Lead Me To the Water

"He supposed that even in Hell people got an occasional sip of water , if only so they could appreciate the full horror of unrequited thirst when it set in again."  - Stephen King (Full Dark, No Stars)

Soldiers, service personnel, nurses, sports team members, and band members all develop a common bond over time that indelibly commits them one to another for a lifetime. In the hospital, regardless of whether the patient is a transplant recipient or TAH patient we are tied by a bond stronger than blood. Stronger than memories of war or impossible victories. The bond of which I speak is...thirst. Insatiable, soul sucking thirst. Much like this guy:

Many surgeries require the patient to be pumped full of saline, so when you hit recovery, you're generally carrying several pounds of fluid you didn't start with. If you were already fluid overloaded when you went in (and we all are), it compounds the problem of recovery. So the docs want to get the fluid out, and they want to do so aggressively. This means a fluid restriction. Typically in the realm of 1.5 to 2 liters per day. Imagine one and a half to two Gatorade bottles. I do. Often. Mmmmmm....Gatordade....let's all stop and consider the savory, wet, thirst quenching glory that is Gatorade while you ponder how little fluid that is in a day. 

Note all the cold, cold, wet ice that will melt into water. Water that someone could drink. Right. Out Of. The. Bucket.

So it's pretty easy to drink 3 liters or more in a day without even thinking about it. 2 liters is do-able until you consider that everything counts. Everything. Fluid used to swallow pills. Soup. Popsicles. Ice chips. Everything. If you split the fluid allowance into three parts, it's just enough for a decent drink at all three meals. Until you add all the pills in. Plus, most of us grab something between meals 3-4 times a day. 

I don't embrace much of Southern culture, but I'm from the South, ya'll. And in the South we drink tea. Lipton iced tea. Sweetened Lipton iced tea. And lots of it. If a restaurant in the south doesn't have sweet tea, it doesn't last long. Babies drink it in their bottles. Cold brewed, mounds of sugar, in a tall clear glass full up with ice cubes.

The agony of trying to get through a sleepless night without any fluid is one of my most difficult challenges. When I hang out with other heart patients these days, I guarantee thirst is pretty much the primary, and often only, topic of conversation. We've all learned which nurses will actually not count Freeze Pops as part of your intake. Let's stop for a moment and remeber the nostalgic, corn syrup based, fruit flavored icy pop that we all know and love. Think of the small bits of frozen tubular ice slowly melting on your tongue, running down the back of your throat. The burning sensation that often follows. I know I am. 

Orange and grape are the best, but any flavor will do really. They're all cold. They all melt. They are all glorious.

Some of you no doubt take the Fla-Vor-Ices in your life for granted. You just sit there in your house, with your freezer filled to the brim with all manner of ice cream, popcicles, and fruit pops. You grab one and chomp it down, casually disposing of the package, and go on with your oh-so-perfect lives. 

Not us. 

A Fla-Vor-Ice is a 120oz. treasure of fluid intake. We snap off 2 inch pieces, slowly, one at a time, and let it sit on the tongue, so there is a maximum amount of salivating and mouth wet-ness. Once the ice itself is gone, there is still some leftover juice in the package. Corn juice, but liquid nonetheless. We don't throw that away. We suck until our eyes are going to pop out, then inflate the wrapper by blowing into it, causing precious drops of fluid to run down the tube onto our parched tongue. When it is gone, we are sad. 

Next we turn to hard candy. We don't crunch it, we don't chew it. We tuck it into our cheek or under our tongue, trying to coax as much saliva out of our glands as possible with these little pieces of Jolly Rancher heaven. Let's stop to consider how sweet, how tangy, how wonderfully sour and juicy these little pleasure nuggets are. I know I will. 

Generally, nurses don't count candy as fluid, so we can go through a bag of these in a day. 

If we get a drink with ice in it, God help you if you dump the ice once the drink is gone. I've taken nurses to task over the 30 mls of ice in the bottom of my juice glass that better be credited back to me. I will count ice cubes if I have to. Don't push me. I'm thirsty. 

One of the best things to happen in the midst of this is that I realized I can drink a Mountain Dew without worrying about the caffeine any more. I'm having some blood sugar issues, so it's Diet, but Mountain Dew nonetheless. Let's pause for a moment and reflect on the orange-juicy, fizzy, un-natural green concoction that is Mountain Dew. Imagine the bouquet of orange-lime syrup, the burn of the chemical aberration on your tongue. The juicy, fruity long finish that lingers until the belching starts. I know I am. 

