Sticky Blood-Hughes Syndrome Support
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It has been 20 years this year - feeling sorry for myself!

It was 20 years ago that I was first diagnosed as having APS -

I was 24 and having the time of my life...I'd worked really hard, acheived my ambition and decided it was time to relax a bit and have fun/travel the world etc etc. I had just come back from my first ever trip overseas to Los Angeles when I got ill (PE? diagnosed as pneumonia)

I now test negative - and it could have been a mis-diagnosis - and in general I put it to the back of my mind and live with it - but it has hung over me for all that time - worrying about every sore leg/pain in the chest - is this the big PE that kills me? Having to make the judgement whether to go to the GP/A&E - is it serious? or did I just sleep in a funny position ?....

When I realised it was so long I felt really upset (and still am a bit) first I couldn't understand why - it feels like I am grieving - then it hit me - I have lost something - the pre-diagnosis carefree days...

That's why this is so bad - not enough is known about it - in general you have a normal life - you don't grow up getting used to the idea - yet at still a relatively young age bang every thing no longer

feel safe - your body could kill you

I know I am feeling sorry for myself - tomorrow I will move on and it could be so much worse -

I know my partner doesn't get it at all - but thinking maybe you guys might....

15 Replies

Hi doll

it's 28 years for me in March and I know what you are feeling It was a huge loss to me and my family I have just collected so many new illnesses over the years the only was I cope is not looking back or forward just day by day thinking of you sweetie keep strong x


I think realising life is so fragile comes as quite a shock.

I hear you on wondering about each pain and whether to go to the doc or ER. Sometimes the pain can be so intense and frightening that it can be a difficult call. And its so frustrating when you do decide to go and they can't find a reason for it.

It is hard living with that uncertainty.

I find it does help talking to others with apls and knowing that others are having the same issues and frustrations and that I'm not a hypochondriac and not imagining it ...and at least someone else understands. This is why support groups like this are so valuable.


Oh Tassie this is so true! Its frightening when drs say theres nothing wrong but you know there is!! And im sure some people think i'm putting it on, they just don't understand. This group has already helped me so much.


I was diagnosed in approx 1980s by Prof Cranston whilst living in London and I just got on with things, not realising how serious it is, then I had a stillbirth, and then had to take Heparin for having my daughter and then had another stillbirth. However, my mother was diagnosed with it aftersuffering a stroke which was quite a shock, but I still plodded on and then I had my spleen taken out last year and it seems that from here, my problems have started and its problem after problem. Prior to this I just took Aspirin, and then in hospital I was told to stop and have Clexane injection, but still endured the mini TIA a month later, despite me telling the local doctors about how worried I was. I was put on Warfarin and here the problems have started, twice weekly tests, roller coaster INRS etc etc dizziness (more so now on Warfarin).

I just want to now control this thing and like some of the comments its brilliant having a site like this, because you know that other people are having the same problems. Prior to this site, I just did not know about the complications, funny turns if INR is too low etc. Thank goodness there is a site like this.


Hello, the passage of time can be a bit of a shock when you look back and notice, I hope the support on here can keep you feeling up and a bit in charge of it x M


very well put mary- my belovered dc mccall would always say to me -[jet you come and see me and you are always so upbeat and full of hell] you know at 1 st we ask why - then we have to say ok what am i going to do? i decided to learn - read books as confusing as it was - then i found this site and its many people going thru what i was,major boost to my outlook. would talk to dc m about this, her reply [god bless her where ever she is ?] quote-[ jet dont ever lose that fight in you , that drive you have , and mostly that ability to laugh in these times in your life as it has and always serve you well.] them words ment alot to me and every once in awhile i need that boot in the butt. but i think back to her smiling face and her words to me and its all it takes. i could make her laugh even in her worst bad days , or so she claimed. but i believe it to be true. i had the pleasure of seeing her on last time , in all places -the blood lab.she was real down- a little lunch together an we laughted and cryed- but she walked away smiling - we gotta keep that ability no matter how hard to just be able to do this ------------------ your friend -----jet


oops spaced out one thing dc m would say of being able to laugh- she would say laughter is good medicne- so during our lunch. i quoted her- this brough out the 1 st laugh and smile. it was worth a million. to me and also her- ------------- jet sorry for the brain cramp!!!!!!!!!!!!!


Becoming an "expert patient" is certainly a key in getting the best possible treatment that you can. Its hard work but sometimes the only way.

Thinking of everyone and wishing them well x


ahem cough and the occasional expedition into cyber space with the written word! x


Cough Splutter...ok well perhaps we all can't manage that but no excuse for you with that sharp wit!! xx


Thank you all - it really does help to feel supported

I am having a better day today - probably because I have been rushed off my time to dwell

I think the uncertainty is what gets to me most ... (and my history is a mess - lots of unconfirmed dvts and things like the misdiagnosed PE)

I did have a massive DVT (from my calf to inferior vena cava - almost 3 ft long! completely blocked main vein - was still partially blocked 4 years later)

I had ignored my slightly swollen leg and pain on walking for a couple of days because by that stage I was convinced I was a hypochrondriac...I know now sometimes you need to create a know when something is wrong!

