Altruistic Donors

Over the past few months, 6 people have contacted me who are donating a kidney. Some, are donating altruistically, others know who they are donated to, but didn't know their recipient before they heard about their need. Three are still in the evaluation process. Hearing their stories is so heart warming.

One person, Amy Maliborski donated a kidney after reading about that persons need from a note on the church's bulletin board. Amy was out of town when the plea for a donor was made during a service.

I've been telling Amy's story for months, so you could imagine my surprise when I saw an email from her. Amy contacted me after finding my website offering to help by speaking to other people intersted in donating.

I communicate with a fellow blogger, Nancy Murrell, another altruistic donor. Here's Nancy's blog from a conversation she had with Amy. You could follow Nancy at:

http://www.kidneymama.com


Nancy's Blog:
Living kidney donor: ‘I have a renewed hope about my ability to love’

In February, Amy Aliborski donated one of her kidneys to Annie Laib, a stranger whose need she heard about through her church bulletin. She kindly consented to share her experience as a living kidney donor below.

I have enjoyed this experience; more than I thought was possible. My life will never again be the same. I have discovered so much about myself, my friends and family. I am so much braver than I ever imagined.

I have a renewed sense of confidence in everyday situations. I tell myself , “If you can donate your kidney, you can do this.”

I have a renewed hope about my ability to love. For example, if I loved you (a stranger) enough to offer you part of me; I can love the person at work who typically drives me crazy.

This journey has also gifted me with a great sense of gratitude. I am so thankful for my health and for the health of my children. For the week that I didn’t feel so healthy, I realized how tough it must be for mothers with chronic diseases to take care of their families. One of my friends gave me a card that said, “Sleep, wealth and health must be interrupted in order to be appreciated.” So true.

I have learned how much my friends and family love me and how willing they are to protect me. I was so naïve when I initially thought that my husband and I would be able to manage everything during this experience on our own. Wrong! It felt good to accept the help, love and prayers from our friends and family. I have also learned how many of our friends have stories of people they know with kidney disease and transplants. It is an honor to be a symbol of hope for people waiting for a transplant.

More than anything, it has been a privilege to live out God’s message of love. It feels so good to have actually lived what God calls us to. As the Jesuits like to say: “Men (and women) for and with others.” This has given my life purpose and meaning.

So many people have said to me that they would have never been able to do this. But I know differently. There isn’t anything special about me, only that I was open to hearing God’s call and prayed for the faith to act on it.

My three children have been troupers during this experience. They didn’t really miss a beat. But, every once in awhile, I get a glimpse of how proud they are of me. Seeing Mom in the newspaper was exciting, but I see how thrilled they are when their teacher or basketball coach tells me how I have inspired them or how I am their hero. It is my hope that they will have learned compassion and patience through this journey.

It has been an honor and privilege to donate my kidney to a stranger (though she’s not a stranger any longer!)

– Amy Maliborski

Thanks, Amy!

And thank you Nancy!!!!



Harvey Mysel is a kidney transplant recipient and Founder of the Living Kidney Donors Network, a nonprofit organization that offers Workshops and Webinars to educate people in need of a kidney transplant about living kidney donation and help prepare them to effectively communicate their need to family members and friends. The Living Kidney Donors Network website is: www.lkdn.org and Harvey could be reached at: harvey@lkdn.org or follow him on Twitter www.twitter.com/harveymysel

In the News...All this in Just the Last Few Days

Since I'm a daily follower of the kidney transplant community, I read these stories every day. But many people don't realize the amazing events that are occurring day after day. Here's a brief look at the news of the past few days

• Heart recipient now reciving kidney from mom.

• In New Jersey, a 22 month old toddler gets kidney, her father donates to an L.A. man in five way paired kidney exchange from the National Kidney Registry. www.kidneyregistry.org

• The 69-year-old Stoughton man underwent a successful kidney transplant on Thursday at Massachusetts General Hospital in Boston, thanks to the kindness and generosity of someone he met via the Internet.

• Woman who wasn’t compatible with nephew wanted to donate anyway…ends up connecting with a man through the Web site www.matchingdonors.com

• UCSF and Hackensack University Medical Center complete three more paired exchange transplants. This swap included our youngest transplant recipient (a one year old baby) and one of our oldest recipients (a 75 year old man). This chain was started at Cornell in September and is on its 4th cluster.

• 1-year-old girl becomes youngest recipient in kidney donation chain.

• A USC surgeon, Dr. Inderbir Gill, removed fathers kidney, for his 8 year old son, though his belly button, a procedure that Gill pioneered.

