The Feisty Fontan

Now I need to explain the poop reason. Or the fear of poop reason. In reality, developing protein losing enteropathy (PLE) may have been unavoidable, but it could have been diagnosed a lot earlier if I had just been willing to collect my poop. But it was so off my radar and I was so sure I was in the safe zone, that I just didn’t see the need to collect my poop.

When we moved to Florida two years ago, I had to change doctors. At my first appointment with my new adult congenital cardiologist, she asked me if I had ever been tested for PLE. As I gave her a confused look, she explained that the test involved a stool sample. Nope, nope, nope…not once in the 18 years he treated me did my last doctor ever ask for a poop sample. And here is this new doc, 20 minutes in my first appointment with her, asking me for this. Take some blood, I’ll pee in a cup, let’s run some normal labs and break the ice before you ask me for poop!!!

I left the appointment with very large brown paper bag that contained a poop collection kit. (Yes, there is a whole kit for this process.) I was to collect the poop at home (where it was “more convenient”…HA!). I put that bag in a cabinet and shut the door. I told my husband that I would work on finding a local lab that would take the poop sample. At that moment, I would like to say that my intentions were pure and I was committed on following thru with the stool test in a reasonable amount of time, but I’m not sure that would be true. I was traveling a lot for work and just thinking about the logistics of dropping off my specimen early one morning was more than my schedule would allow. Plus, it was gross as shit! (Pun totally intended)

A few weeks went by and the bag sat. We moved to a new house, the bag moved with us and got placed in the back of another cabinet. A few more weeks went by and the poop collection kit still went unused. Every once in a while, my husband would ask me if I was ever planning on ever doing my “poop smear” as he liked to call it. I would respond by going on this tirade about how the doctor’s office forgot to give me an order to go along with the collection kit and that without a piece of paper explaining why I was bringing them my poop, what to do with the poop and where to send the poop results, I was not going to randomly walk into a local lab with a bag of my poop. I was so adamant that I was not going to be the crazy lady carrying her poop.

Would you believe that a year and half went by with my poop collection kit collecting dust? It’s actually still sitting in the cabinet. I never used it. I was two weeks from seeing my cardiologist about my symptoms and I really truly did plan on getting the test done before that appointment. But I waited too long, let myself get too sick and end up hospitalized and had to have a poor underpaid patient care tech collect my poop for me. I had to watch her walk by carrying it while avoiding all eye contact with me. Which was way more embarrassing than just being a big girl who collected her own poop.