nav

Sunday, May 5, 2013

IVF decisions will be the death of me


After our consult with CCRM,  I wrote an email to my doctor and cced my nurse coordinator. The email informed Dr. M that we got a second opinion which brought up some questions that we'd like to discuss with him. Immediately, I received an out of office reply that he won't be in until next week. About 15 minutes later, I got a call from SC - our IVF nurse coordinator.

Have I mentioned that I love this woman? She has been way more than just a nurse coordinator to me over the last few months. She's been an advocate, a trusted friend and a bright light at the clinic. Several years ago, my friend MTC went to our clinic and recommended SC to me. I'm so glad she did. We are grateful to have her in our corner. 

I told SC about our call with Dr. S and she understood our concerns. She scheduled an appointment for A and I to chat with Dr. M and get his perspective on the additional testing and protocol that Dr. S suggested. But here is the kicker. She said that she is going to tell Dr. M that she'd like to sit in on our meeting if it's okay with me. She is interested in hearing more about the beta antegrin. SC has heard of it and trusts that Dr. M is up to date on all of the same studies. She probably has a million other things to do. But that is just her....she wants to be a resource for her patients and be as knowledgable as possible.

She also reminded me to listen to my gut. I needed to hear this. She always knows what I need to hear. That being said, I am fairly certain that I'm going to push for a protocol without BCPs. A also wants to ask about CCRM's numbers. He thinks that science and technology is what it is and he doesn't think CCRM's stats can really be that much better than our clinic.

Even if the stats are right. We've already paid for our cycle at our local clinic. We believe our clinic is the best in our area. We believe we're getting good care. We are glad we got more information and fresh perspective from CCRM. But now we just have to continue to have faith and give this one more go.

-------------------------------------------------------------------------------------------------------------------

The post above was written late Wednesday night - a few hours after our second opinion consult. Before I had a chance to read all of your comments. Before I had time to think it through. Before I had time to speak to my closest friends and my mom. Since hubby is gone, I haven't discussed anything with him. But here is where I am at the moment.

Everything above is based on emotion. I love my IVF nurse coordinator. It hurts to think of forking out more money to go to CCRM. We've already started down this path with our local clinic so it would be easier to stay the course. Traveling to Denver adds a whole new level of complexity to an already difficult situation.

But my head is telling me that I can't ignore those numbers. If A and I agreed that we are going to try IVF only once and give it our best shot. Isn't our best shot at CCRM? I've always said that I don't want to have any regrets. I'm afraid that I would have regrets if we stayed at our local clinic and our one and only cycle failed. I might feel differently if we were able and willing to try the local clinic and then if it fails...go to CCRM for cycle number two. But there won't be a cycle number two for us. So making this decision is so utterly important...the future life of my child could be hanging in the balance. 

That being said, I need to know two things. 
1. How much more would we have to pay to switch clinics and go to CCRM now? 
2. Are CCRM's success rate numbers legit?

1. Costs.
Our local clinic 
Cycle fee including ICSI - $12,550
Genetic Testing (outsourced to Natera) - $3,700
Meds - $3,500
TOTAL - $19,750

CCRM
One day work up - $4,500
Cycle fee with ICSI - $16,110
Genetic testing (in-house) - $6,875
Meds - $3,500
TOTAL - $30,985

I'm estimating a conservative travel budget of $3,000 (4 flights + 10 nights in hotel) and we'd lose about  $1,000 in our prepaid cycle fee at our clinic for a cancellation fee and services rendered prior to my cancellation. So we are looking at an additional $15,235 to jump ship right now.

(As I type this, I'm pissed off that our insurance doesn't cover IVF. It is bull sh&t! Infertility is in the same category as breast augmentations. Seriously?!? Last time I checked, I have a legitimate medical condition preventing my body from functioning properly and allowing me to conceive a child as it was meant to. Yah, not that same as wanting a big rack. Just sayin'.)

2. The stats. (*All stats below are reported from Center for Disease Control - 2010 SART report.)
Paying the additional money (if we can come up with it) only makes sense if CCRM is really going to give me 38% higher odds of success. 

A friend said this to me last night. If I stay at my clinic, a live birth is possible at 26.5% and if I switch to CCRM a live birth is probable at 65.1%. Do I want possible or probable? 

But the saying comes to mind...if it sounds too good to be true, it probably is. Is believing in CCRM's 65% live birth success rate like believing in magic and unicorns? 

Here are the 2010 success rate stats for the rest of the Cali clinics in my age group which I feel like I should reconsider. These clinics are comparable to my clinic and CCRM in terms of volume. The clinics in black that have the higher numbers are in Southern California so they'd require hotel and airfare just like CCRM. The ones in green are driving distance. But don't have significantly higher results than our clinic to be worth the trouble of commuting. 

Beverly Hills - 82 fresh cycles - 36.6% live births
Kaiser Fremont - 125 fresh cycles - 39% live births
UCSD La Jolla - 105 fresh cycles - 49.5% live births
Stanford - 125 fresh cycles - 19.4% live births
Redondo Beach - 104 fresh cycles  - 39.4% live births
Pacific San Francisco - 128 fresh cycles - 18.8% live births
UCSF San Francisco - 129 fresh cycles - 36.4% live births
FPNC San Jose - 81 fresh cycles - 25.9% live births
San Ramon - 150 fresh cycles - 31.3% live births
PRC Torrance - 83 fresh cycles- 41% live births

Back to CCRM...I've seen threads on infertility forums claiming that CCRM only accepts "easy" cases so their numbers are skewed. But others have said that is not true. Intuitively, it doesn't seem true as I know some bloggers with tough cases that have been treated at CCRM. But how can they really be that much better than everyone else? How do I find out if these numbers are real? What does CCRM do differently that yields such better results? This is what I'm grappling with at the moment. 

