"You've got a hell of a lot of scarring, Dave," Dr. Maron said, fixing Christie and I with a grim stare. "I don't think there's anything that can be done at this point. You're going to need a transplant."
I don't remember having much of a reaction to these words until I woke up in a Boston hotel room the next morning, wondering how to explain this to Rich and Brennan, 10 and 5 at the time. Christie, unable to sleep had been awake for hours, in the shower, likely crying and trying not to have a nervous breakdown.
I could see the road stretching out in front of me, like in a movie, shrinking into the distance. I knew that monsters lay down that road. Some lay hidden in the scrubs along the edge. Others stood boldly in the middle of it, smoke wisping from their nostrils, threatening fire and consumption. Still others waiting to greet us as friends. They would promise to walk this road with us, to see it through to the end, as only friends would do. These were the most plentiful, yet the most deceived. I knew even then, looking down that road that not only would there be some who, unable to go the distance, would decide at some point that there was no longer anything noble about the fight, and that they would even possibly become resentful, seeking to devour us to assuage their own guilt. I saw all of this in that moment. I also saw upheaval, fear, sadness, confusion, indecision, mis-understanding, and a testing of will. So much testing.
But that morning, with that road stretching out in front of me, I knew what I had to do. I had to get up, put my feet on the floor. I had to rent a car. We had to look at apartments. We had to hit the ground running because time was precious, mere months if I continued to progress, according to Dr. Maron. We knew there was a move to Boston in our future, and the sooner, the better. We'd have to move heaven and earth to make it happen. But it started with putting my feet on the floor that morning. And of all the mornings I've struggled to do that, this struggle was the most difficult.
But I did it, and it happened. And so many things happened in between my feet hitting the floor that morning and today. Today, when I stood, I could see no road in front of me. That future is too unpredictable. It could be a road filled with many happy and healthy years, memories, good friends and the fulfillment of all that we've dreamed and hoped for since that morning in Boston. It could be fraught with peril, more monsters, lurking, waiting. There may be no road to walk down. This is a more uncertain journey, but certainly the end of the most difficult one in my life to this point.
The gory details are recorded here, of course, but who knows what will happen after this? My feelings are mixed. Relief, terror, joy, sadness. Someone died this morning, and their loved ones probably see a long road stretching out in front of them. This one is filled with monsters too, but they are more sneaky, and will become constant companions. Some monsters have to be lived with, and made peace with, though it will always be an uneasy one - but they won't go away. They must be accepted and we must learn to let them have their place in the sorrow and recovery, and in whatever healing there is to be had. I don't pretend that road is any more difficult to walk than the one I have been on for six years now.
There's really nothing left to say, and everything left to say. I have no message here for my wife or boys - those are all stored on flash drives that they can watch, or not, at their discretion, should I not be around to say what is necessary to them. To the friends and family who have gone all the way, I wish there were some reward for you as well. We've picked up a few companions along the way, but a few remember those first months when I began to notice something was wrong, all the way back in 1998. I think of Smitty, Leslie, Jason, Tiffany, Spencer, and Robin particularly. They have all endured with us. They were the first to come to the rescue when our business needed saving. Some of them came to the rescue when I needed saving, in more ways than one. There are the many doctors who helped up on our way, either by pointing us in the right direction, offering solutions, or even highlighting our error when our efforts were futile. There's Lisa Salberg at the HCMA, and Mindi (Rene) Barger/Hughes to whom I literally owe my life a dozen times over. And there are the monsters. They know who they are, and they are not evil, they are only human. I inflict upon them grace and forgiveness. Maybe it will eat them up on the inside, or maybe it will change them. I don't really care either way.
