Wednesday, October 10, 2007

Rule Number Three

J~ and I flew to Tennessee for four days, Sunday through yesterday, so that I might introduce him to a place I once lived and loved, at the end of a dirt road at the end of another dirt road at the end of yet another dirt road, and to the dear friends I made there a decade ago.

We stayed in a lovely guest cabin belonging to some of these friends, under a quilt I sewed for its owners nine years ago, under a roof beam I helped raise a year before that.

Alone together, J~ and I hiked and talked and lounged. We made love in a field. We slept late, read books, took a good long run, and scratched behind the ears of many sweet dogs. With friends, we laughed and ate and shared stories. We also visited loved ones in the hospital, and cooked and shopped for groceries for their return.

Which brings me to the subject of this post.

Some of you, with your comments this week about my choices (or lack thereof) regarding reproductive testing, have your finger on my third of three rules to live by. I'll say more about those choices in a minute, but for now, without further ado, here's Rule Number Three: Ask for help.

What could be easier, right? But for some of us (namely me) this can, sometimes, seem near impossible. I put limits on how much help I imagine I am allotted. J~, like so many men, trained that they are supposed to appear all-knowing and all-competent, does this too. Which leads to the recursive: When uncomfortable asking for help, ask for help asking for help.

Which is why I've asked J~ to help me think about what comes next. I am shy about calling the doctor to ask the one question I forgot to ask in our appointment: what about the sudden, heavy bleeding I had with the demise of my most recent pregnancy? Is that to be expected in pregnancies that fail for the typical, genetic-combination reasons? Could this indicate a clotting disorder?

Maybe I will test for that, after all... but I'm not sure I'd take blood thinners (aspirin included) as, I am told, clotting disorders rarely lead to miscarriages, and when they do, it usually doesn't happen until at at least 14 weeks -- none of my pregnancies ever got beyond twelve.

I probably won't take progesterone, or even have my levels checked, as my research (and the doctors I've spoken to) suggest that low progesterone has never been proven to cause pregnancy failure. Progesterone might test low because a pregnancy is not viable in the first place.

As for karyotyping (genetic testing of myself and J~) I don't see the point. It would have been nice to have information about the past pregnancies. It would be nice to rule out, definitively, all other problems. But now, at worst, we'll learn that the odds of a good genetic combination aren't in our favor. In that case, short of IVF (which helps by selecting genetically viable fetuses from the outset, and involves a level of invasiveness and expense that is beyond what feels right for me), nothing can be done to improve our odds except to keep rolling the dice.

In the spirit of Rule Number Three, I welcome your thoughts, comments, stories, experiences, insights, prayers, jokes, etcetera! Let the comments section be a beacon to me and to all who light upon this blog post!

12 comments:

Mommy Someday said...

Hi! Michelle from Mommy Someday delurking here. I know what you mean about asking for help. I always feel like a total idoit! But, you might consider doing something that really works for me. I never get up the courage to ask all of my questions when I am in the RE's office - or I get so flustered I forget to ask. I have started typing up all of my questions and thoughts and then faxing them to my RE. I think he likes it that way! It gives him time to read my concerns and questions, and he makes notes, etc. Then, he (or his nurse) calls me back when they have a nice chunk of uninterrupted time and we talk about it. (No uneasy, rushed phone calls - the way it happens when I just call.) It is great and it works really well! I have stopped feeling so bad about my questions, and I actually feel more impowered because I am getting the information I need. Good luck!

Anna said...

Hmmm...I'm not sure where you got the info about clotting disorders, but it's quite different from the information I got, from 2 REs, a rheumatologist, a high-risk OB, and a couple of journals. But before I say anything else, I should say that I totally respect any choice you make and I don't mean to sound as if I'm saying, "Hey, Lovenox worked for me and it'll work for you, too!"

But...the point is to be fully informed and then make a choice, right? Clotting disorders don't only cause miscarriages after 14 weeks. All of my doctors support the theory that having "sticky blood" can cause tiny "microclots" in the developing fetal blood vessels and cut off blood supply. Now, my second pregnancy ended at just 6 weeks, so there weren't even blood vessels going into the fetus by that point. But I passed an incredible number of clots during the m/c, so something odd was happening. And given that pregnancy raises your risk of clotting in general, I'm very glad to be on blood thinners this time around.

This may not be your problem at all. But if it is, it's such an easy fix. I'm so grateful to my RE for agreeing to test me after my second miscarriage, and not making me wait until I hit the required 3 losses. Of course, now there's the sadness of thinking that maybe the first baby could have lived, but didn't because I have this disorder.

