Tuesday, June 28, 2011

A NEW Twist to Kidney Paired Donations - "Perfect Matches"

Kidney Paired Donations, (KPD) A.K.A Paired Exchanges or swaps have become very popular. A KPD is when the donors of two or more incompatible donor/recipient pairs are willing to donate to the recipient of another incompatible pair.

Many hospitals do in house KPD's by matching their incompatible pairs...some hospitals have joined together with others in their area...and, there are a few organizations that have developed a "co-op" approach and have many hospitals that participate. One of the basic concepts of KPD's is that the more incompatible pairs you have in a pool, the more likely you are to find matches.

There are two national and one regional organization that "co-op" with hospitals to do KPD's. The National Kidney Registry, (NKR) www.kidneyregistry.org is doing more KPD’s than any other program. They are working with 60 transplant centers,(including the majority of the top 20 centers by 2010 transplant volume,) and have facilitated over 300 transplants since their first in February of 2008. Their transplant volume is doubling annually and expect to facilitate 260 transplants in 2011.

The Alliance for Paired Donation www.paireddonation.org is working with 80 transplant centers and have performed approximately 80 transplants since starting their program.

The New England Paired Kidney Exchange works with hospitals in Maine, New Hampshire, Connecticut, Massachusetts, Rhode Island, New Jersey and Philadelphia. Since they started doing KPD's in 2001 they have performed more than 90 transplants.

The NEW twist in KPD's is Compatible Paired Donations. In a Compatible Paired Donation, a compatible donor/recipient pair(s) is used to facilitate a transplant with an incompatible donor/recipient pair(s). The motivation for a Compatible Pair to join a KPD is to receive a better matched kidney than the one being offered by their donor. It could be a better matched HLA kidney, a kidney from a younger donor, or a kidney that is a better size. The goal is to have all recipients benefit by participating in such an exchange.

An ideal Compatible Donor/Recipient pair is one where the donor is a blood type "O", and their potential recipient is blood type "A", "B", or "AB".

If there are large numbers of people participating in KPD's, more Compatible Pairs will be motivated to join, not only to find a better matched donor, but to find a perfectly matched HLA donor. The half life of a perfectly matched living donor is 28 years, while ones that are not perfectly matched is about 18 years...a significant difference.

Not only do KPD's allow for successful outcomes for those that have a willing but incompatible donor...Compatible Pairs are participating with the hope of finding that "Perfect Match"... the NKR has already facilitated 2 "Perfect Matches."

Thursday, November 18, 2010

Living Kidney Donors Network Fundraising Event

Lisa Petrilli a Marketing/Social Media Consultant and kidney transplant recipient is hosting a fund raising event with The Drake Hotel in Chicago. This inaugural event is called Cocktails4Causes.

Lisa and her social media friends came up with a brilliant idea – tap into the social media enthusiasts who are making big things happen in Chicago to raise money for a different charity each month; enjoying cocktails and merriment in the process.

And what better time to kick it off than December in Chicago – when the holiday lights will be ablaze and classic holiday, nutmeg-scented coziness is mixed with good cheer in the famous Palm Court.

The Drake will be donating scrumptious hors d’oeuvres, plus the holiday booze, and 50% of the the money you spend at the bar will go towards the Living Kidney Donors Network.

So this is your cordial invitation to join us for cocktails at the Drake Hotel on Wednesday, December First from 6:30 p.m. to 8:30 p.m. to raise money for the Living Kidney Donors Network.

Lisa has also invited the local Organ Procurement Organization, the Gift of Hope who will also be there so that anyone who wants to give “First Person Consent” to be an organ and tissue donor. For each person that signs up with the Gift of Hope, The Drake will donate an additional dollar to the Living Kidney Donors Network!

Won’t you please help us make a difference by joining us on December First for Cocktails4Causes?

Use this link to go to the official EVite and to RSVP! We can’t wait to see you there – and your support means the world to us!


Thursday, October 28, 2010

(Here is Angela Stimpson's blog, who is a recent altruistic donor)

Tuesday, October 26, 2010
2,861 miles away and alive, in julia
My physical recovery from my surgery has been going so smoothly, and improving at a much faster rate than I had anticipated. I'm still feeling lethargic, but it's not stopping me from pushing forward. I'm running again - well, skipping/shuffling/scooting, is more like it. It's coming back, but I am taking it easy and only increasing my time/pace minimally to avoid any setbacks.

