Rev. Isaac Ruffin, an African American male, wearing a colorful scarf representing Black heritage, standing in front of an art display of glass plates in various shades of primary colors.

Celebrating Black History Month: Rev. Isaac Ruffin

Rev. Isaac Ruffin, an African American male, wearing a colorful scarf representing Black heritage, standing in front of an art display of glass plates in various shades of primary colors.

Rev. Isaac Ruffin, a Family Services Coordinator II at Midwest Transplant Network, shares his perspective in honor of Black History Month.

For more than 19 years, the Rev. Isaac Ruffin, Family Services Coordinator II, has served Midwest Transplant Network (MTN) donor families with all of his heart and soul. He has a passion for walking alongside families who are experiencing an unexpected loss and offering comfort, lending a kind and listening ear, and sharing how donation can help extend their loved one’s legacy.

“For my generation, with all of the history we have seen, Black History Month is a celebration of the coming to fruition of a people,” shared Ruffin. “It is a time to be seen as equals and fulfill our dreams, hopes, aspirations and our true potential.”

He’s inspired by his grandfathers – one a pastor and the other a deacon. Through their ministry, they served congregations, raised large families and were role models of compassion and integrity.

While completing his Clinical Pastoral Education at Research Medical Center, Ruffin had the opportunity to work with MTN as a hospital chaplain in caring for several donor families. He was very aware of some of the cultural concerns about organ donation within the Black American community. “I want to serve others and build trust with underserved and diverse communities as a face within one of those cultures myself.”

He understands the impact donation can have on an individual, a family and a community as his brother received the gift of a transplant many, many years ago. His work with donor families has always been about giving back as a part of his personal ministry and for the gift his brother and their family received.

Known for his quiet, infinite readiness to serve others, Rev. Ruffin finds peace in creating memories of donor heroes with their families. Over his almost two decades of service, countless families have experienced the love he brings when supporting them in making the generous decision to donate life on their most difficult day. He has built many bridges of trust – one family at a time – significantly impacting and bettering our community. MTN is eternally grateful for Rev. Ruffin as his joyful presence has made the same profound difference in every one of us.

In recognition of Black History Month, Rev. Ruffin shares his favorite poem, “Still I Rise” by Maya Angelou.

MTN Community Spotlight: Imagine the impact of a generous donation

A middle school multipurpose room with a performance stage. Rows of black stackable chairs with slips of purple paper to mark seat numbers for the ticketed show. Long tables filled with brightly wrapped candy, sweet treats and the smell of spun sugar from a cotton candy machine complement the anticipation.

It’s opening night.

The lights dim.

The curtain rises.

The show begins.

“Come with me, and you’ll be in a world of pure imagination. Take a look and you’ll see into your imagination.” ~ Willy Wonka & The Chocolate Factory

 

Students and families at Harmony Middle School in the Blue Valley School District raised $2,856 from their spring musical, “Willy Wonka,” and donated the ticket sales to Midwest Transplant Network in honor of a donor hero family.

Annually, the student cast gets to nominate a charity. Students give a quick speech about an organization that’s had an impact on them, and the cast votes to choose “the most deserving.” David Davis, theater director at Harmony Middle School, said this is the 15th year of the benefit performance.

Five people standing center stage in front of a curtain. Fourth person from the left is holding a microphone and reading from a sheet of paper.

The Dirks family and Midwest Transplant Network staff are center stage during intermission at Harmony Middle School in the Blue Valley School District.

This year, students Belle and Beau Dirks successfully advocated for MTN with their personal story. Their father, Josh Dirks, passed away in November 2021 and became an organ donor hero by way of his heart.

During intermission, the Dirks family took center stage – Belle and Beau, mom Tiffany, and sister Ella. Belle shared their organ donation journey from written remarks while Beau held a large, framed photo of their dad. Their grandparents, younger sister and family friends were in the audience, beaming with pride and emotion.

