The Next Steps in our RPL Journey

  Posted on September 13, 2014 By in Recurrent Pregnancy Loss

  47 Comments

We saw our RE on Friday.

Some would say we have a bit of going-forward plan.

Some would say the plan has some pretty big gaps in it.

Regardless, all I know from 2 years into Recurrent Pregnancy Loss, is that the best laid plans mean nothing. But, I’ll try to explain everything we discussed with our RE. I should point out, I love our RE – he is amazing and always takes the time to answer my questions in a way that I can understand them. Every time we see him, we have some pretty awesome conversations about all of this and I do feel like he is looking out for our best interests, even if his medical advice doesn’t necessarily feel useful due to our unexplained diagnosis.

Going in we didn’t expect a miracle cure (although we always hope for one), and surprise, surprise, we didn’t get one.

Here’s the summary of the discussion:

Our RE does not believe embryo adoption is a practical route for us. First, here it is almost unheard of for people to donate or allow other people to adopt there embryos – if we want to do this within our province/country, we would have to find someone who has some left over from IVF and do some sort of private adoption agreement. Different counties have different laws, so we may be able to pursue this outside of Canada and then presumably pay big dollars for it. Second, he’s pretty confident it won’t solve our problem because our karyotyping is normal, so we should be able to produce a healthy child ourselves. So, why spend tens of thousands of dollars on something that will likely have no effect on the outcome?

If we are adamant about trying something different from a genetic perspective he suggests either turning to donor eggs and/or sperm because they are more available (although costly). He is still does not think this will solve our problem, but it’s the route he would recommend due to the lack of donor embryos. He also stressed that if we are able to create a fertilized embryo using some sort of donor product, this will not change our chances of having another miscarriage.

We also discussed doing In Virtro Fertilization (IVF) with Comprehensive Chromosomal Screening (CCS) to see if we find anything. We have discussed this before, and know that it is unlikely to provide us with an answer. And, again, this will not change the likelihood of another miscarriage. So, we could spend $30,000-$50,000+ and have the embryo’s all look perfect and end up with the embryo’s not sticking right away or just have another miscarriage. Or we could find that all our embryos are screwed up, but still be no further ahead because this can happen to anyone going through IVF. So, unless we are made of money (and we are not) and feel like going through IVF in hopes of finding something through CCS, then why would we do this?

We also spent some time talking about the fact that we are still not pregnant again.

  • Our RE was just as surprised as us that we are not pregnant yet. He simply does not count the biochemical pregnancy, so for the sake of argument, today I will not either. So, this means we are now in cycle 5 of trying – 50% of all couples will be pregnant within 6 months of trying. So, he is not worried about us at this point. He believes we are falling back into the normal timeframes for people to conceive, rather than being at the head of the bell curve as per our last 4 pregnancies. I absolutely hate it, but it is nice to hear that it’s not a medical worry at this point.
  • To be proactive, I will be tested this month to confirm ovulation. And, to be proactive my husband will have a semen analysis done. Our RE fully expects both to come back normal, since we have been pregnant 4 times within the last 2 years and 4 pregnancies indicates reliable ovulation and reliable sperm. But, he wants to be sure something hasn’t changed and we agree. So, I’ll get some blood work done on CD 21 – next week. My husband will go in October (when the next available appointment is).
  • Broken ankles do not impact sperm quantity or quality. There goes that theory.
  • If we pass the 6 month mark of trying without success, he recommends introducing either clomid or letrozole. For people our age (31), 6 months is not a concern, and would not warrant a visit to an RE in our medical system (the requirement is 12 unsuccessful consecutive cycles for couples under 35, and 6 unsuccessful consecutive cycles for couples over 35), but since we are seeing one he would not want to see us wait until the normal 12 month mark given all our RPL history. More than likely he would put us on letrozole and he suggested I research them both but focus on letrozole in the next few months (if anyone has any thoughts on clomid or letrozole, please let me know). The idea being that they should increase our chances of getting pregnant (5% risk of twins, and 1% chance of triples because I already ovulate normally). My husband and I both expressed that we are not really interested in taking these drugs because we know I ovulate, so what’s the point? But as I always like having a plan, I am happy to know what he will suggest if we still are not pregnant by November.

Immunology was one of the big topics of the appointment. As we suspected he doesn’t really buy into the whole idea. And surprise, surprise, he never received a letter from my immunologist. But, we discussed what my immunologist said (read that here). So, our RE doesn’t see a big deal with reducing my gluten intake, but he really doesn’t think it’s the answer. He agrees that there are some doctors outside of Canada who have made their profession of treating RPL and immunology together. But, he stresses that the research does not support the link, and it is his opinion that the risks associated with many of the medications they use during the first trimester outweigh the benefits of taking them. For example, we spent a lot of time discussing the idea of a low dose steroid in the first trimester. Research indicates that it doesn’t make a difference to a creating a viable pregnancy, but there is strong research indicating low birth weights and other complications for the baby if it makes it to term. Needless to say, we are at a loss right now on whether or not to pursue the expertise of someone like Dr. Braverman or not. Our big thing has been having a healthy child, not just having a child, so my initial reaction is that I would rather not introduce medications into our next pregnancy that could have long term negative effects on the child

As for trying something slightly different with our next pregnancy, our RE would rather put us on daily heparin shots then a low dose steroid, as there is more research indicating that it can help in creating successful pregnancies for RPL patients and it has no harmful effects on the baby because it does not cross the placenta. So, this may be something we do next time we are pregnant. But even then, he doesn’t see heparin as providing enough benefit to do it. Either way, if we push for the steroid or the heparin, he will work with us and treat us.