My emotional state since my donation has been better than expected as well. I feel fantastic, and probably more alive than ever. I feel like my spirit is lifted, my heart and soul is fulfilled. To be honest, I never really felt like this surgery was a 'big deal'. Yes, it was a pain in the a** getting stuck with a needle a thousand times, and all the emails, phone calls and organization of the logistics during this journey was quite honestly, just annoying. But that's it. No. Big. Deal. I hopped on the table in the O.R. for my surgery, I awoke hours later, I rested for a week and now I'm at close to 100%, or at least I feel like I am.

The past week or so I have been thinking more about my recipient. Wondering...How she was doing? Was she healing, or was she suffering setbacks? What about her new New York kidney - was it living up to its expectations, or was it checking out once in a while for a Pinot Grigio and a glance at Derek suffering the loss during his last game of the season? I have heard nothing from her transplant coordinator and decided that I would give her a call in about two weeks to see if she could 'check in' on my lil' kidney. She mentioned to me in a phone call the day after my surgery, that the recipient wanted to contact me and would do so by letter. Just like my grandmother waiting for her TV Guide Magazine, I sprinted to the mailbox daily, with hopes of seeing an envelope postmarked with a big "CA". I truly felt like I would never hear from her, and had pretty much accepted that, sadly, but never regretting once my decision to donate. Everything happens for a reason and I felt that if she didn't want to reach out to me, she had her good reasons, and that's ok.

On Saturday, October 23rd, I pulled an envelope from my mailbox, postmarked from Bakersfield, CA. I barely had a moment to retrieve it from the box before my heart and eyes poured tears of joy. My hands shaking, my eyes crying and my heart filling with purpose. I haven't cried that hard since Ricky Martin came out of the closet. It was ridiculous and had I been in front of an audience, I would have died of embarrassment. It took about 3 minutes before I could even open it, I was admiring her handwriting and my mind was buzzing with curiosity as to what was inside. Quite honestly, I didn't care. She could have inserted a coupon for a free car wash and signed her name and I would have been satisfied. Just the very thought of receiving contact from her was very emotional for me. I had been waiting and wanting, but truly feeling like it might not ever happen.

I pulled out the notebook paper folded neatly inside and out popped a small photo of her taken with her husband and daughter. So, again, the tears were flowing like a river and I'm gasping for air. Look! - it's my recipient, there she is with my kidney inside of her! She's real, and that's her family right there in front of my eyes! I can't believe it's real and that this is the person that is living freely with my crazy little bean inside of her. Unbelievable!

Her letter so beautifully scripted, so precise and elegant, so gracious and kind, thoughtful and caring. It was so much more than I ever had expected.

"...you donating your healthy kidney to me has given me
a second chance at living a longer, more healthy, and
more fulfilled life. You, Angela are my 'Angel' and I
will always hold on to that."

"...recovery for me has been going well. My labs have
been great and the doctors are happy with my new
kidney function."

"...know how grateful and thankful I am for the best
gift I could receive... your donation was the beginning
of a chain that will save so many other lives - may
God bless you abundantly for your act of kindess."

Two pages of sincere gratitude and honest thoughts that mean more to me than I ever imagined. After reading this, I now know that this was a big deal - a very big deal. It's really real and I am amazed that I am sitting here today in New York, and my kidney is 2,861 miles on the other side of this country providing a new lease on life inside a woman that I have never met. It has finally hit me and this entire journey that all along seemed so simple is now so much more. I am thrilled and filled, with emotion. I am blessed and proud to have given this gift. I am so very excited to begin a beautiful connection with this woman that will forever be a part of me, this woman named Julia.

Again I am asking you, the reader, to please just entertain the thought for a moment as to how easy and possible it is to donate your healthy kidney to another that so desperately needs it. I encourage you all to at the very least consider the conversation with yourself. You can't imagine how meaningful this experience is, and how little sacrifice you are making to provide someone with a much deserved quality of life that most of us take for granted. Ask me how you can become a non-directed kidney donor - how you can save a life.

Until next time... Happy Halloween!

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

Monday, October 25, 2010

A MUST see TV show.

