The Letter I Don't Know How To Write

Hey Perry,

I know this was an open ended conversation and we picked up the threads from time to time, but now I have to close it and I don't know how to. I talk more than you anyway so I guess it's only fair. But we had to talk about this, right? It's something that's really too hard to talk to your family or close friends about - not really talk. Too much baggage. It was easier when we didn't know each other so well at the beginning - it was a safe place to say things we wouldn't dare say to other people. Then it got harder because it's safe to talk about dying with a passing stranger. But once you know them, you don't want to think about it anymore. They go from being a statistic to being a friend, and it's impossible for us to imagine a friend becoming a statistic. It's easier to imagine it happening to ourselves, because we know in our hearts that we are not immortal. We know what it feels like for everything to spin out of control. But that friend? That's the guy who won't ever let it get him. I don't know how. Maybe because he's been through so much, that you come to suspect he's superhuman. So I have to confess, I simply overestimated your immortality. Everyone did. And that miscalculation shows on the faces of everyone here today. I hear the miscalculation in the quiet that has overtaken the HVIC unit today. The nurses are trying really hard to work, but we're all a bit lost. Krista's a mess. A few people won't make eye contact with me. Kat is putting on a brave face but I can hear it in her voice. Everyone is numb.

You were already out of it when they admitted me on the 16th. They moved me down to 1170, or as we call it here on the HVIC, "Perry's room." They didn't know whether to put me here or in 20, right next to where you've been since the day after Christmas. I think this room was the wiser course, because I would have likely tried to sleep in the chair next to you or refused to move from the hallway outside your door, if my IV cable and TAH hose would have reached that far. So here I am, sitting in your chair, using your TV and bathroom. Of course, I'm keeping it cleaner than you did because you're a slob, dude. Still, t's weird, your stuff not being here. Even weirder that you're not in here when I come back from a walk, cussing at Ryan or Tyler for creaming you in Madden. I feel like I'm violating your privacy somehow.

Remember that time you put the Ghost Pepper sauce in Adam's drink? He was sick for a whole day, but we were laughing about it the other night. It was a good prank. Sean's not here anymore, but I'm sure he'd laugh about the apple incident too. Cindy went back to the float pool but every time I see her she wants to do a skin assessment. Glad you got such a kick out of my victimization. Jerk. A lot of people are gone now, which is pretty much your fault. They can't come in this room anymore, and they can't focus without the thump of your Freedom Driver as you try to dictate which nurse you'll have, or bugging them to walk over to the Slushie machine in the Children's hospital with you. They've either left or moved to other units because they screwed up and got emotionally involved. Impossible not to. You kind of sucked people in that way.

It just seems like this whole thing should have ended right, ya know? The story of a young guy who struggled with HCM his whole childhood, implanted with a TAH at 18, going on to transplant and having a long, happy life. Because for some reason, those are the only stories people want to hear. They don't want to hear about brain bleeds, bone marrow cancer, ECKMO machines, ventilators, bleeding out, brain damage, transfusions, and then at the end...the good guy loses. You gotta admit, it makes for a really crappy story.

But it's our story, right? The one about private battles, fought in P.E. class in jr. high when you couldn't run the laps like everyone else. Hiding out to escape the inevitable pain that will plague you the rest of the day if you do the push-ups. A-fib spinning the room around, and that frantic moment when it feels like someone just dropped a truck on your throat. Waking up in the middle of the night and it really hits you that your life is at the mercy of a machine you don't understand, or even trust. And trying to breathe through the panic so the alarm doesn't go off. Holding at bay the worry that you could buy it at any time. Watching friends fall away as the drama burns itself out when they realize there may be no end to this. It's okay that they can't finish the story with you, but it's another battle to let them go and not be angry. About making plans for a food truck and an apartment, soccer with the kids, and drum sets, and fantasizing about a normal life on the other side - one you know is unlikely to ever exist because of rejection and biopsies and immuo-drugs and possibly dying from the stupid common cold.

