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Bronchiectasis Under Control

Normc profile image
13 Replies

I have seen on here that people consider they have Bronchiectasis under control. What do they call control. I am a lifelong asthmatic & things started to go wrong in October 2012 & eventually in May 2014 I was diagnosed with bronchiectasis. Since about Sept 2014 I have taken a course of antibiotics usually 1 week but after 14 days I have another infection & need another course. It got to the stage where I can forecast when I will be ill. On occasion I have gone 21 days & the most I have done is 34 days & I really should not have left it that long. I am doing the physio breathing (2 rounds)exercises twice daily plus weights, steps, wall press ups. stand sit once a day. I like cycling so opted for that rather than walking. in 2014 I did 3k miles in 2015 2.5k miles. This was too much so I have cut down & felt better for it only 650 miles this ytd. Now I have set up my turbo trainer so I do 20 minutes on it straight after the above physio exercises then have breakfast. My last 3 intervals between Antibiotics were 13 days 12 days & 12 days. I consider under control say antibiotics every couple of months. I am age 71 & I may be losing weight now as well. Question what is considered "under control" & what am I doing wrong.

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Normc profile image
Normc
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13 Replies
evermore profile image
evermore

Hi Norm,

I have bronchiectasis and you should not be having continual infections. I have a few questions, do you have a specialist lung consultant?, Do you have a management plan from this consultant? Have you been sending sputum samples in for testing, you need to know what you are infected with before you can be treated properly.

My guess is that you are never getting rid of the bug you have, you are just killing off the frontline, allowing the troops to rally and attack you again. This will continue unless you sort out what you are dealing with. Once a specific bug or bugs are identified the appropriate antibiotic can be prescribed. Please note that as a bronchiectasis patient your anti biotic course must be a minimum of 10 days, often longer, short courses will not work for you.

You seem to be doing many of the right things but are you bringing up mucous every day? Are you washing your hands frequently, not touching door knobs, rails etc, avoiding people with coughs and colds.

Come join us at bronchiectasisRus where we all have bronch and many have had it all their life, decades of experience from all ages and all walks of life. Many take lots of energetic exercise, many do not. All are warm and welcoming.

Allison24 profile image
Allison24 in reply toevermore

Hello I am having the same problem so after giving a sputum sample finds out I have colonize pseudomonas so I have ongoing infection that have resulted resisted antibiotics use.now I have gallbladder problem and need surgery,hope this helps you.

Waldorff profile image
Waldorff

Consider the possibility that you have gastric reflux. I had infection after infection for years, leading to bronchiectasis. Finally saw the right doc who told me that my e-coli infections could only be GERD, though I had no other indications. I now take a ppi (proton something inhibitor). I still have bronchiectasis but get few to no infections.

The previous reply is dead right - you need longer courses of a/b. I ended up taking 4 weeks of 4 gramms per day of Augmentin.

I'm in the US so the names I use may not be familiar...

Collington profile image
Collington in reply toWaldorff

Augmentin is what i take not less than 14 days if pnomoa dont set in have to hit it hard .But Hospital i go in dont allow that drug know but i always have it at home .

Oh do hope you go under a consultant need that help and surpport

MoyB profile image
MoyB

Like you, I am having infections once a month with predictable regularity. I am set up for sputum samples but until something specific shows up I am taking 2 weeks amoxicillin and 2 weeks prednisilone each time. My consultant has said we will see how the winter goes and in April I might be put on a regular preventative antibiotic. He was not keen to start me on it now as I have asthma and COPD but my bronchiectasis is mild/borderline. My doctor is doing other tests to see if anything else is going on.

My own self diagnosis is that I'm in need of a real good hefty dose of antibiotics to shift a lingering infection that never quite goes! However, I'm not arguing about the other tests as they may show something new that could explain the repeated infections.

Meanwhile, like you, I continue with postural drainage twice a week and that does help to clear the mucous from my chest so I think, since I started it, my infections have been less intrusive ie I have been able to carry on, rather than become a blob in the corner for two week.

I don't find that I can do as much exercise as I would like, so am not up to your standard of fitness, but in other ways I feel we are quite similar. I think I will try bronchiectasisRus and see what suggestions others come up with for managing the condition.

Waldorff profile image
Waldorff in reply toMoyB

One thing to consider is developing antibiotic resistant infections. I now have to take huge doses of antibios.

Haven't had an infection for a while now, touch wood.

Consider 3 times a week 200mg azithromax - supposed to stop infections developing. Also, Mucinex - I take 2400mg a day - a huge help with keeping your chest clear.

Postural drainage is something you can do yourself, several times a day if you need it and are able.

Take albuterol inhalors to help to remove stuff. Also a steroid inhaler for reducing inflammation in the lungs.

