Referral to london

[Kimmykib]

Hi guys quick question i know not many of you will know what sarcoidosis/cardiac sarcoidosis but i have seen my specialist recently and he has offered to refer me to see the national specialist at royal brampton hospital !! I am a little weary cos it means i am mainly under them an not my usual doctor and its so far away and i dont know what there like there anyone expericened this or been referred to london ???

[Ethel13]

Hi Kimmy

I can understand your anxiety at being referred to a hospital so far away and the need to get used to new health professionals.

Royal Brompton is the sister hospital to Harefield and they are recognised as some of if not the leading heart hospitals in the UK. I researched surgeons and hospitals for my imminent open heart surgery and chose a surgeon based at Harefield. They have a really good website and link for patient information.

Try and look at this as a positive move, you are being referred to a hospital that is at the top of the field.

Hope this reassures you.

All the best,

Dory 💕

[Kimmykib in reply to Ethel13]

Thank you sweetie that is very reassuring and very helpful i do think positively everyday am a very mindful person but do work better with knowledge so have peoples experiences and knowledge makes me even more positively 😁😁😁

And wishing you the best of luck on your up coming op will have my fingers and toes crossed for you xx

[Ethel13 in reply to Kimmykib]

Thank you Kimmy x❤️💕❣️

[Spatz76]

Hi Kimmykib

I'm in a similar situation in that my cardiologist/electrophysiologist has offered/wants to refer me to London to see a top electrophysiologist as I'm a bit of an odd case and we need another opinion on how to treat my condition. I'm not sure what happens once I'm referred as I live in Yorkshire and London is a bit far to be to-ing and fro-ing from. Although I do want to do the right thing for me and go and get a second opinion. I've got another appointment with my cardiologist next week so am planning to find out the logistics of it.

Funnily enough when I first started getting heart symptoms they thought it might be sarcoidosis. I'd never heard of it before but they tested me for it i.e. pet CT scan and biopsy etc. It wasn't in the end but we must present similar symptoms.

Good luck with your referral, I hope you get all the answers you need.

Spatz76 x

[Kimmykib in reply to Spatz76]

Well am in the same situation i live in west yorkshire myself so london is a daunting task 😁😁

And i was being tested for cancer first and it took 14 month to get to the conclusion that it wasnt lymphoma and turned out to be sarcoidosis and peutz jeghers syndrome which are both and then it became cardiac sarcoidosis and i am lucky my specialist did the appropriate test ie pet scan mri heart monitor cos i have been checked before with my heart and my gp tried to say it was just and eptopic heart beat so am lucky really

I think i am gunna go to london even if its just for the initial appointment to see what they have to say cos am also like you a very complicated case and still lol

X

[Spatz76 in reply to Kimmykib]

Wow you have been through a lot! It seems like a never ending roller coaster at times doesn't it.

Perhaps we should put on a mini bus to London 😁😉

x

[Kimmykib in reply to Spatz76]

Lol very true hun i dont think there arent many tests i havent done lol i am even considering writing my own book lmao

And it sounds like a plan to me we could make a day of do some sight seeing and all be guinea pigs 🤣🤣🤣

[Charlie0007]

Hi

I am awaiting a triple heart bypass at the Brompton, i live in Basingstoke in Hampshire so am a lot closer but its still a bit of a journey, many people have said to m why no go to Southampton. Well the Brompton is as has been said possibly the best heart hospital in the Uk. i had my pre-op there on Monday just gone and fou d the people there, especially the cardiac nurse an absolute treasure, she was so helpful, went out of her way to sort any problems and answer any questions, she really put our mind's at ease. still to come all the way from yorkshire is a long journeythey do have on site accommodation, which you can find on their website, its farly basic but it does mena you can give yourself a break and family can stay near by.

i hope this help, good luck and God bless

Charlie

[Kimmykib in reply to Charlie0007]

Awww thank you charlie 😁😁😁 that helps i love everyone on here its be so humbling and touching how helpful and caring people are which helps you heal xx and am so glad to hear that the staff are nice cos we have had a few issues were am from but i am under 4 different hospitals lol and so many different specialists

And i am seeing the cardiac team and the sarcoidosis specialists when i go so its to see more then one i think but dont know the full plan as yet but will keep everyone posted

And good luck u will be in my prayers and thoughts before and after your op charlie wishing all the luck in the world i know you will be fine your in good hands by the sounds of things 😁😁😁

Thank you 😗

[WeezeMcCheese]

I'm from Leeds but have lived in London for a long time - I've never been referred to a different hospital far away but I can understand your apprehension. I don't understand your diagnosis but I do know that some of the best heart specialists are here in London so you're in good hands! I hope you don't find this condescending in any way as it's not meant as so, but I can help you figure out your journey if you like. I absolutely would not recommend attempting to drive into central London (you'll be stuck in traffic for years) but there are nice and easy routes via public transport, either getting the train into Kings Cross and the Picadilly line down straight to South Kensington, or parking up in High Barnet and getting the tube into London. Good luck!

[Kimmykib in reply to WeezeMcCheese]

Awww thanks weeze and i dont find that condecending at all i take on board any and all information and its nice to have knowledge from someone who knows london well cos i have only been twice before and not for the hospital and we thought train or even seeing if we can get hospital transport but that is a long shot lol

I shall keep you posted as too how we can organise getting down there and be in touch thank you so much 😁😁😁

[WeezeMcCheese in reply to Kimmykib]

If you can get hospital transport that would be great, didn't realise that might have been an option! Do keep me posted, and let me know if I can help any further. Oh, if you do take the train and tube route, you no longer need a special travel card for the tube, you can just tap in and out with your contactless debit/credit card which helps speed things along enormously. There's a price cap of £6.60 for that part of London so if you decide to make a day of it and go see some central London sights while you're here, your contactless spend shouldn't go above £6.60 for the day.

[Kimmykib in reply to WeezeMcCheese]

Thank you hun its handy to know and i will let u know if hospital transport is viable its a long shot but worth a try i have been told that they even go to glascow so fingers crossed xxx

[stevejb1810]

Hi

Google is a wonderful thing - I had to use it to find out what cardiac sarcoidosis is. In doing so I found this sarcoidosisuk.org/informati...

As I understand things sarcoidosis is rare and, that being the case, you are not going to have many experts around in the UK. If it were me, I'd be champing at the bit to get myself in front of the acknowledged expert but I appreciate that I'm not you and it might be less than convenient for you. You have to make the call.

Good luck

Steve