As promised, here's some of the details from our one-day work up a week ago.
Objectively, the day was pretty uneventful. I had the expectation that the whole thing would be a breeze (after all, we've done this before), but I was wrong. The one-day work up was surprisingly draining. By the end of the day, we were wrung out.
I started the day with a hysteroscopy, which hurt more than I remembered, and which was normal. Met with the donor nurse, who seemed OK. I am not warming to her as much as I did my prior IVF nurse, but oh well. We don't have to be buddies. When going over the huge binder they give you (my new "donor" one is grey, versus the white "IVF" one I was given before), she instructed me to be in close touch with her and basically said she is not going to be the one to be on top of everything. "I have 79 patients, so it's up to you to keep me up to date on all the details." Hmmm...Ok. I don't love hearing this, but if this is the case, it is good to know.
Will and I both had lots of blood drawn for communicables and we're running some additional genetics on Will that hadn't been done before (CF, SMA, thalessemia, etc.) - didn't see the point since I'm not a carrier, but now we'd rather know.
We met with Dr. Schl. and discussed everything that might help with implantation. We went over all the somewhat scientific things he supports (e.g., depot lupron - ugh, and the Denver miscarriage medication protocol of Claritin, Pepcid, and prednisone) as well as the more fringe immunological things that have been recommended to me by others (e.g., IVIG, intralipids, lovenox) and he reiterated he won't prescribe any of that but is willing to collaborate with someone else if that's what we want to do. So we'll have to decide. I'm not much of a believer in fringe myself, but we're at the edges of medical science with our situation, unfortunately.
We all acknowledged that while this donor egg attempt is promising, it may not work for me. And so we spoke together about using a gestational carrier in the future if need be. The basic gist of it was a positive one: that between my uterus and a gestational carrier's, and my eggs and a 23-year-old donor's, that somewhere in that mix we would finally succeed. We told Dr. Schl. that we have had very preliminary communication with someone who, knowing our story, generously offered to be a carrier. He was very enthusiastic about this. She won't be available until later in 2012 and we would need to get to know her much better and see if she is even still interested (it's been a while since we chatted about it) as well as have her medically screened. She has PCOS, which we told him and he said that that is absolutely no problem, which was a relief to hear. Even though we're doing the donor egg cycle right now, it was so helpful to discuss this, because if we did need to go this route, I feel much more comfortable with this person than with any of the anonymous profiles we looked at. Hopefully we'll learn I can carry a pregnancy, but it was really nice to begin to talk to him about what might happen if I can't and hear his genuine enthusiasm about it. (And those of you who know him know that he is not a generally enthusiastic guy!)
We met with the psychologist for the psych eval, which was fine but not really helpful. She seemed to conclude about 20 minutes in that we are very well read on this topic and have thoroughly considered issues like integrating a donor child into the immediate and extended family and the what's, when's, and how's of disclosure. And we have thought a lot about this. But interesting at least to see what the eval entailed.
Will also gave his sample for new chromatin assay and semen analysis without incident.
And then last but not least were the off-the-books visits. These were my highlights of the day. We saw our nurse and exchanged hugs and news. And we met up with Danielle from genetics. She admired pics we have of our donor and said visually the match is a very close one, one of the best matches she's ever seen. And in general, she just made it so clear that she is rooting for us. She said she's kept my file at her desk all year rather than refiling it with the not-in-cycle files, and that every time she saw it, she'd tell herself, "I know they'll be back." "I know they're going to have a successful outcome somehow."
Please let it be true.
Mo
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It is so good to see you moving forward and sounding optimistic.
ReplyDeleteI know you've seen a million and one specialists...but perhaps a hematologist/coagulation specialist if you're thinking about Lovenox?
If the donor passes, when is she going to cycle?
Thinking of you!
So excited for you! Your blog is the first infertility blog that I ever followed and has been such an inspiration to me. I am so glad you are still in the game and I have a really good feeling about this next cycle! So wonderful that CCRM is being so supportive. Hope everything falls into place quickly. Good luck!
ReplyDeleteI'm with Danielle from genetics -- I know that you will make this work somehow! So excited for this DE cycle!
ReplyDeleteYour post is so uplifting...I really have a good feeling about this DE cycle for you!!
ReplyDeleteLoving Danielle! So many people rooting for you. 2012 is the year of Mo and Will's TAKE HOME BABY!!
ReplyDeleteSo very happy that this is going so well, so smoothly. And yeah, I'm right there with everyone else. Fingers crossed, hoping so much that this is IT for you!
ReplyDeleteIt's great to hear that you have so many people rooting for you - I know I am! I liked that anecdote about Dr Sch getting enthusiastic - I think it must be a reflection of how anxious/excited he is for you to have success. Let this be the one that does it!
