A life-changing gift: April is National Donate Life Month

Medical professionals, living donors and transplant recipients all speak out about organ donation

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©2019 Katie Gerber

Flags have been raised across the country to raise awareness for organ donation this April.

April is National Donate Life Month, and across the United States flags and voices are being raised to express the demand for more registered organ donors in the country.

“It’s an easy thing to do,” Eau Claire resident Bonnie Jo Begalske said. “Put it on your driver’s license, let your family all know … let people know that’s what you want done.”  

Checking “yes” on your driver’s license is what gives up to eight people a shot at a new life.

According to the United Network for Organ Sharing, about 115,000 people are on the national transplant waiting list, hoping to receive a call from their doctor that says a match has been found. More than 36,000 of those calls were made last year and advocates are looking to set a new record high as they have done the past six years.

Begalske knows what it feels like to save a life. Ten years ago, Begalske’s two nieces, Katie and Kayla, were T-boned by an oncoming vehicle. Kayla passed away due to the impact. A year before the accident, when Kayla earned her driver’s license, she had a conversation with her mother, Susan, about being an organ donor.

Susan told Kayla it was her decision, and after some deliberation Kayla replied that she was going to check “yes” because she wanted to help other people. It was because of this decision that a 12-year-old girl, Halley, whose last name was not provided, got a chance at a new life.

Halley, now 22, was suffering from a genetic liver disease when Kayla’s liver became available for transplantation. According to Halley’s family, she was able to survive only because of the donor liver from Kayla.

In addition to Halley, several other lifesaving transplants were possible because of Kayla’s decision to be a donor. Over the years, Kayla’s family has formed connections with most of the transplant recipients and these relationships — especially Halley’s — helped keep Kayla’s passing in perspective.  

Jill Ellefson, the head of the UW-Health transplant recovery team, said her job requires perspective because the 450 lifesaving transplants that occur each year at UW-Health often come at the cost of someone else’s life.

“Seeing families in their darkest hour, when they’ve lost a loved one is the hardest part. They are often going through it unexpectedly,” Ellefson said. “I would also say that’s the positive part of my job where, even though they’ve had a tragedy the families often tell us they feel comfort by knowing they could help others and that organ donation has often helped them through their grief.”

Hearts, pancreases, livers, lungs and intestines are all considered life-saving transplants.

Ellefson said 15 to 20 people on the national waiting list die every day due to a lack of available lifesaving organs. In addition to these life-saving transplants, there are other transplants that could be considered  lifegiving. According to UNOS, tissue and bone transplants contribute to one’s quality of life, and are often the reason patients’ medical conditions do not worsen.

Across the country in the Pacific-Northwest, Mitch Snyder, the recipient of a partial thickness corneal transplant, reflected on his journey and the improvement of his quality of life over the past two years.

As a result of a bad reaction to a procedure, Snyder had a buildup of scar tissue and lesions in his left eye that ultimately resulted in a need for corneal transplant. Though he was not completely blind, his world was becoming blurry. If a transplant were not an option, he would have been left with deteriorating vision in which light, color and movement were visible, but clarity was lacking.

“Without this I don’t know what I would have for vision,” Snyder said. “If both eyes were as bad as my one was before surgery, I’d be in a lot of trouble …  I wouldn’t be able to drive legally … I wouldn’t pass a driving test, and I can’t imagine what my life would be like without being able to drive.”

Snyder said that through the process of the transplant, the surgery and the recovery, he has been forced to stop and remember the effects a transplant can have on a life. It’s an effect that those who see a checkbox at the D.M.V. don’t always realize.

The United States has about 3 percent of the population registered to donate their organs after death, but recipients like Snyder think that the awareness drives and advocacy efforts by the public will help people realize the effect they can have and prevent them from checking “no.”

Jill Hoff Dillon, a living kidney donor and the co-founder of Central Wisconsin Gift of Life, said there are unfortunately many misconceptions and myths surrounding the process of organ donation.

“A lot of people think that everybody who dies can be an organ donor, but you actually have to die in a manner in which the organs can be procured from the body,” Dillon said. “You have to be on life support in a hospital situation in order to donate your organs, so that’s only about three percent of all deaths in the United States.”

Another myth Dillon and Jill Ellefson, the head of transplant recovery at UW-Health, said many tend to believe, is that the doctors at the scene of an accident or in the hospital will not try as hard to save a patient’s life. Dillon said that this is simply not true, that all medical professionals do their best to save a patient’s life, regardless of a patient’s decision to donate or not.

“We explain that there’s two separate teams. There’s a treating team at the hospital that does take care of the person in the emergency room or the ICU,” Ellefson said.  “There’s a totally separate transplant team … and we only get involved after that initial team has done everything they can to try and save the patient.”

Begalske agreed. Based on her family’s experience, the doctors who arrived on the scene of Kayla’s accident didn’t have time to check if she was a donor. According to Begalske, the conversation about donation only came after Kayla had been pronounced brain-dead and after all measures to save her life had failed.

Having the conversation

Recipients, living donors, medical professionals and deceased donors families say it is a conversation worth having with loved ones. There are still qualms about the organ donation process that need to be addressed since there are many misconceptions, as Dillon pointed out.

Snyder said during a conversation with an undertaker, he was told many deceased donors are not handled with respect. This conversation “scarred” him to the point that he has personally chosen not to be an organ donor. However, since he has now received donor tissue and has personally felt the benefits, he and his wife Elizabeth have had more conversations about the pros and cons of the organ donation.

“Have the conversation. Think about it, because you could really impact a life. It’s stopped me and forced me to actually stop,” Snyder said. “Is my fear of my body being cut up when I am dead, hacked apart for parts, is the fear of that … worth potentially denying somebody the chance to have a new life?”

