Sticky Blood-Hughes Syndrome Support
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Multiple DVT/Stroke Survivor

Multiple DVT/Stroke Survivor

Hi everyone, Sheila here saying hello! I'm new to this HealthUnlocked forum but not to APLSUK. That forum was one of my first and best sources for information about APS. I'm positive for three antibodies and have survived four DVT's, along with a stroke in my retinal artery which cost me the lower half of sight in my right eye two years ago.

I'm a crochet designer, Miniature Schnauzer Rescuer for over 10 years, I love to make jewelry, garden, write, and take care of my family. I have a lot to live for!

I used to operate a support group on MSN Groups called DVT/PE Survivors, but unfortunately MSN shut down its groups a couple of years back.

I recently copied some of the articles I wrote for that site and am placing them into a new web page called "Living With Blood Clots, Strokes & Clotting Disorders." I invite you read the article called "Fear" I just added on that site. Many people have described this disorder as living with a loaded gun pointed at you. Sometimes it does feel like that but there are ways to deal with those emotions and fears. You can see it at You are most welcome to visit.

I had a lifetime history of migraines and two miscarriages, but was not diagnosed with APS until my first DVT in 2002. I was given the standard protocol of 6 months on blood thinners, and then was to forget about it... somehow I had a feeling more was needed. So I consulted a vascular specialist and was promptly diagnosed with APS. I shudder to think what might have happened if I had "left well enough alone."

After living for many years in Omaha, Nebraska US, we were transferred to a very rural location in southeast Missouri. It was a major inconvenience to drive to the nearest town for a test to track my INR. Unfortunately I went too low and had the stroke in my eye. We have transferred back to Omaha a year ago and I recently found a really great hematologist who is setting things in order for me. He also found out I am allergic to heparin!! So no more Lovenox or Fragmin shots for me, I have to take an alternative called Erixtra. There's always something new it seems.

Didn't mean to run on forever! Thank you for inviting me to participate in your lovely new forum and I look forward to meeting everyone!

2 Replies

Hi Sheila

Thank you for joining us and sharing your link. I will have a read soon - I think that us Brits, are notoriously bad at looking after our emotions, I know I am! I am only just after living with it for 12 years starting to take an interest in my mental wellbeing. I think the US are (generally speaking) much better at this so it will be great to get another perspective.

Take care



Hi Sheila,

glad to meet you and welcome to the forum, hope you are well now and haemotologist keeps everything under control.

You sound like a very busy lady, and another fighter, surviver in our midst. Love your attitude too.

Take care, gentle hugs love jessielou x x x x x x


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