Note the frozen water gently cradling the sweating can of diabetes inducing goodness. Not only will the ice melt into drinkable water, but the sweat on the can indicates that the heavenly libation within is brain-freezing cold, the way God intended Mountain Dew to be consumed. If you drink it fast enough, you could even lick the lingering condensation from the can. And the nurses probably wouldn't even count it. I know the can is probably unspeakably dirty, but when you can feel each individual pore of your tongue stretching out for fluid like a bloodhound at the end of a leash, it really doesn't matter any more. 

The news of a raised or increased fluid restriction among the heart patient population spreads through the HVIC here quicker than strep throat at a daycare center. It is guaranteed to be the next topic of conversation when we see each other outside or in the halls. 

Patient A: "I heard they raised your fluid restriction! How much!"

Patient B: "250 mls! It's, like, the happiest day of my life!"

Patient A: "A whole 250! Wow! That's like one of those little apple juice cups - the whole thing!"

Patient B: "I know! I'm trying to decide if I want to blow it on some juice, or maybe half a can of Ginger Ale later this afternoon. I really want to savor it, ya know?" 

Patient A: "Congratulations, man. This day will be long remembered. Cherish it."

Patient B: "Oh, I'm going to take pictures."

My fluid restriction was raised Saturday from 1500 to 1750. There was much rejoicing. I splurged on a cherry Mountain Dew that I nursed for two whole days. 

I find myself waking up in the night to look up juicing recipes online, price Sonic style ice-makers, and ordering fruit infusion water pitchers and Popsicle molds on Amazon for when I get home (btw, Christie: there are some packages coming in the mail). I dream about my little box of assorted tea leaves and chai mixes. Tea brewing in the hot sun in a glass pitcher. I even lingered on a football game the other day in hopes someone would pour one of those big Gatorade coolers over the coaches head (a perfectly horrible and disgraceful waste of Gatorade that could be used to help thirsty people everywhere). 

That is 5 WHOLE GALLONS of Gatorade Citrus Cooler, a flavor that first appeared in 1995 alongside the traditional Lemon Lime and Orange flavors. It was discontinued in the mid 00's but was brought back earlier this year to celebrate Gatorade's 50th anniversary. I know because I looked it up at 3:30 am this morning while waiting for a nurse to bring back a lime Fla-Vor-Ice. The flavor is a mix of orange, lime, and diabetes and is delicious served warm or cold. Just so long as it's served, instead of poured on the ground. Morons.

So wherever you are today, whatever you are doing, take a moment to consider the ready availability of your bottled water, your artificially flavored fruit drink, your Frappicino, your Lemon Lime Sonic Slush that you snagged (or should have) during Happy Hour for 60 cents. Caress its container and savor each small sip. Regardless of your drinking preference, enjoy the wetness on your tongue. the revived brain function, and the immediate satisfaction that comes from living in a society where fluid is available at every retail store, gas station, and soccer game in copious amounts at a relatively low price. Enjoy every drop. And if...IF you just happen to have any left over - even a little watered down 20 ml in the bottom of your bottle or cup, please, please bring it to me in room 1100 in the HVIC of Penn State Hershey Med Center, 100 University Drive, Hershey PA. Don't let the nurses see you.

Now The Blog Title Doesn't Work Anymore...

Cyborg Dave, reporting in from Penn State at Hershey, PA. I've had a lot of very strange experiences in my life, but they all pale in comparison to this.

So the first two days after admission, the docs tinkered with my blood, ran dozens of tests, and prepped me for surgery. When the day finally came there was lots of poking prodding, and after a tearful and hopeful "see ya in a minute" to Christie, the boys, and my parents, I was off to the OR.

First things first - if someone ever says to you, "we're going to insert an A-line," do absolutely everything you can to get as far away as quickly as possible. I didn't know what an A-line was and it will probably haunt me for the rest of my life now that I've had one. Turns out, you've got this huge artery in the underside of your wrist that can be used to quickly administer meds, blood, etc. in emergent situations. And the ink pen sized needle used to access must be inserted while you're awake. I should have known this was going to hurt when they started strapping my left hand to a board and giving me small shots of local anesthetic. The actual insertion only lasted a second, but that one second contained several lifetimes worth of agonizing pain that doesn't even begin to compare with the pain of recovering from the surgery. Good thing they hit it the first time because if they'd tried it twice, I very likely would have called this whole thing off. My threshold for pain has grown relatively high in recent years, but this was maddening, screaming pain unlike anything I've ever experienced. Thankfully it was over quickly.

