Hi everyone, at last I have an appointment (Monday) at the Royal Brompton Hospital to see a consultant in regard to my bronchiectasis diagnosis in Spring of 2024. Up until now I have only had the knowledgeable people on this forum to assist me with management and medication etc. I gather many of you with this condition have a specialist consultant to help them so I am really hoping to find some professional support.
However, I have no idea what to expect from my appointment, which will involve early peak time rail travel to London, or how I should prepare for it, although I have jotted down a few concerns. If you have any experience of this to share, I’d be glad to hear from you, thanks.
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I can’t help, sorry. I haven’t seen a bronchiectstasis specialist, despite being diagnosed in 2012. The only information I’ve been given was by the asthma nurse at my drs surgery.
You really need a bronch specialist. Look for one on the website of your nearest large teaching hospital. Take the name to your GP and insist on a referral. GPs and nurses know nothing about it. As time goes on you will need the specialist's expertise to manage exacerbations and to give you a self management programme. In not referring you earlier to a specialist you have been at risk pf your lungs suffering more damage and the duty of care towards you has been neglectef.
Hi and welcome to the bronch club. There are members on here who attend the Brompton so hopefully they will tell you of their experience. I am with the QE in Bham for forty odd years with 2 fantastic bronch specialists in all that time. Each hospital has its own routines but there are some basics which they will probably follow. You will probably need to give a sputum sample so that they can see what colour it is and tell what is growing in there. They may do spirometry tests, xray or ct scan although these are probably arranged at seperate appointments. The doc will ask you how much you are coughing up. They will then decide on your management programme, which abs you would have for an exacerbation etc. Ask them to write to your GP to give you an emergency pack of the abs that they decide on as you will need to take them as soon as you feel an exacerbation coming on. Not all GPs like to give emergency packs unless the consultant tells them. Also GPs know very little about bronch and actually appreciate the help. I don't go to my GP if the bronch is playing up but phone my consultant's secretary. They are usually very nice and will get answers for ypu.They have their own physiotherapists who will teach you breathing tecniques and how to get the mucus out of your lungs every day to deprive the bacteria of the warm wet atmosphere that they.like to grow in. This self management is the most important thing that you can do for yourself.
I hope that helped a bit. Do come back if you need any more support. Therr is a lot to take on board at first but it does just become routine.
Thanks Swizzy, very helpful as always. The only thing the local consultant who did the diagnosis gave me was an emergency AB pack, which I have already needed once. The GPs prescribed me ana Salamol inhaler, which I don’t notice any benefit from using. The daily useful meds, carbocystine and mucoclear, I got my GP to prescribe after getting advice from people here. But I still have difficulty with lung clearance and inflammation etc. I’m hoping the session at Royal Brompton will be fairly thorough and will better equip me for self management. Cheers S
Good luck in getting just what you need. The Brompton is highly regarded by a lot of people on this site, which sounds very hopeful. You've just mentioned 3 of your concerns . That's the sort of thing to tell the consultant. xxx
Yes, I have a small list of issues to mention, but at least, thanks to this group, I’m going in with a reasonable amount of knowledge about my condition, which I confess I hadn’t even heard of when I was diagnosed.
When I first went, nearly 30 years ago now, I saw a Host Defence consultant on the first day & was booked in for a range of tests a few weeks later. But as you’ve got a very early appointment I’m wondering if they’ll do the tests on the same day. That’d be great!
I had blood tests, sputum (3 in total, I think), CT, lung function, nasal swabs, a sweat test (to exclude cystic fibrosis), a walk test, and saw a physiotherapist who taught me how to do lung clearance. Most of this is done on the Day Unit in Fulham Rd, but for lung function you go to a different floor & for the CT scan to the Sydney St building. I think I had some allergy tests too (that unit is also in Fulham Rd).
Then at the very end of the day I had a meeting with the consultant to review the results & confirm his diagnosis, and for him to explain “the plan” to keep me as well as possible. It was very thorough and I felt confident I’d be well looked after. I was exhausted afterwards!
Everyone there is lovely. In bronchiectasis, lung clearance is regarded as absolutely essential & you get a lot of support from physiotherapists to learn the technique they think will be best for you. The physios are an important part of the team & support is ongoing - if you’re finding clearance difficult you can arrange a telephone or video appointment to chat to them. They have numerous gadgets to help you clear your lungs effectively. Eg when I developed EDAC (a form of tracheobronchomalacia) they gave me a special mask to prevent my main airway from collapsing when I cough. This has been enormously beneficial.
I hope this is helpful but if you want to ask anything feel free to pm me. And good luck for Monday! 🥰
Hi Janedivney, thanks so much for your response, it’s very reassuring and just what I was hoping to hear. My appointment is also with the Host Defence Team, so I’m guessing it’s probably just a preliminary and I’ll probably have to return for tests etc. But if they did it all on the day it would be great. I’ll go prepared with packed lunch just in case. Wonderful to hear that they were so thorough and checked your diagnosis, including CT scan. And I know I need help with lung clearance as everyone hear makes it sound easy. And to go away with a plan of management in place, Oh joy! High expectations now and I’m glad I pushed for this referral, S
I don’t have that condition, but I am under the care of the Lung and the Heart specialists at the Royal Brompton. Both teams are excellent and I feel well looked after. All the staff are kind, caring and supportive. Good luck.
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