If you have done your homework on CCRM and their stats, please leave your findings in the comments. I'm clearly so conflicted and would appreciate your help.

P.S. If you're still reading this, you're either a saint or a fellow infertile. Anyhow, thanks for sticking with me. 


59 comments:

Charity said...

Just reading this got me all angry too. It just blows that the insurance will cover everything except IVF. Our insurance even covers elective and non elective abortion. IVF should be covered as long as it is deemed medically necessary. I will be praying for you Jessah that God will lead you and A to make the right decision for your family. If it matter any I want to say that I have heard nothing but great things from CCRM...their numbers are great and I have heard about radical success stories for women that were even on their 5 and 6 round of IVF...but first at CCRM. I know what ever you decide you will be blessed in.

Charity said...

Also to verify the numbers check the SART data base. I believe they were close to that when I checked in 2008.

Mrs Green Grass said...

Okay...this might be confusing because I'm thinking as I write.
I have not done extensive numbers research, but here's what I think. Many of the regular clinics also don't accept very difficult cases so it's very hard to compare numbers. Are the numbers you provide for your specific category? Ccrm cannot make up their numbers, but I know that some clinics so not count any cycle that was stopped due to high estrogen, ohss, etc. I don't know if there is a standard rule or not.


Many times on a first cycle, the docs do a typical med course and see how it works. For #2, they change things based on the results. I imagine ccrm has a lot of multiple IVF patients and they also do more testing...which would allow more tailored protocols.

It sounds like your doctor is willing to really think about your protocol which potentially could boost your percentage.

Another huge favor in success is the lab. Growing and freezing the embryos is an art and careful science. Some labs are just better than others.

I don't have an answer, but I agree that you should trait your gut. The numbers are not everything, but they are important.

(I went to SDFC.)

Suzanne said...

You are going through my thought process that I've been dealing with the past 3 months. It's awful. I also have an amazing doctor and nurse that my heart is saying I should stick with, but their stats are no where close to CCRM. That said, I was told BY CCRM that my odds with them were only 20%. Even though their stats say differently. This is what I've struggled with. Paying the extra money when the odds aren't really that much better for me? At least according to the doctor there. Did Dr. S tell you what he believed your odds were should you use them and their protocol? I still may go to CCRM, I just chose to stick with where I am for at least this next round. Your heart may be telling you something different, but I'll be here with you following and cheering you on whatever you decide. Just thought I'd share how we came to our decision. xo

Just T said...

We were recommended to CCRM from our current RE. UNFORTUNATELY that is not an option for us anymore afterall the money we have spent to date. My RE did say c c r m is the best in nation.

Anonymous said...

I have walked in your shoes and made a similar decision. I was at Cornell with dr S and was deciding between another cycle at Cornell , CCRM or RMANJ. ( DE cycle)
We choose RMANj bc it was such a slight difference and we would not have to travel and have the additional exp and stress. ( CCRM and RMANJ are basically the same cost ). I can tell you that CCRM is am excellent clinic and they do not just take the hard cases and there stats are real and 2011 stats are more impressive.

I would choose CCRM In your case if you can make it work and if you really only have one chance.


Best of luck to you

kharini said...

Decisions are very hard in this path because there is really no way to know. I hate that! I have been there many times and the stress of possibly taking the wrong next step just kills me.

Anyway. As much as I have not had a good and successful experience there, given your case, I would still go to CCRM. You need an awesome protocol and you need an amazing lab, so when those eggs come out, they have the absolute best chances of survival and growth. CCRM is a lot more expensive and it takes a lot out of you having to travel there, but I believe you will get the best chance there.

CCRM takes bad cases and I believe most of the women are going there as their last stop at IVF. If CCRM can't make you one good embryo, most likely no one can. If you would have a ton of eggs to work with and would be a good responder that can spare a few eggs, then a not so top notch lab wouldn't matter that much, but you need all your eggs to be in the hands of the best embryologists and best lab possible. And CCRM is good at making eggs and growing them into embryos. That's really what I would be focusing on.

Say you go with your local clinic and goodness forbid you don't succeed, will you be wondering what would have happened at CCRM? And then what? Spend even more money going there for a 3rd try?

Decisions are hard and it seems like your husband is skeptical about the numbers... give yourself some time to think this through.

So if I'd be you, I would get those eggs, make them into awesome embryos and freeze them. Then figure out what's going on with your endo, let your body calm own, see if you need a lap, if you need Depot Lupron, etc, etc.

Anyway, those were my 2 cents.

Hang in there Jessah, once you make the decision, it will be easier to stop thinking about it and just do what you need to do. Hugs!

FaithTrust IcsiDust said...

That sounds like such a tough decision! Thinking of you and hubby & hoping you find the answers you need. But you'll make the right decision either way!

Laura said...

I understand your internal battle over this. We were in a similar situation, but not quite as complicated. Although, at our local RE we were in a study that gave us 2 rounds for the price of 1, and that was a little hard to walk away from....Ultimately, we did leave our local RE for CCRM. Here was our thoughts about going with CCRM...