• Three men and their moms are celebrating Valentine's Day with the gift of life. The men all stepped up to save their mothers' lives by donating a kidney.

• Customer donates kidney to grocery store clerk.

There are on average, 16 living kidney transplants EVERY DAY. These are the NORM, not the exception in the living transplant community.



Harvey Mysel is a kidney transplant recipient and Founder of the Living Kidney Donors Network, a nonprofit organization that offers Workshops and Webinars to educate people in need of a kidney transplant about living kidney donation and help prepare them to effectively communicate their need to family members and friends. The Living Kidney Donors Network website is: www.lkdn.org and Harvey could be reached at: harvey@lkdn.org or follow him on Twitter www.twitter.com/harveymysel

A Lesson to Learn about Living Kidney Donation

The following is a story that appeared in the Chicago Tribune on February 7, 2010.

Comment: This story may sound unique, however, different donor and recipient versions, occur more than 16 times, every day.

No one knows where a living kidney donor will come from, but they can only offer to donate if they are aware of someone's need. Here's what could happen when you let people know about your need for a kidney transplant.



Dan Coyne had the surprise all planned out: Near the end of Myra dela Vega's Friday night shift as a cashier at Jewel-Osco in Evanston, his children would buy some groceries and hand her a card. Inside would be the unexpected news that Coyne could donate one of his kidneys to dela Vega, who is suffering from renal failure.

But dela Vega, 49, who looked puzzled by the card, didn't open it. Instead, Coyne emerged from hiding and blurted out the news himself.

"Oh! Oh!" dela Vega said, covering her mouth as her knees started to buckle. Her eyes filled with tears. Later, she explained: "It's just so overwhelming to think someone is giving you an organ."

Nearly half of all the transplants in the U.S. are from living donors. Some are related by blood; others donate to a general pool; some, like Coyne, simply have an emotional connection with the recipient.

Currently, more than 105,596 people are waiting for an organ, according to the United Network for Organ Sharing registry. In Illinois, more than 4,600 people need transplants. Living donors, who are increasing in number every year, can lessen the gap.

Kidneys are the organ most commonly involved in living-donor transplants, because the body can function normally with only one of the fist-size organs.

The average wait for a kidney from a deceased donor in the Chicago region is about five years, said Dr. John Friedewald, a transplant nephrologist at Northwestern Memorial Hospital, where dela Vega will have her operation March 26. Dela Vega had been waiting more than a year.

Half of living-donor kidneys transplanted now will still function in 20 years, whereas half of kidneys from deceased donors fail in the first 10 years, Friedewald said. Patients also experience significantly less pain, a shorter hospital stay and can return to normal life much faster.

Coyne, an elementary school social worker, met dela Vega two years ago while grocery shopping. They struck up a friendship, and when he learned she was starting dialysis for kidney failure, he asked whether she would consider him as a donor.

Dela Vega, an Evanston single mom of two teenage children, had hoped her sister, who was coming in from the Philippines, could donate. When they learned she couldn't, Coyne repeated his offer. Last Wednesday, he was notified his blood and tissues were a match.

Initially Coyne's wife, Emily, had reservations about her husband's gift. But after seeing how much he wanted to do it, she relented. "I just hope he's OK with one," said Emily, a nurse.

Though any surgical procedure carries risk, studies have shown that donors' remaining kidney continues to function normally and will compensate for the loss. "The key is that the donor is in good health beforehand," said Friedewald.

"Life expectancy is the same and there's no increased risk of kidney disease for the donor," he added.

Coyne doesn't seem worried. His decision, he said, is a way to teach his children there are many ways to give.

"If you think how tenuous and difficult life can be for people around the world, it's nothing," said Coyne, referring to the earthquake in Haiti. "There is a risk of death, but the drive I make to work is riskier than the procedure."

The diminutive and spirited dela Vega, meanwhile, has already told Jewel-Osco store manager Paul Olson her future plans.

"On March 26, I'm on vacation," she yelled across the store after finally opening Coyne's handwritten invitation to Northwestern's Kovler Organ Transplantation Center. "Whether you like it or not!"

jdeardorff@tribune.com
Copyright © 2010, Chicago Tribune



Harvey Mysel is a kidney transplant recipient and Founder of the Living Kidney Donors Network, a nonprofit organization that offers Workshops and Webinars to educate people in need of a kidney transplant about living kidney donation and help prepare them to effectively communicate their need to family members and friends. The Living Kidney Donors Network website is: www.lkdn.org and Harvey could be reached at: harvey@lkdn.org or follow him on Twitter www.twitter.com/harveymysel

Kidney Mitzvah

The following article is shown in it's entirety. It appeared in Slate Magazine.

