Australian Transplant Games 2016

Australian Transplant Games 2016

History repeats itself

Last week was my third time competing in the Aussie transplant games. And I made the same mistake the third year in a row.
The first year I really didn’t know much about it. I took a train to Newcastle, and just ran the 5K as a part of the opening ceremonies, and then took a train home. Just meeting a few people there, I realized I should have come for the whole week.
Two years ago, in Melbourne, I spent most of the week there, but only participated in about three days of events, and worked the other half of the time.
This year, I participated in four of the 9 days of events – and again, left knowing I should have done more. Yes, work, deadlines, a big event coming up. But this week is a chapter in the most important story of my life – the fact that I got a second chance.

People not Medalsolympian-poolside

The first question most people ask me is “How did you do? Did you win any medals?” It misses the whole point of the games. It’s a miracle any of us are even suiting up for the games, much less being competitive.
Every minute is humbling. You met another athlete whose story you can’t believe.
Meet Adam, who is under 20 but has had a transplanted liver for something like 17 years now, and smiles bigger that the length of the pool.

Meet Kate, the first woman with a heart + double lung transplant to complete a half-Ironman.

Meet Andy, who ran the 5k with me who has a double lung transplant. But his training has been rough lately – because he’s currently undergoing chemo for liver cancer.
Meet Rodney, who swam (incredibly well) who had a double lung transplant 18 months ago. When he got a silver medal, his eyes welled up with tears.
I reconnected with people I met two years ago.
After spending so much time around triathletes, all too obsessed with podiums and winning their age group, this group is a special one. Now, they still are putting everything out there, pushing themselves to the limit, and they are competitive. But the times and the medals take a back stage to the reason we’re there.
Lining up for the race is the biggest accomplishment for us, and that the success of any of us in the games starts with the gift from our donors, contains an incredible amount of luck, and then we add in our own dash of effort.
I watched a man over 60 years of age complete the 30k cycling road race – who didn’t even know how to change gears on a bike. He was pushing the bike up hills because he hadn’t figured out how to shift down. But his smile was the biggest of any of us .

Community

I still have a community allergy – I have a hard time being part of a group, even an amazing one like this one. I found myself often looking for a place to be alone and just take in what was around me. It’s a little overwhelming at times.

So, answer the damn question. How did you do?

time-trial-start

My worst performance was certainly the cycling 5k time trial – I didn’t warm up, and my lungs just felt terrible the whole time (which is no time at all in cycling). It feels pretty lame when you complain about your lungs and the person next to you doesn’t have their original ones.

The first ever triathlon at the transplant games was punctuated for me by two punctured tubes, so I had no way to complete the final 10k. I DNF’d but still ran the run course. Normally something like that would bother me for days. But the spirit of the games is too positive, too wonderful to let something like that bother me.

The Sunday 5k run is the best time I’ve posted (just around 20 minutes flat) though I think the course was 200m short. Still, the wheels haven’t fallen off (yet), and I was the fourth person across the line, and the second transplant recipient.  In the 30k road race, I managed to fight and hang on until it was down to the final five of us, until the last 400m, when I was subsequently out-sprinted by almost 100m.

I felt great about all of my swims, though as the day went on, I definitely had less energy and began to drag in the 400m. I was certainly slower than 2 years ago. I did backstroke in one relay, which makes me want to train for the 200 IM for two years from now.

España?

Si, con mucho gusto. The World Transplant Games are in Spain in July. Why not?

 

The gift: A decade of life from my cousin Diane

The gift: A decade of life from my cousin Diane

My kidney-versary is today! It’s been 10 years since my cousin Diane gave me a gift I can hardly fathom, much less repay.

December 21, 2004

I woke up in post-op in Methodist Hospital in Houston, TX, fuzzy from anesthesia. I asked how long until the surgery would start, and was informed that it was finished. In a groggy state, they moved me to Intensive Care as machines beeped around me and my eyes tried to focus on the room around me. During the previous six hours, while unconscious, my life had been changed forever. Two teams of skilled surgeons had removed a kidney from my cousin Diane and transplanted it into me.

Laying there, I had no idea what was in store for me. The transplant was done to give me a second chance at life. That second chance turned out to be even better than the first.

The year that was 2004

intensive-care

About a year before, on New Year’s Eve, I was in another hospital bed, having just been told that I had lost 2/3rds of my kidney function to a rare auto-immune disease called MPGN-1. I was pumped full of a full gram of steroids chased by my one and only dose of intravenous chemotherapy. It was the start of four months of treatment that would eventually fail to save what was left of my kidneys. Just a week before, I had written the following line:

I’m getting a little nervous about the biopsy on Wednesday, but mostly just nervous that I won’t be discharged in time for my haircut.

Five months later, still in a state of denial, I started peritoneal dialysis, while traveling across the country every other week for work. I could hardly say the word transplant and pretended like none of this was happening. As usual, I over-compensated, unwilling to admit I was sick. I stayed out late, pushing my social life to the edge. I dated several women simultaneously in cities I didn’t live in. Glenn, my boss at the time said, “We either thought you were trying to avoid reality or kill yourself.” Probably a bit of both. Eventually, I hit bottom, admitted to myself and others that there was only one path forward. My family and friends began to get blood tests to see who might be a compatible match.

Diane

When the results came back, there was one name at the top of the list, as the closest match: my cousin Diane. Our families had always been close, even though we had grown up 3,000 km away from each other. During summers visiting Northern California, I loved being at Uncle Cy’s house, playing kick-the-can with my cousins, swimming in the freezing cold river, climbing into the darkness of old abandoned mines, and feeling free.

