Learning The Hard Way

CF patients fare quite well at accepting negativity. However, there are certain truths that are especially difficult to acknowledge. Infertility is one of these truths. Although men who have CF enjoy normal sex lives, they are almost always (99 per cent of the time) infertile due to an abnormality of the vas deferens. This daunting reality represents yet another hurdle that individuals living with Cystic Fibrosis are forced to overcome.

Unfortunately, most young men with CF move from childhood into adolescence without counseling regarding their almost certain infertility. This signifies a significant problem with CF patient care. One of the most staggering moments of my life occurred the day that my high school girlfriend confronted me about my fertility. It was the first time anyone had mentioned the notion to me. As a 16-year old male I literally had never been told that I would be unable to have children.

What angered me was not so much the idea of my infertility, but the idea that such an important issue had been effectively concealed by my family, my doctors, my nurses, and my counselors. Granted, the conversation would not have been an easy one to initiate; but nevertheless, I feel that CF patients should be informed of this harsh reality.

It was not until I transitioned from the pediatric clinic to the adult clinic that I was formally briefed regarding the issue. However, by that time I was nearly 19-years old. I had already been forced to deal with the issue on my own.

It is my opinion that the issue of infertility should be discussed with CF patients BEFORE they become sexually active. It is an issue that must be discussed frankly but sympathetically. Young male patients should also be informed that all other aspects of their sexual function are completely normal.

In fact, despite the fact that males with CF suffer from an abnormality of the vas deferens, they do produce sperm. It is, therefore, possible to aspirate sperm from the epididymis and use this for in-vitro fertilization. However, the technique is fairly limited; with a statistical success rate of only 20 to 30 per cent.

Unfortunately, the procedure is also complicated by the fact that CF is genetically transmitted. In other words, children parented by a father with CF will almost always end up suffering from the disease.

As medical science progresses new options are arising. However, the real problem lies in how young males come to learn about their infertility. It is my sincere hope that changes will be made to current practices that view infertility as an issue to be circumvented. As with every other area of the disease, we – as patients – can only begin coping after we accept the true nature of what it is that we are dealing with.