Living Proof Organ Donation Saves Lives

Living Proof Organ Donation Saves Lives
By Lisa McAllister

Athena Shry is 20 years old. She is a junior at York College of PA, majoring in marketing and minoring in environmental sustainable policy. Athena is a member of the phi mu ΦΜ sorority and loves participating in the numerous philanthropic events the sorority supports.  Her dream job: Anything to do with Costa Rica. Athena, to the outside world, is a typical 20 year old. However, Athena is celebrating her 20^th anniversary as a heart recipient and that is truly exciting.

Athena, her brother Mike and mother Cathy posing before Mike’s prom

Athena was born with a congenital heart disease called pulmonary atresia. Pulmonary atresia is a disease in which the pulmonary valve does not develop; therefore, blood cannot pass from the heart to the lungs for oxygen.

At just one day old, Athena underwent two separate cardiac catheterization procedures. At two days old, she had open heart surgery and received a shunt to function in place of the valve. Unfortunately, during this surgery it was discovered there were several other problems with her heart. Ultimately it was determined Athena would need a heart transplant to survive and was placed on the transplant list.

Eight days later, Athena was healthy enough to go home from the hospital and wait for a miracle. Nearly seven weeks later, Athena’s parents received the call a donor was found and Athena received her new heart.

Now, looking back 20 years later, Athena and her family are forever grateful. “Not a day goes by where we don’t think about her donor and donor family,” said Cathy Shry, Athena’s mom.

Athena also reflects on the impact this has had on her life. “It’s how my life has always been so I don’t know any better and it feels like mine. But I’m grateful that I’ve been lucky enough to not really be sick.” Like many pediatric transplant recipients, Athena does not have any limitations on her physical activities. In 2008 and 2010, she competed in racquetball, bowling, volleyball and track and field at the Transplant Games of America, an Olympic-style athletic games developed to celebrate the power of organ and tissue donation and transplantation. Although she didn’t play in 2012, she’s thinking about participating in 2014 when the games are played in Texas. “I’ve always wanted to go to Texas. This seems like the perfect opportunity. I’ll probably play volleyball again and maybe track and field.”

Athena at the 2008 Transplant Games of America

Her family has been supportive from day one and many of them traveled to support her participation at the Transplant Games. After her transplant, Athena’s parents wrote two letters to the donor family but never received a response. “At my high school graduation and prom, I thought about trying to reach out again,” Athena says, “but it takes a lot of courage and thought and it just never came to be. How do you thank someone for the life you have? What do you say?”

Right now, Athena is focusing on school and the transition she is making from pediatric care to adult care at The Johns Hopkins. She visits the doctor every three months and has tests done once a year. The transition means she will not have to see the doctor as often, something Athena is looking forward to. “I’m so blessed. Everyone at The Johns Hopkins is so wonderful. I’ve gotten the best care. And I’m lucky to be on little medication, so for now, I’m just hoping to stay on this plan for the rest of my life.”

For more information about organ donation and to sign up, please visit www.takeaminutesavealife.org

It only takes a minute to do something great. Athena will attest to that.

Funeral Home Relationships

Funeral Home Relationships
By Kendra Harris

At The Living Legacy Foundation, we take pride in building strong relationships with all of our partners in the community that help support organ and tissue donation.  We appreciate that without these solid connections the donation process would not be as successful as it is today. Over the years we have created a significant relationship with the funeral home community. This collaboration ensures the families we both share have the opportunity to offer the most important gift, the gift of life.

We work with funeral homes on a regular basis, constantly keeping them informed of our process to help guarantee that donor families are properly cared for. This open form of communication is imperative between The LLF and funeral homes as we share the same goal – to preserve the option of donation and to protect our donor families. One of our partners, Staci Sphar of Evans Funeral Chapel of Parkville says, “Being able to see the dedication The LLF has for the families they service is a reflection of the help we provide to families every day. The support and dedication to families is what drives the directors and staff of Evans Funeral Chapel and Cremation Services to be committed to their work and their families.” This example of support is what helps keep the lines of communication strong and clear and to assure that all donor families are respected.

