Lindsay's Story: Fertility, One of Those Things We Take For Granted

Tablet and Stethoscope Infertility
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Tablet and Stethoscope InfertilityI feel like fertility is one of those things we all take for granted. We just assume that when we are ready for children that we’ll go off birth control and get pregnant quickly. Unfortunately, our story was a bit more complicated than that.

My husband Travis and I were married in June 2010. We decided to spend a year renovating our house and just enjoying being married before we added children to the mix. I went off birth control in August of 2011 and we started trying to get pregnant.

At first it was fun. I charted my basal body temp, we had lots of sex, and every month I would eagerly await a positive pregnancy test. Months went by and nothing happened. It was around month 9 that I started to worry that there was something wrong. I knew it could take a healthy couple under 35 up to a year to get pregnant, so we pushed forward and continued to try on our own for a few more months.

In August of 2012 I visited my OB/GYN for my annual exam and to ask about starting infertility testing. He ordered some blood work and scheduled me for an HSG to check to make sure my tubes were still open. He also gave my husband a script for a semen analysis. All of our testing looked perfect, except my mid luteal phase progesterone levels were a little low. We also found out that we are completely out of pocket for infertility testing and treatment. My doctor assured me that we could easily get pregnant with clomid and IUI (intrauterine insemination). I did one cycle of clomid and IUI with my OB. Despite having a good looking follicle, the cycle failed.

After that cycle I decided to look for a Reproductive Endocrinologist. My OB prescribed unmonitored clomid, which I wasn’t comfortable with. I wanted a doctor that specialized in treating infertility. We had consults with 2 different REs and decided to move forward with additional testing and treatment with the second one. In January of 2013 we resumed testing and found out that in addition to my low progesterone, I also had hostile cervical mucus and was a carrier for cystic fibrosis. Luckily Travis wasn’t a carrier for CF and IUI would help us get around the issues I had with my cervical mucus. Over the next few months we did 3 additional IUIs. The first was unmedicated and the next two were clomid (monitored) + hcg trigger + IUI cycles. All of these cycles failed as well.

In June of 2013 we had our IVF consult with the RE. The thought of moving on to IVF was both scary and exciting at the same time. We were given about a 15% chance of success for IUI, but IVF would give us a 50% chance. The tradeoff of course is price. While an IUI cycle costs $1000-$3000, the average cost of an IVF cycle is $15,000 including meds. We decided to refinance our house and use our equity to pay for our IVF cycle. While it was a large amount of money, we knew our baby would be worth every penny.

In August of 2013 we started our first IVF cycle. I think the scariest part of the cycle was the unknown. I would be giving myself multiple shots a day to force multiple follicles to grow and then go under anesthesia to have my eggs retrieved. The embryologist would inject one of Travis’s sperm into each mature eggs, hopefully fertilizing them. We would then wait to see how many fertilized and how many would grow to blastocyst, a ball of a few thousand cells that would hatch and hopefully implant into my uterine lining. Our cycle started off uneventful. I gave myself  

 

injections and went in for ultrasound monitoring, where we saw several follicles growing on my ovaries. After about a week of stimulation meds, we used an hcg trigger to finish maturing the eggs and I went in for my retrieval 2 days later. This is where our cycle took a turn for the worse. We only retrieved 6 eggs and only 5 were mature. They were able to fertilize 3 of them. I tried not to panic and prayed that 1 or 2 of my 3 embryos would make it. When we got our report on day 3 after retrieval, we found out all three were slow growing and poor quality. None of the 3 made it to blastocyst and we had to cancel our transfer. I think this might be one of the hardest things I have ever went through. I took all of the medications, went through the egg retrieval and still never had a chance at success.

