Someone Broke My Ribs...

So this post is more for the benefit of those with TAH's in their future, or for those who are morbidly fascinated with open wounds, blood, bile, and the gamut of aches and pains. Honestly, this is the kind of post I've been putting off, because it's probably a little more personal than I'm comfortable with. But when I was preparing myself for surgery, I asked Perry a million questions. I wanted to see everything. I even wanted to touch everything. You probably do too.

Fair warning: I'm going to include pictures and a few videos in this post, and some of them are not for the squeamish. But if you're about to undergo this procedure, there's nowhere else on the web to get a first hand look at the process. The Syncardia website makes the TAH implant look like a day at the carnival. The doctors don't tell you all the things the nurses will have to do post-op, or really what to expect physically once you're home. These are all things I wish I'd known ahead of time, because in all seriousness, if Christie were not a nurse, I'm not sure how I would have handled all this. Not to mention that she works at the hospital where the procedure was done and knows how the system works, and how to get things done.

There are two major issues I want to address over the next few days: 
1) The actual physicality of the procedure, along with post-op and daily living challenges, and 
2) Navigating the murky waters of hospital protocols once you're home.

Let's start with #1

The Procedure

Before surgery, a nurse or aide will shave everything from your nostrils to your nethers and in the words of Perry - "...and I mean everything." Haircuts are not uncommon. Surgeons don't like hair in their OR's and you shouldn't either. This is significant because about 2-3 days later, it starts to itch. This is particularly a problem because you are covered in wound dressings, taped up in about five different places, and possibly taking pain meds that make you itch even more. Lotions are prohibited because of healing surgical sites and the risk of infection. The solution for this? Suffer. It will be over in a day or two and hopefully the pain meds take the edge off. You'll be asleep most of the time anyway.

In the OR, you will have an "A line" placed. Basically, an IV line with a needle the size of a pencil inserted into the very most tender, mommy-loving, part of your wrist - that part that you check to see if the bottled milk is too hot for baby because it's the most sensitive part? Yeah, right there. For me, this was the absolute worst part of the whole ordeal, and it only lasted about four seconds. I'm just being straight here because you need to be mentally prepared. I have no words to describe the excruciating, mind-numbing, primal pain of the A-line. It was all the pain in the universe packed into a tight four seconds, but then it was over. They actually strap your arm down and give you 4-5 local anesthetic shots in your palm and arm to lessen the pain of the IV - probably because people would pass out without that mercy. I let out a blood-curdling, I'm-being-murdered-slowly-with-an-axe- scream - and the docs said it was pretty run-of-the-mill for an A-line placement. I don't remember much else after that.

You awake with a tube down your throat and not much sensation anywhere else. That part wasn't as bad as I imagined - just relax and breathe with it. When I first came to, I listened for the familiar sound of the TAH that I knew from being around Perry. The thumping is a pretty good sign that everything went well. Fog for about a few hours, then the realization that you're rigged up much like Neo in The Matrix. The sooner you start breathing on your own the sooner the tube comes out. The nurses will ask you to cough and take a few deep breaths with it. Once you can, out it comes. A little burning, but not bad.

Five chest tubes protruding from the lower edge of the rib cage, two tubes feeding air to the artificial heart at on the left side of the abdomen, the afore-mentioned A-line, and if you're very lucky, a Picc line in your right bicep that was placed with little ceremony or pain prior to the surgery. More on the 

wonders of the Picc line in a the next post.

About 2-3 hours post-op

Pic line. I still have this today, though most people can't keep them sterile for that long and they have to be removed after about a month. My veins are trashed from continuous lab draws pre-surgery, so the nurses can now draw blood or administer meds through this. Not sure how long I'll be able to keep it clean and safe, but it's already saved me nearly 50 needle sticks (probably more, since no one can really get a vein on the first or second try)

I could actually feel the contours of the chest tubes coiled inside my chest cavity - there being lots of empty space now where my over-sized heart had been. They didn't hurt, they were just uncomfortable, making it difficult to draw deep breaths. This was disturbing because breathing deep is one of the things I looked forward to the most after the hellish shortness of breath over the last few years. All was well by the third day and out they came:

This only burned a little, but the pain was immediately rewarded by glorious oxygen - deep, full breaths. I could feel the coils unwinding as they came out - a little odd feeling, but not very painful at all. Deep breathing made me suddenly aware that someone had broken my ribs. Bone pain is awful, and Christie made sure the nurses stayed on top of my pain meds accordingly. The incision in my chest was healing nicely, but the skin is incredibly tight, and breathing deep definitely makes you aware of it. Nevertheless, being free of the chest tubes allowed me to start moving from the bed to the chair and back with assistance, and trying to use the bathroom. It's all important to get the digestive system moving - a sure sign that the body is recovering nicely and the plumbing is working. This took quite a few days for me as anesthetic tends to slow things down. Trips to the chair, bed, or bathroom are tedious - I was connected by the tubes in my abdomen to the Companion 2. This is the machine that accompanied me everywhere I went. The bathroom, walks around the halls, etc.

