Tuesday, August 24, 2010

RE Recap

I had my appointment with the RE yesterday to discuss the results of the testing we did, my MTHFR diagnosis, and the current plan. It went great. I feel a bit like a drug-seeker might after a successful doctor’s appointment…

We talked about the compound heterozygous MTHFR thing. If I was homozygous, he would definitely recommend Lovenox. Given that I’m compound heterozygous, it’s up to me. Even if I was just heterozygous for the C677T mutation, it would still be up to me. So, I’m choosing to take Lovenox – will start taking that at the beginning of my IUI cycle, and continue, assuming I get pregnant, until 6 weeks after birth. He said a lot of patients quit taking Lovenox after 12 weeks, but there’s some risk to stopping, so I’ll plan on doing it until after delivery. He said a lot of OB’s are nervous about having their patients on blood thinners – legal issues like if I got in a car accident and didn’t get fast medical assistance, I could bleed out. But he said he’s worked with my OB before, and the OB is usually fine with patients on Lovenox. Also, I will be on Medrol for 5 days around implantation. This helps to suppress my immune system a bit so my body doesn’t reject the embryo. Add these two meds to baby aspirin and Folgard, plus the Gonal F, Ganirelix, Ovidrel trigger, and some progesterone suppositories that I had in the last cycle, and we got ourselves a whole basket of meds – all to help me have a baby. Basically we’re throwing everything we can at this, short of doing IVF.

The whole appointment went well. I felt so empowered with my research, with the knowledge I’ve obtained during this whole process. I was able to have an intelligent conversation with the doc, and there wasn’t anything he said that I didn’t understand. The hubs just sat there, listening to us, and afterwards he said he was impressed with how much I knew. The doc and I talked about different theories, different approaches to fertility. He said there are 6 doctors in his practice, he’s the head doc, and every doctor has his own theories, his own ideas. There’s one doctor in his practice that doesn’t believe at all in anything immunology related. That doc calls it “hocus pocus.” My doc was very clear that with the immunology stuff, there isn’t a lot of “scientific proof” that immunology problems are the cause, and that the solutions really work. As with everything pregnancy related, it’s very hard to have widespread clinical trials to really gain proof. We talked about Dr. Alan Beer – my doc actually studied with him while my doc was a student! So he believes in a lot that Dr. Beer did, and with the immunological approach. He doesn’t necessarily promote it, because of the lack of proof thing, but when he has patients like me that are ready and willing to “push the envelope” as he called it, he’s more than happy to oblige, and he’s not going to fight me, or encourage me to be less aggressive. He said, “You’ve gone through so much to get here, why not try everything you can?” I wanted to hug him.

This new approach gives me a lot of hope. With a diagnosis, we can fight this. I’m happy that we’re being as aggressive as possible without IVF. I really don’t think IVF will help us – I’ve gotten pregnant twice in as many IUI’s. The ectopic was a fluke, I think. And the miscarriage… I know I don’t have a lot of history to necessarily justify all this medication, but I have always felt in my gut that there was a problem. I’ve been so frustrated with the “unexplained infertility” diagnosis. Now, I feel like we’ve identified something wrong, we’re being aggressive in fixing it, we’re going to do another IUI as that seems to work, and for the first time since the miscarriage, I feel real hope that I might just get that baby. Not just get pregnant, that’s not good enough. Someday, I may have a real live healthy baby at home.

36 comments:

  1. Glad the appointment went well and your hope is renewed!

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  2. Yes! Great news! I have everything crossed that third time's a charm!

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  3. Awesome. It is great that you had a satisfying appoinment with your RE. It is so interesting that some doctors don't buy into the immunology thing, I know so little about it but in the future i might be emailing you because I want to cross off any possible impediments. But, this is about you and your getting and staying pregnant. Good luck!!

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  4. Glad you had such a great appointment. Hoping that armed with this extra knowledge and new plan you'll finally get and stay pregnant.

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  5. It is so important to have a plan that you feel comfortable with and it certainly sounds like you and your RE are on the same page. Hoping that this is the answer that you have been searching for!!!

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  6. I'm so glad that you had a great appointment. We really do need to be our own advocates and go into those appointments with as much information as we can. Congrats on moving forward with such a positive attitude!

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  7. YEah! That sounds like a fabulous appointment. Good luck!

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  8. hope's the best feeling in the world when you are going through that process. I am glad you educated yourself, it sounds like you blew hubs away! I hope you have a baby to take home soon too!

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  9. GREAT news. I am so glad to hear that the appointment went well and that you have a plan in place. Good luck! I'll be cheering you on every step of the way.

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  10. wow! That sounds like a great appointment and what a great amount of information you've been able to share here. I totally think your doc is right on with just being supportive of how aggressive you want to be and not trying to talk you out of anything (unless it were harmful.) Can't wait to see it all work out for you!

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  11. That is awesome news, Alex! Way to go for being informed, and again, the fantastic news! Fingers crossed!

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  12. Hello, glad your appt went so well & I see that your doc is following a good protocol for your upcoming cycle. I hope that with a little "tweaking" it will prove to be successful. I appreciate your comments on my blog, btw...thank you!

