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Friday, May 17, 2013

regret management


Thanks to my friend, Alicia's sage advice...I've adopted a new infertility mantra.

Follow the path of least regrets.

Unfortunately, none of us have a crystal ball which means it's impossible to know which decision is the right decision until you know the outcome. That being said....it's all about regret management. What decision will I regret the least when this IVF cycle is over.

That being said, we've decided to jump ship.
I need to have 100% confidence that I'm getting the best treatment possible. CCRM is one of the best (if not the best) clinics in the country. No one has refuted that...not even my own local doctor. With this IVF attempt, I believe I will have little baby embryos to consider. They should be handled with care by the best embryologist and stored in a world-class lab. 

Having made the decision to charge forward with the more expensive yet more esteemed clinic, I feel a sense of renewed hope. As I mentioned, I love my local clinic but all of the changes to my protocol after my consult at CCRM caused me to lose some confidence. This process is difficult enough without more doubts and uncertainties creeping up. At the end of the day, I have a feeling deep in the pit of my stomach that if I stay where I am...I'm not truly giving myself the very best chance of success.

Even though having the doctors disagreeing about drugs, testing and protocols was stressful, I'm glad that I am playing an active role in this IVF attempt. I'm advocating for my health which is not an easy thing to do. Last time, I trusted 100%. I didn't try to learn the in and outs of IVF, testing and protocols. I figured...I'm not the doctor and they do this all the time. What do I know? 

But in hindsight, the squeaky wheel always gets the grease. The one who speaks up, questions, seeks answers - gets the most attention and best care. I believe that now. And I don't think I'll ever go back to being passive when it comes to my health. 

Many of you have asked why we're only doing IVF once. A would be fine with discontinuing fertility treatments now and living without children. He truly wants to leave infertility behind. To move onto the next chapter of our lives. But he knows that I want to do IVF. So our compromise is that we will only do one full IVF cycle and FETs until our frozen embryos (if we are lucky enough to have any) are gone. We both agreed to this.

So A and I are off to Denver in 2-3 weeks for our one day workup (ODWU). The ODWU is a 7-hour visit to CCRM which includes orientation, intro to our new nurse coordinator, semen testing, ultrasound, IVF consult, hysteroscopy, financial coordination meeting and other labs and tests. Some moments, switching clinics feels daunting. Others, I feel excited. Excited because of the new hope that creeps up. Hope that this trip might bring us closer than we've ever been to bringing home our baby.


Monday, May 13, 2013

when doctors disagree


Thank you to everyone who weighed in on my local clinic vs. CCRM dilemma.  
You may be wondering where we are with this decision.
Unfortunately, no closer to clarity than we were last week.

My local RE, Dr. M, is now back from vacay and wanted to talk with us. I had a phone consult with him today on my lunch break. A was not on the call as he had to work. However, A is back from the strike team. They put out the big fire in Ventura. Your prayers were much appreciated.

Here's what Dr. M had to say.

1. The 2010 SART data reflected a really bad year for my local clinic and a really good year for CCRM. In 2011, SART data shows the local clinic with a 3.5% higher success rate than CCRM for my age group.
True story. But I take this with a grain of salt because I think CCRM's cases are tougher.

2.  In regards to Dr. Surrey's concerns with Diminished Ovarian Reserve, Dr. M said that he looks at FSH (mine was normal), AMH (mine was borderline) and antral follicle count (mine borderline) to predict how a patient's ovaries will respond to stims. We now know that I don't respond well and that I need an aggressive protocol. 
Basically, what I take away is that he doesn't think it matters whether I'm borderline DOR or not...as all of this is used to determine protocol. And we already know I need an aggressive one.

3. Dr. M said the reason we tried the long Lupron cycle last time was to suppress my endometriosis. Unfortunately, it suppressed the stims as well. He is recommending the most aggressive protocol for me now - no BCPs, Ganirelix and estrogen patches to synchronize the follicles, and max dose of stims - 225IU Follistim and 225IU Menopur.
I'm a little skeptical because he changed my protocol now that I got a second opinion. Added estrogen patches and removed BCPs. Why? Did the other doctor point out something that he missed? Was he not really feeling 100% with his initial recommendation? I know I have trust issues (my personal baggage) but it makes me wonder. 