So, for now, we keep trying the old fashion way, which has proven rather successful for us. Our RE made it clear that there is no need to panic (which of course my husband loved, because he’s been saying that to me for a few months now).  We will continue on our current plan* with the possibility of adding heparin into the next pregnancy.

And while we wait to see our RE again in November, at the same time we will be thinking very hard about a few things:

  1. Do we want to pay out of pocket to visit an RPL specialist? Possibly Dr. Braverman.
  2. Do we want to consider going out of country to try embryo adoption?
  3. Do we want to venture into using clomid or letrozole to help encourage a pregnancy, knowing that we should get pregnant on our own if we are patient? And of course, we cannot neglect to acknowledge that getting pregnant doesn’t mean we will actually maintain a pregnancy.

It is unlike us to rush into any major decisions, and we are only 31 so age is on our side, so we will take the time necessary to think through our options and make an educated decision. If we are lucky we will get pregnant before we have to make any decisions and the baby will stick (so far we have never been lucky in our attempts to have children, but a girl can hope, right?).

If anyone has any thoughts or experience with any of the above 3 options, we would love to hear them!

* Note that this post is all about what our going forward plan is.  We already have had extensive testing completed over the last year or so – We have undergone what feels like hundreds of tests, including the standard RPL testing. And, we have pushed for tests outside of the typical tests as we believe we needed them. Just to name a few of the tests we done – Hysterosalpingogram (HSG), Sonohysterogram, karyotpying on my husband and I, karyotyping on 2 fetus’, blood tests for multiple immune issues, etc.. And, every single test has come back perfectly normal. Like, perfectly normal.  Also, know that our already existing going-forward plan includes daily baby aspirin, prenatal vitamins, daily vitamin D and low dose synthroid (I have had a perfectly controlled hypothyroidsim with no fluctuations on low dose synthroid since 2009 – before we started trying to conceive). Once we are confirmed pregnant we start on progesterone supplements as well.  Note that we lost our fourth baby while taking all of the aforementioned medications except baby aspirin.  This was not introduced earlier because I have a history of stomach ulcers and my husband and I chose not to risk it.  After our fourth loss, we have decided to risk a stomach ulcer and I am now taking daily baby aspirin.  We have since had a biochemical pregnancy where we took everything including the aspirin and that pregnancy also did not work.

If you like this post, please feel free to share it and please return to myperfectbreakdown.com to follow my journey.

 Tags: , , , , , , ,

How I Have Let Fear Define My Life

  Posted on September 12, 2014 By in Psychology

  11 Comments

I have let fear define many elements of my life. Not necessarily the elements that someone would expect, but fear was the guiding decision making factor.

20140912 - How I Have Let Fear Define My LifeAs far back as I can remember, I have always been willing to take engage in risky, highly adventurous activities. As a kid I always stood on the tips of my toes to get onto the biggest rollercoasters. At 18 I jumped out of a plane and went skydiving. At 28 I went into a cage with a 440lbs (200kg) tiger and dragged my rather reluctant husband along to take photos. I have never been one to say no to an adventure and the adrenaline rush based in fear of an extreme potentially life risking activity.

Yet, when it comes to my big decisions in my life, I have let fear into the equation.

As a kid, I dreamed of being a lawyer – yes, I was the type of kid. I had no dreams of a big white wedding, or fairy-tale romance or becoming the next princess. Instead, my Barbie’s were always lawyers. In fact, if I dig out my grade 6 year book I made mention of aspiring to be lawyer. To this day, people assume I am a lawyer. On a regular basis, I am asked why I am not a lawyer. Well, I can assure you I am not a lawyer. I never wrote my LSAT and I never went to law school, instead I went to grad school in a completely different field. I didn’t become a lawyer for 2 reasons.

  • First, I had never failed anything in my life, and I didn’t want to fail the LSAT. Or, what if I passed the LSAT, and still didn’t get in? Simply put, I was afraid of failure. So, because I was drastically less likely to fail, I applied to grad schools in a couple different fields and got into a few.
  • Second, I chose not to go to law school because I wanted a family friendly career. After meeting with a few female lawyers, and having them tell me that it is not a family friendly profession and they chose not to have children and in fact were not able to manage long term relationships very well. And while I know some women have done it all, I came to believe that I could not be the lawyer I wanted to be or the mother I wanted to be at the same time. (Needless to say no the irony of this is decision making criteria is not lost of me).  I should also point out that I now know a few female lawyers who are amazing mothers, so I mean no disrespect to anyone.