That was honestly the worst part. The sedation was deep, no time passed, and I woke up to the familiar sound of the TAH (ka-woosh, ka-woosh, ka-woosh), which told me immediately that all was well. A few faces swam in and out of focus - Tommy, the nurse that's cheered me on for the last year or so, John "the Mudgeman" Mudge, a fellow HCMer until his transplant a year ago. Christie, my parents, a few more nurses. The first few hours were blurry as expected, and the intubation tube not as bad as I had dreaded. As soon as I was moderately lucid I was able to focus hard on my breathing so they would pull that thing out - which they did after a few hours. Then blessed sleep.

I really don't remember many details from the last few weeks - I was on narcotics for the first 8 days, and being such a cheap date, they lingered in my system for about 2 weeks. It's only in the last few days that I've felt like myself mentally, able to think clearly, and have a conversation without babbling a lot.

Currently I'm tied to a large machine that houses the TAH. Since I've been stable on it for a few days now, it looks like I'll get my portable version in the backpack hooked up tomorrow. This has been a challenge because I'm used to being independent, even while in the hospital. I've had to page the nurses for everything from dropping something, to needing a drink, to going to the bathroom. Bed to chair - chair to bed. I walk around the unit a few times a day, and enjoy being able to go outside with Perry and eat Freeze Pops in the sun. He's doing better too, though he has a long road ahead with lots of rehab. But we're getting each other through this.

With my backpack, I'll be able to walk around the hospital (accompanied by a nurse), to the caf, outside, and move around my room on my own. Blessed independence. In the meantime, Christie has been faithful as always to bring me good food, hard candy, entertainment, and keep my cooler stocked with sports drinks. I've spent a lot of time watching Beatles documentaries and cooking shows, reading Pratchett when I'm lucid, and napping.

We also start the education part of the TAH tomorrow. Family and a few friends have to go through 5 days of 2 hour classes to learn all about batteries, alarms, changing drivers, changing canulas, power conversion, and all things to do with making sure I do my part to keep the TAH working properly. I can't express how humbled I am that people will take that much time out of their lives for this.

Rich is more eager than anyone to learn it all. I don't understand the whole "be a parent, not a friend" thing people have with their kids - I can't help but be this guy's friend, because he treats me like one. He's faithful to me not just because he's my kid, but because we genuinely like each other. I'm so glad our relationship has developed in this direction because I literally couldn't have survived the last 2 years without him voluntarily taking on a role as secondary caregiver (behind Christie) in my daily life. I love my son, but I also love "that guy" in a whole different way that makes me proud to call him my friend. Anyone should be so lucky to have such a friend.

I can't say much about Christie here without getting really sappy. I feel like we've fought this war together, in the privacy of our own lives, and the experiences are too personal to share. Besides, I want to keep them - we earned them, and we will lock them away along with all the things that have turned our friendship into a happy marriage over many years. I would like to say that I would have been so faithful and tireless in her position, but I fear I wouldn't - I don't think I'm that strong. I doubt anyone is.

I'll post more in the days ahead. Just wanted to say hello, thanks again for all the love, prayers, and support. I'm feeling better everyday, doing more, and slowly realizing what an incredible opportunity I've been given to extend my life once again. There's another big surgery in my future, but for now, I'm going to just relax and enjoy the absence of chest pain, the ability to sleep through the night, eat a meal without nausea, and not having to push myself just to do the simple things.

The Betrayal

Christie (the wife) posting in Dave's stead.

The betrayal has started.

No, we have not been betrayed, we are the betrayers (Is that even a word?). We have betrayed one of the most loyal warriors in this long battle we are in the midst of. Confused? Welcome to my whirlwind of thoughts. 

Dave and I were talking just last week, we have discussed the betrayal before and had resigned ourselves to the inevitability of it when we first had to discuss a heart transplant. 

