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I just been diagnosed with this ! Any information to help in understanding how serious this is would be very appreciated , current symptoms coughing blood every 3 weeks , thanks in advance best John
1 like, 7 replies
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swt1227 redpants
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There are varying degrees as I understand it. But it is very important to do postural drainage and keep the airways clear. Stay in close contact with your lung doctor and be very proactive to prevent further damage. Sputum cultures are necessary to be sure that you are being treated with an antibiotic that works on the type of infection that you are having at the time. Do not be afraid to ask questions and get answers from your doctor. Exercise is also important if you are able. Best of luck John.
redpants swt1227
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steve62514 redpants
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http://www.bronchiectasishelp.org.uk/#features/3 is a good resource for new sufferers to save us all repeating generic stuff. Hope that 'Patient' will let the link survive!
Regular coughing of blood, while not something you should get paranoid about is a less usual aspect which others who have faced it might want to comment on
redpants steve62514
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Papillion steve62514
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steve62514 Papillion
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I'm pretty much under control thanks. Saw my consultants from the Papworth Lung Defence team (lady pulmo specialising in BronchX and lady immunologist attached to that unit) in May for an annual review and full lung tests, CT scan and around 10 files of bloods. FEVs have improved (don't have numbers but I know I am blessed with good capacity lungs and no real breathing problems) and they seemed to imply that I was in the low risk category that can wait another year before next monitoring visit. Easy to be optimistic at this stage but I know from clocking the experience of others that things can change so I keep my fingers crossed. Still get 3-4 infections a year but I wait and see until I have certainty that I need antibis: half of the time what looked like an emerging infection gets zapped by my immune system and if I do have to go down the antibi route then I'm usually fully recovered within a couple of weeks.
I have been taking good ole azithromycin, prophylactically 3 times a week, like many of us, for a couple of years now. I have cut out theophylline and more than halved my use of Symbicort inhaler over the last year. Still take a mucolytic - have tried out both carbocysteine and acetylcysteine over the last 6 months in a self-test to see which is better and concluded there's no detectable difference in effectiveness for me. I've gone back to acetylcysteine because the one fizzy tab a day first thing is easier to use. When I forget to take a mucolytic I do notice that my lung clearance routine (15 mins on my back late morning) is a bit more forced so have no plans to cut it out.
Still can't get labs to read anything into my sputum samples, which is only slightly annoying as my generalist recovery antibi has usually worked very effectively. Up until a year ago that was levafloxacin but for one exacerbation it failed (cleared me up in 14 days but then everything came back big time and leva couldn't cope). My local Thai pulmo, who is not highly technical on bronchX but seems rewardingly intuitive on infections, put me on a recovery combo of continuation of 3x per week azithromycin plus 1000mg a day amoxicillin/clavulanic for 10 days plus a short low dose of prednisolone if I don't see an improvement in the first few days: seems to work a treat for me and Papworth agreed with his approach.
Sorry to hear you are coughing blood. I only experienced that once but it was a bit unnerving until the specialist told me not to worry. Easy not to worry when it remains a one-time event.
UPWARDS AND ONWARDS WITH FINGERS AND TOES CROSSED AND WOOD FIRMLY HELD. That last bit seems a bit rude, on review, coming from a bloke :-)
Papillion redpants
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