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My hematologist, etc

September 10, 2009

I saw the hematologist today and it took him over an hour to see me for what was a two minute consultation. He said I’m fine. Some stuff that was positive before is now negative though he doesn’t know why the change and he said that my miscarriages are not because my clotting issues. He said lovenox is pointless for me. I don’t know if I’m reading too much into this but these are the three areas that still showed up as issues, and his don’t worry about it mantra just isn’t sitting well with me:

MTHFR: This is a gene associated with higher risk of nueral tube defects and miscarriages. I have one mutation (C677t). Dr. F said since its only one mutation not two he’s not concerned. But- there are doctors who recommend lovenox and increasing folic acid and B6 and B12 for one mutation. Plus, Jack could have a MTHFR mutation, which when combined could give me two. He said there are no known ways to treat MTHFR. But, there are! Maybe the effectiveness is in question but there is a protocol.

Factor VIII Activity: Normal is 50-150. I’m 164. He said its okay since this clotting factor rises in pregnancy, except the lab results he gave me say these numbers may be elevated in late pregnancy. I’m hopefully six weeks today so how is this elevated due to pregnancy?

Plasminogen Activity: Normal is 78-130. I’m at 150. He said this nixes the Factor VIII so no worries.

I’m going to talk to my OBGYN about this but Dr. F said he’d tell my doctor I don’t need Lovenox. I strongly disagree and hope she maintains her stance. The veins and arteries the uterus are often microscopic and so clots that would be inconsequential to me would be huge to a growing fetus and if this can save this pregnancy I am taking it.

(The random aside):You might have noticed in my many blog posts about my friends- it seems I’m not having the best of luck. We were having a small dinner at our house on Saturday and four people are bailing TODAY out of eight people. We thought about who we could invite now and could think of no one. While I believe that quality matters in friends, not just quantity it makes me sad that I have no one else I want to invite. I could definitely be part of the community if I wanted but all the girls I know talk about are things I don’t care about and, this is just me, but I don’t feel they are genuine and what’s the point of being friends with people who aren’t sincere. I am sure I have a ton of flaws that people could point out, but one thing I am is a genuine and sincere person. I don’t fake it, and if I care about you and you hurt me I can’t get over it. I’m not sure if its hormones making me weepy, but I just feel sad. I quit facebook because I got tired of the constant birthing announcements and updates on every little thing junior did, but quitting facebook is akin to social suicide these days. I’d like to think a good friendship will survive deactivating facebook but it turns out I have few such friends. Add to that not attending baby showers for about a year- yeah. IF killed my friendships it seems. And today, this makes me sad.

(The self check): After that huge pity party I threw for myself (thank you for attending) I need to get a grip. Susan at sprogblogger does a daily days of grace list on her blog and I think I need to do a similar thing just to help myself get out of my funk, so here goes:

1. Having dinner with Jack at my favorite steakhouse to celebrate my “retirement” from work today.
2. I no longer have to work at my toxic work environment.
3. I can sleep in tomorrow and not feel a lick of guilt.
4. Today, I am six weeks along and as of now, to the best of my knowledge, I am still the P word.

Okay, that helped. Thanks for listening.

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11 comments

  1. Yay for the grace list! Enjoy your time at home – what a relief! Really pulling for you for this pregnancy, can’t wait until you can feel settled and reassured, i know there’s still some road to travel until you get there. Have a great dinner – fewer friends is better more quality time with everyone and more food!!


  2. yay for early retirement!!! That is awesome!

    I have read so many stories about lovenox helping recurrent miscarriers but the doctors cannot point to exactly how or why. I am sure that makes most of them crazy – being unable to see the how or why.


  3. 6 weeks along is good! i have friends but since i started working full time and got towards the end of ttc/beginning of my pregnancy i have seen them less and less, i don’t really know why but it’s true. i agree with quality over quantity too, there are a lot of boring people in the world, i know it’s not a nice thing to say but it’s true. all those boring people probably think i’m boring!


  4. I’m sorry you’re not getting good answers from the hematologist, but glad that you’re pursuing it further with your doc. There’s just so much we don’t know about seemingly “causeless” miscarriage, that it seems worth the extra money/pain to continue on something that won’t-hurt-might-help. Bummer about your friends – yeah, I’m a reluctant FB person – because I’ve moved so many times, I’ve lost touch with a lot of people in my past, so it’s cool to have a way to contact almost all of them. Of course, it’s also freaky and disheartening, so I never spend any time on there, and so miss an awful lot of what the site is about. As far as IF killing your friendships – I’m a HUGE believer in quality over quantity. The ones who stay by you through the bad times are your friends. The others are fun acquaintances whose company you enjoy, perhaps. I have tons of acquaintances and very few friends. Picky is ok, I think.

