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Tuesday, November 07, 2006

More of What We Talk About When We Talk About Blood

This is the problem with googling when you get home from a doctor's appointment. It just leaves you with more questions. Therefore, I'm stepping away from the computer.

I went to the hematologist today to find out the results from my blood work. I wasn't extremely worried because I spoke to his nurse the day before and she interpreted most of my blood test results for me over the phone and told me that everything looked okay.

The only thing they found was that I tested positive for the MTHFR mutation--a clotting disorder that is treated with folic acid. Because I had been taking 800 mcg of folic acid for the last four years because we were trying to get pregnant, I had unknowingly brought down my homocystine level. The only solid advice that he had was that I should never stop taking the 800 mcg of folic acid, even after we're finished having children.

The hematologist believed he would find a clotting disorder based on the fact that my children were IUGR and my fertility history. But in the end, we are left in this foggy grey zone where there aren't clear-cut answers.

There is nothing to treat. Therefore, there is no better chance this time around of getting pregnant without treatments.

It wasn't that I wanted something to be wrong. I mean, who in their right mind would want to do injections of Lovenox throughout their pregnancy? But you know exactly what I'm thinking right now--a diagnosis in the hand feels like a cure on some level. There is a clear-cut thing you can do to increase your chances of conceiving and carrying to term. Without a diagnosis, you're still just shooting in the dark.

And the reality is that we have a diagnosis. We're female factor with high FSH and low progesterone. But that diagnosis requires treatments to circumvent the problem. And a clotting disorder meant that we could bypass all of that and at least try on our own for a bit to see if I could get pregnant and hold onto the pregnancy without help. With just the daily injections making this pregnancy anything out of the ordinary. It's a weird trade-off to wish: no treatments but daily injections vs. treatments with some prometrium for a few months. I'm not even sure anymore which one seems more desirable. But a clotting disorder would have explained so much and right now, the only thing the hematologist can say for certain is that we've certainly had a run of bad luck.

This is where he left it: the ball is in our court. He believes we probably do have a clotting disorder, but science hasn't caught up with the body and there are possibly 1000 other things in the blood that they just don't have the tests yet to find. Thirty years from now, I may have a new flurry of tests that reveal the reason for the implantation issues and IUGR. But will I even bother to get those tests? My whole reason for doing this now was to increase my chances of having a healthy baby with the greatest ease.

He told me to think about it and gave me two scenarios where I may want to do the Lovenox anyway. Either I become pregnant on my own and want to be certain that I'm going to carry to term. Or we go for IVF and we use the Lovenox injections as an insurance policy to protect a $10,000 investment. Either way, the Lovenox injections are used widely and have few drawbacks overall. It may be worth trying just for the sake of trying if it gives us peace-of-mind. Though that's a mighty painful peace-of-mind for a chickie who is scared of needles. But it's his offer since we're stuck in this grey zone with an obvious problem on our hands and no way to diagnosis it.

I had the blood work done because I wanted to be thorough and follow the advice of the OB after my children were born IUGR. And because we need to make some hard decisions that are entirely based on finances that weren't there the first time around. If you could only do IVF or adoption, which would you choose? It seems like a no-brainer: you'd choose adoption because adoption has a real baby at the end of the journey. And IVF could have a real baby or we could have no baby and a bunch of bills. But then I started thinking all sorts of selfish thoughts that led me towards the siren song of the catheter (almost as powerful as the pee stick) and the fertility clinic. We want to do IVF if there is a good chance that IVF will work on the first try--and by "work" we mean embryo implants, hangs on for 9 months, and the baby comes out at full term at an average weight. The decision gets muddled when you take into account that we've already had an IUGR baby and your chance of it occurring again increases.

And the way I'm dealing with this muddled decision beyond playing google med student for a few minutes tonight? But not making any decision. By folding up the blood work results and stuffing them into the lower drawer of my nighttable. And not thinking about it for the months we said we'd try on our own anyway. Because there doesn't seem to be a good reason to think about it now that there isn't a clear decision to make.

How is that for pulling an ostrich?


mandolyn said...

That's frustrating (and putting it lightly, I'm sure). Clear diagnosis = a specific reason = specific treatment and/or better understanding.

I'm sorry the blurry line didn't clear up like you'd hoped. I think you did the right thing for tonight. I know that by putting it away and out of sight doesn't mean that you won't be thinking about it constantly, but here's to hoping you have a wonderful night's sleep anyway. Happy dreams with no infertility complications. Everyone deserves that.

C said...

Oh yes, I absolutely understand the disappointment of not having a clear-cut diagnosis. I'm sorry the appointment left you with more questions than answers, and I hope the next few months serve to help you figure out what you want to do.


Plain Jane Mom said...

No one ever figured out what our infertility diagnosis was. All I learned is that "ideopathic" is latin for "doc has no freaking idea".

I'm sorry you got very few answers.

Anonymous said...

Hm, well I too know what you mean about the double-edged sword of finding something wrong. Or not finding something wrong, to look at the flip side.

But I think delaying the decision until the last moment is the right way to go. It's no doubt one of these things that needs to be processed, in the background, over time.


KE said...

I'm sorry that your diagnosis is somewhat blurry and doesn't really lend itself to a clear treatment plan. I feel a lot of frustration sometimes because our MFI is unexplained...but if they told us what the problem was and then gave us such vague treatment options I would probably feel worse. Or at least frustrated in a different way. Sometimes I think it's better not to know certain things than to know and be unable to do anything.

I hope that playing ostrich will allow you some time to process everything and make a decision. Sometimes distance can help.

serenity said...

Absolutely understand the frustration of having no clear-cut answer... we're in the same place. Brings a LOT of doubt and "what-ifs" into the equation.

I also agree with Bea that it's probably a good idea to keep it in the back of your mind for a little while. If anything, to process it. Hopefully something will bubble up through the murk and point you in a direction in which you're comfortable.

royalyne said...

I'm right there with you, hoping that I had gotten "bad" news instead of "good." Turns out all my hormones are fine, so is DH's latest pair of SA, so even though I have endo it's been cleaned out and that wasn't enough to get me pg, so am I also unexplained? When you can't identify anything as being wrong, that almost makes it worse, because it doesn't give you a way to fix it. Hello, RE, I'll be in your office Dec 6th, can't wait to meet you and do something.

I hope you surprise your dr and get pg soon, that pomegranate string means you definitely deserve it.

Anonymous said...

I am in the same boat as you (with the MTHFR dx) - but, no one has sent me for a consult with a hematologist...although I am on Folgard now since my homocysteine levels were high.

There are so many new studies come out about this, that I have to talk to my doc about it on Monday. I am not sure if I am comfortable TTC again with just taking extra folic acid, KWIM? Not that I want to stick myself with needles every day either, but I can't risk my heart and sanity with another m/c that could have been prevented either, KWIM?

I hope that, with what you do know, that maybe you will be in for a healthy pregnancy real soon!

Lisa P. said...

Mel, I have very little time to comment right now but email me if you'd like to chat about the MTHFR...