How do you get anyone to help you? 2 years I've been diagnosed. Absolutely no help from anyone. GP just gives me prednisone and Amoxicillin for exacerbations, no other help. Is this right? My quality of life has dropped significantly I can barely walk places yet GP says I should just ask for lifts places. 2 hospital stays in 2 months, just get given nebuliser and sent on my way.
I feel so let down and lost. How do you get help for this? I'm only 32 and I feel about 80!
No this is not right. Your GP doesn't sound like they are doing their job properly. You should have been referred to a chest consultant at your local hospital, and given proper advice, long before now. But with Covid around, it isn't the most promising time to start. I really have no idea how they go about examining new patients these days, but you must find out. When I was diagnosed I had regular respiratory tests, but it has been explained to me that I can't have them nowadays.
I do feel sorry for you having to put up with this at your age. I felt hard done by getting vasculitis and all its problems, which included bronchiectasis, when I was in my sixties, but am grateful it wasn't earlier.
I hope you can progress from here, and that others on this site will have good advice.
Good luck and best wishes.
This isn’t right at all. You need a referral to a respiratory consultant who specialises in Bronchiectasis. Most of us have carbocistene to help loosen the mucus and a referral to a physio to teach you how to bring up the mucus. You could look up active cycle of breathing on YouTube if this is a problem for you. Many take regular antibiotics to lessen the chances of infection. Most GPs don’t know much about Bronchiectasis which is why they need the guidance of a consultant. Your quality of life isn’t good enough and you deserve better.
Hi, sadly this has been my experience since diagnosis 10 years ago. It is refreshing to read the comments below and that most are clearly treated well.
I have been prescribed with Trelegy and amoxicillin and pretty much nothing else and have unfortunately become worse over the years.
All I would suggest is that you keep on at your GP and if you don't get anywhere change surgeries!
I didn't and regret it so good luck and take care.
Glyn
Agree with the others, a specialist referral is needed. Before I was diagnosed with bronchiectasis, I was having monthly chest infections- I had to suggest to the GP that it might be time to be referred. I obviously met the referral criteria (whatever that was) & the referral happened
Hello, sorry to hear your experience but it seems so very common. I have gained nearly all my information and guidance about managing bronchiectasis on this site. Main advice is to insist your GP does a referral to a specialist, you can look at those nearest you online - I travelled to The Royal Brompton, still have to be very proactive & assertive but a good management plan is essential start, best wishes.
Agree with everyone - you need to find a pulmonary doctor who specializes in bronchiestatis. Been dealing with this diagnosis for 6 months with no answers. Found a bronchiestisis specialist who I am seeing tody
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