Tuesday, April 7, 2009

Lap recovery and a second second opinion

Recovery continues slowly from the laparoscopy. My RE had said I would feel about 80 percent better by Monday, which unfortunately wasn't the case. I went into work, and during rounds in the psych ER, nearly passed out. I ended up first sitting on a patient's bed (a no-no, but thought I would fall if I didn't) and then crouching near the floor. I had a brief fear of contracting MRSA off of the psych ER hospital linoleum, but I didn't care at that point. I felt clammy, nauseated, lightheaded, had greyed vision, and was cold and sweaty. Chalk it up to hypotension, I think. Was a bit embarrassing to see the house staff spring into action taking my pulse and BP, offering fluid and crackers ("Look she's tremulous! Her pulse is weak and thready! See how pale she is!") Oops. Sorry, eager young physicians, I should have stayed at home one more day.

After crawling through the morning, Will picked me up and we went to see the head of the Other Great Fertility Center in NYC for what felt like our zillionth second opinion, but was actually only our second second opinion (so third?).

We'd seen this RE once in the past, before we even got married, just to get everything checked out. He remembered us and said, "It's been a while! How have you been?" Then he looked at our chart and said, "Oh, yeah. Oh." So things began on a somber note.

He seconded what the Colorado doctor had said a bit, stating "Given how things have gone, we really have to start to wonder about your health history and the impact it has had on you." We asked whether he'd seen others with my particular chemo treatment have this kind of problem, and he said that no, he hadn't, and that the literature didn't support it either, but that it was the most likely explanation for all of the chromosomal problems.

He said it was very unusual but not unheard of to have such a great response to the medications in terms of numbers of eggs and embryo quality (he called my response "textbook" and "beautiful"), but then to have such dismal results.

In fact, he described it as "puzzling." I have other words to describe it, but I'll keep them to myself.

We talked about PGD. At length. He was a big proponent. He does feel that we are in the small sample of people for whom it would offer additional benefit. He said he wasn't sure what he would do in our shoes but he thinks he would do PGD if it were him (we asked, as we know he's been down the IVF road himself in his personal life). He wouldn't say if he felt his clinic is better at PGD than our current clinic. He said they should both be pretty good at it. And he said microarray CGH is unproven. "Could be better than PGD, could be worse." He helped us interpret the data from a number of studies that we'd previously been reading as unsupportive of PGD. He pointed out some flaws in the study design of the articles and analytical methods that we hadn't appreciated before, which made the data in support of PGD appear a little more favorable overall. He also said that if we do PGD on a good number of embryos and all are abnormal, that we only have about a 30% chance of having anything turn up normal the time after that. So that was new information.

He spoke highly of Colorado and he spoke highly of our current clinic. Of course he was positive about himself as well.

Ultimately, he said "Because of your experiences and all of the reading and researching you have done, you know more about this field than most OB/GYNs and more than some reproductive specialists." And then he shook his head. He said that if we had come to him hoping for some answers, that we were out of luck, as he had none for us.

"The best I can tell you is that you are doing all the right things. Think of it this way: whatever path you choose - to stay at your clinic, to come to our clinic, or to go to Colorado - all are great choices. All are the RIGHT choice. I can't tell you if a baby will result from any of these paths, but I can tell you that they are all solid paths with no one substantially better than the others."

So no magic bullet, no identification of something that had been overlooked. I guess this shouldn't be surprising. If there is some peace to be found in this consult, it's in this RE's last statement. That we are facing multiple right choices and have done everything in our power to achieve a good outcome. Whatever happens, we've tried our very best. The rest of it is out of our hands.

This RE shook our hands as we left the consult and offered to speak to us by phone if we have any further questions. I wish I could come up with some questions that he would have the answers to.


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  1. Well it sounds like you are doing all the right things. I know that is not really much of a consolation when you are not getting the results you want. I am sorry about that. I hope you start feeling better soon. ((HUGS))

  2. Ugh. While it must be somewhat comforting to hear that you're on the right track, I'm thinking it's more frustrating, not having a new direction in which to turn - (though this doc's perspective on the PGD sure does make that sound more appealing for your situation.)

    I hope you feel better soon, Mo. Feeling lousy on top of all this can't be any fun. Hang in there, you're in my thoughts.

  3. Always thinking of you Mo. I am praying you get your answers so you can have your miracle.

    There is an award for you on my blog just so you know! Yake care honey. I hope you feel better.


  4. Hey, it sounds like my symptoms on Friday. You poor thing. After all of my laparoscopies (I've had 3) they prescribed a week's rest.

  5. HI, I just wanted to leave a comment what the RE said about PGD. I have done PGD on IVF's #2,3 & 4. On #2 I got 2 normals out of 17 that were tested but BFN due to lining problems. On IVF #3 I got zero normals out of 12 embryos and my RE said I should expect the same results if I did a 4th IVF. I felt like it I was able to get 2 normals then I should be able to do it again and with my 4th IVF I had 14 embryos and got 2 normals which are frozen and waiting to put back soon. Don't give up on PGD & good luck!

  6. OY! Talk about a rock and a hard place! What did he think about the endo possibly being the problem?

    Feel better, hon!

  7. sorry there were no magic answers, but very cool he respected your knowledge!

