SALSA – Please introduce yourself to our readers.
MARK – I’m currently retired from the paper-making industry. Lynn and I have been married 46 years and raised three boys and have three grandkids. We currently travel a lot, especially in the winter and primarily to the Southwest.
SALSA – Mark, can you share some of your previous cycling and outdoor endeavors?
MARK – Around the age of 45 I was traveling a lot for work and decided I needed to do something besides hanging out in the gin joints while on the road so I started xc-skiing in the winter and in-line skating, then mountain biking, in the summer, taking my gear with me when I traveled. I later added canoeing and kayaking to my activities.
By the time I was in my late 50s I had in-line skated the first four or five Duluth Northshore Inline Marathons, xc-skied the Noquemanon and the American Birkebeiner (Birkie) a number of times. Last winter, at the age of 64, I raced in my 20th or so xc-ski ultra-marathon, finishing the Tuscobia 160 in a little over 48 hrs. Then four weeks later I raced the Arrowhead 135 pushing a kick-sled.
I’ve also long-distance biked, finishing in over a couple dozen 100-mile plus winter fat bike and mountain bike races over the past ten years in places like Alaska, Oregon, North Dakota, Idaho, Wisconsin, and Minnesota. I estimate I’ve mountain biked in 40 different states (including Alaska and Hawaii) and well over 200 different singletrack trails. Yes, I was a late bloomer.
SALSA – How did you come to meet Hugh Smith?
MARK – In retirement, I was introduced by a mountain bike buddy to a local cranberry farmer that converted five or six acres of berries into hops. He eventually needed someone to go out and try to drum up some buyers, so we worked out a deal that I’d take hops with me when we traveled and when Lynn and I stopped in at microbreweries, I’d talk hops with them.
A little over a year ago, while on our way to Texas, we passed through a small town called Natchitoches (pronounced Knackatish), Louisiana. After our “sales meeting” about hops, I struck up (or he struck it up, I can’t remember) a conversation with the guy a couple of bar stools away from me. It’s funny how small things can sometimes really change your life.
We kind of hit it off. Hugh is a very positive, happy guy and we just chatted about the affairs of the world. Lynn came in and I introduced her to Hugh. A short time later Hugh finished his beverage and announced he had to go. I said “Hey! I’ll buy you one more” (you’ve probably heard about drinking Wisconsinably?) but he politely declined. I said something like “You sure?” He said he was, and then he shared that he had to go home to get hooked up for his nightly dialysis session. Whoa!!! The next thing I knew, he was telling me about his need for a kidney as he was at stage five renal failure and on dialysis for ten hours every night.
Then the tables turned by me just saying without thinking “If you need a kidney, I’ll give you one of mine” and Hugh returned with the reply of “You sure?” I was, but I really had no idea what I had just gotten myself into. That chance meeting in the micro brewery has led to The Organ Trail project.
SALSA – It seems fair to say that meeting Hugh has had a significant impact in your life?
MARK – Yes! Although it came out of nowhere. Things were rather intense for a year. I had to figure out how best to donate (more on that later) and then there is the anxiety of passing the evaluation. I thought I was healthy, even for an old coot. I felt good that I might have a body part still viable and that I could give it to someone to dramatically improve their life. There was a definite sigh of relief when I found out donors can go back to their former life, even as an active person.
Then I was glad I passed the evaluation. It’s probably the most comprehensive physical anyone will ever get. They thought they detected a possible issue with my heart and I had to complete some secondary testing, so that was stressful on a number of different levels. Heck, one out of 750 people are born with only one kidney and never know it so I wasn’t even sure I had a kidney to spare until after my evaluation. Hugh and I talked about every second or third day for about a year.
Then, once I learned about the voucher option and I was able to do everything in Madison versus going to the transplant facility Hugh was registered at, it was another load off our minds.
Until that time, I was looking at going to Shreveport, LA four or five times to complete the donation process. It was during these days that my idea to ride the Mississippi River on one of those trips started to foment in my mind.
There is much more to this story and the ups and downs until Hugh got his kidney.
SALSA – How difficult was it for you to come to the decision to donate a kidney? Can you walk us through your personal thought process?
MARK – There was no decision to make. I knew that people could live with one kidney as my sister-in-law had given one about 13 years before. That must have been in the back of my mind when I immediately told Hugh he could have one of kidneys. I didn’t even look at Lynn before or as I replied to Hugh. It just came out.
What I didn’t know for sure was how good one could live after donation. All the literature kept saying was that one could live a normal life. As active as I was and with the stress I had been putting my body through in my activities, I started to have concerns in the days after committing to Hugh about whether I could live the same life I had been living. That said, I remember thinking to myself that if it came down to giving a kidney to Hugh or continuing on with my former life, I had decided to donate. I rationalized that I had lived a great life and if there was something in my body that could help someone that much, I’d follow through and accept the consequences of a less-active life. I’ve never felt cheated on what I’ve had the opportunity to participate in throughout my life.
Luckily, what I feared wasn’t the case, and that’s in part why I’m doing this ride on one kidney. One can go back to a “normal” life, even if that life isn’t all that normal.
