Bronchiectasis consultation

[johngk]

Hi

Diagnosed 3 weeks ago and saw respiratory consultant last week. Prescribed tablets carbocisteine for throat mucus and physio appointment arranged to show me how to clear lungs. rescue pack arranged at local doctors. had covid and flu jabs. given information booklet . sanitising after every visit outside. trying to avoid infections by avoiding large gatherings and family/friends who have colds. though of course i could still catch something from other situations. my spare time is taken up with junior sports coaching which is outside so looks like winter training will have to cease.

so have i missed anything? have i done everything possible to reduce infections?

after ten weeks i finally stopped coughing and wheezing from my third infection this year. so i have really appreciated last 2 weeks of decent health though i still suffer from fatigue and chest still sore. i have returned to the gym and swimming pool and had some long walks.

This diagnosis came as a shock though i realised half way through this latest infection that something wasnt right. Got my head around it as nothing can be changed except managing it and i have to accept that i will have more infections. so making most of this time to do as much as possible within my limitations

[sassy59]

Hi Johngk, you seem to be getting lots of help but really need to see a bronch specialist as respiratory doctors don’t know enough about Bronchiectasis. Specialists are generally found at large teaching hospitals do try and get a referral if you can. Wishing you well. Xxx

[Hidden]

You seem to be doing everything right. Do check that your consultant is a bronch expert ad sassy advised. There is no reason that you should stop outdoors training in winter. All exercise is good for your lungs and loosening the mucus which you must work on having a routine to get up. There are less germs outside and you won't be as close to other people as in the gym. Wrap up warm and enjoy yourself.

[Alberta56]

Now you've got a diagnosis and will get help in managing the condition, hopefully the infections will be fewer. That's what I have found. If the cold air doesn't affect you, carry on coaching.

[Patk1]

Sounds like Yr doing great!personally,I've carried antibacterial gel for donkeys years- handles,handrails etc all cld contaminate us 🤢.I'd wear a loose scarf,or " necker"+ keep up with Yr coaching as I imagine it's v rewarding for u+them.

U can ask for the pneumococcal vaccine.

I hope Yr fatigue improves+ chest pain eases for you

xxx

[johngk in reply to Patk1]

thanks

have resumed coaching last week and scarf is major part of my kit!!

[O2Trees]

Hi - quite astonishing that you've had proper timely health input. Very unusual these day. Good advice above too.

You asked if there's anything more you could do, well many of us with bronch are prescribed a low dose antibiotic - azithromycin 250mg x3 a week, so just one tablet on three days each week. These get given when people are getting too many bacterial infections, and while ABs don't help stop catching viral infections, they do help with treating bacterial infections. In this case they work prophylactically. Since Ive taken them Ive not had a single bacterial infection and I used to get awful ones. So you could ask your respiratory consultant about this. I take an "azithromycin holiday" for three or four months each summer, when infections in the community are at a lower level, which can help stop tolerance developing.

Good luck!

[johngk in reply to O2Trees]

made a note of that anti biotic and will raise with consultant

i have been very lucky having a great doctor and quick referrals

[Digger0 in reply to johngk]

From 6+ real fruity chest infections a year I am now on Carbocistine, and having had a sputum check I'm on Azithromycin mon, Wed, Fri. I started on the AB's 2-3 years ago and so far (touch 🌴) I have not had a chest infection! I'm very wary of people who are coughing, in shops etc, so all my coats have a mask in the pocket! I am a Cultural Heritage vol. for the Peak District National Park, so am out in the cold checking monuments etc, so I wear a Buff, a necker which I can pull up over my nose so the air I breath is warmer Keeping fit and doing what you enjoy will help - keep up the sports coaching. PS I also carry hand warmers with me - either the rechargeable via USB ones or the single use ones which are compostable, as I find warm hands = warm body

[johngk in reply to Digger0]

thanks digger..contacting my consultant about azith this morning

i also now carry a mask and and necker with me

[Digger0 in reply to johngk]

Excellent. My bronchiectasis does not stop me from going out in the cold and snow

[BronchyBronwen]

Sound advice from others. Singing and walking/exercising as you do both great and reduced severity of my bronchiectasis which is now classed as 'mild'. I take every day: colostrum (G&G capsule), D3 (as high a dose as can get hands on), royal jelly (if I think may be on edge of cold), B Complex every few days, Boots/Vicks First Defence and/or Nasal Defence. In depths of winter, Sambucol Immune Forte (delicious but expensive). Effervescent Vitamin C. Just to avoid colds going down on chest. First sign of sore throat, Covonia throat spray just brilliant. But that's just me ...

