So you're exiting your bathroom, as clean as it's possible to get in the sink, and headed for your small closet (that's just next to the bedroom door). There's a quick knock and the door flies open. There stands a younger person of the opposite sex - a total stranger - and you're wearing nothing but a surprised look. They hurriedly apologize and close the door, but they're outside, waiting for you to get dressed. You scramble to get dried off and clothed as quickly as possible because you know from experience that while it takes the average person about one to two minutes to do this, the person outside your door isn't counting down those two minutes in real time. They're going to knock on the door about every 15-20 seconds until you're dressed, and there's no guarantee that they won't throw open the door a second time without your consent (if you're connected to a TAH, getting dressed takes longer than normal because you're working around the cannula sites in your abdomen and trying to wrap an abdominal binder under your shirt). After frantically getting dressed, and mostly still wet, you open the door. This person is there to scan the "equipment" in your room.
Oh, by the way, They're scanning your furniture so they can charge you for it - approximately $2500 per day for using your bedroom, the bed, the chair, and your bathroom. This is the part I wish I was just making up - because you've been here for 93 days for grand total of $232,500. Add $2500 per day that you'll be there until you incur the balloon payment - in my case for transplant - at the end where you can tack on another $997,000 - also not a made up number, and that's only if something unexpected doesn't happen that will add to that cost. So as of today, you're in the hole $1,229,500. This might be a good time to whip out a calculator to see what percentage of that will be a co-pay. Keep a tissue box nearby - because while you've been incurring this bill, your family is living on your spouse's paycheck (which is enough to support approximately 2.5 people) and a small percentage of whatever you claimed on your tax return in 1997. You are not currently able to earn additional income because you're trapped in your bedroom. You start to warm to the idea of a universal health care system and the public hangings for medical insurance CEO's.
So your new friend scans the furniture and you settle back in to what you were doing.
DING BONG
DING BONG
DING BONG
DIT DIT DIT......DIT DUU
DIT DIT DIT......DIT DUU
BLAT!!! BLAT!!! BLAT!!!!
You've almost learned to ignore all the sounds coming from the other rooms, but sometimes they go on and on and on and on and on and on and on and on and on and %^*&%@# on until you want to murder kittens with your bare hands. Put headphones on? Gotta be careful about that because the TAH may alarm and the headphones would keep you from hearing it. Just try harder to focus.
Focusing....focusing....focusing...
Time for your meds and vitals again? How much work did you get done?
You give up and decide to go for a walk. You're not allowed to go anywhere but the bedroom and hallway, but you need at least some exercise, so you pace the hallway. Up and down, back and forth. Every person you pass asks How Are You Doing? You want to refer them to these blog posts. You mumble an acknowledgment and keep pacing. A new group enters the hall - a mix of acquaintances and strangers. They're attending to people in the other rooms. The crazy thing about this group is that when they appear, you disappear. They stand in bunches in the middle of the hall, forcing you to walk around or through them. As they move from room to room, they clip your shoulder or elbows in their hurry. The scariest thing about this is that you're wearing a backpack with tubes coming out of the side, and they're connected to your abdomen by stitches and a very tight bandage. But they stick out a little bit, meaning you need wider clearance than the average person. You're very worried that these tubes will get caught on something or someone, so crowded places are not your friend. But this new group doesn't seem to notice the tubes connecting the backpack to your artificial heart - the very thing keeping you alive from moment to moment. They brush against them, they bump into them, without any acknowledgement of your existence. Eventually, you give up trying to walk because it feels too dangerous and you go back to your room. You've been asking the People In Charge for about a month for a treadmill or exercise bike so you can exercise in a safer way - you've even seen both pieces of equipment - they're at the end of the hall, not being used by anyone. But the weeks roll by and when you continually ask, you're told about paperwork, schedules, authorizations, and protocols that are beyond your scope of understanding, but are meant to serve as an excuse for lack of progress with the treadmill or bike. So you sit in a chair, feeling your strength ebb away and your muscles weaken each day. You've been told over and over that you'll recover from this confinement (and surgery, in my case) more quickly and successfully the more fit you are going into the procedure. Despite this, there is little to no effort made to help you stay fit - just the jostling monotony of trying to walk in the hall, fearful that you're going to get hurt.
You run your tongue over your teeth. It feels disgusting, despite regular brushing. You're overdue for a teeth cleaning. You can go downstairs to get your teeth cleaned (after asking the People In Charge for three months), but you'll have to a) be put under anesthesia, b) get disconnected from the portable heart pump and connected a large machine on wheels because "it's protocol" (it will generally take about 3-4 days to be put back on the backpack). You're also not supposed to eat until after the cleaning tomorrow, despite the fact that the only reason you wouldn't eat is if you're going under anesthesia - which I'm pretty sure no one does when having their teeth cleaned. What time will it be? Take a wild guess! You could go without food from midnight tonight until 8pm tomorrow. Hopefully it will be in the morning, but there's no way to know. Why do you have to fast before a teeth cleaning? Because "it's protocol." There's no medical necessity for it. It's just The Way Things Are Done, and asking for an exception based on common sense is met with confusion and impatience. Why are you holding up the process?
