<Text Message From Mom> 08/02/15: Brian passed away peacefully at 5:20 today with the whole family around him.
There was way too much in my head, crowding around, jostling for my attention. Work. Death. Bills. Fatherhood. Family. Retirement, or lack thereof. Relationship. Dreams. Nightmares. I had to get out. I needed silence. So I left work Wednesday afternoon and rolled for an overnight on Mt. Tamalpais. As the din of San Francisco started to fade, the only sounds that mattered were that of my own breathing and the bicycle underneath me. Slowly, very slowly the noises in my head started to be replaced by solitude, exhaustion and, eventually, a sense of peace.
Sometimes we get out overnight for the camaraderie, or for joy or for exercise. Every now and then, I personally just have to go and try to find a little slice of silence to live in, even if only for a mere 12 hours.
What Choice, This?
It's 10:00pm Wednesday, April 9th. I’ve wrapped up my day job, packed up the car, had dinner with my family. It’s time to drive overnight, down the 880 to the 5, to the UCLA Medical Center in Los Angeles. Once there, I will submit myself to tests that determine whether or not I’ll be able to save a friend’s life. Her name is Serbrina Vasquez. She and her husband, Errin, have been dear friends of mine for 5 years now.
In reality this trip began nearly 11 years ago, when Serbrina was diagnosed with a fatal liver disease, Primary Sclerosing Cholangitis (PSC). She’d been having severe gastrointestinal issues and was initially diagnosed with Crohn’s disease. Her liver enzymes were highly elevated and the doctors couldn’t figure out why. It wasn’t until they did a liver biopsy that they figured it out. After being told she’d need a liver transplant within 10 years, Serbrina was put onto the bottom of the donor recipient list. Those ten years somehow managed to be relatively symptom-free in her daily life, but then things went downhill rapidly. In the last 18 months, she developed chronic anemia, esophageal varisces, edema in her legs and ascites in her abdomen, as well as a hernia due to the abdomen fluid build-up. Series of emergency room visits from extreme fatigue, infections, blood clots, encephalopathy and more saw her MELD score rocket from a 10 to 25-30, depending on the day. A score of 20-29 means a 19.6% chance of dying in the next 3 months. Higher than a 30? 52.6% chance of dying in the next 3 months.
Time is not on Serbrina’s side.
We always see those ads that say “Donate blood”, or “Register as a donor!” and think, “Well, yeah, I should do that. That’s a good idea.” But most of us never *quite* get around to it. In early February of 2015, after noticing a spike in Serbrina’s ER visits accompanied by a severely jaundiced photo on Facebook, I followed up on that whim and got my blood typed. In all honesty, that was about as far as I believed it would go. More than likely the blood type wouldn’t match, and isn’t it a really complex matter to donate a liver, anyways? Nope. When my results came back, the sheet said “O+”. Heather, my partner, looked at me and said, “Holy shit. You’re a universal donor!” which was enough to start the process. I texted Errin, “Hey. I got my blood typed. I’m O+. Universal donor. Who do I talk to about donating for Serbrina?” And that’s where I joined in on her path.
Between then and this drive to LA, a lot happened. For me there was a phone call and email exchanges with the Liver Coordinator at UCLA, blood tests for infectious diseases, and long discussions with my immediate family, closest friends and employer about the possible ramifications of the transplant. For Serbrina the process was far more frightening. She endured a week long emergency hospital stay, blood work, a possible cancer diagnosis and full body radiation scan. In the end, the doctors at UCLA deemed Serbrina cancer free and fit enough to proceed with the transplant. Should a suitable donor be found, of course. Her previous 3 living donor candidates had all been incompatible. I was going to Los Angeles as her possible fourth.
My entire day at UCLA had been planned out by Karyn Marks, the Clinical Coordinator for UCLA’s Liver Transplant center. 9:00am blood work. Noon consultation with the transplant surgeon. 2:00pm CT scans. In between the blood work and noon appointment I have a video call with my boss, our weekly check-in. If that seems like a pretty light schedule for a possible liver transplant, that’s because it is. This was merely Step 1. It’s an important one, the blood work to test just about everything and the CT scan which allows the doctors to decide if your liver and their body will even remotely fit together. But really, in the end, that’s about all there is to it.