First thing, the stats of our original clinic were also much lower than CCRM, MUCH lower. This is our first cycle, but we figured if we end up cycling less, we will end up spending less money in the long-run. Many people are 2-3 rounds into the process when they finally switch to CCRM, and we were hoping to not be in that situation. Every part of me feels like I will do less cycles at CCRM and end up saving more money in the long-run. The other side of that though is that I DID NOT like our first RE, he rubbed me the wrong way, and I just had an awful feeling in my gut about him, and his entire staff. That made our decision easier as well. We did end up losing several thousand dollars by making the switch, but I don't regret for one second what we did.

It has ended up costing us ~$10,000 more to go with CCRM for this first cycle, and we only live an hour away. It's still more expensive, no matter what your situation looks like. The travel can be hard physically, emotionally, and financially too if you're coming from out of state.

I think this meeting is a great idea with your current RE, it is an important thing to give him the chance to hear what you were told, and to see if he thinks he can offer you a protocol that can compare.

As far as the stats go, I do believe in them. I have also heard the thought that CCRM cherry-picks their patients, but I don't think it's true, I've read soooo many stories about successes with very difficult situations. I do know that the way that CCRM freezes embryos is much better than many places, they have perfected it so that they survive thaw 95&-98% of the time, which is pretty incredible. They have had to master that because they do so many FETs because they see so many difficult cases. At one of my ultrasound appointments, one of the nurses told us that most of their transfers that they do are frozen. On that particular day, every single transfer they were doing was an FET. They have so many difficult cases which means more testing of the embryos first, or even treatment between retrieval and FET like what I'm going through. They do things slower, and more calculated, rather than just doing fresh transfer after fresh transfer hoping that one works. I think these longer, well thought out and calculated protocols end up making a difference in how many times you have to cycle, and your chance of an actual take-home baby. Obviously I'm a little biased because I did pick CCRM, so you may want to take what I say and believe with a grain of salt because I do believe in them with all of my heart.

I think it's so important to have that meeting with your current RE though, maybe you will feel differently after that meeting. It still seems like they are a very good clinic as well, and maybe it is worth it to give them a try.

You continue to be in my thoughts and prayers, this is such a major decision, and no one but you and A can really make it. Sending strength to you guys! You can email me anytime if you want to chat about it, or have any questions about CCRM.

Thinking about you guys!

Catherine said...

I'm praying that our Lord gives you answers and peace of mind in finding them. It sounds like you are doing all the right things.

Lindsey Gage said...

Oh my the decisions we are faced with on this road! They are only made more complex by the ridiculous amounts of money involved. I'm so glad you have an ally in your nurse coordinator. I'm so appreciative of all the work our donor nurse does for us and know this process would be so much more difficult without her. Side note, tomorrow is nurses day. :)

Cristy said...

Ok, I'm in love with SC. Seriously, anyone who not only gets back to you but is also willing to sit in on a consult with the RE is amazing!

Honestly, I'm also very skeptical about stats from IVF clinics. Granted some clinic are better than others, but if it seems too good to be true, it probably is.

So, I have a thought: have you considered contacting a 3rd party to give you their evaluation? The one I'm thinking is Fertility Authority (http://www.fertilityauthority.com/). They don't have ties with the clinics and may be able to give you some insight to your decision.

All that said, I think you should trust your gut. For me, as much as I loved my first clinic, I really believed they were missing something (mainly their resistance to using PIO). The second opinion we felt the protocol made the most sense and we felt comfortable moving forward. It was pure gut. So go with what makes the most sense to you, even if it doesn't rationally make sense.

In the meantime, I'm sending lots of love. None of this is easy, but this part of the process is really not fun.

Team Harries said...

You seem so organized with all the costs and facts! So glad you like your nurse, she sounds great! Hope your hubs is home soon so you can move forward with making some decisions!

Anonymous said...

I don't have any specific CCRM information for you, but I wanted you to know my heart goes out to you.

I also know several friends that swore up and down that they would only do one IVF cycle and be done. But after that BFN, they just couldn't say, "Okay, so now I'm fine with no kids?!" Because, who could really say that after this journey so easily? Anyways, just some friendly thoughts.

Melanie Schultz said...

I read your post and wanted to give my two cents....

Don't make money an option when it comes to IVF. Always remember you cannot put a price on a child. We were in the same boat. Financially, we could only do IVF once. With that being said, we did go somewhere that was more expensive than others but it was the best decision we made. Yes, we paid more but we had a better chance of it working.

Secondly, ask CCRM if they do a package where you only pay if it works.

Third, just like your nurse said, follow your gut. How would you feel if you stayed local and it didn't work? It sounds like you know the right decision you just need someone to tell you :)

Thinking of you and sending hugs!

Caravan Sonnet said...

Oh sweet lady... as I said in the last post I am just praying that you have tons of.peace about yoir decision and I am so so sorry that you are dealing with this. :(
Rebecca
p.s. ~ It is RIDICULOUS that insurance doesn't cover this!! I am struggling with that too that the insurance isn't covering some of my health issues!!

Aubrey said...

I totally, totally understand you having all of these questions - I did too! As you know, I'm only in the beginning stages of cycling with CCRM. In fact, after my consult, I ended up doing two more IVF's and one FET at my local clinic before finally going out and doing the ODWU. I waited seven months! Finally, I knew I had to bite the bullet!

