Thursday, January 30, 2014

IVF Prep Appointment: Let's Get This Party Started

We had our first nurse visit yesterday. She spent over an hour discussing and demonstrating the various medications and injections. I tried to be patient, despite the fact of telling her that my husband, who was sitting right next to me, is nearly complete with his nursing bachelors degree.

We discussed the various testing that would be needed, primarily testing for every possible STD and then also CF genetic testing. C insisted that I failed to mention that he also needed to be tested today, which I still stand that I did and he just ignored that detail. Either way, I was amused. It's nice to bring him in as active participant every so often.

We both signed numerous consent forms, including the lovely hypotheticals. I may actually devote an entire to that aspect because, despite our many jokes, this was something that we put an enormous amount of thought into.

Then, finally, she pulled out the calendar. Not that the other stuff wasn't important, but let's be honest, this was really the exciting part. It basically came down to when C and I were "ready". For little impatient me, that was now. For C, it was a harder decision. He is in some very difficult classes and the retrieval and transfer dates could potentially fall into his finals week depending on when we chose to begin. The decision was basically between starting ASAP and hoping to finish before his finals, or waiting several weeks so that we miss his finals altogether. Luckily, I think C could read my mind, as the nurse was staring at us to make a decision, and he said that it would comfortable with starting earlier! So, without further delay, here is our schedule:

Wednesday, February 5th - First Baseline monitoring appointment
Saturday, February 8th - Begin Stimulating medications, repeat every 1-3 days as necessary
10 - 14 days later (February 17 - 21) - Retrieval
3-5 days after Retrieval  (February 19 - 25) - Transfer
14 days after Transfer (March 5 - 11) - Beta testing

After this excitement, we separated for excitement of a different sort. C submitted his sample to freeze and I had my hysteroscopy. The doctors were correct; this was not nearly as painful as the HSG test. It also was not pleasant. It was crampy and painful at times, but not as severe as it could have been, and didn't last long at all. I was able to see the camera, which really isn't as exciting as I was hoping. Although I suppose that's a good thing. The doctor did find one small area in my vagina that bleeds when it is touched. She told me that I may bleed sometimes during intercourse, which is really stating the obvious as this has been an issue that I've seen doctors for before, but then said was benign. Despite this, she decided to "just scrape it off" anyways, which was less than pleasant. Overall, it was ok and the results were normal. I felt mildly crampy afterwards, but was completely back to normal within a half hour.

C and I met back in the waiting room, knowing sheepishly was the other was up to just minutes before, and then headed down to the lab to get our blood drawn together. After several vials, we were each handed plastic cups and took turns using the restroom. I left for a half day at work, after a kiss, and we thanked each other for such a romantic afternoon. That is all. And that is just the beginning.


Tuesday, January 28, 2014

Teaching Myself

After teaching a relaxation exercise to a highly wound tween and explaining the effects of anxiety on her physiological responses to her parents, her father asked me a question. "As someone who teaches relaxation every day, are you a really relaxed person?" Ha! My answer had something to do with being able to relate and empathize with these kids.

In reality, I can only assume that reinforcing positive coping strategies on a daily basis in my work has been helpful for me personally. Who knows how stressed I would be otherwise. Sometimes I catch my thoughts taking over and heading straight into panic mode, but I can usually stop this before it gets out of control.

What if my procedure tomorrow is as painful and horrible as the HSG? What if they find something that counter indicates IVF? What if my random bleeding is suggestive of cancer? What if C's sperm quality somehow changed dramatically in the last 9 months? 

I take a deep breath and remind myself that it will all be ok. Things are rarely as bad as I fear they will be. The meeting with my boss last week was very helpful, not worth the anxiety it caused ahead of time. The "period" last week lasted only a day and my doctor didn't seem concerned (although I'd still like more of an explanation for this). Both doctors assured me that the hysteroscopy is nothing compared with the HSG. There has been no other signs that the testing won't be completely normal. If anything, C has only gotten healthier and there is no reason that he would have a significant change. Tomorrow will likely bring only positive news and more a solidified plan towards beginning our IVF journey.

My hospital has a "meditation chapel" for families of all faiths to find solace. I have been utilizing this room myself lately. After I am done with my work, when most everyone else is gone and the hospital is quiet, I will sit and think and pray. With this practice, I have developed a calming sense of acceptance. This will all work out. We will be ok. I will be a mother. Someday.

Monday, January 27, 2014

Sibling Rivalry

I've written and re-written this post in my head for months now. My hesitancy to delve into this topic reflects the raw emotions, guilt, and ambivalence I feel.

I have two younger sisters, one four years younger than I am and then another 3 years younger than her. I have always been closer to AE, the middle-sister, likely because we were much closer in age. We're not particularly similar. She was always more social, more into fashion and popularity, and much better at cooking and baking and crafting. I was the book-smart introvert who always bragged that I didn't need to learn to cook because I would make enough money to pay someone else do it for me (ha!). My other sister and I would often joke that she was the favorite, as she was pretty good at getting attention,  being dramatic, and getting what she wanted from our parents. I was never that savvy.

