Saturday, April 28, 2012

SMA & genetic testing

http://gma.yahoo.com/blogs/abc-blogs/parents-bucket-list-dying-baby-girl-goes-viral-180155213--abc-news-topstories.html

I just read this article about a baby, Avery, who has spinal muscular atrophy (SMA) and will likely die before her 2nd birthday.  In order to celebrate the time they had left, her parents created a bucket list for Avery and are blogging about the things she accomplishes off of her bucket list.

SMA is one of the genetic diseases that our fertility doctor recommended we test for.  I spent some more time today looking into one of the tests that the doctor gave us a brochure for.  The company is called Counsyl (counsyl.com) and they offer what they call a "Universal Genetic Test" that tests for 100 genetic diseases.  One of my first red flags was that they did not give the cost for the test on their website.  I don't like that.  If you want me to consider buying your product, I need to know what I'm going to be investing before I get involved.  They did say that many insurance companies cover it and that  "a discounted cash price is available for the Counsyl test".  That is my second red flag.  If you can offer a discounted rate, why don't you just offer that to begin with?  Why do you have to charge more?  Anyways, it looks like the test is about $350 for one person and $700 for two.  After reading more online it looks like this test was originally offered straight to the consumer, but is now available only through doctor's offices.  The most current information I could find, not from the company website was 2 years old.


I think the most telling fact was this:  Counsyl executives say 35 to 40 percent of people tested are carriers for at least one disease in the test. In about 0.6 percent to 0.8 percent of cases, they say, both members of the couple are carriers for the same disease.  So we have a less than 1% chance of carrying the same disease and even then it is a 25% chance of having a child with that disease if we are both carriers.  What is 25% of .8%?  However, I think it all boils down to fear and guilt.  How scared are we of that tiny little percent affecting us and how guilty will we feel if we do have a child with a genetic disease and hadn't done any testing beforehand?


What is also a little scary is that as the doctor mentioned, most pregnant couples don't get access to this information because they don't have the pre-pregnancy doctor's appointments.  They just get pregnant.  So these tests are being offered to the people who are already desperate for a child and probably most vulnerable to the fear factor I mentioned.  Who wants to work this hard for a child and then risk losing it, no matter how small the risk.  I don't mind fear tactics in advertising, I can tend to shrug them off (home security commercials come to mind).  However this test seems to be specifically targeted to the people most vulnerable to those tactics.  Doesn't make me want to jump at their test very much...


The other option she gave us was a test for the two most common genetic diseases, CF and SMA.  Not sure about the cost as that's not being offered by an outside company.

I had written earlier that I was unsure about getting the testing done for various reasons, some of which I mentioned above.  However I am fairly sure I will be getting the testing done, most likely the more limited one.  I think the thing that really convinced me (brace yourselves, the mother of all bad reasons is coming) was the picture of the parents in that article.  It wasn't the picture of the child or even the description of what she is going through.  But seeing them and knowing that this disease could affect people like that...those people seem to be the perfect model of everything society wants.  They are beautiful, look well-off, happy, college sweethearts, etc.  If these paragons of society can be affected, then anyone can and I don't want to take that risk.  (I know that is a very stupid reason to make a decision.  Don't say I didn't warn you)

Thursday, April 26, 2012

Teacher Fired for Infertility

http://news.yahoo.com/teacher-fired-receiving-fertility-treatments-211311476--abc-news-topstories.html

I'm going to start by saying that the following entry is 100% my opinion on this article.

I think what the key issue of this article/situation should be has nothing to do with fertility treatments.  I believe the investigation needs to focus on whether her bosses gave her permission to do something and then later revoked that permission and fired her for it and whether that is legal/allowed.  It also needs to focus on the details of her contract and whether there were provisions in it for firing on moral/ethical grounds.

I personally believe that when you sign up to work for a private, religious school (of a religion you don't follow) you open yourself up to all kinds of rules.  They might think things and expect things of you that you don't agree with.  I would imagine they have every right to do that as a private organization (I'm not sure of what the exact law says, but I feel like I remember reading it's pretty lenient towards private organizations setting their own moral/ethical codes).  It is your responsibility as an employee to know what those rules are and decide if you are willing to follow them.


Unfortunately the sensationalist media is trying to blow this up by making it about a cause.  Whether that is her and her lawyer's strategy, I can't say.  But she will get more sympathy as this woman trying to have a baby, than as a woman who was fired for no reason.


As with all news reports, there is more to this story that we don't know.  Maybe I am naturally suspicious of people taking their cases to the media, maybe I am automatically biased towards schools.  I'm just not 100% ready to throw my support behind this woman as someone being judged and treated unfairly for infertility.