        

I had to be stable on the Companion 2 before I could be switched over the Freedom Driver:

(For videos on how the Freedom Driver works, go to Syncardia.com )

People will want to visit you during these first few days, but the trouble for me was that it was an incredible effort just to stay awake. Even talking was exhausting, but your family and friends will be excited to see you as soon as they can. It's probably a good idea to discuss this before hand with everyone and have a plan - I wasn't truly up to company until about 2-3 weeks post-op because every action is a huge expense of energy, there's a lot of digestive uncertainty, and privacy goes a long way toward helping you recover at a good pace. A trip from the bed to the chair, or the bathroom and back required a 3-4 hour nap to recover. It took me about 4-5 weeks to be independent and strong enough to consider switching to the freedom driver, and by then, I was more than happy to see friends and have people in the room. Obviously there are people you'll want to see as soon as possible, just be warned that you will be way more knocked out than you expect, and keeping you eyes open for any length of time requires a supreme effort those first few weeks.

Once I was stable on the Freedom Driver, and family and friends had undergone the week of training, I was discharged. Though I had a little scare and had to be re-admitted a week later, I only stayed another six days. Then the real fun started. 

The immediate challenge was (and is) making sure the canula dressing stays nice and clean. This means weekly dressing changes, and again, I'm so fortunate that Christie has experience with these. I generally "shower" once a week, followed by a canula dressing change, and hopefully, a pic line dressing change. These don't always line up due to life and Christie's ever-changing schedule, but we get pretty close. 

Showers - most people take sink baths and use lots of powder and lotion. We've actually devised a way of waterproofing the canula and pic line dressing with water shields and plastic bags. This allows me to at least stand in the shower and use the spray shower head to wash off. I don't stand directly underneath the water, but I can at least get wet, use a real washcloth and soap, and lean over far enough to wash my hair. Note that this whole time, the actual backpack with the pump sits on a chair outside the shower. It makes a bit of a wet mess, but we're getting better at it. This generally takes about 30 minutes. Then I dry off quickly and move to the bedroom where I lay down on the bed for the dressing changes. Rich and Christie work together to create a sterile space, then prep the various tools and materials for the change. They gingerly remove the dressing, because if too much hair has grown under the bandages, it becomes a very unprofessional wax job. They use chloro-prep applicators to remove any bile build-up, sanitize the area around and under the tubes, then carefully shave the whole area. This can be a bit tricky because there are raw spots and stitches to avoid. It often burns and it definitely freaks me out to have everything exposed like that for half an hour. When everything is clean, they use a skin prep solution to coat the area where the bandages will go. I'm violently allergic to adhesive (as it turns out) and without this barrier in place, I develop nasty, oozing blisters that get infected, raise my white blood cell count, and potentially landing me in the hospital. Once it dries, the bandages are carefully applied, followed by an abdominal binder as an added layer of protection. The same procedure is used to replace the Picc line dressing, though I sometimes have that done by the nurse at the hospital after my Wednesday lab draws. This all takes anywhere from an thirty to forty-five minutes, and creates quite a mess.

So much bio waste, so little time

Not as painful as it looks, just always in the way. But a clean dressing makes you feel a little more human again.

It holds me for the week, but I have to be careful not to get too sweaty or overheated between shower days or everything can get really manky.

Beyond this are the meds. Be prepared to spend around $200 a month, even with good insurance. This is for meds, supplies, binders, and might cost more depending on your coverage and need for a home health nurse. We used one for a few weks but it became cost prohibitive, so now we make a trip or two a week to the anti-coagulation clinic for my blood checks. Again - be prepared to have someone drive you if you don't use home health.

Every two weeks I'll load these guys up - too many pills to remember, so I have a list. Anyone going into TAH or transplant surgery MUST have something like this that is pedantically organized down to the hour so you don't miss meds. It could literally be a life or death issue. Spend the $10 and get good med organizer. 