Despite our differences, we both played soccer and both were in girl scouts. We both tried to get good grades in school and we both started dating about the same time (not the same age, but the same time). AE had this tendency to do everything I did six months after I did it, despite her being four years younger. There was often this underlying competition that would bubble up when someone made the more competitive soccer team, or had a new boyfriend, or got engaged.

AE got engaged within four months of C and I getting married. She announced that she and her future husband were trying to conceive three months before her wedding, while C and I were just beginning to discuss the idea. She made it very clear that she wanted to be the first sister to have a baby, that being the middle child never allows her to be the first at anything. I was more than happy to allow her this win, naively assuming she had a 6+ month head start.

Nine months later, I'd been off birth control for several months to "regulate my cycles" and was realizing that this was not happening. AE was extremely upset each month when she would get her period. I saw my GYN who ran some tests, determined I wasn't ovulating, diagnosed me with PCOS, and recommended beginning Clomid. She thought this was a great idea and promptly made an appointment with her GYN, beginning Clomid about a month after me. And so it began.

Every month we'd be going through the similar treatments and comparing notes. Not that there are better or worse cases of infertility, but I would get frustrated when month after month I was non-responsive to the medications and she was. However, despite ovulating each month, she was still not getting pregnant. After a few months of Clomid, my GYN recommended moving on to RE and of course my sister followed suit the next month. Her RE was a little more aggressive than ours and while she was beginning IUIs, we were still struggling to find a medication regimen that would actually get my eggs to grow and ovulate.

She would call me frequently, upset that she only produced one egg, or that she ovulated earlier than expected and it wrecked her plans, or convinced that she wasn't pregnant within 7 days from ovulation. She would forget to ask how I was doing. She would put her foot in her mouth by complaining about her insurance deductible (that covers infertility) despite knowing that I have no coverage. I would listen patiently and provide empathy and support, like the big sister and psychologist that I was. But when we got off the phone, I would be upset and furious.

The breaking point was in November when I got the results that I wasn't responding to my last shot at oral medications. Since then, our relationship has changed, likely for good. We stopped talking at all for a while but have recently been calling each other more. Our sharing is more guarded, or at least it is for me. If she doesn't know what is going on with me, then I can't get upset when she says insensitive things because I can assume its out of ignorance. Needless to say, she does not yet know about our decision to move on to IVF.

My hesitancy towards sharing this is primarily because of the feeling as though I am betraying the AF community, or at least a fellow IFer. When people first find out that my sister is struggling with infertility at the same time, they express assumed gratitude that I have an automatic support system. As if we should be able to have an inherent understanding of what the other is emoting. Us IFers, we're all in this together, right?

I've just recently come to terms with the fact that just because we're suffering from the same disease does not mean that we cope with it in the same ways. None of us do. Honestly, there have been some blogs that I've stopped reading because their coping strategies and attitude towards IF annoyed me. But I can't stop "following" my sister. We just must accept that everyone copes and manages it in their own way, what works best for them. Just because we have one unifying similarity does not automatically make us the perfect supports for one another. To expect this would be synonymous to expecting people to grieve in the same ways and on the same timeline or to expect that someone in the middle of their own grief would be a great support for someone else at the same time.  Increased understanding should not be undervalued, but this alone does not make for improved support.



Saturday, January 25, 2014

Sharing is Caring


In our decision to choose which hospital system to move forward with for IVF, one of the options C and I considered was an egg sharing program. This program was offered by UH, along with >50% reduction in the total cost to me. The deal is that I would go through the IVF protocol as planned, but in coordination with another person, and then share half of my eggs. I had to share half, unless there was an odd number and then I get the extra. The program was designed as completely anonymous.

C and I considered this option for a few reasons. First, I've been told repeatedly that I have "too many" eggs and that I am expected to respond really well to super-ovulation for IVF. If I have 20+ eggs and end up with 10+ eggs, that should still be plenty for both a fresh and frozen cycle for me, right? This was my argument. The second reason is the obvious financial benefit. Money is unfortunately a serious factor in our reproductive decisions these days. The third main reason is my mom. I mentioned previously that my mom was a surrogate, almost 14 years ago now. I have a half sister and I was able to see, first hand, the wonderful gift that my mother was able to give to such a deserving couple. To be able to do something similar myself would be such a blessing and I would be honored. 

We/I ultimately decided not to go this route. On the more selfish level, the anxiety about giving away half of my options at a child was significant. What if I only have a few eggs and then lose half of them and don't have enough leftover for myself? What if she got pregnant with my eggs and I didn't? My mom was a surrogate after her own family was complete, not trying to accomplish both goals simultaneously. Additionally, neither C nor I felt comfortable with the anonymity aspect. C's primary concern was What if we have two children of the opposite sex and they meet each other one day and fall in love and never realize that they're actually siblings? As silly as this is, I couldn't argue. Science suggests that we fall in love with people are similar to us, and who is more similar than a sibling? My concern was a little more realistic, but less gross. With my half sister, we see or hear from her every year or so. I know generally how she's doing and what's she up to in her life. She knows that she has ties to a second family, but I know she doesn't think of us like that and that's a good thing. She can know her medical history if she wants and she can know her ancestry if she's interested. We don't have to look at every strange 14-year-old on the street and wonder if we might be related. I wouldn't want a strong relationship necessarily, although I would be open to this, but I also do not want anonymity and I don't believe that is in the best interest of the child. 

