Liz: Coagulation Disorder Questions

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In a message dated 12/16/2003 4:45:53 AM Eastern Standard Time,

mom2homer@... writes:

> So my question, until I have the bloodwork done, goes to anyone out

> there who has a blood coagulation disorder. How did that impact your

> approach to treating your fibroids? From what I've read, it sounds

> like if I do have clotting problems, UAE isn't even an option; but

> I'm also worried about the amount of bleeding involved with a

> myomectomy.

>

> Thanks for any thoughts,

> --Liz

>

Hi, Liz:

First, remember: You really need a proper, solid DEFINITIVE diagnosis before

assessing risk, and treatment. Each blood condition is a bit different.

So --promise me you won't speculate until the results are in and

you have a DIAGNOSIS--ok?!!! :-)

Liz- I don't have a " coagulation condition " , per se. However, I am at

heightened risk of both bleeding and clotting. I have a chronic malignancy of my

bone

marrow-- a defect in my stem cells, resulting in overproduction of all my

cell numbers. Because of this, I have HIGH COUNTS and hyperviscosity (sticky

blood).

Interestingly, (paradoxically. . . ), in surgery, I could be a bleeder OR a

clotter. OR both. I'm also at heightened risk for DVT, TIA, and a bunch of

other scary acronyms!!!!! (BUt hopefully, NOT " D.O.A. " !!!!!--gulp!!!)

However, I underwent both a successful UAE and years later, a successful

myomectomy.

I had a pretty thorough head-to-toe exam prior to my UAE, and I don't

remember my hem condition being of concern (although OTHER conditions from my

very

colorful medical history were discussed--but NONE of them proved to be

problematic).

Truthfully, my UAE was very painful. Of course, I later learned I had 46

fibroids that were affected!!!!

And, like another poster here (TXGENES) I blame a lot of my pain on

inadequate nursing care after the procedure. (But that's another post...)

My results from UAE were dramatic and very positive. I had a 55% reduction in

uterine volume, I had significant relief from bulk symptoms, and my heavy

bleeding was resolved--permanently. UAE gave me my life back, and I remain

enthusiastic about UAE as a fibroid treatment option.

Three years after that, I had a myomectomy, not for fibroid symptoms, but due

to kidney findings.

In the hands of a skilled MOM (Master of Myomectomy), you really need not

fear massive blood loss. I lost the equivalent of less than 1/4 cup of blood.

Some anemic women on this list lose that amount in a few hours!!!

Both my hem-onc (who knew NOTHING about fibroids and myos!!!) and my GYNO,

(who knew NOTHING about my hem condition !!!!) portrayed my myo surgery as being

" life or death. "

I realized I would have to be my own researcher, my own advocate and get

facts, NOT medical hysteria based on uninformed out-of-date info . For

example,

my hem-onc STRONGLY discouraged me from getting a myo, and said " Just get a

HYSTERECTOMY! Do you realize you could get a DVT and . . . DIE during your

myomectomy?!?!?!?!? "

And then I asked the obvious: " Um...Doctor, would having what YOU advise---a

hysterectomy, ANOTHER PELVIC SURGERY (uh-duh!!!) lessen my clotting/bleeding

risks? "

" Um, well, uh...no, er, yeah...I guess not..... " he admitted sheepishly.

We've really got to ask tons of questions (and at times, even cross-examine

our docs) to get accurate info.

To satisfy both my hem-onc and gyno, I ended up taking a short period of

pre-op oral chemotherapy to drop my counts in the weeks before surgery.

And all was well.

If I were you, I would stay very hopeful. I would also discuss your disorder

with a UAE EXPERT like Dr. Kirsch (who contributes on the embo board), whom,

to my knowledge has done the most UAE's in the world and has " seen it all " --or

nearly all .

Women with all sorts of disorders, and debilitating conditions have had UAE.

Keep the faith, Liz, and keep asking LOTS of questions!

Roma