So, with that, here's my two cents: If you're struggling with what to do next, maybe you should go ahead and schedule the ODWU. Pay the $4,500 ish and see what they say. I had my ODWU in April, just sent my day 3 blood to them and now have my re-group with my doctor this week. This will be the important week, when I find out exactly what protocol my doctor suggests for me... I'm definitely all in and will be cycling with them, but it's not a done deal at this point. I could back out. They haven't given me a calendar yet... So, you could do the ODWU, have a consult with your doctor and see what he recommends... And then make your decision? I know this only delays things - but it might be what can help the most. I feel like the ODWU tells the doctor A LOT about your case. Anyway, as always, e-mail me with any questions :)

xoxo

Anonymous said...

My husband and I are in a similar spot to you right now. We have had three IVF cycles and had a phone consult with CCRM last week and it was both informative and overwhelming. Ultimately, we have decided to go to Denver for a ODWU in two weeks, but I still find myself worrying about the cost and whether the statistics are truly legit. It is such a tough decision, but I knew if I did not go to CCRM, I would regret it. The additional testing offers me comfort-- if there is something wrong, it is better to know from the get-go. As cliche as this sounds, I would advise you to go with your gut. I will be checking your blog and rooting for you in the meantime! Good luck. :)

Dream Chase said...

I haven't researched CCRM, but I know a few people that have and a few that have had cycles done with them and they do take tough cases. There is another blogger I follow who is a tough case who talked to CCRM and they were honest and told her that her particular case didn't have a very high success rate, they laid it out for her. Ultimately she's going with her local clinic since they agreed to talk to change a few things CCRM was gonna do. If you are on BBC, find user calcotje, she had her FET with CCRM and has done a lot of research and if you PM her she will give you info. She's moderator (along with me and another girl) of the DOR group on BBC, http://community.babycenter.com/groups/a6742399/ttc_with_diminished_ovarian_reserve-amhdor, so feel free to PM her with your questions and concerns and she will be very honest with you.

Megan Brink said...

You are one of my favorite ladies on this blogsphere and on IG. You know my heart goes out to you daily, as well as my prayers especially with this infertility situation.

You *have* to do what you feel is best for you. If CCRM is doable, then do it! I feel like your heart is leaning towards it. I absolutely don't want you to have any regrets looking back one day. I feel so lucky to feel (for the most part) that our clinic is right for us at the moment. But the second I don't feel that way we will be switching.

Keeping you in my prayers, today and always.

M

abrinkadventure.blogspot.com

jAllen said...

I tried to see your TTC timeline, but couldn't go to the link. If I recall, your previous IVF was cancelled as your ovaries were over-supressed from the lupron. Did you ever get to a point of doing a retireval or transfer? If it were only the case of needing to find the right stimulation protocol, than it might be worth staying with your clinic (espcially if you have some insight from what CCRM would recommend). Unfortunately so much of it is trial and error to find the right stim forumla. I find it hard to look at the overall success rates of a clinic to predict your individual chances, since there are so many variables and unfortunately case selection is one of those factors. If someone had multiple failed transfers without an obvious cause, then yes it would probably be helpful to go to a different clinic and get a fresh prespective. OMHO

Leigh Ann Ordan said...

I have watched my best friend go through this... go with your gut!

Laura Rahel said...

If you stay with your local clinic and a live birth does not result, I think you'll regret not going to CCRM.

If you try CCRM and a live birth does not result, I think you may regret the money spent, but I dont think youll regret not doing your local clinic (after all, they couldn't have offered better chances than CCRM.)

If I only truly had only one last go at it, I would choose CCRM.

The cost may be hard to justify to A. But hopefully he will come around do understanding that if you only have one more shot at this, you want it to be your BEST shot.

Lots of love pretty lady!

Sarah said...

Hey Jessah, I have no advice but I had to say huge hugs and I totally feel you. I'm going through a similar thought process. It's so confusing. I've decided to stay at my clinic for one more round but after that- we are moving on and I have no idea what we will move on to. I think you will make a great decision. :)

Impatiently Waiting said...

Oh gosh! I wish I had the answer. I know that when we asked RE who he would recommend for a second opinion; he said CCRM. I love my clinic, the nurse coordinator is awesome. However, I wonder if we need to see a third doctor before jumping to IVF. So, I understand what you mean when you want to make sure you get the best odds! Follow your gut.

Em said...

Thank you for typing up this post. Selfishly, I am so curious to hear what people have to say because unless an IUI works really soon, we might be heading to CCRM as well.

I am sending a link to your post and your email address to a friend of mine who did a few unsuccessful cycles at my clinic and ended up at CCRM. She's super knowledgeable about CCRM and a big fan. She worked with Dr. Surrey. Let me know if you don't hear from her and I'll piece together some of the info she's given me over the past months.

Good luck to you! Praying for peace and clarity, Jessah!

Anonymous said...

I have had 2 miscarriages in the past 4 months from 2 failed local IVF cycles-- most recently a D&C at 9 weeks. My husband and I are devastated and looking for a second opinion.

