Stacy Danko with her daughters.

It’s hard to believe that 40 years of my life have already passed.  Spending these 40 years with CF has certainly had its ups and downs. Being one of four children, three of which were born with CF, has allowed me to see it all. I lost my older sister to CF, at the age of 8. I was only six months old. My oldest brother, who is now 45 years old, underwent a double-lung transplant five years ago and is doing well. My other older brother, who is 43 years old was spared the disease, but is a known carrier. My parents were divorced when I was three years old, and life was very difficult for my mother. As one knows, CF is a very time-consuming and demanding disease.

Being at all different from your peers at a young age is difficult. Every child wants to be accepted by his or her peers and stand out as little as possible. Fortunately, my mother never dwelled on CF, or treated my siblings or me differently. It may have been a coping mechanism for the loss of my sister, but it allowed me to grow up feeling as though I was no different than any other child. I did get more attention when it came to eating, exercising, or dealing with the heat, but since the rest of my life was so normal, I paid little attention to peoples' concerns. I was allowed to play sports, go on overnights, and go away to college. 

The greatest thing about my childhood was being a poster child at age 5 with my brother. My friends thought that it was neat that I was on TV and in the newspaper. The experience allowed me to turn something bad into something good. It also allowed me to deal with strangers, and not to be ashamed of having CF. The cough is enough to make anyone stare and wonder, but I’d always say, “I’m okay. I have a lung disease that makes me cough.”

People, I found, were more than understanding. I never had to wonder what they thought when they walked away. I still find myself telling strangers about CF all of the time, to decrease any fears about germs, especially since the SARS scare a few years ago. “I’m not contagious,” I say. “I have cystic fibrosis, which is a lung disease. I know I sound terrible.” I have always preferred that people know the truth in order to decrease any fears they may have. I often ride the elevator at work and find that this is when my body most wants to cough!

There are a few things that I would love to share about being a teenager with CF.  Maintain strong friendships. Your friends will be your “crutch” during difficult times.  You need their support. Don’t be afraid to get them involved in CF. It makes your friends feel like they are helping.

Secondly, eat lots of food! You can not take in enough calories as a teenager. You will need the energy to grow and do all of the things that a healthy teenager does.

Lastly, get more than enough sleep! If you are out late at night, please nap before you go and sleep in the next day. College is great, in that you can schedule your own classes. But take care of yourself. You only have yourself to hurt.

It seems that life, as an adult is easier than the teenage years. Although the responsibilities increase, the physical demands decrease. Your body has finished growing and doesn’t fight you as much for energy. You are also able to make all of your own decisions. I am not sure this is a good or a bad thing! But you are in control of your life and your time, so use it wisely. Take time for your self---there’s no going back.

I have been married for 15 years, and I have three healthy, natural born children. My son Paul is 14, Molly is 10 and Bridget is 7. They are all carriers of the CF gene, but they have no medical problems to speak of. They are the joy of my life. The three pregnancies were quite easy and uneventful. I actually felt better pregnant than I have ever felt. Caring for them on a day-to-day basis is quite demanding. It is more than a full-time job. There is no time for rest, or to worry about things. 

Having a parent with CF is very stressful for children. They are constantly reminded of your illness by your coughing, medications, hospitalizations and treatments. Other children are aware of your disease, too. Please be sure that your doctor supports your decision to have children before doing so. If your lung function is lower than recommended, please think hard before bringing a child into this world. There is nothing harder than losing a parent at a young age. It is difficult at any age, but this is a tough world and children need as much stability as possible. 

I never cared much about dying before, but since the birth of my first child the thought of death terrifies me. I couldn’t leave my children. I love them so much and want to provide for them and guide them until they are off on their own. At that time I will be able to relax and take what comes. I can’t explain how much leaving my children, or their worrying about losing me, hurts. Please don’t burden yourself or your children if you feel that your life will be cut short at a young age. The decision to have children affects many lives.

Many people ask me why I had more than one child. I knew that I was physically able to carry more children, and that my overall health was quite good. I never wanted to leave an only child. If something was to happen to me, I wanted my children to have siblings to grow old with.

At age 41, I work a full-time job and am the primary caregiver for my three children. I do my best to share my love of life with everyone I know, and teach my children to appreciate all that they have. Because of my CF, the little things in life don’t bother me, and my appreciation for everything good is magnified. I am open with my children and everyone that I love, and I work hard to keep as much worry as possible out of my loved ones lives. It is often, if not always, difficult to find the time to do my treatments. I am often so tired that I choose to go to bed rather than stay awake to do a treatment. My children are always after me to take care of myself. I live for them, so I do my best to comply. I often involve them in my treatments by having them do CPT while I use my nebulizer. We often do this while watching TV, so I look at it as quiet time spent together at the end of a long day.

I have been a registered nurse for 19 years, with most of them at Johns Hopkins. This has been very rewarding, but nursing is very demanding with the shortage of nurses and “swing shifts.” I now do risk management for the State of Maryland. I spend a majority of my time training employees in accident prevention, injury reporting, CPR and Bloodborne/Airborne Pathogens. My overall goal is to decrease Workmans’ Compensation claims and costs to the State.

My supervisor is the most understanding and caring person in the world. He allows me to work from home whenever necessary. I have been provided with the proper equipment so that I can continue to work, even when I am in the hospital. My coworkers are my greatest support system, and I love them all for their unending concern and support. My work keeps me going mentally. It is my outlet.