You give up on getting your teeth cleaned - despite being told by The People In Charge that it's important to go into your upcoming surgery with optimal dental health because the mouth is the #1 source of infection and can cause the whole thing to fail, resulting in (worst case scenario, death) all kinds of problems. You give up on exercise. You give up on having a place to keep your food without it being randomly thrown away. It's rained so much, you give up on believing you'll ever see the sun again, or feel a breeze on your face. You'd be happy to go outside in the rain, but you can't get your backpack pump wet. And it's cold. Best you can do is sit and stare out the window at the brick wall of an adjacent building.
It's time for bed. Have you recorded everything you've drank and all your urine for the day? Did you check your vital signs all five times? Leave any food in the fridge that may get thrown away? You like to read before you go to bed but despite repeated requests for the dead lightbulb over the bed to be changed, it still hasn't been. Getting into and out of bed is a real production so you set things up where you don't have to. TAH pump on the table at bedside, along with a water bottle and urinal. You'll need to put the urinal in the bed with you each time you pee (hope you're a good aim). The bed mattress is covered in vinyl - easy to clean. But it doesn't breathe, so you wake up each night 4-5 times in a pool of your own sweat, and shift around to find a dry spot. Sometimes you can't. You're laying on your back the entire night because to lay on your side causes pain at your cannula site. The sweat is the worse because you can't shower, so you do your best to get the stink off every morning and ask your escort to change the bed sheets.
Sleep is the only escape from all of it and you peacefully drift
GET THE HELL OUT OF HERE! I'M GONNA KICK YOUR ASS!!!!
Just ignore that - it's the delirious elderly woman in the next room threatening the nurses at the top of her lungs. She'll scream a variety of threats and vulgar insults throughout the night. Sometimes they wake you up, but eventually you're too exhausted and just sleep through them. It goes on most of the next day while you're trying to rest, work, or have a serious conversation with one of your kids, or your spouse who you've not seen in three days.
Don't worry, she'll fade into the call bells, bustle, fire drill alarms, bed alarms, and code alarms. Your room is across from the meeting place of the People In Charge, who are for the most part quiet and respectful during the night. But from time to time, one of the escorts, or someone from elsewhere in the house stands in the hall between the two rooms and has loud conversations filled with laughter and exclamations. You finally fall asleep wondering how many more days this will go on. For some people, these are the last experiences they'll ever have. You hope that's not how it turns out for you, but there are no assurances. There's just the intrusions, the frustrations, the isolation, the measuring, the labs, the sweating, and most of all, the waiting.
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I have many readers who themselves suffer from HCM; some will eventually need a transplant. It's probably harrowing to read this account and get a glimpse of what lies ahead. In regards to that, I'll talk about my experience specifically in the next post, because I've found a few ways to make things easier, more tolerable. Also, note that every day isn't exactly as I've described above. But you get the idea.
The point is - I don't really care how hard it seems. I will not whine, I will not break down, and I will not quit. I won't do this because of my family. And I won't do it because of Point C - A kid named Perry.
Perry lived in this room for months before his transplant. He had migraines and couldn't get an eye exam. He had back pain from the bed, so slept in the chair. He was nineteen years old. Nineteen. He never got to see a dream fulfilled, or even fail really. He never dated or had sex. He never knew the joy of holding his own child, or even a niece or nephew. He never got to travel much and hadn't even tried Indian food until I forced it on him.
Perry didn't complain. He didn't rage against his HCM, or against his TAH, or against his predicament. He just did what had to be done and he didn't truck with other people feeling sorry for him because he had to do it. He understood frailty, fear, and weakness. But he didn't use those as a shield to hide behind or as a sword to lash out at other people.
I lapse into self-pity parties at times. I do. But then there's Perry, in my head, like some kind of prankster Obi-Wan-Kenobi, saying, "Quit whining. You have to do this, so just do it. Also slip some laxitive into Josh's coffee if you get a chance." That was pretty much the core of his uncomplicated philosophy about pain and suffering. So I have no excuse for whining. And again, I hope this blog doesn't serve as a place for me to do so, but rather a place to inform and encourage. Most of this stuff has caught our family by complete surprise. Hopefully in putting it here for all to see, it won't do the same to someone else.
I am constantly in awe of how you handle this all and continue to be such a supportive husband and father! You do more for us from that hospital room than most do while at home!
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