New diognosis Bronchiectasis - Lung Conditions C...

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New diognosis Bronchiectasis

joan-ann profile image
9 Replies

Last December my doctor sent me to a diagnostic day care centre with breathing probs (long term) and fluid on my lung . They were very thorough and after many tests and ct scan they diagnosed Bronchiectasis, they gave me strong antibiotics with the instructions I had to go back in a month for another scan . I was not given an appointment time .

I visited my gp to see what they had said and my doctor prescribed more antibiotics on their instruction . I asked about the appt for the ct scan she said that isn't yet . I saw her again 6 weeks after the scan date and asked her about it , her answer was let's see what happens . I keep getting chest pains which lessens when I'm able to cough up greeney yellow mucus . This has been going on for 5 months now . My doctor doesn't seem to care . When I have hospital visits for another problem my llungs just seem to close up in the warm rooms ,each person I see says I should have an inhaler .When I cough it's vigorous and I'm left gasping . I'm new to this ,I understand what Bronchiectasis is but I'm not sure what to expect . Help !

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joan-ann
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9 Replies
Toci profile image
Toci

Hi, I don't have the same thing but others on here do. I know you should be referred to a specialist. The BLF website has some info.

blf.org.uk/support-for-you/...

dawn3y profile image
dawn3y

Hi Joan-Ann. Are you still on the antibiotics or were they given as a course because of an infection? And if it was infection, has that gone now? Your dr can send off a sputum sample to find out if infection has gone. Unfortunately, some Doctors don't know much about bronchiectasis and what to do with it, which is why your treatment should be overseen by a respiratory specialist. They need to talk to you about preventing infections so as to avoid further damage to your lungs, how to clear the rubbish from your lungs, when to get antibiotics etc. You need to go back to your Doctor and explain your ongoing symptoms, and ask to be referred to a specialist. Insist. My daughter has bronchiectasis and severe asthma but went for years with inadequate treatment from her dr, who eventually admitted he didn't know how to treat it. We often accept what Drs say as we assume they know best, but I have learned that this is not always true, and you have to be quite assertive to get to see someone who does understand the condition. Make an appointment, explain in detail your symptoms, as there are medications, treatments and exercises that can help with the symptoms you're describing. If you don't get the right treatment, the condition can progress so important not to "see what happens" but be proactive in managing your condition. Take control x

mrsmummy profile image
mrsmummy

Hi, if you are in the UK and you need support, advice or just a chat why not try the BLF helpline? They are available during office hours on 03000 030 555.

gordyboy profile image
gordyboy

Do what dawn3y says

dawn3y profile image
dawn3y in reply togordyboy

This comment made me laugh, you sound like my husband 😂

inhaler1 profile image
inhaler1

Have you tried speaking to the secretary of Dr who requested the scan? I am sure you would get more joy this way as all instructions will be in your notes re follow up scan, I too have Bronchiectcatis and found out how important it is to keep lungs clear of mucus.

Lyd12 profile image
Lyd12

When I was diagnosed with bronchiectasis after a broncoscopy and ct scan, the consultant was very off hand about it, "its only bronchiectasis" she said. My husband asked if breathing exercises would help, and she said casually "oh, you could try that" and referred us to the physio,. since then I have religiously done the exercises daily, to shift mucous, and believe it does help to keep infections at bay. JUst surprising how little attention I was given. Never seen the consultant again, in about seven years, but allowed a reaerve pack of antibiotics by my gp. Coping so far.

peege profile image
peege

Yes Joan-Ann, try calling the consultants secretary, tell her/him that you had thought your 4 week follow up appointment for CT would come in the post, that you are now quite poorly so can you make the appointment for ASAP.

When I was under a consultant at a London hospital I always made my next appointment on the way out at the reception. Good luck.

ol-ly11 profile image
ol-ly11

I have bronciectasis for about 12 years. I was already under a consultant at hospital and when diagnosed was put under a dr that dealt with it. Yes I have 3 inhalers, and I have a rescue pack of antibiotics in case of infection. I would ask to be referred to hospital to see a specialist so they can treat you,. I see my consultant every 3 months and if any problems with my chest I phone the pulmonary specialist nurse for help and don't go to GP much at all with it. Good luck,

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