Sticky Blood-Hughes Syndrome Support

Had the surgical breast biopsy Friday

Had the surgical breast biopsy Friday

I had the biopsy Friday and I am happy to report NO clotting problems...or bleeding problems!!!! I was SO relieved. The night of the procedure I was home and scared to even sleep without anticoagulation so I stayed up until I could use Fragmin again.

The most worrisome part of the whole thing was being off anticoagulation for a day.

We all know that more knowledge needs to get out there about APS/Hughes...but I was shocked at how I was poo-poo'd by several nurses/doctors about APS. Most asked me what it was. Another saw hypercoaguable and said have Factor V Leiden. I said yes and Antiphospholipid Syndrome. He said well I am just putting down Factor V Leiden on your papers. Ugh.

If someone has diabetes and coronary heart disease...are you just going to put one of them down??????

The experience of the biospy itself had some rotten parts which I will be addressing with the proper people on Monday. Results will be in probably Tuesday or Wednesday.

At any rate...I feel like I need to take a HUGE poster and books with me to distribute to nurses and doctors each time I have to go to the hospital. Onward we go.

8 Replies

Hi hon

Glad your biopsy went ok!?!? I hope results are ok.

Sorry that you were exposed to more medical ignorance. One day maybe they will catch up, for all our sakes i really hope so.

Big books n posters, if all else fails may have to throw the book at em. Metaphorically speaking of course.

Take care gentle hugs love sheena xxxxx :-) :-) :-)


Glad all went "well" and no clots but so frustrating about those drs and nurses!

Fingers and toes crossed for the results.

(I would be panicking about being off anticoagulation for a day too)


Doctors & nurses never seem to have a clue. But there are a few rare ones out there that really make the grade!!!!!


Woot!! Glad its over for you!!! Any results yet? Keeping my fingers and toes crossed for you!!

Regarding them not putting APS down, I would have made them write it!!


Poo Poo is right. Alot of medical people don't get it. To me it's kind of scary that we always have to be our own extreme advocate.



Glad it went OK.

I echo your concerns about fiddeling with INR medication. Over here in the US I have been fired from a GP's practice because I refused to have a colonoscopy. My GP did not believe APS to be a "real" disease and assured me that my blood coagulation level would be easily within range even though I would be off warfarin for a few days. At this point I reminded her I was allergic to heprin, lovanox and possibly fragmin. She responded with, "Oh, you're just making excuses."

I then tried to explain that for me, personally, the cost/benefit analysis of this procedure did not look good. I got (and get) twice yearly stool samples, which have all been negative for anything obviously scary. But she again, impatiently dismissed my concerns and said that she was not going to allow me and my stubbornness to "ruin" her statistical ratings for the number of her patients who had undergone this preventive procedure.

Bye bye to that doc.


PS: Love your note to self.


Glad the biopsy went well, I too dont like it & get nervous when taken off warfarin :( its only normal for us to feel that way.

As for the medical proffesional ........I think you all know all too well how I feel about that!

I actually do take my leaflets & posters around with me everywhere & give them out to the hospitals I'm in, docs even shops/chemists in know what has never been said to me yet?'s ok we already have some!!!! it would be so nice to acually hear that!!

All the best & good luck with the results, Sue xx


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