Newly diagnosed bronchiectasis

[Usgang]

Hi all I'm looking for some general advice I have o ly be diagnosed a couple of weeks ago and tbh I'm trying it hard to get my head around this all, reading/searching the internet is really scary at times. I have been diagnosed with bronchiectasis and low vitamin D, one of my many many questions lol is this feeling of being so exhausted, I don't mean tired, although I do sleep a lot longer now I'm not coughing, I'm on about my body feeling so so tired and weak, is this a common symptom or a symptom at all and should it be mentioned to anyone please.

[Stumpy55]

Hello Usgang, firstly, it is very scary when you are diagnosed with this illness, you are amongst friends here who will offer you support and advice, so you won't feel alone. My advice to you is try to take it one step at a time and with the right medication that will help your condition. I suffer with bronchectasis , and I find with coughing a lot you do feel very tired because you are using energy. My doctor put me on Carbocisteine which I take 2 three times a day and they help to clear mucus from chest. I hope you get the help you need. ✋️😊

[bayleyray-uk]

Welcome Usang,

I have Bronchiectasis, Chronic Asthma and COPD and find that my energy levels are very low. When first diagnosed with Bronc. Before being diagnosed with bronc. and then later COPD I could not understand why even after a good nights sleep I still found myself exhausted by late morning and needed to rest. As far as I understand the feeling exhausted is part and parcel of the disease and like Stumpy take things slow things down I work to the principle of one big thing a day and a few small things. These days changing a bed is classed as a big thing for me. It can be a bit upsetting when you first discover that you will have to make allowances in your life for just rest time but you need to start being kind to yourself and not knock yourself out.

Regards

Sue

[Hidden]

Hi Usgang and welcome to our exclusive little bronch club. I have had bronch all of my life so don’t know any different. Yes, exhaustion is part of it particularly when an exacerbation is going on. It’s mainly a matter of getting in control. Making sure that you keep clearing your lungs so as not to let the bugs have a party, take your antibiotics at the first sign of an exacerbation. Work at creating a balance between getting plenty of exercise and fresh air and sufficient rest. Pacing oneself. I was taught at a very early age how to breathe and exercise to loosen and expel the mucus myself, rather than relying on mucolitic drugs. They have their place but being in control of your own physio is generally better in my opinion.

If you can persuade your doc to refer you ( hopeless in my area) a course of pulmonary rehab could be very beneficial. It will give you confidence and many people say that they enjoy it.

You need a good bronch specialist, not just a general respiratory consultant. Find out if your consultant is a bronch specialist. If not, look for one in your area, usually at large teaching hospitals ( an ‘interest’ in bronch stated on a website is not the same as being a bronch expert). Take the name to your GP and insist on a referral.

The vitamin D is interesting and I believe that its part in all lung conditions is under researched. Since it was discovered nearly three years ago that I was very low in vit D I was put on the very high dose course and then maintained with 1600 iu D3 each day. My appetite is better, I have more energy and I have not had a viral infection since starting it. I have only had two exacerbations. I cannot say whether this is luck or vit D but I am keeping my fingers crossed that it continues.

I hope that helps.

[Usgang]

Thankyou all for replying it's nice to know there are people out there that understand, my family at the moment think because I'm not wheezing that I'm back to normal, trying to explain to them what I have is like banging my head on a brick wall, they see me and think there is nothing wrong. No doubt I will be coming back for support and help ad like I said its all so new to me and quite daunting, Thankyou for being there x

[Hidden in reply to Usgang]

General ignorance of what bronchiectasis is and the failure of friends family and the general public to acknowledge that life can be hard has been a lifetime problem. My children simply don’t see it but tell me stories of how ‘poorly’ their friends parents might be with various visible ailments.In 2015 when I almost died of pneumonia and an empyema I had to get myself to hospital ( twice) and they each visited me once in four weeks. They aren’t selfish, they are just used to me getting on with it ( and their Dad was dying of cancer at the time). Lung conditions are hidden disabilities. I have been challenged over my Blue Badge. People say ‘ but you don’t look ill’ to which I now reply ‘ get your scanner out then if you want to know what is wrong with me’. I put myself first now and do what I feel comfortable with.

The funny thing is that recently a colleague at my voluntary job attacked another colleague with bronch when she found out that he had a Blue Badge. I instantly went for her in his defense. I would never be that vociferous in my own interest. It taught everybody there what we struggle with though!

[chubby2x22]

Hi us gang. It's good to talk about it and get helpful tips. I was diagnosed last June with bronchestasis after having pneumonia. I have a good consultant who prescribed spiolto and azithromycin 3 times a week. I feel so much better still tired but no coughing. He but me in the waiting list for rehabilitation but I'm still waiting. Look on you tube there is exercises ,breathing, singing. I sound like a strangled cat but you have to laugh. Jane

[Phil40]

Hi and welcome.

I would just like to say beware of the Internet: some sites are not good or helpful and also if you are anything like me I can extract the worst case scenario out of anything there to fit my own mindset.

I have found some of the foreign sites quite odd and potentially quite dangerous with bad advice.

Good reputable sites are the ones to look at with sensible balanced people contributing.

Like here. But ignore me about 50% of the time because I am unbalanced quite a lot haha.

Regards

Phil

[Usgang]

Thankyou all for your replies means a lot. I don't want to sound morbid or anything but is there a life expectancy with this? Just I have read it's not reversible can only get worse overtime x

[Derek7 in reply to Usgang]

I've had bronchiectasis since infancy and I'm now approaching my 74th birthday. I still consider myself 'fairly" fit, walking, whenever possible, to local shops and parks etc. You just need to look after yourself, live a quiet life but stay active, and clear your lungs three or four times a day if you can. Yes, like you, I feel very tired at times so I rest with a good book or a crossword puzzle, in the garden, weather permitting (sunshine will help your low vitamin D). I don't know your age so I realise, if you are still working, this can be difficult but generally take things easy and don't worry. Good luck!

[Shirleyj]

I also have asthma and bronchiectasis, you have been given lots of advice which is immensely helpful. Welcome to the site x

[Kattria]

I too have Asthma and Bronchiectas diagnosed about five years ago. I take my inhalers when needed and try to clear my lungs when I can. Attended a pulmonary rehabilitation clinic for 6 weeks. Great fun doing exercises like in a gym. I started mat Pilates last year and just go at my own pace.

Not as fit as I would like but getting older. Love to dance so starting back at Zumba class next week and see how I go. Hope this is of help and take account of all the positive vibes on this site. Great people x

[Shimmysue]

Hi Usgang and welcome to our helpful bronch community. I have asthma and bronchi the latter being diagnosed 2 years ago. It's very scary to get your head around in the first few weeks after diagnosis but you will get to know your condition and what is particular to you. Get a referral to physio and pulmonary rehab as they will help teach you how to clear your lungs and to start gentle exercise. Medication helps too, I'm on Azythromycin 3 times a week, carbocysteine for mucous thinning and symbicort for asthma. Two years from diagnosis I have only had 2 exacerbations in the last year and am the fittest I have ever been so you can live a pretty full life. The exhaustion I had in the early days was so awful. Trick is not to overdo things on your good days. Susan x

[cofdrop-UK]

Good advice from your new found friends. As Phil says stick to the reputable sites BLF and Bronchiectasis R Us.

cx