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MTN Family Services

Photo of John Michael Segars

Family Services Coordinator John Michael Segars, PharmD

 

As we continue to highlight our talented teams, we look next at the compassionate individuals who support families through some of their most difficult moments. Our Family Services staff members work with families whose loved one has the potential to donate an organ(s). To learn more about this unique and powerful profession, we asked Family Services Coordinator II John Michael Segars, PharmD, to answer these questions.

Briefly describe what Family Services Coordinators (FSCs) do.

  • Family Services Coordinators are the wonderful people who support families on the worst days of their lives. We are there to provide compassion and kindness during a tragic loss to help families in moments of grief. We approach families during this difficult time of losing someone, and we offer them the opportunity to save and enhance lives through organ, eye and tissue donation. Many families see this as the only bit of light on the darkest of days when they realize their loved one can be a hero.

How long do Family Services Coordinators typically spend with a family throughout the donation process? What type(s) of support do they provide?

  • In general, we can spend several hours with a family, but this can vary; sometimes our relationships with families last days, weeks or years, depending on the connection and aftercare provided. I think of our role as listeners. We provide grief support in every way, whether that be hearing family members tell their story, hugging them as they cry, making calls to help them find a funeral home so we can provide a path to next steps, etc.

Why do specially trained individuals approach families about donation instead of the patient’s nurse, doctor, etc.?

  • We have a Midwest Transplant Network Family Services Coordinator approach families because we want to keep a distinction between the care being provided by the hospital staff and conversations about next steps occurring once a death has taken place or a decision for comfort care has been made. We don’t want to put our hospital partners in a position of having a conflict of interest in any way.

How might Family Services Coordinators support families who are on the fence about donation?

  • I personally like to make a connection with the family and learn about who their loved one was. Let’s say Larry was a police officer who was passionate about serving his community and died while on duty. His family isn’t sure about donation. I may ask questions about him and how he lived his life. I’d bring it back to what Larry would have wanted. I’d ask his family if he was the type of man that helped others. I may ask them if Larry knew they were making a loving decision on his behalf to help someone else, would he be supportive of that decision? I’d also discuss recipients and how donation doesn’t just benefit the life or lives saved — it also enhances the experiences of that person’s family members and friends, creating a ripple effect of positivity in communities.

What is the one thing you’d want to tell someone who knows nothing about your work?

  • I would say that I work in organ, eye and tissue donation with the most amazing team on Earth because they make miracles happen. I have always felt so honored to be a part of the process that is connected to the phone call a patient will receive that will save his or her life. We work hard to honor our donors as the heroes they are to save lives of individuals we will never meet.

What are some typical degrees and/or career paths staff members pursue before joining the Family Services department?

  • We have myriad backgrounds in our department. Most common are social work, nursing and ministry/divinity, but we have a wonderful foliage of differing backgrounds in the Family Services department, from pharmacy to business to funeral directing, etc.

Have Family Services Coordinators’ roles shifted during the pandemic? If so, how?

  • We have increased the number of phone approaches we do, as families are not always allowed at the hospital due to coronavirus-related visitor restrictions. We also are now approaching families on COVID-19-positive patients so we can make sure we are offering the opportunity to save a life to anyone with an eligible gift.

Why should people say “yes” to organ, eye and tissue donation?

  • This is a very personal decision that should be right for each individual. For me, it is all about leaving a legacy of helping someone else. To this day, I get chills on my arms when a family brings up donation before we arrive onsite because it tells me that on one of their worst days, they are thinking of how to help someone else. In my job, I truly get to witness the very best of people.

Anything else you’d like to add?

  • We’re hiring! We’d love to add eligible, compassionate people to our family! View our current job openings here.
Gary Dixon with Chris Hutson Jr.'s family

Making Sure “Little Chris” Is Never Forgotten

Gary Dixon with Chris Hutson Jr.'s family

Heart recipient and MTN Ambassador Gary Dixon (center) with donor Chris Hutson Jr.’s family

My name is Gary Dixon. I am here today because of the generosity and gift of a stranger who I now know as Chris Hutson Jr.

In 1999, I was diagnosed with cardiomyopathy, which is a technical term for an enlarged heart muscle. With meds and doctor visits, life continued until 2009, when I had a defibrillator installed to restart my heart if needed, and life went on.