I told C that I didn't feel comfortable with the program at this time. I think he was relieved because he was trying to let me make my own decision about this (they are my eggs after all). But I did tell him, that after we have our baby, assuming my eggs are really as plentiful as everyone says, I do want to donate my eggs. I do want to give back and pay it forward. But I want to do it on my own terms and not at the same time that I am so pressured to build my own family. I feel good about this decision. 


Thursday, January 23, 2014

WTF Body!

Last week at my CC appointment, I was recommended to start birth control pills as early as that day. I believe the thinking was that I never seem to ovulate on my own, thus getting a period, so we could realistically start them whenever and then have more flexibility with timing. So I did.One week ago.

Yesterday, I started spotting, but didn't think too much of because my body is known to be a bit wonky. Today, on CD 30, I had a full blown flow. You read this correctly. The girl who never has a regular period on her without any medications, let alone ever as early as CD 30, began a period in the middle of taking birth control.

I'm not yet sure if this a good thing or a bad thing so I'm not stressing about it yet. I need to contact the doctor but I feel like a royal dumb-ass. Really, my primary emotion would be bewilderment. My damn body can never just follow the rules, listen the medication, and do what's it told. I learned this quickly in the course of treatment, but I'm constantly amazed at how it manages to throw me for the loop.

First there was the whole periods lasting between 1-10 days, at a duration of 5-13+ weeks. Then came the time when it decided to respond beautifully to the lowest dose of Clomid (oh how much easier life would have been) only to decide the following months that it really didn't like Clomid at all. Oh, and we can't forget the lovely experience of my period showing up on the very last day of taking the 5th Clomid pill, a whole 10 days after I thought my cycle had started. That was also an embarrassing phone call.

Despite keeping meticulous records over the past 18 months, I am never able to answer the simplest questions about my body. How long are cycles usually? I don't know. How long do they typically last? Dunno that either. What is the date of your last period? Ummm, I'm not sure. But I can say, without a doubt, that my body is irregular and ORNERY!

One last thing before I get off the topic of my body not playing by the rules... I was able to reach my old RE's office yesterday to get the results back from the AMH levels. They never told what they were so I assumed there was nothing to worry about, the the new/old RE wanted them before proceeding with IVF. For those unfamiliar with AMH, this is a hormone that indicates ovarian reserve. I was told they are typically pleased with any number >1.0. My results: >22! C's response to this was, "can this to too high?" and, of course, I don't know that answer either. I was told by the the nurse that it is common for people with PCOS to have elevated numbers, but she didn't really explain if this was a good, bad, or indifferent situation. So in the meanwhile, I just say, WTF?!?!

Wednesday, January 22, 2014

To Do Lists

I am back into planning mode. Tomorrow I meet with my boss to discuss options for taking time off on the retrieval and transfer days. He generally knows about me in infertility treatment and has been supportive of adjusting my schedule around, but this is a little different. For this, I will need cancel up to two full days, with minimal notice. I typically have 6-8 patients scheduled each day, who have been waiting 2-3 months to get an appointment, so this aspect gives me a lot of anxiety. I talked about it with Dr. F and she noted the contrast between psychology and medicine; I can’t just get another psychologist to “cover me” for the day. There’s this whole therapeutic relationship thing to contend with. I do generally have Wednesday afternoons for planning/paperwork purposes so my one thought would be to just move them to this day. My other option was to pre-emptively cancel my whole week and then add back in patients on the days that my procedures aren’t. I actually think this would be the preferable option, but depending on the timing of when we begin, I may already be completely booked so this won’t be possible. C told me to stop worrying about it when we don’t even know exact timing, but I argued that me worrying about it now will mean that I’m less worried about it when it’s happening (and when worrying is more detrimental). Sorry, this is really boring.

I also now feel the need to tell other important people, although I’m not sure how big I want this circle to be yet. Definitely our parents and siblings. Maybe some friends. Maybe other relatives. I do believe in the support of positive thoughts and prayer so this reality is in tension with my strong desire to be private. I know of a lot people who might like to pray for us. But then I also don’t want have to tell them that it didn’t work and we just blew our house money on 60% odds. Or have to tell people that we are pregnant before we’re ready. Oh geez, it feels like I just went through this.

My nursing appointment is scheduled for next Wednesday. We get STD and genetic testing and go over our calendar and specific plan together. Then C gets to have relations to a plastic cup to submit a sample for freezing and I get to be probed by camera for my hysteroscopy. How romantic. We also have to be decided on all the hypotheticals on this date, which we’ve been casually discussing in small doses and these discussions typically end with some joke about us getting divorced and who will get the dog.

Before this appointment, I need to figure out if the genetic testing will be covered by insurance and get my UH records transferred to CC. I’m also trying to get price quotes on the medicine, but I can only stand to work on this for so long because insurance companies are so infuriating.

Ready, Set, Break!

Tuesday, January 21, 2014

Ambivalence

Last night I asked C if we were rushing into this and being impulsive. He very quickly and assuredly responded, “No,” which was helpful, but then asked what my thoughts were. My thoughts are ambivalent. On the one hand, we/I have put a lot of thought into this. I’ve read scientific articles, received two sound medical opinions, and scoured our financial situation. All evidence supports this decision. I firmly believe this is the right way to go. We have the means (our home-down payment that is just begging to be used, albeit this wasn’t what we originally had in mind). I am only getting older, and my upcoming birthday keeps taunting me.

