Monday, March 26, 2012

Update on my sister

I realized never posted on what happened with my sister after it became clear in December that we couldn't use her as an egg donor (after her AMH level came back at 0.19). Dr. Schl. had offered to speak to her to explain what this meant for her fertility future as a 31 year old single young woman, especially in conjunction with her FSH level (9.87) and antral follicle count (7 or 8 antral follicles, total).

I had first thought I might let Dr. Schl. explain things to her because I didn't want to misconstrue the information and make it sound worse - or better - than it was. Or maybe because I was being a coward. But the more I thought about it, the more I felt that was not the best way to go, and that if it were me, I'd want to have already heard that things were serious so that I could wrap my head and heart around that and be able to formulate good questions and be able to hear what the "expert" fertility doctor had to say about my situation. So I was planning to talk to her.

Really, I was.

In the meantime, I let the donor person know that Dr. Schl. agreed to talk to my sister and that my sister would be in touch. The lovely and unknowing donor person in Denver then proactively contacted my sister and me by email and said that my sister should contact her to set up the appointment. Which meant - GAH! - I felt I had to hurry up and call my sister immediately to explain why that was even happening, lest she contact the donor person and hear it from her.

Cue me in an outlet mall parking lot in the Berkshires phoning my sister in the pouring rain to say all kinds of sensitive things she had no idea were coming.

I didn't know how she would take it. She has always been very laissez faire about having kids, has always said what will be will be, has always said that she thought she would adopt, has always said she doesn't care about biology or genetics and that that that was part of why she felt so comfortable offering us her eggs.

So I thought maybe she wouldn't care that much. But really, I was worried to tell her. I was worried she would care. A lot.

So I took a deep breath and told her that there had been some issues with the tests that we'd had run on her behalf. And that I wasn't a medical expert but that we were lining up for her to talk to one - hence the email from the donor person. And of course she wanted to know more. What were my numbers - my 8 years older than her with six miscarriages under my belt numbers? Ugh. Much better than hers. What had we been told about her situation? Ugh. I told her what I understood, that she might not have too much time to have a genetically related family if she wanted one, but that I was not sure what that meant - how long she might have.

She was devastated. Wailing. And I was crying with her. And then she'd stop herself - and apologize! Saying, "I'm sorry to be so upset; I don't even know if I want children. And I know you've been through so much worse." I had to tell her that no, this was really upsetting; it was ok to be so upset. And that I was upset on her behalf. And that I was so sorry to have uncovered this news for her when all she was trying to do was be so generous and help us. And that even if she wasn't sure if she wanted children, it made perfect sense to be really upset at the possibility that that option might not be hers anymore.

I kept telling her to wait and not jump to conclusions. To talk to Dr. Schl.

Which she did several days later.

He didn't mince words. He told her that if she wanted a family she better start trying within the next six months. And that she really should consider egg freezing. But that she would likely need to do it several times, because she doesn't have many antral follicles.


More devastation. But at least information. For now my sister doesn't want to freeze her eggs. She thinks it is still too uncertain. After watching us (and I've had 110 eggs retrieved during the course of my IVFs, and knock wood, if this pregnancy continues, we'll get one baby out of it....which don't get me wrong, I would be very grateful for!) she seems to understand that an egg does not a baby make. I mean, Will and I are crazy exceptions, but still.

I have reminded her too that Dr. Schl. is amazing and smart and clinically astute, but he is not God. He doesn't know for sure what six months or a year or even two years will bring. Situations like hers are unusual. And that he is a conservative guy. So what he is telling her is her best bet to have a genetically related family. She might luck out later down the line, but if it's really important to her, she might not want to chance it.

So she is still processing all of this information. Mulling it over, feeling her way through it, mulling it some more.

If I were her, single or not, I would throw away my birth control and just see what happens.

But I am not her. She isn't even sure she wants children, or if they need to be biologically or genetically related to her. She feels she isn't ready for children yet.

And that's all she can do. Feel her way through this and keep deciding what she wants to do - or not do - at this juncture.

Whether she wants it or not, her eyes are now wide open about her fertility. Which I feel a whole bunch of conflicting emotions about my involvement in.

But it is what it is.

I'll let you know what happens next.


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  1. You are SUCH a fantastic sister. While the news is "not pleasant" (I know it's actually horrendous) I'm sure she appreciates your honesty and help with all of this.