In January 2017 my condition worsened to the point that a heart transplant was my only option. I never realized how sick I was, but luckily Dr. Kao, my cardiologist, did. On Feb. 1, 2017, I was put on the heart transplant list, and my wait began.

On April 21, 2017, I went for what started as a routine office visit that included an exciting wheelchair ride to the emergency room. I was admitted to Saint Luke’s Mid America Heart Institute and told I would be there until I received a heart transplant or became an organ donor.

My stay, which was about 5 1/2 weeks, had many new experiences — some better than others — and early on, the mantra of “one day closer” started to change my attitude and approach to life, and I still use it today. It also has a special meaning to Tesha, the mother of my donor, “Little Chris.”

On May 28, 2017, I got my gift. I was quickly better, not only physically, but also mentally and emotionally. My family will tell you I was a different person. Little Chris was truly changing and improving my life.

I started writing my donor family right after I left the hospital. I had to thank them for my gift and let them know how it had changed my life, but it was bittersweet because I was celebrating, and they were grieving.

In June 2018, I met my donor family, and since then, I have been blessed to get to know what a caring young man my donor — my constant companion, my buddy, Little Chris — is and the loving, sharing family he comes from. We have continued to get to know each other and share stories and memories, and our families are coming together and supporting each other as our journey through life continues.

I will continue to honor my gift and tell anyone who will listen what a great young man Little Chris is and make sure he is never forgotten.

I would like to share one last thought. Every decision you make is like throwing a stone into the water; it has a ripple effect. On Feb. 1, 2017, Chris Hutson Jr. (“Little Chris”) made a decision and signed his driver’s license to become an organ donor. I am part of Chris Hutson Jr.’s ripple effect.

I appreciate you allowing me to share my story and tell you how organ donation has changed my life.

Our thanks to Gary Dixon for writing this guest blog post.

 

Barb Sheble

“Honoring My Donor the Best I Can”

Barb Sheble

Heart recipient and MTN Ambassador Barb Sheble

After passing out at track practice in January of my freshman year of college, I was sent to two different cardiologists for tests, and since neither could see anything wrong with me, I was cleared to return to practice and was able to finish out the year. About two weeks after the end of the outdoor track season, in mid-May of 1991, I started feeling like I did in January, so my parents took me to the emergency department at a local hospital. While answering the general check-in questions, I passed out, and once back in an exam room, I was found to have a serious heart arrhythmia called ventricular tachycardia (VT). My heart was going way too fast and was in the wrong rhythm.

This hospital did not specialize in these types of cases so, once stabilized, I was transferred to another, more specialized hospital in town, where I was diagnosed with a rare congenital heart condition called arrhythmogenic right ventricular dysplasia (ARVD). This condition not only causes VT, but it also causes fatty, fibrous tissue to build up on the right ventricle.

Over the next 18 years, with the help of an amazing cardiologist, I was able to live a really good life overall, despite having to manage my condition. I was able to finish college with two bachelor’s degrees, be successful working full time as a Medical Lab Scientist, travel and enjoy life with my family and friends! Sure, there were procedures that I had to go through from time to time, like getting an implantable defibrillator in 1995 and a few replacements over the years. And there were times spent in the hospital, but I always tried to just do my best to make each day fun regardless of where I was and what I was doing!

On July 2, 2008, things started to take a turn for the worse. I can still remember like it was yesterday exactly where I was when it seems like a switch was flipped. Beginning on that summer day, I was either in the doctor’s office or in the hospital at least once a week, every week until a night in mid-November when everything came to a head. That night I began having VT that my defibrillator could not pace me out of, so it had to shock me instead. In total, I was shocked seven times before we could get to the hospital and get an IV medicine that would control my heart. The next day I had the last of my many ablation procedures that are used to help eliminate the areas that cause the heart to go into the wrong rhythm. That was also the day that we decided it was finally time to be evaluated for a heart transplant. Honestly, it was not a surprise when my doctor brought it up; I had known for years that transplant was going to be my last-ditch treatment option, and after how things had gone since July, I kind of figured we were working our way there.

