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.

Update for Fundraiser

This Post Is About Two Things. They Both Suck.

Now that I finally have a moment, I should relate the rest of my last hospital adventure. There are several things that went down (complete with an outline!):

1) Physical Medical Stuff

a) As I mentioned in the previous post, the doc couldn't get the cath in on the right side, so we went with the left (well, I say "we" - it was mostly just me saying "HOLY CRAP THAT HURTS LIKE AT LEAST FOUR OF THE SEVEN HELLS," and the doc saying, "okay, we'll try the other side," and me yelling "AND WHY AM I EVEN AWAKE RIGHT NOW?" and the doc saying, "give him more," which we both know means more drugs because we have an understanding that when he is stabbing a wire into my heart I DON'T WANT TO KNOW ABOUT IT UNTIL IT'S OVER).

b) The reason it wouldn't go in on the right is because it's probably occluded with scar tissue. This means that the right side is no longer any good for heart caths. So we're now going to be very careful with the left size -using smaller caths and doing them less often. I may not go back in until August. If the left side gets buggered up, no more caths for me, meaning no admissions, no IA time, and serious problems with getting weekly biopsies post-transplant. The implications of all that are, not to put to fine a point on it, really really grim. No, I haven't lost any sleep over this, why do you ask? 

c) My initial bloodwork showed my potassium at 2.5. A normal person's body maintains a potassium level of around 4. So when it's below about 3.5 you get really sick, or melt, or turn into a pumpkin...or something. All I know is that I felt like doody on a stick for about 3 weeks prior, couldn't sleep, sketchy appetite, headaches and nausea, feeling disoriented and foggy...so about normal, only turned up a few notches. Once they got my potassium up, I felt so much better. Problem is it's impossible to test your potassium at home. So I'm getting blood drawn twice a week now, and trying to take a lot of supplements, eat apricots, pistachios, and potatoes, and drink chocolate soy milk, all high in potassium.

d) I seem to be keeping up now, but my body is dumping a LOT of potassium every day. Why, suddenly? Because the diuretic I'm normally on is "back-ordered" (meaning the RX company knows lots of people need it, so they've manufactured a "shortage" in order to bring it back to market at a higher price next month. In pretty much any other country in the world except Nigeria, companies can be fined out the wazoo for doing that, but here, they will be eligible for a government subsidy to help them recoup their lost revenue during said "shortage." God Bless the U.S.A.). So because the new diuretic has an adverse effect on my postassium retention, I'm taking 10 (ten. onetwothreefourfivesixseveneightnineten) Potassium capsules per day. While trying to keep my fluid consumption down. Yeah, I missed that physics class too.

2) Financial Med Stuff

a) In light of owing Tufts Medical Center in Boston approximately $4,734,283,102.45 (a totally not-made-up number), I've been really dilligent to make sure everything is filed with insurance and paid properly so our co-pays are as small as possible. Note that I - me - took the initiative to do this. I called them, many times. Something got filed wrong with Medicare, who now doesn't want to pay. I've been on the phone with Tufts and Medicare multiple times trying to help them do their jobs (a fool's errand).

b) When we moved, I called Tufts with our new address and phone number, asking AGAIN if the issue had been resolved. Talked to an accounts manager, blah blah blah. It's in review, we'll contact you soon.

c) A few weeks later, call back. Same story. "I don't want it to end up in collections," I say. "I want to pay my part, but I want Medicare to do their part first so I don't overpay," I say. "We'll be sure to contact you," they say.

d) Friday, receive a call from, guess who? If you guessed Collection Agency, you win the gold star! I laughed. I cried. I asked if Medicare had paid on it yet. I was informed that they had not.

e) I advised said Collection Agent that Tufts Medical Center could choose one of several options:

i) Kiss my left butt cheek.
ii) Sue me. I have a 25 Year Anniversary Boba Fett action figure that should fetch somewhere in the neighborhood of $300, though that's only .000000000072% of what they think I owe them (there's some kind of math error there. I'll work it out later).
iii) Send a heavy to pound it out of my very flesh because:

• They're not getting a penny from me. Not even my co-pay. They can eat it.

• I tried to do the right thing and initiate contact repeatedly to make sure the bill got paid, despite the fact that it was mostly their fault Medicare balked. No more. I've now become "that" person who doesn't give two rips and half a jelly doughnut if they ever see a red cent.

