The importance of a 2nd opinion

After it is all said and done, we will have ended up with 3.5 consults as 2nd opinions (CCRM counts as 1/2 of a consult;)). I cannot emphasize enough the importance of getting a 2nd opinion for failed IVF cycles! I don't know what the outcome will be for us in the future but it is so important that no stone is left unturned.

Our 1st cycle was local and had dreadful results. No blasts or even morulas resulted in that cycle. At the WTF meeting, our RE gave us a blank stare when we asked what went wrong.

So we switched to the Chicago clinic. That clinic is really great. Granted I have had problems with their billing department but their nurses are consistently on the ball and our RE is one of - if not, the best in the Midwest. However, we would probably not go back there even if our insurance would cover that clinic. We were gravely disappointed with our WTF meeting. The suggestion that we just reshuffle the deck and hope for better eggs is really not something that we have the luxury or emotional capacity to waste money on. It seems almost careless to suggest that. He could have easily thrown us a bone during our 5 minute conversation (that costed us $120 I might add) that involved a protocol tweak or he could have suggested that next time we do all the monitoring in his clinic to pinpoint the most effective trigger date. After we requested our records we learned that during our successful cycle in 2013, we did not have 8 mature out of 13 retrieved as originally communicated. Actually, all 13 of our eggs in that cycle were mature (same as this past cycle). Only 8 fertilized normally. Does this make a difference? Apparently to the RMA doc, it does. My E2 was 4800 on trigger day as well and I only produced 13 eggs. We only had 2 poorly graded blasts result from that batch - of COURSE, one of those blasts was Kellen so the cycle was not a failure. But as the doc at SIRM said, "we got lucky".

So there were things wrong with our successful cycle too that we really should have looked at before trying this past fall. Had we requested our records and talked to other docs before proceeding, maybe we would have had a different outcome...but maybe not. My point is that you are your best advocate. Success with IVF is highly dependent on 2 things - the right protocol and a high quality lab. If your doctor is not interested in your case enough to apply a tailored protocol to your individual situation, that is an obvious red-flag. Lab quality is harder to gauge. The people that patients talk to when choosing a clinic are the RE, nurses, and admin staff. We never have consults with the embryologists. We don't know what their lab protocols are and we have no idea what exactly it is that they do. So we must rely on the clinic's word and age-specific success rates from SART. In my case, my successes and failures have been no surprise based on these rates. My local clinic is below the national average for all age groups. The Chicago clinic is very high for those under 35. There is a large drop in success for women older than 35. With that said, there is an unfair disadvantage given to those clinics who have excellent labs but attract and accept difficult cases, many of whom go on to have low success rates. So lab quality can't be based entirely on the success rates. It's all basically a crap-shoot. A gamble. A gut-feeling. All you really can do is ask God if you are making the right choice and if you are doing everything within your control because in the end, God is giving the first spark of life in that incubator - not an embryologist or gifted RE or your beautiful eggs. God is the reason why some beautiful embryos fail to form babies and why some ugly embryos do. He is the reason behind all that is unexplained. We are still not doing this alone. However, when a possible answer has been found, that is something that should be explored and utilized for success. I've said it before, God gave us brains to use for a reason. It would be a waste of His creation to not use our knowledge.

I am babbling at this point, but my point has been made. Get a 2nd opinion!!

More insurance changes and final 2nd opinion

The start of the new year brought more insurance changes.  Unannounced changes of course...these companies like to keep it's subscribers on their toes I suppose.  The changes are in addition to the "Center of Excellence" mandate that was imposed 3 weeks before the end of 2015.  So really everything with my insurance is different now.  Frustrating since I was finally feeling like I had it all figured out.  Now I have to spend hours on the phone trying to think of every possible question to ask regarding what's covered and what is not.  You'd think that the clinics would be your advocate in the matter but they get things wrong too sometimes.

