CF and Infertility After Pregnancy
*Trigger warning: This article topic involves pregnancy, infertility, and mildly graphic descriptions of cystic fibrosis-related medical issues including hemoptysis.
My pregnancy with my daughter was one of the hardest things I’ve ever gone through. During that time I became increasingly sick. Fighting infection after infection, coughing up blood, vomiting multiple times a day, and needing nearly half-a-dozen PICC lines placed in a span of 6 months.
I was determined to not admit to myself or anyone else how difficult it was on my health, both physically and mentally. Yet, six months after I gave birth I began discussing with my care team what another pregnancy would look like. Asking questions about what I could do differently, if I was healthy enough, or when they would “okay” me to have another child.
Thankfully, despite all of the challenges that my pregnancy brought, my lung function remained stable enough for my doctor to agree that when I was ready to try for another baby, and I was medically cleared to do so. I reminded him of the situation of my many PICC lines and the toll they took on my veins and on my arms (where the lines were located). Though I was not a typical candidate for a port-a-cath (I had only needed IV antibiotics once in my entire life before my pregnancy), he sent orders for me to get a port placed in preparation for my next pregnancy.
Pregnancy risks with cystic fibrosis
Throughout the next year and a half, however, I became increasingly ill. I required IV antibiotics every 3 months like clockwork. My weight dwindled into the double digits. Though my husband and I were trying for another baby, our family plans were put on hold almost every other month while I needed to take medications to treat infections that were too risky for conception or pregnancy.
I attempted everything I could to stay healthy enough for another pregnancy, but my body didn’t entertain it. A few months before my daughter turned 1 year old, I started a modulator therapy called Symdeko that I had pushed off starting in hopes of breastfeeding my daughter and having another baby. Within a matter of a few short days, I had weaned my daughter from breastfeeding, started the new medication, and once again put our plans of growing our family on hold.
Though I wished it would, Symdeko didn’t seem to improve my health much, if at all. My frequent infections continued and still, my weight maintained an unhealthy low. This resulted in unpredictable and missed periods for months on end.
Encountering more complications
Finally, mid-summer in 2019, my health hit a long stretch of much-needed stability. I had spent the fourth of July weekend in the hospital and the heavy dose of multiple IV antibiotics seemed to help fight the infection and set me up well for the remaining summer. Again, we resumed trying for another baby for the next three months with no luck. Though my health was the best it had been in ages, I was not able to become pregnant.
In October, I woke up early in the morning before my husband went to work. I sat up in our bed to talk about our upcoming week and what sounded good for dinner: the normal routine of a normal morning. Then, all of a sudden, I tasted blood. I thought I had a bloody nose, but when I cleared my throat, the blood spilled from my mouth onto our bed. I have never before seen so much blood from my lungs.
He immediately called our neighbors to stay with our sleeping daughter and drove me to the emergency room. I was so heartbroken. No one wants to be sick, or wake up coughing up blood, or spend days in the hospital, but more than anything, I was so very sad to put our family planning on pause once more. We spend a year an a half hoping for another baby, and each delay took the wind out of me and made me feel like our hopes were for nothing.
Could Trikafta be the key?
While in the hospital, I received some of the most bitter-sweet, life-changing, and timely news that I could imagine. A new treatment for cystic fibrosis, Trikafta, was approved by the FDA. Though I was elated by this, I also knew that it came with a difficult choice because there are currently no safety studies regarding the use of Trikafta in pregnancy. My husband and I had come to the conclusion that if I started taking Trikafta, I would not come off of it, even for pregnancy. I had to ask myself, do I start this drug that has no safety data for use in pregnancy, or do I forgo starting the medication and keep trying to grow our family?
I imagined my daughter, Lively, seeing me too weak to get on the floor to play with her or carry her up the stairs. I imagined her watching me cough up blood, being hooked up to oxygen in the hospital, or having to leave her crying while I was being rushed to the emergency room. The choice became clear. I would start Trikafta and put our family planning on a long, perhaps permanent, hold.
Putting pregnancy on hold
This was a heavy decision and an exhausting season for me. In the weeks leading up to receiving the medication, I experienced many emotions and anxiety over what this meant for our family. I had seen my health rise and fall so much, I knew that I couldn’t choose to endure it again. I believed that being healthy and present for my family outweighed my desire to bear another child. My plans to grow my family via pregnancy are on hold indefinitely, but I am happy to say that I have dedicated much of my time to increasing awareness of the need for risk and safety data on taking Trikafta during pregnancy.
My husband and I are, more or less, taking a “year off” of making long-term plans for our family. I am responding better than I ever hoped to Trikafta, and feel healthier than I have in years. I am refocusing my sight on enjoying this new life, living in the moment, and making memories with my loved ones. I expect these uncertain times in our lives, in our family, and in our world, to be ones that we look back on years from now as a season of growth. An uncomfortable change that will make us stronger and better in the long run. Things have not gone as planned--far from the plan, actually--but we are excited and hopeful for our future as a family of three.
Have you or your loved one with cystic fibrosis struggled with pregnancy risks? Do you think Trikafta will help? Share your thoughts and experiences in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?