“…The day he went to heaven was the hardest day of my life. We were in his hospital room when they told us that he wasn’t coming home. There were so many people in the room, but I remember one lady, Ms. Gretchen, from Midwest Transplant Network. She hugged all of us and told us that it was going to be ok.

“…She told us what it means to be a donor, how important his decision was, and how he would be able to help someone else continue to live. Then, she laid a blanket on him that had the word HERO printed on it.”

Belle shared more of their story, then closed with a clear call to action:

“I know it is a difficult decision to become an organ donor, but I encourage you to sign up. Their motto is GIVE HOPE, SHARE LIFE — and that is what you do when you sign up to be an organ donor.

“You never know, you just might become a HERO in someone else’s story – Just like my daddy did!!”

The audience applauded.

The lights dimmed.

Five people are center stage during intermission at a school musical, posing for a photo.

The Dirks family and MTN staff after presenting a contribution to Midwest Transplant Network. From left to right: Tiffany Dirks, mom; Nichole Asquith, MTN; Beau holds a photo of Josh Dirks, father and donor hero; Belle and Ella Dirks.

And the show went on.

Midwest Transplant Network is appreciative to the students, families, teachers and staff of Harmony Middle School and their generous contribution to support organ, eye and tissue donation, and MTN is humbled to be a part of the Dirks family organ donation journey.

Please learn more about what it means to become a registered organ donor at mwtn.org.

A headshot of Taylor Brookins.

MTN Staff Spotlight — Taylor Brookins

Midwest Transplant Network is a co-sponsor of the OneLegacy Donate Life Rose Parade® float, which will be featured in the 2024 Rose Parade®. The OneLegacy Donate Life float honors the memory of donor heroes from across the country, including Jayme Sue Louque of Olathe, Kansas, a 14-year-old organ, eye and tissue donor. The float features a floragraph portrait of Jayme Sue made of organic materials.

MTN chooses a staff member to travel with the donor family to the Rose Parade® and we want to take a moment to share the connection and invite you to watch the 2024 Rose Parade® on Jan. 1 at 8 a.m. PST/10 a.m. CST on ABC, NBC or Univision.

 

MTN Staff Spotlight…

A headshot of Taylor Brookins.Taylor Brookins, LCSW, Manager, Family Services

Taylor’s professional career as a medical social worker includes experience in hospice, in-patient palliative care, pediatric intensive care, and end-of-life care. She has a Master of Social Work from the University of Kansas and is a licensed clinical social worker. She joined Midwest Transplant Network in April 2021 as a Family Services Coordinator and transitioned to her current role in April 2022. Taylor will accompany Wendy and Bryan Louque and their family to the 2024 Rose Parade® in honor of their daughter, Jayme Sue, who became a donor hero at age 14.


Explain your job as if you’re talking to a stranger in Target.

“I’d explain what MTN does as a whole, and I’d say that I work with donor heroes and donor families, and we walk families through the process of organ and tissue transplantation.

“I usually explain that I used to go into different hospitals and worked directly with families, and now I’ve transitioned into a manager role, and I support Family Services Coordinators who work with donor families in the hospitals.”


Did you have any hesitation about accepting the opportunity to support the Louque family? Why or why not?

“No hesitation. I was really excited! It’s an honor and I’m thankful to get to go. I know how important this is for the family and it’s truly an honor.”

 

What’s your connection to the Louque family?

“The Louque family brought up donation very early on during Jayme Sue’s hospitalization. They’re a giving family. I was the Family Services Coordinator who met with the family and supported them during the donation process. That was November 2021. I couldn’t believe it’s been two years. It doesn’t feel like it.”

 

Tell us three things you’re looking forward to about the Rose Parade experience.

“Being around donor families at the Rose Parade; in the work we do, we see families on their worst day, and the parade is a way to see the families celebrating loved ones.

“I’m looking forward to going with the family to decorate and put the finishing touches on the parade float, and mostly, I’m looking forward to being able to honor Jayme Sue and her family.

