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Bronchiectasis
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Jan




Joined: 17 Aug 2007
Posts: 885
Location: Marlborough

PostPosted: Sat Aug 18, 2012 7:22 am    Post subject: Bronchiectasis Reply with quote

Hi. Just wondering if there are any triathletes out there with bronchiectasis?
I was diagnosed recently after recurrent lung infections over the winter. Question
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Sftriguy




Joined: 19 Jan 2013
Posts: 4

PostPosted: Sat Jan 19, 2013 1:07 pm    Post subject: Brochiectasis Reply with quote

Hi...I am a triathlete also just diagnosed with bronchiectasis. Can't find a lot out there about distance athletes and this disease, but I'd be happy to share as I learn. Having asthma was bad enough. This thing really sucks! I'm training for my fourth Ironman and 12th marathon this year, and it's been difficult....
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newarktricky




Joined: 11 May 2007
Posts: 5368
Location: Newark-on-Trent, Notts

PostPosted: Sat Jan 19, 2013 6:00 pm    Post subject: Reply with quote

I assume you have both had the diagnosis via way of referral to a respiratory physician and a CT scan? I hope you have already been offered a macrolide antibiotic such as azithromycin 250-500mg once a day on three days of the week (usually mon, wed and fri) primarily as an anti-inflammatory for the lungs as opposed to an antibiotic? Also, carbocisteine 750mg three times a day for a trial period of 1-2 months as a mucolytic - if helpful for expectorating sputum it should be continued but at a dose of 750mg twice daily and if not helpful stopped.

Make sure if you do get a chest infection that the GP doesnt palm you off with conventional doses and course lengths of antibiotics. As quite a lot of the causative organisms produce a biofilm which is difficult to penetrate, antibiotics at conventional doses e.g. doxycycline 200mg on day 1 then 100mg daily for days 2-7 or amoxicillin 500mg three times a day for a week won't cut it - a 10-14 day course is needed and e.g. doxycycline 200mg daily or amoxicillin 1g three times a day.

Bronchiectasis can co-exist with asthma so ensure that you always take your preventer medication such as beclometasone (clenil or qvar), fluticasone (flixotide) or budesonide (pulmicort).

NT Very Happy Very Happy
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Sftriguy




Joined: 19 Jan 2013
Posts: 4

PostPosted: Sat Jan 19, 2013 7:40 pm    Post subject: Thanks! Re: bronchiectasis Reply with quote

I really can't thank you enough for such a substantive reply! I've had pretty severe asthma for 30 years, but in recent years had managed to control it pretty well. But this past year has been different, and it's been much harder to control. I truly struggled through two half IMs, and Ironman, and a marathon. My allergist finally suggested a different pulmonologist from the useless one I'd previously seen. But sinceI can't get an appt until end of Feb, he suggested a CT scan ahead of that visit. So since I'm having trouble right now, he prescribed a 3-day Z Pack and more prednisone, which I hate.

So I haven't yet gotten a regimen of care or anything and am trying to find out as much as I can prior to the visit in a month or so. There are apparently not a lot of endurance athletes out there with Bronchiectasis, but there is an English distance runner named Chris Cariss (http://www.thefreelibrary.com/Five+years+ago+I+found+it+difficult+to+walk+up+stairs+..now+I+run...-a099543761) who did pretty well. And there's a Pro Ironman athlete named Lisa Bentley, I think, who has CF.

I'm guessing it MIT make my times slower, but I'm just hoping I won't have to give up the sport I truly love....

Thank you again!!!

Scott N
San Francisco
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Pompey




Joined: 04 Oct 2009
Posts: 480
Location: north east

PostPosted: Sat Jan 19, 2013 9:52 pm    Post subject: Reply with quote

good stuff from NT there Smile. don't give up sport! i'm a chest physio and I spent a bit of time working in the bronchiectasis clinic last year, it's worth checking to see if your local hospital runs one so you can get specialist advice on all aspects of the condition. the big thing that we hammer home with all patients with chronic chest problems is the need to keep exercising regularly (obviously cutting back during exacerbations or infections). because of the amount of phlegm you get with bronchiectasis, the lungs are prone to 'silting up' and exercise helps to clear this as well as maintaining the overall lung function. exercise is a brilliant form of chest physio but i would ask for a referral to a chest physio as well so that they can teach you more specific techniques such as postural drainage, active cycle of breathing, and possibly PEP - these are all of particular use if you are more chesty than usual but ideally will form part of a daily routine that helps prevent infections in the first place. there's loads of stuff on the internet about it and there were new guideline produced a couple of years ago that detail what services you should have access to Smile
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newarktricky




