After announcing our pregnancy, I have been flooded with questions about our journey. I have decided to blog about it in three parts. This is Part 2. Please check out Part 1 HERE.
The first step in
starting the IVF with PGD/PGS process during the summer of 2014 was blood work
to prove that I was indeed a carrier of ALD. This would establish “medical
necessity,” which is imperative for insurance coverage. Easy, right? HA! Before
completing the blood work, our genetic counselor preauthorized everything with insurance.
We were told everything would be covered so proceeded.
The first of probably 300 needles.
Months later, I
received a bill for close to $3,000 for the blood work. This would be my first
battle with insurance. I learned a lot from that experience that would prepare
me for the next several years. I started keeping detailed notes of everyone I
talked to, asking for their employee number and writing down every detail of
our conversations. I eventually won this battle, and with the confirmation of
being a carrier, we proceeded to the next step.
In 2015 we moved to
the DFW area and decided to get the ball rolling. We found a fertility
doctor and scheduled an appointment. We quickly found out that there are SO
many things that are required and must be done before starting IVF. It’s crazy!
As a teacher, y’all know that it’s really hard to miss work. We get 7 days off
a school year which includes sickness, vacation (HA!), doctor’s appointments,
everything. We decided that it would be easiest to plan to do IVF in the summer
when I could rest and make it to the millions of appointments without writing
sub plans or stressing over missing days of work. We planned to do our first
round of IVF in the summer of 2016 and did everything on our part to be ready
to go. Unfortunately, our doctor didn’t do the same. After talking to the
genetic testing company, they determined that we would need a probe to complete
the process. No one had told us anything about this. When I set up a phone call
with the genetic counselor from the company, she told me that they weren’t even
sure that creating a probe would be possible in our situation. Talk about
crushing! If it was even possible, it would take 8-12 weeks to complete and we
couldn’t start IVF until then. So basically there was no way that we would be
able to do it that summer like we had planned. Of course, we were really
disappointed, but we had no other choice than to wait.
Since Tyler and I had
no children together, the geneticists would have to look at our DNA and create
a probe of what a healthy child between us would look like. This would provide
something to compare our real embryos to. Ideally, they needed DNA samples from
me, Tyler, my mom and my dad. We did the best we could without having DNA from
my dad. Tyler and I sent in more blood work, and my mom mailed in a spit
sample. Then we waited to hear if they could make it happen…
Finally, at the
beginning of that August I received an email letting me know that they were
able to create the DNA probe that was needed. We could start the IVF process,
but they would have to have at least 5 embryos. Whew! But school would be
starting back in a few weeks so it wasn’t the right time to start IVF.
I was so upset about
the situation that we decided it was time to change doctors and find someone
more experienced with our particular situation. After asking around, some
friends of ours recommended an IVF clinic that they had used and were
successful with. We scheduled a consult with the new clinic and doctor. It felt
perfect and it was. From there we made a game plan.
Between March and May
of 2017, we did everything necessary to be ready to start IVF that June. It
felt like a full-time job! There was blood work, sonograms, phone calls to
insurance, medicine trainings, ordering medicines, etc. We also met with
the Financial Coordinator at the clinic and got hit with the huge financial
costs associated with it all. Insurance wouldn’t touch it, so we would pretty
much be paying for everything out of pocket. I made it my mission to fight
insurance. These two two-inch binders document every phone call made and
correspondence received.
I actually had to
create a form to keep track of who I talked to about what. It was very eye-opening.
I spent hours and hours a week waiting on hold to talk to someone, anyone, that
might possibly be able to help me or even have a clue of what I was talking
about. I would often just burst into tears on the phone with whatever random insurance person I was explaining my story to for the thousandth time. A few times I was shown compassion and they would try to help, but in the end no one was able to make anything happen for me.
