What If I Just Completely Lose All My Marbles?

This may be a tough post to read. It was difficult for me to write. Nevertheless I am compelled to address it for those who are looking in from the outside, and more importantly, for those approaching similar difficult decisions in the near future.

I'm involved in a research study at Penn State regarding end-of-life decisions and attitudes toward advance directives, life-saving measures, and how the hospital communicates with patients about such issues. Christie and I met with a research assistant Friday to answer some of these questions ourselves, take some surveys, and discuss my own options about all of this.

We breezed through most of the questions, much to the amusement of Rene (the assistant administering the surveys). Most people look at my age and assume that all of these issues are relatively new to us. But we have been discussing them on and off for nearly fifteen years now. I was told at age 28 that I had 2-5 years to live. This kind of stuff has become light banter over breakfast for us. So we plowed through the questions pretty fast, moving a percentage slider between 0 and 100%.

Q: "If you required a ventilator/feeding tube to breathe for you up to one month/six months if you were assured your condition would return to normal, how bearable would this be?"

A: Very. We're taking the long view, right? Who wouldn't endure half-a-year like that to get their health back? Kurt Cobain, maybe.

Q: "If you were confined to a wheelchair for the rest of your life due to life-saving measures, how bearable would you find this?"

A: Not fun, but bearable. Any day above ground is a good day, eh?

Q: "If a life-saving measure such as CPR caused severe dementia, loss of cognitive function, or permanent brain damage, preventing you from caring for yourself or having meaningful relationships with friends or loved ones, how bearable would this be?

A: Whoa, whoa, whoa. Back up there a second, Betsy. Dementia? Brain Damage? Does this mean I run the risk of becoming a Republican or liking The Doors? Bring me a handgun, stat.

Did you know that 85-90% of people who receive CPR sustain permanent brain damage? NEITHER DID I! I feel betrayed. CPR works so well on Baywatch, ER, and even on the X-Files. The shock of learning this is rivaled only by the emotional pain of realizing Mulder and Scully lied to me. Trust No One indeed.

Since I was diagnosed with HCM in 1998, I have probably forgotten more than most cardiologists have read on the subject. Ditto transplants. I would confidently go toe-to-toe with any cardiologist on the practical implications of central and PIC lines, diastolic failure vs. systolic obstruction, gradients and their effect on cardiac output and ejection fractions, the relevance of ejection fractions for congestive failure vs. diastolic failure, side-effects and long term benefits of pretty much any cardiac drug in existence (as well as who makes them and how much their CEO's earned last year. Bastards), or the use of VAD's and internal devices in various stages of failure. If they'd let me stay awake for the transplant procedure, I bet I could run the thing. I've watched so many transplant procedures online that I finally ran out of internet. I know all this stuff because ER cardiologists kept trying to kill me and I figured I'd better know what's going on. It's the reason we are in Pennsylvania instead of Little Rock or St. Louis - if I know more than my cardiologist, time to move on.

But not until Friday, sitting in front of this survey did I consider the fact that I could come away from this whole thing with brain damage. I know transplants carry a heavy risk of stroke while on the table, but those statistics have become way better in recent years because the drugs are better and the procedure is shorter than it used to be. Christie deals with post-transplant patients all the time that have had such problems. But I'd never really considered the question: If you had to live with debilitating brain damage, would it be worth it?

Look at your kids, then at your hands, and around the room you're sitting in. See those books? You can't read them. See your kids playing that video game? You can't join in. Hear the conversation around the dinner table? You have nothing meaningful to add. The most intimate interaction you have with your spouse is when they help you to the bathroom. Maybe you can't listen to music anymore, certainly can't play an instrument. I'll let you chew on that for a moment.































Our light-hearted joking and buzzing through end-of-life questions came to a screeching halt. What if I couldn't cook Chicken Marsala ever again? Or stumble through a song on the guitar? What if Paul singing, "When I find myself in times of trouble..." registered no meaning? Or I couldn't finish reading the Fablehaven series to the boys? Or enjoy an episode of Gilmore Girls with my wife? These are small things, but they are what life is made of. In the words of Rob Thomas: "Our lives are made in these small hours, these little moments, these twists and turns of fate. Time falls away, but these small hours will remain."

Physical limitations are daunting, but sometimes people who can't work around are often just lazy. The mind is where we find ourselves - it's who we are. It's the well from which our creativity, sense of humor, and unique perspective spring. I can't play drums anymore, but I can write songs. I can sing. I can listen. I can't work anymore, but I can learn to paint, cook, clean, code. Most of all I can imagine.

