Mike Butler says 'life's been wonderful' since double-organ transplant

April was a busy month for Hagerstown resident Mike Butler. He's a low-key guy, but he is filled with missionary zeal. His life was changed, made more complete. He owes a debt, and he wants to pay it forward.

Seventeen years ago, Butler received a double-organ transplant — a kidney and an pancreas. In 24 hours, his life changed. He went from being a diabetic with kidney failure to a healthy, active man.


So he wants to bring his message to others.

April was Organ Donation Awareness Month. Although donors can register throughout the year, Butler and other volunteers with Living Legacy Foundation based in Baltimore which partner with Donate Life Maryland in April to get the word out and register donors.

More than 114,000 people nationwide are waiting on an organ, eye or tissue donation, according to Donate Life Maryland. More than 2,000 people in the state of Maryland are on the critical donor waiting list. And every day, 18 people die waiting on a donation.

For Butler, who is the Western Maryland representative for Donate Life Maryland, it's personal.

"Life's been so wonderful since my transplant," he said recently by phone. "I used to take a table-full of medicine, but currently, after 17 years with this kidney and pancreas, I am down to five (medications) a day. And I no longer have to take insulin. I'm no longer considered a diabetic. My life's a joy anymore."

Butler acknowledged that the act of donating organs is bittersweet. For a person with a failed kidney or lung, a donation can save a life or restore a person to a more vibrant health. But, except for "living donations — when a living person donates a kidney, some bone marrow or a small portion of a few organs — organs can't be transplanted until the donor has died. Sometimes that death is unexpected or tragic.

So Butler's joy at his return to health was tempered by his knowledge that someone died before he could receive his new organs.

"Someone has lost part of their family, and everyone has grieving time," he said. "I sent this letter out, and I told (the donor's mother), 'I (wish) we could invent a word to say "thank you" for how I feel, for how grateful I am, because it is just night and day. Everybody knows the big change in me.'"

Natalie Benavides, executive director of Donate Life Maryland, said surviving family members sometimes object to following through with a donor's wishes. She said Butler is a great example of the positive impact of donating organs.

"He would never have been able to do that without someone donating their organs," she said.



One recipient's story

Butler, who turns 49 this month, said he has always been active. He was born and raised in Hagerstown, worked a full career in corrections and law enforcement and, now retired, volunteers all over Western Maryland with Legacy of Life.

But he's lived with health issues from a young age. Early in life, he was diagnosed with a chronic disease, Type 1 diabetes.

"I was diagnosed with diabetes at 12," he said. "That was back in 1976. That was the year before Sweet-n-Low was invented. (There were) no blood-pressure-testing machines. No diabetic menus. No education for people with diabetes. It was hard, especially for a kid growing up trying to live a normal life."

Butler said he had to take daily insulin shots to survive, but he tried to live an ordinary, active life — played three sports in high school, involved in church, worked two jobs.

"Just an average teenager, but having to deal with diabetes, and having to take an insulin shot every day," he said.

He earned a degree from Hagerstown Junior College and took a job with Frederick County Sheriff's Office. He married and had a son. All things considered, he was satisfied with life.

"I lived the American dream — house, marriage. Everything went well, considering my diabetes," he said. "Really, I did the best I could with what I had."

That changed in 1991, when his blood sugar level and blood pressures surged up and down. Despite following his strict diabetic diet, despite working closely with his doctor, Butler said his kidneys began to fail. He felt helpless.

"This is the first time it actually happened to me: I couldn't control my diabetes," he said.

He began to retain fluids. In early 1993, he ballooned from 170 pounds to close to 220 in just a couple months.

And then, one day while running an obstacle course to pass a physical at work, Butler fell and couldn't get up.

"Right before the end, right before I hit the finish line, I fell," he said. "And this is the scary part. My mind was saying 'Get up. Get up.' But my body wouldn't move."

His kidneys had failed. Butler went on dialysis to filter excess fluids and toxins from his blood. The experience was overwhelming.

"The first time, they took 32 pounds of fluid weight out of me. That's how much I'd built up," he said. "I was kind of married to the machine. I was on for three and a half hours, three times a week. It just sucked the life out of me."

Dialysis allowed Butler to survive the second major health crisis in his life, but it came at a cost. Because his body couldn't get rid of excess fluid, he had to limit what he ate and drank.

