The Reality Of It All

We arrived in New Hampshire tired, excited, and hungry, and dying to get a first hand, twelve hour tour of the Dartmouth Medical Center ER. One of the above is not true.

Two hours after our arrival my heart jumped into atrial fibrilation. If you've never experienced this before, imagine someone parking a Wal-Mart truck on your chest and you're pretty close. Every step becomes an effort of supreme willpower, like you have 200lb weights around your ankles. For most HCM patients, the solution to this rather common problem is cardioversion, in which you are anesthetized for a few minutes, then shocked with paddles to get your heart back into a normal or "sinus" rhythm.

I enjoyed this so much, I decided to do it again two nights later. I won't bore you with the details of the procedure and the dangers of me being in the ER to begin with. What I want to emphasize here is how much this sucks, sucks, sucks for my family. I really don't want anyone's sympathy because this is my/our mountain to climb, it's no one's fault, and there are people who have it much worse. I know all this. But for me, I think the effect my HCM has on my family is the hardest part for me.

These two night in the ER had Christie and boys curled up in uncomfortable folding chairs trying to sleep while we waited long enough for the procedure to be safe. Christie and Rich already sick with head colds, after several weeks out of pocket, traveling, not being able to have our "stuff" with us...I just wanted us all to have a relaxing first week in the new place, the boys finally getting to build all the Legos and play the games they got at Christmas but couldn't really open because we were leaving two days later. I hated having to be in the ER so much because of this. Not to mention, Christie just started her new contract this week.

The thing about chronic illness is that it interferes with *everything.* Follow the cause and effect: I have HCM < I must be near my doctor < Christie must take a job near my doctor < the easiest way to do this at present is to be a traveling nurse < we move every 3 months < when in a new area, we don't know anyone who can watch the boys when these things happen < it would be nice to be near family, but there are no HCM specialists in Arkansas, so here we are in New England < my wife and kids are trying to sleep in folding chairs in a noisy, brightly lit ER for the second time in a week < because I have HCM < go back to the beginning.

It's enough to drive me mad, and it will undoubtedly get worse before it gets better.

The frustration of this is beyond anything I can describe. I vent about it here so I can do it once, own it, and get over it.

Most of the time, I'm not scared of HCM, or a heart transplant, or waiting for a heart transplant. But I am terrified that I will be separated from my family for long periods of time while in the hospital. I've been home with both of the boys from the day they were born. I have been their primary care-giver the majority of their lives. Christie and I worked side by side most of our marriage and it's still strange that she goes off the the hospital a few nights a week to a group of people I know nothing about.

Yet I know that eventually, a time will come when the four of us cannot be together 24-7. We're spoiled from having that for so long, and have fought really hard to have as much time together as possible. Knowing that our proximity can be shattered by my heart problem, something completely out of my control, is the thing that really, really gets to me in all of this.

These two nights in the ER have driven home once again how much we are at the mercy of the situation. I have faith in the transplant program at Tufts, in our friends who have so graciously offered to help with the kids as much as possible, and in our ability to adapt and conquer the seemingly impossible. Christie specializes in this. I just hate that she has to.

I'm supposed to go to Tufts next Wednesday for an EP study to determine which anti-arrhythmic medication  will work, and I will be admitted, most likely overnight. If the first med doesn't work, we'll have to wait a bit and try another. This is yet another situation where we're not really prepared for a long stay in Boston, but I guess we need to start figuring these things out. I've learned from experience that miracles are hard to come by, but sometimes there are angels.