I'm 40. It happened Sunday, and overall I feel much the same.
A couple of exciting (read that ironically, please) things have happened since the last post.
First, I got some of the results back from the gallon of blood that they took last week (I had been sent in for a lot of immunological testing and the Boy and I both were sent to get our genetic karyotype). Here's where things stand:
- the fucking nurses (sorry, usually they are quite nice) forgot to check the box for my karyotype, so I have to go back and get more blood drawn. Suffice it to say, I am not amused, as I am intending to start another cycle around the 25th, and these results could be USEFUL and now may not be back in time. AAAArgh.
- I apparently have a MTHFR mutation. Fan.fucking.tastic.
I only spoke to the RE briefly, so didn't get all of the details (which part of the gene, hetero or homozygous), but have emailed her to follow up. But on the upside, my homocysteine levels are normal. She is not concerned about this and just recommended that I up my folic acid to 2mg. She said she'd be more concerned if I had recurrent pregnancy loss, but I seem to fail at the implantation stage, and in her view there is not much to do there.
Views? I know a lot of MTHFR mutated women out there are on regimens of vitamins (folic acid, b6 and b12), baby aspirin, lovenox/heparin or some combination thereof. For implantation issues, should I be discussing any of this with my RE? And does the mutation type matter? Homocysteine levels? Dr Google is annoyingly unhelpful here.
Other reasons that this week has been a bit of a sucky one? Remember that heartfelt email that I sent to my friend hoping that she would "get it" and be a good source of support? Four days later I got back the lamest shit I could have possibly imagined:
Hi there,
Haven’t watched the video yet but promise I will. Just a few quick things about below. Please don’t worry about “negating” my experience. In our society, it is validated every day, deservedly or not. And, if you don’t speak frankly about how you feel, who will know? And how will we know which pep talk to give or not give? I used to fight with my parents when I’d complain to them about something in my world and they’d say “Well, why don’t you do X?” or “Have you thought about trying Y?” Finally I just had a major melt down and said, “You know, I’m not telling you this because I need you to help me fix it. I can do that myself. I’m just telling you this seeking a little empathy. Sometimes, I’d just like to hear “Oh, that must really stink”. Because you belittle me by trying to direct me to solutions that I’m perfectly aware of on my own.” Thus I stopped seeking empathy from my parents because they were incapable of it. Remembering my own experience, I try my best to be attuned to the difference between empathy and problem-solving. Not that I always get it right, but I do try.
OK – now I’m going to watch the video. Toodles –
Xoxo
And so while I am pleased that she feels that she thinks she is empathetic, I'm really getting none of that. And that sucks.
Her follow up email after watching the video?
"The video made me weepy too, and I couldn't help but notice that she had the same bathmat that we got from Target."
Seriously? That is the shit I get back in response to my email? I don't even know where to start I am so hurt/ angry/ shocked/ saddened. I just feel so disappointed in her -- she is completely unable to get it, and I thought I was making it so easy.
I've already decided to cut my losses here and not come back to her with another follow up. But I'm also not calling her any time soon. I guess I should have just left well enough alone, but instead I feel worse than I did when I started: she validated my isolation.
I guess you guys are it. In addition to your views on MTHFR, I could use a reminder that I am not the only one stuck in this circle of hell.
You are not the only one stuck! I don't really know about the MTHER mutation but am interested as I see it blogged about a lot. Although, every time I see the initials I think it stands for m@ther f*cker. Which kind of fits... My RE didn't bring it up at all, just my old eggs.
ReplyDeleteHang in there. Lame on the nurse forgetting to check the box. I have a friend who has a seriously sick baby, that they had to do a spinal tap on. The lame-o hosp forgot to SEND the sample for 2 weeks AND it takes 2-3 weeks to culture out the test. Talk about frustrating.
I'm sorry about your friend. I find lots of people make light of my situation, I think because they are uncomfortable. It's lame. Hang in there!
I have MTHFR (one copy; is that hetero?); my RE has me on Folgard. I also take Lovenox, but that's due to history of antiphospholipid antibodies and RPL. I'm so sorry your friend isn't being what you need her to be right now.
ReplyDeleteUgh, bath mat really?? I once had a friend who when I complained about IF meds sucking tried to related by telling me how much she hated breast feeding....um, what? We are here for you.
ReplyDeleteAgh. Sorry about the bathmat comment and the genetic test result. I don't know anything about that mutation, but I do know that it really really sucks when someone belittles a conversation by ending with some petty reference to fluff. WTF? to be generous, you could blame it on lack of sleep and just not go back for more.
ReplyDeleteI am so appalled by your friend's response - clueless!!!
ReplyDeleteI'm sorry about the MTHR - I know very little about it but it seems to be mentioned a lot and Dr. Lovely won't test me for it because apparently the test costs like $1000 here??? Instead, he just prescribes extra folic acid every other day in addition to my daily prenatal.