After doing much research, we too have scheduled a phone consult with CCRM for the end of May. I am 39 and am sure advanced maternal age is playing a role. With this in mind, I scoured the internet and CCRM kept coming up for DOR (I don't make many eggs) and AMA. I too went over the SART data as we would be traveling from Massachusetts and paying out of pocket (versus having everything covered) if we decided to go out of state. Interpreting the SART data wasn't easy but this link was very very helpful in trying to understand the numbers: http://fertilitysuccessrates.com/blog/understanding-sart-and-cdc-ivf-success-rate-data.html

With regards to the 2011 SART data, in my situation, for my age group (38-40), my local clinic has 566 cycles with 21.4% percentage of transfers resulting in live birtha vs. 85 cycles and 36.6% live births for CCRM. That doesn't seem like a huge difference and the small number of cycles at CCRM made me question "cherry picking" as well. I think my local clinic has very high cycle numbers across the board bc Massachusetts is one of the few states where infertility treatments are covered by insurance, i.e. all MA IVF centers will have higher cycle numbers compared to states without coverage. BUT the other numbers that I were interested in were the %retrievals resulting in live births (19.5% at local clinic vs 35.7% CCRM) and % Donor fresh/thawed embryos resulting in live births (49.3%/24.8% local clinic vs. 76.3%/61.1% CCRM). These numbers suggest that the CCRM lab itself is superior to my local lab with regards to technique/handling of embryos.

With regards to "cherry picking", which is a concern for me seeing a cycle number of 85 for CCRM versus 566 at local clinic (huge difference), the more I read people's blogs, signatures on forums and touch base personally with others in similar situations, I don't believe CCRM is selecting "easy cases". In fact,it seems most people chose to go to CCRM as a "last resort" or after they have failed else where.

I have a follow up with my local RE next week and a phone consult with CCRM at the end of the month. Then we too will be in a position of deciding where to do our next cycle...definitely not fun but I think you need to trust yourself and your instincts.

Wishing you tons of luck!

Anonymous said...

My decision was easier as I am in Colorado but I can say I was not an easy case. I have diminised ovarian reserve - diagnosed at 33- my husband had morphology issues and I produced few eggs. I now have beautiful twins and truly believe that is becuase of the doctors at CCRM. I did not have success on my first try and agree with the first comment. I thought I would never do more than 1 cycle but it is hard to stop when there is still a chance. Good luck to you!

Starving For A Solution said...

Oh Jessica, my heart goes out to you and A for what you are going through now and what you have been through for the past few years. Keep praying for the right answer. The correct path will come to you and the doors will be open. It sounds like you and A need to sit down with a bottle of wine and discuss what is on your hearts. Together, you will come to the right decision for you and your family. Sending you love and prayers.

Sarah at Midwest Pillowtalk said...

le sigh. insurance is so damn frustrating. and just blah. i remember how mad i was when our clinic brought BCP into it too. wah wah.
hang in there girlfriend. youre doing great.
xo

Rebecca said...

I agree with Laura Rahel. To borrow a phrase from Mo at Life and Love in the Petri Dish, so much of this process is about "regret management".

I do believe CCRM has higher success rates than most places, and I think it has to do with them looking at some things that most other clinics don't seem to look at. They look at AMH level as a predictor of ovarian reserve/response, the ODWU looks at (among other things) uterine blood flow (they advise against caffeine - none of the other clinics I've been to have mentioned it) and involves a hysteroscopy, they do the beta integrin testing, and they have more advanced chromosomal testing (if you opt for it) than most other places do. (Although other clinics are catching up on the chromosomal testing.)

They definitely don't cherry pick for easy cases from what I've seen. I had had 5 miscarriages (3 from natural pregnancies, 2 from FETs) by the time I arrived there, 5 years into our journey. My first FET there, we opted to transfer only 1 embryo, which resulted in positive betas but behaved like an ectopic. (It never could be seen on ultrasound, so we can't say for sure.) Dr. Sch would have preferred we use a gestational carrier even before that FET, but he let me do it, and let me do it as an eSET. Then when I said I wanted to do one last attempt with my uterus, he said that even though his recommendation would definitely be a GC, he understood why I needed to try one last time. We transferred two, and thankfully our daughter was born after a relatively uneventful pregnancy. I can't say that CCRM gets all of the credit, because that was also the only transfer where we also worked with the Alan Beer Center for some immune system issues I have that we treated with LIT (went to Nogales, Mexico) and IVIg, neither of which CCRM recommends. (We did let them know in advance that we were planning to do those things.)

Mo (I mentioned her blog above) was also had her daughter via a CCRM transfer after her 7th pregnancy, which also included IVIg. And I have an IRL friend who had struggled for several years (including previous IVFs) with BFNs and 1st tri losses, and she had twin boys via CCRM (no IVIg involved). (Can't remember for sure if it was her 1st or 2nd transfer there, but I'm thinking it was her 1st.)

To be fair, I know there are women who go to CCRM and despite the best efforts of all involved, they don't wind up with the baby they were hoping for via that route. So I totally get that it's not an easy choice to make. And I hate that insurance doesn't cover it in most cases.

Whichever clinic you decide on, I wish you success.

Endo_Life said...

The stress of IVF is hard enoughwithout all these extra decisins that need to be made. I hope you and A make the best and right decison for you. Thinking of you xx

Mrs B. said...

Wow, what a tough decision. I must admit you can't ignore those odds at CCRM.
It really is unbelievable in America insurance won't cover IVF. Luckily in Australia we get approx half back from the government and can claim or ER hospital costs from our health insurance. I do feel so lucky to live here sometimes.
If I was in your position I would go with CCRM. Like you said, you guys want to give it one more shot, so make it the best shot you can get.
Good luck!

