One Year Later -- A Kidney Transplant Anniversary

May 10, 2011

One year ago at this moment I was waking up in the recovery room after receiving a kidney transplant.   I still can't believe it actually happened.  After all the dialysis and struggle, I received a kidney from an anonymous living donor.  Yes, this is as humbling and amazing as it sounds.  You can read my previous blogs and Don Colburn's Oregonian articles for the full story behind my unique experience.

It's been the fastest moving and most joyful year of my life. I've seen my wife smile for the first time since my kidneys failed. I've met my donor and her family. We've developed a beautiful and unexpected friendship with them. I've had the privilege to leave behind the food and fluid restrictions that come with chronic kidney disease and indulge myself. Oh, the simple pleasures like chicken soup, strawberries, and beer. So much delicious beer. Thank you Portland!

I've had terrific success with my poetry. I won a few contests and was lucky enough to have a poem published in a journal right next to the work of former U.S. Poet Laureate Ted Kooser.  I've also had great professional success. I've taken a new job as the brand manager with a healthcare technology start up founded by Intel and GE called Care Innovations. This allows me to continue my mission to advocate for healthcare reform and new models of care for all of us. Even with all those changes, I've managed to take a vacation for the first time in years. The pictures in this blog are from Maui where Tracey and I ziplined atop the trees and over the canyons. This serves as a pretty good metaphor for my life this year.

Still, I continue to think of those who wait endlessly for transplants and struggle to live a day longer. I brood over the idea that Medicare, which served me well and is so important to our seniors, is under political attack. I lament the widening gap between rich and poor. I ask myself why I can't do more to help. Most regrettably, I find myself returning to old, bad habits, obsessing with work and not communicating often enough with the friends and family I love so much.

Mostly I just feel lucky as hell that I get a chance to keep learning and trying to be a better person. Thank you, Brenda Hanson for this opportunity. I promise to keep zipping above the trees and canyons for as long as I can.

Story in the Oregonian and Eat at Chevy's for a Great Cause

June 16, 2010

Don Colburn who was a finalist for the Pulitzer Prize and a former reporter for the Oregonian, did a great story on my wonderful anonymous donor.  It ran in Wednesday's Oregonian and you can see it online at:  "Woman gives a kidney, not knowing who will receive it."   Check it out. You can see just what a lucky SOB I really am.  Will I ever learn the identity of my anonymous donor?  Will we meet?  Stay tuned!

What are you doing on the first day of Summer?  I'm going to be eating at Chevy's.  Why?

Celebrate the first day of summer with great food and a great cause! Dine at Chevys Fresh Mex® restaurant in Hillsboro on the first day of summer, Monday, June 21st. Here’s how it works: Bring the attached fundraising flyer and Chevys Fresh Mex ® will donate 25% of your meal proceeds to Donate Life Northwest’s programs that register organ, eye and tissue donors and save lives.

All you need to do is print out this flyer, show up and enjoy.  Donate Life is a great organization and one that I'm donating my time and money to.  I feel so much better after my kidney transplant.  I am happy to do whatever I can to give back!

Why Natalie Cole Sucks!

April 3, 2009


Natalie Cole was on Larry King Live this week discussing her kidney failure and pitching the general public for an organ donation. I was very eager to hear what she had to say. As you know, celebrities can help raise public awareness and build understanding for important social issues. Michael J. Fox has done a superior job for Parkinson's. Lance Armstrong has done an amazing job for Cancer. Natalie had a rare and important opportunity on LKL. Unfortunately, she blew it.

My expectations for the interview were fairly modest; educate folks about kidney disease and explain the need for organ donors. Instead, what we saw was a very narrow personal perspective, a misrepresentation of many facts, and a minimization of the struggle people face on a daily basis when in kidney failure. Here's a little snippet. There's more of the interview in associated clips.



Statements that pissed me off:

• "If I don't get a kidney, I will be fine." WRONG. Dialysis patients live an average of 7 years. Dialysis patients 60+ years live 4 years. She's 59, BTW. Also, 20% of dialysis patients die every year. Dialysis patients are hospitalized an average of twice a year. Dialysis patients are at risk of heart disease, bone disease, anemia, neurological disorders, infection, blood clots etc. Through the interview, she downplays the difficulties of dialysis and ignores the very real risks.


• "Dialysis interrupts your life, but other than that...You read, you eat, watch TV, and nap."" Oh yeah, what a party. It's one of the biggest myths. People think we bound from the dialysis chair feeling like Superman. BULLSHIT. I've seen people puke, get vicious cramps, pass out, scream in pain, code (go into cardiac arrest), and get carted off in an ambulance. I've seen a senile old lady pull the needles from her arm and spurt blood all over the floor. She could have bled out. Fun for everyone. You are stuck in a chair and cannot move for four hours. Most people can only watch t.v. because their brain completely fogs out. The people I see look like zombies, not like vacationing debutantes. BTW, food is forbidden at my clinic because they're worried we could choke to death.


