Our Story: A Daughter’s Perspective

We are now six years out from my husband’s transplantation – and he is doing well. As you could tell from our story, the run up to -and recovery from – the surgery had an enormous impact on our family. The circumstances change but the impact is still felt long after the procedure.

The story has been told from my perspective, the wife of the recipient. While I have considered the affect the journey has had on our family. I can’t adequately express how this all felt to others. Fortunately, through a school assignment, I can now share the insights from one of our daughters. Here is the essay she wrote (without any guidance or help from her dad or mom).

Always There

Ever since I was young it was really hard. My father wasn’t always able to be there for me and my siblings. I would have games or plays or just everyday things that he would not be able to attend. I would see kids in my grade with their dads and I would get upset but I never really understood the intensity of his disease and why he couldn’t be there.

My dad has a genetic disease called Cystic Fibrosis or CF which is a disorder that affects the lungs, pancreas, and other organs. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and lungs, often resulting in respiratory infection. My dad would cough on and on and it would sound so painful and due to the disease he would cough up mucus that was green and thick like what you would blow out of your nose if you had a sinus infection, just imagine having that happen every day constantly for 45 years. I know I couldn’t do it.

Every time we would be walking somewhere even as simple as the grocery store he would be so out of breath so he just would decide not to go. I would always see him smiling, but never knew that under the smile was so much pain.

My dad would constantly be in the hospital and I would miss him a lot. The hospital became a normal place we would just go to like going to a friends house but instead of going to see a friend I was going to visit my sick dad. It was really fun to run around the hospital as a little kid and to go see my dad was always something I would look forward to doing but still the disconnect was there and I really didn’t realize that my dad didn’t enjoy the hospital as much as little 5 year old me did.

Later on in my life my dad got REALLY sick, sicker than he had ever been before and I thought he was going to die. He was staying in the hospital for sometimes a span of a month and was looking really rough. One day he had the opportunity to apply for a pair of new lungs through organ donation. This was a big deal because this would determine whether he would live or die. His current lungs were way too sick for him to even breathe; he was always wearing oxygen. My only hope was that they would find him lungs in time, I would pray and pray for him to get what he needed because all we could hope for was some type of miracle.

One morning I woke up and went along thinking it was gonna be a normal summer day but little did I know this day was a day that would change my life. I went down stairs and realized my parents were not there but my grandma was. My grandma then told me that in the middle of the night my parents got a call saying that my dad would be having his lung transplant and would have to drive to New York City. I was very upset because I never got to say goodbye and I was afraid I may never see him again. The percent of people who survive a lung transplant is 80 percent which still left that 20 percent of people who don’t make it and what if that was him?

A few months later I was able to go to New York City and see my Mom and Dad again. My mom looked tired and stressed and my dad looked very different. He looked thin and tired, the surgery was very hard on his body. I felt so sorry for him and so grateful that I could see him again and that that last time I had seen him was not the last. Each month he became stronger and stronger and then he was finally able to come home.

My dad had a lot of restrictions and it was very hard for us to get used to them. For example, if one of us kids were sick we could not be around him because of his suppressed immune system or he couldn’t eat a lot of the foods that my siblings and I could eat like fresh vegetables or fruit because they are not sufficiently clean. At Christmas time we are not allowed to get a Christmas tree because of the mold spores that could harm his lungs. This was hard for our family because we would always go out and get one as a family.

Soon those restrictions became more lax and today my Dad, because he cannot work, we see him a lot and he is always there. He can come to more of my games and plays and things that he could not attend before, with an exception of some things that he cannot do because of the restrictions like being in a room with a lot of people.

Now we still have to go to New York City for a lot for doctor visits, x rays and bronchoscopies. But I’ve learned to love going there and now I want to become a Doctor working to help people just like my dad who were never able to see their families but can because of organ donation. My dad has been so strong and is now 6 years out of his surgery when most people said he would never live to age 20. My dad is my hero and even though he could not be there sometimes he has made up for that by being there for me now and fighting through the tough and pain filled times. I give him so much credit for not giving up and for being persistent to get better for my family and so that my sister, brothers and I could have a father who loves us and who would be there for us until it’s really his time to go.