Joined: 11 May 2007
Posts: 5368
Location: Newark-on-Trent, Notts

PostPosted: Sun Jan 20, 2013 11:26 am    Post subject: Reply with quote

Pompey wrote:
good stuff from NT there Smile. don't give up sport! i'm a chest physio and I spent a bit of time working in the bronchiectasis clinic last year, it's worth checking to see if your local hospital runs one so you can get specialist advice on all aspects of the condition. the big thing that we hammer home with all patients with chronic chest problems is the need to keep exercising regularly (obviously cutting back during exacerbations or infections). because of the amount of phlegm you get with bronchiectasis, the lungs are prone to 'silting up' and exercise helps to clear this as well as maintaining the overall lung function. exercise is a brilliant form of chest physio but i would ask for a referral to a chest physio as well so that they can teach you more specific techniques such as postural drainage, active cycle of breathing, and possibly PEP - these are all of particular use if you are more chesty than usual but ideally will form part of a daily routine that helps prevent infections in the first place. there's loads of stuff on the internet about it and there were new guideline produced a couple of years ago that detail what services you should have access to Smile


So you still lurk on here then C? Wink I did wonder about you when I posted and the positive contribution you could make to this thread Smile

Hope you're getting fit ready for a week of beasting in the Cairngorms Razz

NT Very Happy Very Happy
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Pompey




Joined: 04 Oct 2009
Posts: 480
Location: north east

PostPosted: Sun Jan 20, 2013 1:08 pm    Post subject: Reply with quote

newarktricky wrote:
Pompey wrote:
good stuff from NT there Smile. don't give up sport! i'm a chest physio and I spent a bit of time working in the bronchiectasis clinic last year, it's worth checking to see if your local hospital runs one so you can get specialist advice on all aspects of the condition. the big thing that we hammer home with all patients with chronic chest problems is the need to keep exercising regularly (obviously cutting back during exacerbations or infections). because of the amount of phlegm you get with bronchiectasis, the lungs are prone to 'silting up' and exercise helps to clear this as well as maintaining the overall lung function. exercise is a brilliant form of chest physio but i would ask for a referral to a chest physio as well so that they can teach you more specific techniques such as postural drainage, active cycle of breathing, and possibly PEP - these are all of particular use if you are more chesty than usual but ideally will form part of a daily routine that helps prevent infections in the first place. there's loads of stuff on the internet about it and there were new guideline produced a couple of years ago that detail what services you should have access to Smile


So you still lurk on here then C? Wink I did wonder about you when I posted and the positive contribution you could make to this thread Smile

Hope you're getting fit ready for a week of beasting in the Cairngorms Razz

NT Very Happy Very Happy


be gentle with me! tracy wants to know if you're bringing your road bike or mountain bike...?
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newarktricky




Joined: 11 May 2007
Posts: 5368
Location: Newark-on-Trent, Notts

PostPosted: Sun Jan 20, 2013 1:44 pm    Post subject: Reply with quote

I don't own a MB and am currently deliberating as to whether to bring winter hack road bike which can double up on turbo or road, or nicer summer road bike and just stick to the turbo (it is more comfortable on the turbo). Hard decision as impossible to tell what weather will be like, the advantage of the turbo is I can do that when it is dark and beast the mountains when it's light.

NT Very Happy Very Happy
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Sftriguy




Joined: 19 Jan 2013
Posts: 4

PostPosted: Sun Jan 20, 2013 6:20 pm    Post subject: Reply with quote

Thanks Pompey and Newark Smile apparently there is a bronchiectasis clinic at Stanford, so I'll have to check that out a bit more Smile

As I understand more about this diagnosis, I'm hoping to try many different approaches to controlling it. I really love hearing from others who do endurance sports, as I do think it adds a dimension to lung disorders that is somewhat unique.

If any of you ever come to race in California, let me know Smile we have some amazing biking, running, and all kinds of other things here in northern CA Smile

Scott N
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Jan




Joined: 17 Aug 2007
Posts: 885
Location: Marlborough

PostPosted: Mon Jan 21, 2013 3:02 pm    Post subject: Reply with quote

Good to have some feedback at last.

Mine started with severe pneumonia & pleurisy last January. Had numerous chest X rays & anti-biotics. When things hadn't improved in April my GP referred me. However my appointment was for October!!!