The Living Legacy Foundation is lucky to work with numerous funeral directors across Maryland and the mutual respect we have obtained proves to be worthwhile.  We are proud to recognize several of our partners that have participated in The LLF events like our Donate Life Family Fun Run, workshops and open houses. Mike Marzullo of Marzullo Funeral Chapel states, “I attended the Donor Ceremony of Remembrance because there are families here that we serve personally.  Marzullo Funeral Chapel wants to show the people that we care, just as The Living Legacy Foundation does.” As our funeral home partners become more and more engaged in The Living Legacy Foundation’s events, the culture of donation will only continue to evolve as our message is shared with others.

The Living Legacy Foundation also works collaboratively with the Maryland State Funeral Directors Association and the Maryland State Board of Morticians to help circulate information on upcoming webinars and continuing education programs.   We are proud to continue fostering relationships with our funeral home partners, and maintain an open dialogue to combat any misconceptions or lack of understanding about the organ and tissue donation process.  It is evident that by working together, funeral directors and the organ procurement organization will truly benefit from this unique relationship. “We support The Living Legacy Foundation of Maryland as they support and help others because we believe that it is important to honor a person who passed and to honor their life.  By being a donor they are giving the gift of life, the ultimate honor. We are proud to be able to stand with The Living Legacy Foundation of Maryland and continue our support” says Sphar.

As we look to the future, The LLF will continue to expand its relationships.  Recently, a Funeral Home Action Committee was developed to help serve as a resource for our staff and the funeral home community. The committee’s goal is to focus our efforts on providing the highest quality of service for our donor families and to help maintain that constant communication.  The workgroup is another way to strengthen our bonds and maintain a beneficial working relationship with our partners. We appreciate all the support we receive from the community and hope to grow by spreading our message of awareness to others.

Kendra Harris and Mike Marzullo

For more information about our funeral home partnership or the Funeral Home Action Committee, please contact Kendra Harris at kharris@thellf.org

4th of July Parade!

For the third year in a row, The LLF’s staff and volunteers walked in Catonsville’s annual 4th of July Parade!

Our team of volunteers was made up of two kidney recipients, a liver recipient and their families. We were also joined by a donor mom walking in honor of her son.

We gave away tons of green beads, fans, mints and t-shirts to the eager parade watchers!

Below are some of the photos we wanted to share. Please let us know if you want to join in the fun in 2014! Or, for other volunteer opportunities, sign up here!

The LLF Van getting dressed up for the parade!

Some of our lovely volunteers!

More volunteers and staff!

For more photos from this event, please visit our Facebook page and look for the 4th of July photo album! Feel free to share your event photos on our page!

Ceremony of Remembrance

Each and every day, The Living Legacy Foundation is humbled by the compassion and generosity of our donors and their families. Without these individuals, we would be unable to fulfill our mission of saving and enhancing lives through organ and tissue donation and transplantation. Though there are no words or gestures that can truly express the depth of our gratitude, one small way we honor donors and their families is through the Ceremony of Remembrance.

On Sunday, June 2, The LLF held its annual Ceremony of Remembrance to celebrate all of our organ and tissue donors and their families. This annual event allows us to come together as a donation community to honor and remember the legacy of life left by our donors and to reflect on this year’s theme “With the Love you Left Behind”. The ceremony was well attended with approximately 800 family members, community members, LLF staff, and volunteers.

We were grateful to have two recipients available to speak. Danette Ragin shared her kidney transplant story with the audience and Allison Sklarew shared her heart transplant story.  Both of their stories were reflective of their gratitude to be given a second chance and all the positive ways their lives have been transformed since they received their transplants.

A new addition this year was a children’s grief workshop held in the kid’s room during the ceremony.  This was led by our colleague, Susan, from the Hospice of the Chesapeake.  Almost 30 children were involved in sharing their emotions and building a “healing heart” for them to take home.

We also received feedback from multiple family members expressing how meaningful the ceremony was to them.  Some families have asked for copies of what our presenters shared and our recipient presentations.  Below, we share those poems and readings.