Speaking of driving, you can't. Period. I know some of my readers are HCMers like I was (WAS...feels so good to use that tense) and are used to doing small things like light trips to the grocery store, or taking the kids places, even running up the street to grab take-out. That's over. Not only can you not go anywhere by yourself, you can't be left alone at home either - meaning that the other members of the household can't go anywhere without you. One of the ways I used to conserve energy was staying home for things I didn't need to attend: dropping the kids off at book club, dropping off a package, a quick vet appointment. I'm in attendance for all of those things now because if they're going, I have to go. This isn't so much a burden on me, but someone has to haul the equipment to the van, load it, cart it around, unload it and haul it back to the house when we get home. Sometimes you need to run out and back, then out again soon after - the equipment goes every time. It's not uncommon for Christie or the boys to load and re-load my bags 5-8 times a day. We can't just leave them in the van if we're going back out because if the machine faults, the bags need to be within arms reach.

Sleeping can be difficult at first. I put the backpack on a chair by the bed to give myself the a generous stretch of tubing. I slept on my back the first two months, but if I wear the binder at night, I can sleep pretty comfortably on my side now. The machine tends to alarm if I stop breathing momentarily because of a dream, or hold my breath while stretching my muscles (which no one really notices themselves doing until an alarm tells you so).

I'm sure I'll think of more things in the future. Next post I'll discuss the obstacles involving insurance, hospital protocols, and the importance of a device coordinator who gives a rip.

This all sounds scary but I wish someone had prepared us for it all beforehand. It's both an emotional and psychological adjustment. Your life is literally at the mercy of this impersonal machine, and it takes a lot of effort on the part of loved ones and friends to keep everything moving smoothly. It's easy to get down in the dumps - while the Freedom Driver takes away all of the horrific sickness from before, it also chains you to itself and forces you into a life of even greater dependence on others. It's important to sleep well, eat well, and focus on the things you can do. Hopefully some of these details help someone to get straight with it all beforehand. I feel like we're still playing catch up.

"We've Done The Impossible, And That Makes Us Mighty."

Remember me? I'm still here. I have a beard now and have learned a lot since my last post. Did you know that The Beatles spoof band, The Ruttles, actually toured and recorded for a while in the 60's? They totally did. No, I didn't get bored in the hospital. Why do you ask?

But I'm home now, and I know I haven't posted anything since September. My excuses:

1) After being home for about six days, my blood levels got screwed up and I had to be re-admitted for another week. This was especially disappointing since my aunt who I haven't spent time with since I was a toddler was visiting. It really sunk in that having a TAH - or even a real, healthy, functioning heart - is no Get Out Of Jail Free card. There will still be hospitalizations. It's almost happened a few more times since then. It's sobering to finally face the reality that the rest of your life will be filled with scares like this, no matter what. The last thing I felt like doing was writing about it.

2) We were absolutely drowned in support, love, affection, and well-wishes in the weeks leading up to the surgery and during my hospital stay. That part was awesome. But inevitably, and by my own doing, it began to feel like everyone knew everything about every detail of what was happening. I think this is comforting for some people. By the time I got home, I didn't want anyone to know anything. I craved privacy. I still do. I spent many years in the public eye - though only locally - due to my ministerial affiliations, music endeavors, etc. in the Little Rock area. As a result, I carry a strong aversion to being recognized by strangers in public, and I get a little twitchy when all my crap is "out there" for people to see/read about. There aren't many times that I'm at Hershey Med now that someone I don't know, asks if I'm Dave, "The TAH guy." I wanted to wait to post anything until I was ready. I hope that makes sense.

Either way, I realized last week that the primary purpose for this blog is to keep family and friends informed, but it has also become a source of information for people in my situation, or who may walk this road in the future. With that in mind, I intend to post a few times this week and discuss various aspects of life with a TAH, some personal, some informative. I'll begin with the personal.

Let's start with how I'm doing, since that's the big question everyone asks.

Physiologically? I feel great. I don't feel sick every day, I'm rarely nauseous. My appetite has returned, as well as my passion for the things I love - recording music, writing, playing games with my kids, cooking...and I actually have the energy to do them. On the other hand, the TAH is extremely restrictive in terms of my physical activity. I'll get into that in the next post. I still have tubes stitched into my abdomen. I wear an abdominal binder 24/7 to protect them. I have a Pic line protruding from my right arm that has to be watched with strict scrutiny to avoid infection. So while I feel great, I'm uncomfortable with these intrusions to my body. They don't keep me up at night, but they can be quite a distraction at times. 