Anyway, I found out that my benefits had changed last Wednesday after speaking with a financial coordinator who said that I had a LIFETIME max of 5k.  When I heard that I thought "Ooooh CRAP!"  A lifetime max of $5k would be like what we had last year with our max of $5k - but it would not roll over in 2017.  That would be it for us.  Granted, it is certainly something, but we are talking about procedures that can cost upwards of $15k not including $5k for meds.  So anyway, this was an example of a financial coordinator getting my benefits wrong.  I hastily signed on to my insurance account and found that my benefits had indeed changed.  But instead of expecting to find something dire, I discovered something pretty great.  The financial coordinator got something right - I now have a lifetime max.  But what she got wrong was huge - now I have a lifetime max of $25k for diagnostic and treatment services AND a lifetime max of $10k for meds.  This is incredible to me!  I was not convinced though - so I called my insurance company to speak with a real human.  It was true.  I also asked about my expenditures that have been spent so far in my lifetime - I was worried that since the word "lifetime" was being used, that would include ALL of my previous IVF procedures since 2012.  "No, you are at a balance of $0 for both services and meds as of this date", the insurance rep assured me.  "Oh sweet Lord!"  - I literally said that out loud to the guy...lol.  So, yea, pretty great news after dismal news a couple weeks ago regarding the clinic mandate.  After spending much of November and December wondering if we were doing the right thing to plan for another cycle, I am now taking this as a direct sign that we are supposed to keep trying.

There is a minor caveat to this high limit though - my copay for anything over my deductible has increased from 10% to 20%.  This does kinda suck - but the fact that my insurance will stick with us until we have spent $25k (or $5k out of pocket - 20%) really makes up for it.  Of course, this still will not be a cake walk though no matter what clinic we decide to go with.  There is always some amount of battling that I have to do with both the insurance company and the clinic's billing department - but eventually everything seems to get worked out.  Plus by having that high maximum, this means that all can be billed to insurance and I will get the network discounts too before I pay.  This is always a grey area regarding what exactly the discounts will be - and no one ever knows what they will be until procedures are actually billed - a fact that I find incredibly frustrating - how does no one know what to bill ahead of time???  That's like me (as a road engineer) saying, "Oh, I've designed this road, but I don't know how much it will cost until AFTER it is built".  What a load of BS!  But at least we have dollar figures that we won't go over from these clinics.

Regarding procedures that are covered, this seems to be the same as last year.  PGS is still not covered but cryopreservation, ICSI, basic IVF stuff, etc is.  Diagnostic tests (also includes monitoring visits and bloodwork) would now be counted towards my lifetime max though whereas before it counted towards basic medical services.  The monitoring part kind of sucks, but that is typically not the most expensive part of an IVF cycle.  Plus, from a diagnosis standpoint, we already know that we have issues - we really only need to get inexpensive day 3 tests and periodic semen analyses done now.  Unless of course we go to CCRM where they start at square 1 and retest everything.

I'm sure this talk of insurance is incredibly riveting so I'll switch gears now.  Much of this is so I can keep it straight for myself though;)

Now that I have that bit of news out of the way, on to developments with our "clinic shopping".  I had a phone consult with RMANJ (in New Jersey) on 12/30.  There were a lot of similar thoughts that were discussed as our other 2nd opinions from CCRM, SIRM, and Fertility Specialists - recommendations to stimulate harder, utilizing a freeze all cycle, use PGS (CCS -Comprehensive Chromosome Screening- in RMA and CCRM's case), claims that their lab would be better for my eggs.  Obviously, there was discussion of egg quality and semen quality.  For semen quality - get DNA fragmentation test done, take antioxidants, quit smoking (of course this last one won't happen:/), and possibly get sperm directly from the source before it spends 3 months in "queue".

Regarding egg quality though, I heard something new.  This doctor was of the opinion that my egg numbers were not in line with my E2 numbers - I should have had more eggs retrieved.  Since all my eggs were mature, he was thinking that I was triggered too late and my eggs were overly mature.  There is no test to determine if an egg is overly mature - but usually they will have dark centers, will be cloudy, misshapen, or grainy.  8 of my 13 eggs exhibited these characteristics - these formed embryos that either arrested between day 1 and 3 or they had high fragmentation on day 3.  None of these made it to day 5.  In every egg retrieval this doctor does, he expects a certain percentage of eggs to be immature.  In his experience, the longer they "cook", the worse the quality is.  So given my high E2 and the fact that I had 0 immature eggs, he thinks my eggs were overly mature and giving off higher levels of E2.  I mentioned that my follicle sizes were not very big on my trigger day - but he said that clinics can end up with inaccurate true follicle size if they measure follicle size in only 2 dimensions and/or take the length and width measurements in order to get the average size.  My local clinic does both of these things when monitoring follicle size.  True follicle size is more indicative of the highest length/width/depth measurement from a 3d perspective.  This was something that had crossed my mind back in 2013 with monitoring at my local clinic - they are not as advanced.  But since the Chicago clinic wasn't that concerned with it, neither was I and we ended up with a BFP.  But I guess it can be an issue though.  Now that we are considering other clinics, we are finding that they all require more monitoring done in their offices due to this very problem.  So on the next try, this won't be an issue.  All of the clinics we are considering will allow me to start monitoring in Indy but they will want me at their clinic for monitoring at around day 6-7 until my ER procedure.

