Monday 26 August 2013

We Need to Talk

"So, can we arrange to have the IVF talk?" I asked my RE, as I rose out of lithotomy position at my recent monitoring appointment. "Sure, we can talk now." he replied to my surprise. I was expecting to need to set up a separate visit, which would require insurance authorisation. I had a dentist appointment (for real) following my scan, but I figured since I was already nearly a year overdue for my cleaning, I could be a few minutes late. I wasn't going to pass on an opportunity to pick my RE's brain. I've outlined some of the details of our conversation, but I would really appreciate some insight from any IVF veterans!

Getting Started
Would need to start planning a month ahead. As I went into hypertensive crisis on birth control pills, he would prefer to start Lupron in my luteal phase. I offered that I could re-challenge the birth control pills by taking my blood pressure meds at the same time, as I did respond (relatively) quickly to them. I just have an aversion to Lupron, based on the experiences with my patients. He did point out that this is not Lupron in the way that I'm familiar with it, a 3.75 mg monthly injection or 11.25 mg three month depot, which is often used to treat endometriosis or fibroids, but rather a micro dose. It still gives me a little concern that the Lupron could over suppress my ovies, and I'd rather take my Labetalol and deal with my blood pressure to avoid Lupron if I can!

Ick-See!
Intracytoplasmic sperm injection (ICSI) is considered the standard of care for male factor infertility issues, my RE explained, also noting trends towards widespread use. "In you were only to apply indications, it's use should be about 20%, in the state of California it is performed in about 70% of IVF treatments." He commented that his own ICSI rate is about 65%, but some large facilities such as Massachusetts General have nearly a 99% ICSI rate.

Initially, I was dead set against doing ICSI as each week my Medscape update would feature some article regarding risks of ART and especially ICSI. A study published in May 2012 examined 309,000 Australian children and found 9.9% of ICSI conceived children had some birth defect, compared to 7.0% of conventional IVF babies and 5.8% of offspring that resulted from a roll in the hay. Interestingly, my greatest fear about procreating in general is autism. We're the typical prototype: Late thirties, Caucasian, middle class and educated. I don't know how I would handle the guilt if our progeny has autism. There was a reason why you weren't meant to conceive! This is what happens when you defy the natural scientific order! Those thoughts would haunt me for the rest of my life. One study found that there was no increased association between ART (did not distinguish conventional IVF vs ICSI) and autism spectrum disorders in singleton births. However, it was an observational study that only looked at 370 autistic children, so it doesn't reassure me that much. Looking through the UptoDate.com database, they note an increase risk of inherited structural chromosomal anomalies, which makes me wonder if we should karyotype Husband. Beyond that, studies examining ICSI conceived children until the age of 10 note no significant psychological, neurological or other health related differences. Christos Coutifaris, the REI Department chair at the University of Pennsylvania, concludes that outcomes for adverse health effects of ART are still incredibly small. "Even if there is some underlying process that makes some of these [children] susceptible to certain condition, the vast majority appear to be normal." Thus applying the infamous quote from David Grimes, "two times a very small number...is still a very small number."

Here's where the blogging community has made me so much wiser. A year ago, I was looking into minimally stimulative IVF options. Now I want to stimulate the hell out of these puppies and get as many eggs as I can produce. One of my father's best pieces of advice that he gave me was, "the more shit you throw against a wall, the more that's bound to stick." (Mind you I was only 10 or 11 and it was probably controversial to say 'shit' in front of your child...) However it seems so relevant now. My RE commented that he would strongly advise against even a split ICSI cycle. I shared that I estimate I may get a dozen eggs from my ovies and if half fertilise, we'll have 2-3 maybe 4 at the most with which to work. He thought that was pretty accurate. Leftover embryos? Oh, I won't even entertain that thought. I sure as hell won't let them be adopted by a fertile pastor and his wife.