“The Louques are a very deserving donor family. They’re so passionate about donation because they’ve experienced it on both sides. Wendy is a living donor, and Bryan is a two-time kidney recipient – one from his wife, and from a deceased donor.”


What’s your favorite holiday memory?

“We always celebrated Christmas at my great grandma’s house in Wyoming, and she lived in a log home that my family actually built. It’s the epitome of a Christmas home. My great grandma and uncle decorated it every Christmas. It was super cozy, and my brother and cousins…we always spent that time together.

“My favorite memory is that my uncle dressed up as Santa Claus – we didn’t know it was him at the time – and they made the sound of reindeer hooves on the roof, and we could see Santa’s legs dangling in the window as he was getting ready to go to the chimney. The next morning, when we woke up, Santa had taken pictures of him drinking milk and eating cookies and left us notes…just such a special memory to know the lengths my family took to make Christmas special for us.”


What’s your favorite holiday side dish and your least favorite – as in you will not eat it?

“My favorite is definitely mashed potatoes, but I do mix corn with my mashed potatoes, so it’s like a dual side dish. The side dish I won’t eat is stuffing. I just don’t like stuffing. I never have and I never eat it.”


What’s your most memorable gift from when you were a kid?

“Oh my gosh…I can’t remember a gift, but I remember the feeling of being at my great grandma’s with my cousins. My family would make so much food, and my great grandma would make iced sugar cookies that were my favorite. And there would be so many desserts and pies…that’s what I remember.”


What’s your motivation to keep doing the work you do every day?

“When you’re a medical social worker, your motivation is to make a difference and to help people. In the roles I’ve had, there is not a lot of hope. But at MTN, everyone who works here makes a difference every day and saves lives. We get to witness family selflessness, and we get to offer hope on someone’s worst day. This is the best place to work and it’s an honor to do what we do.”


Is there anything you’d like to share that could offer a different perspective about organ donation?

“Something that I learned from Drew [Toler] is that donation doesn’t take away a family’s grief, but it provides peace and comfort on their grief journey. When someone is able to become a donor hero, they live on through others, and that can be comforting to a family.”

MTN Aviation: Serving the Mission through Flight

The grrrrrrrrr of a small plane speeding down a runway for takeoff; a shrill whistle and the clack, clack, clack of a freight train rolling down the tracks in the near distance; the whirling, choppy sound of an aircraft unseen.

These are the sounds of the Charles B. Wheeler Downtown Airport in Kansas City on a Wednesday morning, but the office of Midwest Transplant Network’s Aviation department is quiet. Inside the hangar, a plane sits at the ready to serve the mission of organ donation.

It’s 9 a.m. MTN Pilots Tom Carnahan and Tim Overman greet Genny Ly, a new Organ Procurement Coordinator, to show her the plane – an orientation to prepare for the moment she’ll be on a team that flies out for an organ recovery case.

Carnahan demonstrates how to open and close the door to board the plane, safety features inside the cabin, how to open the emergency exit and more. Walking around the plane, Carnahan points out areas along the wings to be careful; at the rear of the plane, he opens a small compartment revealing a cargo space for bags and equipment.

The plane, a Citation C3J+, has two seats in the front for pilots and eight seats in back. Most are window seats.

After touring the plane and the office, Overman and Carnahan chat with Ly before she goes to MTN’s headquarters to continue the day.

 

Mission Critical

“We are the only OPO in the country that owns and operates its aircraft. There are a few others who have a dedicated aircraft; however, they are managed by a charter service or other outside agency. The pilots and staff who work in MTN’s Aviation department are actual employees of MTN. MTN as an organization is also registered with the FAA as Part 91,” explained Lori Markham, RN, MSN, CCRN, Vice President & Chief Clinical Officer, MTN.

