Thursday, June 18, 2009

Post-Op Visit: Good; Clotting Ability: Poor

Today was my two-week post-op checkup with my OB who did my D&C and endometrial ablation on June 4.

She said she was pleased with how the procedure went and gave me some photos of the inside of my uterus. The only thing that was at all unusual is apparently the inside of my uterus is heart-shaped. That sounds sweet, but it may have been a contributing factor to my miscarriages. (It's moot now since we no longer plan to expand our family.)

But the abnormal platelet function test that her nurse called me about just a couple days after the procedure is apparently more serious than I realized. The OB was pleased to hear I already have a hematologist, and told me to call him today.

I left a message for his assistant, and got a quick call back. "Your PT is 70?!" she asked. "Do you have it in front of you? Can you fax it to me?" Meanwhile, she was looking at my file on her computer. "It looks like Dr. D was treating you just for anemia. We didn't know you had a bleeding disorder!"

"Well," I replied, "I didn't know that either. And I don't know that I do."

Like my neurologist, Dr. D is out of town on vacation, but he's responding to email sporadically so she expects to have a plan for me tomorrow.

Hm. I guess if I'm not clotting properly -- I'm taking twice as long to clot as it should -- that explains the horrendous bruises I have from my blood patch experience ...

Stay tuned. I'll let y'all know what's up when I hear something.

(FWIW, the OB said that perhaps my difficulty clotting was related to my overall health issues. She says it sometimes becomes an issue for people with lupus and other autoimmune diseases. We'll see. I suspect this is just another in a long line of weird test results that don't lead to a clear diagnosis.)

Edited to Add: I vaguely remembered there being some tests run earlier in my illness because I was freaking out about my bruises. I dug through my very thick file of lab test results and discovered that platelet function tests had been run back in November 2007. At that time, the APTT that's causing concern now was 53.6. I don't know why that didn't get followed up on back then. I faxed over those results to the hematologist as well, so he'll have that much more to contemplate. I'm guessing that I won't be waiting until I'm due for an annual checkup on my MGUS before I see him again ...


Jeanne said...


My sister had been diagnosed with a bicornuate uterus which she was later told had been a misdiagnosis because she has a didelphus uterus.

The reason I bring this up is that the heart shaped uterus you described make me wonder if there was a septum in the uterus. A uterus with a septum in it is bicornuate.

The maternal-fetal subspecialist who eventually properly diagnosed my sister with didelphus uterus explained that she actually has 2 uteri (I think that's the plural spelling) rather than one. That means she has 2 cervixes and they were only doing Pap smears on 1 of them all those years before her proper diagnosis.

(I also have a friend who has endo and who has some sort of partial septum in her uterus. She had 3 miscarriages).

I know you said you aren't planning to expand your family but I ask these questions because if you you have a bicornuate uterus, it might be helpful to know.

I'm not sure how genetic it is but somewhere down the line it's possible that this information could be helpful to someone in your extended family.

Endometriosis is a genetic illness and uterine anomolies are more common in endo patients than in others. So, I'm no geneticist but I'm guessing that this might be important to know for genetic reasons.

As far as your abnormal platelet function, it's unfortunate that they didn't act on this when your prior test came back abnormal but it's good that it's getting addressed now.

Like you, I get weird bruises. I have chalked them up to my anemia. Since I have multiple autoimmune conditions, this post was interesting.

With the army of doctors I see, I have often wished they could all truly be working as a team. That NIH group you mentioned is doing exactly that.

One of my doctors actually tried to organize all of my doctors to have a meeting to go over things regarding my case but she ran into lots of red tape trying to set it up and there were numerous barriers to that happening (not the least of which was health insurance reimbursement).

That team you linked in your other post sounds like about the only way to get such a team (in the U.S. anyway) due to bureaucracy and red tape issues.

Thank you. Good luck!


Aviva said...

Jeanne: Wow! Actually, the OB mentioned that and told me that I didn't have that a divided uterus. I do have a septum, like you said, and I guess we'd have to talk to the OB if we decided to have another baby. But I've had an ablation (just a few weeks ago!) so that pretty much rules out the possibility of another baby even if my other health issues didn't.

Bummer on your docs not being willing or able to get together as a group to discuss your case. Have you thought about going to John Hopkins or Mayo or Jewish National to get that team approach on a treatment plan? It's something I keep considering but travel & money is keeping me from moving ahead with it.