Reintroducing myself: Hi all, I’m... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Reintroducing myself

jessielou
jessielou

Hi all,

I’m Sheena, I’ve been a member of this forum since it’s early days and was for a few years an administrator, unfortunately due to health issues, a crazy life (running a pub). and losing both my parents in the last 18 months, I had to take a step back.

Expecting to be looking after my parents and now that’s sadly not the case, I feel I have need of and can offer support to all those affected by Hughes Syndrome. I cannot claim to be an expert and therefore, cannot give medical advice, but I do know how Hughes has affected my health, my life, my family, it’s a heck of a rollercoaster ride. 😁😁

I’m now 54 years old, married to Alan my soulmate, my 3 miracle kids and stepson (the child of my heart). Life’s gone on since my original profile was written, my eldest daughter has given me a beautiful granddaughter, who was born after a difficult pregnancy, delivery and the first few days was a very poorly little girl, she came along 3 days after my dad died and has been my reason to smile, definitely a touch of souls as dad went, cos I see his mischievous twinkle in her eyes, the next 2 are at university, very proud mum!! and the youngest son now 18 (has Autism) he’s amazing and still in full time education.

I now have 5 dogs, having inherited my parents 2, so it’s a madhouse!!

Health wise I have Hughes Syndrome, Lupus, fibromyalgia, hypothyroidism, asthma, high cholesterol, low vit D and allergies as well as being tested for more, keep telling the specialist “nope!!!! not having anymore 😀😀😀!!!

I’ve had clots in my legs DVTs, lungs PEs, TIAs, miscarriages and a stroke in 2012. I’m lupus anticoagulant positive APS and have been diagnosed since 2010 after seeing Professor Hughes on breakfast TV talking about Hughes Syndrome and begging my Gp to test me, unsurprisingly it was positive, being pushy and determined to get answers with support from others on here was and has been invaluable.

I inject myself with a treatment dose of enoxaparin (heparin) every day, I’m not a candidate for the new anticoagulants as I’ve had arterial clots and my inr (if on warfarin would need to be 3-4). My inr was very unstable on warfarin so it was felt heparin injections would be the safer option. I also take a variety of other medication to treat all the above. Yep, I rattle, shake and roll sometimes too 😂😂😂

Take care all, big gentle hugs xxx 😀😀😀😀😀

10 Replies
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MaryF
MaryFAdministrator

Nice to see you popping on here, please enjoy using the forum again, and thanks for asking after us all when I saw you in London recently. MaryF

HollyHeski
HollyHeskiAdministrator

Hi, welcome back. Im sure your experiences will be appreciated by all on here.

Welcome -what a great person from days gone by- You and the Suz were my first replies when i entered the forum . . Glad to see you back after your absence , Sorry for what you had to go thru . You were always there for me and for that i am very grateful. So WELCOME BACK as i am sure you have so much to offer .Not many of us left on here from those days.But some new and valuable people here now to blend with .I guess i need to pick up that phone and talk to you again miss the talks. WELL from one old timer on here to another . Hugs my friend Glad your back !! Casey and I

Welcome back and welcome again. Are you in the U.K.? You said you only inject once per day but yet you have had a an arterial clot. My doc has me inject every twelve hours due to an arterial clot. I am curious to your dose every twelve hours, is it based on your weight and how? TYIA, Cindy

Hi Cindy,

I inject once a day, my dosage is calculated on body weight, so at the moment I’m on 120 mg clexane, I’m told by my haematologist that this is sufficient and has a 12 hour going up and 12 hour coming back down, when I do have issues, if they suspect clots or when I had pneumonia last year they split and increase the dosage. I hope this helps,

Take care gentle hugs Sheena 🙂🙂

Very pleased you're back Sheena. So very sad to hear about your Mum and Dad. As Jet says you have given a lot of support and we go back a few years now. Try & keep as well as possible xxx

Hello from West Virginia!

Great to see you on here again! Sorry to hear all you've gone through. You definitely have a busy life from the sounds of it with just the furry friends!

I too have bad cholesterol and take two tablespoons of cod liver lemon flavored fish oil each day. I failed on warfarin and take fragmen shots daily. Sad thing is I'm now starting to lose my balance again everyday, muddle words, really having much confusion and bad memory issues. Two days ago I left the gas burner going on low when I made breakfast .

Glad to hear from you, take care.

Well Buddy i am back on the Enox again because my INR crashed hard so i am on it till it recovers to mid range , about 3.0 -- belly bruises galore ha ha - hows things ??

Welcome back from me also!

I am not sure, but I think I remember your name. I have absolutely head about it.

I must have been here for at least 6 years so what year do we speak of when you left. I live in Stockholm (Sweden) and was also an Adminstrator till the beginning of this year, when decided to devote my time to my old art ..... oilpaintings. Could not see properly earlier as to TIAs but Warfarin saved my life. Said to say but pencils do not dance anymore so I am still here from time to time. Hope you reamain here now as we need devoted and kind people we can trust.

Kerstin

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