“Midwest Transplant Network is the sixth largest OPO by geography. With our aircraft, we’re able to respond quickly to donor hospitals anywhere in our service area. Because we can mobilize quickly, we are able to support our hospital partners, donor families and recover organs efficiently to maximize the gifts. Forty percent of overall donor patients are outside of the Kansas City metro, so having our own plane and pilots are critical.

“Otherwise, we’d rely on ground transportation – which could take hours – or we’d have to rely on charter or plane services that may not be readily available when needed.”

 

Being an MTN Pilot

Overman and Carnahan are two of nine pilots at MTN. It’s a fully staffed department, and both agree that having a full team makes a difference in work-life balance.

“It helps to be able to share the workload. We can make connections with each other, talk through needs, and it also means that the team can provide MTN full service.”

There are always two pilots on flights to transport a team and bring them back to Kansas City. The pilots know there is a time sensitivity with organs. The flight prep to get ready for a case includes weather and radars, wind speed and visibility, weight and balance for the plane to operate safely, filing a flight plan, determining alternate airports in case they can’t reach the actual destination and more.

Modern technology has made a difference in simplifying flight plans. “There were a lot of phone calls back in the day. Now we have GPS, digital apps and other tools, including the phone.”

Lemoine Davis, MBA, PMP, Manager, Aviation, leads the department.

“The MTN Aviation mission is ‘To provide safe, professional and efficient air transportation in response to MTN needs.’ Without the department, we would be strained to service our region as timelines to respond would be significantly increased or the cost to operate would increase as charters and ground transportation would be our only options.

“The training the pilots undergo regarding organ donation is informational, not technical. We provide a broad overview of the donation process and expand upon the areas they can, or might, influence. It gives the Aviation team an understanding of the importance of their role, the hazards associated with their cargo, and a general overview of how the aircraft is utilized,” said Davis.

 


Flexible and Responsive

Each day is different for staff at MTN, including pilots.

“A typical workday for our pilots includes coming on shift, either morning or evening, and waiting to be activated to fly within our service area. If during their shift they are not called out to fly, they could be fulfilling administrative duties or volunteering for an event within the organization. Our pilots are not required to work from the hangar as long as they can adhere to the two-hour callout timeline,” said Davis.

“The team who flies on the aircraft when transporting an organ can vary. Typically, we are flying the organ procurement team that includes an organ procurement coordinator, organ procurement preservation specialist, an organ procurement technician and/or family services staff.”

He described a recent fly-out to Joplin, Missouri, for a recovery.

“The pilots on shift flew the team out in the evening, waited on the ground for a few hours while the procedure took place, and later returned to Kansas City with the team who’d successfully recovered organs. They also brought back two additional passengers whose shift had ended.

“Overall, this took roughly four hours, which would’ve been significantly longer if they had to travel by car, or it would’ve cost more if MTN had to use charter services.”

 

MTN Aviation Fast Facts

1973 – Midwest Organ Bank created an in-house Aviation department at the urging of the Federal Aviation Administration to “ensure the safety of staff members and transplantable organs.”

2023 – Midwest Transplant Network is marking 50 years of Aviation and is the only organ procurement organization in the U.S. that owns and operates an aircraft. MTN staff can mobilize quickly to anywhere within the service area to support hospital partners and recover organs to maximize the gift of life.

  • Number of pilots: Five full-time and four part-time pilots
  • Range of experience: 8-48 years
  • Average experience: 20 years
  • Aviation career experience: military, private charter, private company, medical evacuation, regional airlines, flying bush planes in Alaska, or flying retired military aircraft.
  • Flight hours: Approximately 7.5 hours a week or 30 hours per month.
  • MTN service area: 150,000 sq miles covering the state of Kansas and western Missouri

 

A man standing next to the open door of a plane and talking to a woman.

Tom Carnahan, MTN pilot, and Genny Ly, organ procurement coordinator, stand outside the door of MTN’s aircraft during an orientation. The hangar door is open to a view of the downtown Kansas City skyline.

A small aircraft in an airplane hangar.