In early December 2008, I was evaluated for transplant, and it was determined that I was indeed to that point. On Jan. 6, 2009, I was placed on the transplant list. Over the next seven months and 12 days, I continued to work and do my best to enjoy life. At first, I was still full time but over time had to reduce my hours, and by summer I was down to four hours day. By July 2009, I ended up needing to go on IV medication 24 hours a day, but I was lucky enough to be able to do this at home and still go to work. That was a true blessing, as many people need to wait in the hospital for a while before their transplant!

On Aug. 18, 2009, early in the morning, THE CALL finally came. They had a heart for me! This was an especially amazing day to get the greatest gift that anyone can give, because that day is also my mom’s birthday! It is so special to be able to share that day with her each year, and I cannot thank my donor and their family enough.

Recovery had its little hiccups and took a little longer than some. We also learned that my heart was actually much worse than any of us knew. It was the size of an NFL football and was black/dead on the inside.

Since being given this gift, I have tried to live life to its fullest, and I still always try to have fun and find the positive in each day. I continue to work full time in the lab, travel any chance I get, and spend time as much as I can with my family and friends. I get to be a part of big family moments like weddings, graduations and births. I have been able to get back into my throwing events in track and pick up a few other sports, while competing in the both the World Transplant Games and the Transplant Games of America.

I strive to honor my donor the best I can, and there is not a day that goes by that I don’t think of them and their family. While I have not been able to meet my donor’s family, and I know nothing about my hero, I know I would not be here today without their generosity! A fellow heart recipient once told me he feels as though every donor family is his donor family, and I couldn’t agree more! I have been fortunate enough to meet many other donor families who amaze me, and I am blessed to call some of them my adopted donor families!

Over the years, things have not always been easy, but that does not mean that my life has not been a blessing! As I look back, I sometimes think, “Yeah, that wasn’t the best day” or, “Well, yeah, I could have done without going through that,” but that doesn’t mean that I would want to change things. This journey has made me who I am. It has brought so many wonderful people into my life whom I honestly can’t imagine my life without! It has taught me that I am strong and that with the right people and support system, I can get through anything!

When I first got sick, I didn’t think I would make it to 40, and here I am rocketing toward 50 in fewer than two years! In May, I will celebrate the fact that it has been 30 years since I nearly died. In August, thanks to God, my donor, their family and my amazing medical team, we will celebrate my 12th heart birthday. I think it is safe to say, life doesn’t get any better than that!

Our thanks to Barb Sheble for writing this guest blog post.

 

2020: A Record-Breaking Year

Midwest Transplant Network’s lifesaving and life-enhancing work continued in 2020, despite the pandemic. We coordinated a record number of organ donations for an increase of 21% from our previous record (set in 2019), recovered tissues from nearly 2,000 donors and enabled nearly 900 organ transplants.

We are incredibly grateful for our donor heroes and their families, our community partners and our staff members for helping us give the gift of life to so many in need during a challenging year.

2020 EOY graphic

 

Thank you, healthcare and front-line heroes

2020 in Review

Despite the many challenges MTN and organizations globally faced, 2020 was a year of true heroism as we worked with our community partners to save and enhance lives through organ, eye and tissue donation. None of these incredible gifts would be possible without our generous donors and their families. Thank you to everyone who played a role in our 2020 successes!

Take a look back at our remarkable year:

 

Ryan Hampel

Honoring the “Coolest 3-Year-Old” in Support of Organ, Eye and Tissue Donation

Ryan HampelAccording to Matt Hampel, his youngest daughter, Ryan, was a force to be reckoned with: She was cool, polite, loving and smart, with a smile that could light up any room.

When 3-year-old Ryan’s life was tragically cut short in a multi-car crash, Matt and Ryan’s mother made the courageous and selfless decision to donate her organs so that others could live. Matt said that, “while you feel like everything around you is going wrong, you have an obligation to do what’s right.”

Just a few weeks after Ryan’s death, friends of Matt’s organized a baseball tournament to honor Ryan and support Matt, who had been severely injured in the same crash. In the three years since, Matt and his wife, Heather, have organized the tournament and grown it exponentially, generously donating all proceeds to Midwest Transplant Network. They held their biggest tournament yet in August 2020, featuring 67 teams and raising nearly $30,000 — amid a pandemic, nonetheless.

Matt credits the people in his support system for not only helping him and Heather process Ryan’s death, but also for teaching Matt’s other children the importance of family, even if members of that “family” are not connected by blood.