Emotionally? It varies. Most days I go about my business. Some days I think too much about the fact that my life is dependent on this machine I carry around, and that it could simply stop at any moment for a number of reasons. It's hard not to be on edge, at least sub-consciously while living in that state. Even if I do everything right, there is still the off chance that the machine could fault, causing whoever is with me to have to change me over to the backup driver - which means stopping my heart for a few seconds. It's dangerous, it's scary. As a result of this possibility, I have to have someone with me 24/7 who is trained on how all the equipment operates. There are a handful of friends, and of course Christie and the boys, who went through the week-long training classes while I was still in the hospital. We review all of this regularly. 

But the 24/7 thing is the biggest challenge. Christie works 12 hour shifts, 3-4 nights a week. That leaves me here with only the boys, unless one of these other trained friends spends the night. While we're unspeakably grateful that these folks are willing to give up a night or two a week to sleep over here, it also begins to wear on us, them, and our friendship. Imagine having company - even your best friends - at your house 3-4 nights a week (better yet, imagine spending 3-4 nights with *me* - that's a fate I wouldn't wish on anyone). Being there in the morning when you wake up. After a time, no matter how considerate they are (and they are all very considerate for the most part), you begin to crave privacy and solitude. Not to mention, the three of us boys are used to having "us" time while mom works nights - we've had that for nearly 8 years now. It's our time to watch Star Wars cartoons, play D&D, order pizza, or do whatever we want. Dressed however we want. For as late as we want. That's all changed, and the adjustment is harder than I thought it would be. The alternative is to simply leave the boys in charge of me while Christie's at work, but this presents another set of issues: What happens if the worst happens? What happens if the machine malfunctions and I die? Is it fair to put the boys in a situation where they have to live with that for the rest of their lives?

The obvious answer is - no, it's not fair. While I have zero reservations about them doing the actual deed of changing me over to the backup driver, or handling emergencies; they've done stuff like this for years, and Richard, particularly, is the most cool-headed person I've ever seen in a crisis situation - I'd have been in cardiac-arrest several times over the years had it not been for his methodical assessment of the situation, and his ability to take control and come up with a plan on his own. Kids should never be left in these situations, but someone has to work - Christie can't be here 24/7 and they are - it's been that way for years now. I trust them - in fact, in an emergency, I would rather have Rich and Brennan handle the equipment change over than any of the other adults that were trained. Because they live with the machine day in and out. They know what the alarms mean and what the batteries do, and they understand the reasons behind the systematic process of starting and stopping the machines, as well as my heart.

The most gut-wrenching conversation of my life took place about a month ago as we considered how to handle this situation. I may be on the TAH for a year or two. My physical well-being is the main consideration, but over that length of time, we also have to consider our family life. We have to consider how all of this together affects us - Christie, myself, and the boys. They have a lot of stake in this, and a lot of responsibility, whether they want it or not. Between my sobbing and apologizing, we talked about all of it. The boys ultimately insisted that regardless of what *might* happen should things go wrong, they would rather be the ones responsible for me in an emergency. They also insisted that even if someone else was here - they themselves would feel responsible if something went wrong from another person switching the machines. I have witnessed this first hand - even the adults that stay here take their cues from Rich. At the end of the day, he is the one everyone looks to if Christie isn't here. This isn't fair to him, and my mind reels. How did me having a heart disease ultimately lead to my 14 year old son holding his own father's life in his hands? If someone had told me it would come to this in 1998, at the beginning of this nightmare, I would have taken drastic measures to ensure that scenario never came to be.

Rich understands all of this. He acknowledges that it is not fair. But he also repeatedly tells me, "It doesn't matter if it's fair. This is how it is, and we have to deal with what is, not what should be." As a parent and adult, I have felt so lost in dealing with this - so has Christie. Do we continue sacrificing our privacy and the memories we make, and our (possibly short) time together for the sake of my physical safety? Or do we take the chance that we're overburdening our boys with a responsibility they should never have to shoulder for the sake of having as normal a life as possible in the midst of this? They insist that neither choice is attractive, but the latter is preferable. We've agonized over this since November and have decided to compromise - our friends will take turns being "on call" on nights when Christie works, and I'll be here with the boys. All of us openly acknowledge that if anything happens, it will happen before anyone can realistically get here - including the paramedics. We'e decided to make the most of the time we have, rather than living in what feels like chaos and a disruption of our whole life based on the off chance that a machine fails. The outcome is likely to be the same no matter who is here. It took weeks of tear-fraught conversations between us all (and some of these friends) to accept that reality. Rich and Brennan seem to have understood it from the very first week I came home.