To GPD or not to GPD
I expressed an interest in genetic preimplantation diagnosis. As per usual, my RE gave a very methodical answer that we didn't have a true indication; we're not carriers of an inherited condition and we haven't been through recurrent losses. He even noted that I wasn't at too high of a risk for aneuploidy at my age. Um, I'm an old bird, I thought to myself, but didn't interrupt him. I responded that I wouldn't want to receive abnormal screening results or discover a trisomy on a pathology report after a D+C. If we're taking the scientific approach, I want to exploit every advantage. He pointed out that it would cost an additional $3,000 - 5,000. Oh, and after referencing my age for the second time, he asked me to remind him just how old I am. I was flattered. Having someone think you're on the underside of the advanced maternal age status is akin to being carded in your late twenties.

I am having trouble selling Husband on the idea. As he just tends to see dollars and figures, he looks it as increasing the cost by 1/5 to 1/3. I see it as insurance protection to what is already an expensive investment. If we're going down this road, I want to get in right the first time. I tried to rationalise in terms of dollars and cents for him; we could get pregnant on the first try, only to discover after the fact that there is a chromosomal abnormality and need to start over with a frozen embryo (if we have one) which also costs $3,000 - 5,000, thus negating the GPD investment. This doesn't account for any of the emotional anguish. How hard would be be kicking ourselves if we were to encounter that situation? More so, what if we have no normal embryos? We would avoid all the financial and emotional costs associated with transfers. However, both my RE and Husband pointed out that transferring normal embryos still doesn't guarantee successful implantation and a miscarriage could still happen. They both seem to be on the page that we could just roll the dice and have a reasonable chance for a good outcome. I'm not sure I'm comfortable with that. It's not an abstract concept for me. I've scanned patients at nine or ten weeks and confirmed the absence of a heartbeat. I've delivered the diagnosis of an abnormal karyotype. For fertile couples, this provides some relief; an explanation for their loss. Once they recover emotionally, they just jump back in the sack and call with a positive pregnancy test in a few months. In our situation, the devastation is compounded by the frustration that we could have prevented this occurrence. We're still debating and discussing this item.

'Neat' or 'On the Rocks'
I pretty much already had an answer to this question. If an embryo makes it to day 5 and survives freezing and thawing, it is perceived to be a good quality embryo. Additionally, performing a frozen transfer at a later date allows optimal priming of the endometrium, which can sometimes be compromised during ovarian stimulation, especially in cases of OHSS. My query was based on the fact that their pricing structure designates a day 3 transfer.

A Weighted Concern
I know it is completely shallow, but one of my greatest fears about the IVF process is the potential for weight gain just from the stimulation process. I took notes on two of my patients who presented for their first prenatal visits after conception was achieved with IVF and both were ten pounds above their baseline weight. One was a triathlete, who had earned the 140.6 sticker on her car, the other was a gym rat. My RE just shifted in his chair and pointed out that I'll be gaining even more weight with my pregnancy. Damn it! this is the same response I give to my patients who ask about weight gain with birth control methods. there is nothing more annoying than hearing the echo of your own counseling. I quickly countered by referencing the stats on my patients and pointing out that ten pounds represents half of my allotted weight gain. He just sort of muttered "with exercise, you'll be fine".

I had some other questions such as benefits of endometrial injury, what point would we no longer consider a single embryo transfer, but would need to leave those to another day as I was seriously late for my dental appointment. Fortunately, they were able to still see me and I had a good check-up. Another item for my Resume of Life: Neglected dental health without any serious consequences. Score!





11 comments:

  1. I had no idea about the stats on birth defects and ICSI...unfortunately for us, it's not really an option. We have to do it. We bowed out on the PGD, though, since we barely have enough embryos to work with anyway so it's not like we're picking which ones are good to put back. As for the weight gain, I can safely say I haven't experienced it through my two cycles. When I did gain weight, it was from being depressed and not working out, not from meds. Then again, I keep exercising usually right up until retrieval, and am back at it fairly quickly afterwards. No one's ever told me not to, and it keeps me sane. I took a week break after transfer, but that's about it. With all the activity you do, I'm fairly confident that you'll be just fine weight-wise.

