Bronchiectasis Miracle?!!!!

[Jos57]

I was diagnosed with Bronchiectasis privately by CT scan last September. The respiratory consultant concerned works both privately and in the NHS. My winter was miserable and after reading many posts on this site, I realised I needed to see a Bronchiectasis specialist, so I persuaded my GP to refer me to the John Radcliffe in Oxford......a super hospital and thank goodness I pushed for the referral. To cut a long story short, we had to start from the beginning again and 3 weeks ago I had another CT scan, they were expecting to see a worsening of my condition because of the rotten winter I'd had.....oh no, the scan did not show any Bronchiectasis! The doctors have said they need to see the original scan, but because it is out of area and in the private sector it is going to take time. They cannot answer my questions until they see the scan. They did say on the very rare occasions the bronchi tubes can repair themselves, but I do not believe in miracles, plus I am still having the same symptoms of 12 months ago....fever, lethargy, breathlessness, cough and thick sputum! My thoughts are the original consultant misdiagnosed or was given the wrong results! The John Radcliffe did say they would get to the bottom of my symptoms but I'm so annoyed/cross that so many months have gone by without a proper diagnosis.

Has anyone else come across a similar situation?

[Katinka46]

Yup. How long have you got?

[Jos57]

Sorry Katinka, I don't understand your reply.....how long have I got to what?

[mrsmummy in reply to Jos57]

I think she means she has a long story to tell on this subject and is asking how long you have got to listen. Katinka46

[Katinka46 in reply to Jos57]

Yes. mrsmummy is right. I have had seven years of trying to get a diagnosis. In my case it was not that doctors were saying I had conditions and diseases that i didn't have, as in your case, but that there was nothing wrong with me. No one is saying that now but there is still a lingering whiff of that attitude. But it would take a long time to explain. I was just being flippant. But it has made me somewhat sceptical about doctors' analysis, interpretation and understanding of scans and tests. I take everything, politely, with a pinch of salt now.

[Jos57]

Doh....yep I understand now, so basically I'm not the only one!

I'm happy for Katinka to tell me her story 😀

[Katinka46 in reply to Jos57]

Reading posts here has made me realise that we are not alone with this problem. I think it is particularly difficult when you have unusual or rare conditions. And a lot of those are hard to diagnose. The roots of my problem come from a consultant who said that there was nothing wrong with my lungs. And far too many other consultants simply fell into line behind him and agreed, even though there was mounting evidence that there was something seriously wrong. I knew that I had Chronic Thromboembolic Disease and probably Pulmonary Hypertension in the autumn of 2010. If I had known that it would take four years to get half of that diagnosis I would have been gibbering wreck. (So it's a good job, perhaps, that I didn't!) Another two years to get the rest of that dx, and now another consultant has disagreed, so we are back — not quite to square one — but way back down the road. It was also clear that I had an unusual obstructive airways disease from May 2010. It was not until 2015 that it was being assessed.

But others here have similar stories.

Looking forward to hearing the next episode in your story.

All the best

K

[Jos57 in reply to Katinka46]

I totally agree with you with this site, it has given me so much information re the condition I was meant to have but now don't have! I was getting and am still frustrated that I couldn't get things under control, but hopefully I will eventually get answers. I wish you all the best as well, it sounds like you have had and still having a nightmare.

Keep me updated as well please. I am at the John Radcliffe next week, so I will let you know how I get on xx

[Carnival567]

I am convinced the pulmonary nurse at my GP practice, who comes from a different hospital from where I am treated thinks I am a malingerer even though my consultant respiratory physician says my lung condition is severe and my cardiologist says I am a difficult therapeutic case. In my experience of more than fifty years of dealing with the medical profession at every level I am more than ever convinced you have to know as much as possible about your own condition, because your GP probably won't. My motto - you have to be well to be ill. Good luck!

[Jos57 in reply to Carnival567]

Thank you, I, at the moment have confidence in the John Radcliffe xx

[Katinka46 in reply to Carnival567]

I so agree. One of the problems with OB is that the Spirometry numbers can be relatively mild. And so the nurses who are used to COPD do not realise how severe it is. And, of course, Spirometry does not show the airtrapping. I am lucky that at the moment my consultants are happy to accept my research and understanding of the condition.

K x

[Jos57]

I am at the John Radcliffe next week so if they haven't received the scan I WILL get it! Thank you for the advice xx