“We took Ryan everywhere, and everybody knew her, and everybody knows my other two girls,” he said. “I have an obligation for them to be exposed and to see the good people we have around us.”

Although the Ryan Grace Memorial Baseball Tournament is already a huge success each year, Heather said she and Matt are determined to continually improve it, creating an even greater impact on their community.

“We hope Ryan knows that we’re doing the best we can and that we are trying to spread the message of being kind,” she said.

If he could talk to Ryan today, Matt would make sure she knows exactly how loved she continues to be — by himself, her sisters, Heather and so many people in the community. “For as little as she was,” he said, “she had such a huge crater that she left.”

To learn more about the Ryan Grace Memorial Baseball Tournament, visit ryangracememorial.org.

MTN Logo

Employee Spotlight: Midge Dempsey

Check out our latest blog post and Employee Spotlight. This time we hear from Midge Dempsey, a Family Services Coordinator based in Wichita, as she talks about her role in the community, multicultural awareness, and her thoughts on organ, eye and tissue donation.

Get to know Midge:

 

Midwest Transplant Network Logo

Midwest Transplant Network Receives Architectural Approval for Headquarters Expansion

With site plan approval for alterations and additions from the City of Westwood Planning Commission, Midwest Transplant Network (MTN) will soon begin construction document production for a new Donor Care Unit at its Westwood, Kansas, headquarters. Through this addition and remodel of MTN’s existing building, MTN and architecture firm Hoefer Wysocki will create an on-site recovery facility for organ, eye and tissue donors.

Currently, MTN clinicians collaborate with hospital healthcare teams to care for donors in hospitals located within MTN’s service area. The new centralized approach from MTN will allow for specialized donor care to help reduce the burden on hospital resources and enable more predictable timeframes for families and transplant teams.

“Creating this Donor Care Unit within Midwest Transplant Network is the right thing to do for the citizens of the Kansas City area and surrounding communities to improve organ donation,” said Dr. A. Michael Borkon, Co-Director of Saint Luke’s Mid America Heart Institute and Surgical Director of Heart Transplant at Saint Luke’s Hospital; MTN Governing Board Chair. “It is a very timely construction, as constraints are being placed on our ability to maximize organ donation due to the COVID-19 pandemic and the fact that ICU beds are in short supply.

“The Donor Care Unit will allow us to not only streamline the donation process, but also improve the number of organs that we can obtain from each donor because we can work through the time required to make the necessary changes to improve lung and heart function that ordinarily would not be prioritized in busy ICUs today.”

 

About Midwest Transplant Network
Midwest Transplant Network has been connecting lives through organ donation since 1973. As the federally designated not-for-profit organ procurement organization (OPO) for Kansas and the western two-thirds of Missouri, Midwest Transplant Network provides services including organ procurement; surgical tissue and eye recovery; laboratory testing; and 24-hour rapid response for referrals from hospital partners. Midwest Transplant Network ranks in the top 10% in the country among OPOs, which reflects the organization’s quality, professionalism and excellence in partnerships throughout the region. For more information, visit mwtn.org.

About Hoefer Wysocki
Founded in 1996, Hoefer Wysocki is a multidisciplinary architecture, interior design, medical equipment planning and clinical technology consultancy known for collaborating with clients to create performance-driven solutions. From offices in Kansas City and Dallas, the firm works with clients in healthcare, higher education, government and commercial markets on projects across the U.S. For more information, please visit hoeferwysocki.com.

 

Portrait of Jan Finn

MTN President/CEO Jan Finn Becomes AOPO President-Elect

VIENNA, Va. (July 2, 2020) — The Association of Organ Procurement Organizations (AOPO) has named Midwest Transplant Network (MTN) President/Chief Executive Officer Jan Finn, RN, MSN its President-Elect. This role includes significant responsibilities with AOPO — the nonprofit organization representing the 58 federally designated organ procurement organizations — including leading the strategic planning process, collaborating with AOPO councils, and advocating nationally for issues as they relate to donation and transplantation.

With this appointment, Finn will serve on AOPO’s Executive Committee for three years and will assume the role of President for 2021-2022. As AOPO President, Finn will be the organization’s spokesperson and Chairman of the Board of Directors and also will serve as a member of the United Network for Organ Sharing (UNOS) Board of Directors

“I am honored to represent MTN, those in our service area and the entire organ procurement organization (OPO) community,” said Finn. “AOPO is actively involved in advocacy for all donor families and recipients in ensuring each OPO strives for excellence in donation practice to ensure desperately needed organs for transplantation, and I am happy to lend my voice to such meaningful work.”