So emotionally, psychologically, I don't like the situation. We're trying to do the best we can, and there's no one to ask advice from. The other TAH patients are empty-nesters, or there's Perry, who has no kids. Talk about uncharted waters. I worry we're sailing to that place on the map that says, "Here, There Be Monsters," but I don't know what else to do. My gut tells me to listen to my kids. Being on our own, travelling for several years, we encountered many situations that seemed to have no solution. The boy's input has been invaluable so many times, and we've learned to approach these situations as a team of 4. Yes, Christie and I are older and have more life experience, but we also have more baggage. The boys (as all children) seem to have an innate objectivity that escapes us often. It was Brennan who dissected the options of my post TAH hospital stay and brought clarity to the whole thing by offering a perspective that even the nurses present hadn't considered. His observations turned out to be dead on, logical, and the most objective. Rich has tempered our impulsiveness so many times I've lost count. It has saved us from financial problems, relationship failures, and pulled Christie and I back from the brink of stress-inspired knee-jerk reactions repeatedly. We've all learned to trust each other, and it's impossible to think about making such decisions without their input weighing heavily. As captain Mal Reynolds says, "We have done the impossible, and that makes us mighty." It's become our motto.

I can see the heaviness of all this, weighing on them at times. I feel like they don't often just get to be kids. Anywhere we go, they're both listening for alarms. Rich carts my backup equipment around without complaint - but I'd love for him to be able to leave the house without doing an inventory to make sure dad doesn't die while we're out. He knows - a forgotten battery, or adapter, or even a lost filter guard tool can mean hospitalization, or even death. I'd rather him be worried about having the right Nerf gun. I'd rather Brennan be more concerned with carrying his Pokemon cards than with checking battery levels to assess whether I'll need to be plugged in wherever we're going. I can tell it wears on them, but I've never heard a single word of complaint. The constant battery switches, the moving of power adapters between rooms and floors, the filter changes, the constant re-location of the backup equipment up and down the stairs, in and out of the van, up flights of stairs...they never moan or gripe about it. They've accepted the reality that this is the way it is, even though it's not right, or fair. Given that, how can I complain about my situation?

Physically? I sleep much better now. I don't tire out in the middle of the day, or have to sit down every 10 minutes when we're out somewhere. The freedom of that is incredible. Physically, no one should be worried about me. But I worry about Christie a lot. She's been trying to find a job where she can work at home to take this burden from the boys, but the pay is usually bad, and the job security lackluster. This makes her feel guilty, but she can only do so much, and someone has to work.

The worst thing for her are the trips to the hospital. I hate them too - they interrupt my days and weeks and make it really tough to commit to anything. Mon, Wed, Fri without fail, every week; PT-INR checks, lab-draws, dressing changes, more PT-INR checks...add to that the regular doctor appointments with the intensivest, cardiologist, neurologist, etc. We only live a half hour from the hospital, but think about the way this works; my appointments are non-negotiable. So is her work schedule most of the time. Generally, she goes to work at 7 pm on Sunday, gets off work at 7 am Monday - then I have an appointment at 11:30 pm that day. It's often difficult to get a ride to the hospital in the middle of the day, and I can't drive myself - I can't even sit in the front seat because of the air bag. So Christie typically clocks out after 13 hours on her feet, drives home, showers (because she's likely been puked, peed, or pooped on - or exposed to all manner of disease and bacteria that is dangerous to me) - it's now about 9:30. We leave for the hospital in an hour. Take a nap? Stay awake? Usually the latter. We get back home around 1:30-2 pm, provided the doctor or the clinicians aren't running behind. She's in bed by 2:30 pm, then up again at 5:30 pm to go back to work at 7pm. Sometimes this happens for days in a row if there's an extra appointment on a Tuesday or Thursday. Or the boys have something on those days they can't get a ride to. Or that a parent needs to attend. And it's been like this for four months now. 3 hours of sleep most nights (days in her case) would drive the best of us to insanity. I honestly don't know how she's still doing it. Friends help out as much as they can, but they can't be at our beck and call all the time. Sometimes we get lucky and score an appointment for 8:30am, or she's off the night before, but that's not typical. It seems sometimes that it would be better for me to be admitted to the hospital, but there's no viable reason for insurance to cover a full admission.

