Appointment with Brompton hospital london

[FrankiePugg]

Hi, I have an video appointment on Monday with Brompton. Are they good? Are the consultants highly trained? Thank you

[fionac66]

Yes - the Brompton is one of 4 specialist centres. You will be in good hands.

[FrankiePugg in reply to fionac66]

Thank you. It is. Video appointment. Let’s hope, we will get there…🙂

[fionac66 in reply to FrankiePugg]

Good luck!

[FrankiePugg in reply to fionac66]

Thank you. I will update you….thank you for your time and kindness

[fionac66 in reply to FrankiePugg]

You are very welcome

[mullsand]

Yes you’re in good hands you’ll probably talk to a specialist PCD consultant, physio, possibly ENT & a specialist nurse it’s one of 4 specialist centres in UK

[FrankiePugg in reply to mullsand]

Thank you so much, I am tired of this and very nervous. I appreciate your time and support 🙏🙂

[mullsand]

Happy to chat My daughter has Kartageners Syndrome (Primary Ciliary Dyskinesia with Heterotaxy aka Situs Inversus) it’s pretty rare and many, even in the medical field, have heard of it but Brompton are very good They have now discovered about 40 genes which can cause PCD & think there are more yet to be discovered so depending on where the gene anomaly is will determine how PCD affects you -many are very mild and people don’t ever know they have it & will just feel like they have a cold a lot of the time others like my daughters affects many other organs but if that was the case for you you would likely already know you have it - good luck, if you have any questions feel free to ask

[FrankiePugg in reply to mullsand]

Your daughter is blessed to have you, and you her🙂. Your daughter is very brave and it’s good to hear she is doing well. Will she always to able to live a normal life?

your advice is helping me to feel, it will be ok. This has been going on since 2000, no one to date, know what it is. With it happening so frequently, therefore I will be starting the Azithromycin 3 times a week from tomorrow. I am in my bed for 3 layers of clothes and a think scarf, the chest, since yesterday, once again has become deeply cold. Because, I’m going to get the medication tomorrow, hope it prevents it going all the way into a chest infection etc…last year November it was awful. I just want to live a normal quality of life. Sorry to go on….

[mahesh77 in reply to FrankiePugg]

Hi Frankie, sorry to hear about your current condition. I myself am a PCD patient with Royal Brompton for almost 20 years. I had kept reasonably healthy in my 30s, but last few years in my 40's has been tough. For the best part of 3-4 years had constant chest infections and had a bug called Klebsiella, I struggled to get out of bed or do anything. I required IV once or twice a year but it was only surpressing the infection and not clearing it. Royal Brompton then put me on Azitromycin 3 times a week with Colomycin nebulised, and after a few months I felt better, and with daily physio I'm keeping myself clear. I've not had IV since August 2019. So I hope the Azithromycin will give you the benefit you are seeking. You are in good hands.

[mullsand]

How old are you? Yes hopefully she’ll live a relatively normal life she has to take done precautions-additional immunisations, chest physio etc, Niámh’s been unfortunate she had some trouble with her bowel & spent 5 months in hospital last year but as I said her condition is more complex - they’ll need to test to see if it is PCD & if so what strand that will determine how, it at all, your immunity & other organs are affected. Niámh feel the cold a lot but that’s probably due to her heart condition (she has Left Atrial isomerism so is bradycardic) write down a list of questions you want to ask tomorrow- they’ll be happy to answer them for you as fully as they can

[FrankiePugg in reply to mullsand]

Ahh… bless her. May god keep her well and healthy always 🙏🙏she has gone through so much. Gosh, you have been through so much….hope, you are ok in your health

[Chrissie82]

Sorry if my comment is a bit late but I agree with the others, all the staff are lovely, las time i had my video appt I spoke to the PCD consultant, ENT and physio and with their help and advice i am feeling so much better .