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.

Jon Must Have Been High

December 9, 2009 --

The first year after I graduated college was brutal. The George Bush Sr. recession of the early 90s withered the economy. It wasn't a happy time for young people. If you don't remember what it was like, just think of the angry grunge music that replaced pop music and glam rock. Jobs for graduates were scarce. I felt like everything I'd been promised my whole life (work hard + college degree = good job) was a farce. Between acting gigs and contemplating grad school, I accumulated substantial debt and looked for a real job. To scrape by, I worked as a bouncer, a substitute teacher, a sheet rocker and and jewelery salesman. None of these jobs offered health insurance. I remember I thought I could get by for bit without it. I suffered from the same delusion of invincibility as today's 20 somethings. This is despite an early diagnosis of kidney disease I received in college (when I had insurance). I felt like I was on top of it with inexpensive high-blood pressure meds.

Then I blew out my knee playing basketball. It swelled as large as a truck tire and I couldn't walk. I had no money or insurance, so I delayed treatment and hoped it would just go away. No luck. After a week I dragged myself to the emergency room. For a $1000 bucks, money I didn't have and that added to my debt, they X-rayed me, drained the knee, and injected it with cortisone. I had a medial collateral ligament tear and needed surgery. The doctor recommended I see a specialist and a surgeon. When I explained I didn't have health insurance, he shrugged and gave me some steroids to keep the inflammation down and said, "good luck."

I did not get the surgery. Once I did get health insurance several years later I ended up going to rehab three separate times because my knee didn't heal correctly. Go figure. A few years ago I got an MRI that showed as a result for not getting proper treatment, I have degenerative arthritis in my knee. To this day I have a slight limp and chronic pain.

Moral of my story?

• Jon is stupid and was probably high
• Being poor and in debt sucks
• Working temp, part-time work, or for small biz usually means no insurance
• 20 somethings don't understand the need for health insurance
• Ignoring an injury or medical condition leads to life-long problems and lower quality of life

Often we think of the uninsured as chronically ill people who are refused coverage. This is only part of the story. If you want all the facts please visit, http://www.covertheuninsured.org/. It's a detailed site that uses non-partisan studies from the Robert Wood-Johnson foundation to give you the straight dope. It's worth a scan. Know the facts. One thing that drives me crazy is the assumption that people who don't have health insurance are lazy welfare seekers. Not true, see below.

As the senate does it's back-room deals, don't let them forget about young people. If they extend Medicare and compromise on other alternatives to for-profit health care insurance, they must not do it with their normal superficial ass covering. We need real solutions to help all uninsured people.

Mormons and Healthcare Reform

November 13, 2009

I had a very interesting conversation with my mother this week about healthcare reform. My mother retired from nursing a couple of years ago with forty years of hard won experience. She's literally seen it all. I'm a lucky man because my mother dropped everything to been there for me for all my surgeries and was a huge support when I experienced kidney failure. In fact, she was the first in line to ask to be evaluated as a donor.


So, I was extremely surprised when in the first few seconds of a conversation about healthcare reform, she started reciting word-for-word the conservative "talking points" against reform. Socialism, choice of doctors, rationing of care, wait times, the boogeyman of government controlled healthcare...you know the list. It was as if the spirit of Hannity and Beck poured directly out of her mouth.

As a bit of background, my mother is a true believing Mormon and lives in Salt Lake City. Mormons are notoriously conservative and have a powerful distrust of the government due to historical experiences from the nineteenth century. However, they've been progressive about healthcare in the past. The Mormon church was one of the first to extend healthcare benefits to the children of its employees to up 26 years of age. This policy is considered very progressive and has been included in the healthcare reform bills supported by the Obama administration. My mother's reaction seemed antithetical to the stories I heard all my life from her nursing career and the general charitable tenets usually espoused by the Mormon Church.

I was determined to understand this better and decided to do some research. I found the graph you seen on the left on Patchwork Nation (click the graph to go to the site). Patchwork Nation is a blog from the Christian Science Monitor that seeks to use demographic and survey data to break the country down beyond Red and Blue states. It shows how different majority populations around the U.S. perceive policy and social issues. It's a very interesting site.

The graph shows that areas of the country dominated by Mormons are the most skeptical of health care reform, by a huge margin. The site offers some explanations that you can read for yourself and mentions that survey sample size could be a problem.