Waldorff profile image
Waldorff in reply toWaldorff

I don't know how I forgot - Exercise! If you feel an infection coming, or regularly just for the hell of it, get your breathing going, lungs flushed out by climbing a hill or running round the park. Regular exercise puts you in charge of what's going on - breathe heavily for 15-20 mins several times a week. It WILL make a huge difference.

Waldorff profile image
Waldorff in reply toWaldorff

Sorry - I said Mucinex- that's a US trade name for Guaifenesin. I believe you have to get a prescription in the UK for it. Anybody with difficulty moving mucous should sit on their doctor's head until he writes a prescription for gobs of Guaifenesin.

Normc profile image
Normc in reply toMoyB

I am new to this site so have clicked reply on MoyB's post but hope it appears & you all see it. Thanks everyone. MoyB seems nearest to me in condition. I am in the UK so the system is you are referred to an NHS hospital who allocate a consultant to you. Early 2015, a few months after I was diagnosed I had a final interview with a senior consultant so at the end she said you won't see us again unless your GP refers you afresh. I am not well so saw a doc today who I have never seen before who has sent a sample off I have to go for an xray, a new anti bio & she wants to see me in about 4 weeks. She is talking of writing to the consultant I saw at the hospital . Things are moving. The one thing I have learned from this site is it doesn't have to be like I have been for the last almost 2 years.

Ponder this. June 2014 been diagnosed & the consultant gave me an anti bio for 2 weeks that cleared everything & I felt good. At that stage I had not seen a physio, or a specialist nurse to get my PLAN. that came last few days of aug 14. So I did no breathing exercise till then. 4th July 2014 The Tour de France was coming to Yorkshire where I live so I HAD TO BE THERE so 3 of us cycled a nice 53 mile round trip to see it. Also cycled a bit in July Aug. NO PROBLEMS!!. they all started when I began doing the physio exercises. Makes you wonder.

MoyB profile image
MoyB in reply toMoyB

I've just re-read my post. I meant I do postural drainage twice a day, not twice a week. I do think it helps me as i shift copious ammounts of muck from my lungs every day. If it stayed there I think I would be going down the pneumonia trail more frequently. I think the physio is helpful and can't see how it would be the cause of more problems.

phoenix777 profile image
phoenix777

Hi Normc

I was diagnosed with bronchiectasis 15 years ago but suspect it has been there a lot longer. I always have had antibiotics ready for when I feel unwell, never less than two weeks. I have done loads of sputum tests which have never shown anything. Last year things deteriorated. I started coughing up blood randomly i.e. when I didn't feel I had an infection and felt generally unwell. My gp who had been managing my condition for years fasttracked me to the hospital had a ct scan which showed lots of problems. I have to say the only thing that has evershown up a particular bug was a bbronchoscopy wash which showed up pseudomonas S.A. which I was treated for and mycobacterium avium for which I am on antibiotics for a year! I alsohave a fungal infection but am being ttreated for the ma first. This all sounds horrendous but I feel and look very well now I do my postural drainage every day I exercise by doing normal things walking gardening etc. I eat properly and have an excellent consultant. My advice would be if you feel your health is deteriorating get your gp to refer you. While I was at my worst my xray showed up nothing serious only the ct scan and my lungs sounded fine even with the stethoscope. Go with your own feelings. If you don't feel right something needs checking. But above all keep positive. I think that has helped me through. Hope this is useful.

Maximonkey profile image
Maximonkey

Hi Norm, you sound very fit to me but your repeated infections is a sign that your Bronch is not under control. Are you under the care of a Consultant? If so I would contact them and ask for an appointment to discuss your repeated infections. If you are not, you should be, go and see your GP and ask why you do not have a Consultant and say you are not happy to continue with these repeated infections. I was in your shoes in 2010 through 2012 when I was diagnosed after a CT scan. I had been having repeated infections and the antibiotics were not working and I was constantly being taken to hospital with pneumonia. Because my immune system was so weak etc. I was put on Azithromycin which is a 3 times a week dose of antibiotic, I was also given injections to boost my immunity. Fortunately for me they worked and I am now in my second year without any illness whatsoever. I am very lucky. I hope you get some help very quickly. Take care and let us know how you get on. Maximonkey

Collington profile image
Collington

Hi i had Brobcetisis for 9 years and got worse has years go by .I have ask my consultaint what i can do stop having it so bad . I was told nothing you can do its debre out off air and in home .I have C.O.P.D.has well but at moment its Broncectisis very bad have antibitics like yourself 14 days i also take 3 a week in winter prventive ones I have bleeding and clots usally end up in hospital serouly ill with pnoma so thats all i can say .

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