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  2. How exciting that you are already getting more info on your next steps!

    Like Aramis, I didn't gain weight with the actual IVF, but I did get a little softer in the 2 months I stopped exercising because of depression! Luckily, I'm back at it now.

    Also like Aramis, ICSI wasn't an option for us - we had to do it. I didn't know they were also going to use ICSI for the donor conceived embryos, as there was really no need, but they did. If I had known they were going to do that, I probably would have asked them not to. I like the idea of natural selection when you have the option.

    I personally wouldn't use PGD (unless you had a reason to) because I've heard there is a small risk of damaging the embryos. For me, the pros of avoiding the risk outweigh the cons of not knowing ahead of time whether they are genetically healthy.

    Good luck as you make all your decisions, I know none of this is easy...

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  3. I always appreciate your posts because you have expertise and first-hand knowledge from a different point of view, so thank you. I wanted to add that sometimes, I feel like my DH and my Dr. would make different decisions if they were the ones going through it. My DH worries more about cost than me, too, and I am more like you: I want to throw everything at it the first time to avoid a repeat. As far as the weight gain, yep, I've gained 10 pounds. After my initial horror, I've settled into my new "look" for the time being. I've been thin for years, and am still normal BMI, but it's just a situation I can't help. Good luck!

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  4. Sounds like you've done your homework. Few thoughts on each of your points.
    1) regarding Lupron: yes it's an awful, awful drug, but the thing to remember is that it's for a short period of time and is usually effective in quieting the ovaries. Especially in light if the fact that you're responding the way you are to BCPs, I think going that route is wise.
    2) I've also read the studies about ICSI leading to a higher rate of birth defects. But if you look at the stats compared to the general populous, it's a very, very low rate. Is ICSI always necessary? Probably not. But considering you're going to be throwing a lot of money at this cycle and because of the emotional windfall that comes from failed cycles, it's worth strongly considering. That said, I do know of plenty of women who have done the half and half option for peace of mind,
    3) for PGS: few things to consider with this option. First is that there are currently 2 types. One relys on using FISH and is considers inferior because it only analyzes a few chromosomes and a subset of markers. The one that is more preferred is the method that using CGH (comparative genome hybridization). Keep in mind, only a few clinics actually have access to this technology, so I would do some research as using CGH is the only option I think really justifies this procedure for someone like you. In addition, there is research that shows PGS doesn't increase pregnancy success rates. Hence screening to genetically normal embryos for someone who has no known genetic issues or who has nothing indicating the use of this technology is kind of a waste. In addition, if you do use PGD, then it wouldn't make sense to forego ICSI.

    I'll end by saying that you need to remember that IVF is both diagnostic as well as a treatment for a medical condition. Hence you will be learning a lot about your body with this cycle, so I would caution you from hand-tailoring a cycle, especially your first one. Granted it's hard not to when one has a medical background, but just as I'm certain your RE would not be a good candidate for performing open heart surgery, so too should you remember that the training and expertise for your RE makes them the best person to be making calls about protocols.

    Wishing you peace and hope as you begin this part of your journey to parenthood

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  5. I'm glad you got a free Q&A session with your RE! If I was in your position, I think I'd feel very similarly to you on all accounts. I've read the statistics on ICSI too (not sure why, but I have!). Random fact-- I've also read that two bloggers who recently went through IVF had more than one sperm attempt to fertilize their eggs. Not once, but at least two different eggs. ICSI would prevent that, although I'm not sure how common it is.
    I'm glad you're so knowledgeable about everything involved. It sounds like whatever choices you make, they will be very well-informed, and will be guided by your desires along with what your RE thinks is best. I'm hoping for a wonderful outcome for you with this IVF!

