Tuesday, March 9, 2010

Onward and upward? Meds increased again

Thanks for all of the support on making my concerns about the lowered meds dosage known to Dr. Schl. Really appreciated. It is very difficult to speak up to one's doctors and question (respectfully, of course) their decisions, make sure they are considering all the angles. I hate doing it. Your encouragement in that department made me feel much better about asking for more clarity about the dosage situation.

Consequently, the nurse called last night and they raised my dose of gonal f back up to 150 and kept the menopur at the reduced dosage of one vial. Not sure how this makes me feel - on the one hand, it makes me feel that my concerns were heard, on the other, it makes me feel that I need to keep an eye on how things are going because some of the details might get overlooked if I'm not attending to them myself. Blech. Not a great feeling, I have to say, but I keep telling myself that 75 ml v. 150 ml of gonal f isn't a big deal either way...right? (The nurse swore, btw, that they take doses up and down all the time and promised it won't affect egg quality - I was nervous b/c at my NYC clinic med doses only go down - never back up...but she says it's ok. Feel free to pipe in with any experience on this, please!)

In other news, yesterday's E2 continued to demonstrate a climb - from 1880 to 2434...today's results are pending.

Ultrasound results today weren't so elucidating - I think I got the tech who doesn't measure all the follicles - just the largest ones - and doesn't communicate what she sees so much. I have one that is 20mm, but a bunch that are smaller. I thought I'd be triggering when I had follicles reach 20mm, but I guess because there are a number of smaller ones they will be holding off. Part of me questions the accuracy of a follicle growing 5mm since yesterday. I'm secretly hoping the measurement is a bit inflated, but who knows.

I'm heading back to the clinic in an hour for an "IVF physical." I assume just to make sure I won't crash on the table or something. My NYC clinic doesn't do these.

Will arrives tomorrow and I'll take him straight from the airport to an hour and a half appointment with the genetic counselor to go over microarray and CCS details again and sign consents.

I'm really looking forward to Will being here. It is hard to do this by myself.

In the meantime, I'm telling myself to breathe.

To let the clinic doctors do their job.

To trust in the process.

Really, I am trying. But this is definitely not my strong suit. Can you tell?


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  1. I'm glad you're questioning, and I'm glad you're on top of it - honestly, it sounds like things are going great, even though it's got to be maddening.

    An interesting idea- would I rather have the doc take my concerns so seriously that s/he reverse an earlier meds decision, or would I rather they just ignored my concerns? Which would make me feel better? Hmmmmm.

    Hope the physical goes great & I"m so glad Will will be there tomorrow. You're brave to be doing so much of this one alone, but I'm glad you won't have to be brave and alone for much longer!

    Thinking of you, and wishing for a ton of happy, perfectly-sized follicles on Thursday!

  2. I am just about to start IVF (not giving it a number, because THIS one will work, right?).... but I was a fairly slow responder in my previous IUI's (250iu follistim=3 mature follicles), and so I found myself also questioning his IVF med protocol. (He doesn't add any other FSH or use estrogen patches, etc.). (Wrote a whole post about it last week!) When I called my nurse, she said I should definitely bring up my concerns w/ my doc on Thursday at my u/s.

    I also don't know which I'd rather prefer- an RE who says "oh really? you heard xyz med is good for your situation? okay let's try it" or an RE who sticks to what he knows works...and doesn't pay attention to the nervous patient who has done too much googling...

  3. I don't have to much advice to give. I too was always very wary of second guessing my doctors. But still, I'm glad you did ask. Mostly I haven't commented in a while and I just wanted to say that I'm still reading, thinking of you, and hoping for the best for you!

  4. I am glad you asked about the meds. You have to stick up for yourself in this process! With your E2 getting up there I bet you are starting to get that full feeling. I hope all goes well with the ER. The physical thing is new... I didn't get one at my 2 CT clinics and I thought the NYC was pretty thorough doing the pre-op appt which the CT clinics didn't bother with. I guess every place is different.

  5. It's definitely a tricky situation when your doctor takes your advice and changes things. Even if he were going to change them himself before you brought up your concerns, it's tricky knowing what is right or not. I'm just glad you asked and I hope you keep asking.

    Yay, for Will joining you. You are so brave already and will be even stronger with him by your side.

    Good luck with your next scan and I hope your smaller follies do some catching up. Something to think about is Repronex...it slows the growth of the larger follies while giving the others a chance to mature and grow.

  6. Just keep advocating for yourself. It's a hard thing to feel like you're going to the very best and STILL have to stay on top of them, but they've increased their patient numbers/cycle numbers a lot over the years and still have only four REs running all those cycles. So it just pays to stay on top of it.

    One of my main criticisms of them is having different u/s techs measuring the same patient daily...they all have their own way of doing it and for consistency it seems better to have the same one when at all possible. But they never asked me :)

    I'm glad Will will be there soon. I went out a few days early on our last CCRM cycle and hated being by myself.

    And have fun at the physical--it's literally a check of your iron levels and then a listen to your heart and lungs. I don't even want to know what they charge for it...

    HANG IN THERE and take it one blood draw, one ultrasound, one visit at a time. You can do it!

  7. So glad Will is going to be there soon! Good for you for advocating for yourself - and I know what you mean - when docs change things because of my questions - it makes me nervous!

    You are amazing and I am pulling for you all the way!

