About Me (In My Own Words)
I might be Adam’s longest running fan? My son had OHS at age 5 (2003) to remove a sub -aortic membrane at Children’s Hospital of Philadelphia by Dr. Thomas Spray (now retired). I know exactly what some of you say when you find the right surgeon – you just know. Dr. Spray couldn’t fix all the leakage so he has lived with AR all his life. We have always known he would need AVR at some point. At 10, he started Losartan and that freaked me out! This clear signal of a progressive disease hit me like a brick! I found heartvalvesurgery.com, ordered Adam’s book, did a lot of research. I remember Adam sharing a bit about young people feeling invincible and not taking medication – and when I was at my wits end with my son, I thought back to “ok, he’s not the only one!”… and years went on. Each year, his cardiologist made him take a stress test and said, “I’d prefer you play baseball, but if you must, go ahead and play ice hockey.” He played through college and still plays on a men’s team.
He is now 26. The time has come. He goes to his own cardiologist appointments so I am no longer charting Z-scores and debating the scale of mild to moderate regurgitation but hearing “surgeon” is now my most major “freak out “moment. He asked me to go with him to the surgeon his cardiologist recommended. Oh my! They were selling the OnX mechanical valve hard, used the myth “Ross just sets up a two valve problem”, talked about all the dangers of multiple surgeries and to say they didn’t listen to him about his lifestyle is an understatement. (He travels internationally more than 50% of the time for a job he LOVES!) His hesitation with Coumadin was met with “just ask your employer if they’ll let you travel when you’re on Coumadin” -- like it was no big deal.
He went into the appointment saying no Coumadin, no way…He left with the statement “I’ll just get the mechanical valve and be done with it. At least I’ll never have to go through this again” and it was obvious he was defeated. My heart ached but I was thinking “OK, this isn’t going to be as easy as I thought. Time to get back into it." Luckily, he had a primary care visit the following week and his doc urged him to get other opinions. I’ve never met that PCP but I truly believe some divine power put him in our lives. I thought, “Adam can’t still be at it? After all this time?” And sure enough, there was heartvalvesurgery.com!!!!!! I actually looked back in the earliest pages of Adam’s blog and it was around the “Forrest Gump” post that I remember joining. 2008! Of course, I’d prefer not to be here, but I can’t tell you how helpful and comforting it is! I apologize to Robyn – I didn’t remember that Adam got married back then. And now he has a beautiful, amazing son Ethan! With research, I keep coming up with questions – and the community keeps answering. What comes after Ross? Who is the leader in Ross procedure? New technologies like AVNEO Ozaki procedure. Multiple re-do surgeries are possible. Heavy doses of hope! And we are pursuing two additional opinions so far! Thank you to all of you for catching us on the free fall after that original surgeon appointment, you don’t know how much you mean to us.
More Info About Me & My Heart
More About Me
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I am from:
Langhorne, PA
