November 11, 2010 7:03 PM

Kidney Chains Link Total Strangers Saving Lives

By
Katie Couric
(CBS)  Updated 11.11.10

Since our story last night, Garet Hil says, 204 people have signed up to donate a kidney and start a new chain. That's a huge jump from the one or two they get on a normal day.

The work of the National Kidney Registryhas galvanized 50 centers across the country, transplanting record numbers of kidney patients over the last three years. On Thursday, the momentum will continue with the largest kidney chain to date, a swap that is expected to save 28 lives at the Methodist San Antonio Transplant Center in San Antonio, Texas.

A couple who are on a mission to help took CBS Evening News anchor Katie Couric inside an earlier kidney exchange. They're a group of people bound by selflessness and the American Spirit.




Three years ago, Jan and Garet Hil watched their life unravel when their 10-year-old daughter, Samantha, had complete kidney failure brought on by a rare genetic disease.

"We really have experienced, I think, just about every barrier that you could possibly hit," Jan said.

"Before this diagnosis," Couric asked, "you knew nothing about kidney failure?"

"I knew nothing about it," Jan replied.

"I didn't even know I had two kidneys before this," Garet said. "It was, you know, not on the radar."

They began a frantic search for a kidney. Samantha finally found a good match from her 23-year-old cousin. But the experience inspired Garet to help other desperate families.

To submit an idea for The American Spirit send us an email.

He applied his skills as CEO of a software company to launch the National Kidney Registry- the largest national database of living donors in the country.

(Scroll down to learn how to be an organ donor.)

"The bigger the swap you can get done, the more people can get transplanted faster," Garet said.

Today, his database holds nearly 100,000 records of people who need kidneys and their loved ones willing to give up one of theirs to anyone who promises to keep the donor chain going.

"That's the fascinating thing," Garet said. "You don't know where it's going to go."

That's what we found when we went inside one of their swaps, saving 10 lives in three states. There were 20 surgeries in all - most of them happening over a 6-day period.

It all started with Max Zapata, from Clovis, Calif., who kicked off this chain as the "good Samaritan" donor. He gave a kidney and expected nothing in return.

"I just really felt that it was something that I needed to do in my heart," Zapata said. "I didn't know where it would go, but that I knew that it would be something that would help someone out."

Zapata gave his kidney to 25-year-old Laura Amador - a vibrant college athlete, whose lungs and kidneys were failing as the result of a rare autoimmune disorder.

"I was scared, I was terrified," Amador said. "How does somebody go from this active college life, to one minute, I can't walk?"

Web Extra: Transplant Surgeon Dr. Sandip Kapur

Amador got Zapata's kidney because her brother Paul agreed to donate his kidney to another stranger, Kirk Larson, a 45-year-old geologist.

Larson's wife, Teresa, would donate her kidney to someone on the other side of the country.

"The more involved you get and the deeper you get into the process - it's a totally exciting experience really," Teresa said.

Teresa Larson's kidney travelled over 3,000 miles to New York Presbyterian Hospital to save Melvin Gellman - a spry 83-year-old lawyer from Long Island. Gellman is probably too old to have received a kidney off a normal waiting list.

"It's wonderful. I'm glad I got here," Gellman said. "I've been living for this day."

His transplant was happening because a close family friend, Tonya Nye, was giving her kidney to Maria Polli, a mother who thought she would have to wait seven years.

"I don't know if I could ever thank her enough," Polli said. "It is hard to not be able to do things with your kids when you want to."

The chain of life continued from Polli's husband John to Simeon. From his son John to Lee. From his daughter Lauren to Daniel. From his friend Clint to Fred. From his wife Yvette to Greg. Greg's uncle Johnny Guarnes donated to the last patient in this chain, Mindel Faustino.

Faustino expected to die waiting. But he received a call that Guarnes was his perfect match.

Faustino said, "I hope there's a lot more men like him."

The kidney chain has had a profound effect on Garet Hil. "What we're doing right now, has had more impact than anything I've done, you know, ever."

One year after Max Zapata kicked off the kidney chain, all 10 patients are doing well.