In some ways, I wouldn't mind being trapped inside my own mind. Maybe I could finally figure out what the hell is going on in there, or at least why it's stuck in the 80's. But ceasing to interact with loved ones? Unable to express myself verbally or otherwise? I don't know if I could do that.

I've come to a season in life where I finally care about things like calculus, and reading Marcus Aurelius, and listening really hard to Theolonius Monk. I need to perfect my bouillabaisse sauce and study more Fauvist paintings. I've yet to watch Indiana Jones with the boys because they're too young. I haven't taught either of them to shave, or date, use a weed-eater, or avoid extended warranties. This is clearly not the time to lose my mind. I have a death-grip on what's left of it as is.

So I struggled through those questions, and I have to be honest; the slider more often than not ended up pretty far toward the "unbearable" side of the scale. I guess I've known all along, somewhere in the dark corners of my brain that things could go horribly wrong in this aspect. I've been so focused on the physical that I never considered how mental problems could affect my quality of life (not that they don't already, but you know what I mean).

We finished the session, went to Houlihan's for lunch and laughed and talked about life, the kids, work, A.A. Milne, friends, and mostly the calamari and ginger shrimp. Because that's what you do. We've learned that, as much as possible, you have to answer these questions, consider worse case scenarios, then go play a game with your kids, or drink good wine, or eat good food - whatever it is that makes life enjoyable for you. I suspect I'll never have to deal with any of this when it all comes down, but in the meantime, there is a whole world within and without and I know very little about either. There's no time to brood over it.

Some of you reading this have the same cloud hanging over you. We have a choice to let the anxieties and the what-ifs permeate our lives, or to keep living. The latter is the hardest. But we face this choice constantly and doing the former is to let the disease win. In which case, why are we fighting so hard to stay alive in the first place?

The Villainy of The Calendar

I'm really starting to hate calendars. I spend way too much time staring at mine and scratching my head.

Like everyone, we have normal life stuff that gets overwhelming at times. Kids's activities, doctor and dentist appointments, scheduling home repairs, and social engagements. Throwing a week long hospital stay into the mix every six weeks has complicated that more than I could have ever imagined.

Christie works nights, which works well for us usually. She works while we sleep, and the wee hours are generally non-eventful. She's home sleeping during the day so that if I need her (like the time the van got stuck in the snow, or if one of the boys gets hurt, etc.) she's home and can be roused to rescue us. We are currently a one car (van) family and therefore the boys and I aren't stranded at home all day without a vehicle since she only uses it at night. There are occasional conflicts, but friends are usually happy to give us a ride for late night events when she's working.

This is all fine until I have a hospital stay. During that week, she either has to be off at night or the boys have to stay with friends if she works. This requires careful planning. It's extremely diffficult to plan around her work schedule since it's posted months before I can schedule my visit. This usually means a lot of trading shifts, begging favors, or simply missing work sometimes. She doesn't stay with me every night, but the first night is pretty awful and she feels like she needs to be there. Not to mention she often has to work the night before my procedure, meaning she's been awake for close to 36 hours by the time she goes home the next morning. She's required to work at least three shifts per week so if my visit is from Wedneday to Wednedsay, there's no way around this.

Our Foley friends have been so helpful in this regard, keeping the boys several nights that week so Christie can stay at the hospital. But we're also the proud owners of the most neurotic dog on the planet.

Ah, the dog. Adopted before we knew we would be doing any of this. The dog who, though loved dearly, nearly passes out from stress and fright on a four minute car ride. Who must be crated when we leave the house lest she eat one shoe per person who has left. The dog, who cannot be boarded because she has panic attacks when one of the boys spends too long outside checking the mail. She is the poster child for adandoment issues. So with the boys at the Foleys and Christie at work or with me, we risk leaving the dog crated for 14+ hours. Inhumane, right? So we either have to have someone come over to let the dog out occasionally, or stay here with the dog. Fortunately, we have friends who are willing to do both. So we have options.

As you can see, this requires planning each and every night that I'm admitted, down to the details. People are willing to help, but they have their own lives too. Committments at certain times of the morning or evening requiring the boys to be picked up or dropped off at particular times. Christie to be back home for the dog within a certain number of hours. It's not that it can't be done. It just requires an insane amount of planning.

Generally, we get everything set up, and the whole thing falls through the week before. The first time, the hospital wanted to change weeks because they didn't have a room for me. After much cajoling and frustration, they found a room. Changing days, even by a single day, affects everything. Childcare, work schedule, dog situation, transportation, etc. etc. etc.

The second time, we had to change weeks because no one mentioned that the cath lab would be closed on the 2nd of January. Last time, they neglected to inform us that my visits had to be no less than thirty one days apart, forcing us to change my stay from Wed-Wed to Fri-Fri.