Anonymous said...

Go with CCRM, if only because you are having one shot and you have to invest all. You will regret the decision if you go with your local clinic and it isn't successful as you will always wonder what if. I think it's great you are doing this research now, instead of after a failed cycle- you are doing all the right things. I know the financial difference is huge but there is a reason they are more expensive. Best of luck with the decision, trust your gut. P.s is the reason for one cycle only purely financial or is it a combo of factors? X Amy

Anonymous said...

I am also local in Colorado. I worked with another RE here, and said after 3 IUI's, we're moving on to CCRM. I personally know multiple people who have had success there. They all have said (and CCRM will say) it is mainly due to their outstanding lab, as well as their experienced docs. I was very hesitant about the cost factor too, but told myself "If it's going to happen anywhere, it will be here." I am VERY conservative with money, and I usually make decisions where I get what I pay for (I'm usually cheap). In this case, I decided you truly DO get what you pay for, mostly in the positive way. I've decided that if it doesn't work at CCRM, I can say I have it my absolute best shot. Of course you have to be able to afford it without going into debt you won't be able to come out of. If you can, I say go for it. Maybe you could start a donation page on here? Not sure if that's something you'd be comfortable with, but I'd be one of the first to donate! :-). Good luck to you. -Jen

Sadie said...

I HATE IT that any of us even have to contemplate these choices, and then feel like we are the ones in some way responsible when things don't go according to plan...when so many people just have it happen. I'm sorry you're dealing with all this Jessah. And I'm furious that your insurence considers breast enlargement as legit as your future family. Ridiculously unfair!!! Sending you strength and hoping you soon find the way forward that is right for you.

Non Sequitur Chica said...

I have not looked into CCRM myself, but have a friend that is going there now and two people from my RESOLVE group here in IL. Like a previous commenter said, the two people from RESOLVE are using CCRM as a last resort when the IL clinics couldn't get the live birth for them. They are NOT easy cases with 2nd tri loss, immune issues, etc. Not to mention my friend has PCOS, advanced maternal age, genetic issues, etc.

If you are only going to go through IVF once then I think you will regret staying in CA. Why not go to the best in the nation for your care?

Anonymous said...

Hello! I've been following your blog and I love how insightful and positive you are. I was diagnosed last year with DOR and told go straight to IVF. I have a very close friend who is an RE fellow at Mayo who was very candid and open when trying to figure out what to do. He did tell me that CCRM does cherry pick and technically the 'best' clinic is in NJ, but their stats aren't the best because they don't have exclusion criteria for age and BMI. Also, what is your reason behind 'one and done'? My friend told me that 95% of women will be pregnant after 6 cycles (fresh & FET). To me, I would do 6 cycles in a heartbeat if that meant bringing home a baby. IVF is not this bad and scary thing I once feared. Yes, the emotional aspect of failure is the hardest part. The rest was relatively easy. The cost? Yes, expensive, but the cost of raising one child in a middle income household is $500,000 by age 18, so the cost of IVF is another expense towards a child, which is expensive in the long run. That being said, your best odds regardless of where you go are to not cut yourself short and limit yourself to one cycle.

Best of luck to you, you are an amazing and inspiring woman!

alesha said...

What a difficult decision. You're in my thoughts and prayers.
I'm also pissed off that insurance doesn't cover IVF. That is 100% ridiculous.

Ann said...

Hi Jessah,

I've been following you for awhile-just a silent reader that is going through the very same thing as you. I'll be going through my first IVF cycle this month after a few failed IUI's. Since I live in San Diego, we are going to UCSD Reproductive Partners (actually, I have Kaiser and they partner with UCSD and stats that they publish are actually shared).

Everything for us is out of pocket as well so we feel your pain and frustation regarding insurance coverage. Having Kaiser helps with some of the medicine coverage but not all, especially not the expensive ones that are not generic. Anyway, I finally needed to write you because I can just feel your emotions right through the page as I read. The struggle that you are experiencing regarding these decisions are so intense that my heart tugs as I read this. One, because I'm about to start the very same journey as you did and all the unknowns are haunting me, and two because I only want to do this once. But some of your readers are right.
The heart and mind sometimes doesn't jive with eachother. You think you only have it in you to do this once, but after all is said and done, you might just have the muster someway somehow to try again if it doesn't work. We just never ever know what the future holds and how we feel at one point or another. So, your nurse is right about one thing.....just listen to your gut. Listen what is right for you right now at this time. Not what stats show because you can slice that up a million ways and go crazy. I know I have. I didn't choose USCD, it was by default because of the Kaiser partnership. But I'm certainly relieved that their numbers are pretty good. I'm just relieved, but not reassured because you see, nothing is guaranteed in this whole process. Nothing, no matter where you go. I'm still scared, still frightened that I'll be the percentage that fails. Nothing is for sure unless God says its time.

Once after my last failed IUI, when I just couln't take it anymore and told my RE that I wanted to proceed with IVF, my RE looked into my eyes that were full of tears and frustration, and asked me " Do you know what the secret to a successful IVF is?...It's the lab, its the embyrologist." So, she said that is why they decided to partner with UCSD for their IVF cases.

That stuck with me.......and I wanted to share that with you as you do your research.

