Guest Author – Midwest Transplant Network

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

September 28, 2023/in

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.

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.

MTN Donor Family Coordinators

November 16, 2021/in

/by Midwest Transplant Network

Donor Family Coordinators Kara Gartner (left) and Denise Cooper

This week, we’re highlighting Midwest Transplant Network’s Donor Family Support program — made up of caring staff members who communicate with and provide care for donor families after their loved one’s donation. In our first post, we heard from Donation Communications Coordinators Jessica Cleary and Lindy Maska. For today’s post, Donor Family Coordinators Denise Cooper and Kara Gartner answered a few questions about their roles.

Briefly describe what Donor Family Coordinators do.

Donor Family Coordinators are responsible for all communication between donor families and recipients. We also provide recipient follow up to donor families upon request.

Another big part of our job is planning all the celebrations and special events for donor families.

For how long will MTN support a donor family after their loved one’s donation?

MTN’s formal Donor Family Support program is two years, but all families have the opportunity to stay on our mailing list indefinitely. Families are also able to rejoin at any time by filling out a request on our Serenity Newsletter page at mtn.org/serenity.

What are donor family events, and how can families get involved?

Each year, MTN hosts a variety of donor family days for all our donor families to attend. In recent years, we have held events at the Kansas City Zoo, Sedgwick County Zoo, Warm Springs Ranch and the Joplin Pumpkin Patch. MTN donor family events are a great way to meet other donor families while also remembering your loved one.

We also host our Celebration of Heroes in Kansas City, Wichita, Joplin and Columbia. The Celebration of Heroes is a way to honor organ, eye and tissue donors and their families. MTN presents each family with a beautifully handcrafted stained-glass heart to honor their loved one. Families also have the opportunity to pin their quilt square on the Donor Memorial Quilt during the celebration.

Information about how to register for the next celebration and donor family events will be in the Serenity newsletters and on the MTN website.

How can a donor family communicate with their loved one’s recipient(s)? Similarly, how can a transplant recipient communicate with their donor’s family?

Correspondence with your loved one’s recipients has no time limit. We will continue to forward communication to both parties regardless of a donor family’s participation in our Donor Family Support program.

When a donor family decides to write to their loved one’s recipients, they would send the letter to MTN. We then forward the letter to the recipient’s transplant center, and it is forwarded to the recipient.

When a recipient writes to their donor’s family, they give the letter to their transplant center coordinator. The coordinator then forwards the letter to MTN, and we then send it to the family.

Can donor families who initially do not wish to receive support from MTN later connect with the Donor Family Support program? If so, how?

Yes, the opportunity to receive support from MTN is always available. If at any time a family would like to be added to our newsletter mailing list or has any questions, they can call us at 913-262-1668 or connect with us through our website at mwtn.org/contact-us.

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

It is an honor to support donor families whose loved ones have given the gift of organ, eye or tissue gifts.

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

A YES to donation is one of the most selfless and generous things a person can do. Donation can help someone’s child, sister/brother, mother/father, etc. and give a stranger the gift of life or enhance their lives with tissue donation. These gifts cause a ripple effect, touching so many other lives.

MTN Donation Communications Coordinators

November 12, 2021/in

/by Midwest Transplant Network

Photo of MTN's Donation Communications Coordinators

Donation Communications Coordinators Lindy Maska (left) and Jessica Cleary

This week, we’re highlighting Midwest Transplant Network’s Donor Family Support program — made up of caring staff members who communicate with and provide care for donor families after their loved one’s donation. In this first post, we hear from Donation Communications Coordinators Jessica Cleary and Lindy Maska.

Briefly describe what Donation Communications Coordinators do.

We coordinate follow-up with all our organ, eye and tissue donor families to provide information about the gifts their loved one was able to donate. We also coordinate follow-up with the clinical staff involved in the donation so that they can see the impact their work has on saving and improving lives. After the initial donation, we provide ongoing support to donor families as we continue to remember and appreciate their loved one’s legacy of providing hope and life to others.

How many letters do you send out to families each month? To transplant centers? To donor hospitals?

There is a lot of variation in the number of letters sent out weekly, but very roughly:

We send about 170 tissue and organ outcome letters out to families each month.
We send around 800 follow-up letters each month to families three months, six months, one year and two years after their loved one’s donation.
We send about 750 letters to donor hospitals per month.

How do Donation Communications Coordinators work with other members of the Donor Family Support Program to provide ongoing support for donor families?

We help with the planning and execution of events for our donor families as well as work with the Donor Family Services Coordinators to ensure families receive any additional support they may need, from donor hero bracelets to grief resources.

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

For many families, knowing who their loved one was able to help through donation provides a great deal of hope in a difficult time as they realize that their loved one’s legacy lives on.

What are some typical degrees and/or career paths staff members pursue before joining the Donor Family Support Program?

There is really no typical degree staff members pursue before joining the Donor Family Support Program. The most important quality of someone joining our department is a desire to help others through their grief journey.

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

The opportunity to help others through donation is more unique than many people realize; not every person who says “yes” will necessarily be a donor. However, by saying “yes,” you provide hope to the thousands of people who are awaiting transplant.

Photographic image of Megan and Chris Paone

Family Services Manager Shares About Her Donor Hero

September 22, 2021/in

/by Midwest Transplant Network

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.

MTN Family Services

September 17, 2021/in

/by Midwest Transplant Network

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.

MTN Tissue Services

July 23, 2021/in

/by Midwest Transplant Network

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

February 26, 2021/in

/by Gary Dixon

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.

“Honoring My Donor the Best I Can”

February 11, 2021/in

/by 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.