To this day, my husband still comments on the fact that he thinks I should have gone to law school. And to be honest, if we don’t have kids, part of me thinks I should do it. But, truth be told, after my life experiences in the last few years, I now have no interest in the hours required of an articling student. I think I needed to do that in my younger years, so I really doubt I’ll ever go back to law school. Funny how life works out sometimes.

Anyways, this isn’t a post about my coming to terms with not being a lawyer. Although, it is starting to turn into that. So, moving on.

Another example of letting fear help make my decisions was my adamant refusal to stop working when everything started to crash in on me a few years ago. The short version of the story is that I hated my job in a high stress industry and worked way too many hours for an employer who wasn’t always nice, and we also started having multiple miscarriages and high risk pregnancies and all the medical appointments that come along with that. I couldn’t balance everything, it was becoming evident to me, and possibly to others. Medical advice was that I should leave my job and take a break, I ignored it. Funny enough, I sought out professional advice on strategies to reduce my stress and learn to cope, but then I quickly ignored the advice I was given. Why did I ignore the advice? Simple, I associated the decision to quit my job with failure. Failure to do everything, and to do so perfectly. I couldn’t imagine letting myself down in such a tremendous way. (After our 4th loss, it became evident that something had to change. And here we are today, I’m nearly unemployed by choice and am working to learn to live a more balanced lifestyle).

Oh, and we cannot forget the giant impact fear is having on our decision to adopt or not to adopt or the possibility of living childfree.

But, here’s where I have to ask myself, why have a let fear have such a tremendous impact on these rather important decisions?

Was it fear of not leading the perfect life (as defined by my very high personal standards) and letting myself down?

I have always set insanely high standards for myself. My definition of perfect has no room for even the smallest of errors. I would never expect others to meet these standards, but anything less than perfect and success has never been something I’ve allowed for myself. (Hence, the name of my blog – a little play on my obsession with perfect, even when I’m clearly going through a significant life altering experience). So yes, letting myself down was a significant factor in letting fear influence some pretty big decisions. This just might have been the most important factor in all of this.

 

Was is fear of letting others see me as weak?

I have never been one to care too much about what other people think. I firmly believe in leading a positive life and leaving a lasting positive impact on the world. Yet, if someone doesn’t like me then I don’t tend to care too much and don’t tend to lose sleep over it. I realize, just as I don’t like everyone I encounter, not everyone will like me. Yet, having lived a life defined by academic and professional successes, it is very hard to let people see the vulnerability that exists. It’s one thing for me to struggle with something, but it’s a whole other thing to tell my professional colleagues what struggles are going on in my personal life. I have always kept my professional and personal lives very separate, and now I had to bring them together and let others know what is going on in my personal life and also acknowledge that not everything is perfect. So really, to start telling people about our challenging path to parenthood, and that I’m taking a break from work became about sharing my vulnerability and admitting that I’m not perfect. But absolutely not about shame or embarrassment over our situation, it was purely about letting the perfect façade come down and the type of personal transformation that required from me.

 

Was it fear of letting my husband down?

Yes, absolutely there is fear of letting my husband down. He fell in love with and married an unbelievably practical person driven by rational thought. And now, all the sudden, I am making decisions based on emotional criteria. Even though we made the decision together, taking a break from a high paying career to focus on me, my health, and our potential child’s health is so different than anything I’ve ever done before. So yes fear of letting him down is ever present.

Was it fear of letting my dead mom and sister down?

As for letting my dead mom and sister down, I almost laughed out loud when I wrote this sentence. First because it is so very true. I think in some ways I decided long ago, while I was still a teenager, that I have to lead the perfect life to honor them and make them proud. In some sense, I think I felt that if I was the one left alive, I had better make it a good life.  In a way living my life and living for my sister as well.  Second, I laughed because they are dead, and so have no way to be proud of me. I’ve let the idea of making two dead people proud of me influence my life in extreme ways. How very, very odd for me, a person lead by practical and rational thought.

So, I think my fear is grounded in all of these things.

While, I wouldn’t say that I my life revolves around fear, I would absolutely acknowledge that I have let fear of failure and fear of letting myself down and fear of letting select others down, play a part in my decision making.

More often than not, I can recognize when fear is playing a role in my decision making, and I am able to make a decision to push ahead in the face of fear. Or, I can recognize that fear should exist and doesn’t (i.e. tiger cage). But, now that I’ve spent time thinking about my relationship with fear, and therefore learning about it, I am more able to analyze why my fear exists. What is the root cause of my fear? What does the fear mean to me? And, what should I do based on where the fear is coming from. What has become important to me is to acknowledge why the fear exists and is part of decision making. Then, and only then, am I able to make an educated decision on what influence I should let the specific fear have on my decision making.

 If you like this post, please feel free to share it and please return to myperfectbreakdown.com to follow my journey.

 Tags: , , , , , , , , , ,

Follow My Perfect Breakdown on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Copyright
Unless otherwise cited, all content, photos & text, are property of the author of "My Perfect Breakdown" and cannot be reproduced without permission. Should you like to use something, please contact the author for permission.

My Perfect Breakdown

Blog at WordPress.com.