Whatever happens on the other side of this, I do know one thing. We started down that road with determination and barely concealed fear. It's odd how I feel the same emotions on this day, here at the end of that road. But we've come to the end of it, or at least the end of this part. We did it. Through heartache, strain, sacrifice, tears, stress, anxieties, uncertainty, and sheer force of will. I refuse to give anyone else credit for it, because we have earned it, and we deserve that acknowledgement, if only from ourselves. "We have done the impossible, and that makes us mighty," Captain Mal Reynolds tells his suffering soldiers in the pilot episode of Firefly. Reynolds goes on to lose the war, but he knew, come what may, he'd done everything in his power to make sure he won that battle. And we have won, whether the day brings great joy or sorrow, we have done what we set out to do. That in itself is a good way to End, either this section of the road, or even the whole journey.
I hope the next thing I do is put my feet on the floor. I believe it will be. But regardless, I believe that winning this battle was important, physically and spiritually. I hope to talk to you all on the other side. Thanks again for reading.
Tuesday, May 24, 2016
Friday, May 6, 2016
I'm Holding Out For A Hero
It's Nurse Appreciation Week. I have no
meme to share because none of them capture my sentiment. Not only do
I watch my wife struggle each shift to do the best for her patients
in the face of insulting pay and administrative neglect, she does it
with grace and compassion. Only after she's clocked out do the tears,
the anger, the frustration come - but she never lets them see it
because it's not their fault. Next to teachers, nurses probably have
one of the most thankless and difficult jobs. They suffer more
physical injuries than construction workers and I witness this all
the time - sore and strained muscles, aching back, headache from low
blood sugar because it's hard to get breaks for food. Exhaustion and
grief are inherent to the job and yet my wife keeps going. We need
the paycheck, but there are plenty of other ways to make money. She
also does it because she wants to help people. I wish I had such
noble ambitions.
I see it in my nurses as well, here on
the HVIC. They hold back tears, collapse into chairs at their
stations, long for a small break between cleaning up poop and vomit.
I hear the strain in their voices somedays, see the slump of their
shoulders and I don’t have to ask - I know they are carrying
someone’s burden on their back. Maybe the woman dying down the
hall, or the husband who has lingered too long at his wife’s
bedside after she’s gone - having to gently ask him to finally say
goodbye. They carry my burden - literally, when I leave the unit,
dragging my backup equipment through the hospital just so I can get
some real coffee or a change of scenery. They carry it when they
return from a block of days off and I still sit here without a heart.
Their eyes follow my children as they go back and forth, day in, day
out, doing their best to endure our time apart. They try to imagine
it, and it’s sometimes hard for them to talk about it because it
troubles them too, sometimes deeply. They wash my hair, bring me
water, change my sheets. My wife does this because she loves me; they
do it because it’s what they want to do on this earth as a career,
just like her. I don’t understand it. Nurses have saved my life -
my wife more times than I can count - from dangerous procedures in
ER’s, to meds that would have killed me, to arguing and opposing
doctors who thought they knew better but were wrong. Nurses have
saved me from A-Fib, walked me through an ablation, multiple swans
caths, heart removal, recovery from TAH surgery. They’ve advocated
for me, sometimes vehemently, in the face of hostility from doctors
and managers. It was a nurse in training who first heard my murmur, a
nurse who helped me maintain and stay alive with HCM, located life
saving medications when mine were discontinued. A nurse who found a
way to keep me medicated while we travelled despite me having no
general care doctor or home address. Nurses stood by Perry’s
bedside as he died, then kept themselves together long enough to come
and tell me. Their own grief surely eclipsed my own, but they
postponed it to make sure I was okay. They have pushed and chided me,
listened, and endured alongside me for seventeen years. I have the
greatest respect for our military and our teachers. But adjectives
simply fail me in my attempt to fairly articulate what I have
witnessed over these years in the devotion of my nurses, my wife
being the chief among them. As much as I hate being sick, I’ve been
humbled and awe-struck in the assurance of their care for me, and it
has changed me. A yearly celebration of nurses isn’t enough. I
don’t know how to say thank you to all of them, or even where many
of them are. I just hope that their compassion and ethic has worn off
on me, at least a little, and that we all learn to value them more as
a society than we do. They are the true heroes.