"When you see those people who have come out of these swaps and they've got the transplant, it's a miracle," Garet said.

Become a Kidney Donor
National Kidney Registry
Donate Life America

Participating Kidney Chain Centers
New York-Presbyterian/Weill-Cornell
New York Presbyterian Transplant
Pinnacle Health Systems
UCSF Medical Center
UCLA Medical Center
Stanford University Medical Center

Copyright 2010 CBS. All rights reserved.
Add a Comment See all 25 Comments
by max2538 November 19, 2010 6:50 PM EST
Follow up to my last comment from Max, Please remember that when you Donate you not only help the recepients but as I have been made aware of since this my Donation, You also help the recepients family, loved one and anyone connected to them because they also have Blessings in being able to move forward in their lives instead of always being in hurting situations with that special individual who is waiting a transplant! Again God Bless You all! Max
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by max2538 November 19, 2010 6:36 PM EST
Greetings I am Max Zapata and I am Truly honored and Blessed to have been able to Donate one of my Kidneys to Laura Amador! The fact that it turned into a chain of this caliber is simply humbling. I am very thankful to all who have taken part from the very beginning to help me be able to accomplish this journey! From my Prayers in the beginning to the wonderful people in the hospitals, to the news personel, Loved ones, many friends and many who we don't even know, who supported us through prayer and thoughts to all who recieved and suffered so much until they recieved their new Kidneys, I want everyone to know that this journey has as many commented not always been painless but definately one of the greatest journeys I have ever been involved with! I would definately do it again! I never did it for any publicity and many who know me are aware that if I would of had it my way I would of donated and left the building, as the saying goes, but I have now learned that stories like this are for awareness so that many will know that there is Hope and Please don't give up if your waiting today because these great donor chains are truly saving many! Will everyone be saved I don't know but one thing for sure, as is the case with our chain and many others, many lives are pressing forward because of Donors! Please Pray and make a decision to help somone today! You will go through many appointments to evaluate you before any surgery is done, and you will know if its the right opportunity for you. I am in great health today but none of us knows the future so what will happen tomorrow I won't worry about, I will just continue to do all that God allows me to do today in helping others!If you have any questions or concerns about my personal experience contact me at holyspirit2538@aol.com and I would be happy to share with anyone. Would I do it again? Definately, any negatives, if you can call them that, are nothing to me compared to the Blessings of Helping Someone in need! I also am looking to possibly donate in other ways. God Bless, Max
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by giftoflife4all November 14, 2010 9:32 PM EST
Living donors are true American heroes, and I agree with livingdonor101 that they need more follow-up, and to be fully informed of all the risks. My transplant center CPMC is very thorough about informed consent. Several years ago they have adopted a wonderful software, Matchmaker (Silverstonesolutions.com) that has been in use for three years saving lives, families helping families, loved ones helping loved ones.