But you talk about it anyway, and you make plans because it helps you, just for a moment, to believe that there really is life beyond these small rooms filled with needles and tubes and finger pricks and painful dressing changes and PICC line changes. In the end, you fall asleep knowing that you probably shouldn't have talked about it at all, because it just makes you want it more, and there's nothing you can do to make it happen. If there's one thing that HCM transplants like us know, it's to not get your hopes too high. They've been smashed so many times that you don't have the energy to pick up the pieces anymore. It's not a story for TV. But it's our story and it's important because some of the time, we actually won those small battles. And we're the only ones who know how much strength and soul it sucked out of us. And I think it's okay to be proud of surviving the things we did, even it's just one more measly blood draw.

Remember how on the last episode of Scrubs, J.D. walks out of the hospital doors that last time and has a vision of all the things that might be? Friendships, and family, and happily ever after? And he's at such peace because even though he can't really see into the future, he sees a possible future, and that's enough?

I want that moment. Where I see you living in our spare room, just like we planned, being my trained volunteer in case the TAH malfunctions. And Rich and Brennan not having to carry that weight. Where I see you in your food truck, knocking out that fantastic Lasagna and all the fusion foods we worked on during my last SWANS cath. I'm working the window between taking orders and there's a big heart painted on the outside of the van. And everyone knows our story - that we fought a war together, and came out the other side with all the scars and the lessons that we learned. That you're older and I am wiser. And then we go to the apartment you had your eye on and your girlfriend and Christie meet us there with the boys and you beat us badly at Settlers of Catan and then gloat about it. You're a horrible winner, did I ever tell you that? And the kids pig out on Warheads and Troll Bites because you keep way too much candy around (if they end up with diabetes, I'm totally blaming you). I want that moment, in the middle of normal life, when no one else notices the look we exchange that says we know, between the two of us - we won the war.

But now I'm forced to let go of that moment, and remember this part, with all the tubes and machines and blood, and more needles, and remember every time I look up from my laptop how I came to be in your room. I'm forced to admit that for all the bloody battles we won, that the war was lost. It's not your fault. It's just biology, and sooner or later it gets the better of us all. It's stupid to say it's not fair that it got you sooner - that's obvious. The hardest part for me will be holding myself back from trying to make sense of it. Because no one can, and anyone who thinks they can is a damned liar. We talked a lot about that too.

I can say with a lot of conviction that I'm going to win my war. Maybe in that way, it'll feel a little like we both won, somehow. Probably not. Then again, we both know that no matter how strong our will is, and how righteous our determination, we are at the mercy of biology. And it's nothing personal - it's just doing the job Mother Nature gave it to do. There are hopes and prayers, but we also both know that in this environment, there are way more tragedies than miracles. We've seen enough of both. I allowed myself to hope for a miracle, though I've never seen anything to make me believe in such a phenomenon. I'd hoped the third-hand anecdotes were true, that maybe I would have one of those unbelievable stories about you. But we don't get to pick our stories.

I'll stay away from the fish in the cafeteria, like you said, and use the TV for my Xbox whether they like it or not. I'll check in on Jamie every day for you (I've been doing it the last two weeks if that makes you feel any better) and even try to get her to eat real food when I can. Tommy came by today to check in on you like he always does, and to say goodbye. Nearly everyone did. I'm giving Adam a lot of crap on your behalf and when I see Sean, I'll tell him you said hello. I'll stay in touch with Mudge and Terri too. But I don't promise too stay here long. Eventually the HVIC will be absent of me and Jamie as well, one way or another, and life will move on until most of us forget each other. If I do come out of this alive, and get to tell my story, it will be partly because, despite your age, you made me face reality at some pivotal moments when I almost blew it. And because even though it was a risk, you determined to finish the war, win or lose. Sometimes it's just the fighting that counts and you should get a medal for that. I'm glad we got to fight a little bit together. I expect the air is easier to breathe now, and there are no more machines to keep you from flying.

Clear skies to you, my brother.

Dave

The Five Man Electrical Band Was Right

"Signs, signs, everywhere a sign, blocking up the scenery, breaking my mind, do this/don't do that, can't you read the signs?" (Five Man Electrical Band)

If you've had any interaction whatsoever with the medical, pharmaceutical, or insurance industry, you've no doubt encountered rules. They have rules for everything: how long you can stay in the hospital, what constitutes an "emergency," orders for filing claims, time windows for prescription refills, who can prescribe what, referrals, percentage caps on co-pays and coverage, on and on and on.

