National Donor Memorial Website Launched

UNOS (United Network or Organ Sharing) has launched a new National Donor Memorial site. This new site gives donor families and others the opportunity to see the National Donor Memorial located in Richmond Virgina. The purpose of the Memorial is to honor those that have given the gift of life through donation. It is also through the experience of the memorial and the educational opportunities to hopefully one day end the shortage of organs for transplant that is a reality today.

The website provides photos and a virtual tour of the actual memorial site, but what could be seen as the most powerful is the tributes. Donor Families are able to submit a tribute in honor of their loved one which includes a photo. In the spirit of honoring the donors it is the first thing you see on the website and the tribute changes every time you visit the website. When I visited the website I found it very easy to be pulled in by the stories of those that gave the gift of life through donation. You end up wanting to read just one more before you go onto something else. Check out this new resource to learn more about donation and those that make it possible through giving generously of themselves.  

Take care,

John LeMay

Dinner in Sioux Falls, anyone?

Donor mom Charlene Myers invites you to their monthly get-together!

 

Generally a get-together is planned for the 1^st Thursday of the month for anyone associated with donation and transplants.  We changed the date for this month of January.  We are meeting at Champs on Western Avenue in Sioux Falls, 5:30, January 7^th.  If anyone is interested in attending our get-together, please call 605-373-6584 or email curlymom@sio.midco.net by noon Jan 7^th so Charlene can make reservations.

Angie

Angie

 

Angie, from Hudson WI, had the world by the tail. She was young, talented, pretty and recently married. The one thing she didn’t have was a donated heart. Angie died January 15^th, 2006 before she got the transplant that she needed. Her mom, Dawn Franzmeier of Osceola has made it her mission to educate as many people as possible about organ and tissue donation. In November, Dawn spoke at Hudson High School.

 

 

 

A few weeks after this presentation, Dawn received the following letter of thanks. It was affirmation for her that at least one young person really heard her message that day and it helps energize her to continue her fight on behalf of others like Angie.

Dear Dawn,

I wanted to say your presentation was very touching and definitely changed my mind about being an organ donor. I always wanted to be an organ donor but I wasn’t 100% sure about it. Some of the things just freaked me out, like having my body parts in someone else’s body. But after you came and talked to us about your daughter and her experience, I was very touched and realized what a difference can make for one person if one person donates just the smallest organ. I had an aunt that died of liver cancer and she was waiting on the list. She had three daughters and a husband. After about a little under a year of being diagnosed, she passed away. I just wanted to say thanks for coming in and sharing your story with us.

T. D. (Driver’s ed. student)

The Blessings of Transplant by Marie Anderson

Marie Anderson stood out! She glimmered. Maybe it was just something innate. Her husband Wayne said so. She was always special; that’s why he married her. But after her lung transplant, she was even more radiant. She knew something that many of us have forgotten. She knew what a gift every breath and every day was.

Shortly after she died almost 8 years after her transplant, one of our staff rediscovered the following words that Marie had written about the blessings of transplant. Thank you Marie for reminding all of us.

Merry Christmas and Happy New Year everyone!

The blessings of transplant —

—For years, the field and the woods was a view from the dining room table. I now can walk to the woods, pick a rock or a stick. Memories of finding the fox’s hollow, a sleeping deer.

—Just 10 days after transplant, the first time in so many years that I could talk, walk and breath all at the same time.

—Taking a shower by myself.  Had a home health aid giving me showers before transplant. Do you know how difficult it is to have someone come into your house, a woman you have never met before and that person giving you a shower. It also didn’t matter if I was on 3 liters of oxygen or 5 liters of oxygen. Could not breath.

—No more weekly infusion therapies.

—When you can’t breath, nothing else matters.

—Being able to walk up the stairs of my house which I hadn’t been able to do for over 2 years.

—Singing. Can still remember singing Christmas carols the first Christmas after transplant.

—Making my husband’s brown bag lunch the evening after being discharged from the hospital. No big task but was big deal for me.

—There were so many bumps in the road for the first 10 months. I became very angry and then remembered; I prayed for then transplant and being able to take a deep breath once again. I could breath and also had the strength to endure the major medical problems post transplant.

—Keep your dreams alive. I always stated, “after transplant I would purchase a new yellow “beetle” Volkswagen”.  After transplant, living on disability income we were not able to buy such a car. On the second anniversary of being listed for transplant, I rented a “beetle” car for a weekend. How much better could it be —my daughter driving the car on 694, I’m in the passenger seat eating a fresh bagel smear and sipping my favorite coffee. Life is good!!!

—The next year, third anniversary of being listed for transplant, once again rented a car. This time it was a PT Cruiser. How sweet it was! Could not afford the purchase of a car but weekend rental was in the budget (I saved my pennies for this excursion).

—A family vacation in 1999. The first vacation we had taken for 12 years. Walking the shores of Lake Superior with my family. Each of us picking rocks, looking out into the horizon, seeing the ships off in the distance. A family photo from the Light House. Playing games, laughing, eating and reflecting on the past 2 years. My family is one of the richest blessings of life.

—Participating in the planning of my daughter’s wedding. Even included in the beginnings of the “stag” party.

—Dancing at my daughter’s wedding. The photographer even captured a picture of Wayne and I dancing. It had been sooooo many years ago.

—Driving a car once again. Was not comfortable at first – those crazy drivers.

—Meeting some of the nicest people in the world through our Lung Support Group.