• I've said it before and it makes people mad (which is strong incentive for me to say it again): This is how sick people get treated in this country, every. single. day. My European friends can't fathom what it's like to have a chronic illness and the added stress of trying to figure out how to pay for it. They know they pay more taxes, but they tell me they get good medical care in a timely manner and they never get a bill. Because good governments take care of their sick. Because every developed country and most un-developed countries (except Nigeria) have some form of socialized healthcare and don't punish their citizens for being sick. Why do we do that here?

• Oh yeah, Socialism. A term that most Americans can't define given the crappy state of our education system. They vaguely think it has something to do with Hitler. Or some Russian guy. (wrong on both counts - if you're an American, surprise! You're already a Socialist. You just don't know the definition of the word - except in healthcare. We're all Socialists except for healthcare. With healthcare we're what's known as "Sucks To Be You-ists."

Look, I'm not trying to offend anyone, but we've got a serious problem when even the people who are TRYING to do the right thing end up getting turned over to a Collection Agency. I can even afford to pay my part of the bill, unlike most of the people they're hunting down.

And some of my dear readers don't know me in real life, but I promise you, I'm a really nice guy. I take my bills seriously. I try to do what I say I will so far as I'm physically able. The fact that I owe people money for caring for my medical needs actually bothers me. But when I get slapped in the face for trying to do the right thing, I'm really tempted to do the wrong thing, which is to become uncommunicative, evasive, and apathetic.

So tomorrow's phone conversation with them should be fun. If I decide to make it at all.

There didn't seem a good place to put this in the
 blog post so I'll just leave it here for everyone to ponder: Eric J. Beyer, Executive CEO of Tufts Medical Center in Boston had total compensation of $744,722 in 2013. My outstanding bill is $1000, minus what Medicare owes them (probably around $750).  Best healthcare system in the world? The numbers speak for themselves.

Variety is the Spice of Life

It's never boring, that much I can tell you. Every hospital stay presents me with some new challenge, new information to process, more opportunities to say, "um....huh?" Like Wednesday night when I was given a shot in my stomach without much ceremony or fanfare.

That's probably a normal thing for some people, certainly for the nurses, but as I have never been stabbed in the stomach before, I felt that this was absolutely not a normal situation.

As much as we'd all like to believe that medicine is a highly refined, scientific process that can be depended on to yield the same results every time, it's just not. Doctors trained in the same place, working in the same group can hold wildly differing opinions about how to deal with the same problem.

I went toe-to-toe with atrial fibrillation for several months in 2011 and ended up on Amiodarone, an anti-arrhythmic that has kept me in a normal rhythm since. But that won't last forever - HCM eventually finds a way around it, which is how many HCMers end up with an implanted pacemaker or defibrillator. Because the medication can cause blood clots (previously referred to as Brain Clots of Death (tm)), I must also take a particular brand-name blood thinner called Pradaxa, created from the teeth of leprechauns and the blood of unicorns, laced with the finest threads of dwarfish gold and silver guarded by an angry dragon (this is seriously a more plausible explanation for the cost of the medication that the one given to me by the research department crony at Boehringer Ingelheim pharmaceutical, three time winners of my "Best Performance in Preying on the Sick and Old" award). But I can't take it while I'm here because it takes 48+ hours to flush from my system, and that's too long to wait when there's a viable organ that could go to the next person on the list who's ready now.

The problem with blood-thinners is that when I'm in the hospital, and therefore more likely to receive a heart than at home, blood thinners are not my friend. We have to walk a fine line between avoiding the Brain Clot of Death (tm) and getting passed over for a new organ because of too much blood thinner in my system.

Not surprisingly, all five of the docs in my cardiology group have a different philosophy about this. One gives no blood thinner, assuming (correctly, probably) that I am active enough when I'm here that I'm unlikely to form a Brain Clot of Death (tm). Why, between typing this I've been exercising my reflexes and agility through a rigorous workout regimen involving jumping jacks, short runs around the unit, and I don't mind telling you, a pretty sophisticated gymnastics routine I've been working up. Okay, actually I almost knocked over my urinal and caught it before it fell over and spilled. And I also played a Batman game last night for a few hours. Blood clots are terrified of me.