Untitled
By David Harkins
Adapted for the LLF Ceremony of Remembrance

We can shed tears that they are gone
Or smile because they were here
We can close our eyes and pray they’ll come back
Or open our eyes and see all they left for us
Our hearts can be empty because we can’t see them
Or they can be full of the love we shared
We can turn our backs on tomorrow and live in yesterday
Or be happy for tomorrow because of yesterday
We can remember them and only focus on them being gone
Or cherish their memory and help it live on
We can cry, close our minds, and turn our backs in sorrow
Or we can do what they’d want
Smile, open our eyes, love, live …….. and go on

May You Find Serenity
Author Unknown
Credit provided for excerpts from full text, with other original words by Karen Kennedy

 May you find serenity and tranquility in a world we may not always understand.  May the pain of your loss ultimately give you the strength to keep walking and face new challenges with courage and optimism. Always know there are those whose love will be there for you, even when you feel most alone. May a kind word, a reassuring touch, and a warm smile grace you every day of your life going forward.

May you find the strength to carry on and see the future as one filled with promise and possibility and be guided by the love and the legacy of your beloved, whose love has been left behind.

Just a Memory Away
By Rita Beer

I’m no longer by your side, but there’s no need to weep
I’ve left sweet memories I am hoping you will keep
Our joys and our memories stay in our hearts forever
Strengthening our special bond that parting cannot sever
Now it is time to carry on, so let your faith be strong
For I have gone to another place and am now where I belong
And as my loss brings you sorrow and dismay
Please don’t despair for I am here – just a memory away

The Path
By Rebecca Helbein

 You leave behind such memories that loved ones hold dear
They’ll take those down the path of their lives, though right now that path seems unclear

Today we gather together as you watch from above
And learn to walk a new life path, now lit with your love

Your light will never really fade, it actually gets brighter every day
As you lead them down their path of life, and show them how to carry on and lead the way

So continue your journey today, dear friends, and keep working through the pain
Your loved one’s light still shines bright and will guide you again and again

New Low Prices at The LLF Online Store!

Two Father’s Celebrate Life

Father’s Day is Sunday and is a time to not only celebrate the dads in our lives but also a time to remember the men we have lost. Here at The Living Legacy Foundation we are grateful for the opportunity to listen to the stories both recipients and donors share with us. The two stories below are from organ recipient fathers who celebrate the gift of life and are forever grateful for the extra time they have been given to share with their families.

Stan and his wife, Emily

Stan Kotler
6 year heart recipient
Potomac, MD

Six years ago, during recovery from my heart transplant at The University of Maryland Medical Center in Baltimore, MD my oldest grandson, then age 12, brought me a hat. The insignia on this hat says “Life Is Good.”  To this day, I wear this hat all the time because it expresses how I feel. Receiving the gift of life is a blessing words cannot adequately express. While I was in the hospital undergoing a battery of physical and psychological tests in preparation of becoming a heart transplant candidate, my wife was informed from my doctors I had about two months of life expectancy. Within three days of being placed on the heart transplant list, a healthy heart became available. Since my transplant, my life has been a phenomenal journey. We enjoy our relationship with our two sons and our six grandchildren, ages 8 to 18. Spending time with our families on holidays, birthdays, graduations and other happy events is what life is all about. Every day is a blessing and being given a second chance at life allows one to place the small challenges we all experience in their correct perspective.

Stan and his donor Mom, Adrienne

A little more than two years ago, my wife and I had the opportunity to meet my donor’s mother and her family. Although we come from different backgrounds and experiences we share a very common bond, we consider each other to be extended family. My donor’s mother donated seven healthy organs from her son to six different recipients. To this date, all recipients are healthy and well. My wife and I have dinner with my donor’s family about every two to three months. Our continued gratitude to my donor’s mom cannot be expressed in words other than “we love you.”

I also wish to express my gratitude to the heart transplant unit at The University of Maryland Medical Center. The team has been absolutely wonderful from the first day we met Dr. Erika Feller to the ongoing and continuous monitoring and semiannual checkups at the hospital. My wife and I are both organ donors as indicated on our driver’s license and we encourage everyone who is not, to consider the potential benefit you might provide to another person.

 _________________

Daronta Briggs
8 month kidney recipient
Owings Mills, Md.

