Friday, August 3, 2012

Recovery

I had my D&C yesterday, and it was a huge releif to get that done. They did it under ultrasound guidance and the doctor assured me he was going to be 'very gentle' and he reiterated, after surgery that he had been and that everything looked fine. No doctor actually wants to give their patient Asherman's syndrome--so fingers crossed.

Emotionally, I'm recovering at warp speed from what happened. I measure how I'm feeling by 2 yardsticks- 1) how much time I spend crying, and 2) What my zest/enthusiasm for life in general is. In the past 5 days, if you added up all the time I had been truly emotionally upset or cried, I doubt it would be for more than a 15 minute period, which is amazing. My enthusiasm for life is well and truely there,I'm enjoying the olympics, I want to go out and shop, I'm eager to tick off items off my New York Bucket list,  this feels *almost*  like a normal week in my life. I'm gobsmacked by how well I'm doing, all in all.

But---I've definitely not gotten away scot- free from what happened, that is impossible. The thought of being pregnant again almost makes me feel ill. If I go the pregnancy route again, I think it would likely trigger feelings akin to PTSD. A number of you cautioned me to go easy on myself, not to blame myself for what happened.

The thing is, I definitely don't think anything I did caused the loss. It was not the cup of coffee I drank daily, it was not the beer I had 3 days past ovulation (baby not implanted yet, that was my rationale:)), It was not my 6 hour walks across Manhattan- Nothing I did caused it. But most certainly, something that I am  that is responsible for my 3 losses. I'm not really angry with myself for that , but its more like a deep embarrassment, that I'm failing where most people succeed without trying. As I've said, that comes down to ego. I've always enjoyed perfect health and a body that works well, and when you are used to thinking of yourself a certain way, learning otherwise is going to sting. There is also a little teeny tiny nugget of rage at everybody who has succeeded here. The first step to recovery is awareness, I've really been talking out how I feel with my mom, which helps.

I got a call from my doctor this morning- they got the results of my RPL panel back. No immunological issues whatsoever, which is nice, because that is the mildly harder thing  to fix, and also given that my Vitamin D levels were nice and high, I expected my immune system to be bitch slapped into submission. And yeah, it was.

But--3 flags on genes linked to coagulopathy. MTHFR (I have 1 copy of the 'bad' gene), Something with the thrombin gene, and something with  PAI4G.  I asked my doctor to email me the actual lab reports, since these are complicated, and you need the details to figure out what is going on.  Then, I'm going to read up on all of this myself, so I can asses risk independent of my doctor.  True risk aside, the treatment is simple, lovenox.

All in all, I have 4 factors that *might* elevate risk for RPL, anti-thyroid antibodies, and the 3 genetic risk factors for thrombotic abnormalities. Uhh, there is  a little smoke, and there has definitely been a fire. Are they related?

Einstein famously said insanity is doing the same thing again and again and expecting different results. Its not a 100 % true for infertility, sometimes, the 10th try may actually work. But I don't like such odds at all, and I refuse to keep gambling with them.  The next try is definitely going to be IVF, with PGD for all generated embryos. I"m seriously mulling adding surrogacy to the mix, for many, many reasons. Its around 20,000 $ in India- its very,very affordable.

But for now, I'm very, very ok.

18 comments:

  1. I'm glad you're feeling pretty good, all things considered (although I'm sure you'd like some definitive answers), and I hope you continue to do so.  I think your plan for the future is a good one.  I know how hard it must be to contemplate yet another loss, so going the IVF/PGD route (and surrogacy route if you should so decide) is fully understandable.  I wish you the best on your next step in the journey!

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  2. I think you're doing very well.  Glad you've gotten past the D&C and the doctor was so conscientious.  I'm so sorry you're going through all this but am glad you've gotten some information you can act upon.  Your plan sounds good.  Would you do the IVF with PGD in New York?  I'm interested to know your test results, as I may bring up getting tested with my new doctor.  Sending care and support.

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  3. Thinking of you.  Glad that things are going as good as can be expected (or maybe better).  I think your reflections and thoughts about pregnancy, IVF, and surrogacy are completely understandable and reasonable.   And I can understand that sense of failure.   I felt, and in my current situation often still feel, the same way.   I don't think anyone should have to feel this way, but it's so understandable.  I do hope that can be easy on yourself in this regard. And I hope that your research ends up being helpful.