The stress of this
time was absolutely awful. It felt like
I was constantly defending the fact that we should get the chance to have a
healthy baby like most everyone else. Every denial letter I received in the
mail was like a kick in the stomach. It made me sick to think that an insurance
company would rather me knowingly have a child with ALD that would be destined
for death and cost them thousands and thousands of dollars, than to do the
right thing and prevent the disease in the first place. I had letters of medically necessity from my doctors, letters from The ALD Foundation that explained in detail the gruesome fate of ALD, but no one seemed to care.
We carried on with the
plan and I continued to fight insurance behind the scenes. On June 4, 2017 we
started the shots for our first IVF cycle. My nurse friend Kate came over to
help. The two shots had to be given in my stomach between 6 and 8 p.m. at
night. I would have to go to the doctor’s office at least every other day to
monitor levels and have a sonogram to check follicles. To put it simply, they
were trying to get my body to produce a lot of eggs for an egg retrieval.
The plan was originally for Tyler to give the injections to me, but I liked the
control of giving them to myself.
The whole experience was an emotional roller
coaster. Every time I went to the doctor, my follicle count and maturity would
change, plus hormone levels would change. I never really felt good about
everything because it could be different at the next appointment! We eventually
added in a third shot too.
After about two weeks, my body was ready for the egg
retrieval. Usually the doctor’s office will help mix this big shot that
triggers your body to release the eggs at the right time, but after looking at
my levels, they decided I needed to be triggered that night, before I would be
back at the office. Thankfully Kate came to the rescue again! She mixed and
gave me the shot at 7:30 on the dot that night. I cried and had a lot of anxiety
that had been building up to that moment, but I made it through.
The next day
was a rest day, but it was hard to rest because I was so uncomfortable. It felt
like there was an alien living in my stomach and the cramping was just
miserable.
The egg retrieval was
scheduled for June 15 at 7:30 a.m. It was the most nerve-wracking day of
my life. We had thousands and thousands of dollars invested into this, my body
had been preparing for weeks, I had endured multiple needles and painful
sonograms, and it all came down to this one procedure. It felt like my only chance
to be a mom. I had nightmares of there being no eggs to retrieve, or my body
releasing the eggs at the wrong time. I woke up at 4:30 that morning and felt
like my ovaries were going to explode. I cried most of the morning and felt
like I was going to throw up from the anxiety. After getting checked in at the
surgery center and getting called back, they struggled to get the IV in, which
only upset me more. Finally, it was go time. I was knocked out and taken back
for the egg retrieval.
Before I knew it, I
woke up crying (of course) and in a lot of pain. I cheered up, though, when the
doctor came in and let us know that they had retrieved 24 eggs. This was an amazing start! The eggs would be
fertilized and watched carefully by an embryologist over the next five
days. We were given a chart showing when to expect phone call updates and
I was sent home to rest. In traditional IVF, the embryos would be transferred
back into your body pretty quickly. However in our case, the embryos would
first have to be tested for ALD which could take weeks. So my body would come
off of all the medicine and then we would do FET or Frozen Embryo Transfer later.
We received calls on the given days and watched our numbers drop (which is to
be expected) every day. The recovery from the procedure was pretty miserable. I
was very swollen, sore, bruised and trying to drink tons of liquids to prevent
OHSS (Ovarian Hyperstimulation Syndrome).
Finally, we got the final number: 8. We
had 8 embryos to be biopsied and tested for ALD. Praise the Lord! The waiting
game would begin all over again as we waited to hear if we had any healthy
babies of those 8. We were given a pretty broad window of waiting time, so I
was shocked when we received a phone call with results less than 2 weeks later.
We decided to keep our results private, but were overjoyed to know that our
first round of IVF had been successful! Our clinic actually decided to feature
us in a story on their website.
It felt amazing to
know that ALD would end with us. I crossed a few more things off the to-do list
that year, including a mock transfer and a hysteroscopy that would need to be
done before the frozen embryo transfer. What we looked forward to the most was the
day that we could transfer one of our babies back into my body and hopefully
become parents!
Read Part 3 HERE.
Read Part 3 HERE.