"You know, when you're on the diabetic diet, you think they take everything away. But when you're on the diabetic-renal diet, that diabetic (diet) is like a smorgasbord," he said. "I could eat a half-dollar size piece of fish, turkey or chicken — that was all (the meat) I could eat. No beef. I had to stay away from that because of the dialysis. And I could barely drink anything."

Butler said he did what he had to do to survive, but he also stayed active — coaching Little League, participating in church, going to work. He said he didn't just want to sit around.

His doctors offered one solution: Replace his failed organs.

"Through my dialysis, right away, I got placed on the transplant waiting list," Butler said. "The doctors at the time said, 'Mike, you're still young and strong, and we think if we give you a kidney and a pancreas, that you'd do a lot better than just giving you a kidney.'"



Finding a match

Transplants are not automatically successful. The human body is a complex, finely tuned organism. It's not like an automobile motor. You can't simply pop the hood, swap an old, broken part for a new one, close everything up, and off you go.

For one thing, if a donor's organ doesn't match a recipient's body closely enough, it will be treated as an invading organism and the recipient's body will try to defend itself. This can result in a severe autoimmune reaction in the recipient, even death. So finding a good match is crucial.

Butler said in his case, there were six criteria that doctors were looking for that would indicate a good match with a potential donor. Key criteria were blood type, tissue type, organ size and distance between the donor and Butler. One other criterion was the medical need for transplantation, which Butler fulfilled when he went on dialysis. A sixth criterion — time spent on the waiting list — would rank Butler higher or lower than another potential recipient if all other criteria matched.

There's no guarantee a person with failed kidneys will ever find a match. The number of registered organ donors is small, and sometimes surviving family members overrule a donor's stated wishes. Natalie Benavides said many people have deep-seated emotions and beliefs connected to death. And sometimes it's hard to talk about things related to death.

"If you think about it, (organ donation) is an end-of-life decision. (Author Elizabeth) Kubler-Ross said, 'Death is the last taboo.' Those are the kinds of things we have to talk about, but we don't want to," Benavides said.

Sometimes a registered donor can't donate organs. Sometimes the way a person dies can make organs unsuitable for transplantation. Timing is important, too. Death is typically unanticipated. Doctors in transplantation teams must be able to work fast when an organ donation becomes possible.

"Once somebody is deceased, they test them," Butler said. "You got within 24 hours to get the tissue. Someone on life support, the organs can keep living until they are taken and transplanted."

With so many variables, all a potential recipient can do is hope and wait. Butler's doctors gave him a beeper. He kept it on him at all times. He waited. His friends and family waited, too.

"While you're on the waiting list for a transplant, you're waiting for a call," he said. "I was going through the University of Maryland for my transplant surgery. They got (contact) information for my family, my friends, because once they get a match for you, they are on the phone."

That call came to Butler on March 19, 1995. He said he had just undergone dialysis and gone to work as supervisor of the evening shift at Frederick County Sheriff's Office Corrections Bureau at the Adult Detention Center when the telephone switchboard lit up.

"It was all my family and friends calling, saying, 'Hey, Mike, they're trying to get hold of you at the University of Maryland.' And my beeper was going off."

Doctors said they had found a closely matching donor for a kidney and a pancreas — five out of six criteria. They offered the opportunity to Butler. He could accept or decline.

"I said, 'I'm in. I'm on my way,'" he said.

The next couple hours were a blur for Butler. Doctors took an MRI, did blood work and prepped him for surgery.

"Next thing I know, my family's in there and the chaplain. And we're talking with the doctors with the staff. They say, 'It's time to go,' and we go down," Butler said. "I'm still under a little anesthesia, and I do remember getting down to the OR. And next thing I know —it just seemed like a couple minutes — I wake up, like eight hours later. Surrounded by family and friends, hooked up to everything."



Saying thanks

Butler stayed in the hospital for 10 days as doctors monitored him, adjusted his medications and made sure he could function all right.

But right from the start, Butler said he noticed a difference.

"The kidney and pancreas kicked right in after the surgery. The doctors came in and talked to me the following day and said everything went well," he said. "My family came down to see me. They could not get over how I looked. Before the transplant, I had yellowish skin and dark circles under the eyes. And I lost all this weight. Just didn't look good. Afterward, the dark circles were gone. The color in my skin — I looked like a new person. And I had all this energy. I was just dying to get out of that bed."

