About

Thank you for coming to my blog! My name is Jordan and it’s nice to meet you! (:

Let me tell you a little bit about myself. I am 20 years old, a high school graduate, an amateur/wannabe photographer, an animal lover, a bookworm, a nerd, a cupcake maker (but not eater), a friend, a daughter, a sister. Oh, I also have CF.

CF stands for Cystic Fibrosis, a genetic disease affecting approximately 30,000 people in the United States. It causes thick, sticky mucous to accumulate on certain organs in the body, primarily those in the respiratory and gastrointestinal systems. The mucous in the lungs is a great place for bacteria to thrive. Infections are common and must be kept under control with antibiotics, both IV and oral. The mucous causes frequent coughing, which scars the lungs and causes lung function to decrease as time goes on. Mucous can also block the pancreas and prevent the release of enzymes that aid in the digestion of food. This can result in malnutrition and trouble maintaining weight. It is a life-threatening, chronic disease. The current life expectancy is in the mid-forties. That may not seem like much, but when I was a baby, they thought I wouldn’t make it to 18. Moral of the Story: Don’t pay attention to those things. 1) It will just freak you out/make you sad and 2) It will change as new treatments become available. The disease is not the same in every person and can vary from mild to severe. CF is caused by a genetic mutation and it is estimated that 1 in 31 adults are carriers of this mutated gene. When two carriers decide to make a baby (or accidentally make a baby, as in most cases 😉 ) there is a 25% chance that the child will have CF. My family doesn’t like to play by the rules of statistics: out of 3 children, 2 have CF (or 66% of us as compared to the 25%). I could totally go all nerd on you and explain that the 25% only applies when you take a large sample according the Law of Large Numbers (thanks Mrs. Donoghue!) and each child is an independent role of the dice so the genetic make-up of one child does not affect the genetic make-up of another, but I won’t. I’ll just say that having one child with CF is pretty hard, and having two can be even harder. It could be worse though. All three of us could have it, then it would be a party!

I was born two weeks late, via c-section. I was 10 lbs. 2 oz. Yeah. I’ll let that sink in.

So I was a big baby. It was a blessing in disguise though. As the days and weeks went on, I wasn’t gaining weight. For 6 months, no one knew what was wrong with me. I was just “failing to thrive”. Those were probably some of the 6 scariest months for my parents. However, having a diagnosis doesn’t mean your problems go away. CF doesn’t have a cure, although they are working towards one. I’ve had to manage CF my whole life. And although I always knew I had it, my parents made sure I was as normal as possible and never used CF as an excuse. It was instilled in me that I am not CF. It does not define who I am. I don’t think I fully realized how different my life was from everyone else until middle school, when all you want is to fit in and be “normal”. I think I reached a certain maturity where I realized that my life path would be distinctly different from my peers. Death was something that we all become aware of as we grow older. As a child, you never worry about your own death. You fear the death of your parents and grandparents, but never yourself. I think I became aware of my mortality around 8th grade. We (me and my little sister) were starting to be hospitalized more often. The doctors started mentioning lung transplants. At the time I just ignored them. It wasn’t relevant to me at that point in my life. I was 14 years old, focusing on high school and friends and deciding what I wanted to do with my life. It was just something that will have to be looked at farther down the road.

As high school went on, I noticed that my lung function was slowly decreasing. I was usually in the 40 percentile range, but now I was averaging in the 30s. I wasn’t able to participate in much exercise. I was coughing more. I started to research CF more, which was beneficial in many ways. But it also gave me access to information that a young adult with dreams and aspirations doesn’t want to see. I realized that CF made it hard to have children. If you do get pregnant, the pressure on the lungs can be detrimental to health. Then you have to worry about your child being born with CF. For me, this was heartbreaking. I had always known that I wanted children. That was the one thing in my life I knew for certain. I considered adoption, of course, and I’m not opposed to it, but knowing that you may never be able to have a child that is completely your own and grew inside of you can make you angry and sad and frustrated. That was just one example of the things I realized as I got older. I would just get so frustrated with my situation. I was terrified of dying before I could even live. Why couldn’t I have a normal life that follows the expected, traditional path?

Then the topic of lung transplant came up again about two years or so ago. With lung function in the 20s, I realized that I had to make this decision now. I was now “down the road”, at a fork. Lung transplant would mean a chance at disease-free lungs and a longer life. But it also has a ton of risks. My body could reject the lungs, I could get sick due to being on immunosuppressants, there could be complications during surgery. Recovery from the transplant is several months. I would have to put my life on hold while waiting for lungs. But without them, my life would be significantly shorter.

During a hospital stay in July 2013, my sister (she was 16 at the time) and I both decided that we wanted to go through with the transplant. I received my transplant on December 27, 2013 at Florida Hospital in Orlando. Logan was on the list at Mayo Clinic in Jacksonville and had her transplant on February 6, 2015.

I decided to create this blog for many reasons. The first is that I have a problem with bottling all my thoughts and emotions inside. Often I let these things build up and we all know that is not good. So this is kind of my way of letting it out. Secondly, I figure this is a good way for family and friends to stay updated with what’s going on in our lives. This way they can get a “behind-the-scenes” look at our lives and have up-to-date information without having to get it second-hand. Finally, it’s also a good way for me to connect with others in the CF community. Others in my situation may find it comforting to see they aren’t alone.

I hate naming things, but “With Every Breath” just kinda came to me. Breathing is a big part of CF (obviously), but it also had to be kinda catchy and artistic because, let’s face it, this is the internet and being creative is important. It also relates to my outlook on life. With every breath you take, you should make the most of life. Every breath should be meaningful, not wasted. You should laugh with every breath, love with every breath, live with every breath. With every breath that you take, you slowly find peace within yourself. I think that’s all we as humans can do. We have accept that life isn’t always what we think it should be. Once we reach that place, we can truly live happy lives. Until then, we just breathe.

For more information on Cystic Fibrosis, visit The Cystic Fibrosis Foundation’s website at www.cff.org (Their Frequently Asked Questions is pretty helpful!)