Thinking about the life moments that could have been missed is almost too difficult to stomach.
Without a life-saving kidney transplant he received in 2010, Mark Ulrey likely wouldn’t have been able to officiate the wedding of his oldest daughter, Jackie.
He wouldn’t be able to see his middle daughter, Bethany, graduate from Center Grove, or his youngest daughter Jessica start her freshman year at the high school.
All of it was possible because of one person’s extraordinary contribution.
“Because what my donor did for me, I’ve been able to see all of these special moments that a dad would want to see,” he said. “Without that gift, my life could be completely different.”
Six years have passed since Ulrey and his sister, Lisa Edwards, each received transplants to correct a genetic disorder that had destroyed their own kidneys. Though the process has come with its challenges, it also has allowed the siblings to enjoy a life they never would have without the transplants.
As they reflect on the generosity of their donors, they also want stress how something as simple as being an organ donor can ripple through the lives of many other people.
“I’m very blessed. I was able to see all of my children graduate from school, my son just got engaged and will get married next year. My stepdaughter got married and just had her first baby,” Edwards said. “These are all things I wouldn’t have been able to see without a transplant.”
Life has resumed to as close to normal as it can for Ulrey and Edwards following the transplants.
Ulrey, 46, is the facilities services director at Mount Pleasant Christian Church. He works 40 or more hours each week and takes part in worship services, small group meetings, youth sports and other activities going on throughout the church.
He has resumed officiating youth and high school basketball, a passion which he has pursued for more than 20 years. Before his transplant, and in the years following, he didn’t have the energy to call games.
Officiating allows him to be part of the basketball community, even though a knee injury means he can no longer play himself.
Probably the only side effect he still deals with is the fatigue that comes from having one working kidney. Even that isn’t as severe or debilitating as what he experienced before the transplant, Ulrey said.
“I’m active. I do probably close to 30 basketball games a season, running up and down the court. I’m very active here at the church with different ministries and leading home groups.
Edwards, 53, still gets tired throughout the day, but it doesn’t prevent her from working more than 40 hours each week for the city of Greenwood.
“Being tired is what I notice more than anything. Other than that, you’d never notice anything was wrong,” she said. “I feel wonderful. There’s nothing I can complain about at all.”
As young adults, both Ulrey and Edwards had been diagnosed with uromodulin associated kidney disease, a life-threatening genetic disorder that prevents the kidney from cycling a naturally occurring protein called creatinine from cycling out of the body. As the protein builds up, the organs function less and less, finally ceasing to work at all.
The disease is so rare it accounts for fewer than 1 percent of all kidney disease, according to the U.S. National Library of Medicine’s Genetics Home Reference.
Their mother died from the disease in 1990. An aunt, grandmother and great-grandfather also fell victim to it. With the knowledge that Ulrey and Edwards carried the genes to develop the disease, they closely monitored their kidney function and had their blood tested every six months.
As their kidney function dwindled, they started to suffer from extreme fatigue. Ulrey would typically be able to only make it through half a day of work at Mount Pleasant Christian Church before having to leave and go to bed.
Edwards had low iron levels in her blood, leaving her immune system weakened and also sapping her energy.
As test results revealed that creatinine was building up to a level three times what is considered healthy, it became clear that both Ulrey and Edwards were going to need a kidney transplant to survive.
The pair were put on the transplant list, prepared to wait up to five years or more before their turn for a match could be found. They also reached out to friends and family to try and find someone whose had the same blood type and was healthy enough to donate a kidney.
For more than a year, they repeatedly came agonizingly close to getting their transplants. Ulrey had three surgeries called off because doctors became worried that the transplants would put the donors in too much risk.
Edwards had the transplant surgery completed in 2009, only to have the organ die the next day after the main artery feeding the organ had been blocked accidentally.
But finally, they received their life-saving surgeries in 2010, just a couple of months apart. Ulrey’s donor turned out to be his wife’s sister. Edwards received hers from her stepdaughter.
One of the most daunting challenges immediately following the surgery was navigating the medication that would now become a daily part of their lives.
Transplant recipients need to take dozens of pills each day to ensure their immune system doesn’t attack their new organ and make their body reject it. Other medications ensure that those immunosuppressants don’t damage the body in other ways.
Their immune systems are still compromised, and will be for the rest of their lives. That means that during certain times of year, when the flu or other illnesses are rampant, Ulrey and Edwards need to be careful where they go and who they’re around.
But with some organization, even that has become commonplace. Edwards lays out all of her medications out every Sunday night, preparing and grouping them so she knows what she’s taken and when.