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  6. 1. Having taken both Lupron depot (3 month and then 1 month) and then regular Lupron daily shots, I can tell you that the daily shots were nothing. I had no hot flashes, no body aches, etc. If your RE thinks that Lupron is the way to go, I would do it.

    2. ICSI- because we also have MFI, we had to do ICSI. I didn't know about the studies beforehand and frankly, I'm kind of glad that I didn't know about them beforehand. That being said, I would have still gone with the ICSI because how devastating would it have been to go through the egg retrieval process, all the drugs, etc. and not have a single egg fertilize because we didn't use ICSI?

    3. If you guys don't have any genetic issues that you know about, I would save the money and not do PGD. It adds time between retrieval and transfer and then you don't need to spend the money.

    4. I gained weight right before my retrieval but it was partly due to being on a 1-month Lupron shot and with the body aches and laziness, I didn't work out, nor did I eat healthy. If I have to do this again, I think that I could have done a better job at reining myself and my emotions in, which would probably only lead to bloating instead of weight gain.

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  7. Thanks for the update. We did not do ICSI because M as super sperm, but it seems like basically everyone does it these days. We are considering PGD so we know if the embryos are normal/when it is time to move on to a surrogate or adoption. You are very fit so yes, you will likely gain weight on the stimulation, but it will be water weight and come right off (unless you get pregnant, which is teh goal!!!)

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  8. We had to do ICSI because of male factor. It would have been nice if we could have let nature take it's course in the petri dish, but we wanted the best fertilization we could get. I have heard of people doing emergency ICSI, basically letting the sperm do it's thing and if it isn't fertilizing coming in and doing ICSI to move things along. I can't remember where I read about that so not sure if that is a realistic option.
    We opted out of PGD. We considered it for our 3rd try just to see if there was something wrong that we were missing, but with so few embryos we didn't want to take the risk of damaging any. In the end, it wasn't worth it to us to spend the money since neither of us have a family history of genetic issues.
    I also didn't gain any weight from IVF. I put on a few after the first 2 failed from stuffing my face with comfort food, but the IVf didn't cause it. So it isn't a given that you will gain weight.

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  9. I love how this post is organized into sub-headings like a scientific article. I'm glad you were able to sit down with your RE and ask these questions. It sounds like you have some big decisions coming up; whatever you and your husband decide, I will be here cheering you on! And hooray for the good dental report :)

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  10. I've had depot lupron shots as endometriosis treatment, and like Non Sequitur Chica didn't notice anything from the daily shots. They may have oversupressed me though... No weight gain either.

    As for ICSI, from what I read many of those defects can be surgically corrected -- but as we didn't have much of a choice due to MFI we'd have gone with it anyway.

    We opted out of PGD, too. At least here that'd be on day 5, and even though my doctor's expectation was that I'd have many eggs and get some to day 5 easily, on day 3 they called us that they had selected 2 good ones earmarked for transfer. Not really a blastocyst transfer situation after all. (Our decision not to do PGD was long before this, of course.)

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  11. In always so impressed with how you lay everything out there. I know it's your background, but I still can't help but be impressed. First, I didn't think that Lupron was too bad. I used it for two separate protocols. The only real side effect the first time was that it made me incredibly sleepy. The second time, I hardly noticed anything at all and didn't even get the fatigue. We've only ever done ICSI. I didn't really know the statistics on possible birth defects from it, which I'm glad. I just always thought, why wouldn't you do it? Isn't it better to KNOW that sperm is reaching the egg and has a chance? I'm torn on the pgd. While it would be nice to KNOW which ones were healthy or not, that is not something that is known for certain in most pregnancies anyway. Also, we never had very many embryos to work with, so I didn't want to take a risk of damaging them in the process. If we had lots of embryos, then I met have felt different about it, but only if we could have afforded the cost, which we couldn't so it didn't matter anyway.

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