Hi again lovely lung people, just wanted to see if my situation sounds familiar to anyone, in a nutshell I have all the (horrendous) symptoms of Bronchiectasis, the medications, the persistent positive sputum samples (Strep Pneumoniae and Haemophilius Influenzae) I even tick the ‘had whooping cough has a child’ box....two specialists opinions that it was indeed Bronchiectasis, BUT then my CT scan only showed focal collapse (don’t get me wrong, you can imagine how truly relieved I was that there wasnt more significant damage) but I’m left in the dark now, and my specialist seems perplexed also (although hadn’t actually said that too my face) just cant answer any of my questions. I asked her if this could be the very beginnings of Bronchie? But her answer was basically ‘I don’t know’ (My situation is still exactly the same but without a positive CT scan) Is this very unusual or has anyone else had experience of this? Thank you in advance 😊
C.T scan confusion.....: Hi again... - Lung Conditions C...
C.T scan confusion.....
Some conditions do need a specialist consultant of which there maybe only a few in the country, you may need a trip to another hospital to see him/her. The rarer a condition is, the lesser the amount of consultants there are that specialise in it.
Morning CandiR, I have had a few CT scans that have not been consistent with expectations. It was second opinions on the scans that have revealed the problem. Sometimes things are not as clear on scans as we are led to believe. They are held up as the answer to every question but depend crucially on interpretation. Would you feel comfortable asking for a second opinion? My LLC (Lovely Lung Consultant) not only was happy to go down that route but had already got another radiologist in mind. And muttered about the possibility of "third or fourth opinions".
All the best
K
Wow that is helpful thank you Katinka46, I do feel that when I got the results it was a case of 'well that's it then, no bronchiectasis' and I'm left in the dark (on lots of medication probably for life) I will be embarrassed asking for a second opinion but I'm going to have too! Or ask my GP for a bronchiectasis specialist referral maybe, thank you again for your response 😊
Be persistent! ☺ Don't allow anybody to make you feel apologetic.
Thanks Robin77, I find it mortifyingly embarrasing! I know it shouldn't ,but it doesn't matter how nice I am, in my head I'm thinking 'oh lord, they think I'm telling them how be a doctor!' Cringe. But yes, I have no choice or I'm going to be fobbed off forever 😟
You need a specialist in bronchiectasis. Most general respiratory consultants and nearly all GPs know next to nothing about it. They are usually found at big teaching hospitals. Look on the internet for someone who specialises in bronch and then take the name to your GPand insist on a referral. Bronchiectasis comes about from damage caused by many different factors and it presents in many different ways. It is a complex condition, we are all different and everybody needs treatment specialised to them.Don’t let the ignorance of those you have encountered so far affect your future health. Good luck.
Thanks very much for your response Littlepom, I genuinely never thought of it like that, yes, I see a 'respiratory specialist' not a 'bronchiectasis specialist' its when they say "you may never get to the bottom it" that A) breaks my heart and B) reckon the real reason they won't/can't peruse my problems is because the NHS is at breaking point and they are wanting to discharge people back to the GP as quick as possible unfortunately. I'm as pro active as I can be regarding my illness but never thought of a bronchiectasis specialist, so thank you! I'll get searching 😊
After 64 years of dealing with doctors, so called specialists and other ‘medical practitioners’ I can tell you that the phrase ‘you may never get to the bottom of this’ comes more from their reluctance to admit that they do not have the expertise to help you than lack of facilities in the NHS. With the right doctor you will get the definitive diagnosis and most importantly, ongoning management, most of which is up to you. A diagnosis of bronchiectasis is not a death sentence. I have had very extensive bronch since the age of three. As I never had whooping cough the reason I had all of the pneumonias that led to it remains a mystery. I religiously empty my lungs every day, take exercise and watch out for other people’s viruses and my own exacerbations. I am also an expert at subtly bullying medics into getting the treatments and drugs that I need.
I had a normal upbringing and education, married, had two children. I have lived in many different parts of the world and recently walked (pacing myself) 3 miles down to Petra and back whilst on a four month world cruise.
Once you know what you are dealing with and the best way of managing it you will be in charge. Knowlege is power so keep pushing. Good luck
Just the thought of dealing with doctors for 64 years makes me feel exhausted on your behalf! 😪 I would have far more respect for a GP or specialist whom admitted they weren't familiar with this particular issue than saying 'we may never get to the bottom of it' think it's a polite way of saying "bye!"
Think I need to learn your subtle bullying tactics to get what I need, because think it's obvious my way is not getting me anywhere is it! 🙁
Roughly what area are you in Candi - someone may beable to point you in the right direction of a resp con who has a special interest in bronch.