[johngk in reply to BronchyBronwen]

hi.thanks for your reply.have taken note of your recommendations

[BronchyBronwen in reply to johngk]

You're welcome Johngk. Forgot to say also 15 drops Vogels echincacea in small amount of water once a day or possibly more to ward off colds. Liquid also best form to take everything as it gets straight into the bloodstream. Stay warm and cosy, all. xx

[johngk in reply to BronchyBronwen]

hi..can you obtain vogels from any chemist or do you buy from a health shop?

i got the covonia spray for the future. but my wife has a cold and cough and she tried it and it really helped

[BronchyBronwen in reply to johngk]

Usually get in from Boots. Really glad Covonia helped your wife; I think it's brilliant stuff. Correct spelling is 'echinacea', and not as previously written by me!

[johngk in reply to BronchyBronwen]

hi bronchyBronwen...its ok i have looked online and holland and barrett seem to be main suppliers

[Ergendl in reply to johngk]

Yes, I use regular singing for lung fitness, and Vick's First Defence and NasalGuard's Cold and Flu Block to lessen the chances of a cold catching on. I also use a saline nasal rinse and mouthwash gargle if my throat feels a bit suspect.

[johngk in reply to Ergendl]

thanks ergendi

[BronchyBronwen in reply to Ergendl]

Yes Ergendl. You're quite right, and forgot to add that Listerine mouthwash (and only that make, apparently) after being in large gatherings eg, is very effective against catching germs.

[LissacFrance]

Have you been diagnosed with bronchiectasis? If so, the usual treatment is azithromycin 3xper week. Azithro is an antibiotic which keeps bugs at bay and aslo works as an antiinflammatory. Have a talk to your consultant. Have a good day, Chris.

[johngk in reply to LissacFrance]

Hi yes diagnosed. Azith recommended in another reply so will speak to consultant.Thanks

[Fruityface in reply to johngk]

John g - I’m same as you - just diagnosed with mild Bronchiectasis- I’m determined not to change my lifestyle - walking and swimming foreign travel etc. However I’m wondering if Carbocysteine adds to the fatigue and weak feeling. Anyone else experienced this.

[johngk in reply to Fruityface]

hi fruityface been on carbocysteine 3 weeks and not found this.. strange thing is my fatigue seems to have lessened alot. i have continued to go to the gym,pool and sports coaching but i have cut down on sessions. also stopped anything strenuous as that makes me tired.learnt what my limitations are i think.am resting more..6 weeks ago i started listening to meditation recordings on you tube, generally just before going to sleep. since then i am sleeping much better and feeling more relaxed overall

[Phill1]

my only caveat to outside sports/ training is not to do it in freezing temperatures. I have had 2 lung bleeds. Both post long walks in freezing temperatures. I hadn’t been informed that this was a potential risk for us bronchs….

Has anyone else been informed / experienced this??

[johngk in reply to Phill1]

yes i will be avoiding freezing temperatures and down pours. i have informed the club i volunteer at that training can be cancelled at short notice. at moment i have been lucky this month with mild temperatures but not going to take any chances over winter

[LissacFrance]

My wife has been on Azithro now for about 4 years. We have both had Covid during this time but she barely had a bad cold whereas I was ill. She rarely has infections, but if mucous starts to turn green than Amoxicillin is required. From memory only twice in last 18 months. take as much exercise as you can, wife is actually at the physios doing breathing exercises and pedalling a bike. Must go and collect her. Physio is more widely used in France, 3x per week and it does make a huge difference especially during winter months. chris.

[johngk in reply to LissacFrance]

contacting consultant this morning about azithro.thanks

[Lutontown]

Make sure your home is free from black mould. This can form anywhere there is damp. So water leaks in your roof, due to blocked or broken guttering, or leaks in your kitchen or bathroom. It tends to hide out of sight. Since eradicating black mould in our bathroom in April 2018, I've had no chest infections (apart from 10 day stay in hospital with pneumonia and pleurisy). I do have bi-basal bronchiectasis, which I'm sure was caused by a 7 month long infection, in 2014, by Staphylloccus Aureus. Intravenous AB sorted it in the end.

[johngk in reply to Lutontown]

hi lutontown..thanks for advice. we are both quite ocd about cleaning , property problems etc so hopefully we will spot anything that can crop up

[Lutontown in reply to johngk]

Yeah. Our mould was behind the bath panel and under the plastic floor tiles. We only found it when the bath and floor tiles were taken up, to fit a walk-in shower. It was due to the bath drain leaking. You would never know it was there. I also found some when our old washing machine died after 18 years of service. It was on the wall behind it when the machine was pulled out. I believe you can get a meter which reads for damp.

[Patk1]

Looks like all angled covered.id not give up winter coaching a thin scarf wrapped loosely,covering mouth so breathe in warm air - unless itstoo much 4u.i carry handgel with me everywhere+frequently use it.Xx

[johngk in reply to Patk1]

hi patk1..invested in snood and working well!! got handgel in car and use it after everywhere i go