Saturday, July 13, 2013

A commentary on the practice of medicine and what lies ahead.

One of the worst things that I realize I do during the TTC process is become too immersed in it. When I was trying to get pregnant, I would google and run pubmed searches till I could practically recite the study results; I chased down every possibility I could think of, and I thought of a lot.Some of that paid off though. I just wish I had done less of it.

The same issues are starting to rear their heads back again now. I've examined practically every study that compares IVF protocols and have obsessively examined those that look at  blastocyst aneuploidy and quality.But anyway, I think I've learned a lot, and I'll be updating both the science of infertility page, and creating a new section on IVF. 

I was talking with my RE's wife (also an RE; a really sweet lady who did my retrieval) about how well this cycle worked out and I commented that a lot of it might have been due to the protocol I tailored for myself (I also tweaked it on the fly) and she joked that I should consult for the more difficult cases, and I quipped back that I would, if I got paid for it. But there is an important take home message here: even among a group of patients labeled "infertile," there are subsets with unique issues. Recognizing those issues, tailoring each protocol individually, being invested in the tiny details, and making changes based on those details as the treatment proceeds may be what is required to optimize your treatment.

As an example, I decided to check LH levels during my treatment (my RE only checks E2). Everybody responds different to both the agonist or the antagonist. I realized that with the antagonist, my LH was getting too suppressed, my E2 was not rising as it should have been (E2 production DOES require LH), and the follicles on the right were lagging (13 mm, as opposed to 19 mm on my left).  I decided to add back LH (in the form of menagon) on the last day of stims. We did not check E2 or follicle growth after that, but the results on egg retrieval day were fabulous; my right ovary had caught up and made even more mature eggs than my left. Was the situation helped by the low-dose LH add back? Impossible to say, but plausible.

Unfortunately, few take such a detail-oriented approach, or have the sort of attitude necessary for such an approach. While patients of a particular disease type fall into into subsets, medical treatments today use a broad strokes approach; the same freaking approach is used to treat everybody who comes your way. I have rarely ever met a doctor who is maverick and intuitive and adjusts the protocol (ANY treatment protocol) on the fly. It takes a rare sort of personality to do that. What REs do when you do not respond (which is the club-on-the-head approach of pushing the stim dose up higher and higher) does not count.

The only doctor I've come in contact with who is truly intuitive and maverick and can to an extent accurately delineate between the shades of grey of human biology is my mother, and the sort of intuitiveness about what is the issue and what may work that she has is extremely uncommon. Her results speak for themselves; she is in a field where the doctors end up doing very little to help their patients, while her methods produce a near to full recovery in a pretty high percentage of her patients. 

Btw, when she was giving me sub-cutaneous injections, we discovered something nifty: Instead of squeezing a wad of skin for sub-cut injections, try stretching the skin out with your fingers; I did not even feel the needle go in. The few times I got the traditional grab-fatty-skin-and-plunge-needle-into-the-pinched-up-wad-of-skin approach (from the nurses at the clinic), it hurt way more.  

Anyway, I digress. Coming back to medical approach and its effect on the success rate, there are some IVF clinics in the world that may show a level of success that surpasses that of their peers, and one of them is CCRM. I visited their webpage for the first time the other day, and I was impressed. Forget about protocol optimization (but please, blog visitors, feel free to talk about your experience with respect to this, it would be very useful), they use an embryoscope that minutely tracks the growth of each embryo, they do PGD, and they freeze their embies one per vial (they have to, if they are doing PGD)...I was practically salivating. But god knows, I don't want to go through another IVF or pregnancy again. Anyway, the time of reckoning is coming up quickly. Transfer to the surrogate occurs on Tuesday.