As I close my eyes and visualize how my new life began on October 23, 2012, my heart fills with joy. On the morning of October 23rd at approximately 7:00am I received the gift of life from a selfless donor. My initial shock from the phone call wore off once I was in preparation for surgery. After receiving dialysis treatments four years, three times a week, I wished for a chance to spend more time with my family instead of being hooked up to machines four hours a day. Receiving a kidney transplant allows me more time with my family and a chance to focus on new endeavors, I am truly forever grateful.

There are just two of the many heartfelt stories LLF is grateful to receive every day.  For additional stories from recipients and donor families, please visit our website www.thellf.org

To register as an organ, eye and tissue donor, please visit www.donatelifemaryland.org or www.takeaminutesavealife.org

Want to share your story? We’d love to hear it. Email communications@thellf.org

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Calling All Men: When’s the Last Time You Saw a Doctor?

Summer is here and while most of us are focused on BBQs and bathing suits, The Living Legacy Foundation is in the midst of celebrating Men’s Health Month. Anchored by a congressional health education program, Men’s Health Month is celebrated across the country with screenings, health fairs, media appearances, along with other health education and outreach activities. This month allows health care providers, public policy makers, the media, and families an opportunity to encourage men to seek regular medical advice and encourage early detection and treatment of disease.

In recognition, LLF would like to share ways you can encourage and support Men’s Health Month.

• Plan an event in your workplace or community to spread the word about Men’s Health and encourage participation
• Download logos, flyers and posters to share online or in your community by visiting www.menshealthmonth.org
• Bring your coworkers and/or neighbors together to encourage getting healthy and active.
• Reach out to all the male’s in your life and ask them to visit the doctor regularly.

In the midst of enjoying all the activities of summer, take the time to encourage the males in your life to get regular checkups, eat right and exercise. A long and healthy life not only benefits the individual but his loved ones as well and can also make an impact on others. Make the decision to leave a legacy and save lives by signing up to become an organ, tissue, and eye donor. It only takes a minute – sign up now at www.takeaminutesavealife.org and share your decision with friends and family. Be a hero – sign up today!

For more information on Men’s Health Month and other ways to raise awareness please visit www.menshealthmonth.org

To register as an organ, eye and tissue donor, please visit www.donatelifemaryland.org or www.takeaminutesavealife.org

How are you celebrating Men’s Health Month? Share your story with us on Facebook!

20 Facts You Don’t Know About Organ, Eye and Tissue Donation

Leave a legacy behind by saying “yes” to organ, eye and tissue donation.

With all the myths and misconceptions about organ, eye and tissue donation, it can be hard to answer the question, “Would you like to be an organ donor?” Organ donation is a positive act which saves and enhances the lives of many. Currently, there are more than 117,000 people nationally waiting for a life-saving organ transplant and more than 2,300 of those live in Maryland. Knowing the facts about donation will help you make an informed decision to potentially give the gift of life. Here is a list of 20 facts you probably didn’t know about organ, eye and tissue donation:

1. No patient is ever too old or too young to give the gift of life. The decision to use a patient’s organs and tissue is based on strict medical criteria, not age.

2. One donor can save up to nine lives, enhance the lives of 50 people through tissue donation and restore sight for up to two people through cornea donation.

3. Every 12 minutes a new patient is added to the waitlist.

4. Becoming a donor costs nothing to the donor or their family.

5. The Maryland Donor Registry, www.donatelifemaryland.org, allows you to specify which organs and tissues you’d like to donate.

6. Once a person receives an organ transplant they take medications called immunosuppressant’s to help keep their immune system from attacking the new organ. These medications are taken for the rest of their lives.

7. The doctors working to save a patient’s life in an emergency room or a hospital’s intensive care unit are separate from the medical team involved in the donation transplantation process. Doctors first priority is to save lives.

8. Brain death is irreversible cessation of all functions of the brain and brainstem, as determined by the patient’s attending physician and appropriate consultants, using national testing guidelines developed by the American Academy of Neurology. Brain death is a medical and legal definition of death.

9. Death by cardiac criteria is defined as the cessation of cardiopulmonary function. When your heart and lungs stop working at the same time and cannot be restarted.

10. Very few medical conditions automatically disqualify someone from donating organs. The decision to use an organ is based on strict medical criteria.  

