During my senior year of high school, I took an anatomy class to complete a credit for graduation. Later in the Spring we covered the respiratory system and the different types of respiratory diseases. Reading about CF, I thought that the symptoms sounded a lot like the ones my mom had for her bronchiectasis. Further, when we studied bronchiectasis, the symptoms sounded nothing like what my mom had. The only difference that I was taught, was that most people with CF die before the age of 30 and my mom was in her 50’s. About a month later my mom received her diagnosis of CF after a short hospital stay. I do have a better understanding of CF now than I did in high school, but some things are still a bit scary.
One of the most common questions I get asked now is “When did you first notice that your mom was sick?” and my answer has always been “I didn’t”. I’ve grown up with my mom always having nebulizers, taking cough medicines and walking a little slower than everyone else. All of that was normal, so to some extent I never really thought she was sick. I don’t know exactly at what age I asked my mom why she had all of these medicines or what her answer was. I imagine her response was that she needed all of these medicines to stay healthy. She always had a positive outlook and never complained about her sickness. Unlike most people with CF, my mom spent very little time in hospital. Actually, the first time she was in the hospital that I can remember, was during my senior year of high school. I was worried at first, mostly because my dad had left a very short cryptic message on my phone on their way to the hospital and didn’t explain what was going on. I soon learned that she was there because an antibioitc had to be administered with an IV. I was more worried when my parents mentioned that my mom would need a lung transplant. It came as a bit of a shock and at the time I didn’t really know much about organ transplantation at all. I had no idea how much preparation went into it or what the organ transplant list was. However, as the process unfolded, much of that fear left and I came to see that the transplant will be a really good thing. I found that the more that I knew, the more comfortable I felt about the process.
I actually enjoy being a part of everything. My mom calls me her “Captain O” because I help carry her portable oxygen tanks when we go out and I refill them. My dad and I both scream “Pillboxie!!!” when my mom’s alarm goes off telling her to start her medicines for the night. I try to go to all my mom’s transplant unit visits as well. At times they can be boring, especially when you are sitting in waiting rooms for long periods of time only to be moved into another room to sit and wait even more, but knowing exactly what is going to happen during the surgery and the aftercare makes me feel very hopeful and excited. I’m also extremely curious and want to know absolutely everything, even the gross stuff. I also think about the transplant not as a huge scary surgery, but just as another part of my mom’s treatment and that makes the transplant less of a HUGE SCARY THING and more manageable. The more I know, the better I feel. Honestly, the only time I’m ever uncomfortable is when others awkwardly try to say how sorry they feel for my mom and me. However, this is because most people don’t understand what CF is. Some people see her O2 canula and assume that she used to smoke so now her lungs are smoke and tar filled sacks. Once I explain what CF is and that she needs this transplant, the awkwardness usually goes away.
While I feel that my mom’s transplant is a good and hopeful step in treatment, I do understand how deadly CF is. However, I was most scared before my mom had her diagnosis and started treatment for CF. Not knowing what was actually wrong with her health was much scarier than finding out my mom has CF. The first step to getting past the initial fear is understanding and the second step is asking questions. Ask all the questions you can think of, even if they seem silly or dumb.
I used to be scared of the day that my mom gets “the call” but now, because I understand and know a lot more, I’m going to feel hopeful when it comes. It will be the first step to my mom’s new life.