Friday, April 25, 2014

Guest Post: Kati's Story

***April 20-26, 2014 is National Infertility Awareness Week and I am taking part by sharing stories from women who have experienced infertility first hand. Did you know that 1 in 6 couples experience some form of infertility? Someone you know is probably struggling with infertility and you may or may not even know, since it is often a taboo subject. Help break the silence and raise awareness. For more information about NIAW, please click here. This post is the fifth in my 2014 Infertility series. To see more stories, scroll to the bottom of this page for links.***   

Our Infertility and Loss Journey - Kati & Jeff

My husband and I met and started dating in 2007.  Just eight short months after starting to date, we knew we were in love and started having discussions about our future together.  I asked him if he wanted to have kids – as I was 30 and he was 36 at that time.  And I knew if we were going to get married, I’d want my life partner to be on the same page as me.  We agreed that we both wanted kids, two of them, and we’d start trying as soon as we got married.  We moved in together and he proposed a month after that conversation.  

June 2009 we were married in a beautiful ceremony and fantastic reception.  After our honeymoon; I went off birth control, started charting my cycles and taking my basal body temperatures to learn as much as I could about when I was ovulating.  Our mothers and siblings all got pregnant within six months of trying for all of their children, so we expected to see two pink lines fairly soon.  I ovulated every cycle, we had good timing in my fertile window, and yet months came and went with no positive pregnancy test.

After nine months of trying, my OBGYN agreed to start preliminary testing until we reached the one-year mark and could refer us to a reproductive endocrinologist (RE).  I had an HSG that first month of testing -which is a test where dye is forced into your fallopian tubes to see if they are clear- which was fine.  The next month Jeff had a sperm analysis.  I remember the call from my doctor telling me that his count, motility, and morphology was all on the “low side” and that she could now immediately recommend us to an RE due to Male Factor Infertility (MFI). 

So after 11 months of trying we had a diagnosis of MFI, and headed to an RE for further testing on me.  We learned I also had an issue of Luteal Phase Defect (LPD), which was apparent from my short 26-day cycles and low progesterone after ovulation.  My RE explained that while we were dealing with two issues, they were both fairly minor and he felt the best plan of action was FSH drugs to strengthen my ovulation (thus strengthening my progesterone and luteal phase) combined with an IUI (Intra-uterine insemination) to get the best sperm past my cervix.  He told us that 80% of people will get pregnant within four cycles of this treatment.  He felt confident we would fall into that 80%. 

So Jeff started on a vitamin blend that increased his sperm count.  We decided to wait not only the three months for these vitamins to work, but also a few extra months to help pay for IUI because as it turned out our insurance pays for “diagnostic only” meaning just the tests to determine what is wrong.  All treatments moving forward were out of pocket.  We were not in the best financial position back then, so we actually waited nine months from diagnosis to first treatment (March 2011, then 21 months into TTC).  And I honestly thought with the increase in sperm, and taking meds for progesterone that maybe we would get pregnant on our own.  That first IUI I was on a drug called clomid and the entire cycle cost $900.  It didn’t work. 

We took two months off to save and regroup.  IUI #2, same plan, same result.  We then had to take eight months off treatment to afford more.  IUI#3.1 was canceled after spending all the money because we learned the day of, that Jeff’s severe allergic reaction that had landed him in the hospital three months prior, caused all his sperm to die.  It was so hard to be filled with hope that day only to hear we couldn’t even try.  However, it was also determined the drug clomid was making my uterine lining too thin (a common side effect) to continue with this treatment.  We needed to move on to injected drugs that unfortunately cost at least $1000 more per cycle.  IUI #3.2 three months later (now April 2012), his sperm count was back to his “normal” (still low but enough for IUI).  It was another cycle we didn’t get pregnant.  Our RE said he would try one more time before moving on to IVF as the recommended plan.  Again, we had to take a long break to afford treatment.

My first injects cycle (Jan. 2013), I got a positive pregnancy test at 13 days past IUI.  But I started spotting the next day.  My betas went from 41 to 23 to zero within a week of finding out I was pregnant.  It’s what is referred to as a “chemical pregnancy”…because while I was pregnant, I miscarried so soon that the only way to detect I was ever pregnant was in the chemical hormones that turn a test positive.  It was hard emotionally as we had worked so hard to finally say “we’re pregnant” only to lose it days later.  We had already told our parents and siblings the joyous news because they knew of our treatment plan.  Only to have to turn around days later and say it was over.  Everyone was so supportive.  The next month, our RE agreed that since we did hit the “80% of getting pregnant in four IUIs” that we could try one or two more times before IVF; if we wanted.  Because I felt we were so close to our dream, and I was going to be getting a small amount of infertility coverage from my company in April I wanted to use it for IVF if needed – but let’s try one more IUI.  April 2013 we did our last IUI out of pocket to get my new insurance deductible out of the way.  But I did have high hopes since I finally felt “I can get pregnant”.  But again, it ended with no pregnancy. 