Butler said a month after his release from the hospital, he went back to work. He no longer needed dialysis. He no longer took insulin shots. He had more energy than he'd had in years. He felt great.

But he knew his gain came from someone else's loss. Organizations that arrange organ donations do not identify donors for privacy concerns. But they will send a letter from a recipient to the donor's family. So Butler wrote a letter.

"The whole time I was waiting, and especially waiting in the hospital, I wanted to know who my donor was," Butler said. "Pretty much my letter was 'I don't even know where to start to say thank you.'"

Butler hoped for a response from the family, letting him know who his donor was. But he heard nothing.

Finally, after a year, Butler received a letter from a woman in Washington state. The woman said her daughter, Kelly, was Butler's donor. Kelly died at age 27 of a brain aneurysm.

"Her mother said it was one of the hardest things she ever had to do, was to take her daughter off life support," Butler said. "But the doctors told her there was nothing they could do. And Kelly wanted to be an organ donor."

Butler said whenever he makes a presentation about organ donation, he praises his donor.

"I tell everyone, in all my speeches, I can never say thank you enough. Not only to the family but to Kelly," he said. "Not only did she save my life, but she saved at least seven others just by being an organ donor. People can make a difference. People can their legacy and be a hero. I've got a hero and an angel in Kelly."



Who can sign up?

The Donate Life Maryland registry allows Maryland residents who are at least 18 years of age to register their authorization to donate all or specific organs and tissues upon their death. Children between the ages of 13 and 17 can join the Donate Life Maryland registry, but until the designated donor is 18 years old, parents or a legal guardian will make the final decision about organ, eye and tissue donation at the appropriate time.

Young and elderly can be considered potential donors. No one should eliminate themselves as a donor because of age or pre-existing medical condition. Each potential organ, eye and tissue donor is evaluated on an individual basis for suitability

What organs and tissue can be donated?

Organ donation includes: heart, liver, kidneys, lungs, pancreas and small intestine.

Tissue donation includes: Corneas, eyes, skin, bone, tendons, ligaments, vessels and heart valves

To register as an organ donor or to get more information, go to www.donatelifemaryland.org.

In addition to online registrations, donors can sign up with the Donate Life Maryland registry when applying or renewing for a driver's license or ID card through the Maryland Department of Motor Vehicles (DMV).

If unable to sign up online or via the DMV, donors can sign a donor card to indicate your wishes. However, you should share your decision with your next of kin or health care proxy in case the donor card is not available at the time you become a candidate to actually donate.



Myths and misperceptions about organ donation

Natalie Benavides, executive director of Donate Life Maryland, said the idea of donating organs connects with people's emotional concerns and with beliefs about death and the afterlife.

"There are some reasonable concerns —  some people want to make sure it's consistent with their religious belief. Some people want an open-casket (funeral ceremony)," she said.

Mike Butler, who is the Western Maryland representative for Donate Life Maryland, said he has attended open-casket funerals of organ donors, even cornea donors and he couldn't tell.

"It's a myth that if you take corneas or if you take skin, you can't have an open casket," he said. "Because (transplant teams) do it with dignity and class, and they leave it to where you can't even notice."

Another myth, Benavides said, is that old or sick people can't donate organs.

"(Some people,) after they reach the age of 60, they deselect themselves," she said. "Maybe they think they're too old or they have a medical condition. But we have some donors who are 90 years old."

But the worst myth, Benavides said, is that care will be withheld from an organ donor in the hospital in order to facilitate donation. That is unethical and completely untrue, she said.

"(To be eligible to donate organs,) you must be a ventilated patient," she said. "What we try to emphasize to people is that donation doesn't even take place until after you're dead."

Butler received a donated kidney and pancreas in 1995 and now encourages other people to register as donors. He knows talking about organ donation brushes up against people's deepest feelings about death.

But he emphasizes how organ donation enriches life.

"This is not for everyone," he said. "But do the research and then make a decision about what you want to do."



By Colleen McGrath/Staff Photographer

Double-organ transplant recipient Mike Butler of Hagerstown is the Western Maryland representative for Donate Life Maryland.



File photo

Mike Butler of Hagerstown competed for Team USA at the 17th World Transplant Games in Australia in 2009. Butler received a kidney and pancreas transplant in 1995.