“That was the biggest obstacle — going from taking no meds to taking a lot of meds,” she said. “But it’s all worth it. You don’t complain about it now, you just do it.”
Both brother and sister have their blood monitored every three months, to ensure their new kidneys are working properly. To this point, everything has come back positively.
Because the disease is hereditary, both Ulrey and Edwards have ensured their children are monitored and tracked. Ulrey’s three daughters are part of an intensive study in Europe, one of the first to focus solely on uromodulin associated kidney disease, to monitor their health.
Once those results are returned, they’ll have a more clear picture on how to manage their health moving forward, Ulrey said.
With both receiving their transplants around the holiday season, this time of year always takes on a special significance.
“If I didn’t get this transplant, I don’t know what or where I’d be,” he said. “I’m still active, I’m still a dad, I’m still a husband, I still can do all of these things. People need to be aware of the gift they can give to somebody who needs an organ transplant.”
Both Ulrey and Edwards have shared their story to help others in their transplant journeys. They have spoken at awareness-raising events to relate the importance of organ donation.
Edwards is quick to talk with anyone she meets about organ donation. She had volunteered for the Indiana Donor Network, the state’s designated organ recovery organization, and visited hospitals to share her story.
“A lot of people don’t understand the importance of being a donor. They think they don’t qualify for it, or they hear scary stories that they don’t want to go through,” she said. “But I’m sure to tell anyone who will listen, be sure to check that box, it’s very important.”
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Why is it important to consider organ and tissue donation?
Nearly 1,500 Hoosiers and more than 120,000 people nationwide are waiting for life-saving organ transplants. Each day 22 people on average die in the U.S. because a donated organ wasn’t available in time.
Who can donate?
Almost every person can be a donor. Interested people should not rule themselves out due to age or any medical condition. Physicians will determine at the time of death what organs and tissues can be donated.
How do I register my donation decision?
You can register your decision to be an organ and tissue donor online at IndianaDonorNetwork.org, at a Bureau of Motor Vehicles branch or by filling out a written donor registration form. Please share your decision to be a donor with your family.
What organs can be donated?
Organs that can be donated for transplantation include kidneys, heart, lungs, liver, pancreas and small intestine. Tissues that can be donated include corneas, skin, heart valves, bones, veins and tendons.
How are organs distributed to patients waiting for transplants?
Each patient waiting for an organ transplant is listed with the United Network for Organ Sharing, the agency responsible for ensuring that donated organs are distributed fairly. When a donor is identified, the donor’s blood type, tissue type, body weight, size, etc., are matched against the list of patients currently waiting for transplant. In addition, the recipient’s severity of illness and time on the waiting list are factored into the matching process.
How long must a patient wait for a transplant?
The time a patient spends on the waiting list for an organ can vary from a few days to several years. The length of a patient’s wait is affected by several factors, including the urgency of his or her medical condition and the availability of donated organs.
Will my medical care change because of my decision to donate?
Absolutely not. The quality of medical care will not change, regardless of your decision. All patients continue to receive the excellent care they deserve. Permission for organ/tissue donation is only effective in the event of death.
Is the identity of recipients revealed to the donor family?
The identity of both the donor and the recipient is confidential. Indiana Donor Network will provide the donor’s family with basic information about the recipients, such as age, sex, profession and general location. Some donor family members and recipients choose to communicate anonymously, and Indiana Donor Network facilitates this process.
Will organ/tissue donation interfere with funeral arrangements or change my appearance?
An open casket funeral is possible for organ and tissue donors. Through the entire donation process, the donor is treated with care, respect and dignity.
When must the organs or tissues be removed?
Organs must be removed as soon as possible after the determination of brain death, usually within 12 to 36 hours. Donated tissues must be removed within 12 hours of death.
What happens when donated organs are removed?
The recipient transplant team travels to the hospital where the donor is located. Once the organs have been removed, they are cooled and preserved. The team will then return to the hospital where transplantation of that organ will take place.
Will my family be charged for the donation?
No. All costs related to organ and tissue donation are paid by the recovery agencies.
— Information from the Indiana Donor Network
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Indiana organ donation and transplants
Transplants performed
2016: 512
2015: 582
2014: 609
2013: 566
2012: 611
Organ donors
2016: 279
2015: 316
2014: 303
2013: 274
2012: 290
— — Information from the Organ Procurement and Transplantation Network as of Oct. 31
Organ transplant waiting list — Indiana
All: 1,403
Kidney: 1,250
Liver: 45
Pancreas: 18
Kidney/pancreas: 28
Heart: 40
Lung: 14
Intestine: 8
— Information from the Organ Procurement and Transplantation Network as of Nov. 25
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