Sticky Blood-Hughes Syndrome Support
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Tougher than I thought

Since being diagnosed in 2003 with APS, I have lived in fear of being in a situation where I had a medical emergency in an area with few medical resources. I have always had high titers of antibodies and religiously stay at 3-4 inr. I was recently thrown from a horse and broke 12 bones. I was on top of a mountain near Canada and it took 2 1/2 hrs to get down the mountain in the back of a pickup on logging roads and another 4 hrs to find a hospital. It was 18 hrs before a surgeon saw me. I knew I was bleeding internally. And think I went into surgery with an Inr around 2.2. I remember having a discussion with my doc that even at 3.0 my blood is just thinned down to the same viscosity as his is and that bleeding profusely was unlikely. He said he wasn't sure that was true. Anyway I know that I can get thru something pretty dreadful and still be ok. Some of my fear is gone. I know that a lot of newbies are frightened and depressed by a diagnoses of APS. I manage my disease, have returned to work full time and have finally got to a place where being sick is not the center of my world. I want you folks to know, without diminishing what you are experiencing, that it can be done. Hangin' in there in California

6 Replies

Great positive post, I hope others who may have fears gain something from your post danaja. It must be a scary situation to be diagnosed and live in fear of major incidents I can only imagine how insecure it must feel. Glad you got through your accident safe and well. I sense that anxiety and stress can go hand in hand with APS, so for you to be less fearful must be a weight off your shoulders somewhat :-) x



Many thanks for your interesting post, and well done!

I joined recently although was diagnosed in 2005. Mine included Lupus. I've lived virtually full time in Spain for years and finally had the courage to swap my medical here two years ago. My high heart rate and damaged legs, and ankles were the main reason to seek a better climate. I found that within a week my pulse lowered by half, 120/130 to 60/70, & the brusing and pain of rheumatoid damage in legs/ankles was eased greatly. I had also had control gained by medication and my Consultants were happy for me and wrote letters well to pass to my new Doctors.

All was fine. Until my INR started dropping in the Spring of 2013. And then I realized my new Consultant had no knowledge of APS, or Lupus. I was actually ticked off for NOT taking my warfarin. And all of a sudden on medical sheets I saw Fibromyaligia written beside Lupus 'in remission' & AF.

To cut a very long story short the hospital have become useless, even refusing to treat an ongoing problem of synovitis in my ankles, diagnosed in 2011, & if it wasn't for the supposrt of my previous Anticoagulation Unit in the UK, and my local Doctor who is, due to my problems, increasing her knowledge through study, and my trusty CoaguchekXS, I would have to, through fear return to the UK.

Last Autumn a kidney infection arrived one morning and a huge flare of APS symptoms followed as I revovered as well as a swollen Pancreas.

Although it may, if outside, seem simple - change hospitals, return to the UK even, or as I've seen advice here find a specialist locally. Please do believe this, I know that actually that isn't as easy as you would like.

It's made me appreciate the 100% care, and superb knowledge of those that, thankfully, taught me well and cared for initially. Both NHS Consultants.

And do please appreciate that typically, with Lupus, I looked well before my recent troubles. This confused my new Doctors into rediagnosing me with problems I haven't got, as well as not understanding why I take a whole range of medication. Not their fault 100% maybe, but their lack of knowledge is hard work for me. And they wont listen.

I mean this as no 'poor me' story, believe me. But to make others aware of something simply. Appreciate your medical support.

With respect,



Sue, it's good that the NHS Consultants trained you well to know and navigate your own care in less informed areas. It's nice to have the UK expertise to watch our backs across the pond. It sounds as though there are budgetary pains affecting your care in the UK, so I hope the facilities for Hughies there will always stay cutting edge for us everywhere.


Hi. I am glad now I took good note of all that was explained to me, and read so much. Spain has made many cut backs medically and although my local Doctor here is doing her best I am concerned. I'm one of those that keeps their chin up, but being honest it has made me feel very alone. Without self-testing, and UK support I would have no choice but to return. The attitude has changed here in the last few years & is seriously making me take things cautiously trying to get further help. Insecurity has crept in but I keep looking forward.

Stay strong yourself. Many thanks for your note.



Loved your post Dana. I'm past the anxiety you get after initial diagnosis with every bump and bruise. And I'm at the point where I don't worry on the motorcycle that much, but still have a good respect for what can happen. And I will go zip lining one of these days in Costa Rica, but I still have concern for those "off the beat places." Wow, 12 broken bones out in the boonies is reassuring that you can survive. Did the doctor give Vit K afterall?

California weather is great for being active. I make sure my cell phone is charged while hiking, but your post gives me more confidence instead of worry when I might trip on the trail in the future.


WE can't live our lives in a bubble - at least i don't want to - the big worry for me is the brain -flares there are scary but anything can happen at any time is my I try to do what I can and then a little more !! I am impressed with all written.great positive stories that inspire . super job all--------------------- jet


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