Step 2, should things proceed that far, is a little more intense. There are consultations with every doctor involved. A Cardiologist, a Hepatologist, a Psychiatrist to make sure I am not completely insane, Social Worker to insure I have a job when this is all done and friends to haul me around while I recover, and more I probably don’t even know about. They also pull out the stops with a heart stress test to see if my heart will be able to handle the surgery, plus scans and x-rays galore.
Step 1, what I am down here for, is merely the doorway. Step 2 pulls me through that door and in.
After grabbing a bite to eat in the medical center’s cafe, it’s time to get things rolling. The lab is already crowded at 9:00am. Everybody here is waiting. Waiting to take tests. To get results. To talk to doctors. There is emotional weight everywhere. A little boy, who can’t be more than 4, ill and terrified, lays his head on his Mother’s arm for comfort while she strokes his hair. A teenager that looks to be the same age as Heather’s youngest, sits with his family. Legs bouncing up and down uncontrollably with nervous energy, his eyes, with red circles underneath them, are darting everywhere, taking in everything. I notice that my feet stink, and my heart is racing.
We’re all here for a reason. With the hopeful exception of some pregnant women, few of those reasons are happy ones.
Soon enough my number comes up. A very pleasant nurse draws a good amount of blood from me into color coordinated tubes. It would seem they have quite a few tests in mind, which is to be expected. It’s over in less than 10 minutes and I am set loose again.
I’m not expecting to see Errin and Serbrina until around noon. They’ve been scheduled to take part in the surgeon’s consultation with me but as far as I know that’s all they have on their plate for Step 1. A text hits my phone. It’s Errin. “We’re parking, where are you?” Apparently UCLA wants more blood work from Serbrina. That’s a recurring theme when you have a fatal liver disease. It’s all about the blood, what state it’s in, how dirty it is. One of the amazing things about the body is how much we take it for granted. Clean blood. Who ever thinks about that? Not me. Probably not anyone, unless they have to. And if you have to, it’s probably because something has gone horribly wrong.
Errin meets me at the steps to the lobby. Serbrina is inside with his Pops. That’s what he calls his Dad. Pops. “Serbrina is a little emotional about this, man.” he tells me. “I mean, I am, too, but she really is.” We walk in and Serbrina just breaks down into tears and hugs me. It hits me then, like a proverbial anvil dropped off a cliff. This is a woman who has lost all hope. No growing old with her best friend, partner in crime, husband. No watching her nieces and nephews grow up. No children of her own. The only certainty Serbrina really had is an early death by liver failure.
Nothing else will save her life but a liver transplant. She’s in Stage IV liver failure right now. And here I appear, with O+ blood and, in theory, a healthy liver. It’s the best glimmer of hope she’s had in over a year, since her downturn and liver failure.
Serbrina is one of nearly 17,000 people on the donation waiting list. Only 6,000 transplants happen a year. Of the 11,000 people who don’t get a transplant, over 1,500 of them die yearly, waiting, hoping, praying. Non-living donors, as in those of us who get the little “donor” sticker on our drivers licenses, are the most common and preferred method. The doctors only have to do an invasive surgery on one patient. The donor is well past caring. The availability of these types of donations depends on where you live. Steve Jobs, while living in California, got his liver transplant in Tennessee. Why? Because there is a shorter waiting list there. California has one of the longest waiting lists in the nation. For people like Serbrina, who lack that kind of monetary and political clout, there are no other options than to line up and wait right where they are.
There is one way to get around that line, and that is to make a line of your own. One patient. One living donor who says, simply, “My liver is for that person.” That’s me. So here we are.
Errin and I catch up while Serbrina goes in for her blood draw. He is just out of the hospital himself a few days prior with a broken collar bone from a bike crash. We both have a penchant for riding our bikes on long, ill advised trips. In fact, that’s how we met. We trade war stories from recent rides, compare notes, talk about friends we don’t see near often enough. I ask why his Pops is here. Errin tells me that since he can’t drive and Serbrina is having a hard time physically, his Pops and her mother have been lending a hand. They even stay with Serbrina while Errin is at work, making sure she’s OK.