This doctor also indicated that the fact that I had a cyst, and a large one at that, did in fact impact my cycle.  He said that cysts are common when birth control is used prior to a cycle start and he doesn't use birth control for this reason.  The bad thing about this though is that this makes it hard on us to try to figure out when we will need to be in New Jersey ahead of time.

A lot was discussed with this doc but the last thing of particular interest that this doc mentioned was that according to the retrieval notes, a high amount of suction was used to suck the eggs from my ovaries.  He said that his lab is much gentler with eggs and they use a much lower suction.  Eggs from older women are especially fragile.

This doctor spent literally the entire hour discussing our case.  I was really impressed with that.  He gave us a variety of success rates.  This clinic routinely uses CCS (basically PGS to screen out abnormal embryos) which cuts down on miscarriages and birth defects.  The cycles that transfer a normal embryo have a greater success rate.  So for my case he gave the following:

Without CCS:

• 1 embryo - 20%
• 2 embryos - 55% (40% twin rate)

With CCS:

• 1 embryo - 60%
• 2 embryos - 75% (55% twin rate)

Obviously, the goal is to do CCS.  However for us, our biggest obstacle will be to get enough blasts on day 5.  This is when they are biopsied and frozen - results come back in a couple weeks.  If there are normal embryos, the transfer is scheduled, I start meds, I do monitoring in Indy for my lining thickness, we fly out to NJ on a weekend, do the transfer, then come back.  This doc is hopeful though that with the right protocol dosing, careful monitoring and administration of the trigger, and gentler egg extraction, we have good chances at having more blasts for our next try.  The good thing about a freeze-all cycle is that if I do not have a good response or we do not have blasts, we can try again without paying for/dealing with going thru the transfer procedure.  We would just not do the transfer but rather do another stimulation cycle and hopefully get better results.  THEN do the transfer.  The fact that we have this $25k max now allows us to do this and we won't have to wait for the year to roll over.  One last tidbit from our conversation - they do quite a few out-of-town cycles.  About 30% of their IVF patients are from out of town.  So this is something that does not cause me unease like it would at the TX clinic.

I spoke with the financial coordinator yesterday.  Everything is very doable.  This place is more expensive than the TX clinic but much, much less than CCRM (strange since what I read on google says they're about the same).  I read somewhere that this clinic uses the same lab protocol and has the same thought process on their cycles - so really I am getting more for my money.  Their success rates speak for themselves as well.  So again, CCRM seems to be something that is just not reasonable.  Really the 2 things that make it that are the ridiculous fees for their "one day workup" and the astronomical fees for CCS.  Their fees are more than double those are RMA.  I suppose it depends on what insurance you have but for us (including assumed meds, testing, and procedures for a fresh cycle with PGS/CCS and an FET later) CCRM is more expensive in the order of double-digit thousands of dollars (mainly because of their mandatory one day workup and their lab & surgery center are "out of network" for me).

So I guess next steps are to discuss all this with hubby.  The nurse has already given me some blood orders for basic things, we need to talk to a genetic counselor, and hubby needs the DNA frag test done and sent to the doctor.  (we already have the shipping container for this test BTW - we've been holding off on doing it until we knew which doctor should receive the results.  It arrived and hubby could not stop laughing.  He was expecting a small insulated box or similar.  Instead we received a receptacle that looks like R2-D2 from Star Wars.  The thing is huge!  "Do I need to fill this whole thing up?!" he asks me.  LOL!)  I have some more questions regarding logistics for the nurse, but I'm thinking that this place is the place to go.  The drawback is we'd have to deal with New York.  However, flights are cheap to Laguardia and there are cheap suite-type hotels in the area where the clinic is located.  During down time we could just hang out in the hotel or even take some day-trips to NY.  I've never been there so that would be an experience for me.  We shall see...

