My Amazing Donor

It's been a while since I've blogged, as I've been focusing on healing after my transplant.  However, I wanted to share more of my amazing luck.  I did meet my generous donor.  I also learned there was an 8th anonymous living donation in Oregon.  I truly hope this becomes a trend.  You can read the follow-up story from Don Colburn and the Oregonian: "Previously anonymous, kidney donor and recipient meet each other for the first time." 

I've also had the pleasure since of meeting my donor's husband, most of their daughters, and granddaughters (they've since added a grandson).   They are extraordinary and wonderful people.  My wife Tracey and I are looking forward to getting together with them again.

I also had the pleasure of seeing "D tour | a rock and roll movie about life, death and bodily functions."  This documentary shows Rogue Wave drummer Patrick Spurgeon and his quest for a kidney donor.  The story is amazing and surprising, and I highly recommend it.  Donate Life Northwest sponsored a special Portland screening.  The coolest part was I had the opportunity to meet Jim Granato, the director, in person.  After the film, Jim piped in Patrick on Skype to the big screen and they answered the audience's questions.  How cool is that?  It was terrific entertainment and a great way to learn about the power of organ donation.  Check out the trailer below.  
D Tour trailer from Jim Granato on Vimeo.

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/

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.