• "Dialysis takes 3 hours and 15 minutes." FOR HER. The time spent on the dialysis machine varies based on remaining function of the kidney, blood volume, body weight etc. The average dialysis time is 4 hours. Many people are on the machine even longer. Often times you have to wait for a machine. It can take 20 minutes to get on the machine and 20 minutes to get disconnected (sometimes more). There's also travel time to and from the center. So most people are looking at a 6 hour + experience three times a week. This is the part time job you never wanted. It's not merely inconvenient. In fact, it's so difficult that only 23% of people on dialysis work regular jobs.


• "I have the healthiest blood on the planet." WRONG. WRONG. WRONG. Dialysis, at its best, is a substitute for 15% of normal kidney function. She also didn't adequately explain that dialysis not only filters toxins from the blood, but also removes excess fluid from the body that your kidneys can no longer get get rid of. For example, in each dialysis treatment they remove over 6 pounds of fluid from my body in the dialysis process. Imagine losing six pounds in such a short span. Most people feel like dog shit after dialysis. All Ms Cole would have to do to understand this is look around the freaking room the next time she's in dialysis.


• "All dialysis facilities are the same." Wrong again. Here's just one example of a hundred of how they can be different. The facility that I go to discards dialyzers (the blood filter) after use. Other facilities clean their dialyzers with bleach and reuse them when the patient comes back for the next treatment.


• "I have been on dialysis in Istanbul, Milan..." Good for her, but Medicare and most insurance companies will not pay your dialysis costs if you go out of the U.S. BTW, dialysis costs close to 12K a week, or nearly 500k a year. She made no mention of the costs.


• She poo-pooed the National Kidney Foundation for focusing on "prevention." That's just stupid. Prevention can keep most of the 26 million people with kidney disease from progressing to kidney failure.


• "They really don't know what causes kidney failure or how kidneys work." That's absolute nonsense. The kidneys are one one of the best understood organs.

I apologize. I realize this has been a rant. I don't condemn Natalie Cole for how she got kidney failure, many would and do. I don't have an issue with her using celebrity to solicit an organ donor. I don't begrudge her that. Larry King held up a sheaf of people who sent email that they were willing to get tested. I think that's wonderful.

What I don't like is that she was poorly informed and a poor advocate for the rest of us. And that's why Natalie Cole sucks.

If you are interested in learning more about organ donation, please click the graphic above or visit http://www.donatelife.net/.

Organ Trafficking (not the fun kind)

January 19, 2009

It is Martin Luther King Day. He is a personal hero of mine. I can't watch his "I have a dream" speech without getting electric shivers and wet eyes. It is also one day before the inauguration of President-elect Barack Obama. The historical significance is not lost on any of us. Change is palpable. It is as if a stranglet has escaped the Large Hadron Collider and is spinning, infecting and consuming all rational matter. It's damned exciting. I made my satellite-high expectations clear for Mr. Obama's speech in my last blog. We're all waiting for the national policy, health care, and economic reforms to come. However, I'd like to appeal for one more change.

America must stop all illegal organ trafficking.

Not the change you expected me to appeal for? In Newsweek on January 10th, Janeen Interlandi reported in her story "Not Just Urban Legend" that human organ trafficking has made its way to the U.S. of A. It's a very informative article and I highly recommend you read it just for the horror factor.

I'm just going to cut right to the chase. There is severe tension in the system. As of 3:28 PM EST, there are 78, 197 people on the kidney transplant waiting list. In many parts of the U.S., the wait for a cadaveric kidney can be up to 10 years with a national median waiting time close to six years. The average patient on dialysis lives 5-7 years. Not very promising. Add to this the fact that a donation from a living person can extend the life of a transplanted kidney from 11 years to 19 years. This creates all the conditions for a thriving black market. Indeed, that's what happening. What's shocking is that some surgeons and transplant centers are pretending not to notice and do not ask questions a when a living donor emerges from thin air and doesn't speak English. I can tell you from personal experience that transplant centers review donor candidates rigorously. So, to turn a blind eye is deliberate. Why on earth would they do this? It is simple really; no one wants to see someone die waiting for an organ transplant.

The ethics here are complicated and not as black and white as they might appear. The basic question is...what would you do to stay alive? Especially if you have the means to pay. Is this fair to those that don't have the means? In contrast, if you are desperately poor and have no hope to improve the life of your family, what do you do? The world endlessly debates the right for people to treat their bodies as commodities without resolution. I must remind you that I am just at the beginning of this journey so I can't pretend to know the abject desperation a person must feel as their life dwindles away waiting for a transplant. I also live in a rich country. I have no idea what it is like to go hungry or have little hope for the future. However, I think it is important to take a stand based on my personal ethics.

Here it is: organ trafficking is evil and repugnant. I would rather die than deprive another person of their opportunity for life. I would rather die than exploit another who has no alternative means.

You see, I also have a dream. I have a dream that the world will wake up and the rich and poor will be treated equally. I have a dream that people will sign up to be donors in order to make sense of what could be senseless waste. I have a dream that healthy and generous heroes exist and will continue to give the gift of life. I have the dream that you will join me and sign up to be donor at http://www.donatelife.net/.

As for me, I will wait for my turn and hope to live.