    And thank you for the shoutout. I started doing DoG when I realized that my blog was nothing but a listing of complaints, and I needed to rework the way my brain approached the day. Keeping an eye out for 5 good things reminds me to expect good things, even if they’re small things, and it reminds me to pay attention and not take anything for granted. It’s been enormously helpful on a day-to-day basis, just keeping my head on straight. Best self-help thing I ever attempted. I think I’ll try to do it for the rest of my life, and I’ll probably encourage my kid to do it as well. I’m happier for it, and that’s a pretty impressive result, given the shit that my life has been this year.

    Take care, I can’t wait to see your first US picture. I’m pulling so very hard for you and the little one!

    (And congrats. on leaving the job. You are doing what I wish I could do, and I hope you have a marvelous time! Yay for no toxic work environment!)


  5. Oh gosh I am so sorry about this whole “not trusting your hematologist” thing. In away, I don’t like it when I know more than doctors because if they say one thing wrong, their credibility flies right out the window for me. And if I know more than them it’s always a struggle to convince them that I’m right. And scary because I know I HAVE to convince them for the sake of my health and my future child’s. For example when my obg took six months to give me the diagnosis I knew I had in month two. And she STILL has the nerve to tell me to promise her I won’t do any of my own research. Just thinking about this kind of person makes me angry. I hope it resolves in your favor. I can’t imagine why your obg wouldn’t give you lovenox – it can’t hurt, right? These doctors are not all-knowing. And they’re always looking for the easy answer (like your clotting issues aren’t related to your m/c’s – what does he think it is? pure chance?).
    Re: your circle of friends. Let me share with you some advice my best friend gave me: life is to short to spend time with people you don’t like. I have always been of the view that it’s better to have a few really close friends that you feel super comfortable with and happy around than a lot of mere acquaintances. And since my time is limited, I zealously guard my good friendships and ruthlessly let the not-so-good disappear. But whatever you decide (maybe quantity IS important for this particular function if you just want lots of distraction and aren’t so concerned about the depth of the conversation) embrace it. Enjoy it. I for one need to start thinking of enjoyment as an attitude rather than something that hits me over the head. It’s hard to put into practice though because sometimes functions can be so damn boring. Anyway, I digress. Congrats on six weeks!!


  6. hi kate…happy retirement! i’ve been thinking of you a lot these days and hoping you are well. i know many people vary in their opinions on how to treat various blood-issues, but i thought i’d throw my two cents in their re: the mthfr mutation, which i also have tested positive for. my specialist also told me “not to worry about the mthfr”…that there were no treatments and that it doesn’t have a bearing on early m/c. my naturopath, however, disagreed. she started me on prescription folic acid and a high dose of over-the-counter b6…when i got pregnant i switched to a lower dose of prescription folic acid–deplin. when i’m 13 weeks (hopefully!) i will switch to a high dose of over-the-counter folic acid to supplement my prenatal. who knows if this is the key for me or not, but all i know is i’ve never made it this far in pregnancy before and the peace of mind is worth it for me…i’m doing whatever i can. so, if you’re interested, maybe you could talk to your doc about prescribing deplin for the next 7 weeks?
    as for your friends, i’m no help. i have very few trusted friends these days and that makes me sad, too. long before my IF journey began, my friends began melting away when my mom died. it seems many people don’t know what to do with grief and loss.
    and then IF came along and snuffed out another few.
    many times i wish we in this blogging community lived in proximity to go to brunch or grab a coffee.
    anyway, happy six weeks…i’m remembering you and wishing you all the best!
    l


  7. One thing I’ve learned from my own run-ins with doctors and from reading about your experiences is this: Trust your bodily intuition.

    You were right about TTC in the hopes of an early egg, and if you feel strongly about the medication you should continue it. Luckily you have a good relationship with your OB so discuss your reasoning with her.

    Sometimes you need to be an advocate for yourself in the medical establishment. Trust yourself to know what your body and your baby needs.

    Praying for you sweetheart!

    Lots of love,
    Baraka


  8. Yay for 6 weeks! I am so excited for you!

    I think you’re being really thorough in going through your medical results, and I think that you’re right about wanted to keep doing the Lovenox. Is your doc a hematology specialist? You might want to get a 2nd opinion.

    Huge get togethers with tons of people are my favorite! I’m always so disappointed when anyone cancels! Now that the hateful job is behind you, maybe you’ll have more time to volunteer and make new friends, or to re-connect with old ones.


  9. I’d continue the lovenox in your shoes. Not too many side effects, and if you haven’t had problems so far, I’d just keep on going. Hope your OB agrees with you!


  10. Congrats on 6w!!!

    Have you thought of a second opinion with a different hemo? It sounds like this guy didnt spend long enough with you to get a sense of the situation. I’d definitely talk to your OB/GYN. If something can help, then it makes all the difference!


  11. Hematologists definitely look at all this differently than OB’s. And, in fact, OBs look at this differently than RE’s and MFMs! I’d definitely be tempted to stick with the lovenox in your shoes. I hope you get more satisfying answers from your OB. (Do you have a MFM? Sorry I can’t remember!)



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