Point C - A Kid Named Perry

In continuation of yesterday's post:

I re-read what I wrote yesterday and it sounds really scary. I guess on some levels it is. I will admit Christie is still pretty freaked out. Me, not so much. That's because of a 19-year old Kid Named Perry.

If you follow my wife or me on Facebook, you've seen some posts and pictures of us sitting at a table playing Settlers of Catan with him at the hospital (if you don't know what Settlers of Catan is, you lead a boring, sad life and I pity you. Buy it immediately). Those pictures don't show the details and in this case they're really important.



I met him last February. He was implanted with the same device I'm getting (a TAH - Total Artificial Heart) last July. After an unheard of 2 month recovery period, he returned home with his implanted device, backpack in a pump, and back-up batteries. He then proceeded to play basketball with his sisters, lazer tag with his friends, and work-out at the local gym.

Most people do that stuff all the time right? But people with HCM don't. Since I was about 10 years old it has hurt to run, swim, climb stairs, ride a bike, exercise...you get the picture. I suspect my mom and dad sometimes have guilt about this because they didn't notice, but how could they? HCM is invisible, inconsistent, and above all sneaky. When you consider that college basketball players and Olympic runners have dropped dead from it, you begin to understand why someone with HCM can look and act perfectly healthy. No one can spot it without an echo-cardiogram and a skilled, experienced technician to root it out.

Perry moved back to the hospital last February to be monitored for a minor complication, and decided to stay as long as he needed to raise his status on the waiting list and get a heart young enough, yet big enough to meet his needs (body and heart size, gender, blood type, age of heart, etc. is crucially important). I've spent hours with him discussing all this - very deep conversations for a 19- year old.

The point is this - Perry has made me realize that I really don't have any context for what this will be like before vs. after surgery. For people with advanced HCM, dropping a pill or keys on the floor can ruin your whole day, because bending over to pick them up is the equivalent of running 2-3 miles for the average person. And the average person would be sore, but they would be able to function afterwards.

To give some perspective, the day before I entered the hospital last time, I dropped a pill on the floor. Christie was at work, the kids were asleep. Normally I would have left it, but I was afraid the dog would eat it and drop dead. I bent over to pick it up. I was so winded as a result that it took me nearly 45 minutes sitting still on the couch before I had the air and energy to climb the stairs to the bedroom. Another 30 minutes sitting on the side of the bed because changing positions to lay down would have sent me into another round of breathlessness. It's been like this for quite a while; bending over, squatting, walking up a short incline, rolling over in bed, over-reaching with my arms, carrying a gallon of milk from the garage to the kitchen...it's gotten to where even the smallest tasks carry a huge price in terms of energy, nausea, headache, sleep loss, chest pain, etc. You can only push through that for so long.

Perry walks all over the hospital without getting out of breath. He shoots hoops outside with the nurses. He does fine on 5 hours of sleep a night (I've started needing 10-11 and I still fall asleep for several hours in the afternoon if I sit still for too long). He still has to watch his sodium. He can't shower. He can't bungee jump. But even living in the hospital with a pump strapped to his back and tubes stitched to his abdomen, his life is in many, many ways better than mine has been in almost a year. Perspective is everything.

So this isn't as scary for me because I've lived in close proximity to someone who is thriving and enjoying more activity and better health than I while living on a TAH. This story is not unfamiliar to most HCM transplant candidates. And the fact that it gets us closer to a real heart is a huge bonus. The road to get there is dark and filled with terrors, but when you see a survivor standing in the light near the end, it robs the shadows of their power. Perry has done that for me.

He's also a formidable opponent at Settlers of Catan.