I wanted a crystal ball, a magic number, an expiration date. He didn’t give me any of those things.  I saw Dr. Jerry Estep this week.  He is the medical director of the heart transplant program at Methodist Hospital. No, I’m not getting a heart transplant.  Not yet, at least.  But Dr. Estep will monitor my disease and manage my symptoms.  

What he won’t do is tell me what is wrong with me, how my symptoms will progress, how long I have, how I’m doing. This is not how I saw this meeting going down.  I wanted more.  He gave me nothing.

Rick liked him.  He’s smart, don’t get me wrong.  He used big, medical words like prognostication, titration, morbidity that would have had me glazed over if he had not been talking about me.

So, I’ll have more testing.  I’ll tweak my meds until the side effects make my life intolerable.  When upon standing I don’t just see stars, but actually collapse. Then we’ll know my blood pressure is too low. It’s a balancing act between which is worse, the disease or the drugs.

He wants me to keep him informed about how I’m feeling. That’s the litmus test.  Do I get more or less out of breath when I climb the stairs?  Is the feeling in my chest pain or just pressure?  Am I more or less fatigued than usual?  How much do I weigh each morning before I eat and after I void? (pee for the lay man).

So, this is how it’s going to be.  I’m going to follow his instructions, take his medicines, weigh every morning, try to pay attention to how I’m feeling vis a vis yesterday or the day before, and just carry on….  I feel cheated.  I want a refund.  I wanted a crystal ball.