But then I hear about/read about others who have struggled for so much longer than us. Years longer than us. Numerous failed IUI’s longer than us. Miscarriages longer than us. Then I feel guilty about not putting in our due time before jumping to the big leagues. As if I we’re obligated to play in the freshman and then JV teams before being promoted to varsity. Cognitively, I know this isn’t how it works. I know this is silly. But then my minor ambivalence turns into anxiety that this will doom our chance at success and then I get panicky. Then I begin thinking about how we’re going all-in and we’re going to end up homeless* and childless. I then a take a few deep breaths and make myself some tea. For those just tuning in... I'd like to say I'm not normally this nutty, but I can't make any promises. Happy ICLW Week!


*Yes, I know this is dramatic. My parents have assured me that I will always have a home with them if we need/want. But I want my own home. Is it too much to ask to be a grown-up and have our own home and a child?

Sunday, January 19, 2014

Flip Flopping

We had a consultation for IVF (and other less-intense options if possible) last Tuesday with the doctor I love, at the competing hospital system from my employer (UH). He was very frank with us that there is isn't much different he would do this time to increase the odds and that he was in complete support of moving forward with IVF. We discussed the whole protocol, timing, and asked a million questions. Honestly, he answered most of my questions before I had a chance to ask.

He would have me on birth control starting with my next cycle so that we could have complete control of the timing. I would begin Lupron halfway through this cycle and then start taking stimulation hormones on the first day of my cycle. He recommends all patients give a frozen sperm sample to minimize pressure and timing issues. My egg retrieval could be scheduled any day of the week and then the transfer would be either day 3 or five depending on how the eggs were progressing (he avoided giving any strict criteria). They automatically do ICSI and assisted hatching with all embryos, at not additional cost. He discussed transferring either one or two embryos, per ASRM guidelines, and gave us objective data of pros and cons for both options, essentially leaving it up to us. He recommended freezing extra embryos for a FET cycle as Plan B, or for a second child one day, with a yearly cost for storage not billed until next January. He recommended genetic screening for me and required STD screening for both of us and a hysteroscopy for me, but not other testing was required since it had been less than a year since our HSG and Semen Analysis and other basic labs. He did not have any specific recommendations for other things to do that could be helpful, but did say that many of his patients find acupuncture helpful, and that he does not recommend bed rest after the procedure. Actually, to be clear, he jokingly told us we could head to Cedar Pointe based on all the research, but probably would recommend sticking with normal daily activities.

He was also very honest with the fact that their statistics are not currently on SART. Because of some political issues, which I know all too well from working in a large hospital system, he and a few other doctors left CC hospital a few years ago to re-establish the fertility program at UH. Because of this, the program is relatively new but the doctors are not. He said that their statistics will likely be lower than CC for the first year because they had some issues with the lab, but that these issues were resolved within the first few months and now he suspects that the statistics are comparable. I believe him and am personally not worried about the statistics, although my heart did break a little when I thought about people undergoing IVF during these initial months when their lab was being funky.

At the end of the appointment, we were honest that we may be considering CC hospital from a financial perspective. He was extremely understanding of this position and provided us with several specific doctors that he would personally recommend we see. This is good, because I wouldn't consider returning to my past doctor no matter what the savings and statistics showed!

I had the CC appointment this past Wednesday. (When I get set on something, I am far too impatient for my own good.) This doctor was a She, and she is extremely young, just graduating from her fellowship last year. I actually think of this as a good thing, as a young professional myself. I'd like to think that she's more driven and motivated for success, is more up-to-date on the research, and isn't yet set in her ways or too comfortable. This is clearly my bias, but I'm sticking to it. I also understand that she has less experience, but CC really focuses on the team approach of physicians, so I trust that she can turn to her more experienced colleagues if need be.

We actually began the consultation with me explaining why I left CC for UH in the first place. She very sincerely asked what my issues where and then candidly talked about how she might remedy these in the future. I said that the issues boiled down to two things, 1) that I felt my care and decision was very inconsistent depending on the day I came in and the doctor assigned to my case that day and 2) I felt like decisions were made for me and prescribed rather than allowing me to be a part of the decision making progress. She said that the second issue would be easy to address and proceeded to talk about all the different decisions that I would be a part of. The first issue is a little trickier, because they do have a team model, but she assured me that I could email her anytime and bring up any concerns or discrepancies.

She then told me her proposed plan. I could actually begin birth control pills immediately, given that I'm halfway through my cycle and never get periods on my own, which means could actually move forward quicker than I thought originally (did I mention I'm impatient). She would recommend an Antagonist Protocol given that my very high response to stimulant in the last cycle. Much of the other procedures were the same. She also recommended ICSI be done with all eggs, which is also a part of the package price, but did cite this as a choice that C and I could ultimately make if we chose. She said the embryologist would choose which embryos would freeze, often by letting them develop until day or 5 or even 6 and seeing which ones reach blastyocyt stage. She reported that their FET cycles were as good as their fresh cycles. The same tests were recommended/required and she did not initially mention having a frozen sperm sample but was very open to it when I brought it up. She did say that fresh sperm are considered slightly optimal so they would still want this as well if at all possible.