Desperation to be a mom knows no end for me right now, and like you I've done the research on CCRM just in case I need a last resort, because I do feel that they are best as well. But it cannot be easy for you to read comments regarding where you should go that would leave you conflicted as ever. That's why I would also say to go with your gut today because your gut may guide you some other way in the future based on circumstances. I wish you all the best and will continue to follow you on your journey, rooting for you and waiting for the day when you post about your baby(ies).

waiting and wishing said...

I have to agree with the majority- go with CCRM. When we were choosing a clinic in the beginning of all of this, it was my second choice- only to Oregon Reproductive Medicine because it is local and has great success rates. I do believe the stats on the SART website are accurate and can tell a story about the clinic, but most importantly about the clinic's LAB and embryologists. I think no matter what, but CERTAINLY if I was only going to try once, I would without a doubt choose one of the top rated clinics, otherwise I think the 'what if' would eat at me forever if we were not successful.
Wishing you all the best as you make some big decisions!!

Whitney B. said...

I know nothing about CCRM, but reading your posts and these comments made me want to say this....
If you had cancer you would try and find the BEST hospital to treat your cancer right? Cancer treatment centers of America comes to mind...
I feel the same about your IVF situation. If you have the ability to go, the means, the time, then give it your best shot.

JenS said...

I haven't done a ton of research on CCRM, but I always assumed the higher success rate was because of their lab and embryologists and all that. It's a really tough decision. Personally, if it was my only or last shot, I would go with CCRM. I agree with previous commenters and I don't think they cherry pick to get better numbers. It seems to me that the toughest cases are the ones who end up there. Good luck and I hope you can come to a decision you are both comfortable with.

Emily said...

I swear, you think that just choosing to do IVF is a tough decision. Then, you realize that ALL of the decisions that follow just wanting to do IVF are ten times harder to make!

I know you've gotten a TON of positive feedback encouraging you to go with CCRM, and I'm sure they are great. However, I am kind of like you thinking that sometimes if it's just too perfect it's almost hard to believe. I do believe there are some techniques they use to skew numbers, and although I don't have the insiders perspective that an RE would have on how to do this, I do think that logically they do this. Some clinics do turn down women with certain ages and diagnoses, but I can't speak for CCRM. I do think one commenter pointed out something very important in that they have so few cases per year though. I mean it's expensive, but not so ungodly expensive that it will keep all of the infertile people of America away.

I hope that a few more days of thinking, talking, and sleeping on it and you will be at peace with your decision. I know it's so hard when you are paying OOP. We spent between 17-18K on our recent IVF cycle. We've decided to do two more FET's (only transferring one embryo each time most likely) with our current RE, and if we aren't successful I may be strongly considering getting more in-depth autoimmune testing with Dr.Beer's clinic in Los Gatos, CA and trying again with an immune based protocol if they feel it will benefit us.

Darcy Kristy said...

I don't have any advice as far as CCRM goes. But, I agree with a many of the previous comments. If you and A are dead set on one IVF, I would go with your best odds. I, too, feel like you will regret it more if you don't ever try CCRM. But, I would only feel 100% okay with the decision to pay the exgta $ and such is A was 100% in agreement with you. You're stuck making a huge decision, and I feel for you. As others have said, go with your gut.....

But.... another thing to think about... you say you guys are dead set on one IVF, which we are too. But, for us that meant also using any extra embryo's for FET as well. Just one fresh IVF cycle. So, is that the same for you? If you need to use FET and have the embies to do so, would you? Because that's something else to think about. Would you be able to afford/ go forward with FET's at CCRM? At your local clinic? Just something else to consider, I guess

Theresa said...

I don't have any helpful advice as to which clinic to go with, other than to echo what your nurse says and say go with your gut. I just wanted to say I'm thinking of you both as you try to reach your decision. It took us forever to even dive into IVF so I can't imagine how you must be feeling about this decision. HUGS.

Sarah said...

Sigh. I wish this was so much easier for you! All those thoughts and numbers flying around in your head has got to be hard :( I just pray everything becomes clear soon! I didn't do BCP for my IVF cycle and I did not do a long lupron protocol for it either. It's funny, because actually my doc recommended a long lupron protocol as that is what he usually does. But something in my gut and heart didn't like that! Basically because I tend to have really long cycles. And when I'm doing IF treatments my ovaries were always slow to get things going. SO I felt I didnt need any other drug suppressing things and making things move slower. So I decided on a short lupron protocol, and thank God I did!! :)

Shelley said...

I've wondered a lot of the same questions that you ask. How can the numbers be so high and what is CCRM doing differently than other clinics, and why are my clinic's numbers so low in comparison?

My RE mentioned once that some clinics (I have no idea which ones she was referring to) can effectively pad their numbers by choosing to do a freeze all cycle if a cycle is not going well. This way, the patient will not be included in their fresh cycle statistics.

Regardless, there's a reason they have great numbers. Perhaps another way to look at it would be to see if you could find a clinic in California (including your current one) that could provide the same probability of success to you given the specifics of your case.

It's such a difficult decision and I wish you luck as you wade through the information and your thoughts and feelings about the options.

Alicia said...

Listen to your gut. This is the best advice you gave yourself. All the best in your decision making.

Anonymous said...

