Antiphospholipid antibody syndrome

Okay, I will try to make this short and condensed as possible.

My younger sister has a blood disorder that makes her prone to blood clots. This disorder first reared its ugly head when she was pregnant with her first child 16 years ago. At that time, the doctors thought the blood clot (DVT) was just a complication of the pregnancy. 18 months later, she is pregnant again, and she develops another huge DVT. Now the doctors are thinking that it is something else besides the pregnancy triggering the clots. She gets through her second pregnancy, and then is started on Coumadin therapy. She has tried going off the Coumadin (under a doctor's guidance of course, but the clots came back so she is on it for life).

My sister's disorder which is deficiencies of Protein S and C, has a strong genetic tendency to it, according to her specialist. He told her that if she had any sisters who were considering getting pregant or having major surgery, they needed tested for this disorder.

So, I talk to my doctor and he orders some tests after speaking to the lab pathologist. At first, I have just blood work done to check for the deficiency of Protein S and C. Those came back negative (meaning I didn't have the deficiency) but the pathologist recommended a more extensive panel to be ran. So I get more blood drawn, to the tune of $2000 (thank goodness for health insurance). It takes awhile longer to get these labs back because they have to be sent to speciality labs to be tested.

I finally get the test results back with an interpretation from the pathologist. The interpretation says something that the presence of "anticardiolipin antibodies" may be clinically significant if they are persistant. The recommendation is that I have my blood redrawn in 12 weeks to recheck for the anticardiolipin antibodies. It also says something about the "finding of positive anti beta 2 GPI antibodies is significant since they have a high positive predictive value for thrombosis." The name of this disorder is "antiphospholipid antibody syndrome."

If anyone is still reading this, I am impressed. I am not sure what this means for me in the long run, but I am sure that for my surgery it means they will have to be even more diligent about DVT prevention. Which means, not only will I get to wear the lovely SCDs (the things on your legs that pulsate every few minutes) and probably TED hose, but I will also probably get the joy of Lovenox twice daily (a blood thinner injection than is given in your belly).

I was just wondering if anyone else here has encountered anything like this prior to their surgery. I know after I have recuperated from my hysterectomy, I will definitely need to talk to the doctors about a long term plan. My guess is that will involve taking an aspirin daily, as long as I don't develop a DVT post op. If that happens, then I can probably look forward to Coumadin. Yippee.

Just one more thing on my plate to deal with in the next 4 weeks. I guess I am not as freaked out about this possibility as I am about the post op pain and possible alterations in my sex life. My husband isn't concerned either, but my Mom is pretty keyed up over the whole issue. I guess it is a scary thing to know that 2 of your kids are prone to blood clots.

Thanks for letting me share.

Good for you getting that checked out! Since I don't have a personal experience to share with you, I don't have any words of wisdom. I hope your surgery goes very smoothly and I'll be praying for you.

Deb

I had the needles in my thigh twice a day and you can't even feel them. I am on oestrogen now though and am taking a bloodthinner for safety. But that's nothing...it's good you know you have a predisposing condition so you can be more vigilant.

I had my blood work-up done about a week before my surgery. The nurse called me to tell me that they found an antibody in my blood and that in order to have the exact match for me from the blood bank, I'd have to come back in and give more blood. I was like "You found WHAT?" She just said that it was probably from when I had my c-section or from my LEEP surgery. I can't explain it all. All I know is that I had to give more blood, they found the match and all was well.
I wore the leg compression boots for about a day, probably less.........I hated them. A nurse came in to give me a shot in the belly. Not a big deal at all......the needle is VERY thin. I later asked the nurse attendant if I could have a break from the boots and he said "Yeah, for a little bit then they have to go back on. Well, did you have a shot in your belly?" I said yes and he said "Well, then you don't need them." I was like "WOO-HOO!!"
I had 2 more shots in the belly. I was in the castle for 2 days.
The only thing I noticed later was that where I got the shots I was very yellow for a couple of weeks and it was tender at those sites....just to let you know.

I had a visit today with my primary MD about what I need to do long term with this diagnosis. He said his recommendation is that I start Lovenox injections 24 hour post op (due to the spinal DuraMorph I plan to have) and the compression booties. Then when it is determined safe, I will start on Coumadin and stay on that for 6-8 weeks until I am back at my baseline functioning level.

My primary MD doesn't think I need to go on Coumadin indefinitely because he thinks the potential risks of long term therapy outweighs the benefits, especially since I haven't had a blood clot.

I think I have my Mom calmed down now about all this. She is more worried about me developing a blood clot then she is about the actual surgery.

I asked my doctor what he thought the chances were that this was a false positive (on my labs) and he said he doubts it given my sister's history. I will be retested sometime in January (at least 8 weeks post op) to see if the titers are still elevated. Sometimes inflammation, illnesses, or other factors can cause the titers to be falsely elevated. So they want to recheck me to just make sure that the values were true.

Thanks for all the support here. It is wonderful! It seems like no one else understands the fears and anxiety I am having facing this surgery.