While I still have to deal with most of that stuff, it's been a little unnerving how mushy some of the rules are for the TAH itself, not to mention some of the gaps in my practical care. The problem is that this whole notion of sending a patient home to live with an artificial heart is so new, there aren't a lot of protocols in place. There are some hard fast rules about how often to change out the machine (120 days), when to change the filter (once a week), the range of your PT/INR (blood coagulation - and this is a biggie), blood sugar levels, etc. But in terms of day to day issues, there's a lot of uncharted territory. And we've encountered a lot of unexplained things.

We underwent a 30-something odd hour training class in which we handled the equipment, tested rigorously, demonstrated proficiency, participated in trial runs away from the comfort of the HVIC unit, and signed agreements that we would care for the equipment and such. We learned what each beep and boop meant, what the alarm button colors meant, and how to methodically assess the problem when alarms sounded.

When we got home, the machine started doing weird things. Things no one had told us about. For instance, when unplugged, the machine emits a series of beeps at about 20 minute intervals. We finally realized that the beeps corresponded to each 20% mark on the battery life indicators. It's great because it helps me keep track of how much battery life I have left without having to look at the machine itself. Problem is, this is mentioned not a single time in the literature, nor was it mentioned in the class, nor has our device coordinator ever heard of this before. I got a new machine last week and it does the same thing, only with both drivers, they didn't do it all the time. Sometimes I would hear nothing for 3 hours, then a low battery low alarm sounds off. No warning. The new driver emits the same beeping sound intermittently even when I'm plugged in. No one knows why. We think it's probably beeping to let us know when each battery is fully charged after plugging in, but that doesn't seem consistent either. The machine functions properly, and has been rigorously tested by the Syncardia company, and two separate bio-engineering teams at Penn State.  But there's no explanation for these inconsistent alarms. I try not to let it unnerve me but it's a little more than a distraction or curiosity when the thing is controlling your heartbeat.

I also detailed in the last post that I essentially have two wound sites - the canula site where the driver tubes enter the body, and the Picc line. I guess "wound" isn't the right word but they have to be treated with extreme care to prevent infection - it's not like they can just remove the canulas because the site got infected. There's no backup for that. The Picc line is important because of weekly blood draws, and the immediate access it gives nurses if I need emergency meds. After having blood drawn conventionally for labs about 6-8 times a month starting back in 2013 (and 3-4 times a week in 2015), my veins are trashed. Even the instructor in the Penn State lab confided that they would soon have to start using veins in my feet and legs if my arms didn't get a rest. So the Picc line is my friend.

Upon leaving the hospital, Christie was "trained" to clean the canula site and change the dressing. She's been doing this for patients for years, not to mention much more complicated wound care, so that was no problem. Then came time for the Picc line dressing to be changed, and blood to be drawn for labs. She wasn't allowed to do it - we were given a dozen reasons why (all asinine) - if it gets infected, insurance won't know who to blame and whether to cover the following treatment - only RN's employed on the HVIC are "covered" to draw blood through a Picc line. This couldn't be done in the general lab since lab draws MUST be done by RN's and the lab does not employ one. The cancer infusion center draws blood from Picc lines, but I'm not a cancer patient. Though Christie does blood draws for labs dozens of times per week, and a home health RN is allowed to do it, AND she's changing the dressing on a much more dangerous open wound (the canula site), she was instructed unequivocally not to do anything with the Picc site.

So where was I supposed to get labs drawn? Home health costs $27 a pop, $54 a week. That adds up fast when you're already going broke paying medication co-pays and the primary breadwinner is missing work because of all the doctor appointments. The spouse (in my case the RN) changing the canula dressing can't do it. The lab can't do it. So what do I do? We posed this question to three different device coordinators, three intensivists,  a cardiologist, two nurse practitioners, and every HVIC nurse we could talk to. No one had a definitive answer. There was no protocol for this because I was the very first patient sent home on a TAH, needing bi-weekly blood draws, and needing them done via a Picc line. It started to seem like all involved wanted Christie to do the blood draws - despite their official instructions not to, wink wink. If an infection actually did occur, she'd be left holding the bag, whether it was her fault or not.

Because she works at Penn State, she was able to circumvent the insanity and get an order for me to have labs drawn in the cancer infusion center. What about patients whose spouse doesn't work for Penn State? What do they do? There is no answer.