One thing I'd like to understand better is why you've eliminated all possible interventions from your thinking. I totally get not wanting to go as far as IVF. But given how many women do credit aspirin or progesterone or Lovenox with saving their pregnancies, I wonder if you're maybe discounting these options too quickly. Are you holding on to some ideal of "natural," pure pregnancy? Is there some deeper shame about needing help getting or staying pregnant? I don't mean to project here. Maybe I'm just misunderstanding you. And if it's more that you're just realizing that you might be happier without a baby, I totally support you on that.

Suzanne said...

Amy - I urge you to check out Dr. Jonathan Scher - he has helped many people get pregnant and stay pregnant. He is in NYC. I did IVF and had the full workup - they found that I had a blood clotting disorder and elevated natural killer cells. I never saw Jonathan Scher but I know many women who swear by him.

FWIW - my OB (who is very well respected in the field) insists that she has had patients who miscarried repeatedly and were successful after adding in a simple baby aspirin once a day ... others used IVIG (that is also what I used). I also recommend Dr. Etingin in NYC - she is a hematologist and really helped me. I agree with Anna - your information about clotting does not sound correct.

I wish you all the very best and if I can be of any help at all - email me!

Suzanne

Alice said...

I agree with the other posters. It is believed that if a thrombophilia is treated it will significantly increase your chances of having a healthy pregnancy. Never heard the 14 week scenario, however. Several books I recommend: Coming to Term by Jon Cohen and To Full Term by Darci Klein.

Aurelia said...

I've lost babies at every stage, and I understand the reluctance to test, because it might be something to large to fix, which is a depressing thought.

Or it might be too easy to fix, and your pregnancies could have been saved, which is also depressing.

Anyway, I'm on my 8th pregnancy, so I hope you will listen to this. Progesterone can save pregnancies and not just ones that have bad eggs. My son Mac would not be alive today if I had not taken progesterone for the first trimester. My Doc tried to tell me that it meant my eggs were bad, I should let the pregnancy go, wait til next month, I could get better eggs, blah blah blah. At 9dpo, my hcg was 9, and my progesterone was 8, way to low.

But I insisted on taking it, and he is 7 years old now, and frankly, pretty awesome. Not a bad egg after all, hmmm?

There is evidence for progesterone, but it's not great because we have such poorly done studies on pregnancies and outcomes in general. We assume that younger women have less miscarriages, and better eggs, be we have no evidence it's true. We assume lots, like thinking that progesterone causes masculinization of female fetal sex organs, something that Motherisk has proven to be completely and totally untrue. If you look at the March of Dimes website, they are now promoting progesterone throughout pregnancy to prevent preterm birth.

The aspirin is used btw, not so much for clotting, but for immunological issues, and to prevent inflammation. (It can help with clotting, and a recent study showed that if every woman took aspirin all during pregnancy, preeclampsia would likely disappear.) Immunology is a major cause of early losses, along with chromosomal problems. Low molecular weight heparin is used for clearing clotting and for increasing blood flow to the uterine artery which in turn can build a better placenta.

As for testing, the reason the studies look so fuzzy, is because not every clotting disorder has been discovered yet, and some have not yet been linked to pregnancy loss. But a quick look at the remains of the pregnancy, by a pathologist, or as a previous poster mentioned, the evidence of large clots passing, is enough to show problems.

Did the remains get karotyped? Were the losses trisomies or other chromosomal losses? Because those have nothing to do with your chromosomes, or a balanced translocation like Julia hippogriffs.

If you don't want to test, then don't. But make the decision based on facts, and start questioning the docs. Not every doc is right, not every book is right. Some are better than others, and some are out-of date in thinking and knowledge.

Take care, and my apologies if this is too much for you to take in.

missedconceptions said...

Aaack! I left a huge comment yesterday that never made it.

Basically, I agree with everyone else has said. I have not tested positive for any clotting disorders, but immunological disorders also cause clots in the fetal/placental tissue as the mother's body tried to "protect" it from the "foreign" tissue. Given that I have colitis, allergies, hypothyroid (all auto-immune diseases), and recurrent miscarriage, they are treating me with baby aspirin now and Lovenox, when I do get pregnant again. Those together increase the odds to over 70% for a successful outcome, even after 3 miscarriages.

As Alice suggested, "Coming to Term" by Jonathan Cohen is a great book for the science behind all of the new technologies. Mr. MC is also a medical librarian, so e-mail me if you would like any specific information.

A baby aspirin a day is not invasive, and that alone significantly improves the odds of a successful outcome (40%), even without the Lovenox.

I understand not wanting to be taking medicine while pregnant, but it could literally be a life/not life decision. I understand being hesitant to go as far as IVF, but perhaps understanding why you do not want to do anything at all may be very telling and help you understand your larger goals and wants.

The quilt, by the way, is beautiful! The cabin looks very Japanese-ish in some of its detailing -- lovely!

Paula said...

