I have not really written any thing before.
I was diagnosed with COPD in 2008.I saw a specialist recently and was finally given a diagnosis of Bronchiectasis and copd .I have another appointment I 3monts time.
I have asked for azithromicin as my exacerbation has become much worse .Please could anyone adviise meif I'm going down the right road ? I have had to fight to see a specialist should I be seeing one more often this is the first time I have seen one in 10 years.!!
Hi Joan ask your consultant to review your meds and also ask about a referral to pulmonary rehab it all helps. Take the advice he gives and act upon it. If it does not work then ask for another review. Hope this helps you. Let us know how things go.😊 Bernadette xx
Hi Bernadette thanks for your reply.
I have done the rehab twice now.I try to stay active i walk my dog every day also sing in a community choir which I really enjoy winter is hard for me but try to stay active.
I only have bronchiectasis, but am called to the hospital every 6 months for a review. I do feel well cared for by the hospital andwas surprised they see me so often. I suppose it’s variable country wide but do feel you are entitled to this sort of care. Good luck with it and keep up the exercise. That seems to be key.
Thanks for replying I have been told I have Bronchiectasis and Emphysema
I have asked for azithromicin as my exacerbation s are getting worse but have been told that they want to do 3 sputum tests as my sister had TB when I was a child they want to determine what kind of bugs I have . I have to wait another 3months to see the specialist .
Itsy very good that your seen every 6months wish that was the case here its taken 11 years to get my diagnosis
Do you have a Bronchiectasis specialist ?
I have read that it's better for peoplt with Bronchiectasis as it requires different treatment from COPD and other breatheing conditions?
In my local hospital I just saw the normal lung consultant, but they referred me to the Brompton where I saw a bronchiectasis specialist. The advice I got from the physio there was very helpful. I’ve probably had the disease since I was a child but was only diagnosed when I was 67 after bouts of ‘asthma, ’ pleurisy, frequent sinus infections and certainly 10 years of coughing. . I’ve always been physically very active which might have kept it at bay. You can ask for a referral to the Brompton. Where do you live?
Unfortunately I live in Cornwall . I had several episodes of pluresy 30years ago and my last exacerbation I had sharp pains in my lungs when coughing so hence the visit to the specialist as I though it was more bronchial related that just COPD which I was told I had. My condition has deteriorated over the past 3years starting with shingles .
It has left me very anxious but I'm trying to push forward as I feel I have not been getting the right care.
.
Many thanks
Joanx
I really sympathise, Joan. Even though I don’t have COPD I get pain in my chest with the bronch and some anxiety, and some days of fatigue. I had a very bad winter with non stop infections two years ago, and various abs, but I have been much better since I started salt cave, salt nasal sprays, avoiding infected people, lots and lots of warm drinks, and aerobic exercise, as well as breathing exercises. I have an arrangement with the GP that I take a sputum sample in whenever I feel I’m getting an infection, however, the latest at the Brompton is to judge when to take the abs according to if I feel ill rather than the results of the test. Good luck.
Joan1948 - in answer to your query about a bronchiectasis specialist consultant I would say yes, if you can find one. My experience is that staff sometimes look more at the copd component and it is not always helpful. Bronchiectasis guidelines suggest immunity tests when frequent exacerbations are occurring and this is not always followed up by non specialist doctors.
A lot depends on your condition and symptoms. Sputum specimens are a good thing because bugs like pseudomonas are not unusual in people with bronchiectasis.
Bella thanks and yes I am pushing now to get the the right treatment as I feel that I have been fobbed off with antibiotics that just don't help the last time I had an exacerbation I was given 3 lots of antibiotics and steroids .I know that the more infections you get your lungs just get more damage.
At least now I have a specialist so that s a move in the right direction.
Well done and I hope that you can get the right treatment. I know a little of your problems because OH had antibiotics and steroids that didn't work. He is steroid dependent due to asthma and is usually reversible but despite high doses they were not working as they usually do. At the moment, good clearance and nebulized antibiotics seem to have improved matters considerably.
I do wish you well Joan1948. You are right to feel fobbed off.
Gps are not lung specialists!
I had 6 flare ups last year and was absolutely wiped out with no reserves left to fight anything. Still my gp won’t refer me to a specialist and I have yet to have a sputum test.
Seems we have to fight harder and harder to get the right treatment.
Keep fighting though 🙂
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