MTN’s airplane in the hangar, ready and waiting for its next flyout.

A pilot sits at the controls of a small plane.

Tim Overman, MTN pilot, sits at the controls of the plane to show the various screens of radar and other details necessary while flying a plane.

Pilots standing in formation in front of a plane owned by Midwest Transplant Network.

Midwest Transplant Network pilots in front of the MTN plane at the Charles B. Wheeler Downtown Airport in Kansas City, Missouri.

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Partner Spotlight — Lisa Miller, Jackson County, Kansas, Treasurer’s Office

Midwest Transplant Network partners with licensing, treasury and Department of Revenue offices in Kansas and western Missouri to grow the organ, eye and tissue donor registry. We spoke with Lisa Miller, Deputy Treasurer of the Jackson County, Kansas, Treasurer’s Office about why donation is so important to her.

Jackson County, Kansas Deputy Treasurer Lisa Miller

Jackson County, Kansas, Deputy Treasurer Lisa Miller

How does your specific office help inform and educate patrons on the importance of joining the donor registry?

We display all of the items that are provided by MTN and also participate in the promotions for National Donate Life Month and National DMV Appreciation Month with a display in our office.

We have in the past had our pictures of our displays in the local newspaper.

Why do you feel your office’s efforts to promote the need for organ, eye and tissue donors are so important?

Our office has a personal connection to organ donation. We have two employees with relatives who are recipients of organ donation and one employee who is a living donor.

Tell us about your connection to organ, eye and tissue donation.

In April 2004, my husband became ill and ended up in the hospital with an infection. After many doctor’s appointments and several years later, he ended up in the hospital and was diagnosed with cardiomyopathy. Our belief is that the infection had attacked his heart. His cardiologist referred us to the Saint Luke’s transplant program. After spending the first half of 2014 in and out of the hospital, he was finally added to the transplant waitlist in July. He entered the hospital in October and received his heart in December. Since, he has been able to see two of his children get married and is enjoying his four grandchildren and hunting with his sons.

What is the biggest misconception you hear about donation in your personal and/or professional life?

That the medical professionals will not provide the care needed to save a life if they know that the individual is a donor.

If there is one thing you would want to share with others about the importance of joining the donor registry, what would it be?

It truly is a gift of life.

Headshot of Dawn Romano

Breast Reconstruction Awareness Story: Dawn Romano

Dawn Romano, LCSW, LSCSW, MTN Family Services Coordinator III, opened up about her breast reconstruction experience for Breast Reconstruction Awareness (BRA) Day

Headshot of Dawn Romano

Dawn Romano, MTN staff member and breast cancer survivor

Dawn Romano is a clinical social worker who works in organ and tissue donation as a Family Services Coordinator for Midwest Transplant Network. In April 2008, Dawn’s life changed when she was diagnosed with an early stage of breast cancer. After undergoing a lumpectomy and 33 rounds of radiation, Dawn believed she was cancer-free and continued on with her life.

Things changed in the summer 2015 when Dawn felt a lump on her breast. Later, while getting a mammogram and biopsies, doctors confirmed that they had found two tumors. The cancer had returned, this time more aggressive. “Tears streamed from my eyes,” she recalled. “Reality had slapped me in the face.”

Through four grueling months of chemotherapy treatment, hair loss and discouragement, Dawn found strength from her faith, friends and family to continue working in organ and tissue donation. After undergoing a double mastectomy, Dawn and her surgeon discussed the possibility of breast reconstruction. “Thankfully, from my work at Midwest Transplant Network, I knew enough to ask my surgeon whether they would use any human tissue during my surgery. He told me yes,” she shared.

Thanks to the gift of skin from two donor heroes, Dawn finally began to heal. Her experience has also helped her develop a deeper appreciation of her work, especially donor families. “We often hear that tissue donation is life-enhancing, but for many of us, it has saved our lives in many ways,” Dawn shared. “This gift has made a huge impact on my life. To all donor families, please accept my deepest and most sincere thank you. You and your loved ones have made a difference in so many people’s lives. And for that, they will always be remembered by people like me.”