After her blood is drawn, we go wait outside the Pancreatic Disease center. I take my work call, Errin, Serbrina and his Pops hang out, talk quietly. They’ve been here before, in this nook, many, many times. These are well worn seats and long established habits.
For the surgeon’s consultation, I’d been told to have a “loved one” present to ask all the questions I’d forget to ask. Which is smart. UCLA wanted to make sure there would be someone there who would look out for me and my best interests. Heather couldn’t make the trip down, but was able to get free from work to attend remotely via my laptop’s video camera. Upon arrival, it was apparent that our transplant surgeon, Dr. Fady Kaldas, is something of a force of nature. His presence brought the energy level in the little examining room up considerably. For the next hour, we get an educational tour de force on living liver donations.
The numbers are daunting. While there is a donor fatality rate of less than 1%, they do happen. In 2010 a man in Colorado died while donating to his brother. Nationally, there is up to a 60% chance of complications for the donor during and after the surgery. Now, mind you, complications mean absolutely any little thing that doesn’t go according to the official plan - like needing more or less anesthesia, adverse reactions to medicines, minor infections, etc. At UCLA those percentages are much lower, less than 40%. Also, my liver will not recover back to 100% functionality. The best case is 90%. One of the biggest reasons for the consultation, it turns out, is to have a big reality check for me. There are a lot of risks involved for the donor and absolutely in no way, shape, or form are there any physical benefits whatsoever.
But all is not gloom and doom. With great risk comes great reward. Of 2,543 living donor liver transplants between 2000-2006, 75% had a successful liver survival rate after 3 years. 66% had a successful liver survival rate after 5 years. Past 5 years nobody seems to be willing to say due to the relative newness of the procedure itself. There just isn’t enough data to know. All of these are much better than Serbrina’s current number, which is a 53% chance of NOT surviving the next 3 months. In truth, without a transplant, her chance of survival decreases with each passing week.
When the presentation and questions are over, Dr. Kaldas asks Errin, his Pops, and Serbrina to leave the room. After the door closes, he quietly informs us that if I want, I can pull out at any time. He’ll make a medical excuse to tell everyone so nobody will know. I can go, free and clear. We say our goodbyes, Heather signs off, and I proceed to my final appointment, the CT Scan.
His words echo in my head while I lay in the CT scanner. I can go, free and clear, and nobody will ever know. Except me. I’ll know that I had a chance to save Serbrina’s life, and I didn’t take it. If she succumbs to her disease, I’d never be able to look Errin in the eye again. I won’t be able to face myself in the mirror, nor look at my son and say, with a straight face, that one of the highest callings in life is to help those in need.
People keep telling me that by joining her journey I am being brave, or somehow noble. Honestly, to me, I am none of those things. To say so misses the point completely. Anyone can do this. What choice, this? There is no choice to be made. All I am is someone with a healthy liver trying to do the right thing. I honestly, with all my heart, believe I am doing nothing more than anyone else in these shoes would do.
If there is a takeaway for people from my experience, it is this: Saving a life is simple. Donate! Donate blood. Sign up to be an organ donor the next time you renew your driver’s license. Those organs won’t do you any good, anyways, should something untoward happen. And, if you’re in a place in your life where you are able, sign up to be a living donor. Even if you don’t know the person whose life you may be saving, your donation will give them a future. Two lives are better than one.
It all started some months back when Jason, aka Gnat, set off a discussion amongst a small group of us. The topic? A fatbike only bike-packing trip along the Kokopelli Trail to celebrate his birthday with Glenn, Eric, Lelan, Jim, Bobby, Brady, Cass, Tim and myself. The Kokopelli is a gorgeous, 142-mile, very tough, multi-use trail connecting two of the great meccas of mountain biking in the United States: Fruita, CO and Moab, UT. We’d each have to pack in several days worth of food and a good day and a half’s worth of water, or more. This was not going to be a fire road jaunt from service area to service area. Jason had something else in mind. The route featured a ton of technical single track, rocks, places where we’d carry our bikes up embankments, and long stretches of desert. Hearing about it was more than a little intimidating. Time passed, work piled up, money got short, training time never appeared, home life stress multiplied exponentially. One week before the trip and I wasn’t so sure I should be going at all. But this was Jason, one of my best friends I only get to see once every two years, if that. While there was every logical reason for me not to go, there was no way I could back out.
