Cystic Fibrosis

Not much is known, or should I say, not many people know what Cystic Fibrosis is. Most of those that do know are those that have it, family and friends to those that have it, and the doctors that work to control and treat it. It can be very mild, or it can be extremely difficult. It depends on the person and the genes that they have. There are over 1700 known genetic mutations of the CFTR gene. CFTR is the missing protein in someone with Cystic Fibrosis. Every person that has Cystic Fibrosis, received a gene from both parents that are carriers. Carriers do not have Cystic Fibrosis, they just carry a single mutation gene. With two parents that are carriers, there is about a 25% chance that a child will be born with Cystic Fibrosis.

I am one of those 25% children.

No there has not been a cure yet, that I know of. There has been research and drug developments that help control the symptoms caused because of the mutation, but not yet a cure. Since I was born, there have been significant developments in treatments and lung transplants have made it so that when your current lungs can not function well, then you have a chance to extend your life through a transplant. Granted, its like trading one disease for another, but in my opinion, the transplant regime is easier to handle than the Cystic Fibrosis treatments.

Everyone with Cystic Fibrosis has a journey that they have been through or are going through. Nothing in this article is information that you cannot find about Cystic Fibrosis. It's just my experience with living with it.

I was born with a mild case. I wasn't diagnosed until I was about five years old. In the older days of medicine, a child with Cystic Fibrosis was unlikely to live past two years old. If they did, their life was still significantly shorter than others. Now there are tests to determine if you have Cystic Fibrosis. Ways to test if you are a carrier for a Cystic Fibrosis gene. The life span of someone with Cysitc Fibrosis has long been extended from then. Many can live past 60 years old now. Transplants have become a big part of that as well.

Cystic Fibrosis affected my lungs, sinuses, and my digestive system the most. I had to do all sorts of breathing treatments and take enzymes to help properly digest food for nutrients. I was thirteen and at the end of seventh grade before I had to be hospitalized for the first time and given IV antibiotics to fight off an infection within my lungs. Physical exertion became increasingly difficult the older I got and the more my lung functions dropped. Stairs were like my worst enemy at one point. Some times I would go a year, maybe two without the need for antibiotics, other times I needed them almost every other month. By 2019, my lungs were only functioning at about 20%. That's when I had a double lung transplant.

Take note, a transplant is not a cure. You are given new breath with a lung transplant but you have to be extra careful. More than you were before. Part of the treatments to prevent rejections will also lower your immune system. For people with Cystic Fibrosis, their immune system is already weak anyhow. But the immunosuppressants are to keep the body from rejecting the lungs. Although, eventually, the body will reject the transplanted lungs. The good news is that most people with Cystic Fibrosis may have their lungs longer than others. We understand a strict regime for taking medications. We grew up having to be responsible and disciplined to maintain our treatments. This is important after having a transplant.

Just because someone doesn't look like they have something wrong with them, as in it's not a physical disability like needing a wheelchair, doesn't mean someone with Cystic Fibrosis isn't limited in the same ways. If your lung functions are low, you may not be able to walk far without needing to catch your breath. Some may have to carry oxygen tanks. Some may look completely normal to everyone else if they see you walk from a handicap parking space to the door of the grocery store. It doesn't mean you don't have a disability as well. Now if you can avoid it, you should try to stay as active as possible. Try and make those longer walks. It helps in the long run. But do not be ashamed if you are considered disabled because of your Cystic Fibrosis.

Many people take life for granted. Many don't understand how wonderful it is to be able to breathe. They can try to imagine. But people like us, with Cystic Fibrosis, take every breath and are glad to be able to breathe, regardless of how difficult it might get over the years. I struggled. Someone else struggled. Maybe you're struggling. Be blessed with every breath.

In my experience, informing those that I meet about my having Cystic Fibrosis, and the things I go through. It helps build a community of supporters. They are a blessing to have, guaranteed. If you have Cystic Fibrosis, or know some that does, never be afraid to look for connections with others that have gone through it too. Your experiences could be different from someone else's, but there will be a mutual understanding or what it is like. If you have a family member or a friend, don't be afraid to ask questions. Hopefully everyone has at least one person that wants to be involved in everything in your life and your journey with Cystic Fibrosis.

My journey isn't over yet. I got a second chance to experience more than I could before. And if you get the chance, you should experience the world and everything in it.