And then there are the numbers. CC's statistics are very promising. For Day 3 transfers at my age, they had a 56% pregnancy rate and for Day 5 blastocysts it was 80%. The frozen embryos transfers were comparable at 47%. And the other important numbers: price. As an employee at CC, I am given a 60% discount from the IVF package, making it less than $4,000. This includes ICSI, assisted hatching, and up to 5 monitoring appointments. It does not include any medications.

C and I decided, before my CC appointment, that if I felt comfortable with this new doctor and her plan, that we should take advantage of the discount. This would actually mean that we could afford both a fresh and FET cycle (if needed) and maybe still have some leftover for a home. This is something that we feel much more comfortable with.

So this is it. We're moving forward with CC and Dr. F. I'm an impatient flip-flopper. Let's do this!


Thursday, January 16, 2014

Action not Introspection

I have had writers block lately. On the one hand, I have a million things to say and updates to give. Yet I can't seem to form a coherent strand of sentences. I think I'm still in full-on planning mode. No time for introspection.

First, there was the issue of getting on the same page as C. We had some serious conversations about "what if...". What if we spend our house money and I don't get pregnant? How long are we willing to live with my parents?

Then came the issue of choosing a doctor. I know, I just went through this a few months ago. I love my doctor. I have complete trust in him. He is also at the competing the hospital and, therefore, clearly doesn't offer the [pretty substantial] employee discount for IVF. Is my comfort level for worth the significant extra expense? Do I risk returning to the hospital that drove me away just a few short months ago?

Finally, there's the issue of timing. Waiting a few months or pushing forward immediately? How will this affect work, with having several big presentations coming up and patients scheduling 6-8 weeks out? C is just beginning his notoriously most challenging class yet. The logistics of scheduling pre-testing appointments has been challenging. But when will our lives ever be conflict free?

Until we have a little more clarity, C and I have agreed to keep our plans to ourselves. Aside from me announcing across the internet, anonymously, a few days ago. There are many reasons for this, but it is definitely a sharp contrast from the previous situation where my parents were likely aware of my specific cycle day. I feels nice, so have this secret between just us for now. Maybe that's another reason I've been hesitant to divulge all on the blog.




Monday, January 13, 2014

Scholarly Series No.5: Protein Rich Diets Improve IVF Success

I normally wouldn't post a scholarly series on only a poster presentation, but this is especially timely... for me, because really, this all about me :). If we're going to step it up to IVF, it's especially important that we're doing everything in our power to make it as successful as possible. Unfortunately  there is lot of unsubstantiated advice floating around out there, based on rumor and superstition, rather than sound research. So for my next series, I will be working on debunking some of these myths and, more importantly, discovering sound research supported articles on complimentary medicine techniques. 

The following review is based on the press release from the poster presentation at the recent ACOG conference as well as the online radio show (Can Diet Affect IVF Success?with that study's first author on CreatingAFamily.org, aired on November 28, 2012.

Russell, J.B, et al. (May, 2013). Daily Protein Content Correlates with Increased Fertility and Pregnancy Outcome. Presented at the Annual Clinical Meeting of the American Congress of Obstitritians and Gynecologists, Monday Poster #96 

Summary

Traditionally, research has shown that individuals with higher BMI (body mass index) have lower fertility success rates, especially once BMI >30. However, this author noticed several patients that were within the healthy weight range and still had little success, so began asking the women about their diet. He found that they were consuming a huge amount of carbohydrates and minimal protein (<10% of calories coming from protein). 

The study presented compared the embryo development quality and pregnancy rates among women with daily protein intake >25% of total calories confused with those consume less the 25% protein, based on 3 day food logs. They found improved embryo development (54% reaching blatocyst formation by day 5 compared with 38%) and improved pregnancy rates (67% vs 32%) for the high protein group vs the low protein group. 

In the radio show, the author elaborate on these findings. He reported that protein amounts did not seem to make a difference until you were consuming at least 25% and then the impact peaked at 30% (so that consuming 90% protein is not any more helpful). He also found that there was an added benefit to reducing carbohydrate calories to 40% or less of your daily caloric intake. 

The author commented that he has noticed that this effect we helpful in increasing fertility overall (vs just improving IVF rates) and that when they began instructing patients to follow these dietary guidelines, they noticed that many couples became pregnant in the month waiting for their IVF cycle. 

When asking about how long you would have to follow these eating guidelines before it having an effect, he reported that 3 months is usually what he recommends. He reports that it takes an egg approximately 2.5 months to go from dormant to mature and that he has noticed some benefit with following the diet for one month, more benefit after two months, and optimal benefit after three months. 

Review

It's a little difficult for me to review the soundness of this research, as many of the details are not available since it is not yet fully published. However, given that it's been highly endorsed by ACOG increased my confidences in the research methodology and conclusions. I did specifically ask my RE at our recent IVF consultation appointment about dietary recommendations and he told me that there wasn't anything specifically supported in the research. So maybe this isn't as well known or as solid of a study as I would have guessed. 

