The Internet Taught Me About Infertility in CF; It Wasn’t a Doctor

Darcy and I really appreciate all the kind comments and messages we have received after sharing one half of the CF IVF journey on the blog. As promised, Darcy will soon take to the blog to talk about everything she had to go through leading up to the process, during, and now after.

People seem to be interested in understanding when I found out about infertility in CF. It’s an important topic, especially since it seems (on the surface, at least) like it’s not a complication that we would all associate with the classical definition of CF – aggressive respiratory disease.

My one all-encompassing thought on this: Do not assume your kids – especially if they are teenagers – don’t know about CF related infertility.

I can’t pinpoint the moment I learned about the likelihood that I was missing my vas deferens because it was sort of an unremarkable situation. I learned from the Internet.

As a freshman in high school, I was handed a .edu email address, which gave me access to Facebook for the first time. If you can remember – or have seen The Social Network – a .edu email address was the easiest way to access the new website. As soon as I was on Facebook, I quickly joined a CF group. I was growing, curious and suddenly feeling the power of my Internet independence.

I was suddenly thrust into the world of lung transplants, bronchoscopies, Whipple surgeries, and, of course, infertility when the topics streamed across the message boards.

I can’t remember a sense of panic when I searched each of the new terms one by one, though I do remember feeling terrified after a search for “bronchoscopy” yielded quite the diagram and accompanying picture. As it would turn out, I would experience my first bronchoscopy a few years later.

My initial thoughts around infertility were mild at best. I think as a freshman in high school, the idea of fathering a child seems like such a distant possibility. The one concern I remember having, however, was that there appeared to be some confusion between infertility and sterility. When men are sterile, it implies that they cannot father biological children because of sperm production issues (or other physiological problems). Infertility is in a completely different category.

Interpreting comments on the Internet is never an easy task, but when people on message boards are mistaking infertility for sterility and vice versa I was stuck in a level of confusion that, at the time, I couldn’t Google search may way out of. Like most high school kids, I kept my mouth shut and my feelings to myself.

Looking back, I think the confusion between the two was probably a collision between an older generation of people with CF and a younger up and coming one. The pervasive lack of information about IVF as an option for people with cystic fibrosis (especially back then) likely led to some men thinking they could not father children, and thus making statements like it was impossible to do so. Of course, we know that was wrong, but people tend to speak in certainties online.

I’ve since come to the conclusion that unmoderated (or loosely moderated) groups on Facebook are usually a net negative. Disinformation is a huge problem in them. I’ve actually deleted my Facebook page, and only maintain a following page for the blog.

It wasn’t until a year and a half later between my sophomore and junior year of high school that a doctor brought up CF infertility for the first time. I was dealing with a stubborn infection that summer (surprise!) and my parents, frustrated on my behalf, sought a second opinion from a different CF clinic. The doctor there did a full work up with me, made a few antibiotic recommendations, but quickly realized that I probably wasn’t as well versed with classic CF facts as I probably should have been at that age (little did he know I was Google searching my ass off).

He presented infertility to me in CF as a fact. Although the complication does need to be confirmed with a semen analysis, infertility is present in at least 98% of men with CF. In any other line of thinking, we’d probably call that a fact. It wasn’t until I was 29 when I first did a semen analysis (right before we started IVF).

Importantly, infertility was presented to me as a challenge that could be overcome, which cleared up the sterile vs infertility dilemma. It was also my introduction to about a decade and a half worth of anxiety around “the big needle” for sperm extraction.

The conversation ended and the rest was left to my imagination.

It truly is a problem that there seems to be so much anxiety around having these conversation with growing boys with CF. The truth is that as soon as kids learn how to use search engines, which seems to be happening at younger and younger ages, kids are becoming privy to very real-world information. I was shocked by how many commenters seemed either not to know about infertility in CF or struggled with knowing the best way to tell their kids. I thought my generation of CF guys had it bad. I didn’t know the problem still persisted. This is the kind of thing the CF medical establishment needs to work to remedy with community members in a big way.