Friday, December 5, 2008

BFP -- What Finally Made the Difference?

Sorry for the lengthy post, but...

I wanted to share my thoughts, for those of you wondering about your own failed cycles, and searching for anything that might help.

I don't know if I'll ever be able to say for sure what actually made the difference this time, but I do have some opinions:

CCRM - First and foremost, I truly have the magic of CCRM and Dr. Schoolcraft to thank. We did a lot of research and CCRM clearly had the best stats, and even though it was expensive and included the added stress of travelling during a cycle, I can say with 100% certainly, that it was worth every single penny! Unfortunately, even with the best stats and the worlds leading IVF doctors, there are still many people who fail at CCRM. It is certainly not the magic bullet for everyone, and if the stats are 65% success rates, that still means, 35% of people are failing. But I strongly believe that putting ourselves in the care of cutting edge doctors and lab certainly made the difference for us. We would have most certainly failed our last cycle, had we stayed with our local clinic. And not because they aren't good, they are the best clinic in the Northwest and among the clinics with a 50% success rate. They are well respected and certainly many many people succeed with them. But I know that we would not have, and for us CCRM was the biggest factor of all in our BFP success. I would tell anyone who is faced with the sad reality of knowing that this is their final IVF cycle, to run, not walk, straight to CCRM. I would not be a success story without them.

THE LAB - What can I say about the amazing CCRM lab that hasn't already been said?! Their lab is cutting edge using leading edge equipment and techniques. They are capable of doing CGH, they are experts at ICSI, they can do assisted hatching on embryos as late in development as early blasts, they can remove fragmentation from embryos, they developed the culture to grow embryos to blasts, they vitrify embryos, the list goes on, and they are on the leading edge on any new technique out there. Before we went to CCRM none of our embryos ever made it to blast. Not one. But CCRM was the reason that we finally had a blast to transfer. Not only that, but they were able to mature our immature eggs in the lab and do day 2 ICSI on them to give us the best chances. I strongly believe that you can get a good protocol anywhere, and yes, there are some RE's who are better than others and really know their stuff, but with the right research, knowledge, and meds, it's possible to get the right protocol for you at your local clinic. But you are stuck with their lab, and no amount of research or knowledge on your part can change the capabilities they have. So if you have problems in the lab with your embryos like we did, there is nothing you can do to improve your chances once the eggs leave your body. At that point it is all up to the lab, so it's paramount that you have the best lab you can. The CCRM lab is one of the best around! John Stevens, our embryologist, is the person who we will credit the life of our future child! Without him, and the magic of the embryologists at the CCRM we would never have gotten a blast to transfer, nor a positive beta.

SPERM SELECTION - Since we were faced with MF, and a morphology of 1% ICSI was a given, and something we have always done in the past. But for us, the capabilities to sort and select sperm in the CCRM lab were really important to us. Unfortunately there is not much out there that addresses this problem. We did have a DNA chromosome test done on Dave's sperm, which I would recommend to anyone faced with MF. The best company for this is SCSA diagnostics and you will get your results in about 3 weeks. Once we determined that Dave's sperm were in fact chromosomally normal, just with very poor morphology, we knew that picking the best sperm of the bunch would be important. We ended up using a process called PICSI, that basically consists on using a special dish for the sperm. The best mature sperm will bind to a special hyaluron strip in the dish, thus weeding out the duds. Next they used high magnification to narrow it down even further. Under high mag they were able to see which sperm were fragmented and which were not, in order to select the one's the looked the absolute best. From here, they used ICSI to fertilize. The PICSI dish is still in research stages and is controversial, but I have to say, I strongly believe that selecting the best sperm we could allowed our embryos to grow better than ever before. And I think without this selection process, would have arrested before day 5, like they always did in the past.

PROTOCOL -- We ended up finding success with the antagonist protocol, after two failed cycles of long lupron protocol. But I don't believe the protocol was the difference, because the number of eggs vs. number of mature didn't really give us improvement. We ended up on a much higher dose of stims (double) than I usually take which made me really nervous, and I'm not sure if it had any impact on egg quality either way, but it could have. As it stood, we ended up with a much higher number of eggs retrieved, but a lower percentage of mature, thus almost evening out to what we were getting locally. But CCRM did use some new meds in my protocol that could have improved the quality of my eggs. They put everyone on dexamethasone during the entire cycle, a drug to suppress any male hormones. They also include a daily baby aspirin daily after retrieval in their protocols, and they include estrogen patches after transfer along with the normally prescribed progesterone support. I can't say for certain if any of those small added medications did the trick, but they could have certainly been a contributing factor. Another factor that really helped this time around was the amount of daily monitoring to keep my E2, P4, and LH in check. I would definetly recommend extra monitoring if your RE isn't doing daily checks, and to stay ontop of your own numbers and what they mean, so that you know when/if things need to be changed.