Now, like I said, I expected to have a little bit of a tough go from the start, as the British would say. I was dead wrong. I had a MASSIVE bit of a tough go from the start. As soon as we left Fruita, where it had rained on us while camping overnight, it started to rain again. Before we even hit the trail head, my legs were letting me know what they thought of the whole idea (hint: not much) and my back tire went flat. Twice. Like a space cadet I had neither the tool required to affect the fix nor the supplies to fix it. Luckily, Bobby had both and was kind enough to lend me a hand. This is also the guy who brought along a full repair stand and toolbox in his truck. You know, just in case someone needed a major bike repair done before we left Fruita. He comes prepared like that.
When we actually got to the trail, things got worse. In the places we could ride, the mud was slick and splattered all over everybody. In the places we couldn’t ride we were pushing our bikes, fully packed with camping gear, food and water, up and over steep, rocky inclines. It didn’t take long for the bottom of my shoes to get packed with mud and small rocks. The muck made it impossible to get in or out of my clip less pedals, which meant I started crashing. Often. My shins and forearms became covered with bruises, cuts and scrapes. To say that my mood, which wasn’t great to begin with, started to nose dive rapidly would be an understatement. I got so frustrated at it all that I almost left the trip entirely. We came across a railroad spur that led to the local highway and it was all I could do to not ride out and go back to Fruita.
But here’s the thing—for every down, there is an up. This would be proven, time and time again, along the entire Desert Ramble. Some concrete examples:
It was a terrible first day, but Bobby was kind with is tools, I saw incredible scenery every single place I turned my head, and I got treated to a double rainbow at the campsite. I endured a wet, dismal second night in a row on the trail. It was so bad that Glenn slept with his rain jacket draped over his head and torso in order to try to stay dry while he slept. But then I woke up and discovered that hot water, a little Maker’s Mark, oatmeal and raisins make arguably the most delicious trail breakfast I have ever had. Later that same day, after riding and hiking through, shocker, more mud and rocks while collecting more scrapes, we were treated to golden leaved cottonwood trees, and a sunset that literally made the clouds look like they were on fire. And, a dry campsite! After two nights of sleeping in the rain, a dry place to sleep and the ability to have a group dinner is something special. The simple pleasures are often the best kind.
I could go on, offering more proof and talking about the long climb up Sand Flats Road and the views, tourists, cowboys and cowgirls you can meet out there. Or about the exhausting slog that is Kane Creek Road and the once in a lifetime experience of watching a massive, blindingly bright full moon rise over the canyon walls. I could talk about cattle drives that take over state roads, scraping the length of your shin on a huge rock after falling over in exhaustion but recovering in time to take part in a 27-mph, fatbike paceline down the highway, the groans of despair at the sight of ANOTHER steep hike a bike and the sounds of laughter as we compared notes on life, being Dads, camera equipment, relationships, bikes and careers over whisky and a campfire.
People sometimes ask why, in this life I live with not enough time in the day, do I go on bikepacking trips like the Desert Ramble? Why, if I end up suffering and struggling, do I keep going out there? The answer is simple—it’s for the moments like those, with friends like these, which happen on each trip, that are too numerous to recount in one sitting. Whatever suffering and struggling that comes along as the price is absolutely worth it. It may sound trite, but you can’t get these kinds of experiences, see that kind of beauty, sitting at a desk or on your living room couch.
(Huge thanks goes out to Jason for organizing the Desert Ramble, and to Glenn, Eric, Lelan, Jim, Bobby, Brady, Cass, and Tim for their friendship out on the trail. If you’ve never ridden the Kokopelli Trail, I can’t recommend it enough.)
500 miles of bikepacking down the Lost Coast of California, captured with film.