12/9/14

Factor V Leiden


Yesterday was my 29th birthday. Normally I get pretty excited about my birthday and I've never understood people like my husband who don't want their loved ones to make a big deal out of it.

I mean- please! By all means: make a big deal. ;-)

But I met yesterday with mixed emotion. I was happy and grateful for my 29th year, excited to see what my 30th year will bring, but also somewhat sad. More and more lately I have been feeling the ache of empty arms. Arie is growing older, kindergarten is approaching, and I am filled with such intense longing for another child. Already suffering from infertility, my biological clock is ticking louder and louder as I age and I fight against the fear that it will never happen.

Even so, I am comforted to know I'm doing everything I can to realize my dream of carrying a baby and I am in the best of medical hands.

After my failed embryo transfer my doctor ordered a long list of blood tests. When I went to get the blood draw the nurse actually stopped in her tracks and said, "Woah. It's going to take me a minute to enter these into the computer." I bet there were close to a dozen vials by the time she was done! I've now had every infertility relevant blood test I could have.

The results came back last week and revealed something new: I have a genetic blood clotting disorder! I got the news via voicemail and I admit I fist pumped when I heard it. I knew there was something we were missing and I am so happy we found it! I'm beyond grateful to my doctor who tested me for this disorder after my first failed FET; I've heard so many stories of women who suffered multiple miscarriages before their doctor ordered this test. While we don't know if this genetic mutation caused my failed FET (he didn't think so, but there is not enough research on the topic to know for sure), we do know that there is a possibility that if I had become pregnant not knowing about this mutation I could have lost the babies, even late into the pregnancy. I am so thankful we found this issue now so that when I become pregnant in the future, we can prevent any issues that would stem from it.

There are two forms of this mutation: heterozygous (one copy of the mutation: less severe) and homozygous (two copies: more severe). I have the less severe one. (Biology class was not my favorite in high school so apologies if I am explaining this poorly.)

I'll start taking a low dose of aspirin right away and when I do become pregnant I will have to take a prescription blood thinner called Lovonox. In the case of our next frozen embryo transfer, I'll actually start the Lovonox a few days before the transfer.

 I feel like we finally have the full picture of our infertility woes, at least as much as modern medicine can reveal. There have been a few points along the way on this journey when I have been amazed by and grateful for the medical care I am able to access: this is one of those times. Outwardly my body gave me no signs of trouble. Even with charting my basal body temperature, I had no reason to believe anything was amiss. It was so frustrating to not understand why I wasn't getting pregnant! Three diagnoses later (diminished ovarian reserve, endometriosis, and Factor V Leiden) I can say there is a certain relief that comes just knowing what the problem is. Right now modern medicine can't cure any of my diagnoses, but I am thankful that we do have a way to treat them so that I have hope of carrying a child. I thank God for the continuing work of dedicated doctors and scientists who seek to find more answers and, someday, cures. It truly is amazing!

I know I'll get some questions from women wondering if they should be tested for FVL. Of course this is a question for your doctor but from what I understand if you have had multiple losses, are of European descent, or have a personal or family history of blood clots it would be worth looking into. At fist I thought I only fit into the "European descent" category but have since found out about a family history of clotting I didn't know about!

I'd love to hear from you if you have experience with Factor V Leiden or other clotting disorders. You can leave me a comment below or on facebook so others can gain from your story or if you prefer send me a private message on facebook. Thank you in advance!

xo

20 comments:

  1. After nearly 10 years of infertility (including 3 losses) we finally discovered I had a clotting disorder as well. When I got pregnant for the 4th time, they started me on a baby aspirin daily. I was able to carry her to 35 weeks. (She's almost 9 now). During me 5th pregnancy (second child) I started myself on baby aspirin the day I suspected I was pregnant again. Again, I carried the baby to 37 weeks. My RE believes all of the infertility and subsequent miscarriages were related to the clotting issue that went undiagnosed. (I also had endometriosis).

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    1. Staci thank you for sharing! Did you go into labour early or did they induce or do a c-section?