Two of the other docs believe in a Heparin drip that keeps my blood nice and silky the whole time I'm here. When asked why, their response also has to do with unicorns and fairy dust and such and under hard scrutiny must confess that it just seemed like a good idea at the time.

The doc who admitted me Wednesday actually tried to strike a balance between the two. Instead of nothing or everything, he went with a daily shot of Levaquin, which holds you over for a period of time in case I stumble into A-fib again.

The great thing about the docs in the Penn State Cardiology group is that they LISTEN. When I explained my rather vociferous aversion to daily shots *in the stomach,* he conferred with the other docs and agreed that I am active enough to go without anything for the week (I'm convinced it was the cat-like-reflexes demonstrated in my urinal catch that swayed him). So no more shots. And I got to the bottom of the blood-thinner mystery that has nagged at me since my second visit back in February. Not a life changing victory, but I'll take it.

Heart Problem? What Heart Problem?

HAY GUYS DID EYE MENTION WE HAVE A FUNDRAISER GOING ON?


I'm supposed to be moderately sedated right now with a swans cath sitting in my heart. But I'm at home typing this and listening to my parents teach Rich how to use a gas-powered lawn mower in the front yard. This is better by a mile.

I thought it suspicious yesterday that I'd not heard from my coordinator about my admission time this morning. When I called, I could immediately tell something was catty-wonkus because Fran (my coordinator) was using terms like "circle jerk" and "cluster....youknowwhat," and such. She is extremely professional and extremely frank about the short-comings of our current medical care system. And I trust her implicitly.

Apparently, my insurance company has decided that the frequency of my visits are, well...too frequent. They requested a "peer to peer review" which essentially means two of my doctors have to confer and agree that I absolutely need to be admitted every six weeks. Insurance will also ask to see my numbers - ejection fraction, cardiac output, etc.

The timing of my admissions aren't necessarily based on my health at any given moment (though they will be before this is over), but rather on when someone can keep the boys, when Christie can get off work...ya know, LIFE. Six weeks seems about right for my health too because it's around that time that my fluid retention goes haywire and I benefit from the IV inotropic medications.

If the insurance company looks strictly at my numbers, they will see a 43 year old male who is the picture of health. HELLO, THIS IS HCM - EVERYTHING LOOKS GREAT UNTIL YOU DROP DEAD ON THE BASKETBALL COURT. But wait, I'm sure they learned that in medical school. What's that, you say? Insurance coordinators don't attend medical school and they may not understand the subtleties of non-obstructive diastolic hyper-tropic cardiomyopathy with low graidents as well as an actual, medical school educated cardiologist? I'm shocked. SHOCKED, I say. 

The only time my numbers freak out is when I exert myself  - like walking, or sitting up, or digesting food. Not that I do those things on a regular basis. That would be crazy! So as long as I stay away from things that humans do, I should be fine until the insurance company can afford for me to be admitted next time. I understand. Blue Cross/Blue Shield is strapped for cash these days - their CEO only "earned" $12.9 million (NOT a made-up number) in 2013. Just kidding. By "earned" I meant, "went to some meetings and had cocktails after." If I'm goofing around and having heart failure all the time, how is the poor guy going to afford to keep his labradoodle in fresh sweaters, or pay for his mistresses' hair removal treatments? SOMEONE PLEASE, THINK OF THE CEO'S!!

So while this assboat is out playing golf with his bad haircut, I'll just take more and more meds this week in a vain attempt to keep the fluid under control. No idea how that is going to play out - hopefully the docs go to bat for me justify the frequency of my admissions.

On top of that, the patient population at Penn State was ridiculous today, so I would have been more than 24 hours getting a room (likely). Since my parents are visiting this week and Christie's schedule is more flexible this week, we just let them bump it to next week.

Know this: if the hospital is overpopulated, the nurse to patient ratio is off-kilter, which runs them ragged and reduces the quality of care for the patient. Yet, despite the rip-roaring business the hospital is seeing this week (and many other weeks, because this is a common problem) - it will not result in pay raises or better perks for the nursing staff. And then they will moan and cry about the nursing shortage. While the CEO likely makes $12.9 million (TOTALLY a made up number) this year.

So I'll enjoy my freedom for one more week and get back to you all with my 5-point plan to end Blue Cross/Blue Shield's reign of opportunistic terror. It begins with a strongly worded letter writing campaign filled with pejoratives and words like "succubus" and "rat-vulture." Sharpen your pencils and meet me back here tomorrow.

