Meet Kayla

I had the pleasure of meeting Kayla a few months ago – a gracious young woman who received the gift of tissue donation to repair her torn ACL.  I think you should have the pleasure of meeting her as well. 

Supporting the Bridge

Our mission statement is that LifeSource pledges to be the bridge between the loss of life and the gift of life through organ and tissue donation.  This image of the bridge is one we use quite frequently.  As you know, in order for there a bridge to be functional there must be many supports.  The bridge between donation and transplantation has many of these supports, one important one being transplant recipients.   I do not want to dismiss the importance of the gift by the donors and their families – they are the ones who begin the bridge.  I’m focusing on recipients right now because I have known many who have also been a strong part of the bridge, either by raising awareness through living their lives as they wait for transplant or sharing the message of donation as a volunteer after they’ve received their gift of life.  

Part of my job includes facilitating correspondence between donor family members and recipients.  A few weeks ago I received a gift sent by a recipient to the family of her donor. This gift was an exquisitely handcrafted quilt and pillowcases. As I took it out of the package it just kept coming and coming and as I looked at it I could see the love and appreciation that was poured into it. The fine stitching that left no visible seams, the vision to see it as one large work of art and the desire to give back to someone that had given so much. That gift was a support to the donor family.  I talked with a family member later and she appreciated the beauty, time and effort the recipient poured into it. It was also a support to the staff here at LifeSource, who could see the beauty and time and effort that it took to create such a masterpiece. Through seeing it they were also encouraged in the work they do, to see the circle be completed from donor and family to recipient and then recipient to donor family.  Together we all support the bridge that facilitates giving the gift of life through organ and tissue donation and transplantation.

The quilt given by the recipient to the donor family

This is a close up of the detail photographed at the actual size of the quilt.

Peace,

John LeMay

Tragedy and Joy

There are many stories that cross my desk as I work with the families of our donors. Stories that start with a tragedy and while that tragedy does not go away, donation can bring some positive out of the ruins. This is one of those stories, it the meeting of one donor family and the recipient of their son/brother’s heart. Brian died as the result of a work related incident on November 1, 2007.  They first heard from Dick, (the heart recipient) 2 months after Brian died and he received his transplant. After many letters both parties decided to share their contact information with each other. This is where Doug and Carol pick up the story:

We shared each others’ personal information on a recent Tuesday morning.  By that afternoon we received a phone call from Dick that lasted almost an hour.  E-mails were exchanged that evening with Dick asking if he could meet us that upcoming weekend as he was flying to our area on business and could stop on the way.  Schedules were set up, plane tickets were bought, and in less than 4 days from the first time we spoke on the phone, we were face to face with two of the most wonderful people we’ve ever met – Dick and his wife, Holly.  It was a priceless 24 hours that we spent together with them, filled with some tears, but mostly good, warm conversation and laughter.  It was an uplifting experience for us as we were able to see just exactly how wonderful Brian’s gift was for them and their family.  They also gave us a gift in giving us the opportunity to talk incessantly about Brian as they wanted to know him. 

As many grieving experts point out, one of the most endearing things for parents who have lost a child, or for someone who has lost a sibling, is to know that their loved one will not be forgotten.  Without any doubt, our Brian will forever be remembered by one of the most wonderful, loving families we have ever known.  We cannot begin to express how much joy and peace that gives us after having experienced the terrible event that claimed our son.  As our daughter, Katie, so aptly put it to Dick and Holly’s youngest daughter, meeting Dick and Holly did not help her in closing the door on her brother’s death, but it has opened a door on celebrating Brian’s life.

 

 

(L to R) Katie, Doug and Carol meeting their son/brother's heart recipient Dick and his wife, Holly

This is a powerful experience that has transformed both families, as I talked with Doug later there was much joy in his voice. The pain of Brian’s death will be a part of their lives forever, but being able to meet one of the recipients of Brian and their generosity gives them hope and comfort. It has also solidified their belief that in their darkest hour giving the gift of life was the right thing to do. 

Peace, 

John LeMay      

    

 

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.

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?

A gift that gave back

This morning I want to direct you to a lovely article published earlier in the week in the Minneapolis Star Tribune titled “A gift that gave back.”  It’s a beautiful story about the generosity of living donor who found herself the recipient of her community’s generosity.  Enjoy!

Be a Hero, Become a Donor

Yesterday afternoon I had the pleasure of meeting Gina Cousineau and Kelly Lawson.  Their story is quite remarkable and truly illustrates that donation is donation, no matter if you’re saving lives through organ, tissue or eye donation, bone marrow or blood donation.   

Gina and Kelly met last year as two moms fighting for their son’s lives.  Gina and her daughter, Mary, came to Minnesota from California with the hope that a bone marrow transplant at the University of Minnesota would save their 9 year-old son and brother, Evan.  Only a few weeks earlier, Evan was diagnosed with a rare genetic disease called ALD that threatened to kill him in a matter of months.  Although there is no cure for ALD, bone marrow transplants offer HOPE to patients and their families facing this grave diagnosis.

Kelly Lawson was also at the University of Minnesota hoping for a miracle for her 3 year-old son, Dominik, who needed a life-saving kidney transplant.  Three weeks after she donated her own kidney to him, Dominik went into rejection.  The news they were faced with was numbing – Dominik would only be a match for about 3% of the population and may have to wait 8-9 years on the national transplant waiting list for a kidney. 

I’ll let you watch the rest of the story unfold as told by Kelly, Gina and Mary, who were on Twin Cities Live this afternoon.  Here’s Kelly and Dominick’s story, and here’s the Cousineau’s story.

In addition to the legacy Evan leaves in Mary and Dominick’s inspirational story, Gina has created the Be A Hero, Become A Donor foundation in his memory.  The mission of the foundation – Gina’s mission – is to inspire all Americans to register to be marrow, blood, organ, tissue and eye donors.  

As Gina says “you can live, and then give!”  I hope you enjoy the montage below as much as I did when I watched it yesterday, fighting back tears.  Please – register to be an organ, tissue and eye donor, join the national bone marrow registry, and give blood.  Donate LIFE!      

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.