Dave Costello from Burnsville is waiting for a heart transplant. Susan Schroer from Brainerd lost her brother Mike in 2008. These two LifeSource volunteers spoke to about 50 young people at a Pequot Lakes Driver’s education class in June.
Here’s what some of those students had to say:
Dave and Susan,
Thanks a lot for coming in and talking about organ donation. I learned a lot about the different organs and how many people can be saved from just one person. I will probably be an organ donor now that I learned how much one person can really do. Thanks. Anonymous
Dear Dave and Susan,
Thank you for coming in and telling us your stories. They were very touching and I hope you will continue this program. I talked to my parents and I think I am going to be an organ donor. I like how you explained how we “recycle our organs.” That was cool. Thank you so much for taking time out of your schedule to come and help me with my decisions. Erika
Thank you for explaining more about organ donation. I really had no idea how important it really was. I agreee with you. Why wouldn’t you check the boxa/ I know that i am going to, now. Jamie
Ok. I cherry picked these thank you letters but honestly the majority of writers where strongly supportive of donation, stating they would definately register as donors.
Thanks Dave and Susan for talking to these young people and for sharing your letters with the rest of us.
Last weekend I attended a wedding with my family. At the reception we sat with another family who had small kids. As we started to talk with with the required introductions – such as name, how do you know the couple and so on - we talked about what we do. I shared that I work for LifeSource, at which point Tabitha spoke up and told me that she was a donor sister and that her mother had received a lot of support from our organization.
Tabitha’s sister died more than 15 years ago and she spoke very passionately and powerfully about the support they received and the relationships that were created because of the gift of life. She spoke about meeting the parents of the recipients and how important it was to her mother to meet the mother of one of her sister’s recipients. She shared that they both had anxiety about the meeting, such as the recipient’s feeling of guilt of having a surviving child and so on.
As Tabitha continued to talk she gave example after example about how donation had changed her family’s life. I could see in her face how much it had impacted her and the excitement about talking to someone who understood the process and not having to explain it. It seemed that she may not have told these stories for a while and telling them to me was encouraging both of us. She talked about her family becoming family friends with the recipients and their families, even flying to visit one family by herself when she was 16. She talked about keeping in contact with the donation coordinators and how that had impacted them.
Connections that are created by the generous giving of the gift of life are powerful, both for the donor’s family and the recipient’s. Each side can gain healing from being in a relationship with the other, and families are connecting more often. Around 10% of LifeSource donor families have direct contact with the recipients of their loved ones gifts; not too long ago it was rare and unheard of. As we continue to talk with donor families, recipients and transplant professionals we can increase those numbers and there will be more stories shared over a meals at at receptions talking about the power of giving the gift of life and the connections it creates.
Did Mickey Mantle, center fielder for the Yankees, get preferential treatment when he received a liver transplant in 1995? What about more recent controversies from Natalie Cole’s kidney transplant to Steve Jobs’ liver transplant? The short answer for our volunteers remains: Donation and transplantation save lives and when someone is waiting on that UNOS (United Network of Organ Sharing) waiting list for a transplant, it doesn’t matter if you’re rich and famous. The sickest and the best match will get the next available organ. But it does get complicated.
Mickey Mantle received no preferential treatment. He got a liver transplant while waiting on the list because he was the sickest and the best match. One good source of info is this web site at stason.org
Natalie Cole was listed on the UNOS waiting list for a kidney transplant. The family of a deceased fan offered their loved one’s kidney to the singer in May 2009. That is called directed donation and does not directly involve the list. Many question the ethics but the donor family had that right. A good source of info is this site at cnn.com
Steve Jobs, CEO of Apple Computers, recently received a liver transplant. Jobs’ controversy deals with his listing at multiple transplant centers. He received his transplant in Tennessee where the waiting list is shorter, not in California where he lives. He was on the UNOS list. He was the sickest and best match. The question is whether he had an unfair advantage being able to afford to fly to another state. More info at bloomberg.com
How should volunteers answer these and other questions?
