an apple a day

After some discussion with the husband, we decided Danny should come along to my post-mthfr-diagnosis appointment. Aunt flow started her visit the day before my appointment (way to go lady parts for being consistent!) making things a little bit harder for me to handle. He met me at the doctor's office with candy, cookies, and a piece of cake from a birthday party at his work. This one's a keeper! One thing Danny also does very well is not take things too seriously. While we were waiting in the exam room for the doctor, he kept playing with the heat lamp and trying to get me to put my feet in the stirrups. In the moment sometimes it seems like he’s so annoying. But today it was greatly appreciated.

We talked about my diagnosis, what it is, and what it can mean for me. It was good for Danny to hear this straight from the doctor’s mouth. For one I wouldn’t have been able to repeat it exactly. And I felt like hearing it directly from the doctor would help him to realize it’s a little bit bigger of a deal than he might have originally thought. Unfortunately, I was a little bit more of a pushover than I had wanted to be. We didn’t do any blood tests. Nor did she think Danny needed to be tested for the mutation because the baby having it wouldn’t really affect things. She wanted me to definitely start taking a prenatal vitamin. I had found one I thought looked good and was a good deal at Costco and taken a screenshot of the nutrition label on the back to show her. She thought for ttc-ing it looked fine. She told me to start taking a baby aspirin daily. And prescribed me an additional folic acid supplement. I asked her if there was any difference between synthetic folic acid and methyltetrahydrofolate (active form of folic acid). (No, I didn’t refer to it as that in the appointment. Yes, I’ve done THAT much research to be able to call it that.) Unlike what the internet had told me, she said the only difference is the price. After I got home, I priced both subscriptions through my health insurance website. The active form is like 4 or 5 times more expensive than the synthetic.

Then we talked about how this treatment would change once I get the BFP. One silver lining that I am very excited about is that she wants to see me as soon as I get a positive pregnancy test. Many obgyn’s do not want you to make an appointment until you are 6-8 weeks along. Imagine being all excited about peeing on a stick and seeing the positive! and jumping up and down! and celebrating with your husband! but then not being able to do anything else about it for another 4-6 weeks. Boo. That would be torturous. Thanks to mthfr, I get to be seen right away. To me, that’s a perk and I’ll take it. Especially when you hear what else is going to happen thanks to mthfr. When I see her at that first maternity(!) appointment, she is going to start me on daily injections of Lovenox, a blood thinner. That’s right. Every day, Danny or I will be stabbing me in the stomach with a needle. Hu-fucking-rray. We’ll do this through the first and second trimesters. When I start my third trimester, we’ll discuss my options. I knew there was a fine line between preventing blood clots and bleeding to death during child birth. At my appointment, we learned that blood thinners can also cause an epidural to not work properly. I like paid meds. That shit aint cool. So preventing blood clots for the last trimester and before delivery gets a little more tricky.

One of the biggest reasons I’m really glad Danny was there was so he could hear the last thing we talked about, a woman’s cycle. They did a really good job scaring him during sex ed in high school because up until this appointment, Danny up was absolutely positive that a woman can get pregnant at any time, even during her period. Now he realizes that the window, while sometimes unpredictable, is much much smaller than that. Sperm can live 3-5 days inside a woman’s body and the egg is viable for fertilization for about 24 hours. Meaning there’s really only one day a month when the stars align. He still doesn’t think sex every other day is necessary to give him time to “reload,” but at least now he knows the facts. And to be fair, I learned something that Danny had been trying to tell me for a while. From being on the pill, I was so used to my period coming like clockwork every 28 days. According to my doctor, it’s completely normal for my cycle to differ in length from month to month for up to 7 days. (Had to apologize afterward to Danny for my more than slight freak out when I was maybe 1-2 days late.)