  8. That sounds really frustrating. I think he just didn't want to be liable for saying something against the other clinics. And he doesn't want to say that he can give you what you want. It sounds to me like PGD is the best bet. Why not pick the clinic that has the best facility to do that.

    Oh and didn't I tell you to take at least a week off. : I

  9. Dora,

    He wasn't so keen on the endo as having any impact on the IVFs. didn't seem to really want to comment on it, actually. But my sense was that I wouldn't have gotten the surgery if I had been seeing him.

  10. hmmm....so basically you CAN'T make a wrong decision, right? that's good news.

    thinking about you lots and hoping for some peace...

  11. Hey,
    Take it easy on yourself, you've been through a lot with the lap.
    Glad to hear that the clinic was good and that you are so well informed. Sorry to hear that there is no miracle cure, but, having endo can effect egg quality,and hopefully the removal of the endo will make this better?

    When going through this journey there are so many directions and options for everyone and it's hard to know what decision is right (and we are in a way happy that we had some of the choice taken away - we knew that surrogacy is our only option because my uterus is certified dead zone). I know it sounds odd but, having the choice made for us makes it a little easier (and I have set myself with my own limits in terms of how many IVF cycles we will do with my body too).

    Anyway, if you ever want to chat you know how to reach me, big decisions to be made for sure, you're a strong woman Mo - you have fought cancer you will win this too.

  12. Mo, sorry to hear you are still not feeling too well after the lap. I hope you recover your strenght soon.
    although this doctor didn't offer answers, I liked what you said about him.
    Choosing is a hard thing to do. This is why a lot of people just let life take them wherever... I believe that there are no wrong choices indeed. Whatever you choose on your path, will be what is right for you. It's somewhat comforting that this doctor told you that. And it's weird at the same time, to hear that there's really nothing you could be doing differently to approach the same recurring situation.
    blessings to you - whatever kind you need or believe in :)

  13. I am sorry it has taken so long to bounce back from the lap. I guess that is the difference between stage 1 and 3 endo. I hope you feel 100% soon.

    I guess the hardest part is that in all of this there is no right answer and you end up second guessing yourself and wondering what if. I suppose you could weigh out the benefits/risks of each clinic like Co would require travel... but you would then have more down time to "relax" for the cycle... the current clinic you wouldn't need to go through all the preliminary tests etc... You have found some AMAZING REs along the way that seem very honest and no the same as the insecure, ego maniacs I dealt with in the beginning. No matter what you choose you will be in the right hands! Take care.

  14. I know it would be such a relief to have someone say, "oh, you are doing xxx all wrong - do it THIS way and you'll be pg by next month!" Sorry there is no magic formula (yet!). But at least he had some light to shed on some of your research. Best of luck no matter which path you take!

  15. I hope you are feeling much better. I am really impressed with all of the work you have done to make sure you leave no stone unturned.

    I will be here cheering you on for whatever step is next in your journey with Will.


  16. Well, I'm sorry you didn't find the magic solution, but maybe he at least he cleared up a few things about PDG. Good luck making your decision about next steps. We'll be here pulling for you!

  17. Indecision sucks the life right out of you, doesn't it? I'm glad that the RE echoed that there are no wrong choices, but I'm pretty sure you already knew that. This path is so difficult because there are no wrong choices - if there were, we'd all find them and be certain NOT to make them. It looks like you and Will have to decide what is best for both of you and for your future family. Know that you are not alone and we're here for you, no matter which path you choose.

    I also hope you're starting to feel better from the surgery now. :)

  18. I'm sorry you're having a slow rough recovery. I bounced back immediately from my lap, each polypectomy, and all of that. I guess--for once!--I was lucky.
    I thought that CGH was more thorough than PGD simply because it could test all chromosome pairs? Maybe I misunderstood. I wasn't a candidate because I never made blasts.
    Good luck with whatever you choose!

  19. DAVS,

    CGH sounds better, but since it involves freezing and then thawing, I've been told it may not be. Research isn't conclusive yet. And the blasts issue is a real one. I've only ever made 2 blasts myself...so that's a big problem for me too...


  20. It's so hard not to ever get any solid answers...I sometimes wish my RE were a giant 8 ball who would answer my, 'will I ever get pregnant' question with the answer, "most definitely"....I wish wish wish it were that easy. Sounds like you're taking all the right steps---I'm sorry this is all so hard.

  21. Hey there,

    Sorry there wasn't a magic solution, but am so encouraged to hear that the RE confirmed that you guys are doing the right things.

    Take care of yourself.

  22. It seems like we have quite a bit in common. I'm still pretty new on the IVF circuit all things considered, but jumped ahead due to a cancer diagnosis. (Not nearly as serious as your case - mine was borderline ovarian cancer but it did result in the removal of 1 ovary and tube).

    I respond remarkably well to stims. 40 eggs over 2 tries from 1ovary. The fertilization rate - even with ICSI - is low, but the embryos that emerge are also described as textbook.

    My doctor says he's really surprised we haven't had better results given the embryo quality and recently said something similar to your RE...that although he'd had people with my same cancer diagnosis get pregnant, he was starting to the think the pathology involved in my tumor had further reaching effects.

    We're definitely thinking about CCRM, so I'll be very interested to see what you decide.

    My thoughts are with you - it's so difficult to have such a lack of answers.


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