In most cases, you won’t be asked questions about Mickey, Natalie or Steve. If you want to, you can say, “I don’t know about that, but let me tell you what I do know.” Each of you can say with authority exactly what your experience was. Your stories can emphasize:
Top notch medical care
Dignity and respect for your loved one
A sense of pride that your loved one has helped so many people
Always gratitude for our donor’s and donor families. Without their decision to donate, transplantation could not happen.
In talking with families and listening to their stories, a consistent theme that comes up is how critical it is that they receive support in their grief journey. It may come from immediate family members, a neighbor, coworkers or their faith or community group. More and more, people are also receiving support online, allowing them to connect with others anytime day or night. They can learn about other people’s stories and read things at their own speed.
Because of my job, I have access that to a list serve (an email group) that is set up by one of our tissue partners , LifeNet, for donor family members. It is predominately self-moderated and the posts that I have seen are amazing. They range from intensely emotional cries of pain and grief to the more quiet remembrances of the birth or death date of their loved one. They share the insensitivities of people around them, and even their experiences working with local officials to change laws or regulations in some cases. The consistent theme is that people can come as they are - there are no pretenses of where they are supposed to be in their grief journey or what they are supposed to be feeling.
Using the internet in this way enhances our ability to provide support and resources to the many families that we serve. If you are a donor family member and are interested in participating in the online forum I mentioned above, I can help you sign up – just call or email me. You can also visit our website to find more resources to help you in your grief journey. I can also recommend the following sites:
Finding the right support is very personal and you may have to try many different things to find the right one. Using the internet is just one more way you can find support as you grieve and remember your loved one.
I came accross this Valentine’s Day story while looking at the news this evening and thought I would share it with you. It was broadcast on the Twin Cities NBC affiliate, KARE-11.
This year, Valentine’s Day was preceded by Friday the 13th - a seemingly odd occurance that falls in place every six years, if my calculation is correct. A day of superstitiousness, bad luck and horror movies, followed by a day of love, friendship and all things warm and fuzzy.
It occurred to me that in some ways, this is the day by day experience of people in grief. Living without your loved one may sometimes feel like a horror movie – you hope that you’ll wake up as if it were all a dream and that reality, as you knew it, would exist as it were upon your waking. Creating a new reality without your loved one is an almost impossible chore, and one nobody wants to undertake.
Yet Valentine’s Day may also exist throughout the year. Friends and family reaching out, offering a hug, a welcome distraction or a warm memory of your loved one. Transplant recipients who are able to give and receive the hugs and kisses of their spouses, kids and grandkids because of the unending generosity of a stranger – of your loved one. It is an incredible gift.
Wishing you Valentine’s Day throughout the year and sending a virutal hug…
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 15th, 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.
Today is Thanksgiving, a day we traditionally set aside to focus on the people and blessings for which we are grateful. As you gather around your thanksgiving table today, hopefully surrounded by friends and family, please take a moment to keep in your thoughts those who have been touched by donation or transplantation.
At LifeSource, we give thanks for the generosity of donors and their families who so selflessly give the gift of life to grateful recipients and provide hope to people waiting for their second chance at life. We hope your holiday is filled with the comforting memories of your loved one.
We give thanks for transplant recipients who spend their time positively impacting their communities, encouraging others to be healthy and register as donors. As many of you have shared, every day is Thanksgiving for you.
And we give thanks for transplant candidates and their families who are still waiting for their gift of life, showing their courage and hope for a better tomorrow. Our mission is driven by your stories and a commitment to be the bridge between you and the generous donors who make donation possible.
In addition to being a time of reflection and celebration, the holidays are a great time to have a conversation with your family. As you gather around your table today, take a few moments and ask your loved ones about their thoughts on organ and tissue donation. Share your story and your decision. Encourage others to register to be an organ and tissue donor if they support donation – to give thanks, and to give life.
Wishing you peace, strength and love, today and always.
With the election less than one week away, news coverage is almost constantly focused on politics. I’m a big believer in participating in our democratic process, so I hope the coverage is helping you decide who to vote for and that you will vote for your candidate on Tuesday.
