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!!
Sunday, January 10, 2016
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:
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...
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...
Subscribe to:
Posts (Atom)