to when I need to rest.

[dodg]

Hi there,

Yes, there are times when I think one feels more emotional and anxious, particularly when our lungs are filled up and making life more difficult, although no cure, but miracles are happening every day. I also have asthma with the bronch,sleep apnoea,spondylosis of the spine and there are days when I feel things get on top of me, but I have two wonderful rescue dogs that keep me mobile and am able to get out and breath the fresh air on my lungs, although always mostly tired, still lovely to get outside. I do hope you will be able to enjoy life as much as possible as there is no guarantee how many minutes we have. Try to enjoy, listen to music as I think music is the laughter of the soul.

[hoping2improve]

Hello it is hard to understand - have bronchiectasis too and asthma but as others have already said. This site is great for information.

[Beth1949]

I agree with Billiejean2's input. I'm 67 and was diagnosed with Bx about 5 yrs ago, even thou I have had breathing and sinus issues for close to 30 yrs (diagnosed with allergies, then asthma then COPD).

It has taken years of trial and error to come up with the right meds for me. Plus learning the importance of postural drainage. I use a nebulizer, a percussion vest and a flutter valve.

Several weeks ago, my specialist put me on a new steriod inhaler, it has made a big improvement, a lot less shortness of breath and more energy. I have been able to decrease my prednisone intake as a result as well.

I started asking my specialist questions about my care and ways to improve it.

Bronchiectasis is a progressive illness, BUT you can slow down the progression.

You will also receive a lot of good tips and support from this website, so welcome! Beth

[CCSP-27]

Gosh i'm in admiration of all of you severe sufferers ! I have asthma and bronchiectasis diagnosed just a couple of years ago, but I'm not nearly as bad as a lot of you poorly folk seem to be so I'm very grateful for that .......so far !

I have had 2 winters of 4 months of Zithromax after sputum tests revealed the bugs were odd ones and virulent 😬 I'm interested to read your post Beth about it being a progressive disease and it will worsen as the years go on ! What can I do now to help myself ??? I'm a firm believer in being pro-active rather than hang about waiting to react to a problem. I'm nearly 60 but a young one - we all say that lol

I've many other autoimmune diseases too - I believe everything is connected....... medical folk don't join up the dots !