Then begins an interminably long wait: my RE's clinic believes in testing 12 days after a 5-day blastocyst transfer, which does not seem logical. It would make sense if you were doing a 3-day cleavage embryo transfer (because then you would be testing on the 15th day of embryonic life), but it just prolongs the wait (and the torture) if you want to wait until the 17th day of embryonic life. And given that in every pregnancy (even the one with the Trisomy 4 blastocyst), I had a positive HPT by the 10th day of embryonic life, my RE's assertion that "testing 10 days after 5-day transfer may be too early" cannot be taken seriously. Let us see how putting my foot down goes. But here we go again, soon.

9 comments:

  1. I admire your ability to stand up for yourself about medical decisions. My clinic waits 12 days after transfer for for blood tests also.

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  2. I love your posts. So interesting to read, and wonderful to know that you were self reliant enough to tweak you own protocol. I had a go at tweaking mine when I got pregnant with my baby - and even had to run into my RE's office pretending to have injected on the wrong day (and wrong amount). But it worked!

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  3. Thanks Nell. In this case, the overlong wait can be easily addressed by home HPTs so its not too big a deal, but sometimes it is, and that is when the patient has every right to stand up for themselves because they are paying for everything and its their physical and emotional well-being on the line. they should not have to take crap from anybody. Its easier said than done though :(

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  4. Thanks....what you did is super cool! I just talk my doctors into exhaustion and submission, which is not nearly as interesting :P

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  5. Wow this is so informative and your mom ROCKS!! That's amazing!

    I am so glad your "tweaking" produced such amazing results.

    I am praying that the wait isn't too terrible and the results are a glorious BFP!!

    :)

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  6. Rebecca (Which Way to Baby)July 15, 2013 at 9:25 AM

    Regarding C.C..RM, this is just my opinion, but I think the biggest contributors to their success are the amount of testing they require in preparation for cycling and their lab (not necessarily in that order).

    My first IVF was at another well-known clinic. 30+ eggs, ~21 mature, 17 fertilized, still had all 17 on day 3, transferred 2, 10 of the other 15 made it to freeze at day 5, 8 of those 10 successfully thawed and were transferred over the course of 3 FETs. Fresh and 1 FET were BFN, the other 2 FETs were BFPs that miscarried in the first tri, including 1 that tested as complete Turner's Syndrome.

    With all that information (we didn't do PGD on that cycle, and CGH wasn't available back then), our first cycle in De.nve.r used the exact same protocol, and we wound up with literally almost identical numbers, including 10 blasts on day 5, which were biopsied for CGH (which is why we went there). We wound up w/6 abnormals and 4 no results.

    Even with that, originally the plan was to do the exact same protocol a third time. R and I had decided it was going to be our last retrieval, so I raised my hand and said, "Really? Why would we do something a third time that didn't produce any successes the first two times, and that we know produced confirmed results of abnormalities?" So the proposal came back to do an antagonist protocol even though I don't have any issue producing eggs and have PCOS. (Ironically, that was the same protocol that our RE from our 1st IVF would have recommended had we cycled with him again.)

    So we did that and wound up with 21 to test, 15 tested normal, 1 has resulted in a living, breathing baby, and we have 12 left. But I think it's very possible that we might have done the same protocol a third time and wound up with very similar results as the first two cycles if I hadn't spoken up...

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  7. This was a super helpful comment; thank you so much for sharing. Yeah, it makes no sense when something that has not worked twice is repeated a 3rd time. I'm so glad you caught that and spoke up. Your 3rd IVF is the most successful of anything I've ever heard of (15 normals!), that is just amazing.


    Out of curiosity, what was the protocol the first 2 times around?


    Also, about the last bit, because I'm using a surrogate, home HPTs are a bit trickier, so I'll probably have to wait for the beta. If it were up to me, I'd be testing by 9 DPO :(

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  8. Thanks Michaela, nice to hear from you :)

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  9. I go to CCRM and have always been very very pleased. We did PGD and CCS overnight testing of our embryos. Our of 5, we had 4 normal blasts: 6AA, 6AB, 6BA, and 6BB.

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