Tuesday, May 3, 2016
So How Are You Doing? (Redux - The Evening Edition)
You've not been out of your house for nearly four months now, but you're keeping it together because you have a project to work on. For me, it's the revision of an 84,000 word novel. Maybe you're putting together your resume for that dream job. Or interviewing for it over the phone. Or maybe you just want some privacy to think, pray, meditate, or finish whatever project you're working on. It could be any of those things - we all know how it is to be interrupted when we're "in the zone." These are just some examples to think of. But for the sake of simplicity, let's say instead of taking your sink bath this morning, you decided to do it after lunch.
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.
---------------------------------------------------------------------------------------------------------
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.
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.
---------------------------------------------------------------------------------------------------------
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.
Sunday, May 1, 2016
So How Are You Doing? (Redux -The Noon Edition)
walk right in without knocking.
Believe it or not, the writing of yesterday's post was interrupted in EXACTLY the way I was describing at that very moment. The new Chaplain came in WHILE I was typing that last sentence. No knock, no invitation. So I couldn't finish my thought. I CAN NEVER FINISH MY THOUGHT.
As, I was saying - if the nurse isn't watching, people just...come in. Now, you can be a jerk and yell at them and tell them to get out. But it's not like shooing a salesman off your porch. You're going to see this guy in the halls about three times a week as long as you live in this house. Do you really want to yell and be a jerk to everyone who barges into the room? Maybe you should, but there are social repercussions. It doesn't take long to develop a reputations as being grumpy, ill-tempered, "stressed out," or "that guy with all the signs on his door." So you have to just deal with it, sorry. Make sure you wear clean underwear because you literally don't ever know who's going to see it.
The worst of these types of incidents are what I call the "finger people." Imagine that while you're sitting in your room, you're waiting on something. In my case a heart. But maybe for you, it's the callback for your dream job, or the phone call confirming your pregnancy. Maybe a loved one has been missing and you're waiting to hear from the police. Or the answer to a marriage proposal. Fill in the blank with the thing that would stress you out the most - how about the call to tell you whether or not the cancer was benign or not? Except you won't get this news by phone. It will be delivered personally to your room, probably by someone you don't know and have never met. So you're in a constant state of anticipation.
Without a knock, the door swings open. There stands someone you don't recognize, and they seem very hurried and excited. Is this it? Is the the moment you've been waiting for? Could it finally be happening? The wait has been agonizing (in my case, four years), but maybe today is the day. All these thoughts flash through your mind as the person holds up a wait-a-second finger so they can hear someone talking to them. You can't see who it is, but it just might be that Big Thing you've been waiting for.
The person walks away, but leaves the door open, because they're coming back. Of course they're coming back. They have big news to tell you and it's urgent, so they've just left the door open for a second while they make sure they have the details of your Big News right. You continue to stare at the doorway, imagining all the phone calls you need to make to share your Big Moment with those closest to you, so they in turn can pass it on to all those who have been waiting with you, hoping and praying for you for so long, that you'll get the News you want, that you need, in order to get on with your life.
And you wait.
And you wait.
5 minutes. The suspense is killing you.
10 minutes. You can't take it anymore.
You step into the hall to find
(Hang on a minute. someone just came in to clean your room, and even though you're hanging by your toenails waiting for this Person to come back - or maybe you're just trying to read a blog post and the author keeps interrupting himself - the cleaning person insists on making small talk about the weather, your (now cold) food, the television show they watched last night, or whatever. This goes on for about 10 minutes)
So you step into the hall and the person isn't there. You ask around and find out that no, they really didn't need you for anything, they just had the wrong room. (This has happened to me three
Hang on - nurse is here to get vitals again.
times now with the X-Ray team). So you sit back down, try to eat your cold food, and you keep waiting. And waiting. I hate finger people. I want to break their finger.
Time for lunch - wait for your escort, then off to the kitchen again. Remember to eat healthy!
Today's choices:
Cheese steak with what looks like Oscar Meyer beef slices, canned Nacho cheese, raw onions, and a cold hoagie bun.
Buttermilk Fried Chicken, greasy "creole" cabbage (there is no seasoning on this cabbage and adding a rich adjective doesn't make it so. It's unseasoned, steamed cabbage), BLT pasta salad - Oo! Look at all that bacon!
