Posts Tagged ‘Transplant recipient resources’

Recently, a new online community hit the scene:  Transplant Alliance.  Members can join each other for live chat or post on discussion boards, can create pages, form groups and identify friends, and more.  So far there are 52 members — the site is still new.  You can find my page there under the name “ChoppedLiver,” and I’ve also created a living donor group as a place to focus conversation on the issues unique to our experience.  I’m adding a perma-link to Transplant Alliance to the General Resources set of links in the right hand column.

This new site is similar in mission and purpose to the Transplant Cafe, an older and larger community of 750-plus members (with a massive amount of content) that I have blogged about before.  Join one, join both!  That site also has a page for yours truly under “Chopped Liver,” and a Living Donors Group that’s now 16 living donor members strong.


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I have Minnesota Public Radio and my linked-in mother both to thank for alerting me today to the passionate actions of Robert Redford’s son, James Redford, in promoting transplant awareness.  Seems his story is everywhere lately — he’s a liver transplant recipient, non-profit founder, and, like his father, a filmmaker, and one of the many things he’s done in support of the cause was a film called “Flow,” “a touching depiction of an encounter between a donor family member and a recipient.”  So cool.

[Side note: if you thought blogging about Pope Benedict attracted traffic to my humble little blog, just imagine what the name “Robert Redford” could do to get people here! (Robert Redford! Robert Redford!)]

At Jamie’s Web site for the James Redford Institute for Transplant Awareness, one of the features I noted with interest is a section called “Connect with Others.”  He offers links to three resources chat group resources, which I’ll check out and, if they seem to be active and relevant, I’ll add to my links at left.  Meanwhile I’ll try writing to Jamie to see if he can add the Greatest Gift Foundation‘s living donor registry project to his list, as well as Nelson Freytes’ terrific Transplant Cafe site, which is growing larger and more active by the day.  

As you may already know, one of the major activites of the Greatest Gift Foundation will be to connect would-be and past donors one-on-one for networking and conversation.  We’re already actively doing this today. If it’s something we can help you with, of if you’re interested in joining our roster of donors who are willing to connect with others, let us know by dropping us an email

Meanwhile, I’m thrilled to see Jamie Redford contributing to the cause with his star power and talents.  That’s a sun I’m eager to dance in.

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It’s like four blog posts in one today:  My Google news alerts have been practically bursting with stories of living donors these past few days.  Here is a quick digest of some of what’s out there:

  • This Friday in Maryland, Christy Manclark, a mother of two who’s waiting on the list for a kidney, is joining her husband and some friends to put on a show at the Amesbury Playhouse — called “Laughter for Life: a Celebration of Hope — as a fundraiser to offset costs for potential living donors down the line.  She’s using the National Transplant Assistance Fund to manage the money — a terrific resource for transplant recipients because it gives them a tax-free place to collect charitable donations for use to offset expenses related to transplant later on.  
  • Some of you already know that my liver donation in January 2006 at Northwestern Memorial Hospital was the Laparoscopic-Assisted Right Lobe Donor Hepatectomy, or, in plain English, the first time a living liver donor’s liver lobe was removed using a scope inserted through the belly button.  This less-invasive procedure not only is easier on the donor, but also results in a much shorter and straighter scar.   As evidence that the technique is catching on, I noted that last month the Henry Ford Hospital completed the first re-section of this kind in the state of Michigan, on Amy Frankford, who donated her liver to her father, Michael Frankford.
  • There’s a great story with great photos about Sid Kirkland, who spent his 43rd birthday last month donating a kidney to his friend Betsy Justice at Loma Linda Medical Center.
  •  Also in Michigan, the ABC12 news team aired a video segment last Friday on how plasmapheresis and paired donation registries like this one can help and have helped speed the process of finding matching donors. 

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Hey, America. It’s Liver Life Walk time!  One foot in front of the other at an easy pace, chatting with old friends and new ones and drinking free coffee, for just three miles or less, and voila!  More people are aware of liver disease and the prominence of it, and the American Liver Foundation has more money to do its fabulous work. 

If you’re a potential living donor of a liver, this is a great way to show your support for the people out there who need transplants and might not be so lucky.  Trust me — it’s also a great place to tell your story and get some support for yourself from that same community.

There are at least 13 regional walks going on in cities throughout the country, from California to Maryland.  Go to http://www.liverfoundation.org/walk to find the location and date of the walk nearest you (hint — click the large “find a walk near you” button to do this). 

Lest our kidney and bone marrow friends get jealous of the fun group exercise and comeraderie, fear not! You can learn about annual National Kidney Foundation’s walks around the country at http://www.kidney.org/news/kidneywalk/.  I don’t know if the National Marrow Donor Program has a walk program, but they do schedule events throughout the year — full schedule is here.

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One of the most promising new online resourcses I’ve seen for the transplant community is the Transplant Cafe, launched by the endlessly energetic and charming Nelson Freytes, who received a liver transplant in 1998.  Built on Ning.com, it’s like a self-contained version of Facebook — you can sign up for free and have your own page, you can link to “friends” who are also signed up, and you can leave messages (private or posted for public view) for people.  Nelson does a great job of giving everyone personal welcomes and drawing his cafe community’s attention to specific people who especially need thoughts and prayers or special recognition at any given time.  This is a welcome example of social networking being used well to connect people who need each other’s friendship and support.  Today there are 304 members, many of whom are prospective or past living donors, and it’s growing quickly.

I’ve got a page of my own, and I set up a group called “living organ donors” that anyone can join.  You can also chat with other members about the upcoming Transplant Games in Pittsburgh (look out world, my brother’s going to dominate in single’s table tennis!) and join or create groups on several other topics. 

Among the people you’ll find there, you’ll see a page for an optimistic and heroic guy named Ryan Egnaczyk, a 24-year-old Philadelphian who donated part of his liver for his young cousin, Michelle, who tragically did not make it for more than a few days past the surgery.   You’ll find Tom Simon, a vocal and kind FBI special agent who made headlines when he donated his kidney to a stranger he found via the controversial Matchingdonors.com — you can also find him on the public speaking circuit and at his personal blog, http://www.kidneychronicles.com.   You’ll find Becca Ketter, a mom who donated part of her liver to her then 17-month-old baby girl.  And that’s less than 1% of the stories you’ll find there.  

Hope to see you at the Cafe! 

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