Photographic image of Megan and Chris Paone

Family Services Manager Shares About Her Donor Hero

Chris Paone Donor Memorial Card image

Chris’ Donor Memorial Card

Hello! My name is Megan Paone, and I am the Manager, Family Services here at MTN. Chris was my husband of almost 10 years. Chris was medically very sick and was hospitalized in November 2020, the night before Thanksgiving. Unfortunately, he became very unstable on day four of his intensive care unit stay, and it was apparent the amazing medical team had done everything medically that they could do for him.

Once I made the very difficult decision to stop aggressive therapies and keep him comfortable, I was not even thinking about Chris being an organ donor — he was so sick and was not like what I thought of a “typical” patient who would be an eligible organ donor. I have worked at MTN for more than seven years and live donation daily, and it still did not cross my mind in my cloud of grief. The wonderful nurse called in the referral to MTN while I was calling my family to return to the hospital to say their goodbyes.

I then received a call from Family Services Coordinator Gretchen, and she shared that it was believed that Chris could actually be a donor and save the lives of two people through kidney donation. When I heard this news, my intense sadness turned to hope, and I felt a huge wave of peace fall over me. He died peacefully right after 9 p.m. with our family by his side.

He then went to the operating room and was able to save the lives of two people here in the Midwest with his kidneys: a 70-year-old man and a 53-year-old woman. These two people’s lives were saved because of my husband and the forward thinking of our amazing clinical staff at MTN. It gives me a sense of peace every day to know this, and it has really helped me along my grief journey.

Our thanks to Megan Paone, LMSW, for writing this guest blog post.

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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.
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MTN Tissue Services

Tissue Services - New Staff Members

Some of MTN’s newest Tissue Services staff members with our Wednesday – Friday team

 

Most people are familiar with organ donation, yet many know less about tissue donation and transplantation. The life-enhancing — and sometimes lifesaving — gift of tissue donation can help grateful recipients heal from painful injuries, return to active lifestyles and more. We asked our Tissue Services Manager, Jeff Allison, CTBS, and Director of Tissue Services, Melissa Williams, MSW, CEBT, CTBS, to answer these questions to share the importance of this less commonly known type of donation.

Briefly describe types of donatable tissue and common uses associated with them.

We recover dermis, bone, veins, tendons, heart valves, pericardium and ocular tissue.

  • Dermis is used in skin grafts for burn victims, in dental surgeries, and for breast reconstruction post-mastectomy.
  • Bone can be used in many forms for replacement post-tumor resection, in spinal surgeries and to aid in the healing of complex fractures.
  • Saphenous veins and femoral veins are used for various types of vascular surgeries.
  • Aortoiliac arteries are used to replace infected synthetic grafts or to replace damaged aortoiliac arteries.
  • Tendons are used for various sports medicine and orthopedic surgeries.
  • Heart valves are used to replace infected or malfunctioning valves.
  • Corneas are used to replace damaged or diseased corneas.
  • Pericardium is used for scrotal surgeries.

What impact can a tissue transplant have on an individual? Can tissue transplants be lifesaving?

While tissue transplants are not usually seen as lifesaving, there are two tissues that MTN recovers that could be considered lifesaving: heart valves and aortoiliac arteries. While most tissue transplants are considered life-enhancing, most transplant patients see them as providing a new outlook on life.

What are the most common types of tissues recipients need?

  • Tendons
  • Bone
  • Dermis
  • Corneas
  • Heart valves

What is one misconception about tissue donation that you would like to address?

Many people think that if you are older or have cancer or diabetes, you can’t be a donor. We have a questionnaire that the family answers, and those answers determine if the patient will be or not be a donor. You can donate tissue up to age 100. Even those with cancer and diabetes can donate some tissues.

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

This job is very rewarding. It is very nice to see the letters that donor families and recipients exchange about the donor and the new life the recipient received.

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

  • Surgical technician
  • Embalmer
  • Paramedic
  • Biology degree

At a high level, describe how tissue donation/transplantation varies from organ donation/transplantation.

Tissue donors have had a medical event that has caused their hearts to stop working; they have been pronounced cardiac deceased by a medical professional. Tissue recovery takes place up to 24 hours after cardiac death, whereas an organ donor must be hospitalized on ventilator and at or near brain death. During an organ recovery, a medical professional (surgeon or a highly trained preservationist) recovers the organs that have to be transplanted as quickly as six hours and as long as 24 hours after recovery. Tissue can be preserved for up to five years before being transplanted. Organ transplants save lives, and tissue transplants typically are life-enhancing.