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  13. This is exciting!!!! I really think the third time will be the one for you! And I can't wait!

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  14. I'm so glad that the appointment went well. And, I'm glad you've got a great plan and are feeling positive. Sending lots of positives to you!!

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  15. Finally some answers and a supportive RE. That's always key in keeping hope alive. Hope this cycle is it for you.

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  16. Sounds like a fantastic appointment with a really great RE!

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  17. I am so happy to read all this!! Sounds like you finally have a really good plan in place and the doctor sounds awesome too! This is definitely a huge step forward for you :)

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  18. That all sounds so good :) I love when Drs ACTUALLY listen to you and don't discount theories as you being a hysterical woman (I've had that experience!)
    Here's hoping that everything you're throwing at this makes it stick - go baby go!

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  19. My sister is taking lovenox shots with her current pregnancy because of MTHFR too. She actually has a blog, at my urging, if you want to check it out http://melissamuirfamily.blogspot.com/. She is also doing the baby asprin regimine. You should catch up with her. I am sure she wouldn't mind sharing her information on MTHFR and pregnancy.

    I'm glad that your doctor is letting you go this route simply because I know it was and is a good route for my sister. Even if the Lovenox doens't help, it brings her peace of mind.

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  20. I am so happy your Dr. is so receptive to Immune Issues....I know that this is the reason for many womens miscarriages...I am a perfect example...I will urge you to maybe as Dr. if he will test your NK cells...I only say this because I had the MTHFR dx before my NK cells elevation Dx and I to do the Lovenox/Baby Aspirin/Folbic Tab/Prednisone to lower my immune system....yet I still miscarried....So just a suggestion but I am so happy you have a new plan and restored hope that is huge in an IF journey...open doors..new plans!!!!! YIPEEEEE

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  21. It's so great to read about your new plan and, IMHO, good idea about the Loveno.x. It can't hurt!

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  22. What a great appointment! I am so happy to hear you and your doctor are on the same page and that he is willing to help you the way you see and is not afraid to try this new route. I know what you mean about going into a doctor's appointment and being prepared, it's so less scary and actually more productive this way! Good on you for doing all the hard work beforehand!! It really paid off!!

    Not too long till your vacation now.. I am jealous you are going to Italy.. I haven't been home in more than a year and miss it so much!! Hope you will love it as much as I do!

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  23. Glad your appointment went well! Helps to be able to focus and be optimistic about the upcoming cycle.

    Sounds like a very similar protocol to what I'm doing, even though I'm doing IVF. Mine's Gonal F, Menopur, Ganirelix, trigger. And then Lovenox and progesterone post retrieval.

    I agree with Nick and Kristi -- it would be good to get the NK cell levels tested. I'm doing Humira next month, and then Intralipids if I get a positive.

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  24. Happy ICLW! Good for you for being so informed and taking charge. That's terrific. There are some G20210A issues in my family that I need to get tested for (http://plantingapumpkinpatch.wordpress.com/2010/08/13/seventy-six-thrombones/), but haven't done so yet. Did your RE do the testing, or did you go to an immunologist for that? Sounds like you're on a great path.

    Take care,
    lp (#133)

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  25. Good for you for going into your appointment knowing what you are talking about. That's the best way to get good medical care. Proud of you!

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  26. What a great appointment. I am excited to see how your treatment progresses. Awesome news, Alex!

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  27. Glad to hear your appt went well! That is a lot of drugs but it's worth it if there's even a possibility of upping your chances imo.

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  28. Alex, I'm really glad you have a plan. And the Lovenox isn't terrible. It stings a bit but you DO get used to it. And the research on it with MTHFR is limited, but still kind of compelling. Your doc sounds a lot of mine - not convinced by the autoimmune thing, but not willing to dismiss it out of hand either. My feeling is that this is exactly what makes a good doc.

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  29. Glad you had a good appointment - I feel compelled to respond so I hope that what I say is helpful.

    I really think that with unexplained IF there is a high probability of immune problems. I also think its good that you doc is throwing everything at it that can help - that is where I am about to go next. Everything except IVF, because IVF does not overcome rejection problems. It's just wonderful that you have a supportive doctor.

    My previous doc once told me that the reason there is so little research on immune problems is because no RPL patients want to risk taking a placebo. Makes perfect sense.

    Andie

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  30. Great appointments with the RE are always nice! I hope that your next IUI is the "one"...Happy ICLW!

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  31. Great post, Alex. It sounds like you have a really great RE--who listens, who talks WITH you and who knows his stuff--and equally, you've done your research and know how to advocate for yourself. Best Wishes for your current plan!

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  32. YAY! I am so excited that you have a plan. It does seem like a lot of meds, but you sound like you have a great RE who wouldn't steer you wrong! I am very glad that you pushed the doc because of your instict about something being wrong! Best of luck!

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  33. It's so great that your RE is so open to helping you however he can. Good luck with your new protocol!

    Happy ICLW!
    #171

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  34. Yay! So glad you got some direction and answers.

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  35. Thanks for the comment and the advice on the suppositories. It sure will be a new experience! :)

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  36. Thank you so much for your sweet blog comment. Your friendship and support means so much to me.

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