No matter how close you are to someone, seeing them when you know they have flown across the country for the cross-match, the final test to determine if they will be a compatible donor, is a situation where there is no “playbook”. You want to envelop them in a never-ending hug and try to express a feeling you cannot describe. At the same time you want to beg them not to do this: you are not worthy of this gift, it is wasted on you, and you don’t know how you will live with the burden of being so indebted.

Diane had to travel from California to Texas two more times, thanks to the medical team botching my pre-op once and then topping that with an improperly administered blood test. She was always strong, smiling, stable. I was a wreck.

Each year, as December 21st approaches, I re-call the week of the surgery, and read what I wrote during the week before and after the surgery. Both before and after the surgery were rocky to say the least, but within four months I was hiking in Big Bend with my three closest friends in Austin. My new life had started.

Count It All Joy

Great Ocean Walk Sunset

My friend Donna, who I have never met in person, has a blog with this title. Both the title and her blog help me on the hard days remember that every day for me is “extra innings” – I’m getting to play and live longer than I should have. There are still times when I struggle with what life throws at me. Sometimes it feels like the darkness around us can overwhelm us. I lost a friend and former roommate this year. This week in Sydney, two innocent people lost their lives from a senseless act of violence and ignorance.

In the past ten years, I have seen so much. I see friends and family struggle with physical and mental health every day. I have seen the people I care about weep. I have seen the pain that friends hold inside. I have watched my nephews grow from boys into young men. I have going swimming and running with my niece Bekah in the same week. I have experienced loss and the end of a marriage. I have forgotten and then remembered the things that matter in life. I have suffered injury and experienced healing. I have made new friends and have separated from others. I have swum in three oceans, I have spent hours and hours cycling in 6 different countries. I have made new friends around the world. I have watched the sun rise and set.

The last month has been overwhelming with light: Crossing the finish line of my second Ironman, followed two days later with the birth of my best friend’s first child, named after me. Returning to work to see friends and colleagues who have been there for me over the past four years. Yesterday, the sunshine and the ocean welcomed me. Last night, I could not have been happier.

Every day there is a new chapter of life.

Thank you

Diane, you gave me a decade of life. A decade of millions of moments, that have made me who I am today. Thank you so, so, so much. I think about you every day – as I take my medication, as I feel the transplant scar, as I breathe in everything around me. I love you. I can’t wait to see you in January. It’s been over a year since I’ve seen you. Even after a decade, I still can’t quite believe what you did for me. I hope I am living a life that makes you proud.

BJR and Diane

(Okay, taking a photo of this printed photo didn’t turn out so well – but it’s still a favorite of mine. Our first time together after the surgery)

Ironman Busselton Race Report: “Ouch”

Ironman Busselton Race Report: “Ouch”

2014-IMWA-Header

Over the last two years, my free time has largely been filled with a singular (maniacal?) goal, and that was finishing my second Ironman. I’m happy with my race and I’m leaving Busselton feeling content about what I did on Sunday, but even happier with what it represents about my life.

Given the fact that I was on crutches in March, unable to run without pain until the last two months, and sick about half of the year, I can’t quite believe it. My finishing time of 11:12 is more than 90 minutes faster than the 12:45 I posted four years ago. I knew I was in better shape, and despite the lies I told myself and others, I would have been disappointed if I didn’t go under 12 hours. Still, there was a nagging concern about how my body would hold together after the last year of trauma.

Now, you’re lucky I’m not feeling prolific – after my first Ironman I wrote an entire post for every leg of the race….5 posts in total. But we’ll try to get it done in two posts.

Pre-race: All systems go

Justus and I arrived in Busselton on Thursday afternoon, and I spent Friday and Saturday doing the usual prep of assembling my bike, driving the bike course, getting something fixed at the bike shop, getting in a practice swim and going for a practice ride. The night before the race, I slept incredibly well. It helps going West for a race, because your body wants to sleep earlier and get up earlier, which it what you need when the race starts at 5:45 AM.

I had a few goals: beat my previous time by at least 45 minutes (i.e. go under 12 hours), not need a “pit stop” so many times (first IM was 6 total stops!!), and not walk on the run.

The Swim: Aquatic Combat in Paradise

Swim Start

I managed to get a decent warm-up in the ocean, and peed while warming up. Check and check!

Despite it being a wide open course, it was more of a melee than I had expected. I ran into a handful of pods of chaos, with swimmers who were opting to stay near others rather than just swim without being pummeled. At one point I was kicked in the goggle, and my calves were actually sore coming in from having so many people slap them. I’ll admit while I am pretty good about not slapping people’s feet and just forging my own way, I do retaliate when someone is just being ridiculous. And there was plenty of retaliation Sunday.

Overall I was swimming well “within myself” and could have gone a lot harder, but I had a game plan and I needed to save everything for the run given how little running I had been able to do over the past six months.

My one major mistake was heading toward the Busselton Jetty instead of the swim exit, and including that I probably tacked on an extra 50-150m over the entire course of the swim with poor navigation.

Overall, Busselton has to be one of the best swim courses in the world, if not the best (I have very limited experience but it’s hard to imagine something better, and a lot of my teammates who have done multiple races confirm it). The water is clear, the perfect temperature, and you have a massive landmark in the Jetty that you can follow. Luckily I breathe on the left side so I could always see the Jetty if I was veering off course.

The Bike: One position, five and 2/3rds hours

Bike TurnaroundMy game plan was based on a specific power level, but the one challenge with my Garmin power-sensing pedals I have is calibration. I don’t think the power readout was correct – it definitely felt low given my level of effort. I wasn’t pushing anything that hard, but the wattage was too low given my speed. Luckily I know what my legs should feel like and kept the effort level where it should be. I felt great after lap 1, and knew that I had enough in the tank to exit the bike ride with something for the run.

