Royal Free consultation – result

[volvox45]

In case anyone's interested, I spent 3 hours at the RF having my heart and lungs checked very thoroughly, and then a general chat with a consultant – who didn't introduce himself, which doesn't seem like very good practice! Heart and lungs fine for my age in spite of the bronchiectasis and recent pneumonia.

I failed completely to ask all my questions – I'd had enough by the end of the day and just wanted to go home! Feeble excuse I know. He was interested that I'd been diagnosed with acid reflux "backwards" –I have bronchiectasis therefore I must have reflux, but said right-sided bronchiectasis is usually down to aspiration, and that's why the conclusion was reached. He did say that it's probably a good thing to take omeprazole as a preventative in any case, to stop my lungs getting worse, even though I don't have reflux. Just in case. He fully sympathised with my inability to face a manometry procedure.

He checked my Reynaud's but didn't suggest medication, which is fine by me. To my surprise, he didn't ask after gut issues, which is actually my biggest problem – unpredictable diarrhoea and poor absorption. I forgot to tell him that the most help I've had recently is from a dietician (my idea) who has helped me get back up to a sensible BMI.

So that's that for another year!

[Buttsy]

Hi,

Good morning, I was interested to know how you went on at your appointment.when you say he checked your Raynauds, what did he do,How did he check it ?

I have my first appointment in February next year, I only got my appointment digitally yesterday.I am wondering what they will do while I am there, did they tell you beforehand that you were going to get tests done?

I am under the Rheumatologist at my local hospital,but haven’t had a definite diagnosis yet, so hoping an appointment at the Royal Free might help.

I like you seem to have a lot of stomach , digestive issues and also have gynaecology issues.

Sorry for the questions, hope you don’t mind.

[volvox45 in reply to Buttsy]

I love questions, don't worry! To "check" my Reynaud's he just asked how was it! – and looked briefly to see if I have any ulcers. That was it. But when I had my initial RF appointment in 2020 I had a "nail-fold capillary" test which was fascinating – a microscope enables a lovely doctor (and you) to examine how blood corpuscles make their way round the U-turns of the capillaries at the nail edge – you could clearly see the SSc damage in my case. Also back then I had a gas test for SIBO (small intestine bacterial overgrowth) which also came back positive, so that's what causes my gastro problems. So you could expect that, plus specific blood tests, cardiac check, lung function tests, detailed consultation and examination etc. Enjoy your day! And do take written questions even if you don't ask them all (like I didn't – don't follow my example!).

[Buttsy in reply to volvox45]

Will they tell me before I go what test I will have done ?

Thank you

[volvox45 in reply to Buttsy]

Since each test is in a different place you will get letters telling you where to be at what time, eg echocardiogram ground floor say 2.30; lung function test 2nd floor say half an hour later; consultation and bloods in rheumatology dept 1st floor etc. At least that's my experience. After the talk they may decide to send you for other tests another time, eg for SIBO and nail-fold. Depends on the type of SSc you have. For instance, I don't have gynae problems so didn't go down that route. Each technician/doctor explains exactly what to do when you're there, they're very kind, so don't worry.

[Buttsy in reply to volvox45]

Thank you so much 🙂have a good day

[amc282]

Glad you got through it relatively unscathed! The aspiration thing interests me as I suffer from issues right sided as well. digestive issues are also a big thing for me. I must work on my menopausal weight gain, for certain.

[Castella]

Well done! I had SIBO diagnosed at the RF from a poke in the abdomen, then an antibiotic was prescribed but it didn't help. For lower GI problems they don't always ask, but can refer on to the gastroenterologist Dr Charles Murray.

[Bkart]

Hi volvo45, it’s so annoying when Consultants don’t introduce themselves, last year I saw a dermatologist who during her barely three minute examination never spoke to me once and a Rheumatologist who kept addressing me by the wrong name which made me question who’s notes he was actually looking at, particularly when I received the report! Due to swallowing difficulties I had a gastroscopy two years ago and was very surprised that amongst other problems I had reflux, like you I denied it but turns out it was ‘silent’ reflux which as you say is the main cause of aspiration which in turn can lead to lung problems. Sad to say the aspiration got worse so I had to start taking OMEPRAZOLE which has really helped, initially on 20mg twice a day but for the most part by watching my diet I now manage on 20mg daily taken during the evening. I can very often taste the acid in my mouth when I first wake in the mornings but definitely have no pain or heartburn with ‘silent ‘ reflux. Unfortunately though my tummy gastric problems are getting worse and now wonder if I have Sibo symptoms but that’s another hurdle for another day, like you I can’t at this time face another gastroscopy but know I will have to soon! Wishing you all the best.