my drug habit…

I went in for my last (hopefully) blood test for a while.  It was to check my homocystine (?) levels, which is realated to the MTHFR.  I’m not sure what will happen if it comes back that I have that, too…more meds?  Don’t know.  Anyway I’m really hoping that we’re now at the point where I can get pregnant and sustain it all the way through.  Sadly it’s taken 3 doctors, 3+ years and 2 lost babies to figure this all out.  I’ve learned that I need to be more proactive about my own diagnosis and fight for the things that I want.

When I first went in to see Dr. Freakin’ Awesome (the MFM doc) I was asking him all kinds of questions about baby aspirin and lovenox, since I know so many of you ladies have been put on one or both of those.  At that point (rightly so) he didn’t think it was necessary, since we hadn’t run the blood work yet.  I was kind of just feeling out what might be used for some treatment.  Now with the MTHFR diagnosis he has put me on baby aspirin, plus the extra folic acid.  I’ve been doing a lot of “research” (by that I mean, Dr. Google has been consulted on this), and have found that most women diagnosed with MTHFR are then put on the baby aspirin, extra folic acid (on top of a prenatal) and then when they become pregnant are prescribed lovenox or heparin.  I’ve found this article, that I have now printed off to put in my files.  If (when…) I get pregnant I will be using it to convince whatever doctor I have at the time to put me on one of the two of those.  I hate needles – really hate them, but whatever it takes ya know, as I’m sure you all understand.  I also stumbled across a blog called The Expecting Father – MTHFR gene mutation and pregnancy.  It’s written by a man who’s wife had recurrent miscarriage (2) and then was found to have the MTHFR gene mutation.  When she became pregnant again she was given lovenox and delivered a healthy baby boy.  They have since had another baby boy just a few weeks ago with the same treatments.  I also know my dear blog friend K of Waiting for Sunflower has used the same treatment and her little guy should be coming in the next few weeks!!  You can be sure I’ll be very proactive about getting this same treatment for myself.

In other news, I’ve scheduled a consultation appointment with a new ob/gyn (for May 24th).  I found her by searching online (I know, kinda scary) – but she was reviewed on Yelp! and all of the reviews were 5 stars!  She is covered by my insurance as well.  I’m hoping to go in to the meeting with all of my medical records and just be very straight with her what I want.  I’m hoping she has some experience/knowledge of infertility issues, specifically PCOS and now MTHFR.  She sounds like a great doctor, but if she can’t meet my needs, I’ll be looking for someone else.  I’ll let you know how it goes.

Okay, now on to the actual reason for this post!  I wanted to do a show and tell of my new drug habit (sorry this beginning part kinda got away from me).  First off, I’ve turned into an old lady – yup, I bought a pill box.  I figured though if I need a pill box to keep track of everything, it may as well be a “hip” pill box, so this is what I got:

It’s individual canisters that screw together to make this stack.  There’s an extra lid so if you’re going on vacation, you can just take the days you’ll need.  It’s pretty fun, and allows me to see if I’d remembered to take my pills for the day.  I just put my morning dose in the jars.  I have an alarm set on my phone to go off to remember to take my Metformin at lunch and bed time.

Here’s a shot of the bottles of pills:

The big jar is the pre-natals (some generic brand my insurance company picked out…).  The next generic looking jar is my Metformin.  The yellow is the extra Folic Acid (I’m supposed to take 1 mg a day, but they only came in doses of 400 mcg, so I take 3 of those) and the smallest jar is the “baby” aspirin, which isn’t for baby’s at all, they just call it that.  Though it is chewable and orange flavored!

So the grand total for the day is 8 pills: 6 in the morning and then then other 2 through out the day.  Here they all are!

Nice, huh?  The prenatal is a very vibrant pink.  There is even a warning on the bottle that it may turn your pee colors for a while…yeah, really.  Luckily I didn’t get that side effect!  I don’t know why they had to make it so pink!