(having said that I am waiting to see a gastroentrology consultant to find out what caused a mystery pain in Sept that I still get 'twinges' from now...)

I am very lucky to be alive and that my blood return is now almost normal - I don't limp anymore and don't have to wear a surgical stocking (it was so bad I had a disabled badge for a few years -but I was also lucky I was so young it has recovered)

I am also very lucky that I have two beautiful daughters (and I was diagnosed before I was pregnant so I got the right care throughout - although for my second daughter I had to fight for it - because of my negative tests- my OB consultant got a haemotologist to talk to me 'to put my mind at rest' - I walked out of there with the number of scans I wanted and a surprised consultant.) I think the pregnancy/still birth problems are the ones I find the most heart breaking.

I thinkmy APS has 'gone away' for now - but then I do worry about something triggering it off again...but then again I could fall downstairs tomorrow...

Thanks again ...I just hope that one day APS will be fully understood and if a cure isn't possible at least better treatment and wish everyone well until that day!


Hello Lucky67

your story seems alot like mine i was diagnosed after repeatedly visiting the gp with swelling to the leg, itchy rash to the palms of my hands and numbness to parts on my leg i eventually ended up in A&E after several weeks backwards / forwards at the doctors, my right thigh swelling up with massive bruise to the groin. I was admitted after A&E doctors didnt have the answers. my diagnosis still was unknown but after a few days i started having chest pains and eventually a CT scan showed i had a PE they then inserted vena cava filter to stop the clot moving and causing more problems. During my hospital stay i was on clexine injections and Heparin but had further complications like yourself have a massive DVT in my vena cava and loss full circulation in my right leg, the doctor discussed amputation but fortunately the blood flow returned. i eventually came out of hospital after 77 days.

I just wanted to say it changed my life completely i had to give up the person i once was and the job i loved and worked so hard at. I am coming up to 8 years i dont know what the future holds, i still suffer from aches and pains, swelling, circulation and mobility problems i have to take things easy and know when i have done to much and like yourself try to forget them and just get on with it like i am normal or the old me and put my illness to the back of my mind, i put on this big brave face to every1 that im ok but when i am alone i struggle, i know exactly what you mean though when you say you dont know if that pain is a clot or just pain do you see the Gp or go to A&E !! i just never know what to do if i saw the gp everytime i had pain id be there everyday but feel nothing was ever explained to me properly. i am under two different hospitals one for my INR and other for Haemotology but they do not access each other and i do not have a good relationship with my Haemotology since my old consultant left and have moved house so dont know my GP either.

I have joined groups like this to gain support and hear other stories in the past few weeks time to get my head out the sand now and gain some knowledge for myself , your story really did stand out to me as your thoughts and experience was just like mine. I have also read a book called Talking about Lupus that has really opened my mind and answered lots of unanswered questions for me i no longer feel i am going mad. I have got my first ever Rheumatology appointment in march so i hope that it will all start to make more sense and not feel i have been let down in knowledge and understanding

Good luck for the future


Hi Lucky

I understand the feeling of grief, the living with uncertainty is scary, the tragic problems with pregnancy and deliveries.

I too have had the dvt`s and Pe`s and I don`t want anymore.

I count my blessings every day that I have my 3 beautiful children + gorgeous step son (they read these blogs so not leave any of them out) helps them understand there crazy mum.

I too hope for more understanding of Aps and better treatments,

I hope we can help and be here when you need to unload, rant and share the bad days and hopefully the good ones.

Take care, gentle hugs love Sheena xxxxx :-) :-) :-)


You are not alone for what that's worth. Make the best of each day and pray that you'll have another day tomorrow and be thankful every morning when you awaken. I have strong faith and that gives me strength to face each day. I have APS, Lupus, Diabetes and Atrial Fibrilation to name a few. I had a stroke in 2009. I am 63 and feel blessed to still be here to enjoy my grandkids. Don't let this disease take control of your life. A positive attitude goes a long way. Laugh everyday, but cry if you feel like it. Don't hold any emotions in. Take care of you! Cheryl


Hi Lucky

I was diagnosed over 12 years ago - aged 19 and had my transplant at 24. I live (as it sound like you doo in your update) in concstant denial terrified of crossing from long-term ill to hypochondriac! However sometimes (especially when I have to inject or take pills when i don't want to) it gets to me.

Sadly there's not much to do about it - just try not to be too hard on yourself and fill your life with fun stuff...

I hope you feel happier in yourself too but rest assured, we all understand what you are going through when you have bad patches - it's perfectly normal!

Take care



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