"My pressures are still high, and I doubt that they'll ever get lower, but I don't worry about that. As long as I feel well I'm going to live as much as I can"
I was diagnosed with primary pulmonary hypertension (PPH) in September 1998. I had just turned 17 a couple of months before, was in my senior year of high school, and making plans to join the Navy. I started showing symptoms when I was 13 (of course I didn't know it). I noticed that I was getting short of breath a lot, but I was at that age where I'd rather be on the phone with my friends instead of outside running around, so I just thought, "well, I’ve been getting lazy. I'm a little out of shape." I paid no attention to it.
When I was 15 I had surgery (not PPH related) and when I recovered I realized that my shortness of breath had gotten so bad that I couldn't even walk up a flight of stairs. Before that surgery I was able to walk up stairs slowly, afterwards not at all. After that the shortness of breath just got worse.
May 1998 is when I started getting chest pains. Again, I brushed it off as nothing. September 24, 1998, I collapsed while eating dinner. That was almost 12 1/2 years ago. My doctor gave me until I was 21 to live. I'm now 29. My treatment started with Flolan and coumadin, and then Tracleer. I was switched to Remodulin in 2005 and discontinued the Tracleer since it wasn't working. I started taking Revatio as recently as 2007. Best drug ever! I started noticing improvements right away. My health has gone up, and it's gone down. Right now I'm at the healthiest that I've been in years. I went a whole year without going to the ER for PPH related issues! And this past summer I rode a bike! I hadn't ridden a bike in over 10 years, and now I go bike riding when I can!
My pressures are still high, and I doubt that they'll ever get lower, but I don't worry about that. As long as I feel well I'm going to live as much as I can. I have a good support system in my family. My mom and my two brothers (I'm the oldest) are the best, but they do tend to be a little overprotective. I'm also married to a very wonderful man. He's been with me through everything. He takes care of me in every way that he can, even to the point of carrying me up a hill just because I want to sit there. What makes him wonderful, though, is how he treats me. He takes care of me, but he doesn't act as if I'm going to break the minute he touches me. He lets me do what I want as long as I don't overdo it. We go bike riding, we go on little hikes, we play catch, and we ride rollercoasters. We also wrestle a lot. Sometimes he lets me win, sometimes I win by cheating. Hey, if I have to be sick, I might as well use it to my advantage!
We've been married for 7 years, and recently we've approached the subject of children. I've had a tubal ligation, so our only options are surrogacy or adoption. As of right now we're considering surrogacy. Although I want a child, I'm feeling guilty at the thought of bringing a child into this world. Is it okay for me to have a child knowing that I might not live long enough to see him or her grow up? Is it right for me to put a young child through the trauma of losing a parent? I'm not sure what I'm going to do yet (I'm open to advice), but I know my biological clock is ticking. I'm sick, and it sucks. Life is hard. But I wouldn't change it for the world. My husband, my mom, and my brothers make life worth living. My life is wonderful. I know that my treatment helps me, but I know that I'm alive by the Grace of God.