Story courtesy of MTF Biologics

Breast Reconstruction Awareness Story: Lisa Cummins

In honor of Breast Reconstruction Awareness (BRA) Day, MTN Quality Assurance Coordinator II Lisa Cummins, ASQ-CQIA, spoke about her journey with breast reconstruction. 

Headshot of Lisa Cummins

Lisa Cummins, MTN staff member and breast cancer survivor

For over 40 years, Lisa Cummins has worked in organ and tissue donation at Midwest Transplant Network. Her story begins in 2001, when she was first diagnosed with a rare type of cancer found in her uterus. Following a hysterectomy and five rounds of chemo, Lisa celebrated being cancer-free, but not for long.

“I had just hit my five-year mark when they found my first breast cancer,” she recalled. Diagnosed with an early stage of DCIS, or ductal carcinoma in situ, Lisa again underwent intense radiation treatment and another major surgery — this time using donated tissue. For the second time, Lisa believed she was cancer-free before receiving terrible news.

“At my five-year anniversary appointment — the golden mark where cancer patients can consider themselves true survivors — they found my second breast cancer,” she shared. Doctors confirmed that the cancer had returned in the same breast, this time more aggressive. Surgeons presented Lisa with the option of a mastectomy — a decision she would take one step further. “I decided that I did not want to go through it all over again, so I opted to have a double mastectomy,” she explained. Afterwards, Lisa underwent breast reconstruction, becoming a tissue recipient for the second time.

Today, Lisa celebrates being 11, 16 and 21 years cancer-free! Thanks to the gift from her donor, she returns to helping others in organ and tissue donation with a deeper appreciation for her life and work. She even uses her story at local hospitals, video conferences and live events to aid others through their breast cancer journeys and share the positive impact of donation. “There is not a day that goes by that I do not think of my donor families and am thankful for their selfless act of donation,” Lisa said, smiling. “I do not know who they are, so at every chance I get, I tell donor families ‘THANK YOU!’ Without their gift of life, I wouldn’t have been able to have reconstructive surgery. I can now say I am a survivor!”

Story courtesy of MTF Biologics

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Partner Spotlight — Linda Gerhardt, Jackson County, Kansas, Treasurer’s Office

As National DMV Appreciation Month comes to a close, Jackson County, Kansas, Treasurer Linda Gerhardt told us why organ, eye and tissue donation is personal to her.

Jackson County, Kansas, Treasurer Linda Gerhardt

Living donor and Jackson County, Kansas, Treasurer Linda Gerhardt

Mine is the story of a living kidney donor. My niece was diagnosed with diabetes when she was in high school. Her mother was diabetic, so she had inherited it. A few years after my niece got out of high school, she was continually sick and in and out of the hospital. She was on dialysis, and she did the dialysis at home at night and went to work during the day. She was a very hardworking, self-supporting young woman. The day came that she was told she needed a kidney transplant. She was put on the transplant waitlist and was told that could take quite a while.

As time went on, my niece became sicker; she was in and out of the hospital, and we worried she might not receive a kidney in time. One day I was at my mother’s, and she said to me, “If something were to happen to me, could Melody get one of my kidneys?” It suddenly opened my eyes. I told my sister of the conversation, and she said that she herself had asked the doctor about donating, and they had told her no because of a medical condition. I had never even given it a thought as a possibility. I was 39 years old and married with two boys. We were her dad’s sisters, so there was a chance we could match. Her parents were both deceased, and none of her brothers or sisters matched or for health reasons couldn’t donate. I suddenly realized this was something I could do.

