Bronchiectasis - difficultly coping

[Thumbalena]

So pleased to have found this forum and reassuring to know that I am not alone. I have been diagnosed for three years now. The last 6 months my condition has got worse and I have been back and forth my GP. Steroids, weeks of antibiotics and nothing changes. Now I am having difficulty breathing some day more so than others. I am at the point where I think no one believes me. I work full time and have only been off 3 days in the 6 months. Is it a case I am expecting too much and I just have to knuckle down and try and cope. I take my meds and inhalers. Just feel desperate. I just want to feel better.

[Mooka]

Hi Thumbelina

I believe you and you are not expecting too much. Most GPS don’t think understand Bronchiectasis. Do you have a respiratory consultant that specialises in Bronchiectasis? If not you need to be referred ASAP. Have you seen a respiratory physio? Is sounds like you are not on the right antibiotics for the bug you have which is why it keeps coming back. Have you looked at the BLF site on HealthUnlocked? There’s plenty of people living with Bronchiectasis there who can give you excellent advice. BLF also have an excellent booklet on Bronchiectasis. If you can’t find it I will post a link. This needs to be sorted as it’s so draining going from one infection to another and it could be inflicting further damage on your lungs.

[Thumbalena in reply to Mooka]

So sorry time has moved on and I never responded to your reply to my message. Extremely rude of me. I can't believe 2years have passed and nothing has really improved. As I write I have been unwell since 24 May. I am on my 3 week of antibiotics along with steroids. Some days I just want to give up. I am always so tired. I now have a cpap machine. Initially it made a lot of difference to me in the morning, while I am unwell of course I can't wear it.Since the pandemic I haven't seen my respiratory consultant only spoke over the phone. I have received physiotherapy instructions of how to clear my lungs but no matter how hard I try it doesn't help me I can't bring up much. It also makes me dizzy and I lose my balance. So unfortunately I don't feel I am actually managing any better for the two years that have passed.

😞

[NTMbluebird]

Sounds very similar to my story and I also work full time (high stress/professional/etc) and have a family. Things I would suggest:1. Get an Aerobika OPEP flutter device and use it to clear your lungs twice a day. If you doctor won't prescribe one order one off ebay or something. Trudell medical are the UK distributor. It is the number one device on all the forums.

2. Ask to be tested for non tuberculosis mycobacteria (NTM). With Bronchiectasis we are highly susceptible to these and they can cause repeated pneumonia and courses of antibiotics and steroids. It is worth looking these conditions up and following some of the advice, e.g. boiling all drinking water for 10 mins, avoiding steam and water mists, etc. Avoid mould, etc. If you are tested and it comes back negative you haven't lost anything.

3. Reduce steroid intake, in consultation with doctor obvs. Steroids inhibit your immune system and can lead to the same problems. I've halved my inhaler dosage and feel so much better.

4. Exercise. Whatever you can do, do it. It helps with lung clearance (see 1 above). A medical person I saw privately said not to be afraid of the breathlessness, but obviously be sensible.

In short, get as much sputum out of your lungs as humanly possibly every day, take precautions against mycobacteria until you are sure they aren't a problem, try to reduce reliance on medicines (over time, as you feel better) and exercise. Good luck, there is light on the horizon.

There is a fantastic Facebook group for this, I'll find the link.

[NTMbluebird]

Here it is facebook.com/groups/7862321...

[Thumbalena]

Thank you so much for your advise. I will look into your suggestions. Especially for clearing my lungs. I have nearly completed my 3rd lot of oral antibiotics and don't feel any better. actually I feel worse.