Ground "Beef" BBQ (actual beef doesn't smell like toejam. What is this stuff?), with baked beans, and cold (well, warm) slaw (you're allergic to mayo, so no slaw for you. Pick another veggie).
Curry (curry sauce from a can, enough salt to kill an entire continent) with fatty chicken, overcooked shrimp, or flavorless basmati rice (the people behind the counter couldn't pick ginger out of a spice line-up, even if you made them snort it).
Sushi! A healthy alternative! And it actually looks good! But you can't get that - you're not allowed to use your $10 meal ticket on the sushi. You actually thought they were actually going to make healthy food available to eat? Joke's on you. Move along.
Pizza, slathered in greasy pepperoni or sausage, and high-salt mozzarella cheese. You'll need a pair of tongs to retrieve a slice from the grease pond it's floating in.
Look - there's a whole counter with healthy choices like couscous, low-carb pasta salads, and veggie mixes. You can get something from there, or buy a drink to go with your meal. But you can't do both. Upon closer inspection, the sodium content of most of these is at least 580mg per serving. Same for both of today's soups.
How about a sandwich? Which fatty, sodium laden, Oscar Meyer lunchmeat would you like on it? Or a salad - wait, you can't eat a lot of green leafy veggies because it affects your blood coagulation too much and could do harm. Skip the salad.
Don't even think about trying to get a full meal, a drink, and a piece of fruit or a cookie for your $10 voucher, or you'll have to go out of pocket every meal.
Get a drink - would you like a soda, a chemically enhanced diet soda, skim milk, or sugary fruit juice? Or there's weird stuff like Basil flavored Coconut Water, or lab-created "energy" drinks (I tried one of these a few weeks ago and thought I was going to need a gastric bypass. Avoid). You can drink water, of course. For every meal. Three times a day. For months on end. They also have milkshakes. But watch your blood sugar level!
Okay, did you pick something? Great! Follow your escort back to your room. Your food is cold again so hopefully you didn't get anything that won't microwave.
Or maybe you didn't pick anything. Maybe your spouse brought up some food to your small refrigerator in the other bedroom. Or maybe you yourself made something and put it there. It's way healthier and tastier than anything in your kitchen, and you made enough to last for the week, for situations just like this.
You go to retrieve that food. But alas, it's not there. The food policeman who lives in your house with you threw it away. Why? Because it was more than three days old. Didn't you know that all food, no matter what it is, spoils after three days? You didn't need the containers the food was in did you? Hope not, because they're gone too. Maybe you should have just gotten the fried chicken.
Screw it - you call Dominos or the chinese place from your room and have it delivered. By this time, your stomach has started eating itself. The food arrives. It's hot, it's fresh, it's full of preservatives and sodium, but no more so than the food in your kitchen you decided not to eat.
You lift a bite to your mouth.
The door opens. It's a dietician. An illiterate dietician. She slipped past your escort, just like the Chaplain. The staff has been so kind as to ask them to come talk to you about your food choices. She informs you that at each meal, you should try to eat:
1) A card-deck sized portion of lean meat (I'm assuming in this case that would be the overcooked shrimp from the curry that you didn't get because you don't even like Indian food - unless that "beef" was actually hedgehog or mongoose, in which case you should have went with the BBQ. At least I think hedgehog and mongoose are considered "lean").
2) A vegetable - did you pick the flavorless cabbage (assuming you like cabbage), one of the many starches posing as veggies, the mayo-based coleslaw from a can? No? Well, you could just eat a salad, she says. The ones you really need to not eat much because you'll die? Yeah. Those salads.
3) A starch - those are plentiful, in fact they comprise about 75% of the food in your kitchen. You never realized there were 476 ways to prepare a potato, but someone in your kitchen does!
After a quasi-scolding about your food choices, you choke down your cold pizza. Wait - where are you going? Uh-uh. You're staying in your room all day. You *might* be able to get your escort to take you to another room or even outside later, but it's raining outside. It's always raining. It's like living in Seattle or London. But crappier.