Tomorrow night, Tues October 26th on HDNet, 9:00 Eastern Dan Rather reports on Kidney Paired Donations, the positive impact the National Kidney Registry is having, www.kidneyregistry.org and on Melissa Clynes transplant journey.

Here’s some background information. Melissa, now 18 had a heart transplant when she was 10 days old. When she was 13, Melissa needed a kidney transplant and her mother, Mary was her donor. Five years later, one year ago, Melissa’s kidney was failing and she needed another kidney transplant. As a result of the previous 2 transplants, Melissa was highly sensitized, meaning she developed antibodies that would significantly limit the number of people who would be able to donate to her. Melissa’s sister, Sarah wanted do donate, but was not compatible.

This past February, Mary Clynes' participated in one of the Living Kidney Donors Network webinars, “Having Your Donor Find You.” After the webinar, Mary contacted me and asked for help. We spoke many times and I educated Mary about the options that were available, one being paired kidney exchanges. I encouraged her to contact the National Kidney Registry. www.kidneyregistry.org

The National Kidney Registry was able to “match” Melissa with an altruistic donor that was working with the Loyola University Medical Center in Maywood, IL. Within a month, Melissa was one of the first transplants in what Loyola called a “Pay It Forward” program. Five months later, true to her commitment at the time Melissa received her kidney, her sister Sarah returned to Loyola and donated a kidney in the continued “Pay It Forward” campaign.

Monday, August 9, 2010

I was in Madison, WI to participate in the bi-annual Transplant Games. The event drew about 7,000 people, with over 1,600 athletes. It is so inspiring to participate and to see these individual’s push themselves to the limit in the equivalent to the Olympic summer events. While the winners certainly get accolades (and Gold, Silver and Bronze medal recognition), it is the struggling athlete that actually draws the most from the tremendous crowds. Many athletes, especially the ones finishing last react as if they’ve won the Gold Medal. The crowds’ applause for these athletes is louder than for those who won the Gold medal confirms their accomplishment. More than any other competition I have experienced, fellow athletes and spectators show tremendous support and encouragement to all that participate. Many are there just in recognition of their thriving health as a result of someone (or some family’s) self-less organ donation.

The aspect that I did not fully appreciate until I experienced it first hand was the deep and sustained “connection” that the thousands of donor family members have to the games. Many attend these events as a means to celebrate and honor their loved one’s lives. Some come to cheer on the athlete who has received a life saving organ from a loved one…truly a moving site. There is a tremendous focus and well deserved recognition given to these families and the difficult gift of life decision they had to make during a time of such personal loss. The Living Donors are also duly recognized for their gift of love. In an Olympic style opening ceremony, the Living Donors and the Donor Family Members are the last two groups to enter the stadium. They receive a thunderous standing ovation.

The goal of the games is to encourage transplant recipients to stay strong, live life to the fullest and to show the world that transplantation works. Another key purpose of this event is to focus attention on the need for donations. Throughout the program, the message that over 100,000 people are still waiting for a life saving transplant is clear, and the call to action for all of us is paramount.

This was my second Transplant Games. I was honored to attend and compete and look forward to doing so again in 2012.

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 reach

Thursday, June 17, 2010

I Have a Story to Tell You

Wouldn’t it be nice if….

Someone who is in need of a kidney transplant attended a Living Kidney Donors Network Workshop and was told to go out and tell everyone they meet about their situation ….imagine that this person puts a sign in his front yard explaining his need …..and places fliers on local community boards, in libraries, stores and banks that describe his situation. Imagine that the local newspaper would show an interest and write a story about him….and local TV stations would interview him….and CNN and other national media companies would air the story. Could you imagine that over 200 people would call this person to say that they want to help and offer to donate one of their kidneys? Could that really happen?

Well, you don’t have to imagine it….that is what happened to Mark Wolper last week.

I have been helping Mark and his friends returning phone calls and emails to all those people, thanking them. And to make this story even more interesting, these people have indicated that they are willing to donate to someone else when Mark finds his one donor.

Mark’s journey with all these new found friends is just starting, I’ll keep you up to date on his progress.

To view a video of Mark Wolper, click on the link at the bottom of the page at: www.lkdn.org

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

Monday, March 15, 2010

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:


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