The wind came up a bit during the second lap, and my pace dropped a little in the face of a slight wind. The course is beautiful, and the surface is great. It’s just dead flat so you’re in the same position for 5-6 hours. And my man-parts were feeling it much worse than my legs. Time to look at some new saddles…

The course officials seemed to do a decent job of catching people drafting, though one friend got two penalties when in both cases he had been illegally passed.

Near the end of the race, seeing ~5:40 as my bike time, quick maths told me I had a shot at an 11 hour Ironman. I pushed that aside and told myself to follow the plan and not get cocky.

The Run: Suffering and wait… even more suffering

Run through the crowd

My first two ks were supposed to be the slowest of the marathon, but I started off too fast: my body was happy to be off the bike, wanted to move, and I was fighting to hold it back to the correct pace.

The first lap of ~12kfelt good (for all my friends back in the U.S., a marathon is 42k), and I took my first pit stop mid-way through. The second lap also felt great – I was holding pace just fine, but needed a second pit stop, but felt that it would be my last.  It was! 1 goal accomplished.

The third lap, the wheels didn’t just come off, they fell off, caught fire, and disintegrated. All of a sudden, I was dizzy – I couldn’t run straight. My legs got wobbly and I couldn’t concentrate. I began to walk. Confusion dominated the next two minutes trying to decide if I had too much salt, not enough salt, not enough calories, or not enough water. My race hung in the balance of the next two minutes. I had seen enough videos and first hand evidence of people collapsing during races that I knew what could happen. My mind drifted into the negative: I hate walking. I had now failed one of my main three goals, but I put that aside. I tried running again but my legs were jelly and could barely catch each stride I was making, and my balance had completely left me.

Finally I threw back a gel, a salt tablet, and three cups of water, and began to feel a little better. My legs were still wobbly, but my mind was clear. During that time, Scott Miller, a fellow kidney transplant recipient, passed me and said hello. Then Natalie, from my tri-club, came by and said “you can do this, Bryan.” And that’s what got me started.

I began to run again, and ran side by side with Natalie while I felt my system recover, then as I got stronger I picked up the pace. I was back on race pace (and actually way too fast during one section as I went through the crowd, knowing I had just one lap to go). Kyle and Justus were there cheering, and Scott and Sarah were yelling a bit further down the course. At that point, I knew I’d finish, and go under 11:30. 

Looking back, there’s no question it was simple dehydration that caused my near collapse. My nutrition was fine, I just wasn’t feeling thirsty even though I desperately needed the water.

The final 4K were tough, but much easier than my fight with dehydration. I asked my legs for more, and they grudgingly gave me a slightly faster pace, but there were no adrenaline reserves to speak of. I crossed the finish line with scores of muscles in pain, but more happy to be finished. The finish line comes so quickly in the last moments.

After the finish line I found my teammates, I found Scott Miller, and I found Kyle, Justus, Scott, and Sarah. Having them there made the celebration so much sweeter.

What it all means

So, I spent almost a full day in the ocean and racing around roads in Western Australia. What’s the point? Just to prove that I’m as daft as everyone thinks? (Please don’t answer that.) I’ve been training for two years for this – why have I spent ever spare minute pursuing this? Well, several reasons:

Four years ago in Austin, my training partner used his Ironman quest as a way to focus his energy and come back to life after a difficult end to his marriage. I suppose I started my journey the same way, two years ago, using the suffering and focus of training to cleanse my heart and mind of the anger and the hurt from my partner’s callous disregard for our relationship.

Along the way, I found Room to Read; I found a cause I cared about – where I could actually see the difference my donations could make. I met girls who could attend school for a year for the price of a nice dinner in Sydney. I met Kall Khan, who taught me about giving more and more every day.

I came back from injury and illness – a stress reaction in the femoral neck of my left leg a year ago. After seven weeks on crutches I still had months of rehab to undo the damage to the surrounding tendons. Winter brought a three-month intestinal infection. September, October, and November were near perfect, though I managed to contract a nasty lung infection two weeks before the race.

About 25% of the people in my age group did not finish the race – the run was hot and difficult. There’s some extra pride there. Four years ago, one of my coaches, Christie, told me that the journey is much more memorable than the race. And despite the difficulty of the last two years, the journey has been incredible, and I wouldn’t trade it for anything.

Finally, and most important: In two weeks, I will celebrate the 10th anniversary of my kidney transplant. I don’t ever cross the finish line alone: my cousin Diane is always with me. I can’t wait to see her in January! She’s both the reason why I’m physically able to run even 5K, and the motivation behind why I love this sport. She was at the finish line at Ironman Arizona four years ago, and the one upside of not having here there is that I didn’t spend 15 minutes after the racing crying and holding on to her.

Coming soon….  The Gratitude Honor Roll.

8 Things I Learned At The Borrowed Organ Olympics

Australian Transplant Games 2014

relay podiumThey come from many nations… Okay, three nations as far as I could tell (Aussies, Kiwis, Poms). They come from many states! (Well, Australia has only five states and a handful of territories). They come in all shapes and sizes (true). And they are all alive because someone gave them a gift that extended their life (that includes me).

I had considered going to the Transplant Games in the U.S., but never really had the time.

So, given that ‘top N’ lists (“17 things you never knew that your carrot peeler does while you sleep!”, “12.5 celebrity secrets to shaving an aardvark”, and so on), here are the top 8 things I learned at the Australian Transplant Games.

1. Know whether it’s a fun run or a competiton

Conor finishThe games kick off with a 5k Run open to everyone, so people from the local community can come out and show their support for organ donation. We do not require actually donations at the event.

The wind was so high that it blew down some of the race flag and event decorations, and was visibly moving runners as gusts hit the course around the lake.