Money Can't Buy Me Love

Hello relatively healthy people! Sorry I've been away for a while. The day after my last hospital stay I started feeling sick and have been that way ever since. The docs say it was a cold and allergies, I'm convinced it was a touch of Ebola.

Nevertheless.

A friend of ours (Ellen Gecker, whose husband Marc was actually the realtor who was instrumental in our move to Hershey last year) has been so gracious as to set up a FUNDRAISING WEBSITE. I won't spend much time explaining this since the details of *why* we need a fundraiser are detailed HERE. You can click the link above or check out the widget directly to your right.

So check it out and most of all, share it anywhere you can - Facebook, Twitter, Google +, Pony Express, etc. The more people see it, the better chance of it ending up in front of Bill Gates.

And HUGE thank-you's to everyone who has already contributed. I promise we'll use the money to pay for medical related expenses, no matter how much I'm dying to play the new Dark Souls game and buy a Fender Stratocaster. For those of you who can't give - I really, really appreciate your readership and time (comments are appreciated too!). Send us good vibes, prayers, or whatever it is you prefer to send. (TTLGers - please no inappropriate photographs or dead animal "art." You know who you are).

Thanks to Ellen and Katherine who set up the site, and also to Stacy who got the ball rolling. You guys (gals? that always sounds patronizing to me...) are awesome.

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.

It's All About The Benjamin's (revisited)

There have been a LOT of discussions about medical expenses and questions about finances lately from some of my newer readers. I wrote a post back in May of 2012 in regards to finances re: chronic illness. So much has happened since then, so I thought I would write a more coherent explanation that reflects the current situation.

LET ME BE CLEAR - this is not a plea for pity or financial help. But, I feel strongly that many fear or oppose universal health care because they have spent most of their adult life in the secure confines of group insurance, local physicians, and short-term health problems. It's not a political thing. But I find the financial woes of the chronically ill are either horribly misunderstood or a complete mystery. That's not fair to the patient, their families, and those who look on helplessly. I hope to shed a bit of light on the link between illness and money (or lack thereof).

It's ironic that money was not too important to us in the early years of marriage. Now it looms over every decision we make. It's not an uncommon story. When I was diagnosed, we owned a successful service business and I was making money playing music for the first time. We had a comfortable lifestyle, a nice rent house, and expendable income. However, we were only six years into our marriage. We were on the brink of building savings, buying a house, investing a little.

When I was diagnosed, everything changed. Our potential rent-to-own situation collapsed, we had to sell the business to break even - meaning we both lost our jobs. Because we worked for ourselves, we did not have group insurance. We had a single-user policy that covered clinic visits and hospitalizations, but no maternity or prescriptions. Christie was excluded from any substantial coverage due to pre-existing conditions. This doesn't seem like a bad deal until you realize that my diagnosis and testing, though extensive required both co-pays and deductibles, and a lot of them. My medications exceeded $800 per month. This was during a period where we had absolutely zero income. It took Christie some time to find a job, but by then, we were behind on car payments, credit card payments, taxes, and utility bills. We moved in with her parents (1.5 hours away from our previous life) and spent a lot of gas money driving back and forth to work and the ministry we were involved in at the time. It took me 2 years to be approved for disability, and I was not allowed to work during this period without jeopardizing that.

Our families helped us when they could and we eventually got back on our feet to some degree, but it was hard to catch up, meaning we went without a lot during those following years. There were few procedures and Christie's insurance paid some for prescriptions - even then they still exceeded $450 per month.We struggled during that entire time to meet medical expenses and monthly bills, mainly because we were living on two small incomes and trying to continue pastoring a small church with no compensation. 

Fast forward to 2010. Realizing that Christie needed a dependable career, we sold our house and spent it all to put her through nursing school. Many eggs - one basket. Though we had grants, I couldn't work, and we had to fund basic living expenses with student loans and credit cards. During Christie's last semester my health took a downward turn again. We were almost completely out of the financial mess that started 10 years earlier. Now we had to finance a trip to Boston because I needed to see a specialist - there was no one in the mid-south who fit the bill. Plane tickets, transportation, hotel, food for several days. Some friends helped with these expenses but it was just the beginning of several years of financial ruin.