11. A donor is never transported from the hospital they are in for the recovery process. Everything is completed at the donor’s hospital.

12. If someone decides to become a living donor (donation of partial liver, one kidney or partial lung), they can still live a good quality of life after the donation.

13. During skin recovery for tissue donation, skin is only removed from the back and thighs.

14. For cornea donation, the part of the eye used is the cornea. The eye’s cornea is the clear front surface and is part of the eyeball wall. If you wear contact lenses, the cornea is where you are placing them.

15. Tissue donation includes veins, heart valves, skin, bone, connective tissues  and corneas.

16. In accordance with state and federal regulations, hospitals in our service area are required to contact The Living Legacy Foundation in the event of a patient’s death or imminent death.

17. Research shows a vast majority of religious groups support organ and tissue donation and transplantation so long as it does not impede the life or hasten the death of the donor.

18. A person can still have an open casket funeral if they donate their organs, eyes and tissues.

19. During a kidney transplant, sometimes doctors will leave the nonfunctioning kidney in the body and just add the donated kidney.

20. The MVA is not the only place you can register to be an organ, eye and tissue donor. You can designate yourself at  www.donatelifemaryland.org or at www.takeaminutesavealife.org.

For more information on The Living Legacy Foundation, visit www.thellf.org

The LLF Store Is Open!

The Living Legacy Foundation is thrilled to announce the opening of our online store. Now you can purchase donation gear to raise awareness for our life-saving mission. Some items for purchase are water bottles, lunch bags, travel mugs and t-shirts. All proceeds from your purchase will help The Living Legacy Foundation continue to provide exceptional support to Maryland donor families and raise awareness for organ, eye and tissue donation. Thank you for your commitment to helping raise awareness and honor the generous decision made by Maryland’s donors and their families.

Please follow this link to start shopping, www.thellf.org.

For suggestions on other products you would like to see, feel free to email us at communications@thellf.org.

Now you can support organ, eye and tissue donation in a stylish way.

Celebrating our Committed Hospital Partners During National Hospital Week

During the week of May 12-18, 2013, The Living Legacy Foundation is proud to recognize our hospital partners who support us in our life-saving mission. Hospitals play an important role in our mission to celebrate the lives of donors, support families and educate the public on organ, eye and tissue donation while raising awareness for the more than 2,300 Marylanders who are in need of a life-saving organ transplant. Throughout the year, area hospitals support our efforts to raise awareness by participating in different outreach activities. During the month of April, National Donate Life Month, area hospitals hosted information tables and some participated in the Hospital Donor Registry Challenge, which provided opportunities for hospital employees as well as visitors to designate themselves as organ, eye and tissue donors.

In addition to National Donate Life Month activities, many of our hospital partners participated in the Flags Across America Campaign by flying the highly recognizable Donate Life logo flag to show support for organ, eye and tissue donation. Along with flying the flag during the month of April, many hospitals raise the flag for someone who has made the selfless decision to save lives. The flag helps celebrate the generosity of donors, their families and raises awareness about the urgent need for life-saving organs and tissues.

Here are a list of hospitals in Maryland who have raised the Donate Life flag:

Flying the Donate Life Flag is a sign of remembrance for donor families and a memorial for those who have given the gift of life.

• Anne Arundel Medical Center
• Atlantic General Hospital
• Calvert Memorial Hospital
• Carroll Hospital Center
• Dorchester General Hospital
• Frederick Memorial Hospital
• Greater Baltimore Medical Center
• Harford Memorial Hospital
• The Johns Hopkins Hospital
• Johns Hopkins Bayview Medical Center
• MedStar Franklin Medical Center
• Memorial Hospital at Easton
• Meritus Medical Center
• Northwest Hospital
• Peninsula Regional Medical Center
• Sinai Hospital
• University of Maryland Medical Center
• University of Maryland St. Joseph Medical Center
• Upper Chesapeake Medical Center

  The Living Legacy Foundation would like thank our area hospitals for participating in activities focusing on raising awareness for organ, eye and tissue donation.

If the hospital you work for would like to get involved, contact your hospital services coordinator or e-mail hospitalservices@thellf.org.

For more information on The Living Legacy Foundation, visit http://www.thellf.org/