What I am not going to get into at all is the church's opinion that IVF is "an intrinsic evil".

Wednesday, April 25, 2012

Triangle Infertility Support Meetup

I've decided to go a step further promoting Infertility Awareness.  I've created a meetup group called the Triangle Infertility Support Meetup.  If you or someone you know is interested in meeting others who are going through similar experiences in the Triangle area, please consider joining our group (or pass this link on).

http://www.meetup.com/Triangle-Infertility-Support-Meetup/

Monday, April 23, 2012

Initial Fertility Specialist Appointment

Wow.  Joel and I just got back from the doctor.  There is a lot of information to process.  It's funny, I felt like we were on this magical mystery tour.  First we started in the waiting room (which appeared to be furnished by TJ Maxx) and then was moved to a couch in a hallway where they took my height, weight, and blood pressure.   From there we met with the doctor to discuss our situation.  After, she took us to the financial advisor to discuss insurance options, who then took us to the lab area for my blood work!  I also stopped by the bathroom, so I feel I really experienced the entire office.  Although we weren't in any of the..."sample collection rooms" as I have decided to call them, but that would have probably made me giggle.  (There was a guy there who was dropping off a "sample" and it was really funny/cute to watch him.  So of course that made me think of Joel and I had to grill him about his experience).


I think overall we had all of our questions answered and are in a really good place about deciding what to do next.  I feel like she gave us a lot of information and now we have an idea of the options ahead of us.  I think she did agree with us though that just doing another round of Clomid at the increased dosage was not the most ideal choice.  She said by the time you get to round 4 or 5, if you haven't already conceived, you should probably move on to other options.


She did say that she was 100% confident, we would get pregnant again.  Whether that is naturally or with help is the only unknown.  I wish I could share her optimism.  I believe her when she says that we will get pregnant again, the question is whether we make it full term.  I guess I've just seen too many women who go through rounds and rounds of treatments and still are not carrying a baby to term (if they get pregnant at all).  Let's just say I'm not completely convinced.


We have already done most of the testing we need to do, but today they did one more blood test that is checking my AMH (anti-mullerian hormone) levels.  This is basically a measure of my "egg reserve" or a measure of my remaining egg supply.  She assumes for me it will be fine because of my age, but she said there are some people for whom it is a problem.  I'm all for any kind of informational testing by the way.  I think the more information you have, the better equipped you are to resolve any problems.


The next step is going to be conducting a HSG (hysterosalpingogram).  This is a check to see if my fallopian tubes are open.  They inject a dye that will show up on an xray into my uterus and if it spills out of the end of the tubes, they know they are open.  Again, she's pretty sure they will be open (since I was pregnant once, one of my tubes is open), but still wants to confirm.  This I will wait to do until after my next period starts (unless it magically doesn't start because of this last round of Clomid).


At this point she brought up genetic testing.  She made the point that most people who get pregnant never get this information because they are not put in a situation where someone would tell them about it.  She gave us information regarding a test for Cystic Fibrosis (CF) and Spinal Muscular Atrophy (SMA), both fatal.  Carrying these genetic diseases is semi common in Caucasian people, about 1 in 30.  If both parents are a carrier there is a 1 in 4 chance of passing it on.  If we are tested, we are both carriers, and we go with IVF, then we have the option to biopsy the eggs and only implant healthy ones.


I'm not sure how I feel about all of this (yes, I know I just said I was all for informational testing).  On the one hand, yes, it would be nice to know.  On the other hand, what would we do with the information?  Do we take the risk and whatever happens, happens?  Could I live with myself knowing that I knew this was a chance but didn't do anything about it (if our child was born with the disease).   Are we willing to take such extreme medical action as biopsying the egg if we are carriers?  Actually, I'm sure we are willing, I think the better question is will we be ok with it?  I know I'm jumping the gun here a little, but I feel like I need to think about all of the options and outcomes to make a decision.  Joel and I are still talking about it, but I feel like we are leaning towards getting tested.


Finally we came to the heart of the matter.  If all the tests come back normal, what to do next.  She basically said we can move to the next step, which is IUI (intra-uterine insemination) or go straight past that to IVF (invitro fertilization).  There are a few considerations here including time, money, and multiples.  


The medication we would take that goes along with the IUI has a higher chance of giving multiples (ie-twins).  She basically said if we were completely against multiples, then we should skip this option.  We're not, so we eliminate that as a consideration.


Time becomes a factor when we think about how much time we want to spend working on getting pregnant.  We've already been at this for almost two years and she said there is nothing wrong with wanting to move straight to IVF (which she said has ~65% success rate).


