Processing Time

 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 at a roundtable and then follow up with me in clinic in a month. She also made them take me off the "low sodium" diet so I would actually eat the food. It took three days before I could get my lead fixed. She stopped by each day and kept the inpatient team straight. She even shared with the fellow something that I try to keep getting across to doctors, family, etc..... Processing Time.

I think this is important for every patient, but extra important for adults who had chronic problems as kids. We spent the first part of our lives, not having any control. We never got any processing time, time to decide what we wanted or how we felt about anything. Now, we need the processing time. We need to process how we feel, what our goals are, and what we now know about our condition to make decisions that are in our best interests. We differ from adults who are diagnoses in that people who aren't diagnosed until adulthood tend to trust the doctors and go with the flow because everything sounds life threatening and emergent...but we've lived this life for years...we are tired of the restrictions value quality of life as well as quantity of life.

So parents, doctors, patients....give yourself processing time. Time alone to think about your feelings, goals, priorities and do your own research. Write down your questions and concerns. Take time to set down with everyone involved in making the decisions and go through your list. Get real answers and then make your decision. Processing time is not 15 minutes....processing time can be days. Obviously, there will be certain circumstances where that kind of time is not possible...but you will know, you will feel that in your soul. No decision that could change the quality or length of your life should be rushed or railroaded by anyone.