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Health

Bronchiectasis

(42 Posts)
Lilypops Mon 23-Sept-24 08:28:07

Does anyone have this debilitating lung illness, I was diagnosed a year ago and it’s getting worse especially mornings, The wheeze and crackling from my lungs wakes me up , it’s that loud ! I have to cough and clear my chest then I can get on with the day , though I still cough a lot , How do you manage it ? I would love to hear of any one else having this.

grandtanteJE65 Tue 24-Sept-24 13:47:20

Keep your bedroom as free of dust as humanly possible, because any lung complaint can be aggravated by dust.

If you do your own cleaning wear both gloves and a mask whilst dusting and hoovering and get rid of as many carpets, whether fitted or loose as you can bear to part with.

Frannygranny Tue 24-Sept-24 14:18:52

I was diagnosed with bronchiectasis a few years ago after many severe chest infections. The root cause has been found to be TB at some point in my life (never diagnosed at the time).
I take 2 carbocisteine capsules morning and night. And on Monday, Wednesday and Friday I take an antibiotic, Azithromycin. I also have a supply of Arithromycin to take as soon as I feel a chest infection starting. I also saw a Respiratory Physiotherapist a number of times and he gave me some excellent tips and exercises to help my breathing. I sometimes sound like a dirty phone call!! 😂 Hope you manage to get the correct treatment.

JanDraig Tue 24-Sept-24 18:55:07

Hello Lilypops, I too was diagnosed with bronchiectasis a year ago as I’d had a constant cough for about 6months. An X-ray showed a shadow, which a later CT scan revealed that the tube to one of my lungs and some smaller pockets inside the lung was affected.

Apparently as I’m currently healthy the consultant didn’t advise any treatment other than seeing my Dr. So each time I feel unwell, or cough up coloured sputum, I have to provide a sample which is sent to the hospital for testing to see what infection strain I have. If it’s the usual, I then start on my emergency pack of 14 day antibiotics (which we should all be given as a standby for home and holidays). The antibiotics I take are Doxycycline 100mg capsules. Initially I was worried about taking so many antibiotics, but my Dr reassured me that it was for the best as they keep the condition from getting worse. I also take up any Covid and Flu jabs and have learnt to take tissues wherever I go!

I find exercise very helpful, walking for stamina and ballet type (lots of arm movement/deep breathing which opens up the chest), for expelling that horrid mucus. When my chest seems clogged up, I found that inhaling steam, laced with about 10 Menthol granules by Care+ (it’s a tiny 5g pot) really helps.

I’ve also registered with a website called HealthUnlocked which is really useful. You specify your health condition and then have access to a forum populated by other sufferers who can offer great tips and advice.

Good luck with everything🥰 xx

rocketstop Tue 24-Sept-24 19:10:30

My DH has it and takes Carbocisteine capsules.It started after long covid but he has asthma as well.
He has just had another bout of covid last week, well we both have , it was nasty and he has now ended up with chest infection and has antibiotics and steroids.

Best to try and keep away from any infections with a lung impairment and make sure you seek help as soon as you feel your chest tightening.

Lilypops Tue 24-Sept-24 21:59:09

Hello jandraig Thankyou for taking the trouble to message. I have an emergency pack of antibiotics as well as a steroid prednisone. , as soon as I feel my chest may be infected I take them. And my inhalers too , I think I will try to get a physio appmnts again as so many posters have found it helpful ,
Frannygranny. Thankyou I am not on carbocisteine yet but maybe after seeing my GP. I maybe prescribed them. ,
It’s amazing just how many BX. suffers there are out there , I am not alone x

Lilypops Tue 24-Sept-24 22:03:04

Grandetante. That’s good advice regarding cleaning and dusting , I really don’t think I can get rid of carpets. , I don’t like wood floors and it’s a big old house , it would be cold and sound would echo I think. , I think I would rather buy a very powerful vacuum cleaner for the carpets. I just use a cordless Dyson. Thankyou

Browncow Wed 25-Sept-24 17:09:00

Marydoll

Lilypops

Mary doll. Thankyou for replying. I also have Asthma and Angina , both controlled with meds and inhalers but nothing seems to be helping , I did go to a respiratory physio, but quite honestly it wasn’t helping so I cancelled any appointments , ido the breathing excercises at home but it doesn’t really help ,
I think I just have to live with this and just get on with it ,
I hope you feel better today x

I have microvascular angina too!

I think you should go back to your GP (I know it's difficult to see someone), I just kept on nagging, until he listened.