I then started the process. I was an 80% match to Melody, and they told me that her dad and I probably would have been a perfect match. I had never been a person to go to the doctor unless I had to (kind of like not wanting to go to the dentist), but at the point of finding out I could help her, it was like God was leading my way. I had to monitor my blood pressure; I would go to the health department so they could record it for me. It would be high, and the nurse would say, “Let’s just visit for a while,” and then it would be fine. I passed all the tests.

We checked in at The University of Kansas Medical Center to do the surgery, and preliminary tests showed my niece had an infection, so it was put off for a month. The next time, we were good to go. My priest at church had announced to the congregation to pray for me and gave me a special blessing. It was all like it was meant to be.

On June 25, 2023, we marked 25 years since the transplant. I received the prettiest bouquet of flowers from her. Being an organ donor was never something I had considered, but knowing I could possibly save her life was such a good feeling. I never saw a bill for anything; it all went through my niece’s insurance.

When I was an organ donor, I did not work in the treasurer’s/driver’s license office. Now, I do, and I am honored to help inform people about and promote organ donation. It is amazing how surrounded we have been by organ donation in the courthouse. We’ve had a coworker’s husband receive a heart transplant and a coworker’s brother receive a kidney/pancreas transplant. And in the Register of Deeds office, a worker’s granddaughter received a lung transplant. On the third floor of the courthouse, a judge received a heart transplant, and a past employee’s husband received a kidney from his daughter. In some of these cases, I’m pretty sure they wouldn’t be here today if not for others’ generous donations.

We always participate in whatever we can to promote organ donation at our office. No one knows when they might be the next one to have a loved one suffering from an illness they never expected, whose life depends on your decision or someone else’s. If you have ever been faced with someone you know needing an organ transplant, you would know how important it is to be on the donor registry. Please think about organ donation.

Our thanks to Linda Gerhardt for writing this guest blog post.

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Partner Spotlight — Stefanie Dotson, Maryville Licensing Bureau

In honor of National DMV Appreciation Month, we asked Assistant Manager Stefanie Dotson of the Maryville (Missouri) Licensing Bureau about her important role in the donation process. She also shared her personal ties to organ, eye and tissue donation in this Q&A.

Stefanie Dotson with her nephew, donor hero Aiden Jones

Maryville Licensing Bureau Assistant Manager Stefanie Dotson (left) with her nephew, donor hero Aiden

Q: Tell us a bit about the role the DMV plays in organ, eye and tissue donation.

A: As a DMV worker, any time I issue a permit or driver’s license, we ask if they would like to be an organ, eye and tissue donor. I have found that many people are unaware of the program and have no knowledge of the benefits. At that time, I am able to inform them with the facts and use my personal experiences so they can make the right decision for them.

 

Q: Tell us about your connection to organ, eye and/or tissue donation.

A: I have several connections to the organ, eye and tissue donation program. I have a friend who has received two kidneys, and I’m happy to report she’s doing great. My mother-in-law had three kinds of cancer, and my husband was still able to donate her corneas when she passed. The one most dear to my heart is my organ donor hero nephew. He was 16 years old when tragedy struck, and we found ourselves devastated by the news he would not be going home with us. I looked at my sister and said, “You know what the next question is, right?” She said, “No, what?” I said, “Do you want to donate his organs?” She took a bit to talk it over and decided she would. The honor walk was amazing. My sister has since received letters from some of the recipients, which have been amazing to read.

 

Q: How does your specific office help inform and educate patrons on the importance of joining the donor registry?

A: Our office always tries to find fun ways to open up the conversation about being a donor. We like to participate in any decorating contests that are available, we have different displays with facts about being a donor and we include the people we know are recipients or have become a donor hero in our display. Around the holidays, we decorate a tree with the donation colors and add bracelets for the public.

 

Q: Why do you feel your office’s efforts to promote the need for organ, eye and tissue donors are so important?

A: I feel it is important to inform people of the facts about being a donor. There are lots of misconceptions out there about the details that scare people away. When people are informed with facts, it’s easier for them to make the decision to be an organ donor.

