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Archive for June, 2008

Score one for my home state boys!  Justin Ruddy, the assistant men’s basketball coach of Simpson College in Pella, is in need of a kidney transplant, and Iowa’s collegiate sports community is responding in spades.  This past weekend his friends hosted a charity basketball game in Ruddy’s home town of Fort Dodge, with the ticket proceeds helping to pay Justin’s medical bills for dialysis and the transplant.  The players and coaches were past basketball stars from that one Big Ten university that shall remain unnamed, as well as KU, Northern Iowa, and (of course!) Iowa State.  

But even better than the money was Justin’s own spin on the event:  He organized a booth out front at the game to sign up organ donors.  Not living ones for him.  Just normal every-day organ donors to help other people when and if the time comes.  This quote came from the story in Saturday’s Des Moines Register

“I’m trying to add at least 50 names to the donor list,” says Ruddy, 28…. “So if there are people who are walking up to my event who are not (on the list), I want 50 of them to walk out as organ donors.”

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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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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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My friends showed up with some remarkable gifts in the couple of weeks leading up to my liver donation to my brother. Among the most memorable: My close college girlfriends Jennifer and Colleen brought me a homemade batch of liver-shaped sugar cookies, frosted pink with sprinkles, and a beautiful bracelet Jen made with that spelled out “GREATEST GIFT.”  Peter, exercising his resourcefulness, copied the cheeky cartoon header image I’d been using on my Chopped Liver blog onto a T-shirt, along with the URL and the phrase, “I donated half my liver and all I got was this stupid blog.”  Brilliant. 

Fun gifts like those came immediately to mind when I landed on the Website called “I heart guts,” at http://iheartguts.com.  This site sells cute little plush organs — kidneys, livers, lungs, hearts, brains, even gallbladders.  Here’s what the adorable kidney looks like, yours for $16.  

The site also peddles some of the best T-shirts (including cute little babie onesies) I’ve ever seen related to organs. (Not that I’ve seen a lot, mind you.)  This is my favorite, which I think I have to have:

Buyers please beware — I haven’t ordered anything from this site and don’t know anything about its origins.  It appears to be on the up and up, but that’s all I know. 

My thanks go to my ever-creative and huge-hearted friend Reed who found the “Lover Not a Fighter” T-shirt image for her own blog, which led me to look for its source and therefore to this fun site.

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Turns out that video I sent you to on YouTube below is not the same one I ended up sending in to ABC News for the “Talk Back” feature of their Hopkins documentary series.  I sent the wrong file, but it’s just as well… the one I sent is fine too I suppose.

They have it running on the feature roll tonight — what a kick!  That’s me in the second row of mini-screens, far left.  That’s the MN Landscape Arboretum behind me, and Mindy holding the camera.  124 views so far, yea!

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Last week I posted about ABC News’ call for short video testimonials on organ donation, related to their upcoming Hopkins documentary series that debuts this week.  After shooting no fewer than about 7,250 videos of myself, trying to get the message right, keep it short, hide my double chin, etc., I finally landed on a video that I felt good enough to upload — and as soon as the video is “reviewed by the editors,” it will be posted on ABC’s Talk Back site.  I may do others, now that I see how easy it is to upload.  You should make one too!

Here’s my video on YouTube — you can also go to the ABC News Talk Back home page and use the search box for “Hopkins” or “organ donation” to view what other people are saying, or check out the Hopkins miniseries documentary page at http://hopkins.abcnews.com/ and click on the “Talk Back” box toward the right-hand side of the home page.

CLICK HERE TO SEE MY VIDEO ON YOUTUBE.

My sincere thanks to Mindy, Steve, and Cathy for being my videographers. If you notice I look like I’m cracking up at the beginning of this video, it’s because Steve and Cathy are marvelous people.

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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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