Not all people facing ESRD, not all kidney patients, not all of us have loved ones who can be our donor or participate in a paired exchange. That was my situation after my father, aunt and beloved younger brother all died while waiting for a deceased donor on the broken UNOS list. That might have been my fate as well were it not for the visionary work of Paul Dooley, CEO of MatchingDonors.com. When he pioneered the site, he had lost his own father to kidney disease. It was very controversial back in 2004, because there were so many medical professionals who did not believe that true altruists would donate a kidney and ask nothing in return. Now six years later, MatchingDonors.com has saved over 140 lives by providing a forum and a format for potential donors, ALTRUISTIC donors to reach patients in need. Not everyone should, can or will become a living donor. As they say in tv ads, "it's not for everyone." But for those of us who wish to consider being a donor, you can go on the site and see many true stories of donors, from every race, religion, and creed giving to others like or unlike themselves. The common misconception that a living donor will only give to someone with a pretty picture is a blatant falsehood. I received the gift of life from Sally Kennerson, a mother of three to whom I am forever indebted. Sally has asked nothing in return, in the past five and half years. Having a transplant has changed my life in ways I never imagined possible. I work with a non-profit, doing support groups for low income kidney patients through Kidney Community Education, Community Action Marin. I look for a day in the future when no one need die awaiting transplant. That is a future we can create together. Well time to take meds, the alarm is going off...
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by jakerrss November 13, 2010 12:47 PM EST
Hi there my name is jakers an this is my story... So when i was 2 or 3 my kidney totally shut down on me an i was immediately put on pd dialysis at ohsu an was one of the youngest patients ta start dialysis... After about 5 long years they had found a donor an it was my dad,(thanks pappy) so i got the transplant an everything worked out very very good.... about 4 years ago i decided ta stop taking my pills because I've been taking them scene i was 2 or 3 an I take like 12 pills twice day an i got tired of taking them an stopped them (not a very good idea at all)... So on April 20 2008 wid the help of my moppy (mom) I decided ta go to the er an get help, the immediately took me ta surgery an put a port in my chest an had me start dialysis right away... If i didnt go i would probly be dead by now an laying in a hole an would not be writing this true story today... Now i have been on dialysis for bout 2 half years now an feel a hole lot better now, except my left arm is shot from the needs that they use for treatment.... now I am starting my new job/career being a dialysis patient tech helping others make sure they get there treatment done,(I will be putting people on so that they can get dialized an feel much better)... this is a true story by Jake niece...
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by kidneyrecipient1993 November 12, 2010 12:07 AM EST
My name is Greg Pellom, I am 47 years old in 1990 I lost both of my kidney's for no reason, I was healthy one day and the next day I was in ICU fighting for my life. My doctor herein Dalton, Ga where I live has said that I am the sickest patient he has ever had to live. I was on dialysis for three years. On October 26th 1993 at 2 in the morning I received a kidney transplant at University of Alabama at Birmingham. I have four wonderfull kids and a beautiful wife, but there is one thing missing I do not know who my donor family is. But I am happy with my family and a kidney of 17 years.
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by frakasmen November 11, 2010 2:12 PM EST
Wow, livingdonor101 was an eye opening side of organ donations.
It was NOT OUR Experience.
It would be interesting to know what % of living donors actually have problems post op and the following years.

My Brother in Law donated his kidney to me, he was so psyched to do it and i told him at every step he didnt have to and could back out at any time. In Canada ( Vancouver ) the donor is the # 1 concern over the recipient and thats the way I ( recipient ) wanted it.

its been 1.5 years since the transplant. My donor has been followed by his GP and at the 1 year checkup he is in amazing health. His kidney function is Very normal, HIS REMAINING KIDNEY HAS INCREASED IN SIZE TO MAKE UP FOR THE LOSS OF ONE. HE IS PLAYING RECREATIONAL HOCKEY AND HAVING A FEW BEERS AS WELL. HE IS VERY ACTIVE / PHYSICAL IN HIS PROFESSION AND CONTINUES TO BE SO.

He did go through discomfort post surgery and the following week but thats the nature of surgery.

His gift has totaly changed my and my families lives for the better.
We pray he will stay in good health as he especially deserves it.
For my part, this remarkable gift has changed my life and we're always looking for opportunities to pay it forward.

He see's the organ donation as his proudest moment in his 44 years and would do it again if possible.

Thats our story.
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by livingdonor101 November 11, 2010 11:56 AM EST
It's unfortunate this story is so one-sided.

First off, 1/3 of the waitlist is inactive, meaning the individuals couldn't receive a transplant even if an organ became available; 10% of names are duplicates; 52% of the deaths are also inactive.

Secondly, while the story says all 10 recipients are doing well, how are the living donors? According to OPTN data, 4.4 living donors die each year in the US within 12 months of surgery. Many more experience permanent nerve damage, pancreatitis, hernias, intestinal blockage, testicular swelling and sensitivity, chylous ascites (lymph leakage), adrenal dysfunction, etc.

20-30% of living donors experience depression, anxiety, and PTSD post-surgery, yet not a single transplant center offers support services of aftercare.

