Hi Everyone, for those of you who remember I have severe bronchiecstasis and recently carried out a drug trial, well that is all finished now and I am back to Clinic visits. I went to Papworth this week, I saw a Doctor I have not seen before and probably won't see again (she is pregnant) who reviewed my notes, asked all the usual questions, listened to my chest and said 'come back in a year's time'. I was not weighed, had no spirometry test, no walking, nothing. I usually visit Clinic every 3 months and now, to ease the pressure on the staff, the Clinics are very busy I had to wait quite a while, they are asking you to phone one of the Emergency Nurses if you are ill or have any questions.
Whilst at Papworth my Research Nurse came to see me to ask me if I would take part in another trial which only required a blood test so, of course, I said 'yes'. The University of Cambridge and Addenbrookes Hospital are testing the blood of bronchiecstasis sufferers to see if they can find any links between them and so are checking their DNA, this requires 2 phials of blood (an armful!) - let's hope they find something and so can help us all.
All good wishes for Christmas and a Happy and Healthy New Year to you all and thanks for another year of friendship and support. Take care, Love Lizzy x
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skinnylizzy59
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Hi S L. Did they tell you the results of the trial at all?
Yes the NHS are trying to cut down on all clinic appointments I think
My son is type 1 diabetes. & has had all his feet checks cut. His eye checks & blood checks reduced & his appointments with the diabetic nurse made for longer periods of time
I was in 6 monthly checks but have noticed they don't send appointments through every six months. There was a time several yrs ago I was on 3 monthly checks but those days are long gone
I think this is indeed the way the future is going. I also suspect that when Bronchiectasis patients hit 60 and their symptoms and exacerbations start getting worse, that there's a certain attitude of ' well we've done our best, s/he isn't responding to the treatment, so there's not a lot more we can do.' Maybe I'm being paranoid but it seems to me that when doctors get to the stage of not being able to control your illness that they withdraw a little. Who wants hospital beds occupied by people who are going to go home, much the same as they came in ? I think the beds would be given to younger people with curable conditions, if push came to shove.
So far I've had three monthly appointments at clinic but who knows when this is going to change. The health services are getting scarier and scarier each year.
Good of you to take part, lets hope they find something to help us all.
I had a CT scan in August. Still awaiting a clinic apt but as only have mild bronchiectasis do not expect anything. It is great that you participate in these trials. Kaye.
They don't seem able to do anything (other than puffers) about Bronchiectasis? I've had it for 70 years and other than ab's for a flare-up ....nothing. As a child I had annual deep xrays (as they were called then) and a couple of CT scans as an adult, but nothing much else.
So little research and treatment is given for Bronchiectasis, it's as though, until recently , they didn't consider it as severe as other lung problems?
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