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  4. I'm so glad you're physically feeling ok, and emotionally doing as well as you are, too.  IVF with PGD makes sense - and I can understand thinking of surrogacy, too.  I hope that you're able to come up with a plan that feels right for you soon.  Thinking of you!

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  5. Glad to hear that you are holding up well both physically and mentally given the situation. You seem to be thinking through your options really well, and i wish you the best in whatever path you choose. Glad you Mom is with you.

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  6. I'm glad that you are recovering well.   You have been in my thoughts.  

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  7. You know, it must be an incredible relief not to be completely flattened by the m/c. I'm glad to read that you have kept a lot of zest for life, and that you are enjoying your last weeks in NYC.
    I'm glad the testing did come up with something. I can imagine it would be distressing to see that everything was okey-dokey. You are also waiting for the embryo karyotype, corrext?

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  8. I did lovenox for my two pregnancies (starting at IUI or retrieval), with MTHFR and possibly APA.  I miscarried when I didn't use Lovenox.  Coincidence?  Maybe, but I wasn't taking any chances, and my hematologist understood why. 

    Glad you're doing okay, relatively speaking.

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  9. Jay, I am happy that you are recovering. I do have that PAI4g/4g mutation. It predisposes you to insulin resistance, can cause HELP syndrome and here in Germany they said it has no connection with blood clotting. But there are also papers which talks about implantation failure and PAI4g/4g. But as usual I do not believe anything : D I have a black and white view of everything : )

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  10. Jay, I am so sorry that you experience another loss.  My heart goes out to you!

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  11. You are so strong, its really incredible. I'm so sorry you are going through this again, but your resilience is impressive! Onward and upward :-)

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  12. Thinking of you, I know how hard this is, having 4 myself... It never is easy, but I hope you have an amazing vacation, enjoy!

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  13. Good to hear the D&C went well, and you're healing in all ways.  It's hard to know which direction to go from here, especially as you search for answers, but allow yourself some time for this.  I did Lovenox for MTHFR mutations during my pregnancy, and I honestly believe it helped me get my baby.  

    Also, I'm not sure which kind of immunology tests you had run, but make sure they're using the right kind of labs.  There are only a few labs in the country that can do the right kind of test.  For example, I asked my RE to test my Natural Killer cells, and he did - he asked the lab to test the number, or concentration of NK cells.  But the lab he sent my blood to had no clue.  Then I had a consult with a different doc which understood immunology issues, and he sent my blood to ReproSource, a lab which does all kind of testing for this.  This lab tested the activation of the NK cells.  The test came back saying I had a problem with NK cells - they were highly activated.  I don't remember the technical terms, but I do know it was a problem, and only a sophisticated lab like ReproSource was able to determine this.  Just make sure that your doc and the lab know what they're doing as far as immunology work before you write that section off.  Feel free to email me at adventures of alex @ gmail .com if you want to talk further - I would be happy to!  Also, are you getting karyotyping done after the D&C?  Can't remember if you did for the others.  Might help to determine if IVF with PGD is necessary...

    Thinking of you...

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  14.  Yes, I should get that in 2 weeks. That is still the most important part of the puzzle!

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  15.  No, IVF with PGD would be in India. Its far too expensive here!

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  16.  Yeah, I absolutely am getting karyotyping done, like I did with the last 2. Thanks for the tip with the NK cells, I've asked for the original lab reports themselves, so that should go towards answering that question.

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  17. I'm glad you're feeling okay, Jay. And glad that you have been going easy on yourself. You have the right attitude (even if there are moments when you waver). I'm so glad that your mom is there. Talking it out is important. 

    Are they suggesting baby aspirin alongside the Lovenox, out of curiosity? And will you start to take (at least one tablet of) Folgard? 

    Regarding PGS/PGD, I have such mixed feelings about this when it's used for RPL (as you probably know from reading my blog). Whatever you do, ask your clinic what their pregnancy rates are when used for women with RPL, vs. straightforward IVF in the same population.

    Any chance you have a layover in London on your way to India? If you do, I would highly (highly) recommend trying to get an appointment at St. Mary's Hospital. They run one of the best RPL units in the world and they are incredibly knowledgable. Our appointment there - and it was just a talking/informative appointment - was critical for us. 

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  18. hello Jay...i bumped into your blog somehow and I am glad i did. I am sorry you went through this again. Our stories are so similar...i too had my 3rd D&C done just on Aug 5th and I too feel the same way as you described in your post. I feel embarrassed that such basic thing which would complete our seeming incomplete life could be so difficult for us. I wish you well.... 

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