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MTN Donor Family Coordinators

Donor Family Coordinators

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.

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MTN Donation Communications Coordinators

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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.

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MTN Family Services

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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.

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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.