You're in Cali.... Have you thought about any other clinics in neighboring states? I live in south eastern Cali. The closest clinic is in Reno, Nv. The dr there is AMAZING. He is world renowned. And their numbers are comparable to CCRM. My husband and I have tried for almost 8 years. Have had 2 known losses. Sat down with Dr F and he knew exactly what was wrong. We didn't want to jump straight to IVF so he allowed us to try a couple IUI's. Now we start IVF cycling in Sunday. There is two Drs and an amazing staff. I grew up in Northern NV and I know at least 10 people who have gone to my clinic before me and every single one has resulted in a live birth. Now I've known a few from the small town I live in currently who made the 4 hour drive. All, again, resulting in live births. I am so glad I went with The NV Center for Reproductive Medicine for my IVF rather than CCRM (which I had been considering). Again their numbers compare, but way less money. And the compassion and care is beyond words.
Hope this didn't sound too all over the place. But I think it's worth a look. Don't think you have to stay within CA or jump to plans tickets and CO.

Mel said...
This comment has been removed by the author.
Samantha N said...

I'm so sorry you've got hard decisions at the moment. I am deciding on IVF at the moment and that's hard enough in itself.

I hope that whatever you chose you have no regrets and you feel happy with your decision. and I hope your hubby gets home safe.

daysofserenity said...

I did a lot of research before attempting IVF and what it came down to us was did we want to spend money at a local clinic with less success rates and then pay to go to CCRM or did we just want to start with the best? We decided that even though it is more money, over the long term it is less.

They have a shared risk program too that (is more expensive then paying a la carte for one cycle) if you don't bring a live baby home within 6 cycles all the money is refunded. DEFINATELY something to look into!

Also in my research CCRM is the best in the nation. They pretty much wrote the book on infertility. Their lab practices are what other labs look to for standards. Their research center is what other REs and Drs look to in order to build their protocols. When I realized that, for me, choosing CCRM was like going to the source.

I don't know where you live, but CCRM has a sister clinic in TX. The TX clinic has almost as good rates as CCRM, they are a VERY, very close second.

The SART data is real! If you choose to do a ODWU with CCRM they will not only go over the SART data, but they keep track of things SART doesn't and explains how you can discern the difference between clinics data. You can research and learn all this yourself, but it takes time. I did it. And was pleased when they went over it again at our ODWU because they want you to make educated decisions. Not to mention since I educated myself on how to read the SART data I understood what they were saying.

I am sitting here nursing my twins that were the result of my first IVF cycle with CCRM. (We did plenty of IUI's and monitored cycles with my OB prior) I can't say enough good about them. I did my research prior and knew this was the only clinic we would spend our money at. For us it paid off. Our dr was Dr. G. He was awesome! And our nurse was amazing too! Great bedside manner and they really care about you! The front desk receptionist knew my first and LAST name by site! This was amazing to me. I can't say enough about our choice. If you only have one shot at IVF then, in my opinion, its a no brainer - choose the best - CCRM

Kim @ Infertile Myrtle said...

Love your "PS"... I'm indeed a fellow infertile. Found your blog via your comment left on Our Griswold, whom I also follow. I'm prepping for IVF #2 to start next Friday.

My heart breaks for anyone not covered by insurance for infertility - this definitely needs to be changed!

Just popping in to say you've now got one more cheerleader praying for you!

Amber said...

The lack of insurance coverage is indeed unfair, to say the least. If you were willing to do a 2nd IVF if your local clinic did not get you your bfp, I'd say go that route. However, if you are sticking with just the one shot, whatever you decide, do not have any regrets. That's my only advice, and I'm sure it doesn't really help. Just be settled in your decision so you can look back, and regardless of the outcome, be okay with it. If it's a negative, it will really suck for sure, but you have to be able to live with the result without feeling those regrets. I'll be praying for you Jessah, and wishing you the best of luck.

conceptionally challenged said...

Wow. I have to admit that I have only looked at local clinics (and from your driving-distance coloring, we are in the same area) - but those stats are incredible. On the other hand, considering the price tag, you might be able to do two local IVFs for the price of one at CCRM... and then the stats might not look so different anymore.
Good luck making your decision, it's a tough one - and of course good luck with your cycle, wherever it ends up being!!

Anonymous said...

I did a cycle at CCRM. They were awful, scumbags charlatans, snake oil salesmen!! I got OHS, they put me at a very high risk of a stroke, my husband was terrified that they would kill me. They did get 25 eggs but at the expense of my health and their fertilization rate was not any better than my previous doctor and the eggs were poor quality because they over stimulated. The cycle was a big fail and I had to get a lawyer for them to even pick up the phone and call me to explain the genetic testing results that I paid and extra $7000 for. ABOUT THEIR STATS. They push genetic screening on their difficult patients, which means that they go through "elective" freeze all cycle and these stats do not have to get reported in the patients age group. If you look at total # of patients and the # of transfers per age group you will see that the #'s don't match. CCRM's actual success rates are no better than anywhere else if you take into account ALL of their patients, not just the ones they choose to report. Their genetic testing is done at RMANJ, which is awful too but at least they cost less. Save your money, work with a doctor who is compassionate and is not to only looking to suck you of every last penny but actually wants to help you end up with a child.

robert yarn said...

Many times on a first cycle, the docs do a typical med course and see how it works. For #2, they change things based on the results. I imagine ccrm has a lot of multiple IVF patients and they also do more testing...which would allow more tailored protocols.
Denver Colorado Fertility Clinic

lily said...

Nice Blog.

Blogging tips