Either way, my RE said that it wouldn't hurt. I put this into the category of things that might be helpful and likely won't be hurtful. Plus, it is something that is very cheap/free (I have to eat no matter what). On the radio show, the author describes his theory about how protein is related to egg (and sperm) development, and it makes logical sense to me. So personally, I am making a commitment to focus on my protein and carbohydrate intake. Now that is research in action!



Friday, January 10, 2014

Saying It Out Loud

I'm not sure why it's taken me so long to post about this. Our appointment was on Tuesday. We've been talking seriously about it since last weekend.

I think I am still trying to wrap my head around it. Or also I feel embarrassed and rash and impulsive. For the regular followers, this may not come across as much of a surprise. There's been plenty of unintentional foreshadowing.

We are moving forward on IVF. Skipping IUI completely. After only one previous ovulation and one HSG cycle.Yes, we're crazy. Jumping the gun. Rash. Impulsive. Impatient. Over-reactive. Pick your adjective.

For better or worse, this decision was primarily financially driven. It is also based on my history and research. Injectable drugs protocols are expensive and, unfortunately, we've learned that I do not ovulate on anything less. The last cycle was damned-near perfect and I didn't get pregnant. In talking with the RE, there really isn't much they would want to do differently, aside from adding in IUI which could likely help to a small degree but not significantly as C's sperm are not the issue. With another round of the same, I'd have very similar odds.

The likelihood is probably that with enough rounds of FSH/IUI, and assuming there isn't something else wrong that's gone undetected until now, I'd probably get pregnant. Eventually. The concern is that by the time we've exhausted several more round of this approach, we will no longer have the money or resources to pursue more advanced options (read: IVF). I firmly believe that our decision would be different if money were not an option, if we had insurance coverage: we would take our time and be more patient. But sadly, money is one of the biggest factors in the story of us making a baby; not love, not sex, not even science.

So after 18 months off birth control, one successful ovulation, and no IUI treatments, we are officially putting this behind us and moving on to the much more costly, and hopefully much more effective, option of IVF.

Wednesday, January 8, 2014

Scholarly Series No. 4: FASTT Trial

This clinical trial has been mentioned in some of the previous Scholarly Series  (here and here), so I had to look up the source itself. The attention it's been given by other researchers is primarily because it is one of the most recent and the largest, randomized control trials comparing different treatment models and has since been effective in changing policy in states that mandate insurance coverage. But I'm jumping ahead of myself with excitement.

Reindollar, R.H., Regan, M.M., Newman, P.J., Levine, B.S., Thornton, K.L., Apler, M.M., and Goldman, M.B. (2010). A randomized clinical trial to evaluate optimal treatment for unexplained infertility: the fast track and standard treatment (FASTT) trial. Fertility and Sterility, 94 (3), 888 - 899. 

Summary

This clinical trial randomized couples into one of two treatment strategies; standard approach versus an accelerated approach. In the standard approach, all couples initiated treatment with up to 3 trials of Clomid (100 mg, days 3-7) and IUI following a hCG "trigger shot". If this was not effective in three trials, they then received up to 3 cycles of gonadatropin/IUI, with the starting dose of 150 IU of FSH, which was adjusted based on the woman's response. If they were still not pregnant after these three cycles, the couples then received up to 6 cycles of IVF. In the accelerated approach, couples also initiated treatment with up to 3 trials of Clomid and IUI, in the same protocol as described above. Unlike the other group, if these couples were not pregnant after these three cycles, they then moved to directly to IVF for up to 6 cycles, skipping the FSH/IUI cycles completely.

All couples were considered unexplained infertility (i.e. no obvious tubal defects, regular ovulation, and normal sperm perameters) and were between the ages of 21-39. Couples were randomized into one of the two groups based on a stratified sample (<35 vs >/= 35) so that there would generally be consistency between these two age groups. A total of 493 couples initiated treatment cycles and underwent a total of 2,355 cycles.

The primary outcomes the study examined was "time to pregnancy" from initiating treatment and overall cost. They examined cost based on data from the insurance companies about how much was charged as well as adding in an estimated value of time lost from work ($17.43/hour based on 2007 national average wages).

In regards to time:

  • They found a statistically significantly shorter time to pregnancy in the accelerated group, with the the median time to pregnancy in this group being 8 months, compared with the 11 months in the standard treatment group. 
  • Per cycle pregnancy rates for Clomid/IUI, FSH/IUI, and IVF were 7.6%, 9.8%, and 30.7%, respectively, for each cycle. 
  • Within each group, 20.6% of couples had a birth with one of the first three months of Clomid/IUI. An additional 25.4% of the remaining standard group couples (43 of 169 couples) had a live birth in one of the three FSH/IUI cycles, and then an average of 67.5% of the remaining couples in both groups had a live birth with the IVF cycles (73 of 111 standard group couples and 118 of 172 accelerated group couples). So total live birth rates by the end of the study was 74.9% for the standard group and 77.7% for the accelerated group. 
  • Interestingly, 52 (14%) pregnancies occurred on cycles that couples were not receiving treatment. 
  • Multiple birth rates did not differ significantly between the two arms (21% in the standard group vs. 23% in the accelerated group). 