About 500m from the finish, the guy in front of me looks over his shoulder, sees me, and takes off. He crossed about 5 seconds in front of me, and turns out he (Dave) was a kidney transplant recipient as well! In Newcastle most of the fast runners were not recipients. Here, it seemed like a lot of the competitors were recipients. So, so much better! And at that point I learned that a medal was at stake – now, I don’t know if I had anything in the tank to actually catch Dave, but I’m happy with the silver medal.

2. If you invite politicians to anything, they will want to read a prepared statement

After the run, the opening ceremonies began. A parade of all the recipients, who then formed an honor guard to salute the living donors at the games, and the donor families. These are the real VIPs of the games: the people who have made all of our lives possible. I thought about my cousin Diane and what she did for me in 2004 that gave me another decade of life. I still don’t completely understand the gift or how she decided to do it, but I know first hand the effect it’s had on my life.

Then, about 30 minutes of speeches, 90% of which were from politicians reading prepared statements that they didn’t write.

3. There are some serious cyclists who have organ transplants

cycling podium 30-39Monday was cycling, held at a V8 supercar track called Sandown Raceway. The first thing I noticed when I arrived at the cycling venue was “There are legit cyclists here!” It was awesome – meeting other transplant recipients who have carbon framed bikes, with race wheels, and who are clearly kick-ass riders. Pictured here are the 3 guns from the 30-39 age group.

4. I am a triathlete, not an actual cyclist

The cycling time trial course was 5K, basically a lap and 2/3rds of the race course. There was a slight hill and a slight headwind at the same point in the track. I had done some warmup laps and knew I could get above 45 kph on the straightaway, but it was going to be about maintaining speed (or at least not getting destroyed) in the rough spots. I felt great throughout the first lap, and fought through the final 2K, for a time of 9 minutes, 3 seconds, for a speed of 33 kph over the 5 k. Not exactly blinding speed, but the course did go through the windy/uphill section twice.

And I ended up with the Silver medal! At this point I was still unsure if I had medal’d in the 5K run so it was a little exciting to get a medal, though medals really aren’t the point of these games.

In the midst of the fun, the reality of why we’re doing this is all around us. Anthony, from Sydney, is on dialysis and won the 50-59 age group, in a time faster than mine. A couple of the guys have had two transplants, which reminds you that your transplant won’t last forever.

5. Breakaways look cool on TV

 

I’ve never been in a cycling road race in my life. My coach, knowing my general ignorance of cycling except in time trials, had clued me in: “Wait until the last 400 meters and then sprint.” Amongst the 40-49, 50-59, and 60-69 are groups, there were seven strong riders among that group, and that was the line that quickly formed. I was at the back, looking like a meerkat, realizing I had no idea what I was supposed to do. John, the largest rider in the group, was at the front, with everyone drafting behind him. At times he would surge and the rest of us would catch him.

At the end of the second lap, I realized that this could be the only road race that I ever do in my life, and that I should try a breakaway, just to be able to say I have done one. Well, now, I can say I have done one. From last place. On a flat straightaway. And that my breakaway lasted for maybe 15 seconds before the other six attached right back on to me. Yes, my first breakaway was from the worst strategic position possible, on the least desirable part of the course. Sorry, coach?

I then drug the group around the course for another lap and a half, before becoming cycling legend. Normally, the stronger riders at the front will surge, and the weaker riders get “spat out the back.” I then was “spat out the front,” where the entire group surged to the side and around me, and I missed hopping on the back… I rode the next 4+ laps solo, but crossed the line with a smile on my face. I hope someone got some footage of my amazing breakaway… Soon I think riders in Le Tour will be copying my patented move.

After I crossed the finish line, I looked around me and I didn’t want to stop. I rode three more laps before finally coming off the course. When am I going to get to race on a V8 supercar track again?

6. Getting beat by someone can be more exciting than winning

bryan and bryan swimmingI still didn’t quite understand the power of the games until the swimming events. Spending eight hours together at the aquatic center in Albert Park, I had the chance to meet and get to know so many more athletes – and the competition brings you closer together. Here, there are no rivals, just mates having a go at their best efforts.

I wasn’t sure how I’d stack up against the field, since my age group had the most athletes, and I had picked the 200m and 400m free, which I figured would feature the most fit of the lot. In the 200m, I swam a 2:56, which was about 20 seconds better than I had predicted. Bryan Williams, a heart transplant recipient, finished 6 seconds ahead of me. In the 400, I figured I would try something extreme

Bryan lives in Perth and does long distance ocean swims, like the 10k swim from Rotness island! Being an athlete with a kidney transplant is one thing – a heart transplant is another universe. I could have talked to Bryan for the next 10 hours; it’s humbling to meet someone like him, and I’m hoping I’ll get to see him when I head to Western Australia for Ironman Busselton.

All in all, I did six events and came home with five silver medals. But that’s not what I’ll remember about the games.

7. Don’t Stop Looking for Heroes

Gemma medalYou might think you stop having heroes when you stop being a kid. Well, the reverse is true – as an adult, I find the heroic more and more often in children. Jemma is eights year old and a liver transplant recipient. She won gold in both the 25m backstroke and 25m breaststroke. Her dad, Jeff, swam in the 200m free with me, and just seeing their family tells you a story of what a gift Gemma has received, and the gift that she is to her family. Having the entire family get to compete and support the games shows you the real impact of these gifts.

8. Argentina in 2015 sounds like a great idea

The World Transplant Games are in Mar De Plata, Argentina, next August. If possible, I’d love to be there.