We met with our doctor who said our terrible cycle was likely just a fluke, so we made plans to start our second round of IVF in October 2013. I would be on higher doses of stimulation meds to hopefully help my ovaries produce more eggs. I also did some immune testing and found out I had borderline high Natural Killer cells, which could attack an embryo. I would receive an infusion of intralipids to help treat the high natural killer cells. Our 2nd round of IVF went smoothly. They were able to retrieve 8 eggs and 7 were mature and 5 fertilized. On day 3 after retrieval, we had 2 or 3 embryos that were good-fair quality and the others were slow growing and poor quality. We anxiously awaited our blastocyst transfer on day 5. We found out on day 5 that we had one grade 1 (highest grade) early blast to transfer. This was a huge relief, I was so worried that we would end up with nothing to transfer again. Unfortunately they were unable to freeze any of our remaining embryos. After transfer I had to wait 8 days to have a blood test to find out if the transfer worked, of course I cheated and tested with a home test a few days early. To my surprise our lonely little blast had implanted and my home test was positive. My husband and I were on cloud nine. However, our happiness was short lived. My first beta hcg (blood test to measure pregnancy hormone) came back at 14.6, typically it would be 40-50 at that point. Since I had been getting positive tests for a few days, I knew this was likely not good. A second blood test a few days later confirmed my fears; my hcg had dropped to below 5 officially making this a chemical pregnancy (an early miscarriage before a pregnancy can be seen on an ultrasound).

Dealing with the chemical pregnancy was hard for me. This was the first time I ever saw a positive pregnancy test. It was hard for me deal with being so close to success and then having it ripped away. Looking back, I am pretty sure I dealt with undiagnosed depression and I wish I had sought the help of a professional to deal with my loss.

My doctor seemed torn with his recommendation on how we should proceed with treatment. At first he told us that we should start looking at other options (donor egg, donor sperm, embryo donation, or adoption). This was hard for me to deal with, as I really felt like we hadn’t given IVF a fair chance yet. He ended up talking with another RE and they came up with a plan for IVF #3. I would do much higher doses of meds and plan on genetic testing for the embryos we create. This would tell us if we had an embryo quality issue (at least from a chromosome standpoint). We decided on January 2014 for this IVF cycle. Things went well, we had 8 eggs retrieved and all were mature and fertilized. Unfortunately, most were again slow growing and poor quality by day 3. We were lucky to have 2 embryos make it to blast this cycle, we transferred 1 expanded

 

grade 1 and 1 grade 2 early blast. Despite transferring two embryos, the cycle failed.

After a 3rd failed IVF cycle, we decided to change courses with our treatment. We had our choices between donor eggs or donor embryos and Travis chose to try donor embryos. I consulted with an out of state clinic in late February (our local clinic doesn’t have a donor embryo program) and we had our embryos chosen and our transfer scheduled for early May. The clinic’s program was anonymous and had chosen a profile with 9 embryos (6 were frozen on day 2 and 3 were blastocysts). Our plan was to thaw the day 2 embryos and grow them to blastocyst. Hopefully we would have enough to transfer and we would be able to save our already frozen blasts to use in a later cycle, ideally for a sibling. When we got to our appointment the day of the transfer, the doctor had bad news. Out of our 6 embryos, 5 survived thawing, but only one had grown much and it was a morula (stage before blastocyst). We decided to thaw our blasts as well. Two out of the three blasts survived the thaw and we transferred both along with the morula. This clinic required waiting 12 days before having hcg blood work drawn. I impatiently tested at home every day starting at five days after our transfer. This cycle failed as well.

We decided that before we would try another cycle, we wanted to look further into immune testing. My local clinic did some basic testing for us, but we decided we wanted a full work up. I filled out paperwork and sent in my medical records to make a consult with a Reproductive Immunologist outside of Chicago. I wanted to know if there was more to my immune issues before we transferred any other embryos. We decided that if she were to find more issues, we would give IVF with my eggs one more shot, this time adding immune meds to my protocol. We also decided that we wanted to switch doctors. My RE was great, but I felt like he had already given up on me as a patient. We decided to switch to the RE who was the medical director at the clinic where my RE did his IVF cycle. I had seen her for cycle monitoring several times and she seemed much more open to new ideas and willing to work outside the box.