ASSISTED HATCHING - I don't know which one of our three embryos actually made it, but assisted hatching could have played a hand. We transferred one advanced blast that they could not do assisted hatching on because the cells were all touching the shell. We also transferred one early blast and one late morula, both with assisted hatching. I really wanted assisted hatching this time, because it helps the embryos get out of their shells if they are not strong enough to do it on their own, thus improving chances of implantation. Most clinics will not attempt assisted hatching on anything past a 3 day embryo for fear of damaging it. But once again the CCRM lab is able to do assisted hatching with great success rates, on an embryo as late in development as an early blast. And this could have made all the difference. We just don't know at this point. But it certainly didn't hurt!

KNOWLEDGE - I truly believe that gathering as much information as you can about how IVF works, different protocols, and different techniques used in the lab can really benefit your cycle. If you understand what your options are, and have talked to others and gotten as much information and advice as you can, you will be able to apply this knowledge to your cycle in order to get the best results possible. I strongly believe in second opinions, and not just one, but many consolations with other doctors. Find out what they think the problem is, then move on to another doctors. Gather the information. Do research. And above all, be sure to get your proper diagnosis. For so long the doctors said I was unexplained infertility. Ladies, do not buy this. Keep working on it, until you have a clear diagnosis. Unexplained simply means that they haven't dug deep enough to find the answer. When I finally went to CCRM, even though I had many many tests at my local clinic, they did so many more tests. At first I was wishing I didn't have to do them, but after we got our results back, we learned so much more about why this wasn't working. You need to have a clear diagnosis in order to address and fix the problem. For the longest time we thought our problem was just Male Factor. So don't stop at the first diagnosis you get. There could be other things wrong as well. You could be missing something important. And if this is your last try, do not move forward, until you have investigated everything. After knowing what we know now, we could have avoided years of treatment and money and heartache. So I've strongly come to believe that knowledge in a key factor to success. Possibly the single most important.

ALTERNATIVE TREATMENTS - It is so tough to say what, if anything, made the difference to our BFP, but for this last cycle I added a few alternative treatments that we hadn't tried before. so it's possible that one of these things made a difference in our outcome. The first thing I did differently this time was that both DH and I took Royal Jelly every day to improve sperm and egg quality. We also both took a COQ10 supplement, switched to a prescription prenatal vitamin with extra folic acid and fish oil instead of an over the counter vitamin, and we ate an all organic diet of fertility foods. For a list, see one of my previous posts. http://waywardstork.blogspot.com/2008/10/fertility-foods.html
I also added Mayan Abdominal massage for 3 months, twice a week, up to the point to stimulation.
http://waywardstork.blogspot.com/2008/10/mayan-abdominal-massage.html
It's conceivable that any of those newly added factors could have helped make the difference this time. We also continued doing a number of alternative treatments that we did with our first two cycles, so these probably weren't the difference but they certainly could have helped. Those included acupuncture, acupressure, reflexology, castor oil packs, Yoga for fertility and couples (DVD by Brenda Strong), Male Fertility Supplements (FertiliAid), no drinking, no caffeine, and IVF Hypnosis (CD by Maggie Howell), meditation (DVD by Deepak Chopra). It really is tough to say what combination of factors improved our odds, but we are sure that some of them played a hand in our outcome.

BEING AN ADVOCATE FOR OUR OWN CASE - I truly believe no matter what clinic you are at, that you simply must take a hands on approach and be an advocate for your own care. Since this was our last shot, I have to admit, I went a little overboard on the control, but had it failed, I also know that I would have ended up feeling like I did everything I possibly could. And I wouldn't have been left wondering about if it might have been a different outcome if I'd only done something differently. Although CORM is a top clinic, they are also a big clinic, and a business. And like with any business, you are the customer. It's your body. You are the one paying the money. You are the one with everything to win or lose. So it's up to you, to take your cycle into your own hands. There were many times during the process where I had questions, or didn't feel something was going right, or had suggestions, or wanted to ask about something I'd heard, or wanted to remind them of something important about my case -- so I made sure to do just that. I emailed my nurse daily, I put what I thought was important in writing. I reminded Dr. Schoolcraft about the particulars of our past problems, I made notes for our embryologist about our past failures, I called to schedule meetings along the way to discuss our progress and just to check in. I'm sure some of the things were annoying and overboard, however, there were many times that my ideas or questions or concerns actually changed the minds of Dr. Schoolcraft and he made an important adjustment to my protocol because of it. Staying on top of my own case with the embryologist also allowed me the opportunity have 5 more eggs fertilized on day 2, thus greatly improving our odds. If I was to make one suggestion to anyone struggling with infertility, it's to do your own research, talk to as many women as you can who have gone through it and failed, find out the latest advancements with protocols and medicine, find out the latest advancements on what the labs can do, become your own expert, and never ever feel like you can't ask a question or give your opinion. Doctors are busy busy people. Things fall through the cracks, even at the best clinics. Errors get made every single day. Oversights are very common. So don't sit back and rely on your doctors to get everything right. You have more than anyone invested in this cycle. So I truly believe you have to be your own advocate. It made all the difference for our cycle.

