Monday, December 5, 2011

How important is the antral follicle count?



My 31-year-old sister went in to her local fertility clinic for her baseline ultrasound and FSH day-3 testing today to see if she can donate eggs to us.

And apparently her antral follicle count (AFC) isn't so great, given her age and our desire to use her as a donor. They saw 4 on one side, and 3 to 4 on the other side.

Ugh.

We are still waiting for the estrogen, FSH, and LH levels to come back today. And we are waiting on her AMH levels too.

We'll have to repeat all this in Denver if we decide to go that far...but what we don't want to have happen is for my sister to go out there and fail the screening like the anonymous donor did. Then she'd be out 1-2 sick days and we'd be out another $6,500 + her flight and hotel costs. So we were trying to get a good sense ahead of time that she would pass.

Needless to say, after hearing the antral follicle count was this low, Will and I are having a sinking feeling about this.

My sister, on the other hand, was blissfully unaware that this was not great news until I told her this morning that the Denver cutoff is usually 12 for a donor, although they might make an exception since she is my sister.

One thing that is puzzling us is that we think my baseline count has never been so great (like 6 on each side or something), and when stimulated, I crank out 18, 19, 22, 25, eggs, like a veritable egg factory (not that it has done us much good so far...)

Another thing is that my sister just got off of the birth control pill a little over a month ago...wondering if that could affect her AFC still?

So I'm a bit confused about how much weight to place on this.

So now I turn to you...how correlated has your antral follicle count been with your egg retrieval numbers? And how old were you? It would be great for us to hear (the good, the bad, and the ugly) and would also be a good resource to others who may stumble on this page down the line.

Maybe this isn't "meant to be." Maybe we aren't "supposed" to go with my sister? But I'm not even sure what that means anymore, really.

Feeling sucker punched, again. Seems like we can't catch a break over here.

God, I hate this whole process.

Mo

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Wednesday, November 30, 2011

Depot Lupron: what doesn't kill you makes you...hotter?


I just started month two of the dreaded Depot Lupron to treat my stage III endometriosis and presumed beta-3 integrin deficiency. I don't know about any of you out there who've taken this, but for me this stuff is poison to my body and my mind. It honestly ranks up there at the top of the list of all-time unpleasant infertility-related activities for me.

I feel just completely taken over by Depot Lupron. This time most of the first month wasn't so bad physically (which is why you haven't heard me whining before this). For the first three weeks, I didn't seem to have many mood effects and experienced really no hot flashes. If it hadn't been for the prodigious three weeks of bleeding, I would almost have thought I'd gotten a bum batch of the stuff.

But all that changed about two weeks ago. Suddenly, the bleeding stopped, and instead I felt...hot and sweaty...had heart palpitations....and felt a profound bleakness descend (as evidenced in my last post).



Because I struggled when I took Depot Lupron last summer, I asked Dr. Schl. if there was anything I could take that would help ameliorate the mood and physical symptoms (apparently there is something, called "add-back therapy" that replaces a bit of the progesterone that your body isn't making). I asked for it not just for my sake, but for poor Will's and Moxie's sake. Not to mention the sakes of my patients and of the populace of the greater New York City metropolitan region at large. So this time, once the hot flashes and blueness descended, I started taking small doses of synthetic progesterone. It hasn't eliminated my symptoms, but I think it does lessen them a tad (hard to tell, but I haven't had to change clothes in the middle of the night because I'm soaking wet, or gotten super irritated at anyone, or killed Will, or taken a mental health day...so I think so).

So these little white pills seem to be helping, but the original prescription didn't include enough pills to do this twice (originally, we were only doing one dose because we were planning to cycle with the egg donor in December).  Given this, I called my nurse. You may remember, I haven't been thrilled about her from the beginning of our donor egg adventures...

When I reached her, I asked for a refill, and she said ok. But she also said (1) that I am the only patient she has ever heard of ask for a prescription for add-back therapy at the Denver clinic, and (2) that she thought it might decrease the effectiveness of the Depot Lupron for dealing with endometriosis and beta-3 integrin deficiency (I can't remember her exact words on this, but she raised it as a concern of hers). So I asked her to check on this and please get back to me.

I got off the phone and realized I was left feeling vaguely uneasy after our call. Why tell me I'm the only patient to ever request this? Her comment made me feel like I was asking to be coddled. Once I realized that's what was brought up for me, I was annoyed. Why shouldn't I be able to take something to make this a little bit easier if it's out there? Why shouldn't all of us?

And then on top of that, why opine that taking the add-back therapy might reduce this awful drug's effectiveness? Because the only thing worse than feeling like crap while taking this damn drug would be taking this drug and feeling like crap for no reason. And why would Dr. Schl. have prescribed the add-back therapy if it could cancel out the effects of the Lupron treatment?

Sigh.

Yesterday I got an email from her that Dr. Schl. said all is fine, nothing to worry about, take the add-back, the Depot Lupron will still do its job. So really, was all that necessary?