In regards to cost effectiveness:

  • The authors qualify themselves at the beginning of the article by stating that they would have needed approximately 800 couples to reach enough statistical power in order to detect meaningful differences. That being said, none of the differences that were discussed were statistically significant. 
  • Total insurance charges for all of the couples analyzed was $9.4 million dollars. To be completely honest, the financially-oriented statistics are well beyond my scope of understanding, so I can't say that I completely understand the following results... 
  • The authors looked at average total cost per delivery (i.e. they factored in improved success rates with accelerated track and divided the total cost for each group by the number of deliveries per group) and found that charges were $9,846 lower for the accelerated group (averaging $61,553) than the standard group (averaging $71,399). 
  • When looking at the average cost per couple (not taking into account success of treatment), the difference was $2,624 less for the accelerated group (averaging $41,211) than the standard group (averaging $43,835). It's important to note that these differences were not considered statistically significant, but was definitely trending towards significance. 
  • They also looked at the average amount of out-of-pocket costs, based on patient diaries and including time involvement, and found essentially no difference ($485 for the accelerated group vs. $495 for the conventional group*). 
  • The authors used some fancy statistics to simulate cost differences based on different prices of treatment options and concluded that the cost of an IVF cycle would have to exceed $17,749 to have a lower cost per delivery. 

**I should note that this study was completed in MA, where insurance coverage for infertility is mandated. The out-of-pocket costs reflect time involvement and co-payments for drugs and physician visits. I appreciate that this cost is FAR BELOW what most of us have actually paid out-of-pocket and, frankly, sickens me a little.

Review

Phew, that was a long summary! Sorry. Or, you're welcome. I guess it depends if you find this as interesting as I do and are still reading this.

I have many reactions to this study and the implications, but first, some thoughts on the design of the study itself. Overall, it's a pretty solid study with a great design. The most optimal design is a randomized, double-blind, control trial and the only aspect that these authors were missing was the double-blinding. This is obviously understandable as it would be pretty impossible for people to be unaware of which treatment option they were giving or the doctors to be unaware of what treatment they were giving their patients (this is generally easier when it's just a simple pill and then you can give sugar pills and no one knows anything!). My only real beef with the study itself is that they had a lot of strong conclusions about the cost effectiveness based on statistics that were not significant at the 95th percentile. I completely understand why, that it would have been necessary to get an additional 300+ couples and that would have taken a lot of extra time, but I think that these results should be a little more cautioned.

Here are all of my other, random thoughts:

  1. Eight months compared with 11 months is definitely a plus. No one can deny that. On the other hand, neither amount of time seems that exorbitant compared with what I hear about from others, or my current time-count for that manner. 
  2. The accelerated group did have slightly better success overall, which is consistent with the research that suggests that the longer someone is in fertility treatment, the lower their success. This is also something for me to keep in mind. 
  3. The fact that the authors concluded that the accelerated group had a (pretty significant) cost savings wasn't as important to me as just the knowledge that these two options are at least comparable. I had always assumed that IVF is so expensive so it would make sense to spend a lot of time and energy/expense on less expensive options before moving on. But this simplistic view doesn't account for the fact that IVF is also much more successful. I am reminded of the time that I went to an internist for migraines and she prescribed a sub-clinical dose of Imitrex. It helped a little, but when I finally sucked it up and went to a neurologist, I realized that there were WAY better options out there. 
  4. Given these conclusions, I am still a little amazed at how many physicians still seem to encourage people to go through so many cycles of IUI before trying a more aggressive treatment option. I wonder if they think that this is what people want to hear. Or there is some other fatal flaw to this study that I'm not seeing. Ah!
  5. I just have to bring this up again... couples with full insurance spent a total of $490 for their entire treatment! This makes me so angry at my state and place of employment and so jealous of the few people I know living in MA. I have honestly considered relocating to a state or at least company that offered infertility coverage. Not seriously, but I definitely did a mental pros/cons list on the issue. 

What are you reactions to this study? Will/would this influence your infertility decision making?


Monday, January 6, 2014

I demand you to delurk! Pretty please.

We're in the middle of International Blog Delurking Week, which I was so nicely informed of by Lollipop Goldstein. This is fitting, because I am constantly behind on all sorts of world events, local news, and weather reports (no, I did not wear a hat or gloves out the door this morning, unaware that it was about to morph into a sub-zero day). One of the major perks of living with my retired father is that I come home each evening to his boiled-down version of the local and national events that I should be aware of. Of course this is always his filtered version, and is often interspersed with random Dr. Phill "knowledge", but better than nothing. Another benefit is that he's making me stir-fry as I sit here and type this.

So the idea is to please tell me who you are so that I know who is reading about me. I am curious about this for two main reasons: 1) I love reading new blogs and making new cyber-friends so if I know you're reading, then I can read you too!, and 2) I'm slightly paranoid that someone who knows me in real life has found out about this thing. If that's that case, I'd really like to know. I don't think I'd necessarily filter out anything, but it would be good to know who I may be potentially offending.


As this is a fertility blog, I feel I should probably put something fertility related. Here's all I'm prepared to say at the moment: If I was in a relationship with Fertility on Facebook, my current status would be It's Complicated. Hopefully I'll be able to provide more updates before the end of the week, after all the thoughts swirling in my head have begun to settle into something reasonable.