Many of us who encounter infertility find ourselves struggling with how invasive (unnatural?) is too invasive. I'm one of those people who never took birth control pills (until, ironically, during an IVF cycle) because I didn't want to mess with my body's hormones or increase my chance of a heart attack, stroke, etc. even though I'm a nonsmoker. (Later I found out that bcp's can decrease your chance of getting ovarian cancer--so much for my natural approach.)

Still, when we found ourselves unable to conceive, I was ready to submit to all those invasive tests to see if my tubes were blocked, if some small fibroids were causing a problem. I really wanted answers and to fix the problem, even though it's never that easy.

I admire your Zen-like calm, your sense of acceptance, which I never possessed. I wished I could have jumped off the roller coaster that I'd gotten on and abandonned the sense of determination to have a child. In retrospect, I'm glad I didn't.

I remember clipping a New Yorker cartoon that showed a toaster spitting out two burned slices and someone saying something about "it's how it was meant to be." I always bristled at that phrase during our infertility. So, the loser drug-addict relative is "meant to be" a father, and my stable, loving husband isn't?

We took the invasive approach. We never did get any real answers about what the problem was. Three IUIs, 2 fresh IVFS, 1 frozen IVF, and 2 miscarriages later, we have two wonderful children. Despite compromising on my ideals, it was worth every bit of suffering and more.

It's funny. My last pregnancy was uneventful and free of intervention. The natural childbirth that could have happened in a field because it was so hands-off was empowering and amazing. Somehow, I'd gotten back to the philosophy I'd started with after a long and painful detour.

We all have to do what feels right for us and hopefully feel good about it at the end of the day, maybe not without regreats, but with only regrets that we can shoulder until the end of our lives. I wish you luck!

Anonymous said...

I just want to reiterate the Jon Cohen recommendation. He and Julia indichova helped me get to two beautiful babies (naturaly conceived twins!) after 5 miscarriages-at 41 years young. Hang in there and try to keep your eye on the ball. Choose your path and plow forward!

Paula said...

I have another somewhat relevant story I wanted to share, just in favor of reflecting on what you will/won't do:

A very close friend of mine was aware that my husband and I were contemplating IVF. A former housemate, she really is a wonderful woman, but being someone who truly doesn't want children, I think she had a hard time understanding our yearning.

Her comments were "I hope you don't put yourself through that," "Why don't you just go to Vietnam and get a baby?" and, half-jokingly, "Damn, I hoped you were going to remain childless like me."

Of course, I went off on a rant of my own about how she had availed herself of technology to end the two pregnancies she desperately did not want and how selfish I thought it was of her to hope I would not avail myself of the available technology to conceive a child or children I desperately did want. It's always bad to tell someone what they should or shouldn't do.

I'm still amazed that we managed to get through that disagreement, but in the end she supported me and our decision to do IVF, and I knew that she only wanted to spare me further suffering, which wasn't really an option because ending treatments without a child would have brought its own pain.

Amanda said...

I have a condition calls APS antiphospholipid antibody symdrome. APS causes mico clots to form in the placenta, causing malfunction. ALL 3 of my miscarriages failed at 6-8 weeks. I take a baby asprin daily through 18 weeks, and have 3 healthy, term infants since being diagnosed. The neurologist also speculates the APS is a contributing factor to my migraine condition (although no definitive research has been done connecting the two) please reconsider the possibility of an immune or clotting disorder.

Anonymous said...

amy - may i also point out that St Mary's Hospital in England, which has a recurrent miscarriage clinic and posts their research on the site - discovered that women who unexplained recurrent miscarriages have something like an 80-something% chance of having a full term pregnancy. This is actually the majority of women with recurrent miscarriage. So your cross your fingers approach could work in your favour. I think the testing is incredibly stressful - it elevated the stress level I felt and a friend who also went through it concurred. So the choice whether to do it or not is a very personal one.
My friend had success with progesterone. Her doctor acknowledged that the evidence for progesterone deficiency is spotty, but argued that there was no harm in taking it so she gives it to any patient who feels it worth the shot. Who knows if it was the progesterone or chance that made pregnancy #4 stick. She also took baby aspirin.
Asking for help is not something I like to do either. It sucks for proud, or very self sufficient people. All I can say is that you are such a self aware and thoughtful woman that I have no doubt you will find a way.

Sarah said...

Hi there. I just wanted to add that taking progesterone can save a pregnancy if your body is not able to naturally produce enough progesterone in the first trimester to sustain the pregnancy. I am one of those people. One of the warning signs that you have a progesterone deficiency is if the luteal phase of your menstrual cycles 10 days or less. I was on progesterone with my son, and now he is almost 2. I was not with baby #2 and we lost him at 10 weeks. I am now on progesterone with #3 and have made it to 12 weeks so far.

Progesterone cannot hurt and can definitely help, please don't discount it completely.