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.
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.