Throughout her time on AOPO’s Executive Committee, Finn said she hopes to foster collaboration between OPOs to provide a unified voice as the national industry expert

“My goal is to engage OPOs with known best practices to help those at other OPOs so we all can truly maximize the gift of life through organ, eye and tissue donation,” she said.

 

About Midwest Transplant Network
Midwest Transplant Network has been connecting lives through organ donation since 1973. As the federally designated not-for-profit organ procurement organization (OPO) for Kansas and the western two-thirds of Missouri, Midwest Transplant Network provides services including organ procurement; surgical tissue and eye recovery; laboratory testing; and 24-hour rapid response for referrals from hospital partners. Midwest Transplant Network ranks in the top 10% in the country among OPOs, which reflects the organization’s quality, professionalism and excellence in partnerships throughout the region. For more information, visit mwtn.org.

About the Association of Organ Procurement Organizations
The Association of Organ Procurement Organizations (AOPO) leads the nation’s organ donation process through innovation, advocacy and education. AOPO advances organ donation and transplantation by driving continual improvement of the donation process, collaborating with stakeholders and sharing best practices with their organ procurement organization members. For more information, visit aopo.org.

 

Image of Colleen and Alonzo Jamison

Former Basketball Star Alonzo Jamison Teams Up with Wife Colleen Jamison in Support of Organ, Eye and Tissue Donation

WESTWOOD, Kan. (June 22, 2020) — Initially hesitant to talk about his need for a kidney transplant, Green Ribbon Champion Alonzo Jamison has found his voice. He now formally advocates for people to become registered organ, eye and tissue donors, years after undergoing dialysis and, later, receiving a kidney transplant from a living donor.

For the second year of his Green Ribbon Campaign, former University of Kansas power forward Jamison is partnering with a fellow donation advocate: his wife, Colleen Jamison. An attorney, Colleen spends much of her free time volunteering for the National Kidney Foundation and testifying for pro-donation legislation.

“I think education is really important, and I want to do whatever I can to get the word out,” Colleen said.

While Alonzo waited for a lifesaving kidney transplant, he underwent almost two years of nightly dialysis treatments.

“Physically, it was a chore,” Colleen said. “I wasn’t in his head, so I can’t even imagine how it must have been for him mentally.”

After keeping his diagnosis largely under wraps, Alonzo eventually decided to share with others his need of a kidney transplant.

“I had always encouraged Alonzo to be public with it, and he was reluctant,” Colleen said. “Then something happened to change that: A young man who Alonzo used to coach in basketball was public on social media about his medical issues. And Alonzo and I talked about it and decided that, if this young man is brave enough to go public, then maybe it’s time that Alonzo do the same.”

Alonzo and Colleen published a call for help on social media, and news stations that previously had covered Alonzo as a basketball player contacted him to find out more and help spread the word. Eventually, one of Colleen’s business acquaintances, Wichita native and Army veteran Shekinah Bailey, asked how he could be tested to potentially donate a kidney to Alonzo. Bailey was a match, and he soon donated one of his kidneys to Alonzo.

“After his transplant, Alonzo looked so much healthier — which he was, because he had a kidney that was functioning properly,” Colleen said.

Alonzo added: “Shekinah didn’t know me, and he had no obligation to help me, but that’s the kind of person he is. When it came down to saving my life, he stepped up to the plate. Through organ donation, people from all walks of life can provide these amazing gifts for each other.”

Alonzo and Bailey now are a team, bonded for life through this unique and humbling experience. Alonzo also speaks to the importance of his other MVP off the court.

“My wife, thankfully, is doing a lot to raise awareness for donation,” Alonzo said. “She was there for me when I went through my dialysis and things of that nature. I am so grateful that she was there for me.”

Everyone can be a registered organ donor — regardless of age or medical history — and the registration process is quick and easy. Individuals can sign up at ShareLifeMidwest.com or at the DMV when obtaining or renewing a driver’s license or ID card. More information about how to help support organ donation is available at mwtn.org/community-outreach.