It takes several months to get in to see the RI in Chicago, so I used the summer to work on losing a little weight and trying to get healthier. One thing that they don’t tell you when you are starting fertility treatments is that it can take a major toll on your body. All of the extra hormones, steroids, and the stress cause many women to gain weight. My 135lb 5’3’’ body ballooned to 165lbs. I was able to drop about 20 of the pounds before my appointment with the RI in August.  

I feel like seeing the RI was a good choice for me, even though much of the infertility community isn’t on board with immune treatments yet. I was diagnosed with several more immune issues, a few clotting issues, and found out that the blood flow to my uterus is poor. The RI prescribed her own protocol to be added to my IVF protocol. The immune protocol included prednisone, IVIG infusions, lovenox, and baby aspirin.

Since we found out my immune issues were more significant than we first thought, we decided to try IVF one more time. In November 2014 I started IVF #4. Again the cycle started smoothly, we were able to retrieve 10 mature eggs, which is the most I have ever produced in an IVF cycle. Of the 10 eggs 7 fertilized normally. Unfortunately by day 3 I only had one embryo that was good  

 

quality and growing at a normal pace, the rest were either very slow growing or poor quality. I also found out before our retrieval that my lining was just too thin for transfer and we would have to do a freeze all cycle. I was really worried that we wouldn’t have any embryos make it to blastocyst and we would have nothing to freeze. I knew from the moment I got my day 3 report that I was done cycling with my eggs. I was tired of the rollercoaster of emotions that went with IVF and only getting a few (if any) embryos to transfer. By some miracle, we ended up freezing 2 grade 2 blastocysts on day 6.

We decided to do a FET (Frozen Embryo Transfer) in January 2015. Unfortunately we had to cancel the transfer because despite increasing my estrogen and taking several additional medications, my lining wouldn’t thicken to my clinic’s minimum level for transfer. We would have to try again another month. Our second attempt at a FET was in April 2015. Luckily this cycle my lining cooperated with the increase in estrogen and addition meds and we were able to transfer our 2 frozen embryos. Unfortunately the cycle failed.

While we waiting to do our second FET attempt in April, I was contacted by a woman looking to donate her remaining 7 blastocysts. After our terrible day 3 report from IVF #4 in November, I had posted in an Embryo Adoption/Donation group that I was looking for embryos since we were unable to make viable embryos using IVF with my own eggs. I was honest with the potential donor that we had 2 frozen embryos we still needed to transfer and that my transfer was still a few weeks away. She offered to wait to find out the results of my cycle before trying to find another donor. Of course our FET failed, so we decided to move forward with the private donation of her 7 blastocysts. All of her blastocysts were high quality and the timing was perfect. It was really hard to believe because it almost seemed too good to be true.

Some people are afraid to attempt a private match with embryo donation because they think the process is too daunting. Really the process was quite simple. Once we agreed on the match and worked out any details (mostly what happens to the embryos if we divorce or if one of us dies, what level of communication is expected between recipients and donors, what sort of fees would be reimbursed, and any other items important to the donor or recipient), I had a lawyer draw up the contract, which is a simple transfer of property. The donors had a lawyer review the contract to make sure everything was ok on their end. Then it is a matter of both of us signing and notarizing the contract to make it legally binding. Once the contract is notarized, I arranged shipping of the embryos and they were shipped along with the infectious disease blood work results from the donating couple. We took a few weeks to get to know each other, but once we started working on the contract, it only took a few weeks to finalize and get it signed and notarized. The embryos were officially ours and shipped to my clinic by the beginning of June 2015.

Our first FET cycle with our snowflakes (a nickname given to donated/adopted embryos) was August of 2015. I still struggled to get my lining thick enough, but it did make it above the minimum and we were ready to move ahead with the transfer. We decided to transfer 2 of the 7 embryos. When we arrived for the transfer we found out that our clinic thawed a straw of two embryos, but only 1 survived. They thawed a straw with a single embryo so that we would have  

 

2 to transfer. Since the blasts weren’t fully expanded, they couldn’t be graded (generally under the new grading system my clinic started using, blasts are given a letter grade for the inner cell mass and a letter grade for the trophectoderm. The inner cell mass is the part that will become the baby and the trophectorderm is the part that will make up the placenta. The best score is A and the lowest is C). We were very happy to have two blasts to transfer and had new hope that our cycle might actually work. Unfortunately, neither embryo implanted, resulting in another failed cycle.

