One Thing I Wish I Knew Before My Double-Lung Transplant

When my mom used to ask me what I wanted to be when I grew up, I told her that I wanted to be a dad. The journey to fatherhood with cystic fibrosis is full of obstacles, but I would give anything to pass on the traits I've gained from living with this disease to a child of my own.

| 5 min read
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Kyle Cole
Kyle-Cole-Cousin-Emma-rectangle

“What do you want to be when you grow up?” Most responses from a 5-year-old would probably be “a fireman” or “a doctor.” But when my mom asked me this at that age, I responded with, “A dad.” 

From a very young age, I was told that having kids of my own would be nearly impossible. But even after I learned this information, I never thought that I may never have children. The alternative simply wasn't an option for me. Even at such a young age, I knew that someday I would have a child of my own to take fishing, bring to baseball games and guide through every aspect of life. 

Growing up with CF taught me to be resilient, strong-minded and positive and how to keep pushing through extremely hard times. These are the fundamental traits that were ingrained deep within me from years of dealing with this disease. I would give anything to pass these traits on to a child of my own. There isn't a greater blessing on earth than to have that opportunity, and I think I somehow realized that when my mom asked me that question at the age of 5.

Kyle-Cole-Cousin-Emma-rectangle
I love spending time with my cousin, Emma. Here, we’re enjoying a campfire outside.

 

I still do not have children. That is a very long journey that my wife and I are just now starting. There are so many obstacles to overcome and aspects to consider when it comes to deciding to have children. 

The biggest obstacle for us is that it can't be done naturally. CF causes infertility in almost 98 percent of males, which makes it nearly impossible to have children the natural way. But through the process of in-vitro fertilization (IVF), a man with CF still has a chance at having biological kids. 

IVF is a very lengthy and very expensive process. It is a decision that warrants a ton of thought and discussion with various doctors and fertility specialists. People ask me all the time, “What about adoption?” That is certainly something my wife and I have talked about and actually still want to do. However, the reason it is so important to me to have a biological child of my own is because I have always been told that it wouldn't happen. When you combine that with my passion for having kids since I was one myself, it makes for a recipe of determination, defying the odds and miracles. I hope that, in turn, will inspire others with or without the disease.

Despite these challenges, we are beyond excited to start this process. There have already been a few obstacles to overcome in these early stages. 

The biggest obstacle of them all came when I was told that the medications that I will be on (forever) after a double-lung transplant will prevent me from having kids. Some of the medications are dangerous for the baby. After speaking with my doctor, he told me that if I wanted, I could come off my medications for a short period of time to try to have kids. 

This is a very dangerous decision to make. Although there are other ways around this if you are informed about your options before a transplant, I didn't find out until it was too late. For example, if a male with CF has made the decision to have kids before a transplant, they can have their sperm frozen in order to have the procedure done at a later date. If I would have been aware of this, that is exactly what I would have done. I hope that in the future, this is a topic of discussion between a transplant recipient and their doctor, because it is an extremely important one. 

I can't go back in time and change anything, but I sincerely hope this will help change someone else's journey for the better. All I know right now is that I am excited to one day change dirty diapers, wake up in the middle of the night, read bedtime stories, scare the monsters away and kiss boo-boos. Every time we climb over another hurdle, we are one step closer to screaming with excitement in the delivery room.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Lung Transplantation | Fertility and Reproductive Health
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Diagnosed with cystic fibrosis at 3 months old, no one knew what the future held for Kyle, but he never let the disease define him. He is a husband, brother, son, musician, friend, colleague, entrepreneur and fighter, who just so happens to have a life-threatening illness.

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