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Posts Tagged ‘Networking’

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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I spend a lot of time diving through the transplant data that UNOS publishes, which is marvelously easy to do on the organization’s Web site.  One of my favorite stats to look up is one of the simplest ones they offer:  How many living donor transplants have happened so far this year?  It’s heartening to me to see those numbers, even though they represent the pain, suffering, sadness, and emotional hardship of people who needed transplants.

I suppose  I enjoy following the data most because it reminds me just how not alone living donors are in this country.  Case in point:  As of now, UNOS reports that 87,987 living donor kidney transplants have been conducted in this country since 1988 (the earliest year UNOS includes in its online reports).  87,987!  That’s about the population of Trenton, New Jersey, or Duluth, MN.  That’s almost enough people to completely fill the Rose Bowl stadium in Pasadena or Wembley Stadium in London; it’s heftily way too many to fit into the confines of Lambeau Field in Green Bay.  Imagine walking through the streets of Trenton or Duluth and knowing that every single person you encounter in the city limits is, like you, a past living kidney donor.  And knowing that every year about 6,400 people will be moving to town!  That’s right.  If you’re donating a kidney this year as a living donor in the United States, you’re in the company of about 6,400 others.  Out of a population of 301 million people in the U.S., 6,400 is not a huge number.  But it’s far, far away from being alone.

For living liver donors, the numbers are smaller, largely due to the riskier nature of the surgery in the years leading up to the past few.  (With new advances and increasing proof of success, I wonder how much living donation will increase for liver transplants.)  To date, my living donation of my liver to Joe was one of 3,588 such transplants in the United States since 1988.  About 300 happen per year.  That’s hardly a city, but it’s enough to fill in a nice little section or two at a stadium.  It’s more people than I’m friends with on Facebook and LinkedIn combined! 

Still, the yet-relatively small numbers we represent within the greater U.S. population just underscores the importance of sticking together, of finding each other and connecting when we can.

All the nation\'s living donors -- we wouldn\'t fit in Notre Dame stadium!

All the nation’s living donors:  Notre Dame stadium couldn’t hold us!

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Some living donors become bloggers, like me, and some bloggers become living donors, like Conspicuous Chick, a great writer, rocker girl, and soon to be living kidney donor who’s blogging at http://sirencristy.blogspot.com/.  She’s been talking to the world there since 2002, but now she’s interspersing fun variety content with great posts about her life pre-transplant.  This entry in particular has me cracking up.

I’m adding a link to the living donor blogs list at right.  Stop by and tell her good luck and hi.

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Living donors, you know a lot about what I’m about to talk about.  Transplant care coordinators, a required mainstay at every transplant program in the country, are an instrumental part of the experience we go through.  They are our gatekeepers, confidants, blood-drawers and needle-pokers, our advocates, weight-measurers and phone call answerers.  They are the ones who ask us over and over again how we feel and whether we’re consciously aware of our risks and benefits and implications of our decision.  They show us our MRIs, they show up after surgery before we’re lucid enough to know they’re there and again when we are.  They see us afterwards for checkups.  They explain what biopsies are, why we need certain Xrays and scans, what “bile leak” means.  They listen (when they’re good at their jobs).  They tell us the rules.  They give us permission to be scared and to ask questions. They are the only person who will consistently show their face everytime we visit the hospital.  They call us “hon” and “dear” sometimes.  Sometimes they don’t.  And sometimes they don’t call us back, period, when we’re desperate for them to.  What a job.  What a monumental, critical, necessary, and probably difficult job.

In my discussions with other living donors from around the country, it has been interesting to see that while everyone’s transplant care coordinator played a similar role in the journey, our satisfaction with their performance in that role is all over the map.  Some of us send flowers and mementos to our new lifelong transplant coordinator friend  after our surgeries, and never lose touch. Others of us cringe hearing their transplant care coordinator’s name.  Why is there such a spread of experiences?

My preparatory work for launching the Greatest Gift Foundation has put me in a unique position to talk to both donors and transplant care coordinators about their points of view on their role.  It has been enlightening, to say the least.  Some things I’ve learned, which I offer geniunely and not as an accusation or a defense:

  • There is a trend of high turnover among transplant care coordinators. Some programs struggle to keep a person in that role for a year or more, as care coordinators either accept different assignments or move around.
  • While transplant programs are required to offer dedicated transplant care coordinators, they are not required to hire a specific level of specialist (i.e. nurse practioner versus physician) or to have distinct coordinators just for living donors.  Larger programs with larger budgets and more established experience with living donor transplants tend to have dedicated care coordinators for living donors.  Smaller programs and state-run institutions tend to care for living donors and non-living donors with the same staff.  Many transplant programs couldn’t afford the luxury of dedicated coordinators for living donors even if they wanted to. 
  • Especially among care coordinators who are not dedicated just to living donors, much of their learning happens on the job.  Since living donors are still a minority among transplants, experience with the unique psychological, physical, and emotional experience of living donors comes one patient at a time, as they go along.
  • Anecdotally, living donors I have talked to have told me that the quality of care they received from their care coordinator did not impact their decision of whether to donate or not, but the quality of care did greatly impact their impression of the experience and of the hospital.
  • Transplant care coordinators receive widely varying levels of support from their institutions.  Some have large budgets, frequent training opportunities, substantial help and resources to do their jobs, and strong support from their superiors.  Others are operating on minimal budgets, fighting constantly for attention to their concerns for their living donors, and creating what they can from scratch to educate and support patients.
  • The relevance of continuing education for living donor care coordinators is sometimes not optimal.  While care coordinators are required to maintain levels of continuing education credits, they often earn those credits by attending programs intended more for transplant surgeons or liver or kidney disease specialists. 
  • Transplant care coordinators from one hospital don’t usually talk to or network with their counterparts in other hospitals.  This strikes me as a wonderful opportunity for advancement.

There is one thing I have found in common with every single care coordinator I have met, however.  They geniunely care.  They are as bowled over by the generosity, courage and beauty of living donors as our family and friends are.  They are as in awe of the miracle of living transplantation as we all are.  They want to do good jobs.

We can help them, as patients, by telling them what we think and by talking to each other about what worked well and what didn’t, so that those who go after us are better informed about what to expect and what to ask for from their coordinators.  If there are any donors reading this who have thoughts to share, specific or general, I would love to hear and collect them, either through comments below or via a personal email if you’d prefer.   At the Greatest Gift Foundation, we will work as much as possible to promote the spread of best practices throughout the country and to build a networking channel and productive continuing education options for care coordinators.  I’d love to know what else you think we can do.

 

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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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