Saturday, January 4, 2014

Second Thoughts

I went to pick up my prescription for the next round of Follistim+Ovidrell on December 31st, concerned that my insurance coverage would change for the new year. It turned out that they had actually billed me inaccurately the three other times I picked up the prescription last cycle! None of these medications are actually covered at all. Instead of the $65 co-copay per Rx (3 total for the cycle), the charge was $1,100 for just one prescription (3x300mg).

I should be extremely grateful that I received such a discount for our first round of injectables. In reality, I felt that this "great deal" was really an as-seen-on-tv piece of crap that looks like a great deal, but it actually a worthless pile of shit that breaks before you can use it.

I left the pharmacy without buying the prescription. At this point, it didn't matter if I waited for the new year. Plus, my ambivalence started to get the best of me. Is this really the right plan? Is this really worth the expense?

In an effort to make sense of this, I find it helps to write down all of my thoughts/arguments and get everything swirling around in my head out in print. Here is a glimpse into my thought process, organized and bullet-pointed:
  • History
    • I do not ovulate by myself.
    • I do not ovulate with the cheaper oral medications, both Clomid or Letrozole.
    • I did ovulate with an injectable regimen, but with 5 mature follicles and perfectly timed intercourse, I did not get pregnant. 
    • The one benefit of PCOS, I produce A LOT of follicles. Too many, even. I've been told this makes me a good candidate for IVF, but also a risk for OHSS and multiples.
  • Costs
    • I estimate the next course of injectables to cost between $ 3,950 - $5,650
      • Follistim prescription: 2 -3 prescriptions x $1,100 each
      • Ovidrell prescription: 1 x ~$100
      • Monitoring appointments: 4 - 6 x ~$300
      • IUI (assuming we still plan on this): 1 x ~$450
    • An extremely rough estimate of IVF costs, including meds and everything involved, is 15K. I haven't looked in to this much, as these wheels just recently started turning. 
  • Outcomes
    • Recent research estimates per cycle success rates of FSH+IUI at ~9%
    • IVF rates in centers around my area range from ~40-55% per cycle, although the RE had given me an estimate of 60% given all our other favorable factors
  • Resources
    • I have a designated medical Flex Spending Account (FSA) for $2,400 for 2014 (essentially, this is coming out of my paychecks, tax free, and I either use it up in the year or lose it)
    • We have approximately 15K in savings, which we have been scrapping for ever since we got married three years ago, intended for a future home down payment. So far, we haven't touched it.
  • Conclusions:
    • Not doing anything (i.e. trying naturally or with minimal intervention) would essentially give us no odds for success
    • FSH+IUI (the original plan) will cost approximately $5,000 for one cycle, using up the entirety of our year's worth of FSA and we will definitely have to begin dipping into the house fund. Adding IUI may add some specificity, but the odds will not be significantly greater than our last cycle, and I am doubtful that I will have 5 mature follicles again, as this wasn't even the goal. 
    • I am concerned that with another one or two cycles of FSH, we will no longer have the option of IVF because our funds will be mostly depleted. 
    • I am terrified that I will fall in the 40+% of IVF probability and be left with no child and no home. I always said I didn't want to do IVF unless we had enough money to do at least two cycles because otherwise the pressure would be too high. 
So what is the right answer? What factors are we missing? What else needs to be considered? The pressure of gambling with our life savings is bigger than I can put into words.



Thursday, January 2, 2014

28 Days

I was forced into a break so I decided to take it.

I've told myself that I have 28 days to not focus on infertility: 28 days to focus on work and my neglected career that I have worked so hard for; focus on getting healthy, eating healthy and exercising without hormonally-induced psychopathy and horrible physical discomfort; focus on socializing (and drinking) without concerns of timing; focus on living my life without waiting on results and blood draws.

I vowed to cut out sweets and refined grains. I resolved to workout daily. I resolved to not obsess about infertility.

In needing a complete break, I also took a short break from blogging. I needed to not think about IF, and that meant writing about it. Unfortunately (or fortunately) I now feel invested in the lives of others so I still followed blogs, but didn't comment (sorry).

~

The problem is that this doesn't leave me. I think about it daily. Definitely less than when I was taking medications and waiting for phone-calls from the nurses to give me the results and next steps, but still  thoughts creep in.

I work with children on a daily basis. Parents of my patients ask me if I have children of my own yet. Co-workers talk about their children. My parents talk about their future grandchildren. My dog is cute and reminds me of an eventual child when he cuddles with me.  I have 9 nieces and nephews that needed Christmas gifts bought, wrapped, and given. I watch TV and I still have a Facebook account. I can't escape thinking about children. I can't escape the desire. I can't pretend not to want something, not to care.

On New Years Eve, I had a minor panic attack over going into the next year without a confident plan, heading into the year I turn 30, and thinking about our financial situation and how we're going to manage everything that might be to come. We were headed to C's family with all 9 nieces/nephews and siblings awaiting our arrival. It was all too much. I feel like I'm leading two separate lives; the part of me that continues to live life and have other goals/dreams/plans and the part that is still stuck in this deep hole of childlessness.

Day nine. Nineteen more days to go before the possibility of moving forward. Nineteen more days to reclaim my life.