We tried to work with a transplant team in St. Louis, hoping I could be treated there and avoid a move to New England. We made five separate trips to St. Louis between 2010 and 2011. We estimate that between gas, hotel, food, co-pays, deductibles, and lost wages, each of those trips cost us in the neighborhood of $1000-$1200 (not including out of network payments and the medical expenses). That's conservatively about $7000 in six months - on a nurse's salary and just starting to pay off student loans. Christie had started a new job - no personal days, vacation days, or sick leave saved up. We moved from our nice rental into a cheap-o apartment to make ends meet. We were still trying desperately not to fill up our credit cards again.

When we realized St. Louis wouldn't list me for transplant, we had to look to Boston. Christie took a job with a travel company hoping we could scope out a town nearby to settle. Crap insurance, massive deductibles and prescriptions co-pays. When a normal person is sick, they may go to the doc one or two times. When you're chronically ill, scarcely a week goes by that you don't have some type of appointment, consultation, blood draw, or test. Those small co-pays pile up quickly.

And think about the way prescriptions work for chronically ill people: I was hospitalized three times in January of  2012 for atrial fibrillation. There's danger of stroke after such incidents so they prescribe a blood thinner to keep your blood from clotting and sending a Clot of Death straight to your brain which will kill you within seconds

"So," says the doctor, "there's a generic thinner we can prescribe, but it's not as successful in preventing Brain Clots of Death and gods forbid you should get one of those while driving down the road with your kids in the car and crash into an old folks home where the local children's choir is singing...OR, we can prescribe the name brand drug (Pradaxa) which almost certainly guarantees that you will not in fact accidentally commit vehicular man-slaugther. Which one would you like?"

Well, that's not a trick question. Problem is, the co-pay for the name brand that keeps The Clot of Death at bay was a whopping $90 per month. As for the ER visits, Christie was between contracts with her travel nurse employer and we had minimal insurance coverage for the gap. (Next month, I will finally pay off the bill that I started in February of 2012. It was nearly $8000). 

I take 8 pills every day (some several times). I'll leave you to guess how many of those are generic and how many are name brand to prevent such things as The Clot of Death. When it comes to medicine, it seems like we were behind from the get go. I remember some of the early months of illness when I desperately needed to get a prescription filled but we didn't have $550 laying around and had to wait until the absolute last moment, thankfully the day before Christie got paid, so we could write a check that wouldn't bounce. Hand to mouth is a conservative description. My parents helped when they could, but they still had two kids at home. Most people fill prescriptions 90 days at a time, or buy them early, but we were always so far behind that it just wasn't possible.

While we traveled, we made trips to Boston about every six weeks for two years from wherever we were. Pennsylvania, New Hampshire, Norwalk Connecticut, Springfield, Massachusetts. Depending on the driving distance, we estimate (setting aside medical bills) that each trip cost somewhere between $800-$1000. That's another $8000 per year. It's no mystery where our "expendable" income went. Hotel rooms at $200 a pop in downtown Boston, food for 4 - not fast food because I have to watch my sodium - at $50 a pop for 2-3 days. $20 here and there for subway passes and taxi fares. And by trying to make the trips not such a drag for the kids, probably another $100 for admission to aquariums, children's museums, and anything to offset dragging them around all over the place. On a nurse's salary and less than part time disability, it's simply untenable. Some years, nearly an entire 3rd of our income has been sucked away by medical related expenses. Even now, with good insurance, our out of pocket is $3000 per person or $6000 for a family. Looks like we'll hit the $6000 first, but that's nothing to be thankful for.


So we settled in Springfield, MA. Rent deposits, utility deposits, new household expenses, the cost of moving our furniture there from Arkansas. That whole fiasco was another $8-10,000, not including deductibles with a new insurance plan. Eight months later, we were told my Boston listing was essentially useless for reasons I have explained previously on this blog.