Unfortunately, my mother isn't the only person from Salt Lake City to play back the Fox News lies and fear-mongering about healthcare reform. I have several friends from SLC who also repeated these same beliefs, including the ones that are outrageous lies (death panels etc.). What kind of echo chamber are the folks in Utah experiencing to get such rabid repetition? It's like they're reading from a single script. Can anyone help me understand this?

I'd just urge anyone who has concerns about healthcare reform and the reform bills to go to read factcheck.org. It's non-partisan. It debunks many of the irrational and nonsensical claims made by both conservatives AND liberals. Yes, there are distortions coming from the Democrats, too. This site focuses on the facts. Luckily for all of us, the facts support reform.

P.S.

Oh and hey Mom, did you see that AARP endorsed the House bill for healthcare reform? Also, did you know your son will depend upon government-provided Medicare to cover the costs of my kidney transplant and anti-rejection medication? Oh and Mom, did I tell you that because of Medicare, my mother-in-law got to choose her doctor for her cataract surgery? This meant she could come from to California to Oregon for the procedure, so that family could help her during her recovery. How's that for portability? Maybe you could give healthcare reform another look?

Can you believe it? Sotomayor has Diabetes!

May 28, 2009


The standard confirmation process for a Supreme Court nominee is a spectacle akin to the original Scopes trial. Countless political blowhards line up to testify, grandstand and pound their cymbals (and symbols) together like mechanical monkeys. They ask leading questions designed to force nominees to take nation polarizing stands on abortion, gun control, freedom of speech...you name it. Every topic is fair game for inquisition and speculation.

That brings me to Judge Sotomayor's diabetes. Much to my surprise, it isn't the standard political pundits or right wing opposition bringing up her type 1 diabetes. Nope, it's the media. Just Google "Sotomayor Diabetes" and you'll pull breathless reporting from media giants - Time: "Sotomayor Diabetes: Will it be a handicap?" , the Wall Street Journal: "Should Sotomayor’s Diabetes Be Considered In the Nomination Process?" and the Associated Press: "Sotomayor's diabetes helps shape views on discrimination". I could go on for 150 Google search page results. It's ridiculous, but it's also reality. Ignorance creates fear and even better headlines. The AP reports:

"Diabetes renders the 54-year-old Sotomayor more susceptible to heart disease, blindness, nerve damage and kidney damage. An estimated 23 million Americans — 8 percent of the population — have diabetes, according to the American Diabetes Association."

Gasp! How terrible. Can she really be considered for the Supreme Court? How could it be? Is the Obama administration insane? Ready to puke yet? I am.

The good news? Sotomayor and the Obama camp addressed the issue head on. They also went a step beyond and used the issue to help educate the public on basic diabetes information. That's amazing and thoughtful. The Huffington Post has the substance of her press release, "Sotomayor's Doctor Says her Diabetes is a Non-Issue." CNN's headline really cracked me up, "Sotomayor's Diabetes: She Overcomes it Every Day." Well, of course she does. It's a chronic illness, for hell's sake. The AP article is at least smart enough to point out:

"If the Senate confirms Sotomayor, she won't be the only Supreme Court justice to cope with a significant health condition. Chief Justice John G. Roberts has suffered seizures. Justice Ruth Bader Ginsburg has survived bouts of colon and pancreatic cancer. Justice John Paul Stevens, who's 89, underwent radiation therapy for prostate cancer in 1992."

Again, welcome to life, the ultimate process of dying. So what's my angle on all this? I'm freaking delighted. No sarcasm intended. We need people in positions of power that represent more than fake political ideals. Sotomayor has a chronic illness that she's proactively managed with insulin injections and diet since she was eight years old. Hallelujah, a success story! I see the results of poorly managed diabetes in my dialysis clinic three times a week. I can tell you without reservation that Sotomayor is a real role model.

Will her experience with a chronic illness affect her judicial temperament and philosophy? I sure hope so. She's more likely to understand the issues, rights, and laws concerning health care. She's more likely to have a humane perspective. That's not guaranteed of course, but she'll at least have hard won experience. Health care, disability, discrimination, and privacy won't be esoteric legal exercises. Folks, if you haven't figured it out yet, health care is the number one issue of the twenty-first century.