Diagnosed with bronchiectasis - British Lung Foun...

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Diagnosed with bronchiectasis

Mellypad
Mellypad
19 Replies

41 year old, unwell with six years. Recently diagnosed with bronchiectasis, but have symptoms that my consultant doesn't think is just bronchiectasis. On steride 500mg twice a day, Spiriva two puffs a day, singular, and recently put on antibiotics for 3 months for a bacteria found after bronchosopy in June. Felt a bit better, but still very breathless and exhausted. Have to be careful what I do on a daily basis. Used to have terrible pain in my ribs, chest and back, but the Spiriva and antibiotics helped that a bit. I find exercise or any physical activity is my demon, it totally flattens me and leaves me breathless. Just looking for advice in this condition and if anyone found anything different that helps them. Have a visit with my consultant Monday, be interesting to see what he comes up with. Waiting for challenge test to see if I have asthma as they are still unsure. Currently out of work, and bored!! I'm totally new to this page, and am writing from Ireland.

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LolaEs

Hello, I'm sorry to hear you're suffering so much. I feel your pain having recently been diagnosed with bronchiectasis at 41 after having asthma since I was 18. I am feeling better now that I have got through a pulmonary rehabilitation programme as I have a better understanding of the condition. Maybe once you find out what it is you can see if you can access one in Ireland. Other than that, yoga and meditation are my saviour. If it is bronchiectasis, you will have to clear the mucous using the active breathing cycle (I looked on YouTube as took ages to get to see a physio)- I can't believe how much this and regular exercise has helped but you have to take it slowly. I completely understand how frustrating it is not to be working too but am slowly getting back to it. Be kind to yourself and take each day as it comes. Pm me if you want more info re yoga and meditation sites or to chat. x

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Mellypad
Mellypad
in reply to LolaEs

That you for your response, I tried yoga last year and it didn't suit me at all, but I might try it again. My consultant just gave me antibiotics on my previous visit and said that it should help solve alot of my issues and that I wouldn't need physio or anything else. They helped a bit but not enough.

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poemsgalore1

Hi Mellypad. Just wondering if you were given steroid tablets along with the anti biotics? Hopefully Little Pom should pop in, sh's had Bronch all her life, and knows more about it than most.

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Mellypad

Hi poemsgalore 1

No steroids with the antibiotics, have had them on and off this year. Picked up something after my Mum passed away in April and was left with an awful cough ( still have the cough). So ended up with a few doses of steroids this year. Had them in August when we went on a family holiday, and I had a fab holiday, full of energy and kayaking and walking all week. I feel I could do with them on a daily basis, but that won't happen.

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poemsgalore1

You may already read this, so apologies if you have. It' s fro the BLF website.

blf.org.uk/support-for-you/...

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Mellypad

Haven't read it , will take a look always good to have Information. Was wondering about household cleaning products does anyone use special ones or just the super market ones

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poemsgalore1

Try the helpline, it's free they will be able to advise you.

Call 03000 030 555

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audrey2543
audrey2543
in reply to Mellypad

I have started a Gentle Yoga class which concentrates on breathing and has been very helpful. If you are considered too young for this specialist type of yoga I suggest you tell the yoga teacher what is wrong and ask if they can bear your needs in mind when arranging content.

I am also sure a physio run rehab course can do nothing but good.

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cat50

Hi I’m sorry to hear of your diagnosis.I was diagnosed at the age of 36 with Asthma and Bronchiectasis I am 67 now .I certainly had undiagnosed asthma as a child and was told I would have had the bronchiestas quite a few years prior to diagnosis.The most important thing is to have a bronchiectasis consultant.Many Lung consultants and GPS have no understanding of it .Its all so important to have sputum tests when an infection is looming so you get the right antibiotics.Also having antibiotics kept at home for emergency is good .I nebulise 7% saline twice a day it helps to remove the mucous .I also take carbocysteine which thins the mucous.Like you exercising is a problem and I have had to learn to read my body and rest when my body is telling me too .Like the previous person I do yoga and some meditation and do other exercise in small amounts .Exercise is important to help clear the lungs.This all can be very frustrating but if you look after yourself well you can live your life .

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Mellypad
Mellypad
in reply to cat50

Thank you for your response, hope you are keeping well. I do feel I have either asthma or something else underlying as I struggle on a daily basis. I will have a good chat to my consultant on Monday. At my previous visit my consultant was making out that the antibiotics would be the answer to all my problems, but that wasn't the case. Had job interview yesterday, so hoping to get back to work part time. I love love exercise and frustrates me that I can't do it, but I swim a bit and walk a bit. Hopefully I'll have further progress after Monday, have a good weekend.

