I don’t want my condition to define me, but in a lot of ways it has made me the person I am today. I’m slowly starting to see things like I did as a kid. I should be proud – I am a survivor. I made it when others didn’t. Being a kid with any medical issue definitely changes your perspective. Fortunately my parents shielded me a lot from my medical realities which made it more difficult to grasp as an adult. I know my parents wanted me to have a normal childhood. Not one full of restrictions and precautions. I remember the doctor visits and needing to take it easy in gym class. I remember having to leave volleyball when it became too competitive. I hated my parents for that but now understand they were just trying to make sure I didn’t die. My parents didn’t want to scare me so they never mentioned my risks. When the doctor spoke I didn’t understand what he was saying and he always talked like I wasn’t in the room so I never fully grasped my reality.
Today I know at any time I could develop a leak in my heart or a clot. I could need surgery at any time. I could eventually need a heart pump or worst case a heart transplant. I don’t remember my four open heart surgeries or my blood transfusions. I think that’s comforting and also oddly unnerving. I’ve been through it before but I don’t remember it. I just keep hoping with all of our medical advances that if I keep ‘staying strong’ they will have an even more amazing medical advance to save me. I also think any person with or without a condition has chances of dying. People die every day in crazy random accidents. My point is that if you have a condition or medical issue it doesn’t necessarily mean you have any more of a chance dying than any other person out there. Statistically I’m wrong but logically it makes me feel better.
More than 123,000 people in the United States are currently on the waiting list for a lifesaving organ transplant. According to the American Transplant Foundation:
- Another name is added to the national transplant waiting list every 12 minutes.
- On average, 21 people die every day from the lack of available organs for transplant.
- Seven percent of people on the waiting list—more than 6,500 each year—die before they are able to receive a transplant.
- One deceased donor can save up to eight lives through organ donation and can save and enhance more than 100 lives through the lifesaving and healing gift of tissue donation.
How many of you have watched this video of a mother whose son died but chose organ donation for her son. He saved three lives and she got to hear her son’s heart in another little girl.
One thing I always wish people would remember: My heart condition cannot be seen but it still exists. This can be said really about any medical issue or mental health issue. I’m a big believer that you have no idea what other people are battling with physically or mentally each day so try and cut some slack. I used to hide my scar during teenage years and hated when I was asked about it. Now I love it. It’s amazing how many people out there are connected in some way to what you are going through.
When my daughter was born I got a little dose of my own medicine. I rode med flight with my daughter for a heart murmur but it just made me think about my parents. It’s funny how becoming a parent really brings you full circle of reflection on your own parents. You appreciate them more now because you have such a better understanding. My daughter is doing amazingly well but don’t think for a second I’m not going to remind her that I had to ride med flight with her.
Am I scared about my future, of course but I try to not let it get into my day to day thoughts. I really don’t think about it unless I need to like at a year checkup. I always know the day of those appointments I will be made to feel weak and vulnerable. Those days take a toll on me. I try not to think about the ‘what ifs’ of my heart condition and others like me who haven’t made it. It’s crazy how desperately you want to cling onto life when you have people looking up to you or needing you for support. I can’t imagine being any happier than I am right now – but I want to grow old with my husband. I want to see my daughter grow up and see who she will become. I want to continue to enjoy milestones, isn’t that all anyone wants?
Add your name to the organ donation list, there are more than 2,300 waiting in WI alone!
About Paige Knipfer
Paige grew up in Cottage Grove (outside of Madison) and attended Edgewood College, where she graduated with a BS in Political Science, as well as going on a program called Semester at Sea (traveling around the world on a ship while experiencing 14 countries). She is a training specialist for CUNA (Credit Union National Association) and has been for about 3 years now. She is a credit union advocate (along with adoption of course). While in high school, she met her amazing hubby, who she married in 2012. They currently reside in Brooklyn (outside of Oregon) WI with their rescued 9 year old black lab and 6 month old daughter. She also mentors a high school student and volunteers at many local places. She loves to travel, make jewelry, take photos, and read. She is a driven, sarcastic, old soul full of coffee, gin, and sushi.