I apologize for it's length, but felt that it was an important subject to cover.


Slate Magazine
medical examiner
Kidney Mitzvah
Israel's remarkable new steps to solve its organ shortage.
By Sally Satel
Updated Wednesday, Jan. 27, 2010, at 4:47 PM ET

This month, Israel launched a new policy to encourage organ donation: Anyone who registers to allow his organs to be taken posthumously gets slight priority if he needs one in the future. When two comparably ill patients are in need, the tie will go to the organ-donation cardholder. The new policy garnered publicity in the Australian, Canadian, South African, and British press.

Meanwhile, under the radar, another, more dramatic Israeli initiative took place: giving compensation to families of deceased organ donors.

On Jan. 20, the relatives of a 51-year-old deceased man named Nachis Yafim gathered to accept a check for 10,000 Israeli shekel (roughly $2,700) in recognition of his wife Clara's decision to allow his liver, kidneys, and lungs to be taken for transplantation. The funds will be used by Clara and their 10-year-old son to memorialize Nachis—by paying for his headstone, for example.

In legalizing such a "memorial," Israel thus becomes the first country in the world to reward deceased organ donors. The Organ Donation Law, passed by the Knesset in 2008, says that families who agree to donate the organs of deceased loved ones may accept money to "memorialize" the deceased. Currently, the Israeli Ministry of Health has allowed up to 50,000 shekel, or $13,400, to do so. The money—given by nonprofit groups and taken out of their own pool of charitable contributions—may be used in any way the families see fit to memorialize the deceased.

According to the law, the donor, while alive, must not have refused to become a posthumous donor. This quells anxiety about a family benefiting over the objections of the donor himself.

The money for Nachis Yafim's family was given by ADI, a nonprofit organization outside of Tel Aviv that was established to encourage organ donation. It is named for Adi Ben Dror, who died of complications of kidney disease.

In the ceremony held in honor of Yafim, who emigrated from Russia and worked as a security guard in Be'er Sheva, Gadi Ben Dror, the director of ADI, said, in handing the check to Clara, "In this country we always talk about military heroism. ... [T]his is clearly a case of civilian heroism. [His organs] saved four lives. ... [T]he family should be blessed."

Donation at death is a big deal in Israel because of its infrequency. The country is lodged far down on the list of developed countries regarding the availability of deceased organs for transplantation: Nine donors per 1 million people. In comparison, that number is 35 in Spain and 25 in the United States. As of last year, only 8 percent of adult Israelis held organ-donor cards. In Europe, the rates are between 30 percent and 40 percent. In the United States, about 38 percent of adults with a driver's license were registered organ donors in 2009. In addition, the "conversion rate"—that is, the percentage of times a death meeting eligible criteria for donation becomes an actual donor—is 60 percent to 70 percent in the United States. (The rate depends, in large part, on whether families of deceased people agree when asked to give permission to retrieve the organs of loved ones—yes, even if one signs a card, hospitals will allow families to override the deceased donor's indicated preference.) In Spain, the conversion rate is around 80 percent. Israel's conversion rate is 45 percent.

Why such low rates? "Most Jews are under the mistaken impression that traditional Jewish law requires a body be buried whole at all costs," according to Robby Berman, director of the Halachic Organ Donor Society, an organization that encourages Jews all over the world to donate organs to the general population.

Another barrier to deceased donation has been the definition of death. Some ultra-Orthodox rabbis reject brain death as the definition of death because the ventilator is providing oxygen that allows the heart to beat for a few more days after brain death. They insist that the heart must cease to beat before a person can be pronounced dead—a condition making it difficult to obtain suitable organs in a timely manner. To facilitate donation, Israel passed a law in 2008 establishing "brain death" as the definition of death relevant for all legal purposes, including organ donation.

Why is Israel working so hard to increase donation now? Because Israelis can no longer participate in transplant tourism—that is, go abroad to obtain organs.

In 2008, a new law mandated that the Israeli Ministry of Health stop paying for transplants that were obtained in countries that themselves outlaw organ sales. This brought a stop to a policy that was in effect since 1998, when the ministry began covering the cost of transplants obtained from foreign donors. Israelis seeking organs had traveled to places such as Turkey, China, Eastern Europe, and the Philippines, though the exact number of transplant "tourists" is not known. As more Israelis received transplants this way, rates of donation by living relatives went down, according to the Ministry of Health.