Next: on the afternoon edition of "So, How Are You Doing? (Redux)," you're going to try to write an e-mail, or a heartfelt letter to a loved one, or watch a 44 minute television episode. This will require a few uninterrupted thoughts and a bit of concentration. Brace yourself.
Believe it or not, the writing of yesterday's post was interrupted in EXACTLY the way I was describing at that very moment. The new Chaplain came in WHILE I was typing that last sentence. No knock, no invitation. So I couldn't finish my thought. I CAN NEVER FINISH MY THOUGHT.
As, I was saying - if the nurse isn't watching, people just...come in. Now, you can be a jerk and yell at them and tell them to get out. But it's not like shooing a salesman off your porch. You're going to see this guy in the halls about three times a week as long as you live in this house. Do you really want to yell and be a jerk to everyone who barges into the room? Maybe you should, but there are social repercussions. It doesn't take long to develop a reputations as being grumpy, ill-tempered, "stressed out," or "that guy with all the signs on his door." So you have to just deal with it, sorry. Make sure you wear clean underwear because you literally don't ever know who's going to see it.
The worst of these types of incidents are what I call the "finger people." Imagine that while you're sitting in your room, you're waiting on something. In my case a heart. But maybe for you, it's the callback for your dream job, or the phone call confirming your pregnancy. Maybe a loved one has been missing and you're waiting to hear from the police. Or the answer to a marriage proposal. Fill in the blank with the thing that would stress you out the most - how about the call to tell you whether or not the cancer was benign or not? Except you won't get this news by phone. It will be delivered personally to your room, probably by someone you don't know and have never met. So you're in a constant state of anticipation.
Without a knock, the door swings open. There stands someone you don't recognize, and they seem very hurried and excited. Is this it? Is the the moment you've been waiting for? Could it finally be happening? The wait has been agonizing (in my case, four years), but maybe today is the day. All these thoughts flash through your mind as the person holds up a wait-a-second finger so they can hear someone talking to them. You can't see who it is, but it just might be that Big Thing you've been waiting for.
The person walks away, but leaves the door open, because they're coming back. Of course they're coming back. They have big news to tell you and it's urgent, so they've just left the door open for a second while they make sure they have the details of your Big News right. You continue to stare at the doorway, imagining all the phone calls you need to make to share your Big Moment with those closest to you, so they in turn can pass it on to all those who have been waiting with you, hoping and praying for you for so long, that you'll get the News you want, that you need, in order to get on with your life.
And you wait.
And you wait.
5 minutes. The suspense is killing you.
10 minutes. You can't take it anymore.
You step into the hall to find
(Hang on a minute. someone just came in to clean your room, and even though you're hanging by your toenails waiting for this Person to come back - or maybe you're just trying to read a blog post and the author keeps interrupting himself - the cleaning person insists on making small talk about the weather, your (now cold) food, the television show they watched last night, or whatever. This goes on for about 10 minutes)
So you step into the hall and the person isn't there. You ask around and find out that no, they really didn't need you for anything, they just had the wrong room. (This has happened to me three
Hang on - nurse is here to get vitals again.
times now with the X-Ray team). So you sit back down, try to eat your cold food, and you keep waiting. And waiting. I hate finger people. I want to break their finger.
Time for lunch - wait for your escort, then off to the kitchen again. Remember to eat healthy!
Today's choices:
Cheese steak with what looks like Oscar Meyer beef slices, canned Nacho cheese, raw onions, and a cold hoagie bun.
Buttermilk Fried Chicken, greasy "creole" cabbage (there is no seasoning on this cabbage and adding a rich adjective doesn't make it so. It's unseasoned, steamed cabbage), BLT pasta salad - Oo! Look at all that bacon!
Ground "Beef" BBQ (actual beef doesn't smell like toejam. What is this stuff?), with baked beans, and cold (well, warm) slaw (you're allergic to mayo, so no slaw for you. Pick another veggie).