Add to that the fact that she signed a contract saying she would begin work on her BSN within two years of her hire date. When we moved here to PA, we were so desperate to transfer my transplant list status, we would have signed nearly anything. We were in a rush to get a house and a job, and we both figured she'd be able to start school pretty soon. We didn't know I'd be in the hospital for 2 weeks at a time every 6 weeks for 2 years, or that I'd end up on a TAH, completely dependent on her, and her responsible for pretty much every household duty that I'd taken on for years. The two years was up last summer and despite appeals to the very top of Penn State's Nurse Managers, my device coordinator, and letters sent by friend and co-workers, she's required to start school by February or she will be terminated. With us living paycheck to paycheck, and tuition not being reimbursed until the class is completed, we can't pay for it. She doesn't even have time to take a single class to begin with - and if she tried, she would most certainly fail or have to drop out, with consequences to her transcript. In the midst of this, she's looking for a new job, which will postpone the school deadline and possibly stabilize her schedule. She's obviously stressed out about the whole thing. If she's terminated - no insurance, bankruptcy, possibly losing our house. I worry about her physically and emotionally. And the kids, of course, feel this tension and uncertainty, though we try to put on the bravest face possible. 

So I'll say again for the 100th time on this blog - I don't share these things to elicit pity. Some of my readers will be implanted with TAHs in the future, some are already on that road. These are some of the things to expect. You will feel better, but it's far from a cure-all. Your life, and your family's life, will be dominated by hospital appointments. Your time will not be your own- there will now be people in your life at all times, whether you want them there or not. You will lose all independence outside of your home. Solitude is non-existent. Your spouse/life-partner will be taxed to their limit, and those around you will not understand your tension, your stress, your absolute exhaustion. They will be angry and hostile - because this was supposed to make everything better, right? You start to suspect that at the root, they're simply angry because you're still sick. You will learn to ignore all of it and focus on your family, on staying as healthy as possible (because, lucky you, you get to do this whole thing again, but this time, at a higher risk level because of the TAH and subsequent transfusion anti-bodies in your system). You learn to cherish the day and disregard the people who think they get it but clearly don't. They're not bad, they're just ignorant. Most of all, you learn what is important and what's not - you let go of things, while simultaneously holding on tightly to the scars you have earned while enduring this fire. These are scars you hold in common with those closest to you who have held your hand through the fire. And you keep living. 

Conclusion - I'm happy to be alive. Any day above ground is a good day. I wish I could do more. I wish my family wasn't burdened with my care to such an extent. I'm anxious to end this season of life and get a transplant, in hopes of truly being well and independent again. I'm doing well, but as always, there are clouds looming. I don't think they ever abate in situations like these. You just have to look for the sun behind the clouds and buy the best umbrella you can afford.

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.

Consistent Inconsistency

Things my appearance at XYZ event is dependent upon: (other sick folk, feel free to continue the list in the comments).

1) My water weight compared to yesterday. If it's up significantly, I feel like a beached whale and will probably explode if someone bumps me in public. If it's down significantly, I will feel like a cosmic syringe was used to suck the very life from my bones.

2) The proximity of the bathrooms to XYZ event. Cafes and restaurants are usually a thumbs up. Parks with port-o-lets 1.5 miles down the hill from the parking lot, a thumbs down.

3) My general state of vomitiness (it should be a word). I enjoy listening to someone dry heave through lunch as much as the next guy, but it's embarrassing when you're the person dry heaving.

4) The Headache. There is always a Headache, but most of the time it isn't severe enough to warrant cancelling things. When it makes it unsafe for me to drive or supervise my kids outside of the home, thumbs down.

5) The cold. My body with its failing heart functions normally between 60 and 75 degrees. It's a small, sucky window. If I'm exposed for too long, my hands, feet, and face become numb - even at 55 degrees if the wind is cold. Next come tremors, then full on body spasms as my nervous system rebels against the deprivation of blood to the extremities. This isn't just "not liking cold weather," it is an involuntary reaction to loss of proper blood circulation.

6) The heat. Especially with humidity, I feel like someone is sitting on my chest every time I move - walking, sitting, standing, getting in and out of a vehicle, etc. My lungs are trying so hard to extract oxygen from damp air surrounding me that any other expenditure of energy and oxygen winds me. I hide this by breathing quietly through my mouth and restricting my movements, but eventually, I will pass out from lack of oxygen to the brain. It may feel "a little muggy" to everyone else, but I am more sensitive to humidity than any other single environmental factor - it is worse than a cigarette smoke-filled room. Those kids in the Abuterol commercials with asthma? That's me on the inside, and soon on the outside if I can't get the moisture out of my lungs.