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LolaEs

I hope you get to the bottom of it. It can be frustrating finding out what is wrong but keep asking questions and as Cat50 said a specialist should find the right antibiotics.

I was too ill to exercise when I had pneumonia but attending a pulmonary rehabilitation programme literally gave me the confidence to do it again and build up my lung capacity. If you have bronchiectasis, you will need to clear the sputum, which is done by exercising and deep breathing. When I was last ill with a chest infection, I tried some yoga chest opening exercises as well as meditation from my bed and that helped. Yin and chair based yoga may help then you can build up to other exercise. I am a bit biased as I'm a yoga teacher but it can really help calm and deal with stress as well as strengthen the muscles around the chest.

Good luck with the interview. I also find rubbing in lavender oil mixed with a carrier can help with pain relief. Check out the conversions online.

Sending you positive thoughts and hope all goes well.

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Mellypad
Mellypad
in reply to LolaEs

Great thanks for that. I will definitely try something like that as aerobic exercise just seems to much. Some days housework is even hard, but I use that to keep active. I'll keep going!!!

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Mellypad
Mellypad
in reply to LolaEs

Thanks for response, I got the job and will start on the 12th December. Bit anxious about going back to work, but also looking forward to it.

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LolaEs
LolaEs
in reply to Mellypad

That's great news! I'm really pleased for you x

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Outspan

(Sorry in advance, copied some of my text from another reply)

"I too have bronchiectasis and can get asthmatic-like symptoms (consultant's diagnosis); having recently had a serious bout of chest infections that has left me worse than where I was pre-2014, I have had to learn more about my condition and how to tackle it. My daily regime is frequent mucus clearance, a steamer (If I feel particularly worse) with clearance exercises by laying on my back and gently forcing the mucus up to the back of my throat and cough up, using my blue-inhaler if needed to help open the airways more. If you have a friend/family member/partner who could pummel your back at times is also a great way to shift the mucus, I find laying on each side works best."

I have had bronchiectasis probably since early childhood, not diagnosed until I was in my late 20's, assumed asthmatic from being a teenager (shame on the early drs). I have bronch in both lungs, worse in the left, minor but significant (whatever that means!) I too am on Seretide 500mg, Aclidinium, Azithromycin 3 times a week, Mucodyne (optional) I take two per day (I've recently reduced these from 6 per day).

Exercise is a demon and yet we must try so it works our lungs so it can shuffle the mucus and we can clear it out, also great exercises for our lungs. I have a treadmill for those days where it's poor weather or I really don't feel like a walk outside. I can comfortably (most days) walk our block (just under a mile) a little further at weekends, BUT I have to balance this energy with working/cleaning (my husband and boy helps me). Rest days are important. This is coming from where I got knocked to only circa 500 meters probably at my worst, sheer exhaustion. Pre 2014 .. I climbed Snowden! It's a very long struggle that at times I feel complete frustration. I have good days and bad days.

I have been suffering lots of neuropathic pains, ironically more tiring than the chest symptoms, I currently think it's to do with Omeprazole I've been on for several years, I've recently removed these and things seem a bit better, time will tell.

I wish you the best in your recovery. Patience with your body. Oh and lots and lots of water.. helps with loosening up the phlegm.

xx

N.B. I should say I'm 44! ;)

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Mellypad
Mellypad
in reply to Outspan

Hi Outspan, thank you for your response. Yes like you,good days and bad days, but have to keep going. Mind me asking would you have a good lung function, mine is very good and I think that confuses the doctor's.

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Outspan
Outspan
in reply to Mellypad

Mine was 80 last time... literally on the boundary, one less and it's considered in the COPD range I think. Although we have COPD our lung function is ok. What's yours?

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Mellypad
Mellypad
in reply to Outspan

Mine was 94 I think on my previous visit

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Mellypad

Hi All, just to update after appointment with my consultant. All he decided to do was increase the antibiotics from 3 days a week to every day a week if my stomach can take it. Waiting for Challenge test to find out if I have Asthma or not will hopefully have that in January. I also asked about pain relief and he flipped, makes out I shouldn't even have pain!!! Anyone else suffer with pain in their ribs and chest and sometimes out the back of my lungs??? He wants to refer me back to the Rheumatologist for the pain, as she dignosed me with Myfascial pain syndrome. I feel I'm going around in circles and his not understanding how my life is affected on a daily basis...

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