  2. As devastating as the information was, were it me, I'd be grateful to have it so that I could digest it and start wrapping my head around some difficult questions. You're a great sister and she's very lucky to have you. BTW, what time is the u/s on Wednesday? Crossing all crossables for you and Will & Lucky #7!

  3. Aww, what a position to be in, both yours and hers. But I think I would have been glad to know the whole truth. She has a clearer picture than most of us had when we started trying, and is going straight to the RE instead of mucking around with OB/Gyns who say, "wait a few more months" and "a miscarriage resets that clock, come back in 6 months", etc. But I do know there is a big difference between "what will be will be" and there might never be. Virtual hugs for you both.

  4. Wow, that is heartbreaking to read. She is lucky to have you support her. Gosh, it is such a hard thing to wrap my head around, a young-ish single girl, not really sure what she wants her future to hold - and then wham! she gets some seriously life-altering info like that. i don't know what i'd do if i were her. my heart goes out to you both.

  5. You know, I think hearing something like this from a sister, and a sister who totally understands infertility issues has to be so much better than a doctor. So, as hard as it was for you to tell her and as hard as it was for her to hear... it probably was the best case scenario. You are a very loving and understanding sister :)

    as for how she'll deal with this - you know, at least she knows. much worse than if she found out in 4-5 years when she went to have children. Now, she has options. When I was diagnosed with cervical cancer, i did not know if I wanted children or not. i was open to it - but we had made no decisions. We were 28, still felt we had plenty of time. But, then I was faced with having to have a hysterectomy within the year. The doctor told me "You can try for a baby right now, but you need to have a hysterectomy in about a year from now at the latest."

    Now, that was too much of a rush for me. So, I had the hysterectomy and decided I would have the options of adoption and surrogacy if and when I wanted to have baby.

    So, it is good she knows. Because she can choose to freeze her eggs (something I am have not done) or she can just let it be and look toward adoption if she wants children one day. It is a hard situation , but oddly better than not knowing.

  6. Thanks so much for posting this update. I've often wondered what happened with your sister. She's lucky to have you and your experiences to pull from. Seeing everything you have gone through probably lets her know that the doctor is being 100% straight with her and that she needs to really think about the future. I'm sorry that your sister is faced with this right now but at least she has your support and knowledge to help her through it.

  7. As difficult as I know this information was for you to share and her to hear, it really will be a gift. She now has information that most women don't get the luxury of having until many years later, if at all. Information is power and while it may require her to soul search and really decide how she feels about having a genetic child, it will spare her down the line if she gets to actually trying to have a child. She will know what she is up against.

    I'm hoping that the exchange brought you even a measure closer and am glad she has a warrior sister like you.

  8. That's a lot for her to process, no doubt. At her age, I said I was very open to adoption... but as I started TTC at 38 - when it became real and not some far off future concept - I really wanted the full experience, my egg, pregnancy, infancy, and beyond.

    What I would give now to know what my numbers were back in my early 30's. As it stands now, my numbers are VERY similar to hers... AMH 0.2, FSH 9, AFC 8. So I'd say she still does have some good eggs, but it is a matter of what it would take to find them.

    It was good of you to talk to her first. And I would recommend you continue to try to talk with her as she processes this information. It's so wonderful that she has someone who really gets what it means (more so than she does at this time).

  9. It's all so complicated.
    We always said genetics didn't matter to us, and then, when the universe tried to deny us our genetic child, we pushed (what we thought) the limits of science with our five IVFs (which I know pales in comparison to you). Of course in the end we should have trusted our gut--genetics didn't mean diddly and we couldn't be happier. It was almost like being told we couldn't meant we had to prove we could, but alas, life doesn't always work out that way.
    I hope your sister can process all of this information and find some peace soon. Hugs to her and you.

  10. You really did the right thing. And I still maintain that, in the long run, this is a good thing. Her eggs are what they are - nothing that you did or she did or the medics did could have changed that. Had she not offered to be your donor, she would still have a really low AMH, she just wouldn't know about it - probably until it was way too late. This way, she knows and has choices. I have a foster sister who is in her late 30s and in a long-term relationship and is very career-minded. I have no idea what her AMH is but I have spoken gently to her about the idea of egg-freezing, just so that she has possibilities down the line (tho, in a funny way I'm kinda pleased my own eggs didn't work because that led me to my wonderful son).

    Above all, you and your sister clearly have a very strong and caring relationship and you are the ideal person to be a sounding board for her through this.