This spawned a whole new set of expenses - we decided to move back to PA, but we had to find a house. Cue another four month round of gas, meals, hotels, and lost wages as we made 4-5 trips to PA to house hunt. Our friends, the Foleys helped us out a TON by housing and feeding us during this time, but there were weeks when they were out of town or otherwise committed and we had to do a hotel. We tried to find a rent house, but my physical limitations necessitate some fairly specific features in regards to stairs, bathrooms, etc. Rentals are scarce in this part of PA to begin with. So we gave in and got a loan to buy a house. Another $8-15,000 for down payments, deposits, moving expenses. The home is older and we've already spent nearly $5000 just on repairs, electrical and plumbing issues, etc. - but we were in a frenzy trying to find a place to live and couldn't examine the house as closely as we should have. But again, the illness forces you into frenzied situations where you have to make quick, often expensive decisions to get the medical care you need - everything else is secondary, but it eventually catches up with you. The piper WILL be paid, one way or the other.

Current day: Not only am I unable to work and incurring medical bills, Christie has had her own problems. The worst, worst, worst thing that can happen to a family with a chronically ill member is for another member to have health problems. She's the breadwinner. Since July, she has suffered an extreme reaction to poison ivy, requiring antibiotics and 2-3 weeks of lost wages, a concussion - another 5-6 weeks of lost wages, and tomorrow she is admitted for gallbladder removal and a possible biopsy which could result in another 5 weeks of lost wages. And we've not yet met our deductibles - it's February. She's had this job for 7 months - again, no sick pay, no vacation time, all personal days used up.

The kicker to all of this is that transplant financial advisers tell us that our part of the transplant procedure will be around  $25,000 - $30,000, AFTER both our primary insurance and Medicare have paid their part. We can't even begin to think of saving for that while buried in credit card debt and previous medical bills. Then there's the exorbitant immuno-suppressant medications post-transplant that I will have to take for the rest of my life. There's the issue of the boys as well - HCM (my disease) is genetic. They will be tested again for signs of the disease in a month or so. There is a 50% chance that we could be looking at similar medical expenses for one or both of them - probably not a transplant, but if they are diagnosed, it's entirely possible we're looking at septal ablation, pacemakers, defibrillators, and more expensive medications. I don't want to borrow trouble, but as the Van Halen song says, "No light at the end of the tunnel due to budget constraints." 

There is nothing to show for spending this money. I am not "better" than I was at the beginning (though I'm receiving much better care), and there's no guarantee I will be in the end. There is no big screen TV, no new car, no vacation, no college fund, or savings accounts. We've been very creative in trying to simplify, have fun, and do the best with what we have. But Medicare doesn't pay for hotels, gas, meals, or lost wages. The fact that my disease is rare and we've had to travel half the country to get knowledgeable care is the root cause of our debt.

 I really hope I don't sound bitter in any of this - it's no one's fault, so being angry about it is just wasted energy. And money still doesn't matter to us all that much. We're not concerned that we don't have all the latest gadgets and a new car. But it's frustrating when your income disappears into thin air and you're still trying to figure out how to pay your kid's orthodontist bills. On the one hand, I'm grateful to live in a country where kids can even get affordable dental care. It could be much worse, as I am acutely aware from seeing so many worse situations in my years of ministry.

The point is, money isn't the point. Knowledge and information is. Healthy people just don't get it sometimes, which adds to the frustration of the chronically ill. Politicians and conservative news channels constantly lump us in with welfare leeches, illegals, and lazy people who defraud the system. Even Mike Huckabee - someone I consider a friend - once referred to the handicapped as "burned down houses," on national television. I have a great deal of affection for Mike. But that hurt. I've developed a thicker skin since then. It's not that sick people necessarily want anyone's charity. They just want a little bit of compassion and benefit of the doubt when it comes to their finances, rather than assumptions and stereotypes.

Here's my advice. You have a friend that's chronically ill? Knock it off with the flowers and cards. That's just more money in the trash. Pay their water bill. Watch their kids for free. Buy them gift cards to clothing stores and shoe stores. Buy gift certificates to restaurants. Take their car to get detailed and oil changed. Notice the things they can't or don't do that healthy people take for granted. We feel so grateful to be part of a community that has done many of these things for us - they pay attention. But these are the little things no one thinks about that get put off or neglected altogether to avoid going to collections for medical bills due to the very clinic from which they're receiving care.

And above all  - don't assert to them that their insurance should or does pay for everything. Unless you've hit the out-of-pocket limit years in a row or had to travel 300 miles to the doctor, they have forgotten way more about medical insurance policies than you will ever learn in a lifetime. Just assume that they're doing the best they can considering the situation and mow their lawn. They'll be more grateful than you can imagine.