Why should people say “yes” to tissue donation?

People should say “yes” to tissue donation because there is a great need for all tissue that we can recover, and by becoming a tissue donor, you can help on average 100 people have improved quality of life in your death.

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.

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Laboratory Sets Milestone Amid Pandemic

In our recent blog post, we talked to Midwest Transplant Network’s Laboratory Director, Scott McDonald, about our histocompatibility lab that performs tests in support of organ, eye and tissue donation. After sharing the background of how our laboratory functions, we wanted to take a closer look at how our lab operates, as well as the volume of work our lab staff members produce and how their work has been impacted by the COVID-19 pandemic.

Because of the spontaneous nature of organ donation, our lab functions 24 hours a day, 365 days per year, performing the histocompatibility testing necessary to ensure the best match between donated organs and transplant recipients.

Throughout the early days of the pandemic through the present, our Laboratory Services staff members have been hard at work — even performing unusually high testing numbers for several months so far in 2020. They recently set a milestone by performing a record 3,000 tests in the months of June, July and August, while meeting established turnaround times 94% of the time.

The pandemic initially significantly impacted laboratory testing, as many transplant centers put certain transplants on hold. Once hospitals and health systems received COVID-19 screening tests, they could resume transplantation services that were previously on hold. Since then, requests for MTN’s laboratory services have only risen.

The team has adjusted to these increased demands by implementing 24/7 staffing shifts, working with an administrator on call for oversight, and prioritizing each request for patient and donor testing. They continually seek opportunities to improve services as their testing numbers continue to grow.

Maintaining a commitment to their lifesaving work and consistently striving to achieve the highest standards, MTN Laboratory Services staff members exceed expectations while also facing an extreme public health crisis. Together with their clinical coworkers in MTN’s Organ Procurement and Tissue Procurement departments and their non-clinical colleagues, our Laboratory Services team saves lives by honoring the gift of organ and tissue donation with dignity and compassion.

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MTN Laboratory Services

Did you know that Midwest Transplant Network provides state-of-the-art histocompatibility testing for transplant and cancer centers across Kansas and western Missouri? We are a leader in HLA testing and the designated organ procurement organization (OPO) lab that provides histocompatibility services for organ transplantation throughout MTN’s service area. But what is HLA testing? And why are histocompatibility services important? We recently asked our Laboratory Director, Scott McDonald, to answer a few questions about the lab and the tests they perform to help better understand this crucial work and its impact on organ, eye and tissue donation.

 

Briefly describe MTN’s laboratory. 

The MTN laboratory provides histocompatibility transplant services for a population of 5.6 million, which includes five transplant centers and 15 programs. With state-of-the-art testing instruments and highly skilled staff, the MTN laboratory is focused on promoting quality services while supporting innovative advancements in the field of transplantation.

 

What is histocompatibility testing, and how does it come into play with organ, eye and tissue donation?

Histocompatibility testing specifically determines genetic compatibility between the patient and potential organ donor. Each person carries unique genes that, in the setting of transplant, can be seen by the recipient immune system as foreign and cause rejection. Histocompatibility testing finds the best match to prevent graft rejection.

Cornea and tissue transplants don’t require histocompatibility testing. However, infectious disease testing is required to prevent communicable disease transmission.

 

For what type(s) of transplant does MTN’s lab perform tests?

MTN provides histocompatibility testing services to support the following transplants:

  • Kidney
  • Pancreas
  • Heart
  • Bone marrow
  • Liver

 

Describe the general process for matching a donated organ to a recipient. At a high level, who and what are involved in the process?

Compatibility between donor and recipient is determined by identifying protein markers called human leukocyte antigens (HLA). This is accomplished by molecular methods, such as polymerase chain reaction (PCR), which uses genomic DNA isolated from donor and recipient blood. In addition, we test the recipient’s blood to make sure that they do not carry harmful antibodies that can reject the graft. We use the results of both of these procedures to identify the best possible matches between the donor and recipient to promote a successful transplant.

 

What area does MTN’s lab serve?

MTN’s laboratory is the designated OPO histocompatibility lab for the state of Kansas and western Missouri. This includes histocompatibility services to the following transplant centers: the University of Kansas Health System, Saint Luke’s Hospital (Kansas City), Research Medical Center, University Hospital and Children’s Mercy Kansas City.