  8. Breathing and Will arriving - two very good things :) Thinking of you honey. You're doing great.

  9. It is hard to advocate for yourself sometimes and I commend you for speaking up. I will share with you that my doses were consistently going up and down. I was an over-responder and at high risk for OHSS. I was successful(lost the first, 21w w/2nd) with both IVF's, even after up and down dosing. Good luck and I hope this cycle makes all your dreams come true!! :)

  10. hi there - just wanted to wish you luck and say that i'm completely routing for you!!! push back on those doctors as you see fit, bc sometimes we just know our bodies and what feels right, more than doctors do. you've been through soo much, surely lady luck is making her way over to you as we speak :o)

  11. Sending many good thoughts your way!

  12. Good luck getting the big crop all ready to go. Your E2 must mean you're close to trigger time anyhow. Will will be there just in time!
    Personally I like it when docs change things up based on my questions. I want to be involved in the decision-making. That's why they started me at a higher dose of stims on each cycle, because I said I'd rather be aggressive and cut back on the dose if my response was too exuberant than worry that I wouldn't stimulate enough follicles. As it turns out, the dosage was probably just about right.
    Good luck getting some great eggs and more importantly some nice normal embryos from this cycle!

  13. I think the meds going up and down is not common but done enough. They just want to see that majority of your eggs are growing the same rates, your 20mm one might be of no use come Egg Retrival time, but if you have like 8 others sitting at 14, you'd want the 8 over the 1, ya know? It's hard to say, it will depend if that 20mm one continues to grow at rapid rate or not, but if the rest are growing nicely, hold on to that.

    Not much longer to go and all this insanity can finally end...I'm glad Will is coming...it really is hard to do it alone.

  14. So glad Will is on his way to you. Wishing you peace and strength in the coming days as you trigger and go through ER. Rooting for you!

  15. I just want you to know that I am rooting for you and I admire your courage for speaking up about the dosages.
    Everything is crossed for you both. It'll be great to have Will with you. I used to go to most of my appointments without my partner but since she has been coming it really really helps!
    Take care and good luck!

  16. I'm glad Will is on his way. I'm glad the doctors are listening. I'm glad it's almost retrieval time And I am rooting so hard for you.

  17. Tip for getting details on follicle size and numbers -- bring your husband in with you. Ask him to write it all down (say this within earshot of the sonographer). 9 times out of 10 she will say, "Oh I'll give you a printout afterwards so he doesn't have to do that" or "It's easier for me if I just give you a printout when I'm done." Then you'll have the exact information Dr. S. will see. Remember: you are a patient, but you are also a consumer. If you are paying big bucks (or if your insurance is), you have a right to ask for every bit of information about what is happening inside of you. Good luck!!

  18. Hi there,

    Glad you contacted them - I know I too would have been tempted to ignore the doctors and keep on the previous dose.

    It sounds like you are making good eggs.

    Fingers crossed for you both.

  19. Just wanted to reassure you that my meds went up and down during my CCRM cycle as well, and we ended up having success. I do, however, think it can only help to be on top of the process and to communicate as much as possible with Dr. Sch and the nurses. Hang in there! Pulling for you.

  20. I think you did the exact right thing by second guessing your dr. I do it all the time and each time I feel really really bad about it like you did but I think its naieve to think that the drs know best and remember everything (I wish they would though) becuase they are only human and we have to be our own best advocates in these situations. I think your follicle numbers and sizes seem really hopeful and I am definatley sitting here on tender hooks and hoping for the best for you. good luck, it is a hard thing to go through and made worse by the fact that you've been through it so many times before. xx

  21. I went down and then back up in both of my CCRM in cycles. Also, I said it before and I'll say it again, they rock, but you really have to be on top of your own care.

  22. sending love, Mo, glad Will be there with you-
    sucks to do so much of this alone.

    big hopeful hugs to you,

  23. It is so so hard to trust these doctors, isn't it, I mean I know they went to med school, then became obgyn then further speialization, but ye know it's hard to actually really trust them, or at least I found it next to impossible.
    So much so we reviewed our new protocol like 5 times before launching into it..
    it is hard, but you are not alone, we are all standing here next to you.

  24. Mo,

    I haven't commented for awhile, but since you asked for people with experience with this protocol to comment, I just couldn't resist.

    We did 3 rounds of IVF and my body reacted differently each time during the stimulation phase. The 3rd round (and our last try no matter what), my meds were lowered (cut in half), then some was added back a day or two later. I too was skeptical, but my doc was keeping a super close eye on me (daily u/s and blood draws rather than every other day). As a result of what seemed like the worst round of IVF we've ever had, we had more mature eggs than we ever had AND I am now 5 months pregnant with twins.

    Trust your doctor, try to let some of the stress go and realize that so little is in your control now....it really helps ease the craziness of yet another round.

    I've been following your blog for a year or so and I always think about you. I wish you guys the BEST of luck this time!!


  25. Hi, I posted once before about acupuncture and thought I'd chime in again about my experience there. In my 1st try at CCRM (with 4 previous IVF flops), I started at 150 and then moved down to 75. I was shocked b/c I'd been on 350 before, but I deferred to Dr. Sch. On the last day of stims I went up from 75 to 150. I had success that try, and on my next one.
    It's wonderful that you advocate for yourself, and I think part of what makes CCRM great is that they do care what you have to say (IMO). Wishing you all the best!!

  26. Sending good thoughts your way! You are doing great. Glad your husb is with you now.


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