That’s my update for now.  Hopefully my results will come back soon and I know for sure the full treatment for me, and hopefully, it’ll work!  Oh…and btw, I’m on CD-21, and no sign of ovulation.  My temps have been all over the place throughout this whole cycle.  I forgot to do my OPK this morning.  Might do it tonight and see what happens…

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Okay…so, I was just getting ready to hit PUBLISH and my phone rang.  It was Dr. Freakin’ Awesome’s office and my blood work came back normal!  Yay!  So I just stick with the above until it works!

more info on my mthfr…

Okay, got the test results in “writing” back from the doctor.  Here’s what it says:

“This individual [yours truley] is homozygous [I have 2 copies of the mutation] for the C677t mutation and neagative (normal) for the A1298C mutation in the MTHFR gene.”

So the fix is to add 81 mg of Baby Aspirin (the chewable kind, yay) and 1 mg of Folic Acid to my already growing drug regimen.   Like I said in the last post though, anything to get my baby!!

I’m also being sent in for one more blood test, Homocysteine Level.  Basically to see if I have B12 or folate deficiency.

I’m happy with this result, because it seems fixable, but 2 things kind of scare me about it:

1) Apparently the MTHFR gene mutation can tie in to vascular disease.  I’m now in 3 high risk groups for a heart problem (women, obese and MTHFR gene mutation).  Great.

2) I’m absolutely TERRIFIED of blood clots.  Seriously, I’m constantly worried when I’m in a car for too long I’m gonna get a clot.  My grandpa and aunt both in the past year have had blood clot issues and it scarred the tar out of me.

Anyway, that’s what’s going on in my life.  One fun thing with my blood work, a copy of all my genes was in the envelope!  Now I have pictures of my DNA…it’s pretty interesting!

Oh, forgot to add this…an interesting article I found on MTHFR and Miscarriage.

dr. freakin’ awesome & answers…

Have I mentioned how much I love my MFM doctor?  I really do!  He’s been amazing to me…I’ve only seen him once, but when I have questions or tests come back HE calls me personally!  Can you imagine that??  A DOCTOR that makes phone calls with test results???

Therefore I dub thee: Dr. Freakin’ Awesome!  From now on, that shall be how I refer to the MFM doc.  I wish I could have him for all of my ob/gyn, infertility, MFM related appointments…

Anyway, he called me this morning on my way to work (DH was driving luckily so I could take the call).  My über blood work came back (really quickly too, as I though it’d be late next week before I heard anything).  He said everything came back normal except the MTHFR – basically it means that my body doesn’t hold on to folic acid (which is a tiny bit important when trying to create and sustain a life…).  It also can cause clotting problems that can lead to miscarriage.  He thinks however (and he told me this when I met him the first time) that my 2 losses had just been bad luck and it didn’t seem there was anything particular that led to the losses.

He’s going to send me in for one more test…some sort of enzyme.  I don’t recall the name (I’ll tell you when I get my requisition form).  He’s also giving me copies of ALL of my test results, in case I ever move or get a new doctor so I don’t have to repeat the tests!  Did I mention how freakin’ awesome Dr. Freakin’ Awesome is??  Cause, well…he is!  My DH is heading down there after lunch to get my results and the blood work order form.

So…what is the next step?  I will be adding a folic acid supplement to my daily Metformin and Prenatal.  Also I will start taking 1 baby aspirin a day.  So that’s a total of 6 pills a day!  Oh well…if it gets me my baby in the end it is absolutely worth it!!!

Can I just tell you all how happy I am right now???  It sucks that there is so much wrong with me, and that it’s been a constant battle with my body and doctors these past 3 yrs, 3 mo – but now there is a better answer, and a way to deal with it that just may work.  Now with the combo of my Metformin (so I am FINALLY able to ovulate on my own) and the Folic Acid/baby aspirin (to keep my baby once s/he is concieved), this just may work out!!  A huge swell of hope has hit me again, and it was MUCH needed!!