Finally, money comes into play.  One round of IVF costs ~$15,000 and I believe the financial advisor said the IUI is ~$8500 (I have to confirm that with her).  Through my insurance I have no infertility treatment or medication coverage.  My insurance will cover tests and doctor visits, but no fertility procedures.  On Joel's insurance we have a one time use of $10,000 of infertility coverage (which includes medication).  So the question becomes do we want to use up some of the pool of money towards IUI or move straight to IVF.  IVF has a higher success rate but is also more medically invasive (I believe, I'm researching it now).


As of right now we have made no decisions.  Joel is leaning towards moving straight to IVF.  For him it's a numbers game.  He sees the 65% chance versus 15-20% of IUI.  For me, I can't explain why I'm hesitant to jump to IVF.  It seems so drastic.  I feel like we should try all of our options first but I don't have any good reason to believe that.  I don't know if it's the way I try to have everything so orderly and IUI is the next step, so that's what we have to do next.  I think I need to stop thinking about it in terms of steps and just see it as a variety of choices with no prerequisites.  I also need to do more research...

National Infertility Awareness Week

Well, the timing couldn't be better.

http://www.resolve.org/national-infertility-awareness-week/home-page.html

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Sunday, April 22, 2012

Moving On

After the really rough month of October, we moved forward with trying to get pregnant again.  My doctor told us to wait a couple of months so in Dec/Jan we got started.  After a few months of nothing we decided to try using a fertility monitor.  I did some research and went with the Clearblue Fertility Monitor. http://www.clearblueeasy.com/clearblue-easy-fertility-monitor.php

I would highly recommend this to anyone looking for a fertility monitor.  It was about $125 for the monitor and about $35/box of 30 test sticks.  I bought all of this on Amazon.  The monitor is easy to use and has a very clear, easy to understand display. 

Every day the monitor tells you what day of your cycle you are on and then tells you whether it needs a test done on that day.  I think it had me test everyday from day 10-25 or something like that (it's been awhile since we've used it).  First thing in the morning, you have to pee on the stick and then just click it into place on the monitor.  It then tells you the level of your luteinizing hormone (LH-which starts ovulation), either in 1, 2, or 3 bars.  Your 3 bar days are supposedly your peak fertility days and are days on which you should have sex. 

We used the monitor from about May-October with no results.  By then we started thinking about seeking medical advice. I already had my yearly exam scheduled in December, so I decided to bring it up then.  I think the hardest thing to hear is "you've been pregnant before, so we know it can happen".  That's all well and dandy, but doesn't make me feel better after months of nothing.

(Don't even get me started on what I hate hearing....that's a completely different entry)

At that appointment, we discussed the lack of progress and they had me come in for blood work.  The blood work determined that I was not ovulating (still trying to figure out if it's possible to get a positive reading on the fertility monitor but not actually ovulate).  As not so great as that was, it actually made me feel a little bit better.  I feel like I finally had some small reason for why things weren't working and a place to start from in trying to fix it.

Because I am not ovulating I was prescribed a medication called Clomid.  This is a medication that induces ovulation.  Fun little fact:  Clomid has been around since the 60s and originally they thought they might use it as a contraceptive since it has some anti-estrogen properties!  Clomid is taken for 5 days on days 5-10 of the menstrual cycle for no more than 6 cycles.  I started on the 50 mg dose.  On day 21 my doctor does blood work to see if I ovulated.  I have been on the 50 mg dose for 3 months (Jan, Feb, March).  Because there have been no results, they have increased me to 100mg.   Joel has also been in to be tested.  Other than one tiny dip, his results were all completely normal.

I've been a little frustrated about the decision to up the dose to 100 mg.  I'm not sure that this is the best route for us to go.  The Clomid caused me to ovulate on the 50 mg.  It seems to me if I am not getting pregnant, we need to start looking at other things.  In order to get a second opinion and learn a little bit more about our options, Joel and I have a consultation tomorrow at a fertility clinic.  I'm looking forward to the chance to get more information and possibly start moving on a more productive path!

That brings us to the present (yay for no more flashback stories).  I'll keep you all updated as things happen or as I feel the need to talk!

Acronyms

Wow!  So even reading for 20 minutes online about infertility and trying to conceive, one can get lost in a whole new world of acronyms.  In some cases there is a whole culture on the message boards discussing pregnancies, conception, and infertility.  I found this website with a very long list of acronyms and what they stand for.  Hope it helps!

http://www.freespermdonorregistry.com/index.php?option=com_content&view=article&id=10-fertility-acronyms&catid=10-information&Itemid=190

Dealing with loss

When we first started trying to get pregnant, I was confident that things would happen quickly. You hear all the time how careful you have to be to avoid unwanted pregnancy. What is the message we're supposed to take away from that?  I assumed it implied how easy it was to get pregnant.  Add to that the fertility genes I had hoped to inherit from my mom and I knew it wouldn't take long for things to happen. In my infinite wisdom I started telling anyone and everyone that this would probably be my last year of teaching.