—Volunteering at LifeSource. Makes me feel part of the working world which I can not return to as per the physicians. Speaking and spreading the news to one and all about the gift of life. Removing the myths through education we volunteers have received through training at LifeSource.  Wonderful people work here.

—Support. The first anniversary of transplant.  Inviting our family and friends to dinner at a restaurant to celebrate this gift of life. Telling our story. They, giving gifts of money for Second Chance for Life in honor of this celebration ($3,500).

—Grandchildren. New life to love. New feet to guide. What more could anyone ask for.

—The laughter of friends, closeness of family.

—Having the strength to help my daughters and their husbands pack their belongings for moves to different houses.

—Entertaining – resuming card club. We began with this group in 1969 and so desperately wanted to reenter the social world. Dinner, playing cards, prizes. I did it!!!

—Eating. Before transplant it was difficult to consume any portion of food as it would be exhausting. Any amount of food, pressure on your diaphragm, would make it most difficult to breath. Struggling for every breath you take.

—Going with my family to “Mama Mia”. Standing during the encore, singing and crying “I’m Having the Time of My Life”. Truly I was.

—Walking side by side with others needing transplant so they never have to walk this journey alone.

—Faith, fight, family and friends have sustained me each and every day of life pre and post transplant.

—Each and every morning, I give thanks for my donor.

I know not the dignity of my donor’s life, nor the tragedy of their death but I do know I received the greatest gift of all, the gift of life.

 

Yesterday is history-

            Tomorrow a mystery-

                        Today is a gift!!!

 

They told me I would never live to see Christmas. Transplantation works. Every day is a gift. Every day is Christmas! Life is good!

 

Marie Anderson

01/12/04

Plane Talk

This morning, as I was traveling back to the Twin Cities from Rapid City, South Dakota, I had an unusual encounter. 

I was just drifting off to sleep as our early morning flight pushed back from the gate when I heard two people sitting directly behind me introducing themselves.  A woman was explaining that she was on her way back to Jacksonville, Florida after attending her brother’s funeral.  He had passed away after a struggle with polycystic kidney disease, and she was sharing that she and almost all of her siblings had inherited the disease from their parents.

To my surprise, the gentleman she was seated with proceeded to share that he knew about PKD through his own struggles with kidney disease and had just four years ago received a transplant that freed him from dialysis.

What are the odds?

I found it so remarkable that I was compelled to put aside my desire for one last nap before returning home to my active nine month-old and turn around to introduce myself. 

We chatted for the remainder of our short trip back to the Cities and I learned that Ed, who lives in New Jersey and was transplanted in Florida, had lived tethered to a dialysis machine for four years before receiving his transplant.  He has a genetic disorder called IgA, but hadn’t learned about his disease until the time of his diagnosis much later in life.

All Ed knows about his donor is that he or she was a teenager.  He expressed great thanks to the people who give the gift of life through donation and for those of us who spend our days educating the public about the life-saving decision each of us can make.  In sharing his story he was hoping to convince his seatmate to consider being listed for a transplant if her disease continues to worsen.

One thing he shared struck me in particular.  In talking about his journey he said “When you’re on dialysis you’re living to die; when you receive your transplant you’re dying to live.” 

Ed talked about all the people he saw at his dialysis clinic who never received the transplant they needed and how unfortunate it was that more people aren’t registered as donors.  In fact, these two individuals suggested we get president-elect Obama to put his support behind donation and ask Americans to register. 

Anyone have a connection to our new commander-in-chief?

Dinner, anyone?

Donor mom Charlene Myers wants to have dinner with you!

Anyone with an experience around organ, tissue and eye donation is invited to join Charlene and others for dinner this Thursday, November 6th at the Cherry Creek Grill in Sioux Falls, South Dakota.

Cherry Creek Grill

3104 E 26th St

Sioux Falls SD

5:30 p.m.

Please let Charlene know if you plan on attending.  You can reach Charlene at 605-373-6584 or cmyers@theevco.com.

The List

This morning I was thinking about “The List.”  It’s coming up on state fair time (more on that soon) and for a second time our t-shirts will read “Is your name on the list?” with Minnesota’s online registry website printed on the back.  The idea is to begin a conversation with fairgoers who may be prompted by reading our shirts to ask “what’s the list?”  In this case, we’re talking about the list of registered organ and tissue donors.  Last year it worked as a great segue to ask if people are interested in registering, which they can do for free at our booth.  In 2007 we registered over 1,100 Minnesotans during the twelve days of the fair. 

The other list, of course, is the national waiting list of people waiting for a life-saving organ transplant.  This list is maintained by the United Network for Organ Sharing (UNOS) and holds the names of everyone in the United States who is listed for transplant. 

We built an advertising and public education campaign around the waiting list, which we used to launch Minnesota’s online donor registry in 2006.  It featured the stories of Warren, Bob and Alexa – all of whom are real people from our region who have been touched by donation and transplantation. Since they (or in Alexa’s case, her parents) can share their stories much better than I can, I’m going to let them do the talking.

Here’s Warren’s story:

And Bob’s story:

I’m happy to share that Bob DID receive his heart transplant and is doing wonderfully.

Finally, here’s Alexa’s story:

Alexa’s story speaks to all of us in the donation and transplant community because it is the unbelievable tragedy and unfortunate reality for more than 6,000 people each year.  In 2004, the year Alexa died, 6,918 other people who were waiting for their transplant met the same tragic fate.  We do what we do so that fewer people will die on the transplant waiting list and fewer families will be missing their Alexa.

Donation is a generous, life-saving gift.  You can help save the lives of people like Alexa by registering to be a donor today.