Good luck
Cx
Hello again cofdrop and thank you for your response, I'm in North Yorkshire (York) and my respiratory specialist is in Harrogate hospital, to be honest I'd never even thought that actually yes, they are 'respiratory specialists' not 'bronchiectasis specialsts' are they.....I have been told twice now that "You may never get to the bottom of your ailments" which breaks my heart, I know the NHS is on its knees and they simply do not have the time/resources to investigate further, so yes, I'm being fobbed off most the time. I'm have learnt to be as pro active as possible so looks like I'll have to search for a bronchiectasis specialist myself and nag my GP for another referral (hard work as I'm sure you'll all be familiar with!) thanks you very much for your help 😊
Oh how I identify with that response: “You may never know what it is.” Especially from my grumpy GP. It is —- literally —- the cheap option, as referrals cost the GP practices money. It took four and a half years to get the diagnosis of Chronic Thromboembolic Disease, and another four years to get the Obliterative Bronchiolitis diagnosis. Both of which I had figured out years before. So pro-active is the way, I had to push and persist. I think I was always polite, clear, rational and as well-informed as I could be. I managed to not lose my cool, not to weep, or shout. But it was very hard. I hope it doesn’t take as long for you.
Onward and upward, brave heart.
K x
Sounds like you know exactly what I'm talking about AND more! And yes, unfortunately nowadays it is all about the cheapest option. How did you manage to get diagnosed in the end? (really hope you don't mind me asking) it all seems to be about the CT scan in my situation, so once that didn't show bronchiectasis damage (just collapse) then I'm left with an illness all the medications but no 'title' or further investigation (I am aware how lucky I am that it didn't show bad bronchiectasis damage by the way) just a very strange going on. Thanks again for your help 👍🙂
Candi the lovely Katinka, who I had the good fortune to meet the other week, sees the same group of consultants, not far away from you. As we are not allowed to mention doc’s names on the open site, I will contact you by pm. It won’t be straight away but I will get back to you.
Love cx
Wow that is luck! Thank you very much, really appreciated! 👍
If you don't mind me asking CandiR,how long did you wait until your results came though.
I hope you find a good specialist ,who will help you.
Best wishes
Susan .
Don't mind at all Susan1200, it took quite a while, think over two weeks, maybe three, don't know if that is normal. Even then I got a letter that didnt make much sense (I actually had to put it on here because I was so confused!) it said "no significant bronchiectasis evidence" so for a month plus I didn't know if that meant I had a bit or none! 😯 Anyway, hope your more successful 😊
Thank you so much CandiR for replying so soon ,i can understand why you did'nt understand the letter ,that really dose not make any sense at all.
I really hope and pray you can sort this matter out with another specialist .
Best wishes
Susan .
I am happy to tell you my story. I have written it up, now at about 12,000 words and still a year to go. So.... not for the faint hearted.
I will message you with a shortened version.
The breakthrough came when I was referred to the lovely trio that Cofdrop mentioned. Both my conditions are rare, and doctors don’t like rare diseases, (Zebras in doctor-speak, hence my Avatar and faithful friend who usually features in my cartoons) because they don’t want to look like over eager Junior doctors. When doctors kept telling me there was nothing wrong with my lungs expecting me to relieved I felt like a prime example of a fusspot and hypochondriac. But I knew there something wrong, and that it was serious. And was I right or was I right?
Hmmmm....
K xx
It has been similar with me as the consultants hit walls I have been tested for all sorts of things that I have never heard of before. Which meant they were looking for something in my eyes at least. One of the biggest hurdles I met was having multi conditions which meant my heart would be blamed by my lung doctors and GP's but the heart Doctors blamed my Lungs. It was only after they both got together they looked elsewhere. Which meant me going to Sheffield twice It has now confirmed PH and CTEPH on top of the other ailments.
Thank you for your response off cut and I can sympathise as that's happening to me (didn't mention that as I didn't want to confuse the issue) but yes, my respiratory specialist is passing me back to my immunologist/haematologist and they are passing me back to the respiratory specialist! I go to Leeds and Harrogate/York. Exhausting isn't it! Forgive me but not sure what your diagnosis initials stand for? 🙂
Offcut’s condition is Chronic Thromboembolic Pulmonary Hypertension. CTEPH. I have half of it but not PH.
Have you been referred to Papworth for Pulmonary Endarterectomy?
Would love to hear about it.
K x
Sorry. My reply was to Offcut, I will PM him or I will be censored for going off topic.
The part 'when doctors kept telling me there was nothing wrong expecting me to be relieved, I felt like a prime example of a fuss pot' I could have written that myself! (And so could 100s of others on this forum I expect!) Thank you for the offer to share your story with me, It will be interesting to see someone else's journey and battle, appreciate it! 🙂
You woz right! Xxx
My bronchiectasis was only properly diagnosed when I had a High Definition CT scan of my lungs. Not enough info on the ordinary one even with contrast. Is it worth asking for one of those?
Oh! I presumed all CT scans were high def!? This is news to me so thank you Jacmidlands 👍 I'll find out what I had. It was slightly odd that the letter I recieved before my CT scan made out it would be 'with contrast' so I fasted, then no mention once I got there, I was in and out in 20 mins!
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