Dave's heart isn't the enemy here, it has been the most tenacious warrior and has saved him upon many occasions. The enemy is HCM, it is the disease that invaded his heart and created a mutiny among the individual cells of his heart muscle tissue. There were several occasions when he should have been bed ridden, or even dead, and the doctors/ nurses/ radiology techs were amazed at how his heart adjusted to keep him going. His mitral valve is malformed. "Not good", you say. Actually, he would have dropped dead from an obstruction years ago if his heart had not formed this "defect." Dave walked around with blood pressures that would have had most people bedridden for years. I can't tell you how many times I have heard a nurse say, "You WALKED in here?!?!" or "No, DO NOT GET UP!!!" Most people with HCM have to take blood pressure medications and medications to help the heart contract harder. Dave has never had high blood pressure, and they have had to be very careful to not treat his heart like they would every other heart with the same issues. His heart was already controlling the blood pressure and contracting as hard as it possibly could. His cardiologist at Tufts in Boston, the famous Dr. Marron, explained to us that his heart and body had made every adjustment it could to deal with the disease that was taking it over. That is why Dave looked healthy for years and could still function on some "normal" level well beyond the time when most HCMers are home bound or chair bound.

You see, most people say: 

• "Oh, I bet you'll be glad to be rid of that heart." 
• "That heart has caused you nothing but trouble." 
• "Good riddance, to that troublemaker."
• "I bet you are looking forward to getting rid of that bad heart."

Maybe that is how most people with heart failure, no matter what the type, feels. However, it is not how we have felt. You may think we are silly, but we owe the determination, the grit, the steadfastness of this heart a great debt. We feel guilty, we feel like we have betrayed a fellow warrior in this fight. Will it be worth the price of betrayal? Will his body that has adjusted so much to his hearts capabilities be able to readjust to this device? Will the body instead recognize it as a foreigner, and something that must be fought against? We hope the body will accept the change and see the TAH (Total Artificial Heart) as what it is, our last line of defense before death. 

Dave and I decided the betrayal must be, that the doctors were right and his heart has simply worn itself out fighting this battle. A scene from "Firefly" keeps popping into my head. (Yes, Firefly. I am Dave's wife after all!)  It is when they are running from the Reavers and Jane is shot in the leg, being pulled back towards the Reavers. He looks at Mal and says, "Don't let them take me alive, Mal.... Don't shoot me FIRST!" (The last as Mal is aiming his gun at the rope that was pulling Jane back.) Jane thought he was going to be shot instead of saved, given over to the enemy too soon, before he had been beaten. -Is that what we are doing? Are we giving up on this fierce warrior before he has given his all? Are we truly betraying our ally? Can he be saved? This brave warrior is in pain everyday, hurts with every beat, and is dying at a more progressive rate than before. This progression is causing his heart to take the rest of the crew with it. Jane was holding onto the crews transport and they were being drawn into the enemies fold right along with him. That is what is happening now, the rest of Dave's organs are starting to go downhill. I don't know if I believe in euthanasia as a whole, but we have decided that it is a "mercy killing" and is the best chance we have of winning the war. We do feel as if we have lost this battle, but the war is not over and our sites are set to winning the whole, even if we have to give up a part.

Huh, a part, not just any part, but Daves' heart, such a precious part it is. His mother was the first to hear this heart, while she was pregnant. This is the heart that beat in his chest the first time he looked my way and smiled. This is the heart beat that gave me comfort as I lay my head on his chest and cried both times we lost a child. This is the heart that beat and made me feel warm and fuzzy during so many slow dances from my Prom to our living room. This is the heart that soothed our sons to sleep on his chest as infants. So many sleepless nights, laying awake, listening to that heart and having the comfort it gave. He was still with us, at least for that moment, that this warrior was fighting the good fight and beating on with every muscle cell that had not been taken over by the mutiny HCM had caused. 

Farewell old friend Please forgive us all, we do not betray you lightly. We will go on in your stead, we will continue to fight...our eyes remain fixed up towards the north as the sun rises, we are looking towards that white ride that is bringing reinforcements and with it a new day!!!

Of Course, we have the amazing team here at Penn Sate Hershey Med Center:

"Well, look at this! Appears we got here just in the nick of time. What does that make us?" -Mal

"Big damn heroes, sir!"-Zoey

"Ain't we just."

      -and they are, to us they are.

Thanks for reading during Dave's reprieve, I appreciate your support during this long war.

                                                                                                  -Dave's stressed and loving wife,

                                                                                                    Christie

That's No Moon....That's A Space Station

"I have a bad feeling about this..."