Overall, we left feeling pretty good about things. I of course went in to “research all the things!” mode. I found a good deal on baby aspirin and now have enough to last me like 2 years thanks to Costco. And we got my first bottle of otc prenatal vitamins. You should see this pill. It’s like the size of my pinky. I spent a couple of days obsessing over which folic acid I should take. I had a prescription for the synthetic filled and waiting for me to pick up at the grocery store. But I still wasn’t quite sure if there was some chance my doctor was mistaken about whether or not there truly is a difference between synthetic and active form folic acid. I did even more online research about methyltetrahydrofolate concerning how it is different, where I could buy it, and if I could find it cheap enough to afford the 4 extra mg a day she wanted me to take. I went as far as listening to a podcast of this doctor who’s a supposed mthfr expert. When I found myself listening to him rant about the blue food dye in a certain brand of prenatal vitamins, I had a come to Jesus moment.

Sometimes you just gotta trust people. The reason I originally picked this doctor as my gynecologist was because I was looking to establish a long term relationship with the hopes that she would turn into my obstetrician. I completely understand that, at times, big red flags come up and it is important to be your own advocate and be informed and a part of treatment decisions. But in order for this relationship with my doctor to work, I was ultimately going to have to trust her on these types of decisions. Especially when it came down to choosing to trust some stranger on the internet who had a big problem with blue food dye, or the doctor who was directly responsible for treating me. This was going to be an even longer and more stressful journey if I didn’t trust my doctor. So I went to grocery store and picked up my way cheaper prescription for synthetic folic acid supplements.

Now I compare myself to Dr. House. I spend my days popping pills. Specifically, 2 folic acid tabs first thing in the morning, 1 more at lunch, and 1 more at dinner. Then 1 baby aspiring and 1 prenatal (that also contains folic acid) at bedtime. That’s 6 pills a day, 42 pills a week, and approximately 180 pills a month. Taking the prenatal before bed works well. I don’t have any side effects. I hide everything when anyone comes over to keep any sleuthy family members from figuring out our plans. And every time I find myself starting to complain about all these pills, I remind myself that this is nothing compared to daily injections in my stomach that I have to look forward to when(!) I get pregnant. Perspective.

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what the mthfr

My doctor's office finally called with the test results. My doctor's appointment was last Monday and she had said it would take about a week. So when Monday, Tuesday, and Wednesday came and went, I started to freak out get a little anxious. Luckily I had a rare busy start to the week at work so it wasn't always at the forefront of my mind. But sitting in the Student Center on my lunch break eating Chick-fil-a and listing to an NPR podcast about gun control (the perfect balance of southern liberalism), I finally got the call.

I tested positive for the mthfr genetic mutation.

They wanted me to make another appointment to comeback and discuss the results and what happens next. Part of me was almost glad to be in a public place when I got off the phone. It forced me to swallow that lump forming in my throat, blink away the tears forming in my eyes, and just overall stop myself from slipping into an afternoon of full-on feeling sorry for myself and crying. There was a fleeting moment where I decided I would the scenario played out in my head to go back up to the office and ask if I could take the rest of the afternoon off so I could go home and cry about how horrible my life is while my puppies console me for personal reasons. But that wouldn't have worked. We're still keeping all this baby talk top secret. I'm constantly afraid of raising suspicions. What would I have told my boss? That while she's in the midst of fighting HR to give me a promotion, I'm plotting to get knocked up and take 5 months off for maternity leave and now I'm upset because I just found out I have this stupid genetic disorder that no one's ever heard of but can seriously complicate things so I need the afternoon off to cry about it? Not sure that landing would have been much smoother than the Hindenburg's.