As a note to my future self, here are the 12 events I should do there:

  1. Running: 5K
  2. Cycling: 5K time trial, Road race
  3. Swimming: 100m, 200m, 400m free. 50m, 100m backstroke. And both relays.
  4. Table Tennis
  5. Athletics: 1500 m run

The World Games also has a “triathlon”, where they add your times for the 5K run, 5k time trial, and 400m swim and take the lowest overall time to award medals. (Note I would be the gold medalist for the Aussie games in this event if it was a part of the games, but who’s counting…)

The Reality

Despite this amazing event, the bright spark it gives the athletes, underneath it all is the need to raise awareness, of how important organ donation is.

If you haven’t registered to be an organ donor, please do:

Many of the participants have lost their first transplant and are now on their second. At some point in my life, the kidney I have will start to fail, and I’ll have a hard choice ahead of me about what to do then. Until then, I’ll be finding what else I can do with a borrowed kidney.

Happiness is Surgery (well, actually not)

Yesterday I had the stitches removed from my transplant scar, more than nine years after the operation.

To be honest, it was a fiasco and in hindsight a bad decision on my part. I’m fine, it didn’t affect my health, but I really regret not pulling the plug on the entire operation.

A Scar with Painful Bumps

A year or so after my transplant I complained to my nephrologist about the three hard bumps along my scar. I think he said it was likely scar tissue.

A year ago when I started seeing my new nephrologist in Sydney, I told her about how these “bumps” were often digging into my stomach when I was riding or exercising. She said, “That’s likely left over stitching from your surgery. You could get those removed.” And she referred me to a transplant surgeon.

The Culprit: Nylon Knots

I met the surgeon a couple of months ago. I explained that this was a nice to have – not affecting my health, just painful at times, but not worth spending a lot of money or effort.  The surgeon explained that the transplant surgeon in Houston had used nylon thread which doesn’t dissolve. I asked him if he used nylon thread 10 years ago, and he said no. Apparently my surgeon preferred that I have knots of nylon in my stomach for the rest of my life, even though they are only useful in the first few months. What could be done is a small incision, cut the nylon thread, pull out the knots and the thread. The surgeon said it would be easy, take 30 minutes, and could be done “here.” I interpreted that to mean his office, as an outpatient, and not requiring going to the hospital.

The Build Up (or the bait and switch?)

When I called up the next week, his assistant tried to schedule me into the hospital for surgery and I had her schedule it for his office instead.  A day later his assistant called me back and explained that it only happened “in Theater,” which sounds fun but really means in the hospital, but still as an outpatient.

A month or so later I received a letter about admission to North Shore Private Hospital (which is a great hospital in Sydney). It seemed really formal for something so quick and easy. And it listed the anesthesiologist, which immediately put a frown on my face.  Then, I had to fill out an online registration form embedded in the worst “form builder” software imaginable. It took me 30 minutes to register for admission, mostly because this web app was so painful.

Our prices can’t be beat because no one knows them

By now my seventh sense (the one that detects the presence of the Medical-Industrial-Extraterrestrial conspiracy) was lighting up. Earlier his week, I called the Surgeon’s office and asked for cost. The answer: “Not much at all.” When I pressed for details, they said that my insurance would cover it. I explained that this was not what I was asking for. I was trying to understand the total cost. Everyone seemed confused as to why I would care since I didn’t have to pay anything.

There’s actually a big debate going on right now about health care costs in Australia, and whether a patient should have a co-pay (which they don’t under Aussie medicare today). Reading Friedman in junior high taught me one of the most valuable lessons in life: There is no such thing as a free lunch. I tried patiently to explain why I cared, but it confused the staff even more. I was transferred to two different people who could not grasp why I cared “when someone else was footing the bill.” Finally I was told that the hospital admissions team would call me back and give me a total cost. Everyone still seemed to be puzzled with me, wondering why I wasn’t eating this delicious free lunch.

The Day

Friday morning I was not supposed to eat after 8:30. What? For something this simple? Friday afternoon came, and after a quick low-blood-sugar-train ride to the hospital, I went to admissions, got my patient wristband, sat in the “Short Stay” section of surgery (outpatient). Eventually I was called, walked through the details of the operation by an Irish lass who was moving to Darwin the next day, and robed myself in the finest white gown available. (At first I picked up a gown that would barely cover me, with no arm holes or belt. I looked at the nurse and said “Come on!” and she laughed and explained that I had picked up a sheet). At this point I was in a good mood, but couldn’t form complete sentences – or more accurately, I could not finish one before I started the next one.

Antibiotics, Sedation, and Public Transportation

And of course, in my low blood sugar, what friends refer to as “hangry” (hungry + angry) state, I had a few things to discuss with the hospital staff.

  1. I explained to the orderly that I should be on antibiotics since I’m a transplant patient. They told me to talk to the doctor.
  2. I explained to the orderly that I didn’t want to be sedated or have anything other than local anesthesia. The told me to talk to the anesthesiologist. I said I didn’t think we needed him.
  3. They explained to me that I needed a ride home and I told them I planned on walking. They were not happy about this (I live about 15k from the hospital). They said I really needed to talk to the doctor about this.
  4. The orderly says I will definitely be taken out of the hospital in a wheelchair. I politely informed her that I would not.
  5. I explained 1,2, & 3 to the anesthesia nurse, and she said to talk to the anesthesiologist.
  6. Some random nurse came in and said that he didn’t know about 1, but 2 was possible, and I should talk to the anesthesiologist, and that 3 was not happening and I’d have to take a taxi at best.
  7. I said I’d ride the bus.  This did not make anyone happy and they explained that if I began to have problems in a taxi, it could just turn around.  But a bus can’t turn around. I couldn’t help but smile.
  8. The anesthesiologist came in and I explained 1, 2, 3, and 6. He said I would have antibiotics in my IV (What? I need an IV?), that local anesthetic only was fine and that’s the way he would do it, and that there’s no way I was walking but a bus would probably be fine. He also mentioned that this meant he was practically useless in the surgery, but he’d still be there. Brilliant.
  9. The surgeon came in and had clearly been told that his patient was a pain in the ass. He explained that I shouldn’t walk home, but that he would accept the bus. I consented (the bus having been my goal all along).

