Friday, December 19, 2008

A Plan

I know it has been a little bit since I had anything worth while to say. I have been doing ok, I guess. I am not in the Christmas spirit, not even a little bit. We did not even decorate the house this year. We had very little shopping to do, which was good. I am going to make homemade candy this weekend and I did do holiday cards, but that is about it. My kids are finished with exams and I am finished tutoring until January and am looking forward to the little break. We head up to Bu.ffalo on Tuesday.

I had my WTF appt on Monday with Sh.ady Grove and while it was somewhat informative, I found myself walking away feeling frustrated. Dr. M was compassionate and asked us to keep trying. He agreed that the Ganirelix protocol did not do what we were hoping (more eggs) and that we would go back to a long Lupron if we ever did another fresh. He seemed kind of stuck on the fact that we are "new patients" to him and we "only" had one failed cycle with him and we were hoping he would look more at the big picture. He totally dismissed immune issues, beta 3 integrin (sticky glue), and basically did not see the need for anymore testing. Overall, he suspects a chromosome problem and said we are more prone to one because of the severe male factor. However, he doesn't think we are candidates for any type of genetic testing at this point. He said we don't make enough embryos to risk sending them out. He is not a big fan of PGD and said that they are still in the learning stage of CGH. They will be offering eventually, but no time soon and in his opinion, we are not making blasts, so no CGH for us. This is where I was getting frustrated because I felt he wasn't offering us anything new to get us over the hump. His overall plan:

1. Join their shared risk program - $22K 6 fresh cycles, unlimited FET, 100% refund.
2. Bring our 6 frozens over and include them in shared risk.
3. Try to thaw all embies and grow to blast.

That's it. He wasn't very optimistic about an FET - puts it around 20-25%. I was frustrated. I felt like he was kind of dismissing our frosties and putting more emphasis on shared risk and more fresh cycles.

Our consult at our old clinic with Dr. P was really, really great. Everyone was so happy to see us - it is so warm and friendly. We got hugs from the nurses and receptionists and billing and everyone was sorry to hear we had another failed cycle. I thought I was over needing the warm and fuzzy, but it felt so good to feel so cared for.

Dr. P was completely understanding about us seeking a 2nd opinion and doing IVF elsewhere. I was nervous about that and he put my mind at ease. We talked about the failed cycle and he also said no more anatagonist protocol for me. For another fresh he said long lupron or possibly microdose. He said he was going to pretend that all three cycles failed with him and treat us accordingly, which made us happy because any way you slice it, we have still had 3 failed IVFs. He thinks we are still very good candidates for IVF and have a good prognosis. He also feels that we have some great frosties and is much more optimistic than Dr. M about it. He is excited about doing an FET because he thinks I might just be one of those people who responds well to an FET.

Dr. P is a little concerned why I am so prone to polyps and is wondering if it indicates a possible lining issue. He agrees there could be chromosome issues, but is hesitant to jump right to genetic testing. He said PGD is a very flawed science. It misses a lot of abnormalities, there are a lot of false positives and false negatives and PGD has not been found to increase pregnancy rates in IVF patients. He thinks it has its place if there is a known genetic issue that they are screening for. He admitted to not knowing much about CGH, but would be open to genetic testing under the right circumstances. He thinks we need to focus on getting some blasts before we worry about that though. He also dismissed immune issues/testing and beta 3 integrin. Dr. P doesn't believe there is good science or data to justify testing or treating either. Supposedly, after more than a decade of research on both, there is no increase in PG rates for those undergoing immune therapies or Depot Lupron for Beta3. He also feels there is a huge conflict of interest that only one lab in the country does the beta 3 screenings and they also publish all the studies. He discussed how results can vary wildly cycle to cycle and he believes if it worked and truly increased success rates, every RE in the country would screen for these 2 things. He doesn't believe in testing for the sake of testing or "going fishing" as he put it. I just don't know what to believe in this department as there are so many varying opinions in the field.

Anyway, without further ado, his plan:

1. Repeat SIS on Tuesday to check lining. B/W to screen for insulin resistance and check my prolactin.
2. Order a DNA karotyping for me. Revisit genetic testing pending results.
3. Do a mock cycle before my FET. This means prepping my lining for an FET using Estrace and Endometrium, but instead of doing a transfer, he will do an endometrial biopsy instead to check my lining. I am not sure exactly what he is looking for, but he said "abnormalities" and to see how my lining responds to meds. It always looks great on u/s, but he wants to see it under the microscope. He said tweaks can then be made and if there are abnormalities, they are treatable. I have never really heard of this before, but if it means learning more, then I am all for it.
4. Do an FET cycle after mock cycle. Thaw all 6, culture to blast, transfer 2 or 3 blasts. He feels confident we will get some blasts. Fingers crossed.

Overall, we walked away feeling much more confident about Dr. P's plan. He seems more thorough and more optimistic about the success of this FET. Plus, I feel good knowing my embryos were created there, frozen there, and were the result of 2 good cycles. I walked out feeling like my questions were answered and like the weight of the world had been lifted from my shoulders.

I have b/w and SIS on Tuesday and I will do my mock cycle in Jan. FET in Feb pending results all the testing.

I feel like my mood has improved slightly since meeting with him and as I have said before, I do best when I have a plan. Now, I hope we get some answers!

Whew, that was loooooooooong. The end.


Clio said...

In this post, it's like you took me along for your ride all the way.And in the end, I was also feeling better and more hopeful with you. :)
It also seems that Dr. P's clinic feels right to you, so that is very important. The warm and fuzzy is good too. That they know you there, that they sympathize.
sounds like a good plan. Happy to see you feeling better.

ashley said...