Giving the gift

Dillon also saw the opportunity to donate a viable organ to one of her patients back in 2010. A family friend and patient of Dillon had been suffering from kidney failure and had been looking for a kidney for many years. As she was talking with her patient, Dillion heard an audible voice — though she’s not sure whose voice it was — in the room say to her, “Give him one of yours.”

So, she did. Or at least, she tried to.

After a series of physical and mental tests that took hours to complete, Dillon was approved to donate, and the process of organ donation began.

However, the condition of her friend was worsening. After some time, it became apparent that Dillon would no longer be able to donate her kidney to him, because his condition was advancing too quickly.  This ended a long journey of doctor’s visits and a close relationship that had formed between the two families. Even though Dillon was disappointed by this, she still felt donating her kidney was her “calling.”

After a series of failed attempts to connect with potential recipients, Dillon’s coworker approached her asking if she was still looking to donate. After replying yes, she was put in contact with her co worker’s friend, who needed to go on dialysis soon if no kidney was provided. Dillon offered, her recipient agreed, and the process of doctor’s visits began again.

After, tests had been completed and results were submitted to the lab for analysis they received a call with good news. The pair were a closer match than biological siblings.

Now, after a life-altering surgery and eight years, Dillon and her recipient, Sarah, are as close as sisters. They have shared their journey and have helped others through their own co-founded non-profit organization, Central Wisconsin Gift of Life. Ellefson said Wisconsin is one of the nation’s leaders in organ donation surgery and said she thinks the state should be proud of these numbers.

Success, failure, then success again

It was not until her late 40s that Bonnie Wallace realized there was something wrong.

She and her husband had just bought a house in Los Angeles and were applying for life insurance when her world shifted. The life insurance agent said protein had been found in Wallace’s urine and a checkup was needed to rule out conditions.

After her visit to the doctor, it was revealed Wallace had been living with uncontrolled hypotension, a condition that requires a constant collaborative working of the heart and kidneys to lower blood pressure.

To control the hypotension, Wallace said it is important to be on medication so kidneys don’t have to work in overdrive. However, because she was unaware of the problem, damage to her kidneys had already been done and the problem would worsen if a solution was not found.

Wallace enrolled in a private program with many others who also had some form of kidney disease. During the program, Wallace was educated about transplant surgeries, proper diet and information about the types of medications that needed to be limited.

“I became a label studier, so I knew what I was putting in my body,” Wallace said. “But it was advancing and there was nothing I could do about it.”

Wallace’s kidneys began to fail in 2008, and it was not until March of 2009 that she stopped working full time and accepted the donation from a friend who had promised her a kidney almost five years earlier.

“When I woke up from that surgery, I was immediately better,” Wallace said. “It was crazy, I thought because I was sick before … I looked like a cadaver walking truly because my kidneys weren’t functioning well.”

After having her first banana in 10 years and staying in the hospital for only four days to recover, Wallace was ready to go home. As she made her way back home, Wallace and her friend made a stop at the mall for two hours to walk off some of Wallace’s renewed energy.

“I felt so good,” Wallace said.

Things were going well, but not long after her transplant, signs of organ rejection occurred.

Kidney transplant recipients must take immunosuppressants to keep the immune system depressed so the body does not attack the foreign transplanted organ. However, a virus common in kidney transplant recipients, the BK virus, began to attack Wallace’s  donor kidney.

The virus, though normally mild, often attacks the immunocompromised recipients and if not caught in time, the virus can be lethal. Often, it is the immunosuppressants that feed the virus while they are supposed to keep the body from attacking the foreign organ.

By the time doctors figured out what was happening with Wallace’s kidney, it was too late, and the donor kidney had to be removed.

“It was a shock, because I felt good up until I lost that kidney,” Wallace said. “I was still working full time, I was volunteering at my church and I was really active, but I went on dialysis and I was immediately wiped out.”

Wallace lost 23 pounds in two months on dialysis, had migraines after every treatment, could not keep any food down and was restricted to a quart of water every 24 hours. Every Tuesday, Thursday and Saturday, Wallace woke up 2 a.m. to get to her treatment that was scheduled at 4:45 a.m.

After those five-hour treatments, Wallace then drove to work and would work her eight-hour shifts. This was her pattern for about three years.

While she was on dialysis, she was still looking for a donor, but she was told it would take seven to eight years to work her way up to the top of the transplant list. Though her situation was not optimal, Wallace said life was going OK.

Then the phone rang.

There had been an accident victim in New York, and two perfect match kidneys were available, but Wallace was one of three people who needed the transplant. The doctors told Wallace to go home and pack and if for some reason, one of the other recipients did not work out, she would be getting a kidney.

The phone didn’t ring that night, but it did the next morning

According to the rules of the transplant list, if a double organ transplant is needed, the organs need to come from the same donor. A kidney and pancreas were needed by a recipient in Iowa but since the pancreas was not a match, the kidney was directed to California where Wallace was anxiously awaiting its arrival and its inspection by the transplant committee.

“That was the longest 45 minutes of my entire life,” Wallace said. “I was just laying there in pre-op by myself waiting and just waiting and praying, ‘Oh, please let this kidney be healthy. Please, please, please.’ So the surgeon came down the hall toward the pre-op place where I was waiting … he had two thumbs up and I started to cry.”

Wallace’s “miracle kidney” has helped her regain about 80% full function in her kidneys. While she still needs to monitor her diet and medications, she said this transplant as well as the other transplant done five years earlier changed her life.

Wallace said she wished others knew about the need of organ donation and would check “yes” so they can help others have another shot at life.

“You don’t need your organs when you aren’t around anymore,” Wallace said. “Give somebody else the gift of life.”