 Sir Alec Guiness really sells the dread that settles over our heroes when the Millennium Falcon emerges from hyper-space to find Alderaan blown to bits, and themselves being dragged toward what they now realize (too late) is an enormous spherical space station. His delivery of that line - "That's no moon..." and the look on his face is one of the best moments in movie history. The five second transition from mild anxiety to heart-stopping fear told us all we needed to know about the Death Star. You did not want to go there. His fear spreads quickly to Luke, Han, and Chewie as they try to pull away, but they've already been caught in the giant weapon's tractor beam. See, Guiness - Obi-Wan Kenobi - is a *Jedi.* If something scares him, how much more frightened should everyone else be?

I'm no Jedi (well, not that YOU know of). I've been preparing for so long for a transplant surgery that even though there was a LOT of initial anxiety, I've squared with the idea over the years and honestly don't feel very apprehensive about it anymore. The potential complications that follow? Yes. But not the actual surgery itself. The guys here at Penn State can do those with both eyes closed while playing a few rounds of Candy Crush on the side. So you can imagine how mild anxiety turned to dread when we found out about the need for an artificial implant. This means two major surgeries instead of just one before we're out of the woods (Someone needs to start chopping trees, by the way, the overgrowth is out of control). Again, I'm not so much apprehensive about the surgery itself, but by the physical and logistical complications that follow. I wish I could say the same for my wife, kids, and friends. Like Obi-Wan, my mild anxiety has turned to dread, and spread quickly to those around me. We are caught in this inexorable pull toward danger and there is no Han Solo among us to find some way of slowing it down. We don't even have any smuggling holds to hide in. What I'm getting at here is I really want a lightsaber or one of those cool laser pistols Han carries on his hip.

What were we talking about?

One of the harder parts of this is relaying the news to people we love, because we know as we do so, it pitches them headlong into the same chasm of anxiety and dread that we are battling. I feel like in some way I'm doing harm to them. Several months ago, I got news that Tim Anthony, a friend and idol of mine, died of liver cancer. Far separated by geography, I had no way of noticing my friend was ill because we only communicated via Facebook. Tim chose not to reveal his illness to anyone but his immediate family. I totally get that. I don't want to cause anyone distress, and the constant looks of concern, the tears, the offers for help...I know it all means they care for me but I wish there was no need for any of it at all. I'm self-conscious that by sharing my situation with others, it might be construed as drawing attention to myself, or seeking pity. My life was so public for so long between being a pastor and musician in my 20's and 30's that it's hard for me to be objective about how much information is too much to share. I hope I'm getting it right.

Today is my last day at home with my family. My parents are here, which has really helped to distract us from the dwindling time we have together. We've talked, laughed, cried, eaten good food, reminisced. Christie and Rich are more quiet than usual. Brennan is mellow as usual, but I can tell he's dwelling on it too. Should we be doing something more significant than eating at a nice restaurant today? Why does it feel like giving up to take family pictures at this eleventh hour? As if there won't be another opportunity. Who have I not talked to, or told I love them, or settled with? I've spent the two weeks in a non-stop blitz trying to shore up financial matters, plan for the next homeschool year for the boys, set up home repairs, maintenance vehicles, put some things on hold, finish up projects, and in general, prepare to be out of the world for four months. There's no real way to prepare for it and I can't even get my brain wrapped around the idea.

See, I've had no time to prepare for this. I've been ready to accept a donor heart and deal with the subsequent and common problems of rejection, med tweaks, unexpected limitations, as well as the freedom to do so much more physically than before. An artificial heart is a new idea for me - something that would have been unthinkable even 18 months ago. I've held out long enough for the technology to save me, but psychologically, I don't know how I feel about having a machine instead of a heart, or my life being dependent on an external pump that requires battery changes every hour or so. I'll feel so much better, but I'll be more limited than I would if I had a real heart (totally singing the Tin Man song in my head right now..."If I only had a heart...." Good song). I've not had time to process any of this.

The thing that bothers me the most is the separation from my family. Even over the last two years when I've been admitted to the hospital for weeks at a time, the room will accommodate all four of us and a card table. We can eat together (which Christie makes happen pretty much every night she's not working), play games, read, catch up on school work and each others lives in relative comfort. It's not home, but Christie has made it as close as it can get every time. It's the thing that has warded off the loneliness and sustained me for those long stretches. Now we're faced with the reality of a room crammed with medical equipment and the machines that will keep me alive for the first few weeks. There is no room for a family meal, or a game board. The official protocol only allows two other people in the room at a time. Will they flex this for us, or does this mean we won't all stand in the same room together for four months? There is a physical ripping out of the heart, but this metaphorical one troubles me so much more.