  11. Yes, devastating news, but in the long run she is so fortunate to know this now. I would have loved to know the status of my eggs from early so I could have better known what to expect when I started ttc. In a perfect world, we'd get our eggs (and hormones, etc.) checked out with every pap smear, wouldn't we?

  12. Knowledge is power. Whatever choices she makes, she at least has this information to consider. That is HUGE when it comes to deciding whether or when to pursue a family. Once she processes it all, I think she will be glad to have the information.

  13. Oh, how awful for your sister. Although we always want others to be informed about their fertility, it is terrible to get such hard news. You were a good sister to prep her for it.

  14. One of my "fertility experts" whose opinion I trust once told me that in all her years of practice (and she has many), she has never seen a couple who wanted to become parents never become parents. Whether it wis through an unexpected "surprise" pregnancy, egg donation, embryo adoption, foster care, or traditional adoption...the kids that were meant to be yours will find you when the time is right.

    I beleive this advice now more than ever. Had a previous cycle worked, I would have never laid eyes on these two amazing beings that are now my son and daughter.

    As a shadowbox I created for the wall of my nursery says - "To the World You Are Two People...and to Two People, You Are The World." So true.

  15. I agree with the previous posters in that she is very lucky to know this information. My issues couldn't have been detected with a blood test but three years and three miscarriages later (and still no baby) I would have loved a crystal ball to have known that starting a family wouldn't happen easily. We would have started trying much earlier.

    You seem like a wonderful and supportive sister and she's lucky to have you.

  16. mo,
    you had to tell her! it was totally the right thing to do, and i think in the end it will be something that will bring your relationship with her closer and more meaningful. she cried for herself and for you. that was very sweet and loving, very touching.

    when i was 20, i had a very serious, stern OB/GYN tell me that if i wanted children, i should do it sooner than later, sooner being the operative word. i was 20!! having children was the last thing on my mind, not even on the radar. fast forward to my mid-30's and a hellhole of troubles, i am haunted by that conversation. but if you are not ready, you are not ready. getting pregnant just because you may not be able to later on is not really the best reason to get pregnant.

    maybe she will freeze her eggs. i think she may be helped by some more conversation from you about this. not to persuade her in one direction, but to tease out how she feels about cycling to freeze eggs in general- you are such a good resource for her, maybe you can offer it up and see where she goes with it.

    the few weeks it takes to cycle for some eggs is nothing compared to having it be too late down the road. but then again, if it is not an issue for her, she might be open to other paths to parenthood, when she is truly ready.

    thanks so much for sharing about this.

  17. You are an amazing sister. Thanks for the update.

  18. One thing that I'd hope Dr. S told her but might not have is that her egg *quality* should be that of a 31 year old, even if her quantity is not. So those numbers in a 40-year-old mean something different in terms of likelihood of pregnancy, risk of miscarriage, etc. That's what my RE kept telling me, anyway, even as she suggested egg donation at age 36...

    The whole situation sucks. But she's really lucky to have this info now.

  19. Thank you for updating us. I had found myself only recently wondering about your sister (perhaps I need to get out more :0 !).

    Certainly you did the right thing though I'm sorry you had to be the bearer of (possibly!) bad tidings. I remember sitting in an RE's office and getting blind-sided by similar news and how awful that was. That said, and I know Dr. Sch. is very good (and full disclosure: they weren't using AMH test back when I was personally involved in this issue), I am still going to come back to this ... REs know what these kinds of results mean in the context of someone who is already having trouble conceiving and likely needs medical assistance to do so. They really have no idea what they mean in the context of an otherwise fertile woman who is part of a fertile couple (which hopefully of course will be where your sister will find herself if and when she wants to be) who doesn't need medical assistance to conceive -- which hopefully will be your sister's experience. So.

    And given that it's far from obvious to me, anyway, that invasive and possibly unnecessary treatments would be helpful. I mean that quite seriously, I mean, I wonder if the stress of stimming, etc., would be contra-indicated (if only we had a crystal ball) if we knew that down the road your sister will meet a fertile man and they will pursue family-building the old-fashioned way.

    Moreover, though much work remains to be done, they are working on ways to help women with diminished ovarian reserve and/or who are poor responders to stims conceive with medical assistance. So there may be options available in 2, 3, or 8 years that will be valuable to your sister that aren't available today.

    Just my 2c. Again, thank you for the update.

