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.
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.
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.
You are invited to join Charlene Myers and friends in Sioux Falls tomorrow night (July 2nd) for dinner at the Rollin’ Pin. All people with a connection to donation or transplantation are welcome.
July 2nd, 5:30 pm
The Rollin’ Pin
3015 W Russell Street
Sioux Falls, SD
Please let Charlene know if you are planning to attend! You can reach her at curlymom@sio.midco.net.
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.
On Saturday, May 23 I had the pleasure of attending the EMS Recognition Day at the Minnesota Twins. This event is sponsored by the National Marrow Donor Program – Be the Match. This is a very nice event which takes place in the parking lot just before the game. The goal is to recognize the emergency services professionals for their service to our community.
Ross Chavez is pictured with Secretary of State Mark Ritchie
The highlight of the event from was hearing Ross Chavez speak. Ross works in LifeSource tissue donation and is an EMT with Hennepin County. Ross spoke about the importance of the work of the emergency services professionals in helping people and saving lives. He then shared a very personal story of a time when he was unable to save a patient and then that patient went on to help others through tissue donation. Ross spoke with great compassion and dedication to his work in both areas of his profession. As I listened to Ross I thought first about how fortunate we are to have someone like Ross working at LifeSource. I was then struck by how interconnected all of our work is – National Marrow Donor Program, Emergency Medical Technicians, and LifeSource. Each organization has a specific and important mission and together we truly do contribute to a stronger and healthier community.
After the event we all went to the Twins Game where the EMS Hero of the Year threw out the first pitch. It was a great evening which was made all the sweeter when the Twins were triumphant over the Milwaukee Brewers.
This morning I was going through the mail at my desk when I opened a letter from a donor mom. Enclosed was a program from a ceremony at which the donor’s family awarded the first of an annual scholarship in honor of their son. As I looked through the newspaper clippings, the program, and read a copy of the speech, I was very impressed with their commitment to continuing the legacy of their son and their family. This family is able to share the positive traits of their son with a much larger group on an annual basis as they give scholarships to high school students who will, hopefully, go on to pursue their dreams.
Many times we talk about the gift of life given at the time of donation – the gift of organs or tissues that saves lives of those waiting for a transplant And this is a critical message to share. Over 100,000 people are waiting for a life saving transplant and that is just organ alone. Many more people will require a tissue transplant at some point in their lives.
To me, though, the amazing thing about our donor families is that they do not stop with the donation. They do not say, “my family has given enough.” Our donor families find ways to continue to give, to further the legacy of the beloved person that has died. This is done through a variety of ways: establishing scholarships, softball touranments, telling their story to high school students in driver’s ed. These are people that understand what it means to give – to give life, to give hope, to give possibilities. I am constantly encouraged by knowing, caring for, and serving this group as they try to do the same for their community and continue the legacy of their loved one.
The following post is courtesy of Mark Johnson, one of our hospital liaisons, and is a testament to the generosity of donors and the power of remembrance.
On Memorial Day a friend and I were checking in for a round of golf and one of the guys behind the counter asked me what my relationship was to LifeSource. After explaining my role with the organization I asked him if he was a donor family member and he mentioned that his daughter had died in 1990 and was able to donate her heart and both kidneys. He asked that I stop by after my round so we could talk a little longer.
During our conversation later in the morning he thanked me for what LifeSource does and told me that losing his daughter was the cruelest blow he and his wife have ever experienced. He also mentioned that when they think about their daughter they rarely think about how she died but more frequently remember that she was able to help other people. He said he doesn’t recall a lot of details about the hospitalization but clearly remembers the conversation about donation, and that he and his wife never hesitated to say yes knowing that their daughter would be an answer to another family’s prayer.
19 years later and he was obviously still deeply impacted by their decision to donate. Talking with this father I realized that the donor families we have worked with in the past, whether it was last week or 19 years ago, are affected forever by their interactions with LifeSource.
To meet a donor Dad from so many years ago and to have another chance to honor their decision and their daughter’s gift was a wonderful way to celebrate Memorial Day!
The monthly gathering of donor families and recipients in Sioux Falls will be at the Rollin’ Pin on Thursday, June 4th. Please rsvp to Charlene Myers by June 3rd if you plan to attend (curlymom@sio.midco.net).
Directions:
On I-29, take exit 81
Address: 3015 W Russell (West of SF Convention Center)
For the past four months we’ve been bringing you information about joining a group of donor families and transplant recipients for dinner in Sioux Falls on the first Thursday of each month. This group has grown from just a few individuals to close to two dozen people interested in getting together. What a great opportunity to connect with others who share a similar interest!
A big thank you to donor moms Charlene Myers, Lindy Smart and Elaine Sorenson for organizing these valuable get togethers. If you’d like to meet them this month, please find your way to Royal Fork Buffet on Thursday evening (details below).
For the past four months we’ve been bringing you information about joining a group of donor families and transplant recipients for dinner in Sioux Falls on the first Thursday of each month. This group has grown from just a few individuals to close to two dozen people interested in getting together. What a great opportunity to connect with others who share a similar interest!