More consults...

A lot has been developing during the last couple weeks. Our consult with SIRM was bumped up and we spoke with the doctor there via Skype. He gave us his thoughts that a large part of egg quality lies with the protocol. We really thought what he had to say was interesting. Plus, after speaking with the nurse and financial coordinator and considering that the doctor is renowned globally, it seemed like SIRM was the way to go. They do all their cycles in batches. The next 2 dates were 2/22 and 4/2. We were going to shoot for April. 

But alas, the day hubby and I were gonna sit down and discuss it, I got a letter from our insurance company saying that as of 12/31/15, we must choose a "center of excellence" in order for future cycles to be covered. I immediately called the insurance company and discovered that not only is SIRM not a center of excellence, but our current clinic is not either!  Granted, we were leaning toward switching clinics but still...talk about frustrating!!  I set up an appointment to talk to a nurse coordinator to discuss it in further detail last Tuesday. During that call, she did confirm that the only clinic we were considering that was a center of excellence was CCRM. I pled our case, but she said that the only way to be covered would be if we were going to start cycling before the end of the year - which at this point is impossible. So thankful that we do have coverage but so frustrated and dumbfounded as to why we were only given a couple weeks to be notified of this change. What if we had already put down a deposit (non refundable I might add)?  We lost money spent on consults with clinics we can't even cycle with, spent hours researching, and hours filling out endless paperwork, getting records sent, etc. Grrrrr!!!

So now we are starting back at square one. I have to choose only the clinics that are on the "list". This list is not able to be sent to me as well. I have to send possible clinics to my nurse coordinator and she will tell me if they are covered. She only works during normal business hours so research I do has to take that in to account. I did get 2 candidates to call after our discussion on Tuesday though. One clinic is in Dallas. The other is in New Jersey.  Both have excellent success rates. The clinic in New Jersey, RMA, is very similar to CCRM with their approach and lab quality. We scheduled consults with both. The Dallas clinic (Fertility Specialists of Texas) was last Friday. RMA will be on 12/30.  

So we had our consult with the doctor at the Dallas clinic on Friday. He gave us a ballpark figure of 50-55% chance of success. The cycle would be a freeze all cycle with a frozen transfer later. This is a common theme with all the 2nd opinions we have received. There are studies that show that uterine receptivity is much better on frozen cycles as opposed to fresh since the body is not trying to recover from all the stimulation medication. PGS would be done if we have more than 2 blasts that result from the cycle. Due to my response on my previous cycle, he would keep the same protocol but push harder with my stim dose starting at 450iu to maximize the number of eggs retrieved. That would give greater odds at having a couple good eggs in the mix. He spoke heavily about sperm quality and that the role is larger than is typically thought. He recommended that we speak to a male fertility specialist in Chicago (best in the country he claimed) to make sure we have all the bases covered before starting a cycle. He thought that there may be a possibility that hubby could do TESE (retrieving sperm directly from the testicle before they make the 3 month long trip down the vas deferens which is where they become damaged) to get better sperm for ICSI. But he could not speculate at the time on the best course of action and said the male fertility specialist would make that determination.  Relating to egg quality, he said there is not much that can be done to improve that. Our embies had high fragmentation on day 3 which is evidence of egg issues. But the poor progress from day 3 to day 5 is also indicative of a sperm issue. He said that my reserve looks good though and that by stimming at a high dose, I should be able to produce some good eggs. I don't have to do repeat testing. They will want a hysterscopy before the frozen cycle, but that's it. Right after our consult, the nurse called to follow up and introduce herself. Then the financial coordinator called. The costs are VERY reasonable. Almost uncomfortably so. Lol. It's ridiculous how much variability the costs are from clinic to clinic. Our Chicago clinic was pricey. SIRM was a lot less, CCRM is like the Rolls Royce of the bunch (literally would equal the cost of a new car), and our original Indianapolis clinic was the cheapest. When we were there, we didn't even come close to the 5k max our insurance company has.  We will go over at the Dallas clinic, but only slightly over. Anyway I was impressed with how responsive this clinic was. It's very rare to have ALL the information in a matter of a couple hours. Usually it has consisted of a talk with the doctor, an email from his nurse a couple days later, and then a discussion with the financial coordinator a couple days after that.  I'm just a little hesitant on doing out of town cycling there. I can't find much info with women going there from out of town.  Also slightly nervous about being pushed hard. My first cycle my E2 got very high and my eggs were bad as a result. Of course this could've been due to poor lab quality as well - it's difficult to tell. Since we switched both protocols and labs with our 2nd and successful cycle, we can't narrow down what it was. Of course I was no where near to a high E2 number this past cycle so I think that's why this doc thinks I have room to be pushed. As far as logistics, he said we could plan the cycle out so we could arrange for travel. This would involve me being on the pill. I'd have some monitoring done here and then would travel there to finish up stims and have ER.  Then I would go back home and wait for the frozen cycle the month after, involving another trip down there. So 2 trips total. 