 

Q: What is the biggest misconception you hear about donation that you hear in your personal and/or professional life?

A: The biggest misconception I hear is: “I was told I can’t donate my organs by this doctor because of this.”

My mother-in-law’s corneas were still used even though she had three different cancers.

 

Q: If there is one thing you’d want to share with others about the importance of joining the donor registry, what would it be?

A: I just would like people to realize how life-changing it is to be a recipient of an organ. Your loved one gets to live on and is celebrated by people you never knew existed because they are a part of your loved one, with them every day.

MTN Spotlight – Barb Sheble, Ambassador

August is National Multiethnic Donor Awareness Month, a collaborative initiative to save and improve the quality of life of diverse communities by creating a positive culture for organ, eye and tissue donation.

Midwest Transplant Network will recognize and support National Multiethnic Donor Awareness Month with a series of original content featuring community partners, staff and volunteer Ambassadors who represent diversity and the mission to give hope and share life. We hope you enjoy the perspectives of our friends!

MTN Spotlight…Barb Sheble

In college, Barb Sheble passed out during track practice. A few months later, she got sick and passed out again. She was diagnosed with a congenital heart condition. That was in 1991.

In the mid- ‘90s, doctors said a transplant would be in her future.

“In the ’90s, you didn’t hear as much about organ donation,” said Sheble. “My only knowledge about organ donation was that a friend’s brother signed up to be a donor on his license. He died in a car accident and his organs were donated.”

Sheble said she “lived with the condition for 18 years” before being placed on the transplant waitlist in January 2009. She received a heart the same year.

Sheble, whose heritage is Citizen Potawatomi Nation, is an MTN Ambassador who’s volunteered since 2013. As a kid, she wanted to be a marine biologist; as an adult, she’s a medical lab scientist. The favorite songs on her playlist are “too many to count” because music is her peace and solace; she loves to rest and relax in the mountains, and when it comes to roller coasters or Ferris wheels, it’s “Roller coasters all day!”


What are three ways that being a transplant recipient has changed your life besides giving you another chance?

It has given me friends that I would have never met, and now I couldn’t imagine life without them. It has helped me see life on a broader scale — that the little troubles are just bumps in the road on this journey we call life.

It has taught me that we have to live each day with a purpose and to cherish what we have. Our family, friends and our experiences with those around us are more important than any of the tangible things we think we need.

Did you have any concerns or hesitancy about being a transplant recipient? If so, what were they?
Honestly, not really. I’d been through so much over the previous 18 years that to me, it was just the next thing I needed to do to keep moving forward on my journey.

How does your Native American heritage influence your conversations about organ donation?
I’m not sure I can say it is necessarily due to my heritage, but I just always want to be an advocate. I want people to know that donation works, so I talk about it as much as I can! I am proud to be Native American, and I am proud to be a recipient. My tribal ancestors were very strong-willed people, so I feel my Native American heritage has prepared me to be successful on my transplant journey.

In what ways do you advocate for organ donation?
Any way I can! I donate time when I can. I talk about it any chance I can, and I try every day to show that through transplant, you can live a full life. You can work, travel, exercise, go on hikes…you name it. I want people to see that if there is a will, you can make your ideals for your life happen. It’s all in the attitude!

Tell us about the Transplant Games. What have you experienced?
AMAZING! That one word sums up the games. Do they always run smoothly? No. But do I ever regret going? NEVER. The games and the people I know from them are what I look forward to all year long. You will always find inspiration at the games! From meeting donor families to meeting other recipients, the competition and the sportsmanship is literally the best thing!

Sheble has participated in the Transplant Games of America and World Transplant Games since 2012 in events that include shot put; discus and the ball throw; javelin; Pétanque doubles; volleyball and pickleball doubles. She’s been to Transplant Games of America in Grand Rapids, Michigan; Houston; Cleveland; Salt Lake City and San Diego, and to World Transplant Games in South Africa, Argentina, Spain, United Kingdom and Australia.