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    2. I had complete placenta previa with my first daughter. Ended up having an abruption at 35 weeks and emergency c-section. Thankfully, everything turned out fine. Second daughter was born by repeat section (early due to contractions).

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  2. Yay for finding something out! I understand the joy that comes from actually hearing something is wrong. And I'm so glad that they have a plan going forward to help treat this problem. I really really hope that this is the answer and you guys will get (and stay) pregnant with your next two snowflakes. Now go celebrate with some more fist pumping!

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    1. Haha thank you so much!! Fist pump!!

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  3. I hear you on the fist pump! A dx is so much better than "unexplained", I think. I have the homozygous version of the MTHFR genetic mutation, and was so relieved to have found it too.

    Praying for you and your two frosty babies every day.

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    1. I'm heterozygous MTHFR and it was awesome to have things make sense when we found out!

      Interested to hear what management was suggested for you.

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    2. Yes a diagnosis is so much better than unexplained! I can only imagine how frustrating that would be. Thank you so much for your prayers!!

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  4. Also, my writing about having this mutation

    http://www.maybediaries.com/search/label/MTHFR

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  5. I totally hear you about the biological clock. It's tough sometimes to choose to enjoy the passing of major milestones when they so easily remind you that you're getting older, your child is getting older, and still no new babies. I am excited for you to have a diagnosis! I keep praying that this next round will work out and your family will get to grow!

    And happy belated birthday!

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    1. Yeo that's a good description of how it feels. Thank you so much for your prayers!

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  6. The Lovenox shot can be intimidating but it doesn't hurt as much as you think.

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    1. Good to know! I've done a number of different shots for infertility stuff so I *think* I'll be okay with it, as long as it is not as bad as the IM progesterone ones, which I've heard it isn't. :-)

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  7. Anonymous12/12/2014

    Happy birthday, Jill! I hope you have a lovely year.

    I'm still a teenager, and won't be sexually active for a long time yet, much less thinking about pregnancy, but I had a gyno appointment last year to make sure everything was functioning alright, and found out I have a hormonal clotting gene that means I would probably develop blood clots if I went on the pill. There's apparently some chance that I might have reduced fertility as well, since my mother and cousin both had multiple miscarriages, but my aunt also has the gene and she had three kids with no problems.

    Again, it's gonna be a while before this becomes an issue, so I'm glad I have a heads-up and trying not to worry about it.

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    1. I'm glad your doctor caught it before you went on the pill! I just had someone message me the other day and she went on the pill not knowing she had a clotting disorder and developed a number of clots. Kudos to your doctor for checking!

      I'm sure it is hard not to worry, but I would encourage you to remember that fertility medicine is moving so fast right now! Who knows- maybe by the time you are ready to have children they will have an easy way to treat your clotting issue. They can already do so much! There is great reason to be optimistic! :-)

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  8. Factor V runs in my family. My mom has it and successfully had 2 babies, my uncle has it and had 6 daughters, my sister has it and is currently pursuing IVF, I have not been tested and we've lost one baby (due to other complications) but successfully had 2. It is a dx that you can live with and conceive with. I look forward to your post titled "I'm Pregnant."

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    1. That made me smile! I can't wait to write that post.

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  9. I also have factor V. I have a cute lil man and carried him to 39 weeks. I had a healthy pregnancy with a natural birth. It is possible! I know it is possible for you too! Sending positive thoughts your way as your snowflake date draws near! (The Dr. I worked with during my pregnancy didn't ask me to do anything differently...I didn't even take baby aspirin. I have since done some research and before we try for #2 I am going to discuss the risk factors!)

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  10. I'm so glad I found your blog! I have Factor V as well, and my husband and I are just starting our journey to becoming parents. I'm so scared to have a healthy, normal pregnancy with Factor V, and I also Interstitial Cystitis (an auto-immune disorder that affects the bladder.) I'm so happy you have your dx, and I'm excited to follow you on your journey as well! Here's hoping to healthy pregnancies :)

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