Israel should be commended for moving to solve its organ problem, and save lives, by making two moral choices: first, to reduce transplant tourism; second, to provide compensation for deceased donation and priority ranking to encourage donations. This symmetry is critical to reducing the organ shortage in Israel and all over the world. Incentives must be paired with efforts to combat trafficking.

Alas, the World Health Organization, the Council of Europe, the United Nations, and the International Transplantation Society fail to grasp the need for such a two-pronged strategy. Instead, these groups endorse a strictly unilateral policy that bans organ trafficking. At first blush, yes, this seems reasonable. After all, corrupt brokers deceive indigent donors about the nature of surgery, cheat them out of payment, and ignore their post-surgical needs.

But clamping down on unlawful organ sales without first expanding the organ pool means more patient deaths, not less criminal activity. It drives corruption rings further underground or causes markets to blossom elsewhere around the globe. This is happening now. As China, Pakistan, and the Philippines have begun to curb illicit organ sales, places like Egypt, Eastern Europe, and South and Central America are becoming popular "tourist" sites.

Indeed, the global transplant establishment is so leery of benefiting donors or families directly—as in, for example, allowing Clara to use the 10,000 shekel to pay bills now that her husband is gone—that Israel had to put limits on how the cash was spent. I think this is too bad. Yafim would surely want his family to have some short-term financial cushion. Moreover, freedom to use the benefit as the family decides might be an even better incentive to donate.

Nonetheless, the compensation-for-memorialization is an important development that more countries should adopt.

When Gadi Ben Dror presented the check to Yafim's family, he said, "[We] owe the family our appreciation [which] we express with a gift. It's important to publicize their courage to donate organs in order to encourage others to donate as well." Within those sentiments lies the solution to the organ shortage: expressions of gratitude for a life-saving act intended to encourage others to do the same.
Sally Satel, M.D., a resident scholar at the American Enterprise Institute, is editor of When Altruism Isn't Enough: The Case for Compensating Kidney Donors.

Article URL: http://www.slate.com/id/2242791/

Copyright 2010 Washingtonpost.Newsweek Interactive Co. LLC

Transplant Update: UNOS data shows largest drop in organ donations in 20 years

The following is reprinted from the January 2010 issue of Nephrology News & Issues.

As transplant programs get more creative on finding ways to match organ donors and recipients...the transplant community is looking for new approaches on slowing a downward trend in organ donation.

The United Network for Organ Sharing reports that 10,916 organs were donated in the United States in 2009 (as of Dec. 11). That is a drop from donations in 2008 of 13,156-the largest year-to-year drop recorded since 1988. The agency shows that organ donation increased steadily from 1988 until 2007, when there was a slight decline. That has continued to slide until the major drop in donations this year.

The drop in donation is highest among living donors, which is a major source of organs for kidney transplants. The number of living donors dropped from a high of 6,647 in 2004 to 4,727 in 2009. Deceased donors also dropped from 6,325 in 2004 to 5,481 in 2009

Donations
Year Living Deceased
2004 6647 6325
2005 6571 6700
2006 6435 7178
2007 6043 7240
2008 5968 7188
2009 4727 5481

That drop in donations has had an impact on organ transplants performed. "The total number of transplants in the United States increased on average by 872 transplants per year between 1998 and 2006. Thus, the decrease of 713 transplants in 2007 represents a substantial divergence from the longstanding trend," UNOS said in its 2008 annual report from the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients." This drop was due largely to decreases in donation, particularly by living donors. There were 423 (6.3%) fewer living donors in 2007 than in 2006. Living donation has been decreasing since 2004."

There are 105,272 people on the national transplant waiting list as of December 2009; of this group, 82,956 are awaiting a kidney transplant.

The 2008 Annual Report of the OPTN and SRTR is based largely on data pertaining to the 10-year period from 1998 to 2007. The full report is available online at http://optn.transplant.hrsa.gov/ar2008

Why do you think the number of kidney transplants are decreasing? Any ideas on how to reverse the trend? Please share your thoughts.