4. Dr. M does not think I need a sperm fragmentation test. He doesn't see any value in the information it will provide. Plus, it only tests 100 sperm. A has a good sperm count and his motility is fine. His morphology is borderline. But that is why we are doing ICSI. He said that with the roughly 10 eggs he hopes to get...there will be plenty of good sperm to choose from. I said Dr. Surrey would put A on supplements if he saw anything odd with the test. Dr. M said A could take a multi-vitamin.
I'm not sure how I feel about this. He was rather dismissive and I don't really know much about this test to have an opinion one way or the other. 

5. The beta integrin 3 conversation was really the most interesting and controversial part of the discussion. Just like Dr. Surrey, Dr. M has also published papers on this topic. He said a whole lot about this subject that would be hard to paraphrase. But here's the gist. The beta integrin 3 test was created in 1950 and it's flawed. Many RE's do not test for this anymore because the tests are often inconclusive. The beta integrin 3 can be absent one month and present the next. Since it is tested by taking a biopsy of your uterine wall, you can't do it the month of your IVF cycle. 

He said the study concludes that a lack of beta 3 results in poor prognosis to IVF. But he doesn't think I need the test. He can just put me on letrozole, just in case. He sent me the study but I don't speak medical too well. Here is the conclusion directly from the study. 

We report an association between low pregnancy rates in IVF and 
an abnormal integrin expression by EMB obtained in a natural cycle. 
A lack of integrin expression was highly associated with endometriosis. 
Unexplained IVF failure in a subset of women with endometriosis 
may be avoidable using a simple 5-day treatment of the 
aromatase inhibitor, letrozole. Recognition of the importance of 
undiagnosed endometriosis in women with IVF failure, 
recurrent pregnancy loss or infertility, offers enhanced opportunities to treat patients 
with suspected implantation failure. Based on our findings and previous 
studies in IVF, the use aromatase inhibitors 
might improve the IVF success rates in a subset of women 
with endometriosis. Further, integrin testing may be indicated in 
women with unexplained infertility or mild endometriosis to 
better define the risk for unanticipated implantation failure with ART.

Great info, right? But to this I say...where was my letrozole before this consult? Why wasn't this being considered before since he knows that I have endometriosis. He said my endo isn't "that" bad so doesn't even think it will be an issue.

6. Dr. M did say that he thinks we should check one more thing. He'd like to measure my growth hormone via an IGF-1 test. If it is low, he will add growth hormone to my protocol.
I haven't been able to find anything on Dr. Google about human growth hormone and infertility so I'm left scratching my head on this one.

7. Lastly, upon my suggestion, he said it wouldn't be imprudent to do a hysteroscopy since it has been a year and four months since my laparoscopy.

In conclusion, Dr. M said it comes down to whether I want to work with him or Dr. Surrey. He did acknowledge that CCRM is one of the best clinics in the country but he also thinks his clinic is good. When I told him that I've heard that CCRM's labs and embryologist are the best. He didn't disagree.

I think I already know in the pit of my stomach what the right decision is. But going to CCRM just feels like starting completely over again from the start. More paperwork. All of the tests over again. So much more money. Sigh. A and I will regroup later this week and make a decision.

In the meantime, has anyone done the Ganirelex/Estrogen patch protocol? What about the letrozole (or Famera)? Any thoughts on Dr. M's perspective versus Dr. Surrey?

P.S. Love you guys for helping me navigate all of this craziness. It helps so much to put it all out there and hear what y'all think. 


Sunday, May 12, 2013

i love you, mom.


My mom is a private person. Like my husband, I don't think she totally digs me putting my life on the Internet for the whole world to see. But hopefully she'll bare with me here while I put her on the spot.

Mom.
Thank you.
For all that you've done to give me the best life possible.
For your sacrifices. 
For your love.

You are my best friend. 
The person that I call when I'm at my lowest.
And at my highest.

You understand me.
You accept me.
Even with all of my flaws.

You are always in my corner.
Cheering me on. 
Sometimes silently. Always fervently. 

You are the person that I strive to be more like.
Despite our many differences.

You are so creative. 
So wise.
So strong.

You are my mother.
And I'm so very blessed for that.
So very grateful for all that you have done...and continue to do for me.

Happy Mother's Day!


"A best friend is someone who knows everything about you and still loves you".


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