By this point I had been touched by at least 10 people. For something “quick and simple”, I had been in the hospital for almost 2 hours, and wasn’t even “in theater” yet.

The theater

Operating_theatre

I am finally rolled into theater, where the cast and crew (at least six people and probably more like 10) all get a good look at the family jewels. The surgeon enters, I get a couple of painful shots in my abdomen of something-caine, and the cutting and smell of burnt stomach flesh enters my nostrils. There was very little pain and people were complimenting me on how I was doing this without sedation. The only real pain came when he was pulling the nylon thread through where it was sown into the abdominal muscles. That did not feel good. He had to cut deeper twice because the knots were farther down than expected. But he pulled each one out and showed it to me, along with little chunks of me attached to it. Kinda cool, I have to admit.

Recovery

It’s over, I’m wheeled to recovery. I am ready to go home, I am not sedated, and the wound looks fine, is not seeping. But they have to make sure I can eat and pee. So, like a zoo chimp, I eat and pee (not in front of anyone, so I could have faked it) for the amusement of the staff.

I want out.  I try using the remote control to make the bed go entirely vertical, but I suppose some smart engineer has prevented the remote control from being used as a patient catapult.

I cannot wait to be discharged and neither can the staff.  After leaving work at 1:45, I arrived home at 7:30 PM. A six-hour ordeal for 15 minutes of cutting and stitching. And my reward? No showering today and 10 days without training.

Lesson Learned

Overall, it was huge waste of time and money. But, I should know better. Surgeons like to cut. Their solution to almost any problem has a sharp edge to it. When a surgeon says, “it will be easy,” they are only thinking about the surgery and their part in it, they are not thinking of the overhead, the cost, the recovery, or the actual impact on the patient. Of course I’m generalizing, but I’ve had enough surgery in my life that I think I get to make a couple of generalizations.

At the same time I am alive and well because of the skilled hands of people just like this surgeon (who is a transplant surgeon), and I’m alive and well because they can focus on the task at hand for hours at a time. So, I’m quite happy that surgeons exist.

Surgery, Part 2

Now I’m waiting on word on whether or not I’m going to need surgery on the torn labrum in my hip. The latest MRI indicates that it’s very likely. I’m waiting to hear what the doctor says. Hopefully I can be better behaved at this one. But I’m still going to ask what it’s going to cost. And I’m going to take some small sadistic pleasure watching the confusion ensue.

Confession: I was a doper

I’m half way through The Secret Race by Tyler Hamilton, and with the evidence being published by USADA around their case against Lance Armstrong, I have realized that it’s time I came clean:

I have used EPO, the same drug the top cyclists used to surpass what the normal human body can achieve.

My history with EPO

I was tired.  I needed more energy.  Fatigue greeted me every morning and every evening.

While it was not my idea, when my doctor first suggested it, I did not protest or fight it, but I let him inject me on several occasions.  At one point, my doctor encouraged me to learn to inject myself.  He gave me a needle and a nerf football to practice subcutaneous injection.  After watching me bury a needle all the way in to the football (far too deep), he decided that trained hands should inject me.

Like the pro cyclists who have testified to the use of EPO at all levels of cycling, we had to monitor the levels in my blood to make sure my levels weren’t too high.   That meant more needles, extracting blood to make sure my hemoglobin levels weren’t too high.  Once I had two injections within too short of a time period, and my hemoglobin levels were far above normal, raising a good deal of alarm with my doctors.  I remember the small vials, I remember the complicated payments for the drug.

I did not tell my friends about this.  I did not tell my family about it.  It was not something I wanted to share.   I did not want to admit who I was cheating.

Why?

Why would I do this?  What could possibly drive me to let a doctor put EPO into my blood stream?

It’s simple: Both of my kidneys had failed.  Your kidneys are responsible for producing the hormones (the natural equivalent of EPO) that tell the body to generate red blood cells.  As my kidneys failed and performed only at 5% of their original capacity, I wasn’t producing enough red blood cells, and so I needed EPO.

I’m not alone.  Almost every kidney patient out there has seen the small bottles that were our lifeline, that kept us healthy, along with all the other drugs we used to keep ourselves alive.  Our health depended on it.  My cousin Diane, who gave me a kidney, put an end to my need for EPO to survive.   I’m sorry to out all my fellow end-stage kidney disease patients and our past use of banned, illicit substances.   Who were we cheating?  We were cheating death.

Update on Elida (and the TFC Campaign)

As we’re now in Australia, I’m wrapping up several projects. A key one from 2010 was my Ironman fundraising campaign Transplants for Children. I had hoped to raise $10,000 (the most I had ever raised for a charitable cause before was $8,000), and so I set my public goal at $20,000.

I’m proud to say that we raised over $11,000 for Transplants for Children, and I can vouch that every dollar donated will have an impact on the kids and families in the program.

To all the people who supported my campaign, thank you. Each donation meant something personal to me, and your generosity and support means a great deal.

Elida!

Many of you have asked me how Elida is doing – which means a lot to me. When I first began searching for someone to represent the community that I wanted to help (young kids in need of a transplant who represented the diversity of Central Texas), I never imagined that I’d find such an amazing example of why this cause is so important.

Elida is doing well. After spending time with her, I’m not surprised that she continues doing well in school, despite going to dialysis three mornings (school days) each week. Initially the hope this summer was that Elida’s mother, a perfect match, would be able to donate – but that was not possible this summer for a variety of reasons that I won’t detail for the sake of the family’s privacy. It goes to highlight how challenging finding a match can be, and even then how many things can easily disqualify a healthy potential donor from being able to donate.    I remember how many steps there were in the process, and how many times my approval for transplant got delayed over an arbitrary piece of bureaucracy.