SALSA – How about the difficulty of the kidney donation itself? It is obviously a major surgery, but is it in any way less difficult than we might expect?
MARK – I think it is less difficult than what many would think. It’s laparoscopic to start with and instead of cutting the stomach muscle, they separate it to get the kidney out, so healing is faster in that regard. They don’t use certain pain killers because they’ve learned that alternative drugs allow a faster recovery. They’ve learned that how they physically move intestines around and other organs for example, has a big effect on recovery.
Also, in most cases, especially in a case like mine, donating to a stranger in effect, they are very selective about their donors. I mean, most people that have “normal” surgeries are sick, but most kidney donors are in rather perfect health, so recovery tends to be faster even if it is major surgery.
Right from the start, days after Hugh and I met and I started looking into the process of what it would take, Hugh and I would talk almost every day. Hugh was always so thankful and wanted me to know what this meant to him. I understood he needed to do that and I needed to graciously accept and listen to what he needed to tell me, but in one phone conversation I jokingly told him he didn’t need to do that every time we talked! So beyond the actual surgery, I had to learn a few things myself. I was very cavalier about the act because in my mind, it wasn’t a big deal, but it is, especially in the eyes of the recipient and even in the eyes of their family. When I spoke with Hugh’s mom early on, it struck me as a parent how I’d feel if one of our sons was in Hugh’s shoes.
That came up with our boys early in the conversion when Lynn and I broke the news to them. One of them asked what would happen if one of them needed a kidney but I couldn’t donate because I had given mine to Hugh. My answer was that I hoped one of them would step forward to help their brother. Lynn took it to the next level when she decided to donate a kidney as well and named our three boys and three grandkids as delayed voucher recipients if any of them should ever need a kidney.
One of the benefits we learned using the voucher method through the National Kidney Registry is that a parent, or grandparent can donate now, while they are in good health, and name up to five potential recipients for future use. It’s a great gift to give a family.
The day before my surgery I was talking to a complete stranger on the phone about promoting The Organ Trail as she was a two-time kidney recipient and she admonished my cavalier attitude. She told me that I needed to understand the gift I was giving, as I was taking the attitude that it’s not really a big deal. After my surgery, I realized that I could have donated easily even if I had been working and not retired—it was so physically unobtrusive.
My position now that surgery and recovery is behind me is that I don’t know of any other thing we can do for another human that has more bang for the buck. All the time, talent, and treasure we donate to almost any cause doesn’t have the depth of effect donating a kidney does for someone else. It can and does save and change lives in so many positive ways that most of us can’t comprehend.
SALSA – What is your goal for The Organ Trail?
MARK - Our goal is two-fold. First, Lynn and I decided to do the kidney donor awareness bicycle ride from Wisconsin to Louisiana to share what we have learned from our kidney donation experiences, dispelling myths and outdated information, answering questions, or leading people to reputable sources for answers about kidney donations.
Learning that 13 people die every day in this country waiting for a kidney made us realize there was a critical need and we felt that we could do something about it. If 10 in every 10,000 people would become living donors, we could turn 13 into 0. That seems doable to me.
So much has changed and is changing to remove barriers, from the medical end to reimbursement for lost wages to prioritization on the waitlist if a donor themselves ever needs a kidney, and many more donor protections.
The voucher option opens many doors and is relatively new and as a matter of fact, Hugh was the very first recipient to receive a kidney via a voucher at the Jackson, MS facility. This option allowed me to donate on my schedule at a facility near my home. There are many more benefits and advantages to the voucher option.
Second, I want to make the ride post-donation, on one kidney, to show others that we really aren’t giving up anything activity-wise by donating.
SALSA – Please tell us about your upcoming ride?
MARK – The ride to Louisiana started out as just something I’d do, like when I rode the GAP (Great Allegheny Passage) trail a couple of summers ago. But The Organ Trail turned into a ride with much more purpose.
To be as effective as possible in sharing what Lynn and I have learned, I’ll be contacting kidney and organ transplant and procurement groups that are national, state and locally run. They are spreading the details about the ride to their members to come and support The Organ Trail by meeting with me and inviting them to ride with me for sections of the route, especially the roll-outs in the mornings in the towns and cities where I'm spending the night.
I’m also contacting microbreweries a few weeks before the ride in many of the cities we’ll be stopping in for the night. My thoughts in reaching out to microbreweries have a number of angles.
The first is that Hugh and I met in one. Other reasons are more practical. I am talking with them to use their social media as well and put up a few flyers to get the word out about the ride. They may have contact with local media as well and they can invite them to cover our mini-event.
We’re hoping this plan will attract many that were as uninformed as Lynn and I were about the dire need for kidney transplants so we can inform them of the need.
SALSA – You’re no stranger to ultra-endurance type events. It might not be a popular opinion, but I’ve always felt that taking on such challenges requires a degree of selfishness; taking the time to train, acquiring the necessary gear, potential travel and time away, etc. I’m curious what your thoughts are on that?
MARK – Interesting question. Yes, one has to be rather committed to do these events, like a lot of things in life. As humans, we all seem to find different things to challenge us or things that somehow get under our skin. Some of us can live with the itch, some have to scratch it, some have no idea what I’m talking about and that’s all OK, as long as we let each other be who we are.