This time, due to the never-ending, Antarctic, Jupiter-like ice-age that we're humbly calling "winter" here in Pennsylvania, family that intended to be here for my visit to help with the boys (thus allowing Christie to work some shifts during my stay) can't risk getting trapped in the polar-vortex and spending April trapped somewhere in the hills of Virginia. None of this stuff is purposeful, but it happens.

So we're scrambing. This latest fiasco, combined with Christie being out for surgery the last four weeks, has made it unlikely for Christie to be off work the night of my procedure. Meaning she would have to be up at six on Wedneday, spend most of the day at the hospital, likely get no sleep, and then work a twelve hour shift -taking people's lives into her hands- pick up the boys, and drive home. Alternately, she could leave me at the hospital and get some sleep before going to work. Is she really going to be able to sleep while I'm half an hour away getting a wire punched into my jugular vein and threaded into my heart? (Hint: no)

The complications of moving her schedule around and taking care of the dog may seriously mean we have to cancel this coming visit. The logistics of trading shifts this late in the game make it nearly impossible. Not to mention that everyone else who wants to help us out is in limbo, waiting on the unlikely call to confirm or deny a shift trade for Wednesday. If we cancel, I lose a week of 1A time which not only looks bad to UNOS, but could be crucial in determining candidate priority when I'm higher on the list. To complicate matters further, Christie will be changing units soon, meaning day time orientation for at least six weeks. It may be July before I can be admitted again. I don't even want to think about what that will look like to the UNOS board.

For those of you reading who are coming up on this season in your journey, prepare for it to be tough. Even when you have people to keep your kids, it's hard on them to be away from both parents so often. Prepare to be worried about your spouse's job security. It all plays a part, and there's really no provision for it. You just have to do it or not. I suspect most transplant candidates reading this are empty-nesters or retirees, which simplifies things to a large degree.

Thing is, I know this will become more difficult. We will reach a point where these visits aren't planned ahead of time, but dictated by my fluid retention and cardiac output.  Then we'll be planning on the fly. Hopefully the boys are old enough by then to be home alone more, which would also solve some of the ridiculous dog problems.

Until then, we continue to fly by the seat of our pants. Never a dull moment. But some days it feels like my waistband is wearing out.

The Quiet Between The Storms

This could actually be a reference to our weather here in Pennsylvania lately, but life at home between hospital stays is quite valuable at this point. There is a fair amount of simply sitting around, reading, playing games, or staring into space - all healthy for the soul and brain in my opinion.

Christie is also recovering well from her gallbladder surgery, though finding safe food to eat is challenging. Super low-fat is recommended, which makes proteins difficult - no beans, no dairy, no red meat, chicken, or pork. We're eating a lot of seafood but those options start to run out quickly. For people who love food and cooking so much, this is going to be tough. Hopefully she heals up quickly and can back to a more balanced diet. We have a lot of concerns about "low-fat" foods since they usually replace the natural fats with all kinds of chemical crap that's actually more unhealthy for you. But the digestive system wants what it wants, and right now, fat is persona-non-grata.

Our friends, Marc and Ellen Gecker, brought groceries the day after Christie's surgery, as well as
strawberry shortcake with low-fat Kool-Whip since she can have all three ingredients.

Marc played his increasingly popular "Birthday Song" for Christie (who has requested that any pictures of her be left out of this post, in view of having just had an organ removed)

The rest of the week has been pretty lazy. Eating leftovers an trying to avoid going out into the Antarctic temperatures.

The boys decided they are definitely fans of strawberry shortcake

Epic battles of Indigo, Settlers of Catan, Carkasonne, and Ticket to Ride were waged (we pulled the card table into the living room so Christie could sit in the recliner).

Blitz is happiest when everyone is home.

Rich decided to hand-sew a stuff animal/octopus/one-eyed squid thingy, and with a little help from mom, finished it in a day. Read more HERE on his blog.

The picture is blurry because Brennan is beating all of our tails in Livingstone so quickly, the camera can't even capture it.

In between, the boys have spent the afternoon with a group of friends across town playing Dungeons and Dragons, we've watched the Jackie Robinson movie (42) accompanied by much discussion about the civil rights movement and Jim Crowe, Rich learned to grill tilapia, and they're both eyeball deep in the Game Maker program, coding some simple games. I love that they're learning this stuff. We have more time since we dropped Cyber school at the beginning of the month (more on that HERE at our homeschool blog).

Next storm due the last week of March. We expect a visit from my parents, about which we're very excited. Rumor has it they may stay a few weeks, giving us plenty of time to fatten them up and wear them out.