Lupie living in the Highlands!: Hi All, My name is... - LUPUS UK

LUPUS UK
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Lupie living in the Highlands!

talj
talj

Hi All,

My name is Natalya and I live in the Highlands of Scotland. I've been diagnosed with Lupus, Hughes, Sjogrens and Chronic Pain Syndrome for 10 years now and currently receiving treatment for all of them.

My post has 2 parts really. Firstly, I was wondering if there is anyone else in this group that may be local (ish) to the Torridon/Lochcarron area of Ross-shire? Bit of a long shot but thought it was worth a try! Local to Inverness would be good too.

Secondly, my fiancé and I are getting married in May 2019 and we plan on trying for a baby next summer. I currently travel to Edinburgh to see someone who specialises in Lupus, however there is no Obstetrician that I can find anywhere in Scotland that specialises in Hughes or Lupus. I was wondering if anyone else from Scotland has any tips on the best places to go? I will have to be seen in a high risk clinic and I know that towards the end of the pregnancy that will mean regular visits to the hospital so I am reluctant to have to travel too far. Do you think going to Edinburgh high risk clinic would be the best thing to do seeing as I am seen there for my Lupus?

Sorry for all the questions but hopefully someone might have an answer or two for me!

Many thanks

Natalya :)

8 Replies
oldestnewest

Welcome Natalya and congratulations!!! 🍾🥂

There is a maternity hospital that serves the Highlands and Islands in Aberdeen. Your Obstetrician will lead a multi-disciplinary team including your lupus specialist, as Scotland's too wee for highly specialised sub-specialists.

It might be you'll be an in-patient a little earlier? They'll prefer you being as close to home as possible, so significant others can visit easily.

My one-day old nephew had a three-hundred mile flight in an air ambulance (with his mum!) as a precaution against infection - he tore out his antibiotic line and was fine, and went home the next day 😊 - so transport arrangements for remote areas are excellent.

Here's to a very wonderful family life, keep posting! xxx

talj
talj
in reply to eekt

Thank you so much for your reply, I had no idea there was a maternity hospital in Aberdeen! I see my Rheumatologist on the 31st October in Edinburgh and had a big list of questions for her so I will definitely ask about Aberdeen. I think you could be right regarding in-patient earlier than most. From what I can understand my biggest problem (after miscarriage) could be pre-eclampsia so I guess they would want me in-patient if that occurs?

Thank you for the congratulations too! We are in the throws of organising at present, which is quite something! I had no idea it could be so stressful!

I'll definitely keep you all posted on things! xxx

eekt
eekt
in reply to talj

I think your GP will be able to give 'pre-conception' (!) advice and initiate planning for the team.

My nephew had the most beautiful Highland wedding - in two locations, 60 miles apart! - and everyone just lent a hand with everything from hand-made invites to very personal photos and of course cake. It's YOUR day, be spoilt!

Looking forward to hearing how things go! There's nothing like a wedding! 🤗😁😚 xxx

Hi Natalya.

I can't offer any Scottish advice I'm afraid, but I just wanted to congratulate you on your upcoming wedding and future family.

I'm so sorry to read all your conditions, and how exhausting it must be dealing with it all on a daily basis. You are absolutely doing the right thing by asking advice on this forum as there are so many amazing knowledgable and supportive people here.

As eekt said, keep sending us updates.

Sending healthy vibes and hugs xx

talj
talj
in reply to ange726

Thank you so much for the congratulations, I'm so glad I found this forum, I am sure I will have lots to ask in the future! I am about to go on Azathioprine so look out for questions about that lol xx

Are you aware of the Hughes syndrome/"sticky blood" forum, here on health unlocked? Also their website:

ghic.world

talj
talj
in reply to baba

thank you! No, I didn’t know about the forum, will definitely join and post there too, thanks again! 😊

Paul_Howard
Paul_HowardAdministrator

Hi talj,

There is a feature on this site called 'people near me' which you can find by clicking on the picture of your avatar at the top right of your screen. This allows you to see any other members of the forum who have opted-in near to you. Unfortunately we don't have an active support group around your area at the moment.

Congratulations on getting engaged! We have a booklet about lupus and pregnancy which may be of interest to you if you haven't seen it yet - lupusuk.org.uk/wp-content/u...

Have you tried contacting our Lupus Support Groups in Scotland to see if they can recommend any good obstetricians? If you would like some contact details, please let me know and I will be happy to send them to you privately.

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