CHD All Grown UP

When I started this post, it was not suppose to be a memo to healthcare providers, but it ended up as one. If you are a patient, read and let me know if you agree with my experiences.  I have an bachelors in Sociology and worked in Mental Health for several years before moving on to the medical field and eventually education. I am now working on my Masters in Applied Behavioral Analysis. If there is one thing I have learned working with children and families in crisis, its that learning does not happen when in crisis....or just after crisis. Learning happens at the baseline. I really wish this was something that medical doctors were taught or understood. When you are giving someone news or a prognosis that causes them worry or stress, that is unfortunately not the best time to educate them on their condition. I'm not saying you should not give them some information and answer the questions, but the chances of them retaining the information goes down considerably.  If someone h...

 I went in for a "routine" heart cath this past Monday to measure the pressures on both sides of my heart. Normally, I would be released and follow up with my cardiologist later in the week. However, this time, one of my leads for my pacemaker was knocked loose and it would be at least  the next day before it could be addressed. This put me inpatient and on the inpatient teams rounds. Now, the pressures on one side of my heart aren't great, but they are stable from the last cath 3 years ago. However, the in patient team was thinking about immediate intervention. I remember, looking over to my husband and saying, "they can fix the lead, but they aren't opening me all the way up right now." Bless my regular cardiologist. I don't know if she has figured out CHD kids who are grown up or if she has just figured me out. She stopped by and set the inpatient team straight that I was stable, they were fixing my lead and sending me home. She would discuss my case ...

 I was born with CHD otherwise known as Childhood Heart Disease. Back when I was first diagnosed, it was co-arc of the aorta and sub aortic stenosis. I had my first heart cath at 6 weeks old and my first surgery at 2 years. I had several other procedures including 2 more heart surgeries and a "balloon" surgery by the time I was 13. At 14 I developed ventricular tachycardia. As an adult, they lumped my original heart problems together as Shones complex and I also developed heart block.  My goal here is to share my story, feelings and thoughts. I hope I can help give hope to a parent of a child with CHD, give a voice to teens who are transitioning to the adult world and give insight to some doctors who wonder why CHD kids don't just go with the flow when it comes to treatment in the adult world.