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!

10 Astounding Facts About Jon's Kidney Transplant

May 27, 2010

After a lifetime of chronic kidney disease, kidney failure and 26 months of dialysis, I received a life saving kidney transplant on May 10, 2010.   

This amazing opportunity for me to live a second life is all due to the generosity of an anonymous living donor.  Anonymous living donor!?!  Yes, this is as extraordinary as it sounds.

Here  are 10 astounding facts to help you understand the rarity and true selflessess of this living donor.

1. There are an estimated 16,000 kidney transplants in the U.S. each year.  The vast majority of kidneys come from deceased donors.  Around 6,000 living donors direct their kidney to a family member or friend.  
2. Only 100 or so donations come from anonymous altruistic living donors. 
3. I am only the 7th person in Oregon history to receive a kidney this way.
4. The donor kidney matched me in 3 out 6 tested antigens.  This is the same number as if a parent had donated to me.  Direct siblings only have a 1 in 4 chance of matching 6 of 6 antigens.  The national average matching number of antigens is 1.78.
5. The two programs in Oregon who accept anonymous donations from the the Pacific Northwest Transplant Bank (PNTB) alternate.  Lucky for me, it was my program's (Legacy Transplant Services at Good Sam) turn.
6. There were 5 deceased donor kidney transplants in the 48 hours before they called me in, clearing the way for me to pop to the top of the list.
7. One person turned down the kidney before it was offered to me.  Why?  I will never know, but always wonder.
8. Every effort continues to be made to protect the donor and my identities. All I know about the donor is that "she" is about my age.  I also was able to glean from the docs that she's 5'6" or less and her kidney was big and healthy.  This was fortunate because I'm a big guy at 6'7" and 220 pounds!
9. The donor coordinators, nurses, doctors, pharmacists, surgeons and staff of Legacy Transplant Services and Good Sam have been consumate professionals.  I continue to receive the very best care imaginable.
10. According the the surgeon and observers, my operation was textbook perfect.  As soon as the donor kidney was attached to my blood supply, it "pinked up" and "peed" right on the spot. 
11. Bonus fact:  The picture on the right is an ultrasound of my new kidney given to me by the Good Sam ultrasound techs.  Their enthusiasm helped make my hospital recovery time fly by. 

Obviously, I am tearful, beyond grateful, overwhelmed and humbled by this gift.  I am putting together a thank you to explain to the donor my appreciation and the impact the new kidney has on me, my wife, family, friends, co-workers, and fellow poets.  My life has literally been saved and my life expectancy doubled.  My donor is my hero. 

I've expressed to the donor coordinator that I am a healthcare activist, I publish a blog, have a website and do not have any further expectations that my identity be kept a secret from the donor.  So in essence with this blog, I am coming out.   However, I have ultimate respect for the anonymity of my donor and no expectation that this person will ever reveal her identity.  I just want to honor her gift by living a good and productive life and when possible, give back to others.

That said, there are some more facts you should know:

As of 8:17 p.m. this evening, there are 85,223 people on the kidney transplant waiting list.  To date in 2010, there have been 4,282 transplants.  Of those transplants, 3,258 came from deceased donors and 1,024 from living donors.  Each day, 77 people receive the gift of life with an organ transplant.  Some people wait up to 7 years for their transplant. 19 people die each day waiting.** 

It is estimated that a kidney transplant has a postive impact of improving the life of up to 50 people.  Are you an organ donor?  Have you considered becoming a donor?  Learn more:  http://www.donatelifenw.com/

Have you ever dreamed of saving a life?   Does the idea of becoming an anonymous living donor intrigue you?   There is no greater or more selfless gift.  Learn more:  http://www.pntb.org/aldp.html 

**Data sources http://www.unos.org/data/ and http://organdonor.gov/

Organ Donation No Longer a "Pre-Existing Condition"

March 26, 2010

There is a horrible little secret in the organ donation world.   Insurance companies often punish living donors.  What?!  That's right they deemed organ donation a "pre-existing" condition.  What makes me queasy is that on one hand the transplant's recipient insurance company would pay the all the donor's hospital expenses and even travel costs.  On the other hand, the donor is screwed for their charitable act by their own insurance company or when applying for a new policy.

The true idiocy of this insurance practice is that only the healthiest people are ever allowed to donate.  Studies of living donors show it is very rare to experience any long-term adverse affects.  Some good news folks, the "pre-existing conditions" provision in the new health care reform law stops this practice.   

There's another great benefit.  The new law eliminates annual and lifetime service caps.  This helps folks with lifelong disabilities, chronic illnesses like kidney disease and cancer and people who experience any catastrophic health condition.  This will save hundreds of thousands of people from bankruptcy and despair.

There's one critical area of Medicare that heath care reform did not address concerning organ donation.  Medicare covers organ transplants, but only covers anti-rejection medications for 36 months.   Most transplanted organs last over ten years.  Anti-rejections meds run over a thousand dollars a month.  This puts the poor and people on fixed incomes in a horrible situation.  The ability to pay for anti-rejection medications can disqualify a person from ever getting a transplant. They get stuck on dialysis which is much more expensive in the long term than a transplant and medication.   It doesn't make much sense, does it?  There's was a great story in the Oregonian about a young mother in this very situation.  Click the link below to see the creative way her friends are helping her overcome this issue.  Hint: it involves wine.  Unfortunately, it's not an idea that scales to help everyone, but it is what we should expect until the issue is addressed.  That said, it has been a good week for change we can believe in.
http://blog.oregonlive.com/nwheadlines/2010/03/todays_headlines_wine-for-kidn.html

Open Letter to Senator Ron Wyden

December 17, 2009 --



Senator Wyden,

I voted for you and I'm very proud of your record and tireless work to reform healthcare insurance for all Americans. You are the real deal.