In the meantime I was lucky to arrange a referral in May to a different hospital where I had a CT scan. After that I had many sputum tests, blood tests etc. I was put on the correct antibiotics (augmentum)which then alleviated the symptoms dramatically. Then I felt much better and started training again. Saw chest physio but to be honest they didn't really tell me anything helpful. I was already doing the breathing exercises as advised by the consultant.

My lung function tests were done again in November & I am seeing the consultant again next week. I guess if lung functions were OK & I am feeling OK then I'll be discharged.

My understanding now is that it's important to keep infection free. I have a stash of anti-biotics at home just in-case. I feel OK now and so far haven't caught anything. I wasn't prescribed an inhaler though. Do you think I should have?
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jonjocariss




Joined: 20 Jan 2013
Posts: 2

PostPosted: Mon Jan 21, 2013 4:51 pm    Post subject: Bronchiectasis Reply with quote

Dear all, a tri friend recently contacted me to say my name appeared on this forum, so i decided to check it out. I am no Tri athlete, indeed, i am restricted to 5 min jogs once a blue moon these days but i thought i may be able to offer some advice to fellow bronchiectasis sufferers. I had some success as a cross country, and marathon runner, I was fortunate to run at international level, however, 10 operations on my right leg have ended my sporting life. Don't really know where to start with regards to Bronchiectasis, i have read the previous posts, which provide some good information. Personally, i was in and out of hospital for IV treatment on a regular basis since i can remember, i struggled to have any continuitiny i.e i could train for 4 weeks, then i got a chest infection, antibiotics, or a hopsital for IV's, and so the cycle continued. I would just say that exercise changed my life, I pushed myself when it was not prudent to do so, but i honestly believe that running gave me a standard of health that exceeded normal medical treatment pathways. regards Chris Cariss.
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Sftriguy




Joined: 19 Jan 2013
Posts: 4

PostPosted: Sun Jan 27, 2013 4:31 pm    Post subject: Bronchiectasis Reply with quote

Chris--

Thanks for adding a post to this discussion. I'm so sorry to hear of your troubles with your leg and very sorry it has curtailed your running so severely. But your story remains a very hopeful source of inspiration for other athletes, amateur and professional alike. I find it interesting that you are really the only international-level athlete for whom I can find a reference on the Internet to having bronchiectasis. So you remain the concrete example of what's possible. And it would seem it speaks to the uniqueness of your accomplishment.

Thank you for that example!

Scott N
San Francisco
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jonjocariss




Joined: 20 Jan 2013
Posts: 2

PostPosted: Wed Jan 30, 2013 6:57 pm    Post subject: Reply with quote

Scott, thanks for your kind words. I note that you have asthma, i also have asthma and spent many a happy hour running around training with my ventolin in hand!

If i can offer you any advise regarding medication, training etc please feel free to ask. The majority of my doctors were happy for me to do exercise, however, one or two thought i was mad, which often resulted in a "difference of opinion" when i was poorly! basically running was fine but not to the extent that i was doing, well that was the medical view but not mine....

good luck.
Chris
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Wr1927




Joined: 04 Dec 2017
Posts: 1

PostPosted: Mon Dec 04, 2017 7:17 pm    Post subject: Bronchiectasis Reply with quote

Hey guys,
Long shot, but any of you still on here? I am a keen club cyclist who was riding centuries and such like earlier this year, but diagnosed with Bronchiectasis (ct scan) in the summer and have suffered a huge decline in performance / ability since, with recurring chest infections and endless courses of antibiotics. Just wondering how others have coped longer term? Thanks!
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Jan




Joined: 17 Aug 2007
Posts: 885
Location: Marlborough

PostPosted: Tue Dec 05, 2017 10:44 am    Post subject: Reply with quote

Hello - I am the OP person.

5 years on and I am probably as fit as I have even been. As you were only diagnosed this summer it may take while for you to feel anything like fit again.
Basically avoid colds etc as best you can. Eat well, rest & listen to your body. Have a pneumonia jab (your GP should have offered this anyway) and annual flu jab. I did have a bit of physio to help with my breathing and also had some 1-1 yoga sessions which helped with my breathing techniques.
I know my lung capacity is compromised but I am dong well with what I do have.
Come back slowly.
I honestly think being physically active has made a massive difference to my recovery. Since 2013 I have done 2 Iron distance plus several Standard and GB age grouper.
Good Luck with your recovery. Very Happy
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