Sticky Blood-Hughes Syndrome Support
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Need to know how to help a friend & Sojerns!

Hi I first want to wish all of my friends across the Pond a very Happy Easter Holiday! God Bless Y'all and keep you healthy and save from harm! May he hold you in the Palm of his hands and guide you through life without pain and struggle! Firstly my friend Madeline has a blood clotting disorder called PROTHOMBINTINE Gene Mutation! It's common but also she's had sever clots! PE's Blood Clots in her heart found by accident, and her legs! I've been to every single doctors appts for years b4 we found out!!! Also she has thyroid, alkylying spondylitis, it's auto immune, plus pulmonary hypertension! She was born in London and been back many times! We know each other since 14 yrs! We r sisters by choice!!! Been thru hell n bak together! Nanny 23 and her had their babies together! She needs to c a Hemotologist! She sees pulmanologist and is leveled for years now! I'm concerned and want her to be tested for certain things and see my Hemotologist! I've chosen to stay away from most docs accept him! I must go to Rheumotologist only because I finally looked it up and viewed tape! I recall someone saying on here about the temporary partial blindness! I don't admit this to anyone, but it's happening all the time! My INR best ever 2.65! Not good enuf! I know! Can u go blind from Sojerns? My friend shud see a Hemotologist and find out more about her disease correct?

6 Replies

Hi there, yes your friend could do with a trip to a Haematologist, and I enclose this for you for a read:   Regarding your vision problems you must tell all doctors in your care, including your Rheumatologist and Haematologist, and keep a diary of when it happens so you can match it up with INR or anything else that could be causing it.  MaryF


As always faithful Mary! Thank you! Yes as I look at my flat phone it goes rounded, distorted! Yes my meds off as in totally ready for a breakdown! My hubby passed out wen we were going to c my son's grave with Apsalms for PsalmSunday! We never made it to his grave Mary! I went to my Nephew Charles first as Stan waited in car! Cemetary 30 miles from home and hospital about 37 miles from home! I lost all my bottles of meds! Wen I realized it , it was too late for Pharmacy! I tuk Lovenox as an emergency to cover me! I had brought my meds to my sis as she is close to hosp and tuk them but they may have been thrown out! My hubby be home tomorrow! He had intestinal blockage and UTI! Way too much I want to go to sleep forever! Godspeed


Hi Deb,

Hope you can take your Warfarin in some way. Do you mean that you can not see on one (?) eye temporary?  I had that and it was microembolies. If it has happened after you missed the Warfarin that could be the cause. I never have it after being properly anticoagulated. I do not know about Sjögrens.

I hope you can sleep through one night but absolutely not for ever! Do not even think about it! 

Give my regards to Nanny and try to enjoy Easter!



Hi Kerstin the night I missed my warfarin I woke up with bloody nose and severe migraine! Brain fog beyond belief! I have Livenox shot I tuk last night and woke up in severe pain in good leg where I had blood pooling! My friends say I'm very aggressive and angry! Need tranquilizers! I tuk 1 gallium at 5 am wen woke up cuz my doc had given to me bak in December and had 2 left! They were for my leg! I don't know my sis says I'm argumentative! I asked people NOT to call me and they do anyway! I'm just exhausted I think! I just can't do this anymore! I don't want to leave my house at all now! I just wana sleep and stain bed! I don't have strength to even pik up Hubby today! Thx Kerstin 


 Hi again Deb,

I am worried about you! Ask your sister for help. You must have anticoagulation every day! That is the most important thing. 

Take care and go to A&E if needed!


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Hi in home and exhausted! Thx for ur help! I get a sense of relief from you all in this post! After I hear from y'all I relax! Thx this forum is amazing for me! You all help me more than you know! 


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