There is NO comprehensive long-term data on living donors health and well being. The transplant industry has been using living donors since 1954 but didn't bother to collect identifying info (SSN) until 1994. OPTN has required all transplant ctrs to report one-year of follow-up since 2000 yet 40% of LDs are lost within 6 months and another 40% before the one-year mark. Some hospitals have reported all of their LDs as 'lost to followup'. They have suffered no repercussions for their noncompliance and continue to profit from living donor transplants.

Transplants are not cures, nor are they lifesaving. They are a treatment option that permanently compromises a healthy human being for the potential benefit of a sick one. Meanwhile, living with reduced kidney function, as living donors do, means a lifetime higher risk of hypertension, cardiac disease and death, and kidney disease and death. Since 1994, over 200 living kidney donors have registered on the waitlist in need of their own transplants.

Since the Hills are instrumental in soliciting these living donors, will they pay their future medical bills? At the very least, shouldn't they donate a kidney each too?

www.livingdonor101.com
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by Morning64 November 11, 2010 12:28 PM EST
In short....I am a living kidney donor .... 18 years ago I donated to my sister....I have had numerous medical problems related to the kidney donation....I completely agree with the above comment/message from www.livingdonor101.com
by donnadls November 11, 2010 1:29 PM EST
I donated a Kidney to a cousin of mine a couple of years ago. Unfortunately it didn't work for him and the artery the kidney was attached to ruptured and he lost the kidney. If I had an extra kidney I would definitely donate again. There is nothing better than to be able to give the gift of life to someone in need. I haven't had any issues since the transplant.
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by LIFESHARERS November 11, 2010 10:57 AM EST
Your story about The Kidney Chain and Organ Donation highlighted the tragic shortage of human organs for transplant operations.

There are now over 108,000 people on the National Transplant Waiting List, with over 50% of these people dying before they get a transplant. Most of these deaths are needless. Americans bury or cremate 20,000 transplantable organs every year.

There is a simple way to put a big dent in the organ shortage ? give donated organs first to people who have agreed to donate their own organs when they die.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition. LifeSharers has over 14,200 members at this writing, including 775 members in New York.

Please contact me - Dave Undis, Executive Director of LifeSharers - if your viewers would like to learn more about our innovative approach to increasing the number of organ donors. I can arrange interviews with some of our local members if you're interested. My email address is daveundis@lifesharers.org. My phone number is 615-351-8622.
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by gisaacson November 10, 2010 10:25 PM EST
I just watched your segment on kideny donation which is really a great thing for people to get involved. At the present time I am looking for a kidney but don't have anyone to swap. All I am doing is waiting 3-5 years for the gift of life. I am O+ and I am looking for any O or A+ that are healthy. I am in Colmbus, OH area if you are interested please email me at dgisaacson@aol.com and I can give all the infomation.
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by KidneyDonorandMatchmaker November 10, 2010 10:28 PM EST
In order for someone blood type O to get a kidney from someone blood type A - the person has to be A subtype2 which I was told may be only about 10% of people who are blood type A. Otherwise blood type A can only donate a kidney to someone who is blood type A or AB.

Best of luck to you! Feel free to contact me as well - KidneyMitzvah@aol.com
by KidneyDonorandMatchmaker November 10, 2010 10:25 PM EST
HELP SAVE LIFE OF YOUNG MOTHER OF 2 LITTLE KIDS!

Vanessa, mother of 2 little kids on dialysis for about 14 years, desperately needs a kidney.

SHE HAS ONLY A 1% CHANCE IN FINDING A MATCH. HELP!!!

If you are not a match, she would greatly appreciate if you can possibly join the swap program at a hospital she is registered with, that can increase her chances greatly in getting a kidney. Here is a the link for a video I put on YouTube about Vanessa. http://www.youtube.com/watch?v=6MdN4t8MAac

Please contact me for more info.

Also, being a kidney donor myself, I can give you all the info you need.

Sincerely,


Chaya Lipschutz

E-mail: KidneyMitzvah@aol.com

Website: SaveALife-DonateAKidney.com

My YouTube video on kidney donation: http://www.youtube.com/watch?v=JtZ7KModWRU
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