Soon something did happen. In October, 2010 my period was late. While I was on the pill, my period was regular, practically to the hour. Ever since I stopped taking it, however, it has become very irregular. So I wasn't sure exactly how late it was. We decided to take a test and it came back positive.  I remember being happy, but not surprised.  At the time I was still confident that getting pregnant would happen and so when it did, I was ready.

I called my doctor to schedule an appointment and of course rushed right to the bookstore to buy the classic What to Expect When You're Expecting.  I remember reading through those first few chapters, trying to guess which developmental picture was the closest to what my baby looked like.  At no point in those first couple days did I even think about the possibility of losing it.  Then I started reading about chemical pregnancies.  I think it was then that I started to get a bad feeling.  I don't profess to be psychic or even claim I sense things before they happen.  I just remember having a really bad feeling for a couple days.

Chemical pregnancies occur when the egg is fertilized, but the egg never fully implants into the uterus.  The only way you would even know if they happen is if (like us) you took an early home pregnancy test, got a positive and then a few days to a week later get your period and/or a second pregnancy test with a negative reading.  According to the information I've found, these are actually quite common with sources saying anywhere from 50-70% of pregnancies end in miscarriage (many of those with the woman not even knowing she was pregnant, just having a slightly late period).

Anyways, I had scheduled a doctor's appointment to confirm the pregnancy.  The morning of the appointment I started cramping and spotting.  Normally I do not cramp during my period, so this was unusual.  In the car on my way to the doctor, the cramping was pretty strong and this is when that bad feeling came back.  I'm pretty sure I knew what was coming.

Between this visit and the follow up a few days later, the doctor did a couple of blood tests to compare hormone levels and internal ultrasounds to confirm, but it was determined that I had miscarried.  After that first appointment where we had pretty strong suspicions about the loss, it took everything I had not to cry in that doctor's office.  I did not want them to see me crying over what could hardly be called a pregnancy.  

I'm sure I was no more than a couple weeks in (because of my irregular cycles, I couldn't estimate when that period should have come), but it didn't seem to matter.  I grieved.  I felt guilty about grieving.  I mean, who was I to mourn the loss of two week pregnancy when there are women out there who have lost babies after hearing their heartbeat or giving them a name?  Even today, I still feel a little guilty.

One of the hardest parts about all of it was having to tell my parents.  I wasn't worried that they would be disappointed, I think I just didn't want to admit my embarrassment at having told them so early.  I have, harshly, learned the lesson to keep any pregnancy secret for the first couple months.

Looking back, one of the things I remember the most is how supportive Joel was.  I understand now that it was a loss for him as well, but in the middle of it, all I could see it as was something happening to me.  He has since repeatedly been there for me as we have faced the repeated arrival of my unwanted period.  In some ways our difficulties conceiving have convinced me that much more of what a wonderful father Joel will be.






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Initial musings

Well this is the first entry in my blog describing the process of trying to pregnant (I guess technically the second entry since I accidentally deleted the first one). I'm sure there are a million other blogs out there from people who are going through similar situations, but I feel like I want to tell my story. I hope it might help someone, though even if it doesn't it makes me feel a little better. I also threatened my hordes of friends and family that I would start a twitter account just to keep them updated after every doctor's appointment and blood test.

(On a side note, I feel very Doogie Howser-ish right now. Between the internal monologue going through my head, the clicking of the keys, and watching the words appear on the screen it is all very 80s sitcom)

I should probably start by describing what is going to be in this blog. This blog is all about the experiences we are going through trying to get pregnant. I'm going to be talking about my period, ovulation, and many of the private details about my body and the *ahem* activities needed to conceive. In other words, now is your chance to get out!  For the most part, this will be a place for my personal thoughts and ramblings and possibly a place for people to share their feelings/experiences.  However, I also hope to provide resources and information that I've found interesting/helpful.

To introduce myself, my name is Katie and I am 30 years old. I am originally from Michigan. I moved here in the summer of 2006 and have taught 5th grade for 6 years. I met my husband in April of 2007 and we married in May of 2009. We started trying to conceive in July of 2010 when I stopped taking birth control pills.  Currently we are at the very beginning of the infertility spectrum.  I'm not sure how far we'll need to go, but I'll describe it as we move through each step.