Harvey Mysel is a kidney transplant recipient and Founder of the Living Kidney Donors Network, a nonprofit organization that offers Workshops and Webinars to educate people in need of a kidney transplant about living kidney donation and help prepare them to effectively communicate their need to family members and friends. The Living Kidney Donors Network website is: www.lkdn.org and Harvey could be reached at: harvey@lkdn.org or follow him on Twitter www.twitter.com/harveymysel

What's my PRA? It's the first question you should ask when pursuing a Kidney Transplant

When it comes to needing a kidney transplant most people are thinking about finding a compatible donor. They don’t realize that there is a test you need to take that will determine how easy or difficult it will be to find that person. The test is called PRA.

PRA’s are "panel reactive antibodies.” A blood test measures the level of antibodies in your blood. The more antibiodies you have, the more difficult it will be to find a compatible donor. A person's PRA can be anywhere from 0% to 99%. Your PRA represents the percent of the U.S. population that the antibodies in your blood would react negatively to. For example, having a PRA of 25 means that about 25% of the population will not be able to donate a kidney to you. The antibodies present in your blood would attack the transplanted kidney and can cause immediate rejection. About 20% of the people who need a kidney transplant have high PRA’s. Simply stated, having a high PRA will significantly limit the number of people that will be able to donate to you.

You can develop high PRA’s from a blood transfusion, or an earlier transplant or from being pregnant.

There are ways of lowering PRA’s through a procedure called Plasmapheresis a blood-cleansing process that can eliminate the dangerous antibodies from the blood. Plasmapheresis is used only in cases in which the patient has a live donor.

Plasmapheresis can also been used to allow blood-type incompatible donor/recipients to proceed with the transplant. Plasmapheresis can cost tens of thousands of dollars more than conventional transplants and are complex to administer.

If you’ve been told by a transplant center that you are too highly sensitized, (another term used to describe high PRA's,) to receive a transplant ask about Plasmapheresis. If they don’t offer it there, speak to another transplant center.


Harvey Mysel is a kidney transplant recipient and Founder of the Living Kidney Donors Network, a nonprofit organization that offers Workshops and Get-Togethers to educate people in need of a kidney transplant about living kidney donation and helps prepare them to effectively communicate their need to family members and friends. The Living Kidney Donors Network website is: www.lkdn.org and Harvey could be reached at: harvey@lkdn.org or follow him on Twitter www.twitter.com/harveymysel

"Matching" and Kidney Transplants - Myths and Misconceptions

The use of the terms “match”, “matching” or a “perfect match” are often misunderstood or misused when referring to a recipient and donor.

A more accurate way of describing the evaluation process is to use the terms, “suitable” and “compatible”. A suitable donor is someone that is healthy enough to donate. A donor is compatible when all the tests are finalized for the recipient and donor and it is shown that the prospective donor is able to donate to their recipient. When people say they are a "match", they usually mean that they are compatible to the recipient.

Generally, a recipient and donor aren't "matched" until they know that the donor is suitable and compatible.

The term “match” references the 6 HLA's (Human Leukcyte Antigens.) Before antirejection medications, 6 out of 6 antigens needed to match in order for the transplant to be successful. The new anti rejection drugs are so effective, that there isn’t a statistical difference in success rates between a zero match and a 5 out of 6 match. Therefore, HLA matching typically is not a factor that determines whether someone is compatible. There is however, a benefit to having a “perfect match,” 6 out of 6 antigens since the life of the transplanted kidney survives significantly longer. (On average, 28 years instead of 18 years for a 0 - 5 match,)

Donor and recipient matching is divided into three distinct areas: blood type matching, tissue type matching, (the HLA referenced above,) and cross matching.

Transplants are being done when donor and recipient have different blood types. A procedure called plasmapheresis on the recipient makes this possible. (Plasmapheresis will be a topic of another blog.)

Cross matching is a very sensitive and final test performed on a kidney donor and their recipient. The basic cross match test involves a mixing of the donors and recipients cells and serum to determine whether or not the recipient of a kidney will respond to the transplanted organ by attempting to reject it. A positive cross match means that the recipient has responded to the donor and that the transplant should not be carried out. A negative cross match means that the recipient has not responded to the donor and therefore transplantation should be safe.

While this language may appear a bit backwards, the cross match is the test indicating a “go” or” no go” for the transplant.

Either way hearing that there's a "match" is usually Great News!!

Harvey Mysel is a kidney transplant recipient and Founder of the Living Kidney Donors Network, a nonprofit organization that offers Workshops and Get-Togethers to educate people in need of a kidney transplant about living kidney donation and helps prepare them to effectively communicate their need to family members and friends. The Living Kidney Donors Network website is: www.lkdn.org and Harvey could be reached at: harvey@lkdn.org or follow him on Twitter www.twitter.com/harveymysel