Christie and I had been married about three years when we both quit conventional jobs so we could run a business together. We were home all day together, worked at night together, traveled to gigs together. We don't get sick of each other. We tried to maintain this dynamic as much as possible over the years. When Christie was a travel nurse, we traveled together. Our kids are homeschooled. We spend every moment, day and night together, unless they're with friends. We're a family that's used to being in each others lives every hour. There's never a need to "catch up" with what's happening in the kids lives. Christie works three night shifts in a row every week, and when she's done, we spend the other three and a half doing things, playing, working, talking, learning. Everyone needs alone time, but we don't need much because we actually *like* each other. There's nowhere else I'd rather be than sitting across a mess of D&D dice with the boys, or in the kitchen with Christie, or on the road to somewhere we've never been, listening to our favorite music. The thought of being apart for so long is my Death Star. I dread it, and I fear I'll crack or give in to despair because of it.

I wish I had something more hopeful to say at the end of this post. I guess I can say that I'm ready for the surgery, that I'm not afraid of it, that we have made the very best decisions and controlled every single aspect of this that we can - down to having the #1 device surgeon on the planet doing the procedure. None of that was a happy accident - it came through much bloodshed, tears, expense, and sacrifice. Hard decisions and gut-wrenching changes that had to happen to give me the best shot at surviving. The rest is out of my hands, and I'm at peace with that. I truly believe, in the words of Neil Peart (Rush) that we have to "get out in the world and take our chances [because] fate is just the weight of circumstances." There is a biological cause and effect at work here and that comforts me because it means there's nothing else I can do at this point but let the thing take its course. I know some of my readers will protest that we must pray and have faith. I don't disagree with that, but I've chronicled on this blog my views on how those things relate to my situation exhaustively (HERE and HERE), so I won't burden you with it again. I do appreciate all the prayers, thoughts, and good vibes everyone is sending our way - knowing we have such a huge base of support during this means so much. It gives us strength and comfort as well.

Thanks for reading. I plan to sneak in, disable the tractor beam, and make a daring escape. Death Star or no, the moral of the story is that no matter how afraid or filled with dread, even the biggest threats can be overcome. With a well-placed proton torpedo and the Force. (This analogy may be breaking down, so I'll leave it there)

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.

Point A to Point B

The universe is like Google Maps in two ways:

1) There are multiple routes to get from Point A to Point B. 
2) If one of those routes involves toll roads, wrecks involving bio-chemical spills and eighteen wheelers, or takes you through stretches of forgotten countryside with no gas stations for hours, it will definitely choose that route for me.

After living with the knowledge that I need a heart transplant for over five years, we learned that what television and movies have painted as a simple 1 to 1 equation (need a heart = get a heart) involved so much more - rare disease symptoms, distribution zones, blood types, anti-body types, donor to candidate ratio, body size, heart size, age, gender, varying protocols and interpretation of the guidelines between transplant programs, an organization called UNOS, and organization called OPTN, and organization called the HCMA, confusion about the relationship - or lack thereof - between those, medical/corporate bureaucracy, well-intentioned, yet harshly narrow eligibility criteria, the effect of heart medications on the rest of the organs, the term "viable risk," and of course, the unending enigma of how to concisely wrap all of these things up in an answer to satisfy the expectant and hopeful question, "So how are you doing?"

To understand "how I'm doing," it's important for you to understand this Big Thing; we've spent the majority of our time over the last five years moving our family around, and the last 17 years making sacrifices and adjustments to our lives to get to "how I'm doing" today.

Today we finally arrived at a crossroads on this journey where the actual, physical heart failure has overshadowed the paperwork, and healthcare bureaucracy, and the soul-crushing financial pressure it brings to bear.

I wish this post was to inform all of you who have loved and supported us throughout this journey that it was nearing its climax - that I was receiving a heart. That's the end all of the whole thing in many of your minds. We have to look farther down the road than that, years and years. But I get it - without being exposed to all the gory details I've hinted at above, that is the thing you *should* be fixated on. I've detailed elsewhere why a heart transplant is more a trading of medical problems one for the other than a permanent solution to one, so I won't go into it again here. But I know most of you understand that it's far more complicated than you realize, and I'm so thankful for that objectivity in our conversations and e-mails.