7) Panic attacks. Another side-effect of medications. They do not happen often, but have happened in large crowds or in gatherings where too many bodies are stuffed into one house or room. I have to hide in the bathroom and tell myself to breath. If I know I'm likely to have one at XYZ event that day, I won't go. Even if it means cancelling at the last minute because I don't want to risk leaving my kids by themselves for half an hour while I try to stop the craziness in my head.

8) Walking distance. Handicapped parking is typically a joke. In the heat and cold, 50 ft. between my van and the air conditioned building can make a huge difference.

9) The past and the future. What I did yesterday affects how I feel today. What I must do tomorrow may dictate that I do nothing today. I need plenty of time off of my feet, at rest, to recover from or prepare for a busy day. The more consecutive busy days, the more time I need to rest in between. I used to push on through and I've landed myself in the ER twice now because of it. This means I'm going to miss important things, things that I am depressed about missing, and often times, things I promised my kids we would do.

10) The present. Sometimes I slept well, my weight hasn't changed, my stomach and head are only mildly annoying, and I still feel like absolute crap. I will randomly decide I can't do something I committed to, and I do it for my own good because I know the consequences of pushing through anyway. Sometimes I will choose to pay those consequences, but there is no consistency - my condition is ever-changing and I feel randomly good and bad for no explanation, so trying to explain how and why I can do something one day and not the next is pointless. I don't understand it either, and neither does 25 years of HCM research. It just is.

I offer this list because I know it must be confusing to some people that I can do something one week but not the next. Or why I could tolerate the temperature one day but not the next. Or why my diuretic had me living in the bathroom yesterday but not today. All I can do is guess, go by how I feel from one day to the next, plan the best I can, and commit to as little as I can. It is not what I choose, it is what has been foisted upon me, and I will do the best I can to be consistent. But inconsistency has become my life over the last year or two, and it will only get worse as I progress.

Hopefully the list can be wiped away post-transplant but for now, I have to live around it. I'm fortunate enough to have friends and family who understand that, but many sick people don't. They don't need to fight a battle of wills with people's unrealistic expectations on top of fighting their disease.

The Taffers in My Life

Behold the power of the internet.

To date, my friends at TTLG.com (Through The Looking Glass) have donated a total of $2882.79 to the fundraiser started by our friend Ellen Gecker. That's over half of what has been raised in total. Of course, family members and friends have given generously as well, but I wanted to say a specific thanks to my fellow Taffers. We went from talking about a game (Thief), to talking about our kids and lives, to meeting in real life in some cases, to a 15 year long friendship that has survived life's changes, marriages and divorces, the death of loved ones, and even the death of two of our own.

You guys are awesome. I'm honored to be part of such a creative, compassionate, smart, and funny community. I can't imagine my life the last 15 years without you. Some of you have become such an integral part of my life. I hope we're talking about something other than a heart transplant in 15 years. Taff on, my Taffers!

The Things You Don't Tell People

I'm settling with the idea that this blog has become a tell-all for the chronically ill. Thanks to those of you who have messaged me with encouraging words and similar stories. It helps to know we are not alone. I think sometimes the things I share may be too personal, and this post especially so.

In the spirit of continuing to share the gory details, I want to talk about the side-effects of medications. I can't speak for anyone else, but it is without question the single most frustrating and isolating thing about being chronically ill. Unless you've been on the long ride through medication overload, this post will seem like a series of excuses, complaints, whining, and over-exaggeration. People say to me all the time, "Oh, I forget things too - that's just because you're getting older/busier/more relaxed."

Can I just say this is tantamount to telling a chemo patient that sometimes your stomach hurts too? Just because the side-effect is invisible doesn't make it any less a medical struggle than the visible ones. You may think we're mulling over nothing, but we know. In our heads, we know there is a disorganization and loss of ability to concentrate that didn't exist last year, last month, last week. We can tell it's getting worse. And it's not because we're too busy, or don't care. It's because we're drugged.

The fact is, that beta-blockers and two other drugs I (and most heart patients) take cause short term-memory loss, fatigue, and somnolence (a near-sleep state). Add to that the fluid retention and consequent diuretics (both of them) which can leave you alternately bloated and brain-fuzzy, or dehydrated and twitchy several times in the same day, and you've got a real cocktail for memory loss. If a medication makes someone vomit or pass out, no one would dare say to them, "Yeah, sometimes I throw up and get light-headed too." They are having an obvious and abnormal reaction to medication. But drugs that cause forgetfulness and loss of focus are more subtle. People try to commiserate because "I sometimes forget my keys too." It simply waves away the struggle that the medicated person has while they fight desperately to hold on to coherent thoughts, as well as fight the constant dread that they've forgotten something horribly important and will pay the consequences for it later.

