My Story

I was diagnosed with CF when I was two. My parents always kind of joke that they knew something was wrong because I was eating as much as my dad but losing weight. At age 2. :P After testing for various conditions, including Celiac’s disease, a sweat test finally proved that I had cystic fibrosis. My mom was pregnant with my sister at the time that I was diagnosed. CF is a genetic disease that is inherited when a person receives a recessive gene from each parent. When parents are both carriers, the chance that their child will have CF is 25%. So it is not incredibly common to have more than one child with CF. However, Laura was diagnosed with CF a few months after she was born. 

I am currently 32 and my sister is about to turn 30. I graduated from the University of Georgia with a degree in foreign language education. I’ve taught Spanish in high school and elementary school. I am married, and I have two little boys, Drew and James, ages 5 and 3. Laura is living in San Francisco. She got her doctorate degree studying microbiology at the University of San Francisco and is currently working on her post-doctorate degree at Stanford while also planning for her upcoming wedding in May.

I, on the outside, really lead a normal life. I’ve done many of the things most of you would wish for your own children to do in life. Graduate. Have a career. Get married. Start a family. I’ve even done things most of you probably wish to do yourselves- run a half marathon, and travel to foreign countries like China, India, Italy, Peru, Singapore…

But behind closed doors, things aren’t as “normal” as they appear.*MY* normal is hooking myself up to a vibrating vest every morning to help shake excess mucus out of my airways while doing my inhaled medicines using an air compressor and nebulizers. These medicines also help to clear my airways as well as kill bacteria that often get stuck in the lungs of people with CF.  This takes at least 45 minutes, usually an hour. But it’s my kids’ favorite time of the day because it’s when they get to watch TV. ;) MY normal is a large, divided medicine box at the breakfast table so I can grab my days’ worth of pills. MY normal is another handful of pills with every meal I eat. And every snack. These pills mostly include my enzymes that help my body to digest my food, but also include vitamins that my body otherwise has a hard time absorbing, as well as antibiotics. My normal is a constant lack of energy that I struggle to fight and yet my normal is pushing myself to stay as active as possible to keep my lungs healthy- walking, running, yoga… whatever it takes. My normal is refusing to share a drink or food with my children for fear that they’ve picked up a bug at school that I can’t afford to catch. My normal is putting my kids to bed, then, instead of sitting back to relax after the long day, it’s sitting down in my corner of the couch where my compressor, vest, and medicines are all set up for another round of treatments. My normal is a frequently messy house because of a lack of energy, and because the time I could spend tidying up, folding laundry, or washing dishes is spent, instead, doing medicine. Or worse, calling pharmacies or insurance companies. :P My normal is keeping a spreadsheet of my medicines and which pharmacies they come from because I can never seem to keep it straight. My normal is an occasional “tune up” doing IV antibiotics, either at home, or in the hospital. At one point in my life I despised these hospital tune ups. Now that I have kids, however, I kind of think they sound like a great vacation. ;)

As a mom, I get frustrated that my meds take time away from other things I could be doing with my boys and that I don’t have the kind of energy I’d like to have to do things with them. I get frustrated by my constantly messy house, even more so than most moms, I think, and by the fact that if we want to go anywhere before noon I have to get up super early to get medicine started before the boys wake up. I worry about what comes down the line for me. Will a lung transplant be in my future? I’ve never really doubted that I’ll be around to see my boys graduate and get married, but in the dark hours at night I sometimes wonder how much my body will allow me to enjoy those moments.

