Anyone have a clotting disorder?

DavezWife

Please excuse the butting in... but I'm just trying to learn as much as I can about my new diagnosis.

I was recently diagnosed with an autoimmune disease called antiphospholipid antibody syndrome, (APA) where they suspect clots have prevented some or most of my 7 pregnancy losses from sticking.  I also have ovarian issues, and male factor... we're a hot fertility mess. ;-)

Anywho... this is treated with lovenox/heparin, and baby aspirin. lots of complications possible thru the pregnancy. Lots of monitoring of both baby and mom.

I come to you guys to see if anyone has also been diagnosed with ANY clotting disorder.... because neither my hematologist nor my OB/RE can tell me if carrying twins would be DEADLY or just high risk like a singleton would be. I'm doing fertility treatments as we speak (gonal-f, ovidrel, IUI) and set to do IVF in May if this cycle flops.

The possibility of more than one is real. That's what happens when you step up to meds like this. Do we need to go thru IVF and ONLY put back in one? Can we take a chance on doing an IUI on 2-3 mature follies? (please understand I am 110% aware of the challenges twins+ present, we would prefer just one healthy baby)

I need to hear what your docs have said about this, if you have a clotting d/o as well.

Thanks. I appreciate it.

 

charteachs

I have a single C mutation of MTHFR.  I've had four losses all together.  Three between my 11 year old son and 5 year old daughter, and one in February of 09.  It was only after that last loss that I was diagnosed.  I started 40 mg of Lovenox the day I got my positive pregnancy test.  I am considered high risk for the clotting disorder, for my age (39), and for the fact that I'm carrying twins.  I don't believe carrying multiples is deadly if you have a clotting disorder.  As long as you're medicated for it you should be able to carry a pregnancy to term.  I believe there is a Yahoo group for your specific clotting disorder.  I'm a member of the MTHFR one, and I get a ton of information from those ladies.  Good luck to you!!

DavezWife

I always forget about those yahoo groups - good idea. thanks! (sorry for your hardships and congrats on the twins, though.)

 

piccolina09

Hey Davez! I have factor II prothrobin gene mutation, heterzygous version. Which means my blood has the sticky substance in it that makes me more prone to clotting.  I was on lovenox and baby aspirin until week 35, on heaprin from week 35 to delivery.

DavezWife

picc - (hey!) anyone scold you or warn you on twins vs. one?

Again... we plan on one, but you never know.....

Brusher

I have APA, I took a baby aspirin throughout the pregnancy--still to this day i question whether I should have had lovenox/heparin as well. But what happened after my c-section was scary. I got a blood clot in my lung (pulmonary embolism) about 20 days after surgery. Now I had a lot of factors going on: I had surgery, was pregnant, have a family history (sis had one), and was on bedrest for a month before the surgery. So for me, the risk came after giving birth.   

i can't speak about what happens with IF meds b/c I didn't go that route. (almost but it just happened for us on our own)

janjag

i have factor 2 mutation... a clotting disorder that makes you more likely to clot.  had clots/pulmonary embolisms at age 29.  so, i knew that when i did get pg, lovenox and/or heparin would be necessary to avoid m/c. 

then we had fertility problems.  needed IVF.  for me, the b/c pill and hormone shots required for IVF meant lovenox all the way, from the first b/c pill.  we put 2 embies in the first cycle, and it didn't work.  we put 2 in the second cycle, and we got TWINS   lovenox went all the way through the entire pg, and i think 8wks postpartum.  i started off scared of the shots, and SORE from the bruising, but eventually the bruising stopped, and the shots were just something that had to be done.  baby aspirin was standard for ivf cycles through 10wks (i think) pg.

i don't think lovenox + twins is an issue.  i just asked dh, and we can't remember, but i really don't think so.  EXCEPT when i went into labor i was still taking lovenox as i was 33 1/2 wks... so hadn't switched over to heparin yet.  at the hosp they had to do some blood work to make sure i would clot enough during c-sect as to not bleed to death.  that was a pain, literally, as i was in labor and wanted to deliver, but had to wait.  if i was too anti-coagulated, they would give me some special med.  but i was good to go, and had my c-sect with no special meds. 

i have read recently that good clinics are having great success rates with single embryo transfers, and that is the trend these days. 

good luck, and let me know if you have anymore questions re. this stuff!

DavezWife

Jan, and the others... thank you so much - very helpful!