After this most recent failed cycle, I met with my RE to discuss a change in protocol I wanted to try. Some women have a much easier time building a lining using either a natural cycle or a low stim cycle. She agreed that I could try a low stim cycle to see how I respond. I decided before we would transfer any of our 4 remaining embryos, I wanted to do a mock cycle to test the new protocol. We did the mock cycle in late September/early October of 2015. My lining looked perfect so we decided to move ahead with a FET cycle in November using this protocol.

In November 2015 we started our second FET with our donated embryos. In addition to the new stimulation protocol, I also had a much more aggressive immune protocol since we had also been struggling to keep my immune levels in the normal range during my FET cycles. I ended up on 30mg of prednisone and did 2 IVIG infusions before my transfer. We had to make a decision on what to do about the number of embryos to transfer. We had 4 remaining, but they were frozen 2 to a straw. If we decided to transfer 2 and we lost an embryo in the first straw, we might have to refreeze one of the embryos from the second straw because my clinic will only transfer up to two blastocysts. We ultimately decided to thaw one straw and transfer either one or two blastocysts depending on what survived the thawing process. We would only thaw the second straw if neither embryo from the first straw survived. This turned out to be the perfect plan for us. We did lose one of the embryos in the thaw, but the second embryo was a perfect fully hatched AA blastocyst. With a blastocyst of that quality, the success rate is often high enough that transferring a second embryo doesn’t increase your odds of success. Even my RE said she was happy to see our instructions for thawing once she saw the quality of the blast that survived.

After transferring our perfect blastocyst, we had the long 8 day wait for our beta hcg blood work (blood pregnancy test). Early in our infertility journey, I would get impatient and take home tests really early. After seeing so many negative tests, the appeal of testing early wasn’t there. I did decide to test the morning of our beta and much to my surprise my test was positive. My nurse called later in the afternoon to tell me that my first beta looked perfect at 39.6. My clinic continued to monitor my betas and provide me with weekly ultrasounds to monitor the baby’s growth, until I was released to my OB around 12 weeks.

I am currently almost 25 weeks pregnant with what I can only describe as our miracle baby girl. I still sometimes can’t believe after 3.5 years of infertility treatments that I am pregnant. My pregnancy hasn’t been perfect and I have had a few complications including a subchorionic hematoma that bled for about 7 weeks, being diagnosed with pregnancy induced hypertension, and being diagnosed with pregnancy induced hypothyroidism. The big issue we are fighting now  

 

is intrauterine growth restriction (IUGR), likely caused by poor blood flow to her umbilical artery. Baby girl is currently only measuring at the 7th percentile. My doctors (OB, RI, and now a MFM) have come up with some med changes that will hopefully keep her inside and growing for several more weeks. Even with the complications, I am so grateful to have the opportunity to experience pregnancy.

I think one surprising fact to most fertile people is that being pregnant doesn’t “cure” infertility, it only cures childlessness. I am and always will be infertile; it is part of who I am. This doesn’t always have to be a negative trait though. Infertility has made me a more empathetic person. I know what it is like to have pain that you hide from most of the world because they don’t understand it. Even if I don’t fully understand your struggles, I understand what it is like to struggle and because of this I am not as quick to judge. Infertility has also introduced me to a wonderful network of women, many of whom I consider close friends. While many of them have found success through either treatments or adoption, some are still fighting the infertility battle. For my friend and anyone else still pursuing treatments or adoption, I am rooting for you. For the women who decide to stop treatments and pursue a childfree life, my heart aches for you and I wish you peace as you walk your new path.

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