I got lost three times this week driving to a friend's house that I've been to at least two dozen times in the last year. I'll spare you other examples, but it's scary to know that a 12 minute trip just took you 35 because you can't remember where to turn. Maybe normal people do that, but I got lost almost everywhere I went this week. My GPS is on the fritz and just the trip to pick Christie up from work at the Med Center (where I've been a hundred times) was so mentally draining I was sick to my stomach afterwards.

The isolation happens like this: (topropl dependents are already nodding their heads)

1. You forget things. All the time. Typically important things. Yet your head is filled with nonsense minutiae about every stupid TV show you've ever seen, or sports stats, or in my case, music history. Yet, I can't remember an important financial conversation with my wife yesterday. I can regale you with the specs of Chris Squire's bass rigs throughout the 30 year history of Yes' career, but I'm hard pressed to remember your response to an urgent question I e-mailed you 20 minutes ago. This is short-term memory loss. And the harder I to try to pound something into my head, the more likely it seems to slip out.

2. The people around you are at first sympathetic, then grudgingly accepting of your forgetfulness. But that soon turns to mild frustration and what I call "hand-holding." Over time, peers begin to treat you as a ward, or a child that needs to be reminded to bring his wallet, his keys, of what time things are taking place, of what you should bring...and you don't notice any of this at first. In fact, you are grateful because you need reminding. Even though you wrote it down, made a list, and looked at your calender just this morning, by the time you finished making breakfast, the whole thing is just gone, removed from your head. It's especially troubling when your own children have to take on this roll - retrieving forgotten pill bottles, running interference so you don't lock yourselves out of the house, constantly reminding you of the day's events and times. The roles become reversed. Friends who can gently help you along without viewing you as less an adult are valued more highly than gold.

3. People's perception of you begins to change. No matter how organized, on-the-ball, and sharp you used to be, you now seem flaky, behind-the-curve, always playing catch-up. This is honestly the absolute worst part. It sends the inadvertent, and untrue message that you simply don't care. That the conversation, or email, or event just wasn't important enough to hold your attention or to be remembered. That message is further driven home when you demonstrate the ability to remember insignificant details about other, less important things. But you can't pick and choose what is remembered and what is forgotten. The beta blockers do that for you. Every great once in awhile I forget the title of the 7th track on Rush's Presto album. But I'm more likely to forget my own birthday, directions, times, and conversations. See? It sounds like an excuse bank for being late and irresponsible.

I used to be the opposite of all that. People who didn't know me previous to my illness will never believe it, so far to the other side of the spectrum have I slid. My mind has betrayed me. Moments of clarity are cherished as I try in vain to figure out how to replicate whatever it is that caused it. But it's random. The next moment my mind is so tired that I can't remember what I was trying to figure out. I use the Luminosity website religiously in hopes it will keep an edge on on cognitive skills and attention span, but statistically, I'm only marginally ahead of people ten years older than me.

Random really does become the lifestyle. Do I show up on time? Randomly. Will I remember that we agreed to meet/discuss/cancel/postpone/bring xyx? Randomly. Will I remember the email or text that I read 4 times in desperation to burn it into my brain? Randomly.

I try to be at peace with this but there is simply no way to be at peace with standing people up, forgetting important information about your family and friends, or at peace with a growing reputation for instability, flighty-ness, and in-attention. I feel stupid and slow and most of all isolated. Because it is the prime invisible factor of my heart disease that is summarily dismissed as being normal or an excuse for personality defects. It is exhausting to find new words to excuse the same behavior. And others tire of hearing it, like I used to tire of the excuses of the addicts and alcoholics that crossed through my life during my ministry years. I want to change, but it's beyond any amount of willpower or resolve. The ability to do better disappears as surely and frequently as the pills down my throat every morning. I am not me anymore - I am buried under this fog of numb half-awareness, trying to get it together. I know what's happening in my mind, but I don't have the energy to continually express it to others.

Several transplant friends have warned me of this. I didn't believe them until about a year ago. I thought my life had become too busy. But my meds had increased, and they have increased again a year later. They told me to prepare for skepticism, exasperation, and much eye-rolling over forgotten appointments, mixed up calendars, lost valuables, and confusion. It is subtle and slow, but pushes you into yourself and you begin to see yourself as others do - a space cadet, unable to manage his own schedule and commitments. Part of the solution is to stop making commitments, a whole separate issue which I'll address in my next post.

There was something else I wanted to say here, but I forget.