A little about my childhood…

Living On Oxygen for Life

I was born as the middle child of two sisters. Both are healthy.. thank goodness! Growing up, I was restricted from certain gym class activities; things like running, jump roping, or anything that made me breathe hard from exerting myself too much. What was so great was that my family, especially my sisters never treated me like I was a fragile flower. In a way, that made me stronger inside. Even though I was born with serious heart and breathing problems along with the scoliosis that had me wearing a Milwaukee brace, I was still a kid who rode a bike chasing after the ice cream man, played two years of girls’ league baseball (wasn’t very good), and I was even in a bowling league. I’m sure wasn’t suppose to do all that because of my health but my parents tried to let me experience life as close to normal as possible. There were times where I had to sit out from the fun because it was just too beyond my capability.

I was born and raised until I was 12 in Fort Wayne, IN. My cardiologist was in Indianapolis, IN and my Orthopedic doctor was in Minnesota. So there was some traveling for doctor appointments and surgeries. The doctors kept putting off my open-heart surgery to patch the Ventricle Septal Defect (the hole in the wall between the ventricle chambers of the heart) because my pulmonary function was so bad (remember my deformed ribs?). They didn’t think I’d make it through the surgery. By the time I was 10 years old, my step-father convinced the doctors to go ahead with the surgery. For some reason, I knew that I’d be okay but my step-father was worried. Before the surgery, he paid for us to take a ride in a helicopter (he was a helicopter pilot in the Vietnam war) and then he played catch (baseball) in the hospital courtyard with me. I knew what he was doing. I made him a bet before the surgery that I would be in the hospital a total of 7 days. Three days in ICU and four days in regular ward. I think I surprised the pastor of the hospital who came to pray with me before the surgery. I knew in my heart that I would be okay. If I won the bet, I would get a Hershey candy bar. Well, I won and I got my candy bar.

It wasn’t until high school that my lungs and heart started showing more signs of trouble. My CO2 was too high and my O2 was too low. I would get tired fast, forget what homework I had to do, I had headaches, and then I got pneumonia. That’s when the doctors figured out that I needed oxygen at night when I slept. It helped some but it didn’t prevent the occasional blackouts I started to have. Those were scary, especially when I started driving. Then depression hit me hard. I became suicidal but never acted on it. I thought about it all the time. I wanted to be normal but I wasn’t and I just had to come to terms with that. After the final car accident I had because I blacked out and totaled the car, my parents revoked my driving privileges for a year. I didn’t KNOW what the blackouts I was having were.

After graduating high school, I took a year off from everything and just lived with my parents and got my head on straight. I grew as a person without all the stress of school and no set requirements of daily activities besides living. Then I went out in the world, got a job and found the man who will always love me. I can say I’ve survived a lot in life. I feel as if I’m a survivor. In my opinion, to become a survivor is to live your life in a way that makes you happy even with setbacks in your life. You have to go out in world and find that thing that makes you happy as a person despite your challenges.

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12 thoughts on “A little about my childhood…

    • The hole in my heart when I was a child had something to do with having PH at that age but I still have PH. It makes me wonder why doctors are saying the life expectancy after diagnosis is only a few years unless treated. I didn’t get treatment for PH until year 2006 with Tracleer. It makes me wonder. You know?

      • The hole in my heart was not discovered and repaired until I was 45 and then they discovered I had PAH in 2009 and too was put on Tracleer. I assume your PAH is primary. Mine is secondary. I don’t go too much by statistics and doctor’s life expectancy status quo. As I asked a doctor who told me in 2007 that I would need a heart and lung transplant by 2012, “where did you see their expiration dates?”. 2013 and I still have my own organs functioning. I think so many doctors are just book knowledge and don’t look at each person as an individual case. You got something, so they just add you to that column with the other 500 people they are treating.

      • I whole heartily agree with you that to some doctors a patient isn’t unique. You have PH? You’re like all the other PHers. But for me, it’s a little more complicated than that because my rib age is so deformed. Ugh! I just get so frustrated. =o)

  1. I love reading your post. Your sheer resilience highlights the resilience and potential of people in general. There is so much in this latest post I admire, From the strength of your parents and their refusal to label you to your proof that doing things differently in education and elsewhere can have amazing results to your journey from depression to knowing how to be happy. That last one is a lesson every human being needs to learn. We all find happiness wnen we stop looking for it and recognise happiness in those things that float your boat.

    • Barry!!! Haven’t heard from in a while! I hope your friend is doing well on oxygen. You know, there must be a reason why I’ve lived this long. There must be purpose for me and I carry this belief in my heart wherever I am. Although, when times get rough, my husband is my rock.

      • My friend is doing well, thank you for all your advice. His world class stubbornness, which I have always loved as one of his best traits, has been serving him well. It translates into determination to keep on keeping on. He also has an amazing wife and how they both support and care for each other’s happiness and well being is wonderful to behold.

      • Hi Barry, ah… Stubbornness is something of a character trait of mine too. I truly agree with you about that stubbornness being something that can work for you.

        Thank you so much for the kind comments you wrote about my previous blog post. I think sometime in the future I’ll write more about what my childhood was like. But thank you for your kind words.

        Christine

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