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/

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/.