My year to year living with TOF was pretty calm. I had doctor appointments for my heart yearly. One of the things that I clearly remember is having to sit on a table for 5- 10 minutes for an EKG. These days that test is much faster. As a 8 year old kid though I hated it. I hated having to just lay there. I also hated going through having an echo. That was another of the just lay there kinda tests. Even today though that is still a long test. I have caught myself many times falling asleep just laying there.
When I was 7 I had my valve replaced. I do remember some of the time spent in the hospital. It was over Christmas vacation. One of my favorite things I remember was ripping up paper with my room mate to throw over the nurses on New Years. I also remember that I didn't even stay awake for New Years.
When my valve was replaced my Dad was told that it would need to be replaced in 7- 10 years. My valve ended up lasting much longer than was expected.
Most of my childhood was lived without medical limits. I was allowed to do what I could without being told not to do this or that. The biggest issues I had to deal with was protecting my heart from infection. The biggest health concern was strep throat. It was an infection that I got several times a year. I was one infection away from having my tonsils removed at one point. When my sister would get a strep throat they often would put me on antibiotics as well.
I had a cardiac catheterization when I was a freshman in high school. At that point they simply put a balloon into my valve and opened it up a little. There were no concerns about needing surgery and I continued on with my life.
At 18 I met the love of my life and shortly after meeting we got married. After getting married my thought begun to think of motherhood. While I did not get pregnant right away there were changes made in how I would be followed from a cardiac stand point. My case was transferred from Children's Memorial in Chicago to Northwestern Memorial. There I was followed by a dr who also specialized in cardiac issues in pregnant women.
My first child was born in 1995. My pregnancy was pretty uneventful until the end. It was at the end that I developed high blood pressure. My son was born at 38 weeks with no complications.
Shortly after my son was born I started experiencing shortness of breath. It was determined that the shortness was being caused my narrowing in my pulmonary arteries. About 7 months after my oldest was born I underwent another catheterization where they placed stents in my lungs to open them up.
Ok this is where I will stop for now. I will try to get the next blog up soon.