At this point we had spent almost four years trying, spent over $7,000 on treatment, had six medicated cycles, five IUIs, and one loss.  And we finally had the money through insurance to afford IVF (We still had to pay over $3000 for our part).  Our IVF cycle was set for late Sept/early Oct.  While stimming, my progesterone got too high for a fresh transfer.  Again I felt devastated to hear I had to not only spend more money on yet another cycle (a frozen egg transfer aka FET) but that I then had to hope any of my retrieved eggs made it to the blast stage where they are able to freeze. 

Of eggs retrieved in IVF, many do not survive the five or six days of growing in a petri dish.  An average person, you’re lucky if 80% of the eggs retrieved are mature, then 70% of those fertilize, then 30% of those make it to blast stage.  So if you have 16 eggs retrieved – that means great results will be:  13 will be mature, 9 will fertilize, and maybe 2 or 3 will make it to blast to freeze.  I was 35 at the time, so I had decent numbers “for my age” but I had 13 retrieved, 11 mature, 7 fertilize.  And only one made it to freeze by day six.

We did our FET Nov. 15, 2013.  Six days later I got a positive pregnancy test.  Over the next several weeks I saw my baby grow.  I had weekly ultrasounds.  Saw the fetal pole at five weeks, saw the first heartbeat at six weeks, the baby starting to really take shape at seven weeks.  I had told all our family and close friends (as they all knew we were doing IVF).  It had finally happened!  I was pregnant!  And I started to believe this time was our time.  I started taking “bump” pictures, writing in a pregnancy journal I’d be able to share with our child.  Got a body pillow as a Christmas gift from Jeff. 

And then after eight weeks it happened.  We went in for our 8w3d ultrasound.  Two days after Christmas.  As soon as I saw my little baby, I said “You’re freaking me out.  I don’t see the little flicker of a heart beat.”  And my ultrasound tech said “I’m so sorry, neither do I.”  My baby had died. 

As a “missed miscarriage”, it means my body didn’t recognize my baby had died.  I was given the weekend to decide if I wanted to let things happen naturally, take a drug to assist the process, or have a surgery (D&C).  We chose to take the drug in order to avoid possible scarring from the surgery and to speed the process along.  Nothing, not a damn thing, EVER prepares you for the sheer pain of this loss.  Even my first loss couldn’t prepare me for this.  I will spare the details of my loss, but I will say it is the hardest thing I’ve ever survived.  And that’s all I can say.  I survived.  I took two weeks off work to physically and emotionally heal – but let’s all admit the death of a loved one takes a lot longer to heal, and do we really ever? 

I miscarried on New Years Day 2014.  I found out about our pregnancy around Thanksgiving.  I learned of my loss right after Christmas.  Will I forever associate these three holidays with my loss?  Probably.  In the past three and a half months, has there been a day when it hasn’t crossed my mind at least once?  Nope.  But I am able to find happiness in life again.  I am able to move forward.  So that’s what we’re doing.

We learned from testing that my baby was a healthy genetically normal boy.  We have also ruled out most all of the possible causes for my miscarriage.  Only one area of one test shows what might have been the cause.  Otherwise, there was no rhythm or reason for it.  So I have to move forward with faith that we are doing all we can to bring home our forever child. 

We can afford just one more try, this time completely out of pocket for fifteen grand.  So we are moving ahead with IVF#2 in late May/early June.  We will be adding Human Growth Hormone (HGH) to try and get better results during the egg retrieval and growth process; as it’s shown to improve results in older women.  And the only test that came back high, I have natural killer cells in one of the three areas they test for, so I will be adding an infusion prior to transfer and after positive tests to hopefully avoid another miscarriage. 

If after this summer we still do not have a child growing inside me – we will move on childfree.  If this five-year journey of infertility and loss has taught me anything it’s this:  I am stronger than I ever imagined.  My husband and I’s love for one another can get us through this.  The emotional journey is not really laid out here in detail, because well - I could write a whole book on that.  It’s a struggle that only those in it can fully understand.  But this is just a minor glimpse into what we’ve been through. 

I hope that after reading this; if you are dealing with infertility yourself, you feel a connection knowing all the ups and downs.  Support and knowing I’m not alone has meant so much.

And if you are looking in from the outside?  I hope this glimpse shows you there is a whole other world we IF’ers go through.  The physical aspect?  I’ve spent months popping pills, injecting drugs (sometimes up to three shots daily), had over 60 ultrasounds before, during and after these cycles.  When we reach the five-year mark this summer, we will have spent over $28,000.  I have cried harder than I ever thought possible.  I have dealt with pain both emotionally and physically that I would not wish on my worst enemy.  And yet everyday I walk past people on the street as if nothing has happened.  But during NIAW, I do what I can to help educate the world.  I hope you walk away a little more aware.     


2014 Infertility Series

Liz's Story
A's Story
Kate's Story
Lee's Story
Kati's Story

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