It's been an occasional pet peeve of mine throughout my medical journeys, this implying you are high maintenance for asking to have something suck just a little bit less. When I had lymphoma in my twenties, I had a mediport surgically implanted under the skin on my left upper chest to receive my infusions. For every chemotherapy treatment, the nurse would place a needle (called a Huber needle) through the skin that covered the port and connect it to my IV line. You should check it out, folks, because this is no ordinary needle; it's more like a thumbtack. And so it hurt. Especially because it was done every other week and your tissue really doesn't heal well when you're getting chemotherapy. I knew that there was a new cream on the market, a topical analgesic called EMLA. So one day I screwed up my courage and I asked if it could be prescribed for me. And I was told "That's only for pediatrics. We never prescribe that for adult patients." Which silenced me immediately. I felt like a big baby.

Similarly, after our first and second pregnancy losses at 7 and 8 weeks, my then-ob/gyn advised that I should have my D&Cs in his office sans anesthesia or any pain control beyond ibuprofen. So I did, twice, because I felt like such a wimp asking to be knocked out, when he'd made it so clear after I asked for an OR procedure that it should really be fine - and his other patients didn't mind it. Actually, I found the in-office D&Cs to be terrible, both physically and psychologically (especially because one time the equipment malfunctioned and he had to manually scrape the lining of my uterus). And consequently, I no longer use that ob/gyn. But why make it so tough?

So, yeah, obviously this phone call touched a nerve for me. And Depot Lupron has the effect of exposing all of my nerve endings and making everything feel...well...hotter. This nurse isn't so bad, but I do wish she'd keep her opinions, especially when they aren't based on scientific evidence, to herself.

Looking forward to finishing the dreaded Depot in about a month. Really hoping my sister checks out and can cycle so we have something to transfer, and then hoping that these two months of suffering help implantation go at least a little better than it might have.

I wanted too to say thank you guys for all of your comments and thoughts on the last post. It helped, it really did, to read that you all get it, or that you might not totally get it but you realize that. It means so much that you've stuck with us even though the tough times, that you're still reading and rooting for us. We appreciate it more than we can say.

Mo

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Monday, November 28, 2011

Lament of the end-stage infertile



The holidays are a tough time of year for Will and me. November is the anniversary month of two of our pregnancy losses - our first miscarriage and our sixth. It is a time of taking stock of the last year, and of time passing in general: of where we are versus where we wish we were, where we had hoped to be.

The holidays are a time when we are surrounded by family and friends, which is wonderful. We are lucky to have the friends we do and are grateful to have our families. But it is also true - and exquisitely painful at this point - that nearly all of our family and friends, literally almost all of them, have children or are expecting (even the infertile ones).

Two of my close friends are currently pregnant after struggling with infertility. One of them reached her due date yesterday. She and her husband underwent a solid year of IUIs before becoming pregnant. She lives out of town and has been very compassionate in her dealings with me. (For example, although we are close, she did not invite me to her baby shower. And I was grateful for this.) I spoke to her over the weekend and almost had the sense she would not have talked about her pregnancy at all if I hadn't asked. And when I did (of course I did!), she told me how she was feeling physically and how excited and scared she and her husband are. And then she went back to talking about her new hospital position and parents and sisters and her apartment. Throughout our conversation, this friend very kindly did not gush about her pregnancy. She did not tell me how everything up until this point in her life pales in comparison to preparing to welcome her firstborn, that having a baby infuses her whole life with meaning. Which I greatly appreciated, which I imagined was tough not to do, and which allowed me to gush for her and on her behalf.

My other dear friend is just at the beginning of her second trimester. She also underwent several IUIs and had two early pregnancy losses. And then she did a single IVF and got pregnant. And unlike us, she has stayed pregnant.  She is just at the point of buying new clothes because her old ones don't fit. She is elated; she is still terrified after having had two losses; she is right where I would expect her to be. And this friend, God bless her, very much wants to convey to me how - although she's pregnant and seems to be staying pregnant prior to having a baby - she is Just Like Me. 

Only problem is, every time she tries to join me, I feel ever more alone. I love this friend, but I want to tell her that she is not like me. She is on her way out the other side and will almost certainly have a baby, a baby who is her genetic child, a baby whom she will deliver with her own body. I want to tell her that 33 with no cancer history is not the same as 39 status post chemotherapy. I want to tell her that although she has deeply grieved her two pregnancy losses, she cannot imagine what it feels like to have had six losses. I want to gently say to her that her one experience of IVF doesn't feel anything like going through IVF seven times.

But this isn't quite right. It is actually not at all what I want to tell her. Because in truth it's not about how many losses she's had or how old she is or how many procedures she's undergone. It's something more ineffable. 
It's the fact that she did one IVF and actually thought it would work - and it did. She has struggled and suffered and grieved but she has not had to so keenly feel the sharp pain of hope fading at each IVF failure, after each successive loss. But in spite of this, and for reasons that are unclear to me, she desperately needs to assure me that our experiences are the same.