Curry (curry sauce from a can, enough salt to kill an entire continent) with fatty chicken, overcooked shrimp, or flavorless basmati rice (the people behind the counter couldn't pick ginger out of a spice line-up, even if you made them snort it).
Sushi! A healthy alternative! And it actually looks good! But you can't get that - you're not allowed to use your $10 meal ticket on the sushi. You actually thought they were actually going to make healthy food available to eat? Joke's on you. Move along.
Pizza, slathered in greasy pepperoni or sausage, and high-salt mozzarella cheese. You'll need a pair of tongs to retrieve a slice from the grease pond it's floating in.
Look - there's a whole counter with healthy choices like couscous, low-carb pasta salads, and veggie mixes. You can get something from there, or buy a drink to go with your meal. But you can't do both. Upon closer inspection, the sodium content of most of these is at least 580mg per serving. Same for both of today's soups.
How about a sandwich? Which fatty, sodium laden, Oscar Meyer lunchmeat would you like on it? Or a salad - wait, you can't eat a lot of green leafy veggies because it affects your blood coagulation too much and could do harm. Skip the salad.
Don't even think about trying to get a full meal, a drink, and a piece of fruit or a cookie for your $10 voucher, or you'll have to go out of pocket every meal.
Get a drink - would you like a soda, a chemically enhanced diet soda, skim milk, or sugary fruit juice? Or there's weird stuff like Basil flavored Coconut Water, or lab-created "energy" drinks (I tried one of these a few weeks ago and thought I was going to need a gastric bypass. Avoid). You can drink water, of course. For every meal. Three times a day. For months on end. They also have milkshakes. But watch your blood sugar level!
Okay, did you pick something? Great! Follow your escort back to your room. Your food is cold again so hopefully you didn't get anything that won't microwave.
Or maybe you didn't pick anything. Maybe your spouse brought up some food to your small refrigerator in the other bedroom. Or maybe you yourself made something and put it there. It's way healthier and tastier than anything in your kitchen, and you made enough to last for the week, for situations just like this.
You go to retrieve that food. But alas, it's not there. The food policeman who lives in your house with you threw it away. Why? Because it was more than three days old. Didn't you know that all food, no matter what it is, spoils after three days? You didn't need the containers the food was in did you? Hope not, because they're gone too. Maybe you should have just gotten the fried chicken.
Screw it - you call Dominos or the chinese place from your room and have it delivered. By this time, your stomach has started eating itself. The food arrives. It's hot, it's fresh, it's full of preservatives and sodium, but no more so than the food in your kitchen you decided not to eat.
You lift a bite to your mouth.
The door opens. It's a dietician. An illiterate dietician. She slipped past your escort, just like the Chaplain. The staff has been so kind as to ask them to come talk to you about your food choices. She informs you that at each meal, you should try to eat:
1) A card-deck sized portion of lean meat (I'm assuming in this case that would be the overcooked shrimp from the curry that you didn't get because you don't even like Indian food - unless that "beef" was actually hedgehog or mongoose, in which case you should have went with the BBQ. At least I think hedgehog and mongoose are considered "lean").
2) A vegetable - did you pick the flavorless cabbage (assuming you like cabbage), one of the many starches posing as veggies, the mayo-based coleslaw from a can? No? Well, you could just eat a salad, she says. The ones you really need to not eat much because you'll die? Yeah. Those salads.
3) A starch - those are plentiful, in fact they comprise about 75% of the food in your kitchen. You never realized there were 476 ways to prepare a potato, but someone in your kitchen does!
After a quasi-scolding about your food choices, you choke down your cold pizza. Wait - where are you going? Uh-uh. You're staying in your room all day. You *might* be able to get your escort to take you to another room or even outside later, but it's raining outside. It's always raining. It's like living in Seattle or London. But crappier.
Next: on the afternoon edition of "So, How Are You Doing? (Redux)," you're going to try to write an e-mail, or a heartfelt letter to a loved one, or watch a 44 minute television episode. This will require a few uninterrupted thoughts and a bit of concentration. Brace yourself.
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