So that's what's happening right now. Like I said, we have another consult on 12/30. I also want to call CCRM to see how much their testing would cost after insurance. In order to get their thoughts on protocol and prognosis, hubby and I would need to travel there for their "one day work up" which involves a whole day of testing for both of us and talks with nurses and financial coordinator. I don't know if this would be covered by insurance or not. If not, it would cost us over $4k plus the cost of travel. That's before we even do a cycle!  Also, the work up needs to coincide with my menstrual cycle. There is a range of days within my cycle when we can do the work up but planning a trip around that will be tricky. With all that said, since we want the best and don't want to do this again, CCRM would be the way to go. 

Decisions, decisions....

WTF meeting and 2nd opinions

I just realized that I hadn't posted in awhile. This past month has been such a blur with work, life, etc. We celebrated our sweet boys birthday on Halloween. I can't believe he's already 2!  These 2 years have flown by. Work has been keeping me busy too. It has been good to be distracted.

The week after our bfn I scheduled 2nd opinions with CCRM and SIRM. They are in Denver and Las Vegas. Pretty far away but both clinics do out of town IVF cycles and are good with crappy eggs. So far we have had 1 2nd opinion and had our wtf meeting with our current RE.  The 2nd opinion was with CCRM. Originally we were scheduled for mid December but they had a cancellation a couple weeks ago so they were able to push us up sooner. The consult was not very informative- just went over our cycles and talked about options we could do. The doctor wouldn't give us a protocol or any other info because you have to go there to do all the testing. Only then will they give you real thoughts and a plan for the future. Even though I did all the testing this past summer already, they want us to redo it all. This, in a word, is frustrating. First of all, we would have to travel there. They do not allow out of town testing - all needs to be done in their lab (which of course is not in my insurance network). I just looked at flights for December to Denver and they are not cheap. And what do we do with our son for that day?  Secondly, we would have to spend a couple grand just to get all the testing done again. Third, the financial impact for the IVF cycle is nearly double than our current clinic. All that said, they do have excellent results. This is just such a gamble!  I'm especially wavering because our current re told us that a) he didn't know what went wrong and b) we have about 35-40% chance of it working on our 2nd try. But do we fork over all this money and deal with the inconvenience to go to a clinic in Colorado only to have it fail??  On the flip side, if we stay in Chicago, spend less, deal with a clinic that we are familiar with, have it be more convenient, but it fails again - what then?  Will I always wonder "what if"?  Ugh. I just don't know. 

My re is pretty sure our embryo quality issue is due to bad eggs since the sperm's roll is only about 5% of the equation. BUT what if that 5% is where our issues stem from?  He didn't recommend any other testing for my hubby. The other doc suggested he get tested for sperm dna fragmentation. If that was high, take supplements. Since sperm turn over every 3 months, sperm quality could be better 3 months after changes are implemented. The other clinic also uses PICSI where they use a special dish to find the good sperm for use in IVF via ICSI as sometimes it is difficult via microscope alone. 

My hubby and I talked about it during our recent car trip for thanksgiving. Hubby thinks we are trying too hard if we go to Colorado. He feels like it's extreme and all the hoops to jump thru and money is a sign that we shouldn't go to that extent. I'm of a similar mindset but I can't get away from the "what if?" part. 