There are new drugs out (which I hope may help and be suitable), which is why I have been persisting.

Just because we are old and ill, doesn't mean we should be left to suffer.

I hope you get some relief. 💐

Marydoll, what treatment do you take for your micro vascular angina, and is yours triggered by emotional stress rather than exercise? I’m interested as I have had attacks that are not helped by a GNT spray.

Marydoll Wed 25-Sept-24 23:05:46

Apparently, my micro vascular angina is related to my R.A. The pressure in the tiny vessels in my heart is very high. It is triggered by exercise. It may be genetic.
I am part of a research study into it, funded by BHS.
I have clear arteries, low cholorestoral and no leaky valves.
All those years of healthy living have been a waste of time and energy!! I have been told that there is no specific treatment for it.

I have had two heart attacks and GNT spray doesn't make much difference. The angina was only discovered after a heart attack, caused by an allergic reaction to R.A medication.
Apparently I had unknowingly had it fror years, misdiagnosed as a sympton of my COPD.

I am on Ranolozine, Clopidrogel, Rampril, Amlodopine and Frusemide. It is reasonably stable at the moment.

Lilypops Wed 25-Sept-24 23:08:24

Brown cow. I have micro vascular angina, when it was first diagnosed the Drs called it Syndrome X. As they didn’t really know what caused it or have a name for it. When I am out of breath , or out in cold weather or if it’s windy I get chest pain , the tiny micro veins tighten up , I use a gtn spray it does help but I get a bad headache for a while but the pain eases , I take Isosorbide monotrate (Monomax ). 60 Mg two daily and Ranolozine. Two daily. , both help a lot but I still have pain on exertion. I think I would be worse if I didn’t take them, I hope you can bet your DR to give you something that works for you.
Good Luck x

Lilypops Wed 25-Sept-24 23:17:03

Marydoll We sound very similar but I don’t have RA. Thankfully, I also take clopidogrel for a TIA I had in December last year. Ranolozine and Isosorbide monotrate , Felodipine. Ivabradine. All these tablets but nothing for Bronchiectasis, mind you I don’t think I would have room for any more tablets. I wasn’t taking anything like this 10 years ago. Oh to turn the clock back to better health eh ,

Marydoll Wed 25-Sept-24 23:37:12

I was on Ivabradine, but a hospital stay in Coronary Care, after my heart deteriorated, resulted in being taken off it. Apparently it was unsuitable for me.

I am fortunate in that my consultant is conducting research into this, funded by BHS.

In the past many women died from undiagnosed Cardiac Syndrome X. No-one was aware that this condition existed.

Browncow Thu 26-Sept-24 08:25:54

Thank you Marydoll and Lilypops. I need to look at this further x

Mizuna Sun 20-Oct-24 18:09:37

I've had my first flare-up of bronchiectasis since my diagnosis in February. Paramedics were sent out yesterday because after two weeks of Amoxicillin and some Prednisolone nothing had changed and my pulse rocketed. Anyway, the paramedics were surprised I don't have a rescue pack of antibiotics/steroids. I see from re-reading this thread that some of you do.

I will raise this with my doctor but my query here is how would you know you've got a chest infection and therefore when to start using them? Do you call your doctor first and discuss it (our doctors are very accessible, especially for breathing problems)? Even if I'd had them I wouldn't have known I had a chest infection.

PS I had another antibiotic waiting for me at Superdrug which I couldn't get to and the paramedics collected it for me and dropped it back to my flat! It's Doxycycline 100mg so hopefully that will kick the infection into touch.

crazyH Sun 20-Oct-24 18:30:21

Mizuna - that’s my problem too. I have Antibiotics on my repeat prescription., but I don’t really know when I should start them. Some nights when I cough more than usual, I feel I should start ABS and then, the next morning, I am fine. Strange disease 😫

Marydoll Sun 20-Oct-24 18:45:22

I have Doxycycline in my rescue pack.Other antibiotcs contraindicate with my heart meds. I always ask for anti sickness meds, as the nausea is awful.

I am on low dose Azithromycin, three times a week for life.It certainly has helped reduce the frequency of chest infections.
I break open the rescue pack, then phone ASAP.
I know when I have an infection, aching chrst, feeling unwell and feverish, breathing difficulties and of course dirty sputum, either yellow or green.

Tell your GP what your concerns are, * Mizuna*. 💐

Mizuna Mon 21-Oct-24 00:03:41

Thank you both, very helpful.