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/

You Are Invited

April 23, 2010

If you're in the Portland vicinity on May 19th,  I'd like to invite you to hear me read my award winning poems at the 100th Monkey Studio as part of the Figures of Speech reading series.  I have the honor of reading with Marie Buckley, President of the Oregon State Poetry Association.  No fooling.  The reading starts at 7 p.m. and there will be cookies!  If you've never been to a reading, they're very casual and welcoming.   I promise there will be plenty of laughs (mostly at my expense).  Please mark it on your calendar and join me.

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

Health Care Bill--The Oregon Whip Count

March 20, 2010 (9:00 p.m.)

Here's the current status of the Oregon members of the U.S. House of representatives for the Health Care Reform Bill--HR4872:

Oregon 1st     David Wu             DEM   YES  http://www.house.gov/wu/
Oregon 2nd    Greg Walden        REP     NO   http://walden.house.gov/
Oregon 3rd     Earl Blumenauer   DEM   YES  http://blumenauer.house.gov/
Oregon 4th     Peter DeFazio       DEM   YES  http://defazio.house.gov/
Oregon 5th     Kurt Schrader       DEM   YES  http://schrader.house.gov/

Rep DeFazio took a dramatic stand and paved the way for Oregon's "Yes" votes by helping drive a last second deal to increase Medicare payments to doctors and hospitals.  In states like Oregon and Washington, Medicare pays 30% less for medical procedures and services than in states like New York or Florida.  This has made it very difficult for doctors to accept new Medicare patients and has been responsible for clinics and hospital closures in rural areas.  A number of states have been stuck with unfairly low payments based on a geographic formula in use since the Medicare was enacted in 1966.  The provision to increase payments and put in place new geographic reimbursement guidelines was in the original House bill, but not the Senate bill.   However, thanks to DeFazio it's back in.  You can read more details on the negotiations here: http://www.oregonlive.com/politics/index.ssf/2010/03/medicare_deal_reached_clearing.html

This is a good and necessary change.  Doctors in Oregon are cheering.  The only person who's not cheering is Representative Walden, a Republican, who is following the straight party line.  He's a strong "No" on health care and has been screaming "unfair" on "deem and pass" until he turned blue in the face.  Well, he's going to get his wish.  It was announced late today there will be a "up and down" vote on the bill.  This means that Nancy Pelosi and the White House are confident they have the votes.  Let's hope that they do. 

It's going to be an interesting next few days.  I believe there are fireworks to come because the Republicans have shifted into an insanely irrational gear.  I wish I could figure out how to explain to my conservative friends that health care is not welfare. They believe health care reform will be the end of democracy as we know it.  For the life of me, I can't figure out why.  This is one of the most pro business, capitalist reforms in history.  There is no rational reason for this fear.  True reform would have been to move to a single payer system, Medicare for everyone, or forcing all the health insurance companies to become not for profit organizations.  That's what needs to happen for true reform.  The Republicans should be cheering. They won and the American people lost.

Today is World Kidney Day

It's a great day to celebrate the organ that makes your pee!

Jon's Top 10 Kidney Facts

1. 1 out of every 750 people is born with only one kidney.  The darn things are so efficient that most never even know it.
2. The top causes of kidney failure are diabetes (44%) and high blood pressure (24%). 
3. More than 26 million Americans over age 20 have chronic kidney disease. This number represents approximately 13% of the adult population.
4. Chronic kidney disease has a disproportionate impact on minority populations, especially African Americans, Hispanics and Native Americans.
5. More than 526,000 Americans are currently receiving treatment for kidney failure. This includes more than 367,000 dialysis patients (like me) and 158,000 people with functioning transplants.  
6. About 83,000 patients are awaiting kidney transplants. 
7. Last year there were 16,828 transplants: 10,441 from deceased donors, and 6,387 from living donors.  That's not very many, although it seems like at least 75% of all television characters had a kidney transplant last year.
8. Each year, more than 87,000 Americans die from causes related to kidney failure.  The wait for a transplant can be up to 8 years in some parts of the country. 
9. The third and fourth leading causes of kidney failure in the U.S. are glomerulonephritis, an inflammatory disease of the kidneys, and polycystic kidney disease. These disorders account for 16 percent and 5 percent, respectively, of the new cases of kidney failure in the U.S.
10. Cardiovascular disease is the number one killer of people with chronic kidney disease.  People with early stages of CKD are 5 times more likely to die from heart disease than kidney failure.

** Data provided by UNOS and NKF.  http://optn.transplant.hrsa.gov/data/

In all seriousness, it is not hard to stay on top of this.  Check your blood pressure, mind your weight to avoid type 2 diabetes, and get tested once a year.  Kidney disease can be manageable.  I was diagnosed with kidney disease at age 19.  The doctors predicted that my kidneys would fail in two years.  However, with high blood pressure meds and some diligence, I was able to make my damaged kidneys last 22 years!

Sigh.  The following PSA is one of the worst awareness videos I've ever seen.  It's so awful, it's fun to watch.  Enjoy.

If you're not an organ donor, please consider becoming one.  ALL major religions and humanist organizations support organ donation and the gift of life.  Please visit http://www.donatelife.net/ for more information.

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

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.

The Poetry of Progress; a Thanksgiving Story

November 20, 2009

I had no idea this familiar poem had anything to do with Thanksgiving. I love Thanksgiving. I'm the pie guy in the family. It's a pleasure to cook a pumpkin pie and a pecan pie for the holiday. The last few years, the pies have even been edible! What is not so tasty is that I'm not good at giving actual thanks. In the spirit of the holiday, let me give it a shot.

