A quivah in me livah

Liver disease can live in your body for years and years before any of the symptoms decide to materialize. oOnce they do they can come at you full force like a locomotive or a smack in the face, a real hard smack, one that really hurts and stings. One of the more fun symptoms is the constant fatigue. I’m not saying the exhaustion I and other Hep C victims experience is any more difficult to deal with then anyone else’s, but it is nearly impossible for me to put the level of exhaustion into words.

Waking in the morning, with the thought of having to swing my legs off the bed walk to the bathroom and start my day is daunting. I feel like gravity has affected me differently than other folks, like I’m always being pulled to the ground, it takes every fiber and all the will power in my body just to move from point a to point b. I’m walking through sludge or wet sand. The mere task of driving to the drug store, getting gas, walking to the mail box, mowing the lawn or carrying a laundry basket takes on the same magnitude as a Shackleton expedition. The absolute worst is not having the energy to run around with my kids, it wrenches my heart into two. Hunched over and drained of any pep or vigor, my head sinking down from its own weight between my shoulders, belly expanding with fluid, ankles and legs swollen. Tired. Would the same choices have been made had I known what I know now? Hind sight is 20/20 which none of us is blessed with.

Making it through work feels like running a marathon, I could sleep for days after a decent shift. Unfortantely, my mind won’t turn off. Fatigue and sleepiness are two different things, yeah, they often run hand in hand, but you can be fatigued and your mind still races a mile a minute. To help me get though a day at work I generally sneak away mid-afternoons, months ago I was going for walks and grabbing coffees to help maintain my stamina. Not any longer, those days are long gone. Lately, I’ve been crawling into my car, driving the five minutes to the waterfront, turning the AC to high, putting the seat back and covering my face with a sweat shirt as Itry to get a 20 minute nap in.

My sanctuary is right out in open, across the harbor from Logan airport, planes fly directly overhead. I sit next to an abandoned warehouse that looks like it could house an aircraft carrier, jersey barriers blocking the way; you sort of have to weave in and out of the pointless security Massport has put up. Regrettably the area is policed by Massport, Boston’s finest and the State Troopers driving by and either telling me to screw or making sure I’m still alive and not slumped over because of an overdose. Eventually all but the most of the men in blue began to recognize my car and begin to leave me alone.

So, I was on one of these short sabbaticals from work, sleeping in the front seat of my car when my cell phone rings. I’d normally ignore it unless it was my wife.  Transplant Center. “Hello?” it was Ellen my transplant coordinator; she’s the RN who pulls all my exams, tests and appointments together. It’s also her job to be very positive and hopeful which she does wonderfully. Financial aid question, Ellen; infectious disease appointment, Ellen; helping me get a prescription filled that my insurance provider has declined, Ellen; sending my paperwork to the evaluation board, (made up of Hepatologists, psychiatrists, surgeons, social workers, gastrointestinologist, anesthesiologist and probably some other ologists of one sort or another) for a new liver and acting as my advocate, Ellen.

That why she was calling, it was Wednesday the 6th of July, she presented my case to the board that day and they okayed me for a new liver. I’d be listed nearly immediately. I thanked her, sat back in my chair, turned up the AC and silently cried a little before I called my wife and my mother.