I urge you not to accept or support the Senate's healthcare bill in its current form.

Without offering an alternative to "for profit" health insurance the bill will fail Oregonians and all Americans. Available statistics show that "For Profit" health insurance is strangling the life out of our country. The reforms proposed in the Senate's bill will help, but without a "not for profit" healthcare alternative they will fall short. At every turn the "for profit" healthcare insurance industry chooses profit over people. Isn’t this antithetical to our American values? The Constitution of the United States begins “We the People…” not “We the Shareholders.”

Senator Wyden, I know firsthand what it is like to be held hostage by the healthcare insurance industry. As a 42 year old dialysis patient and kidney transplant candidate, I live with the financial burdens and pressures of managing a chronic illness through all the perils of our healthcare system. Daily life requires an extraordinary force of will. In fact, I am one of the only 23% of those with kidney failure who works full time in order to maintain my health insurance and get a second chance at life. However, through all my difficulties, I am not the person in need here.

The uninsured, uninsurable and the under-insured need your continued help.

Most of us have moved beyond hoping for a single-payer, non-profit system. However, expanding Medicare to cover more Americans is a brilliant idea. As a person with kidney failure, I am fortunate because I am allowed to enroll in Medicare. Because I work, Medicare is my secondary insurance and serves as a critical fallback that saves my family from desperation and poverty. Though the Medicare system is not perfect, it is superior to any proposed alternatives.

It just makes sense good to build on the Medicare infrastructure that is in place and works today. I urge you not to compromise on this key reform.

I also do what I can to help by advocating for healthcare reform with my blog. You can see this letter to you posted there (http://www.joneseaman.blogspot.com/). Of course my blog has a special focus on kidney disease, dialysis, and organ transplants. I sincerely hope that you are a registered donor and that I can continue to laud your achievements on my blog and support your reelection.

I greatly appreciate your service to Oregon and the United States of America.

Sincerely,
Jon E. Seaman

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?

Silence = Death

September 8, 2009

It's diabolical, really. The people who most need healthcare reform are the least able to lobby for it. If you’ve been following my blog, it’s no secret that I have kidney failure. I work fulltime in order to have health insurance to pay for dialysis and, hopefully one day, a kidney transplant. You may have noted this is my first blog in several months. Why? For the same reason I have not paid my way in the healthcare reform debate; I have a limited bank of energy and truthfully, I’m overdrawn.

Speaking of “overdrawn,” please allow me to use a personal example of the absurdity of our current system. My dialysis provider charges my insurance $10,000 a week, or $520,000 a year for my treatments. For the exact same services, my dialysis provider charges a Medicare patient around $1,000 dollars a week, or $52,000 a year.

Did I lose you yet? That’s $520,000 versus $52,000 a year for the exact same services. Ten to freaking one? How can this be? In what universe does this make any sense?

What’s happening here is that the dialysis company doesn’t make profit from Medicare patients. They break even. Therefore, the 10x from my insurance company provides the profit and subsidizes the Medicare patients. Sound absurd? Why would my health insurance company tolerate this? They tolerate this because at the end of a 30 month “coordination period” they get to turf me to Medicare. With the average transplant waiting list time up to 5-7 years and transplant costs averaging $250,000, thirty months of being overcharged is almost equitable. See http://www.transplantliving.org/beforethetransplant/finance/costs.aspx.

Folks, this is how the system distributes the pain of critically ill people. They call this “cost shifting” and this is just one of a thousand examples that reveal the house of cards used to construct our health care system. Cost shifting hides the true cost of illness, creates billing hot potatoes, and, last of all, it still fails the uninsured, the poor, and the unlucky. What’s worse is that cost shifting causes insurance companies, doctors, pharmacies, etc to raise premiums, prices and service fees. The truth is you pay for Medicare and the uninsured regardless of what you think. The money hides as fat in your premiums and payments. Pundits and industry wonks constantly debate cost shifting and its relation to Medicare. Some companies who have figured out how to work the system to their advantage have hired economists to bust the myth of cost shifting or discount it as a very small problem. Here’s my one word response: bullshit. Cost-shifting is real and pervasive.

You may have missed a tidbit from my true-to-life example above. Yes, I am 42 and am on Medicare. Does this surprise you? In 1972, the Social Security Act extended Medicare to anyone with End Stage Renal Disease as long as they paid into the Social Security system. A public option does exist today. You just need to be a special case to get it before you are 65. Truthfully, isn’t everyone a special case? Legally, aren’t we all of equal value? A lackey from my dialysis center actively discouraged me from signing up for Medicare early. She said “the company” wouldn’t like it. I’m sure they wouldn’t - they’re like all other companies whose sole purpose is to maximize profits and return dividends to investors.

Why shouldn’t you have the opportunity to choose the public option? The public option seems to be very good at setting price ceilings and eliminating excessive profits. It incentivizes efficiency. Let me be clear, profit can be a good thing that spurs innovation. However, it needs to be above board and visible. Why do we allow medical finance to hide behind all these twists and turns?

Matt Tiabbi of Rolling Stone has an excellent article on the whole health care reform disaster, at http://www.rollingstone.com/politics/story/29988909/sick_and_wrong/1. He brings up the point that America has 1300 different insurance companies all with different billing procedures and policies. They estimate a single-payer system would eliminate 350 billion dollars of needless overhead. This is more than enough money to pay for healthcare reform.

Why are we allowing the House, Senate and President Obama to take the single-payer system and the public option off the table? There will be no true reform without both. You know and I know it. The time for silence is over. It’s time for the sick to rise up and speak before it’s too late.

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.