When I started this crazy poetry obsession, I had no credits to my name. Heck, I had no name. There came a point where my blah, blah, blah about poetry seemed to bouncing off brick walls creating quite the echo chamber. So, I went on a self-imposed quiet period.

The quiet period is over. What a difference six months make. I've won several awards, local and national. I've been published and accepted for publication in some respectable journals. I am no longer creditless.

Most importantly, I've found a supportive Oregon poetry community. I joined the Oregon State Poetry Association and had the pleasure of attending two of their conferences and meeting some of the region's best poets.

I'm part of a group called the "Tall Poets Society" with award winning poets Steve Williams and Shawn Sorensen (we're all over 6'5"). The camaraderie has been wonderful and they've been very thoughtful in providing feedback on my work. Their great work has also inspired me.

When I was stuck with a bit of writer's block this fall, the very talented poet Constance Hall was kind enough to give me some encouragement and advice.

After seeing my work, a very generous Fran Turney sent me a classic book on Hiroshima. She also showed my poems "Japan 1944" and "Hanford" to Lawson Inada, the Poet Laureate of Oregon. This is especially meaningful for me because of his experiences in a U.S. Japanese internment camp.

Sandy Didner, a college professor in Florida, read my poem "Time and Fates of Man" and asked if she could teach it to her students. I also had the pleasure of offering encouragement and advice to a couple of young, talented kids whose creativity gives hope for our future.

My wife Tracey, who really isn't a huge poetry fan, puts up with a lot. She reads my poems, many times under protest. She helps me put together contest entries. She also endures more of my non-stop blah, blah, blah about poetry than you could imagine.

I need to stop myself. I just realized I did not actually say "thank you" to any of the people listed above. I just bragged about myself, again. Horrifying! I told you, I'm not very good at this thanking thing. One more time...

Thank you, everyone, for your kindness and support. Thank you for reading. You've enriched my life and work. You've made everything taste as good as pumpkin and pecan pies. I hope your Thanksgiving is as happy you've made mine.

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?

Names of the Dead

November 6, 2009

If you haven't heard, there's a huge vote in the next few days on the Healthcare Bill before the House of Representatives. The voting will likely follow strict party affiliation. Most Democrats will vote "Yea" while ALL Republicans will vote "Nay." When it comes to healthcare, my affiliation is very clear. I belong to the Human party.

What is the heck is the "Human" party? Quite simply: I choose people over political parties. I choose the rights of people over the rights of corporations. I choose to support the disadvantaged and the handicapped so that they will be able to help themselves. I choose to support healthcare as a basic human right and believe that healthcare for all is the new hallmark of truly great civilizations. Why? Because I know that every human being that has ever lived and lives now will grow sick or suffer injury and die. The only variation in that equation is length of suffering. This is the one experience we all share regardless of century, sex, race, religion, nationality and politics.

I support this bill. I know it is not perfect. I know that many of the proposed changes will not satisfy anyone due to cost, coverage and ideological beliefs. This includes my own belief that the only logical solution to healthcare is a single payer system. I support this bill because it is a start. We desperately need a start here in America. As the most advanced civilizations around the world have proved, universal healthcare does not cause the fabric of the universe to unravel, turn the people into slaves or make them fascism victims. Universal healthcare simply improves the quality of the lives of everyone, not just the rich or fortunate.

I think the seriousness of the issue is best shown on the site namesofthedead.com. Democratic House Member Alan Grayson sponsors it. The site gives voice to those people who have perished because of no health care insurance. You might not care for the politics behind the site, but the data comes from a study by authors from the Department of Medicine at the Cambridge Health Alliance, affiliated with Harvard Medical School. Click here to read a .pdf of the report for yourself. The conclusion: Every year 44,000 people die because of lack of health insurance. That's more than from kidney disease (42,000+), the root of my own advocacy. A just released John's Hopkins study shows that a lack of health care and insurance contributed to the deaths of 17,000 hospitalized children in the last 18 years.

More people die from lack of health care insurance every day than from automobile accidents and homicides combined. The consequences here are very real and demand we take action, imperfect or not, to make immediate improvements to our barbaric system.

I know most of you already have health insurance. However, instead of considering this a numerical or anonymous issue that doesn't affect you, I encourage you to spend five minutes to read some of the stories on namesofthedead.com. It will help you understand the true costs beyond dollars and statistics.

I was shocked to find the name and story of Theron Read from Salt Lake City. Theron was 44 when he died on a light rail train from a heart attack in late July. He, like me, was an actor and a poet. Theron had a pre-existing heart condition and worked for a small business that did not offer health insurance. He, unlike me, did not qualify for Medicare. Why kidney failure is covered and heart conditions are not points to the ludicrous labyrinth of the system. Theron made very little money and could not qualify for nor afford health insurance. He did not have the money to cover the costs of managing his chronic illness or pay for needed medications. He did the best he could with what he had and died needlessly before his time.

I knew Theron. We traveled the same circles and even did a show together in the 80's. He was gentle and kind, quirky and funny. Regardless of economic circumstances, Theron’s family, friends, and the larger community of writers, actors, and musicians in Salt Lake City loved and valued him. I am very sad to hear of his passing and the circumstances behind it.

My friends, healthcare reform is very real check on your morals and values. What do you believe and stand for? Have you thought about it? I have. I believe in humanity. I believe in optimism rather than pessimism, hope rather than despair, learning in place of dogma, truth over ignorance, tolerance in place of fear, and compassion over selfishness. I believe in the fullest realization of the best and noblest that we are capable of as human beings (thank you, Paul Kurtz). I condemn violence, the "I got mine so fuck you" crowd, and greed without purpose.

Please contact your local Representatives and Senators. Ask them to vote for healthcare reform. They won't do it, if you don't demand it.