PT/INR checks are part of this mess as well. I need them three times a week to ensure my blood isn't thickening, putting me at risk for stroke. They cannot be skipped. Again, a home health nurse can do it for $27 a pop. Or we travel the hour round-trip to the INR clinic so they can prick my finger, put a drop of blood on a slide, and feed it to a handheld machine. Don't they have these for home use? Why yes, they do. But insurance will only pay for it to be used once per week. That helps, but what about the other two times? Why won't they cover three times per week since I'm at a higher risk than most, due to the TAH? What's a TAH? You've never heard of a TAH? Oh, you don't have a box to check for "TAH" on your claim paperwork? You have to file it under LVAD? Then what happens? Insurance will cover one stick per week, like they do for LVAD patients? But I don't have an LVAD, I have a TAH. Remember? I was just telling you about the TAH? You don't have a box for that?

You get the idea.

Speaking of no box to check, this is especially interesting when it comes to OPTN and UNOS, the organizations that essentially oversee the waiting list for transplants. They also have no box to check. I'm sure I've posted info on how this works before, but as a quick refresher, the list works like this:

Status 1A: the most urgent, will-die-very-soon-without-organ patients, who are likely living in the hospital hooked up to life-sustaining devices.
Status 1B: patient needs a transplant asap, but isn't at death's door - possibly spends time in the hospital as a 1A patient, but mostly lives at home with some type of device or intravenous drug dependency.
Status 2: patient who eventually needs a transplant, but doesn't need any type of life-sustaining devices and is being managed with oral drugs.
Status 7: patient who could have been any of the above but is currently sick, away from the transplant facility, or for some temporary reason unable to undergo surgery at the present time (usually sick with flu, cold, etc.)

I was Status 2 before the TAH when I was at home. When I would spend a couple of weeks in the hospital, with a Swans cath and intravenous drugs, my status was elevated to 1A. When I went home, back to Status 2.

Most people on LVADs are considered 1B's because they don't have to live in the hospital, and the device is sustaining them at home. In most cases, should the LVAD stop doing the trick, they would be hospitalized and become 1A, probably dependent on bypass machines, intravenous drugs, etc. until they can get a heart.

TAH's are classified as LVADs because UNOS and OPTN have yet to seriously evaluate exactly how TAH patients should be treated in relation to the waiting list. The problem is, a TAH is NOT the same thing as an LVAD. An LVAD patient has several options left if their device starts to fail, or their condition worsens while on the device. TAH patients have already exhausted every other option. There is no further treatment if the TAH fails. At that point, they are in as much if not more trouble then a 1A patient because there's no way to "treat" an artificial heart. You can't coax a few more days or weeks from it. It's a machine. For now, TAH patients are 2's unless admitted to the hospital, or they can get an exception in which case they are elevated to 1B's.

So it would seem like the sensible thing to do would be to stay admitted to the hospital as a 1A, which would increase the odds of getting a heart sooner, right? We had long, long, long conversations between ourselves about whether I should come home or stay in the hospital post-transplant, because we thought it was an option. Brennan, sensibly, argued that I'd have to wait several months to be re-listed anyway, so I might as well be home during that time, then get re-admitted when I was re-listed. That was the plan (though, to our surprise, I was re-listed within weeks of the surgery). Makes sense, except according to insurance, as long as my PT/INR is reasonably stable and there are no other complications, there is no medical reason for a TAH patient to be admitted to the hospital. They won't pay for it. But the reason they take this stance is because by their rules, TAH's are the same thing as LVADs. 

Obviously TAH's need their own classification with OPTN and the insurance industry. But think about this for a moment: I am insured by the very facility that implanted the TAH device, yet they have no separate classification for it. That's how new this is.

The medical/science aspect of the TAH is wonderful. I'm lucky to be alive, and so grateful that this technology even exists. But it comes with many challenges that are frustrating, maddening at times. Five years from now, most of these issues will be resolved, but they are definitely things for the future TAH patient to be aware of. We weren't. Hopefully, our experience helps to prepare those of you considering a TAH down the road. All of this is workable, but it takes work, a lot of time on the phone, pushing, prodding, and arguing at this point in time. The great hope is that the medical and insurance industry will catch up with the technology soon, and none of it will be an issue anymore. Until then, there are a lot of Signs.

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.