LUCK -- Unfortunately, sometimes it just comes down to luck. And while the other factors are certainly more important and more influential than luck, it's hard to deny that it does play a big part in this whole ugly game. Why did I succeed while others failed? I'm well aware that even though we did everything that we possibly could have done to ensure a successful outcome, that I could have very easily failed once again. Our cycle could have gone either way. It really honestly could have. But this time, we got lucky. I guess there are a few different ways to look at luck. I wouldn't have gotten lucky if I didn't put myself in a position to succeed. If I didn't do the work, do the research, travel all the way to CCRM, advocate for my own case, and spend all the money on another cycle, I wouldn't have been in a position to get lucky. I wouldn’t have gotten lucky if I hadn't of played the game. But sometimes you can play and play and play and still not win. Sometimes the cards just aren't in your favor and you can spend your whole life trying, only to wind up right back in the same spot. We knew this going in, and we were prepared to walk away if this cycle failed. We were prepared to throw in our cards and leave the table forever. But magically, somehow, we got lucky. Luck is one of those things that isn't fair, and I hate to think that it even plays a part. But it does. For so many years luck was not on our side, but we went ahead anyway. We forged on, and rolled the dice one last time. And as they say in Vegas... sometimes you just get lucky.

So good luck, good luck, good luck!!

12 comments:

Sky said...

Lisa, that was not only a (deserved) endorsement of CCRM but it was a very thorough assessment of your cycle and factors you believe were instrumental in your success.

The one that resonated most with me was the "being your own advocate" and doing your own research.

I am often so stunned with folks who will do extensive research on which flat screen TV to buy but will visit whichever doctor for a suspicious lump and not take one moment to read up on a condition they might have. It's sad when your health is far less interesting than knowing if Sony is better than Toshiba.

And the same is true for fertility cycles. Most of us pay out of pocket for this and succeeding is about the baby we want - what's more important than that?! Isn't that worth reading up on what you're facing and getting involved in your own care?

You're a shining example of the success that comes with perseverance!

Continued luck on what seems like triplets? Yikes!

Anonymous said...

lisa Iam so moved by todays blog. I didn't think I could be more moved after seeing your family video but boy was I wrong .I am so proud of you and dave!!!You are one of the most extrodinary persons I have had a pleasure to know not in a personal way but in your shareing with us everyday!!! thank you, thank you.You have learned more in this jouney than most people learn in a lifetime.Your blog has been a gift to everyone who read it.The universe is happy today we will all do a happy dance!!! Barb Mckeag

Nikki said...

Spot on! Very well written post Lisa - I totally agree with everything you've said.

None of those points can alone bring success without the other points. All our ducks need to line up in a row, all stars need to align.

Great post!

musicmakermomma said...

Thanks for putting all that down, it is nice to see what worked for someone! So much of IVF is "voodoo", we just go to the doc and hope for the best. I know so much more now than I did a few months ago - and if I had realized this whole network was here a few years ago when I was doing IUIs and clomid it might have helped so much! Knowledge is power.

Linda said...

I am so glad that CCRM had a big part in getting you your miracle. Even though I got a bfn my 1st cycle there, I have no regrets going there at all. Kudos on a well-written post. :)

Lisa said...

Awesome, awesome post. I have two IVFs and two chemicals and one canceled IVF under my belt - I am really looking for answers. I have a phone consult with Dr. Schoolcraft on Jan. 6. I may try another IVF at my clinic if she can come up with a different protocol I can believe in. I really appreciate the sperm selection piece - we have male factor too but I wonder why I cannot stay pregnant...at any rate, I digress, sorry, CONGRATULATIONS!!!!

elizabeth said...

I left you a comment a while back asking you to email me, but I'm realizing that I never gave you my email address. I'm brand new to reading blogs and challenged when it comes to the computer in general. Anyway, I have been so inspired by your story and all of the great information you have provided us. I would really like to ask you some questions if you would be so kind to email me. elizabeth@mcrdev.com. I have a phone consult with Schoolcraft in January. Thanks!!

Arpee said...

I learned a couple new thing today, thanks to you, Lisa...
- fragmentation can be removed
- PICSI for sperm selection

Where in the world did you get those info? You must be an excellent researcher!

COngrats on the BFP again and wish you the best as the triplets grow...

If you can, please share tomorrow's US results!

Arpee said...

I learned a couple new thing today, thanks to you, Lisa...
- fragmentation can be removed
- PICSI for sperm selection

Where in the world did you get those info? You must be an excellent researcher!

COngrats on the BFP again and wish you the best as the triplets grow...

If you can, please share tomorrow's US results!

Just Me. said...

I have to agree with what has been said. Though I'm not from the States but I've heard soo much about CCRM and this Dr Crafty guy! And now I've learned a lot more from your post today.

Tho' I'm finally pg, I have never stopped wanting to find out what others are doing or the protocols that you guys do in the States. I've been mucked around by 2 REs and it was such a painful experience. Knowledge is power and the more you know, the more informed you become, the more you know that you can slowly "start taking control", iykwim.

Anyway, congrats!!! Enjoy the next 8months.

((hugs))

Anniep said...

I agree with you 100%. CCRM was the best decision we could have ever made. Happy Holidays!

theempressandthefool said...

I'm glad I stumbled across this! I am 34 and turning to CCRM for a cycle at the end of the summer after multiple failures elsewhere. I'm on the brink of DE, and this offers some reason to hope.