  20. Wait, wait, I forgot to jump on my favorite soapbox. One more thought: my experience with REs is that they treat our bodies as problems to be circumnavigated ... you know, like a blocked tube. Not as entities to be treated. Thus is it (I believe) that symptoms of diminished ovarian reserve are treated just as prognosticators and/or predictors of responses to possible treatments. But look: it's likely not normal (truthfully I don't think we even know ... maybe your sister's just toward the tail end of a distribution that includes only "normal," however defined) for a woman her age to have these results. Certainly not typical. So ... why? And what can be done about it?

    Darned unlikely anyone can tell her, because, again, REs (etc.) don't seem focused on finding out (treating the woman as opposed to circumventing the problem). But personally in her shoes (and with the benefit of hindsight, since I once was near her shoes though not quite in them as I was possessed of a strong desire to conceive and an involved, if vasectomized, partner), I'd probably run to a rheumatologist with expertise in reproductive issues. There may be other things to explore, but my personal best guess (and it's nothing more) is that much premature diminished ovarian reserve is linked to autoimmune issues, and it's at least possible (a) that these are worth finding out about in their own right and/or (b) that their treatment can slow the process and thereby preserve fertility. So. And unlike egg freezing, this falls firmly in the "information" category and may or may not produce actionable info. (but if it does, probably of a less invasive flavor than egg harvesting). Also, it's much more likely to be covered by insurance.

  21. You are a wonderful, loving sister. Sounds like that went as well as possible. I'm glad you have each other. You both lucked out in the sib dept. xoxo

  22. What to say..... You are a great sister. She now know what might be no surprises . She will love you always

  23. first I'd like to say that I am hopelessly addicted to your blog, and then I would like to say that you did the right thing, as hard as it was. I wish I would have had someone to tell me about all this fertility stuff....I blissfully waltzed through life thinking 'oh yeah, I'll have kids some day'. Then I met my hubby at the ripe old age of 36 and we didn't start ttc until 2 years ago, and now I am 40, and have had 4 mc's, and we just don't know what is gong to happen.

    as always...I am sending good vibes out into the universe for you

  24. Not sure where to begin, but since I last wrote you our baby's heart rate began the dreaded slowing down. On Thursday there was no heartbeat. I thought after everything we have been threw that I would be prepared for this moment but I wasn't. Dr took 10 viles of blood for futher genetic testing. I had a D&C the next day. Going from 6 cc's of progesterone and tons of estrogen to almost nothing now is a shock on the system. After working so hard for months and years for this one tiny dream of ten fingers and toes I am completely devastated. My mom starts chemotherapy next week for cancer. I ask for prayers to heal for my husband and I and the strength to be there for my mom in this journey ahead. Thanks for listening. This journey has to get easier at some point.

  25. You have already heard the 'great sister' words....they are so true.

    I am glad that your sister was finally told of what her fertility reality is. She may or may not choose to do anything about it, but if you would have known it in advance, and yet not revealed it to her, it would have gotten bad, had she started trying for biological children later.

    "Why did you not tell me?" is a very tough question to answer, and usually when a person comes down to asking it, it means, they think it would have been better to know.

    Of course, it pinched her. In all that carefree must have pinched her...

    Hugs to her, and to you.

    And continued Good Luck!

  26. Wow! So much for her to have to process. I don't envy you having to tell her but I'm sure she was glad it came from you first. As hard as the news is, at least she has the chance to make informed decisions, instead of finding out down that road that she has no options at all.

  27. Anonymous at 2:12AM -

    I am so, so sorry for you loss. Every miscarriage, no matter how well we have tried to "prepare" for them, has been devastating. I so wish you had had a different outcome. Hoping instead that you can get some answers and some peace. And hoping that the next path becomes clear soon. Thinking of you.


  28. Thanks for the update.

    While it was awful news for her, it's wonderful you were able to be the one to talk through it with her. She knows you get it, in a way that a doctor can't.


  29. I am glad she is in your care. Sisters really matter.

    Glad to read your great news in more recent posts.

  30. Agh, I am so afraid this will happen to my sister!

    I haven't asked her for a donor egg (and I'm not planning on it any time soon... if ever), but I have strongly urged her to get her AMH levels tested next time she goes in for her annual appointment. I'll feel so terrible if she has numbers like mine (.16) and just awful that she had to find out b/c of me too.

  31. This is intense! I recently came across your blog since I just started one about donating eggs to my sister. I know for a fact I would've been devastated if I was told my own fertility was a problem when I started this process. I love the way you handled it. Kudos to you and the emotional support you provided to your sister


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