Possible bronchiectasis

[Sooos]

So, four years ago I contracted whooping cough at the beginning of the year... and ended 2014 with a five day hospital stay with pneumonia.

I was told following a CT scan that I did not have bronchiectasis or lung problems.

The past four years have been full of chest infection after pneumonia after pleurisy.....at least 3 times a year.

So I requested going back to the respiratory team at Stoke Mandeville hospital ( who looked after me in 2014)

I’ve seen a respiratory consultant who says she can see bronchiectasis on my scan from 2014, although I don’t think she specialises in BE.

To date I have seen a consultant, had spiro done ( one in December showed nothing) and have a CR scan booked for the 28th.

I’m so glad to have found this site and gleaned so much information from your posts already. I’m hoping I’m better armed when I see consultants after the tests are completed.

One question ..... I don’t think anyone on the respiratory team at SM specialises in BE, not sure if anyone can confirm or not?

So I have looked at Oxford, where there are a few so hopefully I can see them on the NHS or privately if I need a diagnosis confirmed.

I’m hoping that by the time the next infection appears, that I will have a clear idea of the correct treatment.

If it is bronchiectasis then the last four years have seen me treated incorrectly by pretty much every doctor I’ve seen.

Really happy to have found you all .... and look forward to meeting you all x

Sooos

[Katinka46]

Welcome to this forum. What a horrible time you have had. I sympathise and identify with your situation. Again it seems that a CT scan has not been properly interpreted. Sometimes these scans are presented to us as the answer to everything but of course it depends on the skill and experience (and even the expectations) of the doctors/radiologists who look at them.

I hope things progress better for you in the future.

All the best

K

[Sooos in reply to Katinka46]

Thanks K,

I’ve also had a GP throw bronchiectasis into the mix.... while refusing to give me antibiotics... two days later a trip to A&E confirmed more pneumonia and pleurisy.... so I now refuse to see her...

I’m busy reading my way round this site and taking notes so I can be in control x

[Katinka46 in reply to Sooos]

I plucked up my courage to tentatively ask my consultant for a second opinion on a HRCT scan that did not appear to show what we both expected (knew) was there and found that he was already thinking along those lines and had another radiologist in mind. Often doctors are happy to have second opinions because it takes the pressure and responsibility off them. My referral to the Royal Brompton came about because the consultants themselves wanted another viewpoint on my rather complex case.

Kx

[cofdrop-UK]

A very warm welcome to you Sooos. So sorry to hear the problems you incurred so far in getting a diagnosis and treatment.

You seem to have a good proactive handle on your future treatment and in finding a respiratory consultant with a special interest in bronchiectasis. Good idea to go to Oxford.

europeanlunginfo.org/bronch...

A bit of light reading for you!

Cx

[Sooos in reply to cofdrop-UK]

Awwww thank you C x

I shall read and take notes x

[Ergendl in reply to Sooos]

All the best, Sooos. Hope these posts help you in your campaign for better treatment for your condition.

[Sooos in reply to Ergendl]

Thank you x

[Claudine]

How often to we hear similar stories - misdiagnosis for several years before the penny drops! Well done you. My problem down here is that there are no specialists other than in London. Getting to and from London in the winter months is impossible without taking one helluva risk re infection. In the middle of the country you can go in several directions to find the right person. Good luck. This site is extremely useful.

[Sooos in reply to Claudine]

TY x

[Hidden in reply to Claudine]

Where do you live Claudine?

[Claudine in reply to Hidden]

Surrey. Do you know of a Bronch specialist in this area by any chance?

[Hidden in reply to Claudine]

I was wondering where you were because you said 'down here' because my daughter in law's father has finally been properly diagnosed with bronch at Southampton by a fab woman. I don't know any hospitals in Surrey but you aren't far from the Brompton are you. There are several bronchs on here who know the consultants there. Otherwise google bronchiectasis specialist in your area and see what comes up. They are usually at big teaching hospitals. I hope you find one as it is v important.