ReplyDeleteMo, Will, long time lurker here, physician also, and our situations are very very similar...we too went the donor egg route....i did get pregnant, but m/c'd several
ReplyDeletetimes....we are now 18 weeks with our GC...a close friend...we did have success....just a long road to get there.
Sorry...forgot the rest...its anonymous physician lurker here again. We did nothing "fringe" Went totally by the book for me, but still m/c's...just didn't want to risk more time, money or emotion and so the GC route was the decision. No regrets at all. I think, for what its worth, that this is the right path. I wish you all the best. You will have success.
ReplyDeleteI'm feeling so, so positive for you.
ReplyDeleteLOVE the sound of your donor - I'm not a vibes person but I'm getting very good vibes about this :)
Dontcha just love Danielle? She is so great. Interesting the conversation with the donor nurse - I guess her honesty sets expectations, but still...not so comforting. Anyway.
ReplyDeleteI'm super-excited for you guys. I hope you get all the all-clears very soon.
I agree with Danielle. A successful outcome will happen somehow....:D
ReplyDeleteIt's so exciting! somewhere in here is a baby for you. As my husband and I used to say "by hook, or by crook".
ReplyDeleteBoooo to your nurse?!! I wonder which one it is...mine was great. I loved Danielle too. I think its great you've got Plan C in the works IF need be. Crossing fingers you don't need Plan C.
ReplyDelete"Please let it be true", indeed!
ReplyDeleteThat does sound like a draining day, with lots of ups and downs. I know you'll succeed sooner or later -- I vote for sooner!
ReplyDeleteI'm SO pulling for you guys!!!
ReplyDeleteI know there are still some hurdles to get through, but I am so excited for the prospect of you doing a DEIVF cycle soon! It's so great that so much of the staff at CCRM is pulling for you. It's good you have the carrier back up plan set. It seems having a back up plan will make this next cycle much less stressful. I am pulling for you Mo!
ReplyDeleteWow, that surprises me that 1 nurse has 79 patients. That seems like way too many to manage. But I agree with you that it's better to know that up front.
ReplyDeleteI'm surprised Dr. Sch indicated he was against Lovenox. In my case he asked me to work with a hematologist because he thought maybe my blood wasn't thinning at the rate it should even on Lovenox and he didn't have a lot of experience with micro-monitoring in those cases, but the impression I got was that he wasn't against it at all - he definitely thought it was necessary in my case.
Rebecca
ReplyDeleteThat is, unfortunately, what the nurse said, unless I misheard her. I also thought it sounded like a lot of patients. My guess is that most of those people are not in cycle at one time. I also wondered if they give the donor recipient nurses more patients since all their patients are prepping for FETs, which is simpler than prepping for retrievals? Not sure...
Also, thanks for calling me out re: the lovenox. I should clarify: lovenox is evidenced-based and clearly medically indicated for some people. He just does not necessarily agree I am one of those people. He is definitely not against lovenox across the board. My APA panel is usually normal (was borderline once, but not in his lab, so he is suspicious of the result). The main indication for me is my TH1:TH2 ratio, which is an immunological thing he's not so sure holds water (we aren't either). He told us three women have died from taking lovenox when it wasn't clearly medically indicated and he advised us to proceed with caution because it is a powerful drug.
Please let it be true indeed. When would you cycle? I hope that you caught the nurse on an 'off' day and that she's actually much more wonderful; at least for your FET. I also hope that this works and am so glad that the donor is a close physical match-- that's reassuring, I'd think. Holding high hopes that something truly wonderful unfolds for you in 2012, however that happens.
ReplyDeleteVery exciting stuff here! I very much look forward to following your progress.
ReplyDeleteI will say that even though my son was born after adding IVIG (and Lovenox) to our IVF cycle, I am still not so sure I am all gung-ho about the "fringe" immune stuff -- and it's been really tricky pursuing those treatments in tandem with the "standard" stuff, outside my clinic, and often with many of the REs at my clinic making fun of me for doing it (although my 'primary' RE supports it, though not 'officially' - it's more of a back-door hush-hush thing he sends his 'problem people' to do, I guess).
That said, I still just did a cycle with intralipid (resulted in a chemical, but a surprisingly strong first beta for me) and plan to try again, and may do IVIG again. That is scary about the deaths from Lovenox. I do not have any clotting issues, but have been on it for several cycles for its "immune benefits" -- and even through the 6th month of my pregnancy. Yet I do always feel a bit strange about it.
If money were no object, though, I am almost certain we would be pursuing surrogacy at this point. I am so tired of being a science experiment.
Sigh. Can I just curl up in a hole now with a log of cookie dough and a bottle of wine? Wish you could join me! Wishing you guys all the best.