One of the side effects of all this political coverage is that we aren’t seeing as many stories about donation and transplantation in the US. It seems appropriate, then, to take a look at where the presidential candidates stand on organ and tissue donation.
After some sleuthing on the internet, all I can report is that I haven’t been able to find any substantial references to donation made by either John McCain or Barack Obama about the issue. I did find a number of articles from recent days that mention that Obama’s ailing grandmother received a cornea transplant so she could watch him on television.
This life-saving gifts of organ and tissue donation are not a partisan issue. I hope the next president of the United States, whoever he is, will take this issue on and help us continue to further the mission of donation.
I’ll leave you today with a link to a blog post written by our good friend Bob during the primary season this year inviting his readers to follow his lead and send a letter to the presidential hopefuls asking them to address this important issue. Bob received a heart transplant earlier this year and, in the past, has helped us refine our public speaking skills.
Even though the election season is coming to a close, I hope these candidates for change, as they all claim to be, will help us change the world by encouraging people to save lives through donation - whether or not they are elected to the highest office in the country.
Thursday afternoon I was privileged to speak with Kim, a donor mom from South Dakota who shared memories of her son, Kevin. I was interviewing Kim so we can feature Kevin’s story on our website.
Friday I received the following e-mail from Kim (shared with her permission, of course):
Thank you for listening while I shared my story yesterday. It is such a gift that you and the others at LifeSource give to families. I am sure that you have heard this before, but one of the realities that I, and my family, have faced is experiencing isolation from friends and family who are uncomfortable about us speaking about Kevin.
Death is not very accepted in our “evolved” North American culture. We are the poster children for their worst nightmare. You provided a safe environment for me to speak about Kevin and the more I can do that the more comfortable I will become with sharing his story and the message of donation. Kevin would expect nothing less of me than to make the biggest impact I can for LifeSource. (He also loved publicity, so I know he is sucking this up!)
I am not an expert on anyone’s grief but my own, and even that is stubborn and unyielding at times nearly ten years after the death of my father. I do know that more of what we need, not only as people in grief but as a society, is to be gentle with one another and simply listen.
Kim’s note was a reminder to me that so often we’re busy thinking of what to say next or advice we want to give that we don’t simply ask “how are you doing?” and then keep quiet and sincerely listen while the other person shares. Imagine the freedom that comes with lending your ear without the expectation of having to have the answer.
We all want to be listened to when we talk about our lives, our family, our work and our passions. That reality doesn’t change for someone simply because a person that they love is no longer living. The chance to share a story, a memory or a simply a loved one’s name is a precious opportunity. If you know someone who has experienced the death of a loved one and are wondering “what can I do?,” the answer is, simply, to listen.
I often think of milestones in terms of what it says about where I’m going and what I’ve done along the way. For example, I’m going to be 30 next year. Surprisingly, I’m right where I thought I’d be for this marker that officially sets my adulthood in stone. I’m married to an amazing man, we have a beautiful little boy and I have a job I love where I get to meet people with powerful, emotional stories and help them share their memories, their sadness, and their joy.
Not all milestones are ones to be celebrated. Today is the first day I looked at the UNOS website and saw the milestone we’ve all been dreading – the number of people waiting for a life-saving organ transplant has surpassed 100,000. The list is fluid and, to quote a colleague, “moves up and down like the Dow” (thanks, Phil) yet this is a somber reminder that despite our best efforts the number of people waiting for a transplant continues to exceed the number of organs available.
So what can we do?
More. Of everything.
More people need to register to be organ and tissue donors. More of us need to get over our shyness of talking about end of life issues because we all, inevitably, will face the end. More of us need to decide that today is the day we’re taking action – to talk to people, to share our story, to connect, to ask ‘why?’ or ‘why not?’
More of us need to think about the milestones we are anticipating in our own lives – a birthday, anniversary, birth, graduation or wedding – and put ourselves in the shoes of the 100,000 men, women and children for whom the greatest milestone is one more tomorrow.
It’s all in our hands. It’s in your hands. Because the only thing that will stem the tide of an ever-growing pool of people waiting for their life to be saved is you. Please, join the nearly 70 million Americans who have already documented their donation decision and register today.