All the more reason to make sure you’re a registered organ donor, and that if someone you know and love needs a transplant, to consider being a donor. The good news is that Elida is back on the transplant list, and her journey only underscores the need for the help that Transplants for Children provides.

Here are two pictures of Elida from a recent Transplants for Children STARS event.  She still amazes me at how incredibly positive she is, and how well she deals with the daily challenge that she faces.

Elida 1 Elida 2

Lessons Learned

The main lesson of my fundraising campaign was the main lesson of all of 2010 – I tend to take on too many things at once and don’t get to put all my focus into my priorities.  Training for my first Ironman, hunting for a job in three different continents, still working 75% of the time, getting more involved in two charities, trying to run a fundraising campaign, and stay happily married was too much all at once.  In hindsight, I hit every single one of my goals in each part of my life, which I guess should make me happy and content, but in each area there’s a realization of how much more I could have done in each area with focus.  And the TFC campaign is no exception – there were over 100 activities I wish I could have added to the campaign, and even more personal time working with the kids would have been tremendous.  In the end I am happy with the funds I raised, but I feel that I still have something to prove to myself in the future.  And I think that’s a good thing.

Transplants for Children Gala and Fundraising Update

TFC Gala

Last night Lisa and I braved the evening traffic of I-35 and the horrors of dead stop traffic on 1604 to attend the Tranplants for Children Gayla’s Gala in San Antonio.

Despite our lack of “Western” attire, we didn’t stick out too much among the rhinestone studded, cowboy boot wearing (to Lisa’s credit, she does own boots and wore them), ten gallon hat crowd.  I don’t think leopard print is ever considered Western, but apparently a few people disagree.  It was fantastic to see Roddy, Staci, Bonnie, Diana, and especially Ricky: Ricky has had two heart transplants, and you couldn’t meet a happier kid.  His parents are just as fantastic, and can always be found at the TFC events.

It meant a great deal to me to watch the auction, where hunting, fishing, sports, and beach trips donated by individuals were auctioned off for top dollar, with the proceeds going to TFC. The impact those funds will have is tremendous.  The kids this will benefit will be changed forever.  And their families will be able to rest easier knowing their child has a chance.

Fundraising for TFC!

I’m happy to be adding a small amount on to those donations, as my Ironman fundraising has just crossed the $9,000 mark and is sitting at a little bit above $9300.  I think some of my friends were making sure I was really going to follow through on this crazy idea.  No backing out now.  Thanks again to everyone who has donated – I look at the list of everyone who has donated at least two to three times a week, and I think about each one of you.  But not in a creepy way, in a good way.

Once again, if you think you donated and haven’t receive a personal thank you email from me, please let me know!  Paypal seems to have screwed up the transactions a couple of times, and 1) didn’t collect the funds 2) didn’t notify anyone of the failure.  Nice work, pal.

Kyle racing in Ironman Arizona

One last transplant note: Kyle Garlett, the cancer survivor and heart transplant recipient, is going to be racing in Arizona with me!  Unbelievable.  Kyle is doing the bike segment (112 miles) in the Beach to Battleship triathlon this weekend on a relay team of heart transplant recipients called the Tin Men.  Then he’s coming out to Arizona for Ironman Arizona.  I can’t wait to meet him.

Happy Birthday Love

And, closest to my heart: Happy Birthday to the love of my life.  You mean more than the world to me.  I hope the English Muffin I made for you this morning reflects all of that.

LSCOL / Why I am an Idiot

Note to the reader:  There are two topics in this blog:  1) LSCOL 2) Why I am an idiot.  They are not related.  Half of you will skip the first topic, even though you shouldn’t, just because you want to hear why I’m an idiot.  The other half will not bother reading the second topic, because you’ve assumed I was an idiot all along. You may now continue on to enjoy this blog post.

LSCOL

Last week I was re-united with the Lone Star Circle of Life Bike Tour.  For the last two years, I rode the entire week with the team, covering 500+ miles of Texas roads.  Each day we would stop in a Texas city and meet organ recipients, organ donor families, marrow recipients, marrow donors, people who have donated gallons of blood over a lifetime, and people who work every day to help the people who need marrow, blood or organs.   Basically you exhaust yourself completely and then tell the most emotional story possible, so it guarantees that you become a sobbing pool of thanks.  You end up feeling a lot of things that you normally wouldn’t admit to yourself.  And you make a huge difference in the lives of the people you meet, who are willing to overlook the fact that you’re hugging their kids while wearing sweat-drenched bike shorts.

This year, because of my Ironman training, I couldn’t participate in the tour, but I did have the chance to be a “day rider” and ride with the team around New Braunfels and on up to San Marcos.  The ride took us through some great Texas hill country, with a brief segment on the Devil’s Backbone.

I have always preferred to ride alone – being in the pool or being on the bike are moments for me to purge all the angst and frustration that build up on a daily basis.  I can work my problems out in my head as the miles go by.  This year, training with T3 I’ve found great teammates that have pushed me harder than I would by myself.  And I’ve enjoyed training with them a ton.  But I have to admit that the day with this team, because of the experience over the last two years, is a completely different experience.  Just getting to be on the same road with the team is a privilege.  Just to give you a few examples – there’s Kevin, a marrow donor whose gift saved someone’s life; Keith, who works with families who have just lost a loved one and are making the decision to donate and save other lives; Joe and Becky, whose son received a heart transplant.  And the ride is a great experience – we laugh a lot.  Kevin’s nickname, because of European jersey sizing, was “5X” one year.  Keith and I still reminisce about our synchronized wipeouts over wet railroad tracks last year.  Joe and Becky are the first to smile and get a laugh out of anyone.