What she doesn't - and cannot - know, thankfully, is the gut wrenching place of hopelessness, the place where the doctors at the best clinics look you in the eye and say they don't know how to advise you, that the prognosis is grim, despite looking so promising on paper.  The feeling that there is no way out to the other side, no matter how much of your savings you use up or what clinic you go to or what diet or acupuncture regimen you try. That chromosomally normal embryos won't work, that even a perfect-seeming 23-year-old egg donor won't help, because there is always still something wrong, some amorphous and unnameable thing that will trip things up and make your dream of parenting unattainable. 

This is the place where Will and I often live now. When we face it squarely, our pain is so intense as to be immobilizing, almost like staring into the sun. The feeling is blinding, and it doesn't help us navigate a way out of the situation we find ourselves in. We gaze straight into our deepest fears that maybe we will never be parents. Maybe there is no "out the other side," even though bearing children is my biggest hope and desire since I was a young girl.  We have times of hope, of thinking we can still succeed somehow, and we are strong-willed enough to keep trying to move toward a solution (such as having my sister donate eggs) even if that solution seems improbable and filled with peril. 

I want to make it clear that I wouldn't expect my friend - or most anyone, actually - to understand our situation fully.  It is an incredible gift when someone "gets it," and many of you readers are among those whom we have felt truly understand (thank you, truly thank you, for that). It's this friend's continual attempt to empathize by comparing the two of us that is so painful. 

It is an unfortunate truth that as Will and my infertility has gone on and on, we have become more withdrawn from others and felt more alone. It is increasingly difficult to go to the many child-focused activities we are invited to. And it is hard to be honest, even if others do want to know how we feel, because we know our sadness is tough for them to witness. 

My sister is still waiting (seems like forever) for her period after going off of birth control pills. Will is looking at agency donors again as a back up (I just can't bring myself to). We've perused the CCRM database but have not found a good match for us there. We are still corresponding with a potential gestational carrier. 

So things are nowhere near the end, but gosh it sometimes feels like it. It feels impossible to imagine coming successfully out the other side, impossible to imagine getting past this painful place in our lives.  

They've barely begun, but already we are looking forward to the holidays being over. And we are wishing with everything we've got - even as we fail to be able to imagine it - that this time next year finds us in a much different place.

Mo 

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Tuesday, November 22, 2011

And the psychologist sez...


Will and I met today with a NYC psychologist who specializes in infertility to discuss using my sister as an egg donor. We wanted to get a sense of  the issues we should make sure to consider that we might be overlooking.

We really liked this psychologist. Were impressed by her (and as a fellow psychologist, I can be sometimes be a tough sell). She was a good mix of smart and practical and just empathic enough without overdoing it, and she kept us on track when we started to veer.

Her bottom line was fairly simple, and she stated it a few times in case we were slow learners.

She said emphatically that barring a substance abuse issue or major mental illness in my sister, using my sister as our egg donor is an ideal next step, a potential solution to the very tough situation we find ourselves in.

She reiterated variations on this theme a few times throughout the meeting. That assuming that my sister is on board with this idea (and my sis is downright enthusiastic), and assuming Will is ok with it (he is), this is a wonderful, wonderful option.

How nice to hear. I'd half expected to hear the creaking sound of Pandora's box opening and of us being faced with cold, hard issues we'd somehow missed in our exhaustive attempts to think through every nook and cranny of this decision.

But no. The psychologist said it sounded really good (even with our faults and my sister's imperfections). And that it shouldn't substantially change our relationship with my sister.

Her take home message was that my sister's ability to donate eggs to us would be a gift, an amazing gift. And one that we might need to work a little harder on just learning to receive and say thank you for, rather than analyzing it and then analyzing it some more.

The psychologist gave us permission to stop all of the second guessing as well as my specific tendency to think I need to decide for Will and me and also somehow decide what's best for my sister, too.

The psychologist offered to meet privately with my sister when she's in town sometime and then meet with the three of us to discuss again as a group if we wanted. But basically, she gave us the psychologist's version of her blessing.

Still processing this, but generally it feels like a huge weight has been lifted off of my shoulders. Like we've been given approval to go ahead, and that I will not harm my sister by accepting her offer, or scar my child, or any other negative and scary outcome.

Feels like a big relief to get an expert's opinion that yes, this makes sense, that yes, it is a good idea.

Now let's just hope Marina can pass through the gauntlet of testing that faces her and come out the other side successfully.

Here's hoping.

Will and I at the psychologist's...
Can you guess who is who?


Mo

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Sunday, November 20, 2011

For your amusement

Made me chuckle (and a little sad, too) thinking of all the time we've spent doing IVF cycling and me shot up with depot lupron, or recovering from procedures, or on pelvic rest waiting for my beta...all the while poor Will waiting patiently, his sperm starting to look like this...




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