But even after all of that is said, I do have to point out that my experience with CF is quite different than many other people with CF, especially those my age. I’ve been especially lucky to be as healthy as I am. While some of that comes from the amount of effort I put into taking care of myself, some of it is just plain dumb luck. Many people with CF are in and out of the hospital multiple times a year. I, thankfully, haven’t had a hospital stay (outside of giving birth) since 2007. I HAVE had a few home IV tune ups in that time, in 2008, 2013, and 2014, but even going years between tune ups would be a dream for many. Weight gain is a constant struggle for many with CF which often leads to having a feeding tube put in. Many of us *wish* to struggle to gain weight, but in reality it’s quite a nightmare when the thought of food makes you nauseous and the act of chewing it makes you tired, but your body desperately needs the energy that food provides in order to fight the constant infections. There are a good number of women with CF who couldn’t even consider getting pregnant because their body’s just wouldn’t be able to handle it. And there are people much younger than me that have undergone lung transplants just to breathe a few more years.

BUT life for people with CF has improved a LOT even just in my lifetime alone. When I was born my parents were told that the average life expectancy for someone with CF was about 16. That number has now increased to 37!! And, as you can see, I fully expect to surpass that. ;) There is so much hope because of new medications and treatments coming through the pipeline funded by the CF Foundation. People with CF are now living much longer and healthier lives. So much so that it’s really changing the face of the disease. Once, when I was at an allergist appointment for my son, who was two at the time, the nurse was going through his family medical history. When it came to me, I said that I have cystic fibrosis. The nurse looked at me and said, “you mean you’re a CF carrier.” I said, “nooooo…. I HAVE CF.” She seemed momentarily perplexed but then explained that when she went to nursing school, CF was considered a childhood disease. She didn’t realize people with CF could actually grow up and have children. I also had another doctor, a dermatologist, tell me “wow! You’re getting up there for having CF!” No worries. That was my first and last appointment with him. ;) But, the point is, even those in the medical profession aren’t all aware of the amazing leaps and bounds that have been made for people with CF.

And it is thanks to the CF Foundation that many of these advances have been made. CF effects approximately 30,000 people in the US, 70,000 worldwide. That’s actually not a huge number, which means, it can be hard to get pharmaceutical companies to fund research for CF. The CF Foundation has been a leader in raising money for those with CF and funding research for new treatments and trials. Many of the drugs I currently take, like Pulmozyme, that keep me healthy and active were drugs that came about because of the CF Foundation. My sister is currently on an amazing new drug called Orkambi that was just recently FDA approved and was one of the CF Foundation’s biggest accomplishments. It targets some of the underlying gene defects that cause the symptoms of CF and has been significantly increasing lung function for those who are on it. And I’m currently on trial for a similar drug that we’re hoping will have EVEN BETTER results than Orkambi.

I really don’t complain a lot. CF is all I’ve known and I’ve been healthy enough to maintain a very positive outlook on my life. But, if I had to complain about ONE thing it wouldn’t be about the medicines, the life expectancy, or the daily struggles, it would honestly be that I have to deal with pharmacies and insurance companies. That may sound silly, but many more tears have been shed over phone calls with insurance than have ever been shed over the fact that I have CF. It isn’t because insurance companies or pharmacies don’t try to be helpful, it’s just the nature of the system, so when I am prescribed a new drug, or when my husband’s company drops our insurance provider, I often find myself running loops trying to figure out how, when, or where to get my prescriptions filled. And there, yet again, the CF Foundation comes to the rescue with a new program called Compass that provides caseworkers to help patients manage the insurance, financial, legal, and even emotional concerns they may face. I have yet to use this new service, but am so happy to know I have it there for me when I need it. Which, I know I will.

Overall, I’m beyond lucky to have a super supportive family, especially my husband and my parents. I’m lucky to grow up in a time where all these advancements have made it possible for me to live as normal a life as possible. I do my best to give back as much as I can- I volunteer to participate in studies and drug trials, I try to raise awareness, and I lead a team and fundraise and walk in Great Strides every year. But there is only so much I can do ALONE. So I want to thank all of you for taking the time to read my story. And I especially want to thank you for your interest and participation in Great Strides. It is because of people like you, your time, your energy, your fundraising, and your donations, that the CF Foundation has been able to do so much for me, my family, and so many others living with CF.

Please consider joining my team or making a donation at http://fightcf.cff.org/goto/DianeFlood.

Thank you!