This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!
I do not have CF , but I am the stepfather of a daughter with CF. She wouldn’t use that term since I am the only Dad she knows. Living with a child with CF is a constant mental struggle. There are so many great days opposed to bad days that your mind at times fails to have the ability to settle itself. I have not been in Sklar’s life in its entirety. Her mother went through the back to back hospital visits and the stress of finding out about her illness in the beginning. But I have been here enough years to watch her go from a small struggling CFer to the amazing little girl she is today. I am absolutely in awe of lack of fear for death she has. Whatever it is she has the spirit high enough to lift a whole house. We thought as we watched her grow up over the years that she would eventually do well enough not to have the constant supervision and care. We couldn’t have dreamt in our imaginations just how well she would be doing. It has literally been years since we had a hospital stay. And her lungs are improving. We give a lot of credit to her current condition in our change in lifestyle. We moved from the city, near Flint, Michigan, to up north rural in the woods living. Her spirit, her physical health, her attitude all changed in such a way that we could never change it back. It has been an amazing journey. Times are difficult being the stepparent , but only because of how I feel about her bio dad not caring. It’s a hard struggle with CF , but its worth every second. Summer 2015 family went to Give Kids The World in Orlando and had the times of our lives !!! Thanks GKTW
How CF Has Affected My Life and Family
Cystic Fibrosis is a disease that affects 30,000 people in the United States. On paper, it affects the respiratory, digestive, and reproductive systems. In reality, not only does it affect physical health, but it also affects socialization, mental health, and relationships. Sometimes trying to balance good health and living life means making difficult choices.
Because of my disease, I have learned perseverance. The fact that I have CF has no effect on my achievement. I am an eagle scout, an accomplished musician, and an honor student. These have not come without challenges, such as getting school work done in the hospital, or being so sick I can not practice my trumpet, but I have learned that if I really want to do something, I can find a way to do it. I look at obstacles as challenges as opposed to deterrents. I have learned that the only way to fail is to quit.
My disease also takes its toll on my family. We have learned lessons in sacrifice and flexibility. I am one of four children, two of which have CF. When my brother or I are in the hospital, we have to give up one parent to stay at the hospital and the other parent takes care of the other three. When we have family outings, we have to consider our daily treatments and exposure to germs. We have to get creative with managing treatments and our activities.
The lessons I have learned from Cystic Fibrosis are invaluable. Given the option to have never had the disease, I would probably keep things as they are. I enjoy my life, and I would not want to change a thing, because my life is special and unique to me.
My son was very sick, on and off for the past 3 years. Nolan had 2 sinus surgeries (2008, 2009). He would get better and then within a couple of months he’d get sick again. He would get sick so quickly, and lose weight really fast when he was sick. At birth he was 9lbs, 10oz and very healthy. He had lots of ear infections, and many cases of pneumonia (but not any different than any of my friends’ kids.) He never had digestive problems as an infant or child, but did experience asthma as a baby. Eventually he out grew it, at about age 10.
When he was 15 or 16 years old, the asthma came back, and he started getting what we thought were really bad allergies/sinus trouble. And, to make matters worse in middle school he started having digestive problems.
We took dairy out of his diet and it helped some, but I spent years taking different foods out of his diet trying to figure out the problem. After the 8th grade, he didn’t get any taller and had lots of trouble keeping weight on.
The spring of his sophomore year he got a bad cold and couldn’t shake it. He also had a cough and missed about a week of school. We finally took him to the doctor where he started antibiotics. They didn’t help much, and before we knew it, he had lost 30 pounds. He ached all over his body, had a horrible taste in his mouth and his temp was 104. In addition he was sweating profusely. At night I was getting up 2 and 3 times to change all of his bedding because of night sweats.
At this point the doctors really thought he had lymphoma. They ran every test you can imagine and finally because of the bad taste in his mouth they decided he must have a really bad sinus infection. They did surgery and he slowly improved. He missed that entire
tri-mester of school. He seemed to improve, but still had digestive problems and sinus issues. Then last year (2010), his junior year the same thing happened again. Bad taste, fever, night sweats…so the doctors did another sinus surgery and once again he got better (each time with steroids, antibiotics, etc.) His senior year he did pretty well. He lifted weights all summer and ate 6 meals a day trying to gain muscle. He succeeded in gaining muscle but could never keep up with his peers. My husband is very muscular, along with his family and it just didn’t make sense that Nolan had such a hard time gaining and keeping weight on.
During football season he lost all the weight had had gained over the summer. He got sick a couple of times but nothing serious. In November as basketball season started, he just wasn’t feeling right and I could sense that he was feeling depressed. My husband and I tried so hard to get him to eat and he never had an appetite because he would just feel bloated during and after eating and suffered with diarrhea. Around the end of November, beginning of December I picked up my Costco Connection magazine and I’m sure you know what I am about to say.
I saw the article about the Portraits of CF calendars and The Bonnell Foundation. I read the article about your girls. I physically got the chills up and down my entire body. I had spent hours researching and trying to figure out what was wrong with my son and even though I have known several people in my lifetime with CF, I didn’t know CF affected the sinuses. As soon as I read it, I just knew. I immediately went to the computer and started reading articles on the symptoms of CF. I learned about the digestion, sinus, asthma, poor growth, trouble gaining weight. I just couldn’t believe it. I told my husband about it and a few nights later we mentioned cystic fibrosis to our son. Nolan was 18 then, and I just felt like I shouldn’t push anything. I decided to leave it alone until he mentioned it. I really wanted to get him tested, but I knew that it needed to be ok with him.
In the middle of January, he got sick again, same thing: night sweats, fever, bad taste, sinus pressure, we went to the doctor and they hooked him up to an IV in the office because he had lost 8 pounds in just 2 days. We sat there for 4 hours and I slipped out of the room and found the doctor and asked him if it would be crazy to test Nolan for CF. He just looked at me and said, “no it wouldn’t be crazy…it does kind of fit.”
So long story short, on February 9th, 2011 we found out that Nolan has Cystic Fibrosis. I don’t know if you believe in God or not…but we are Christians and I truly believe that God used your family to help us find an answer for our son. I have wanted to contact you and let you know how thankful we are for the article and finding an answer!
– Shelley, Nolan’s Mom
Share Your Story
Anytime is a great time to tell your CF story! We’re listening… change someone’s life with your story. Fill out the form to share your experience.