Who knew it could become even more complicated? (ME! ME! OO! OO! PICK ME!) (I'm typing with my right hand so I can wave my left in the air right now. Our dog thinks I've lost my mind).

If you're looking for a paragraph sans the jargon to copy and paste on Facebook, your blog, or chain e-mail, this is it:

We learned this week that after 17 years of progressing heart failure, my other organs are finally starting to complain. My kidney and liver "numbers" have been elevated for some time. This causes a great deal of alarm among my cadiac/transplant team because once these organs deteriorate to a certain point, they render you ineligible for a new heart. We all agree that it's time to do something. Unfortunately, we can't order a new heart from the pharmacy. At least not a real one. In my particular case, the only real solution is a Total Artificial Heart (TAH). So within the next three weeks I will be undergoing surgery to replace my failing heart with this device. According to the surgeon, the procedure is more complicated, risky, and longer surgery than an actual heart transplant. I'm expected to live at the hospital from 3-5 months following the procedure. As you can imagine, this part is not good news for a family with young children in the middle of a long, expensive, and tiring journey.

The upside is that when I do go home, I will finally be rid of my disease (Hypertrophic Cardiomyopathy - HCM). My existing heart will be removed, literally donated to science, and I will be implanted with the TAH, which looks like this:

It will be attached to a portion of my atriums that are left behind. I'll explain all the technical stuff in a later post, but those two tubes at the bottom of the picture will run down through the inside of my chest, out of an incision site in my stomach near the belly button, and connect to "the freedom pump." I will carry this 20 lb. pump in a backpack or shoulder bag everywhere I go, 24/7. It will do the job of circulating blood and oxygen just like my current heart - except it won't flutter, hurt, and should allow me to tie my shoes or bend over or even workout a little without leaving me winded and fatigued. This should also preserve my kidneys and liver, keeping me viable as a heart transplant candidate. In fact, it should allow me to do many, many things that I can't do now. In tomorrow's post, I will get more into those things, and catch everyone up on the last few months, which, honestly have been gut-wrenching in terms of my health and limitations.

The other advantage is that it allows me to be listed as a "status 1B"  patient on the list while I'm at home - a higher priority than I am now. The only time I shift to the top of the list right now is when I'm actually in the hospital for several weeks attached by my neck to a Swans catheter. Those days are over, and good riddance. Nearly 40% of heart recipients are people at 1B status - meaning the odds of me getting an actual heart quicker are actually better in some ways than they are now. In some ways it's a wash. Everything has a price I guess. It may be hard to imagine for you, but my quality of life should improve exponentially. I want that bad.

PLEASE HEAR THIS - this is not a permanent fix. People can live years on TAH's (artificials), but it is difficult. No showers, no being alone, ever, ever, ever in case there's an equipment problem, constant tinkering with blood pressure medications to keep the blood flow safe and even, and lugging batteries around. But I actually feel good about dealing with all of that in favor of continuing the way I have for the last six to eight months. More on that tomorrow.

It's shocking news. It sounds drastic. But NOT doing this means certain, multiple organ failure - and I would never get a new heart.  I'm more concerned about the logistics and finances for Christie and the kids than I am the surgery or the medical/physical aspect of the whole thing. Since this news has started getting around Christie's work place and our family, we've been asked many times what people can do to help. I'll get into that later. For now, the bullet points are:

* Heart failure is endangering my other organs and my current heart has to go.
* The temporary solution is the TAH (total artificial heart) and freedom pump (the backpack).
* It should increase my quality and quantity of life over my current heart.
* We have a lot of phone calls to make, e-mails to send, and favors to call in if we're going to survive this huge step in one piece.
* I will still need a real heart ASAP, and this device should keep me in good shape to get one.
* The transplant team, my docs, and my fellow transplant patients are determined to see us through this no matter what they have to do - and they're a very stubborn bunch.
 
Thanks for reading. The last 48 hours have been filled with anger, relief, fear, hope, tears, hysterical laughter, tear-inducing words from my cardiac team and the support group of nurses and patients they've gathered around us, and a lot of thinking about fairness, randomness, God, Darwin, and what effect this will have on my permission to eat copious amounts of seafood.

I will talk to you all in the next few days when we've had more time to process and plan. We need a day or two to acclimate, be a family after almost three weeks apart, and just be. 

Love you all.