APS specialist in Hull?

[judes]

Hi all

Don't post often but do read all the posts, people a lot more knowledgable than I am!

After being seriously ill earlier this year, and spending 10 days in ITU, nothing to do with Hughes, had an op that was supposed to be 2 hours and turned into 6. This resulted in peunomia and on a ventilater for a while.

After all that it made me reevaluate my life big time. So am moving from the south coast near Brighton up to Hull, don't know anyone so will be an adventure.

I have had brilliant care here, backed up by St Thomas. So does anyone know of a specialist in Hull? I would like to stop going to London.

I am speaking to my GP next week to swap from Warfarin to Fragmin during the move, a lot less hassle til I get a new GP sorted.

Thanks

Jude

[MaryF Administrator]

Hi there, you have been in the wars! I hope you feel better soon, I really suggest you keep a foot in the door of St Thomas' even if you go less often! Meanwhile get your new GP when you arrive in Hull to refer to one near to your off our list. I would not let got of St Thomas until you are fully satisfied, and even then you could opt for not completely doing so. Are list of recommended specialists is on the charity web site, or to the right as a pinned post, underneath the latest poll, if you open that out. MaryF

[judes in reply to MaryF]

Thanks Mary I am just about back to normal whatever that may be! Thankfully I have little memory of it all what did surprise me was the flash backs and nightmares I had afterwards.

I do take on board your thoughts on St Thomas, I will have to train a new GP hopefully they will be more knowledgable than when I was first diagnosed 20 years ago. Where does time go?

Jude

[MaryF Administrator in reply to judes]

Once you have met them and asked for a referral off our charity website: hughes-syndrome.org/self-he... I then suggest you write a short letter to them via email, (secretary's address), marked for their attention, and enclose the whole charity website, as well as the link to the specialists. This does usually help. MaryF

[SueLovett]

Hi A friend of mine saw Dr Michael Green at York District. I understand he Was quite good.

I used to live in East Yorkshire and would recommend that you still keep going to a London Hospital as long as you can. I now go to Guys since Louise Coote Unit moved there. Not nearly as good but at least I'm being seen by a charming doctor.

Hope this helps

[Fra22-57]

Hi there Jude's..I understand there is one off that list at Castle Hill hospital, Hull

[judes in reply to Fra22-57]

Thanks Hon

When I looked through the list it had only half registered. I will have to look into it and add to the list of things to do that appears to be getting longer every day.

Jude's