While we're talking about horrible, fiery crashes, I think one of the things that makes ttc-ing so dreadful grueling draining cruel trying (pardon the pun) is that many women have been on birth control the better part of a decade. Our hormones have been on lock. What happens next is the perfect storm of out of control hormones, emotional roller coasters, and frightened hiding in the corner alarmed husbands who have no idea their wives were capable of displaying such borderline bipolar behavior. You take us off hbc (hormonal birth control), and all of the sudden we're experiencing these huge peaks and valleys of estrogen, and progesterone, and all the other hormones that I should know more about while at the same time going through ttc, staring down our fertility and all the setbacks that can come with it. Just as timing should have it, my handy-dandy tracker app says only my second af since getting off hbc should come tomorrow, so I know I'm holding back the pms-ing. I can barely cope with one of those two things and you want me to embrace both crazy hormones and the excitement and setbacks of ttc at the same time? And you want me to do it with grace and poise and in secret? Que old joke about having beach front property in Arizona to sell you. Though, I will say that at least this time I handled things pretty well all things considered. <pat, pat, pat> Only minor amounts of sleep have been lost and tears been shed. I think chocolate cake is in order. And I will credit you, my completely anonymous, non-existant readers, for indulging my therapeutic ranting typing.

So what's next?

Well I have my follow-up appointment on Tuesday. Pinterest now allows you to create secret boards. My secret baby board has been filling up quite nicely with pins. Now I have a secret mthfr board. My obgyn does know about the mutation, but according to the interwebs, it's still a fairly new diagnosis and there is very little consensus on how it should be treated. Because many women are not diagnosed until after several miscarriages, I wanted to be as informed as possible about the what tests, medications, and preventative measures are out there now before I get pregnant. The dreaded mc would be very hard on my husband and me. I see this research as taking charge of my body! Huzzah!

What I've learned so far is that it wouldn't be a bad idea to have my homocystine, B12, progesterone, and folic acid levels tested. I also want to know what she thinks about having Danny tested. All of the problems I'm now predisposed to stem from not being able to metabolize folic acid. This can cause elevated homocystine levels, a vitamin B deficiency, and low progesterone levels. And those lovely things can cause blood clots and miscarriages (among a host of other bad things that just don't relate to pregnancy).  I'm going to ask her about getting on a special type of folic acid supplement. Apparently, it used to be common just to prescribe synthetic folic acid like Folgard. But my body has trouble metabolizing folic acid easily, let alone the synthetic kind. There are several new prescription medicines out there called Neevo DHA and Metanx that contain active forms of folic acid that are much easier for mthfr-ers to absorb. Your progesterone can also be low from a vitamin B deficiency, which can affect the follicle during the luteal phase and contribute to the risk of miscarriage. Finally, I'll talk to her about what sort of blood thinners I should be on now, while ttc, and when I get pregnant. (That's right when dammit.) From what I've read, she'll probably suggest daily baby aspirin now and we'll see about the Lovenox/heparin injections later.

I'm just trying to keep all of this information straight in my head. When I see my obgyn, I'm going for "conscientious yet informed patient" who really cares and is intelligent enough to talk medical jargon to some extent. I'm hoping I avoid being one of those annoying patients who comes off thinking she knows more than the doctor does. And with my shyness, I'll also have to push myself to speak up and not let all this research have been in vain. There's something else I have been too shy to tell her about, but we'll leave that for another entry. I'll spend this weekend researching and pinning some more and deciding whether or not my husband should come to the appointment for moral support and so that I don't have to try to accurately repeat everything my obgyn says.

Until then, chocolate cake.

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our first wait

This week has been my first taste of the waiting game and I'm not very crazy about the taste. I had my preconception appointment with my obgyn on Monday. As soon as I told her that my sister had been diagnosed with compound heterzygous mthfr, her change in demeanor really scared me. She wanted me tested right away and even said we should use condoms until we find out the results. The test results will be in at the beginning of next week. I've been trying not to think about it, but it's been at the back of my mind all week. These test results could make a big difference in our experience ttc as well as during pregnancy.

It has been really helpful for me to keep myself in a positive frame of mind. I've told myself and my husband that even if we did learn I have it too, it's not the end of the world. So I might have to take a baby aspirin every day or get shots of Lovenox in my stomach like my sister. (This will reduce the risk of miscarriage-causing blood clots.) But at least we'll KNOW exactly what the issue is and how to treat it. That's way more than many women out there ttc can say.

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