You're not alone, my friend. I am here with you. And I like knowing you, despite the horrible circumstances under which we've met. Thank you for being there for me - I can't tell you how much it means to me to read your comments. It looks like we'll be cycling around the same time - looking forward to keeping each other sane through it! ((hugs))
Love,
Maddy
You have a lot of company here, in this circle of hell. I'm sorry about your friend. There obviously wasn't malice there but...just a lack of comprehension, which is almost as bad:( It's an awkward message and not what you needed to hear. Sometimes I think that it's like a language - and if you don't really understand it then speaking it is really difficult (and can hurt the ears of those who are fluent in it).
ReplyDeleteAnnoying about the karyotyping but I think you're smart to get that done quickly. I'm trying to remember how long it took for my results to come back...maybe 2 weeks?
As to the MTHFR, it's a very frustrating thing on several levels. Primarily, it's frustrating because the mutation is a relatively new discovery and doctors don't agree on what it means. It's generally thought (though, there really hasn't been that much research) that the worst form to have is homozygous C677t, and so a lot of doctors will dose accordingly (i.e, more folic acid if you have two copies). There is a correlation between MTHFR and RPL for sure but not all MTHFR carriers have miscarriages. In fact, from what I understand most do not. It's good that your homocysteine level is normal. The one word of caution I would give: make sure they keep testing this at intervals. Mine was normal and then a year later had shot up. But I think that the vast majority of docs would treat it like your doc - in the absence of miscarriages, folic acid. One thing you may want to ask, though, is about the baby aspirin (though, doctors can't even agree on THIS).
congratulations on turning 40! I'm following you in about 3 weeks. We keep putting off the karyotype testing. I'm still a little confused about what it will really tell us - whether we'd do anything differently. So, will be interested to hear how yours all comes out and what you decide to do. Good luck and hang in there!
ReplyDeleteI can't believe she focusee on the damn bathmat?!! Ugh.
ReplyDeleteThat first email gave me a little bit of hope that your friend maybe just maybe would have a clue (at least she realized that you would need some understanding beyond well-meaning assvice), but she certainly BLEW IT with the next one. Oh my GOD, seriously?! The bathmat?! What the hell was she thinking?
ReplyDeletewelcome to the m*th*r f*ck*r club. i'm sorry you to join us but welcome you all the same. i'm homozygous for the bad one: c677t. i almost died of a heart attack when i was diagnosed with this the 2nd day of stims for my ivf. my (old) RE said it was no big deal (um, then why test me for it ahole), so prescribed me folgard (extra folic acid, b6 and b12), twice a day. doing my own research, i became convinced that i needed lovenox (low dose blood thinner) or at the very least baby aspirin. so i proceeded to make appts with 3 mfm's and 1 hematologist to get their take. all 4 dr's are supposed to be the best in the city. and they all resoundingly told me that there's no confirmed link between mthfr and miscarriage IF your homocysteine levels are normal, which mine are (having them tested again as we speak). i asked each of them "what would you do if i had had 4 miscarriages and was sitting in this chair?" and they all said "still no lovenox".
ReplyDeleteat the time, that appeased me, but i started taking baby aspirin on my own anyways. and i'm still inclinced to break into the local pharmacy and steal their lovenox supply. my new RE at cornell said he agreed with my baby aspirin idea, but that lovenox wasn't needed. i'm still skeptical on the latter, but what can i do??
my sister had no problems in her pregnancy, and she is at the very least hetero for c776t. she got tested in her last month of pregnancy, bc i had just been diagnosed. she forgot to call in for her results so is doig that now.
i've stalked babycenter.com like crazy and there are a zillion women their who have mtfhr and some of them have no problems, buts lots do and the majority of them are on lovenox.
ps - can i ask you who your RE is that ran all these tests on you? my old RE only picked 2-3 tests on my long list to run and i'm still pissed. if my new RE doesn't agree to run the rest, i'm gonna flip. if you can email me at siennac456@gmail.com, i'd really appreciate it.
I am in the inner circle of hell today, my friend. I'm not up on my dante, but if there is a circle in which you get skinned alive, that would be a better circle (mmm, maybe not, actually).
ReplyDeleteYour friend's comment about the target bath mat floors me. That video was amazingly beautiful, and your friend was LOOKING AT THE DECOR? Sheesh. Definitely not reading 'empathy' there.
The bathmat. She commented on the bathmat. I'm just..stunned. Of my two closest friends, one has been great about the IF stuff, while the other has just failed and failed, despite being a good person. Some people just can't seem to wrap their heads around it, and, like you say, validation of your isolation is all you get.
ReplyDeleteHey, happy birthday, kiddo! I'm sorry it comes with so much baggage and in such stressful times. I hope this year will be kind to you--you've earned it.
The bathmat. Incredible. I'm so sorry for your friend's cluelessness.
ReplyDeleteHello, I found your blog on a google search. And well I hate to say that I am in the same boat. MTHFR homozygeous, Good luck with everything. This is a tough journey....
ReplyDelete