I emailed my best friend yesterday because I’ve been having such a hard time the past month with all of this.  Baby announcements, births, preggo bellies everywhere and nothing for me but empty arms where my 2 little ones should be.  It hit me hard yesterday…if you’re on twitter, you probably saw my Infertility Pity Party tweets all day…it was a rough one.  But, now today!  I have hope again, something which is desperately needed.  This just might work…

okay, I’m here…

Hey all…I hope you’re still around. I’ve been taking a blogging break, but I’ve still been reading all of my IF blogs daily, sometimes more! I just needed a break from thinking about my own IF for a while.

So, here’s where I’m at. Our last IUI failed. That was the 3rd one after we lost Zippy in March. They say after 3 tries, it’s time to move on to something else. Not only was it our 3rd failed IUI after miscarriage, but I got the news of the BFN 2 days before my due date would have been for our baby. As you can imagine, that has launched me into a pretty spectacular funk. I’m still not out of it. I do my best to put on a happy face throughout the day, and it works, as long as I don’t for a second let my mind wander. My “happy face” mask has to extend also to my brain or it all come crashing down again. Even typing this post is difficult because I’m allowing myself to go “there” – you know, that place where all you can think about is your IF failures and the “what might have been”s. I’m there. I don’t want to be there.

I’m sick of this whole journey. I know it’s building character, and making me stronger, letting me know how much I can deal with and still survive, but if it’s all the same, I’ll give all that character building back if I can please have my baby. Thanks.

I don’t want to deal with this any more, but there is no way out. If I want a child I have to deal with this, and it just so isn’t fair. I’m surrounded by babies, but I can’t have my own and that’s all I want in the world.

The worst part is, we’re at a point now where the only thing we can do is the old fashioned trying to have a baby. We’ve emptied every bank account, begged money off friends and family, taken out loans, gotten as many grants as possible. We’re out. Adoption can’t even be a possibility because the cost is so prohibitive. I’ve got no hope that I will EVER have a child, let alone anytime in the near future. I’ve tried everything I can think of. Thought about cashing out my retirement account that work has for me, but I really can’t do that unless I were to leave my job. That’s another possibility, get hired somewhere else. The state of Illinois is one of the few states that requires jobs to provide IF treatment as part of the Health coverage, that is if you don’t work for a religious institution, which I do. So, if I were to switch jobs, not only would I probably get paid more (which would help) but I’d have IF coverage. But – welcome to our wonderful economy! No one’s hiring. Also I have to worry if it’d be a “pre-exising” condition that wouldn’t be covered anyway. My next option was to get a part time job for nights and weekends and save up for IVF. That failed too – I applied to about 10 places and never heard back from any. I really feel like the world is conspiring against me becoming a mother. I really do.

I don’t know what to do, or where to go. I feel like a boat lost at sea, drifting aimlessly hoping to crash into land, but I’m so far away from the shore I probably won’t survive the journey. Yup, that’s hopelessness folks!

However, my stupid mind got to thinking today. Maybe Baby? was talking on her blog about Metformin and linked to Birds and Squirrels about articles on Metformin. I’ve heard you lovely blog folks mention this med before, but I didn’t know what it did or why one would take it. Turns out, for women with PCOS, it can help regulate cycles and even help ovulation! It has a good percentage to help PCOS women get pregnant even! So of course, I start plotting a new plan. Get my doctor to put me on Metformin, maybe discuss taking baby aspirin, I’ve heard that helps too. Maybe I can even get insurance to cover the drugs some how, since it’s a treatment for a condition I have? I don’t know…will need to talk with doctor about that…then, I guess I could give it a couple months of trying natural? Or, maybe one more IUI shot? Of course after emptying out every ounce of cash we had, we did have another break on the financial front recently that could help for one more try if we wanted to go there. This is giving me things to think about, and actually the first glimmer of hope I’ve had in quite a while…don’t read to much into that though. That glimmer is still miles off in a room full of darkness, but at least it’s a pinpoint of light. I’ve not had that.