[Claudine in reply to Hidden]

Mine is described as a respiratory specialist and something to do with cancer diagnosis. I like him and I usually see him privately - it's so much quicker. He will even phone me at home if necessary just to reassure me (invoice arrives very promptly!) He only does one day a week at the private clinic. It would be interesting to see a Bronch specialist but driving to Southampton fills me with dread. Same for the Brompton - I wouldn't have a clue how to get there without public transport which I wouldn't risk. Widowhood has made me rather a nervous wreck I'm afraid!

[Hidden in reply to Claudine]

Have a look at the Surrey hospitals to see if you can find one. The big problem is that general respiratory consultants tend not to know about bronch. I act as a patient for their exams and they are mostly trained in copd. Some go on to specialise in bronch. Your guy lovely as he is specialises in cancer you say. If you are happy as you are then carry on. If you feel that your treatment and management needs to be better look for an NHS expert. You don't have to pay for a bronch expert as most of them work only in the NHS. Good luck. I hope all goes well for you

[donut43]

Welcome to our group. sorry to hear of your problems. Good idea to look further into getting other ideas that may help you from other specialists. Good luck

Dan

[Maximonkey]

Hi Sooos, welcome, we all have differing problems on the site but we will always try to help. I have Bronchiectasis and asthma and after reading your blog I know that even though it took 2 years for a diagnosis, I am still lucky, as I have a wonderful consultant who is really knowledgeable about Bronchiectasis. I hope you find a great consultant too. Take care, Maximonkey

[Sooos in reply to Maximonkey]

Thank you...of all the possible outcomes I do think it is BE.... I’ve always said that it feels as though my infections never quite ‘go’ and that I seem to be full of gunk... all the time.

Now it’s time to pin the professionals down and get the correct treatment.

I’ve been reading through my medical notes and am shocked at how often A&E randomly mention COPD, and I now gather from here that it’s quite common for them to jump to that conclusion with no proof.

So onwards and upwards lol x

[Maximonkey in reply to Sooos]

Hi Sooos, I queried this point about COPD and Bronch being lumped together and the doctors reply was that all lung disease comes under the umbrella of COPD as the computer could not cope with each complaint separately. I was told not to be upset about it but to just insist that Bronchiectasis/Asthma are my complaints and that is what should be put down on their notes. Very frustrating, but there it is. Take care Maximonkey

[Carkaisabellacolin]

Hi there

I can really relate. As it took me many years to really realise just how bad my bronchectasis is. I finally went private and the lung specialist looked at my cd not the x rays. He pointed out to me how bad each lung is and how i should manage it. Before that it was infection after infection and i just put it down to my asthma but clearly it wasnt.

Its important to find out as whooping cough can leave you with some damage.

[Sooos in reply to Carkaisabellacolin]

Well 2 spiros and after the 28th, 2 CT scans so then I can start getting the correct diagnosis.

X

[Carkaisabellacolin]

Great dont give up until your happy. Great what your doing 😎

[Sooos in reply to Carkaisabellacolin]

Lol I’m not giving up on this..... The doctors have had long enough to sort this out... it’s so true that we know our own bodies ... now they will have to listen to me x

[Carkaisabellacolin]

Super!! All the best 👍👍💪😉

[Sooos in reply to Carkaisabellacolin]

Ty x

[Susan1200]

Welcome Sooos ,to this Wonderful group,I wish you all the best you stay strong 🐘your definitely a fighter.

Please let us know how your scan goes .

Susan 🐘

[Sooos in reply to Susan1200]

Hey Susan. Thank you and I will...

xx

[Hidden]

Hello, most docs tend to think everything is COPD. I'm a Bronchy Donkey too. Call it that because when I cough I sound like a donkey braying. Are you too far from Nottingham? I was cared for by a doctor at the Nottingham City Hospitalwho specialises in Cystic Fibrosis, so knows all about Bronch. All the best.

[Hidden in reply to Hidden]

I love bronchy donkey- that’s a new one and how I have been sounding since I caught a virus in May.