Cystic Fibrosis Journey
“My story starts at birth, but we will skip some of those details. After being fobbed off by my pediatrician for over a year, at 18-months old I was diagnosed with Cystic Fibrosis. This was in the early ’80s when not much was known about CF, and my projected life expectancy was in my early teens. Fast forward to 1997 when I underwent the removal of my gallbladder, spleen, and some of my intestine, as well as undergoing a 12+ hour liver and pancreas transplant (thanks to my incredible donor, Amanda, and her Mom, April).
Due to my pre-existing health conditions, we always knew conceiving would be a challenge, but I always believed if we had to go down the path of infertility, that IVF would work. Having children has always been a non-negotiable for me, we would just have to find a way.
In 2019 my husband and I met with a Reproductive Endocrinologist for the first time. We did all the basic tests they require: labs, semen analysis, genetic screenings, etc. I also had a vaginal ultrasound to rule out any visible endometrial issues. We were so excited to have the green light to move forward, being told we should have no issue with conceiving, other than the possibility of poor chromosomal eggs, due to my age at the time (37). With our news in hand, we excitedly started our journey with IUI (intrauterine insemination).
Loss And Grief
Our first IUI failed altogether. Our second round of IUI resulted in a pregnancy. We were so ecstatic. Unfortunately, the same week we had our first positive pregnancy test we also had received the devastating news that my brother (Ron) had been killed while on his way to work. As a result of the trauma from that loss, we lost our first pregnancy (September 2020).
Losing my brother has changed every aspect of my life, but it reaffirmed my desire to want to have children. My grief has been very challenging on this journey too because you are constantly told ‘stress will negatively affect your outcome,’ and I can’t control the stress that is in my life from my loss. It’s there, it’s always going to be there, and so I have had to work very hard to not allow it to consume me (which has been proven to be easier said than done most days).
In November 2020 we began monitoring for the 3rd round of IUI, and after running tests, we learned my grief had caused my body to stop ovulating altogether. I ended up being diagnosed with thyroid issues (Hashimoto and Elevated Prolactin). Who knew stress could completely destroy your body’s mechanics.
At this point, we transitioned from IUI to IVF. We looked in this direction to the bright promise of in vitro fertilization (IVF). We underwent one round of IVF and opted to do chromosomal testing to prevent the possibility of passing CF on to our children. We had 4 beautiful ‘normal’ embryos. Our first frozen embryo transfer resulted in an 8w2d fetal demise of our little girl (March 2021). We had a D and C a week later due to my body not realizing we had lost the baby and flew to Utah 3 days later, still miscarrying, to elope. In July we started the process of a second embryo transfer, which failed along with our third embryo transfer, and we were left scratching our heads.
Unforeseen Problems With IVF
What I didn’t know then was that it would become a frustrating, fruitless, and ridiculously expensive odyssey. One that would lead me to an RI who would ‘fire’ me for ‘philosophical differences,’ that would be when I questioned his ‘findings,’ had a second opinion, and found out he was taking advantage of me. What I didn’t know was that this industry is highly, highly profitable and it isn’t always filled with the most empathetic and trustworthy physicians. Sadly, at this stage, I am left feeling that some REs are here for profit over patient care. You have to be your own advocate.
It’s been two years of pumping my body full of every hormone you can imagine. One to make me ovulate, one to stop ovulating. Birth control pills to control your cycle, and then hormones to throw you into menopause. Estrogen pills, patches, vaginal suppositories, injections. Pick your poison. Progesterone in oil injections, endometrium suppositories. Lupron injections to prime. Gonal, Menopur, Ganirelix for egg retrievals.
I’ve spent over $100,000 without having the joy of a child. No photo in the fertility clinic of my baby smiling, being held by my RE. I walked away from my first round of IVF with a beaten heart and battered and bloated body, and hundreds of empty syringes in my biohazard sharps container. My blastocyst(s), that fuzzy blob on the screen would never blossom into a living, breathing baby.
Taking A Break From IVF
We’ve taken time off since then and did a lot of soul searching. We have since completed a foster program and made the biggest decision since beginning our journey yet. Due to my health history, and Covid, we decided at this time it is probably not in the cards for me to try to carry a pregnancy on my own, and we have transitioned to an Intended Parent/Gestational Carrier Journey. We received our clearance letter from our Attorney on February 18, 2022, and we have officially started to prepare for our next steps.
Next month (April 2022) we will move forward with our second and final egg retrieval, and in the coming months, we will be transferring into our gestational carrier for the very first time. She has been an absolute rockstar so far on this journey, and we are so grateful for her offering us this gift. It’s not something that we could afford otherwise, and that is something that is not lost on us. Our gestational carrier also suffers from unexplained infertility and after having her own children via IVF has graciously offered to try to help make our dreams come true, too. Superhero, I’m telling you!
Finding Support Groups
I don’t think I can tell this story without talking about the infertility community that I decided to immerse myself in after our 8w loss in March 2021. I had gone through our IUI’s, Egg Retrieval, and first embryo transfer very privately. I was scared of ‘saying out loud’ that we were suffering from infertility because then it would be true. What I have since learned is, I was creating an isolating journey for myself.
I felt like I was the only person who was going through infertility, on top of my CF, on top of my transplant, and on top of the grief I am living with now…and that is when I found my tribe of IVF warriors. Very early on someone messaged me and said: ‘Welcome to the worst club, with the best members,’ and it’s a sentiment I share now with new warriors. This club sucks, there are no two ways about it. People can peek in and see our letter boards, and our videos and think we glamorize it but it’s not glamorous. Nobody wants to be here, but here is where we have found ourselves and we are surrounded by people who understand us.
Who can empathize with us? Who can offer us input on our treatments because they’re going through the same treatment, or they have had an experience that may benefit us somehow and so we all network, and help each other, and support one and another…and that is something that you can’t find in every community. But, you can find it here; with these warriors. I am so grateful to them and their friendships.
This is a very emotionally, financially, and physically difficult journey. If I could give anyone on the outside looking in the advice of what not to do, it would be to not make suggestions on the steps you believe we should be taking. I can pretty much promise that any suggestion you make, we’ve already considered and if we wanted to go down a different path…it would only be at the suggestion of our physicians, and partner (unless this is a Single Parent Journey). And to anyone who finds themselves on this road, you are not alone. There is a tribe of women out here ready to support you, and to love on you, please find us!”
This story was submitted to Love What Matters by Kasey Rose Barger Koukos from Cocoa, Florida. Follow her journey on her Instagram and her GoFundMe. Be sure to subscribe to our free email newsletter for our best stories.
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