Emancipation

So the day has finally arrived. Immediately after breakfast, Natalie (the same nurse I had last Friday) pulls the swan cath out. She can do this right in the room. First comes the most painful part of this entire procedure - removing tape that's been affixed to the most tender part of my neck for an entire week, along with the tape that was placed on top of that to keep it in place. Because of the awkward angle of the cath, it's really hard to keep it from leaning away from my neck, so it's a daily battle to keep it affixed - when it pulls away, it likewise pulls on the little stitch that affixes it to my neck.

So lots of tape. I prefer Natalie above all for this because she does it as gently as possible without being a wimp about it. Once the tape is off, I take a deep breath and hold it. Out comes the swan with one swift pull. I don't feel a thing.

So the yellow cord in her right hand down to where the plastic wrapping starts is
the part that stays inside the jugular down to the heart. You can see all the other tubing
that feeds into it for meds, diuretics, testing, etc.

Next, she cuts the stitch, which again, is painless. Then she pulls the sheath that the cath lab used to guide the initial placement. It's not much bigger than the cath itself but much shorter. Pressure on the insertion point for about 2-3 minutes, then an occlusion bandage to keep the nasties out until it scabs over.

Once the cath is out I have a few hours before discharge, so they leave me hooked up
to my portable heart monitor - you can see one of the leads at the bottom right.

So all that's left as I head home is the bandage and a lot of tape goo that won't come off for a few days. Our dog, Blitz, is really interested in the bandage. It smells funny because even though the area is scrubbed clean before I leave, the drainage over a week's time is funky.

I generally roll over onto my right side for the first time all week and catch a bit more sleep. Natalie disassembles all of Dr. DooDaa's decorations. It's a lot of stuff and has become a rat's nest over the week. We blame the float nurses and all of it has to go into the Bio waste bin.

Sometimes technology comes down to simple plumbing.

Dr. Doodaa looks naked and alone. I kind of feel bad for him, but alas,
he will go on to serve other patients until I see him again. Farewell for now, my top heavy friend.

I sleep a bit, get up, get dressed, and pack everything up while I wait for discharge. It's always tricky trying to figure out what time this will happen. Christie usually spends a while sitting around with me while we wait.

My IMC survival kit: Cooler with fruit juice and meals, talcum powder (because the meds make me sweat like Al Capone at an IRS audit), Kindle (for reading, but also texting, blogging, etc.), Transformer pajama pants - easy access for the urinal and super comfortable. Earplugs - an absolute must if you're going to sleep through the night. I have a private room with a sliding glass door so it's fairly quite anyway. Also, the nurses are really good about whispering at night and trying to minimize noise. With these babies in place, I don't even wake up when they come in to draw blood through the cath and change drip bags. Not pictured: My laptop - Steam, Blogger, Facebook, and Music Creator which I've spent most of the week on, mixing some songs I've been working on.

I also think I pulled a fast one on the cafeteria yesterday - just for kicks I ordered cheese pizza for lunch, which is absolutely not on the low-sodium diet, but probably more low-sodium than most of the stuff that is. They actually delivered!

Of all the pizza slices I've eaten, this was certainly one of them. It wasn't terrible, but it wasn't freezer-pizza bad either. I'm going to call it a victory and shoot for a cheeseburger next time.

A lot of ups and downs this week, but I hope this gives everyone a glimpse into what goes on while I'm here and takes some of the mystery out of it. I may not post as much while I'm home. I want to get the boy's homeschool blog going again and prepare for spring. Things to do at the house, writing and music to finish, new dishes to learn, book clubs, D&D clubs, game clubs, time with friends, new restaurants, good wine, Game of Thrones, Walking Dead, and Master Chef. So much to look forward to and time is precious.

Update on Christie: She goes in for gallbladder removal at 9:45 Monday morning. This *should* be a 1-2 hour surgery with an overnight admission. A pathologist will be present during the surgery to assess the situation. If he has any concerns, they will do a wedge biopsy which requires 3-4 hours, as well as a liver re-section, and a 3-4 day admission for recovery. Christie is trying to juggle her work schedule around this and hopes she won't miss much work. It's been a tough 8 months, between a violent poison ivy reaction, a concussion, and now this. She's understandably frustrated, but we'll figure it out like we always do. Thanks to everyone for your thoughts and prayers.