Thanks for letting Dennis and me ride with you for the day!  And thanks to Debbie Mabry for being the driving force behind the ride for all 13 years.  We love you, Debbie.

Why I am an Idiot

Since my transplant, I have taken immunosuppressive medications at least two times every day, which act as anti-rejection meds to prevent my body from rejecting my transplanted kidney.  With a lowered immune system, one side effect is that I do get sick a little easier than the average bear.  And the average human.  But my immune system has not reduced my stubborn denial that I do not get sick.  About six weeks ago, ragweed season hit Austin, and I became a mucus factory – my immune system makes my allergies worse, so I invested in 1000 shares of Kleenex stock and began the fun cycle of trying to keep my system from being overloaded by “drainage” and all the fun stuff that we allergy sufferers experience.

Two years ago, when I had a string of sinus infections, I finally told myself that when certain symptoms did not go away after four days, I would see a doctor.  Well, the weeks of September went by, and my allergies got worse, and presented all the same symptoms, and I told myself that I was fine and it was just allergies.  One morning I was walking to my car and gagged, and threw up all my breakfast, just because my throat was clogged with junk.  But, “it’s just allergies.”  Finally I decided to see my allergist to fight back.  After 10 minutes of discussing the likely allergic reaction I was having to certain pollens and my vocal chords, my allergist said “but let’s do a quick exam just to confirm what we think.”  15 seconds later he said “You have a serious sinus infection.”

So, for the last five weeks, through the most intensive period of my Ironman training, I have been pushing my body harder and harder, all while dealing with a sinus infection.  There were times in swimming when I could not get a breath – normal sets became “breath control” (where we breathe less often).  Some sets became “Bryan stops because he can’t get air.” During training we constantly talk about “listening to our bodies.”  I guess I was listening but decided that my body didn’t know what it was talking about.  And that, is why I am an idiot.

Bonus Topic: Ironman Update

Less than two weeks from now I’ll pile into my Pathfinder and drive to Tempe, Arizona, for Ironman Arizona.  The race is November 21st.  Taper has just begin, and I am excited. Strangely, I am not nervous, but maybe that will come at some point. I feel like I’ve done everything I wanted to get ready. Physically I believe I’m in shape to do it. And I know it’s going to be harder than anything I’ve ever done. I know the last 13 miles of the run are going to be more painful and brutal than any miles I’ve ever run. There are things I cannot control: weather, mechanical failure, and squirrel attacks.  So I do not worry about what I can’t control.

On a related note, Kyle Garlett, a cancer survivor and heart transplant recipient, who was making his second attempt at Kona (Ironman World Championships), was pulled form the course early during the bike segment, because of low blood pressure.  Kyle’s courage to even attempt the brutal Kona course amazes me, and he shares a great deal of the ups and downs in his blog.  It’s people like Kyle who are in my mind as I train, and who have inspired me to take this on.  Kyle, thanks again for the incredible spirit you bring – I don’t have 10% of the courage that you do.

Revelations and Aftershock

Monday’s Austin Triathlon impacted me in a lot of ways, but the aftershocks that I felt for the rest of the week were the strongest of all.  Everything that I thought about and wrote about on Monday concentrated around competing as a triathlete. Out of 160 people in my 35-39 age group, I was 6th in the swim, and 29th overall.  I dropped 14+ minutes off my time from last year, even with a crash during the bike course. In an Olympic distance, I had never broken into the top half, much less being in the top 20%. Unlike my insanely competitive wife (whose competitive spirit I love dearly until it makes our Wii contests turn into wrestling matches), I’ve never really cared who I beat or if I won, but just how I did relative to my goals. And Monday I was proud of the results of my training.

And then Tuesday, I was driving home, and it hit me. All during Monday, the thought of “I did really well for a transplant recipient” never entered my mind. For the first time, I had thought of myself as

a competitive triathlete

not as

a transplant recipient who does triathlons

It may seem like a small difference, but it overwhelmed me with emotion, a strange rush of happiness and overflowing gratitude to all the people who have made this miracle possible, and even brought tears to my eyes.

Six years ago, I wondered if I could ever be an athlete again. And now I’m wondering how much faster I can run.  This thought and feeling hit me over and over again this week. Driving home from swim practice this morning, after knocking down a lot of yardage in the pool, those same thoughts hit me. This started as a way to just prove that I’m healthy, and now most people who meet me through the sport think of me as a competitive athlete, not a transplant recipient who is trying to finish.

I’m still a transplant recipient who does triathlons, and incredibly proud of that identity.  But the fact that I could just be a triathlete for a day highlights the miracle of the gift I received.

A lot of people tell me how amazed they are with what I’ve done.  I really haven’t done anything.  Everything that made this possible happened over five years ago in a hospital surgery wing, where my cousin gave me a second chance at life. I had no idea I’d get so much more than just a second chance.

Super Cool Kidney Transplant News

I couldn’t help but share the following links I’ve seen over the last couple of months:

Save Money, Save the Planet

One of my favorite people in the world just launch Blissmo, a Groupon-like service where the products are sustainable.  While I do scan a daily email I get for good deals on stuff I like, it seems like most of the food offerings move me closer to a coronary than better health.  If you’re at all into organic food, sustainable products, green companies, then check them out.

http://www.blissmo.com/join/

Yes, this is still Bryan writing this blog.  While many people would guess that I’d be more likely to be a member of the NRA than the Sierra Club (which, if forced to choose… well…), I am a big fan of recycling.  And in general we shouldn’t be stupid with natural resources.  So check out Blissmo!