My husband and I both had a karotype done and I'm glad that your doctor is going to finally order one for you. I am so happy you are feeling better about the next cycle and have not given up. It always helps me to have a plan also and to know the next steps we have to take, should we have to take them. Your doctor sounds like he truly cares about the two of you and is going to do what it takes to get you guys what you've been wanting so badly. Keep us posted. And although I'm not much in the spirit either, Merry Christmas! Hope this next year brings you much joy!

Anonymous said...

It sounds like a good plan, a thorough plan, and it sounds like Dr. P's clinic is a better match for you - and I think that's important, that you feel really comfortable with where you are.

I've heard similiar things about PGD testing - it being such an inexact science that it's less helpful than it should be. The mock cycle plans sound intriguing, and I'm looking forward to hearing more about how that goes.

Hang in there - it does sound like you're on the right track, and this new plan - or set of plans - sounds like a good one. You're in my thoughts.

Mo and Will said...

Glad you're getting lots of information from two sources. We had karoytyping done and have been told similar things about PGD - that despite having three chromosomally abnormal pregnancies, it still probably wouldn't improve our chances because it is so problematic and has false positives and is traumatic on the embryos. Glad Dr. P's gave you such thorough answers and that he was open to your having gone elsewhere.

Good luck with your SIS and with moving forward. Hang in.


Anonymous said...

I feel ya. I'm at IVF 3, and not a lot of room to move. My Doc is very mainstream and conservative, which I realize feels right to me (in that she only goes with good studies, not hunches).
It's too bad they won't let you just go whole hog with the genetic testing--that seems like such a no-brainer to me.
Keep us in the loop!

bunny said...

you have certainly done your due diligence. it must feel good to have so much information and a good plan and a good doctor and clinic to work with. here's to the promise of new beginnings!

Straubles said...

I really appreciate you sharing your journey. somehow IVF can feel so isolating and awkward. like sitting in the drs. office with other "want to be parents" and the whole time wishing you were somewhere else. just reminds me that we're not alone--some are further along on this rocky road of infertility. thanks and hang in there.

Nicole said...

Thanks Emily for your support on my blog...thought I'd return the favor! Have a good weekend and we'll be thinking of you!

via L&F

Sky said...

Ugh! What frustration, but you're moving along - and that's great.

I do know that CCRM does CGH testing and they're one of only about 3 clinics in the country who use vitrification. I know Jill (http://desperately had CGH testing done at CCRM (as well as an endometrial biopsy to rule out the "sticky glue" issue) and they wound up with 2 chromosomally normal embryos which were transferred and Monday she's having her first ultrasound after the BFP.

So I don't know if CGH is something you're interested in but CCRM appear to be at the cutting edge.

However you proceed, best of luck to you - and I just know you are going to make it, you'll see! :)

bb said...

I feel the same, I always feel best when I have a plan! It sounds like getting 2 opinions was really good for you. And I also understand about the warm and fuzzy. I SOoooo need that!! I hope things continue to look up for you. And Merry Christmas!

Lost in Space said...

I'm so glad you were able to get 2 different opinions, Emily. I can feel your frustration with Dr. M. To just simply "try again" with no additional information is hard to do. I do like that he does think it will happen for you and gave you the option of shared risk. If he were discouraged I don't think he would have put that out there.

As far as your plan with Dr. P, it sounds like he is addressing your concerns and taking some action to find another piece or 2 to this puzzle. Sometimes just knowing the direction you are going is enough to make the next steps a little easier.

You have been in my thoughts as I know this holiday season is likely not an easy one right now. Many hugs.

poppy.f.seed said...

Sounds like a lot of info. I would have wanted to know about changes, as well. I am glad to hear you'll be doing FET. I found it to be so much easier, and more relaxing then IVF!

Just Another Infertile said...

Dr. P did sound like he was a little more thorough with his plan and covers more bases.

I couldn't tell from your timeline, but has Sean had genetic testing done? I'm assuming he did because you were thinking of getting some done yourself. It was one of the first things our RE ordered when we had such severe MI. The karyotyping can tell you a lot, but it is only 1/2 of the picture.

I'm glad you have a plan to go forward with. I know that always makes me feel better.

Lisa said...

Wow, Em, what comprehensive information you got!! I'm so glad you felt comfortable with Dr. P and that you have a game plan! I really like the approach of doing a mock cycle and the endometrial biopsy. The more information they have, the better!

Jill said...

It is a great thing to have a plan. I'm so glad you got two opinions. You are in my thoughts.

Jill said...

Just wanted to reiterate good luck to you. I hope the new plan is successful. :-)

Leslie Laine said...

Sounds great!! I'm so glad that 2008 is ending on an upswing!! Thinking of you!!

M. said...

Wow. I think Dr. P's plan sounds better, too. And I hate the way the first doc treated you -- he seems rather dismissive. You need someone who's going to give you a hug, hold your hand, and listen to you. Dr. P. is your guy :)

And I'm so glad you're doing additional testing. I think you've had endo biopsies before, right? I think you've had a few, actually, if I'm remembering correctly. If you haven't, ask for a local. It made my second one much more bearable. And that second one was how my RE diagnosed my lining issues. So it seems like a good idea to me!

Anyway, I'm glad you're feeling better. I'll keep praying that the next cycle is your lucky one :)

MP1648 said...

That sounds like a good plan - I still have hope for you too!!!

I am thinking of you as well through the holidays and while I am glad to have met all these great women in '08 - I am ready for it to be over and to start fresh!!!

RMCarter said...

A new year and a new plan. I am praying for the best for you. I hope that having this new plan will help you get through this holiday season with a little hope.

Thinking about you.

Chhandita said...

Praying that things work out for u..