Sunday, September 27, 2009

The results are in...

When I met with my new OBGYN, she set up an appointment for me with a perinatologist to find out more about the MTHFR gene and how it might be affecting my pregnancies. I lost that pregnancy the next week, but she wanted me to keep the appointment with the specialist.

On August 20, we went to the perinatologist expecting to meet with them and talk about testing. I assumed that we were going to work together to form a game plan to successfully make us a baby. It didn't quite work out that way.

They took us into an office to speak to a genetic counselor. I'll be honest. I didn't like her. We had to initiate the conversation and she kind of acted like, "What is it that you want from me?" And I was like, "My doctor told me to come and here I am." She had the test results in her hand. She said that, yes, the MTHFR gene definitely could cause clotting and loss of folate, which could lead to a miscarriage. However, they had ran some other test at the same time and those results led them to believe that this was not the cause of the miscarriage.

We asked what that meant and she said that, essentially, we were back at square one. It could be a thyroid problem, diabetes, etc... But, they tested me for all of that after the second miscarriage and the results were all "negative", I told her. She said the tissue sample that they tested after the D&C was thought to be female, but they could not determine if the tissue was mine or the fetus'. Again, I'm now mad at my previous doctor because she made it sound like we knew there was nothing wrong with me because all the test results were negative.

So, this chick said there was a possibility that even if Roy and I's chromosomes were fine by themselves, that once they got together to make a baby, something wonky happened and they became unbalanced. If that were the case, then 50% of our pregnancies would end badly due to chromosomal abnormalities. This was all beyond me, so she pulled out a chromosomal chart that didn't help at all. Roy seemed to get what she was saying, so I just nodded. Her suggestion was that we both undergo a high resolution chromosome scan to see if this was the problem. She said it was a $1500 test, so we should check to see if our insurance would cover it.

Next, she brought in the doctor, who didn't even introduce himself. He sat down and propped his feet up while he glanced at our chart. He said that because of this MTHFR gene, I would need to take a baby aspirin and folate pills everyday for the rest of my life to help prevent heart attack and stroke, aside from helping with the next pregnancy. He said he'd like for us to wait 3-6 cycles before we try again. I asked if low progesterone might be a cause for the miscarriages. I'd had low progesterone with the first two miscarriages and my doctor had put me on a supplement to help. I asked him if I should just start taking that now, as well. He said, "That is something you'll have to ask your doctor." I was like, "Wait. Aren't you the baby doctor specialist?"

Then, he looks up and says with absolute certainty, "Yep, I think if you just start taking those, then you should be fine," and then he stood to indicate that we were done...after 3 minutes with us.

I stammered, "So we don't need to have the chromosome test done, then?" And he looked at me like I was crazy and said, "You've had three miscarriages. You definitely need to have that test done." And I looked at him like, "What the hell?!" If a baby aspirin is going to solve my problem, why do I need to do this test?! Why did I even have to come here?! Why couldn't a doctor have told me that after, say, the first miscarriage? Or maybe even the second? "Hey, it won't hurt anything, so why don't we just go ahead and have you take this and see what happens? We don't know what the hell is wrong, but this just might fix it."

I started crying. I was so frustrated and I felt like these people weren't taking my problem seriously. To go through three of these horrible experiences and then to have him come in there,glance at our life's story and announce that a little over-the-counter pill was going to solve everything, without even a small measure of sensitivity or an acknowledgement of our suffering, blew me away. I should be excited that we had a "cure", but I didn't trust his certainty one bit. I remember my doctor telling me with absolute certainty that I had experienced "my one" miscarriage and the next pregnancy would be smooth sailing. If he was so certain, why the stupid test?!

Anyway, I walked out of there pissed off and hoping that I would never have to see those stupid people again. You would think that specialists in their line would have practiced a little more compassion in their delivery. Whatever. I cried a lot that day. Apparently, I only heard the "wait 6 months" part, not the "3-6 months" part. I was pretty darn upset about that. I hadn't even thought to ask why. Roy was like, "If we wait 6 months, that will give us another December baby. Swell."

I called our insurance company and after 10 phone calls back and forth between them and the perinatologist, found out that insurance would pay for the test, so we went in on August 28 to get our blood drawn. The receptionist that set up the appointment had never heard of the test and didn't know if we needed to fast for it. When we arrived, they only had me down to test, but we assured them that they were supposed to test both of us. Mine went smoothly, but poor Roy, who gives blood regularly, got poked multiple times and bruised repeatedly because the nurse couldn't tap a good vein. She actually walked away at one point because she was so frustrated. It took her 20 minutes to get a vial of blood from him and ended up having to go through the top of his hand.

We were told it would be at least two weeks to get results. Frankly, I was going to be surprised if they actually ran the test correctly. On September 18, they called to tell me that we "are both fine," in a sunshine-y tone.

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