We still have one more consult at SIRM in about 2 weeks. Interested to hear what this doc has to say but I'm starting to feel pretty despondent about a 2nd cycle. We still will try again but I've all but stopped taking supplements, I'm eating terribly, have gained weight - just not great health wise. Hubby is the same. When we do try again I think it'll have to be March so we have 3 months to get back on track. In the meantime, we may get hubby's sperm tested for fragmentation and I might start doing weekly acupuncture. Looking back to this time 3 years ago I can't remember feeling this negative. I seem to recall feeling hopeful but I was also so so scared and desperate. Now that we have been successful once though, that desperation is not there anymore. We have a beautiful son who brings us SO much joy!  We are indeed parents now. So maybe God is telling us that we were only meant to have 1 child.  Who knows. That's just not what I'm feeling at the moment though. I really do feel like we should be parents to multiple children and strongly feel like our son should have a sibling. He'd be a great big brother!  Maybe it's just wishful thinking though. 

Official results

As expected, my beta was negative last Wednesday. I got the call when I was at work. The nurse left a message that she had results. I left work early and called her back. I knew I was going to probably cry so I didn't want to do that at work. I only left an hour early so it wasn't too noticeable. Anyway, I didn't cry really when I got the official word. But it was still sad to hear that the cycle was officially over and to hear that "doctor wants you to stop all meds tonight". My voice did get a bit shaky but I didn't break down. I got home and reported the news to hubby. He was upset but not overly so. I went and got our son from daycare early and that brightened our moods a great deal. 

My hubby surprised me though. When I mentioned that I wanted to go over the cycle with the doctor, he said he wanted to try again right away. However, our insurance operates on a yearly max for meds and procedures which we have already hit. So we have to wait for next year. He didn't realize that and was bummed about that. Also it makes me uncomfortable starting again when he doesn't have a job. But really, that doesn't matter so much because we put all the stuff on an interest free credit card that we have until May 2017 to pay off. If he still doesn't have a job by that time, something is greatly wrong. So I donno. We might go again sooner than I thought. 

I set up a follow up (WTF meeting) with our RE on November 24th. It seems so far away (nearly a month since our official BFN) but that's the earliest phone consult that he had open. I want to also call CCRM or SIRM or maybe some other places who rank high with women who have DOR (aka crappy eggs) for a 2nd opinion. There's a place in Texas that is interesting. Some in California. So maybe we will do that while we are waiting for the appointment with our clinic. But really, we will see what our current RE has to say. If he is pessimistic or doesn't have anything new to try, we might switch. However if he has an idea as to what happened and thinks we have a good chance again, maybe we'll stay there. We'll have to see. 

Not much hope now

Today I am 8dp5dt. I have my beta tomorrow morning. I have been taking pee tests since Sunday afternoon. Last one was an hour ago. They've all been negative. I was pretty upset about it yesterday. But I've accepted it today. Even though we had poor embryos on day 5, I still had hope that something would stick and give us a sibling for our son. Now it doesn't look like that will happen. 

So next steps will be to actually get my beta results. Should be late afternoon when I'll get the call. Hopefully I won't cry so I can make an appointment right away for a follow up meeting with our RE. Then we'll call a couple other places for 2nd opinions. Even if we stay at the same place in the end, we'll still probably get some advice or things to try for next time. I know already that I'll add acupuncture back in next time but there might be other things. 

But we'll have to wait for my hubby to get a new job and for my insurance to roll over in January before we start another cycle. In the meantime, more preparation.  More dwelling on whether or not we'll be able to grow our family. Whatever will be will be I guess. If a cycle next year doesn't work though, I think we'll be done. And that is just scary. Perhaps we will consider adoption but I just don't know about that. Biggest thing will be guilt that we can't give our son a sibling.  Tons of people only have 1 child these days but IMO nothing is better than having a sibling who you have an unspoken understanding with. A sibling is a friend and confidant for life. And when your parents drive you nuts and start going batty, they will be there to laugh with you. I'm probably being overly dramatic. But it's a gift I want to give our son and I might not be able to. 

First things first though. Gotta get the beta done. Will post with those results tomorrow. 

3dp5dt

Not much to report today. I took a hpt this afternoon and it was bfn. So that means my trigger is gone:). Now when I poas on Sunday or Monday if I get a positive, I will be sure that it is positive and not just leftover hcg from my trigger. So that's good!  Other than that, nothing else is new.