Right before I met Hugh, I had just finished the Arrowhead 135 with the kick-sled, which qualified me to receive the a’trois award, finishing in all three disciplines. I had been talking about slowing down some, looking at what else might be out there for an old, fat guy. With this goal attained, I was starting to seriously think about just what I’d like to do instead.
Somehow, by being open to help another human, my question was answered through absolutely no conscious thought of my own—it just showed itself. A door opened and I went through it.
Having done ultra-endurance events probably didn’t have any influence on giving a kidney, but it sure did on deciding to ride 1,500 miles. My experiences in the mountain bike community, many races and rides I’ve participated in, and especially ultra-events, whether racing or volunteering, have prepared me to take on a ride of this magnitude.
Participating in and observing how others have put on events, and working closely with our son and daughter-in-law as Race Directors of the Tuscobia 160, have helped me immensely in committing to the many logistic facets of trying to make The Organ Trail a success. Ultimately these experiences will help to save lives in our community by simply leveraging my desire to ride my bike.
SALSA – You upcoming kidney donation awareness ride(s) are a bit of an ultra-endurance endeavor in their own right. What are your biggest worries going into those rides?
MARK – That I’m not being too selfish. How’s that for coming full circle?
When I first proposed doing these rides with Lynn and a bit later with our son, Chris, we had many discussions on how to make certain that we had to do everything we could to NOT make this about us, but about the Mission to share what we learned. To create awareness without becoming too pushy and making people feel too uneasy. By not making the rides about the riders.
We know that not all people can become living donors. Heck, we’re both 64—someone could ask us why we didn’t donate sooner. Everyone has their own timing. But we do know that everyone can become deceased donors and that everyone can become advocates, to learn as much as their curiosity prods them to learn. That’s huge in itself. Then they can pass on good information just like we are.
SALSA – How about the biggest hopes for those rides?
MARK - It’s easy to say that we want to have an impact on those 13 people dying every day but I try to break it down to small bites, like single pedal strokes on a long ride. My biggest hope is to prepare the rides to get the biggest impact possible, then just enjoy the journey.
I feel the biking community has a lot to offer when it comes to this project. One of the important aspects I feel is that I’m inviting anyone who wants to, to come join me on their bike or wave us on along the route.
When we rode from our house in Plover, WI to Madison, 10 days before my surgery, 150 miles over two days following the Wisconsin River, my 7-year-old granddaughter, 11-year-old grandson and the 10-year-old daughter of a friend rolled out with us. They rode the distances they could and I thought that was great. Our two grandchildren that live in Wisconsin will be in Madison on April 24th to ride again.
When I was trying to figure out if I had to give up my “extreme” biking after donating, I found a woman named Tracey Hulick online who just happened to be from the Madison area.
As a 7th grader, she heard a classmate tell the story of her uncle who donated a kidney, and that made such an impression on her that she decided to do the same someday. She did many years later, and as a marathon and ultra-runner she came up with the same questions I had. She created a website and Facebook page for athletes who had donated and gone back to their previous level of activity. When I found Tracey, it calmed that fear of having to change my life too much and helped me to decide to do the rides for the same reasons she started her organization.
If I can create a desire in enough riders I’ve never met to join me in however many miles they want to ride to generate a critical mass ride of sorts for three weeks and 1,500 miles on this ride, and the others, media will cover it and when they ask what we’re doing, I’ll feel we’ve done what we’ve set out to do.
SALSA – It really isn’t all that long ago that you met Hugh. Would you ever have imagined that chance encounter might affect your life to the degree it has?
MARK – No, but then it does happen to us all quite a bit, it seems. Hugh and I had a very intense relationship for a year and we’ll always be close. It impressed on me that, as humans, we have the capacity to put all differences aside and concentrate on what’s truly important.
SALSA – If there is one thing you’d like folks to take away from reading this, what would it be?
MARK – First, to be curious about kidney donations; to learn a few things that you didn’t know before and to pass it on when the opportunity presents itself
Second, to consider joining me somewhere along one of my routes and just talk—about anything or nothing at all.
SALSA – Can you point people to some resources for learning more about kidney donation, as well as how they can follow along with you and The Organ Trail journey?
MARK – National Kidney Registry has a lot of precise information about every aspect of kidney transplants, from those looking for a kidney to those considering donating one. The NKR is an amazing story of how one father looking for a kidney to save his 10-year old daughter created an organization now saving thousands. www.NKR.org
The National Kidney Donation Organization is a very personable organization that was started by a living kidney donor and whose goal is to help prospective donors with problem solvers and the latest information and words from donor advocates. www.nkdo.org
Everyone also can become deceased donors either by designating that on their driver's license or in their will.
We also hope that many people will see that there is a financial need and donate to causes that support organ procurement, transplantation and overall support of the process.
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I love being outside. I prefer to ride on dirt. Or snow. If I was born a hundred years earlier I might have been a polar explorer. There's a great natural world out there to see, smell, taste, listen to, and experience. Life slows down out there and the distractions we've created will disappear if you let them. Give me a backpack and let me go.