OBSERVER Photo by Gregory Bacon Nathaniel Barone had a kidney transplant and a pancreas transplant back in 2005 from two different donors, one a family member and one from a child who died. He encourages everyone to consider being an organ donor.

April is Donate Life month. It’s a special month for Nathaniel Barone because had it not been for two separate transplants 18 years ago — a kidney from a relative and a pancreas from a stranger’s family’s child — he would not be here today.

Barone is the chief public defender for Chautauqua County, a position he’s held since 2012. During the 1990s, he had been part of the Public Defender’s office, but left to work in private practice for more than a decade.

Barone is one of seven children. His father was a medical doctor and his mother took care of the family.

Barone had health issues ever since he was a child and was a type 1 diabetic. He had been on up to six injections a day. In 2004, he started getting really sick, constantly feeling nauseated, exhausted and putting on weight due to the retention of fluid.

In January 2005, Barone was working on a jury trial in Jamestown. “I was so sick, I would literally take breaks every half an hour to go into the bathroom and throw up,” he said.

By the end of the trial, Barone’s health continued to deteriorate. He remembers winning the trial, going out to his car and falling down. He drove over to his father’s house, who was actually struggling with cancer at that time.

Barone’s father told him to get to the emergency room right away. The weather was terrible, but Barone got one of his brothers to take him to Hamot in Erie. “We were stopping every 15 minutes in this snowstorm so I could open the door and throw up, that’s how bad it was,” he said.

By the time they got to Hamot Hospital, Barone’s blood pressure was through the roof. “They said to me, ‘You should be dead,'” he reflected.

During this time Barone was 46 years old and was a single father. Two of his sons were in college and his youngest was a student at Jamestown High School. In fact, the night Barone went to the hospital his youngest was in Lockport playing in a basketball game that Barone had planned on attending but couldn’t do to his health.

Hamot told Barone he needed to go on dialysis right away. They put him in emergency surgery where a stent was placed in his carotid artery.

He stayed in the hospital for a couple of weeks and started dialysis treatment. He had found out that his kidneys had shut down and he couldn’t excrete the toxins in his body.

The doctor told him he would be on dialysis for the rest of his life, unless he was able to get a kidney transplant.

So eventually he started receiving dialysis treatment at WCA Hospital in Jamestown. He went three times a week — Tuesday, Thursday and Saturday. He would have his treatment from 5 a.m. to 10 a.m. During this time, he continued to work. He actually brought his work with him to his treatments, thinking he could get some work done, but the treatments would wipe him out.

“It’s so exhausting, the procedure.” he said.

Not wanting to be on dialysis for the rest of his life, Barone decided he would seek a kidney. His siblings were tested and two were discovered to be a match — his younger sister and his younger brother, Brian. Doctors felt his brother would be the best match and planned to take one his kidneys.

The transplant surgery took place Aug. 11, 2005, at UPMC in Pittsburgh.

There were multiple hospital stays and follow-up procedures, but at this point Barone thought he made it. “I was on top of the world after the kidney transplant,” he said.

ANOTHER TRANSPLANT NEEDED

Over the next few weeks, there were still problems. Barone couldn’t maintain a level blood sugar. He went back to UPMC in Pittsburgh to figure out what was going on.

Apparently the insulin he continued to take and other medication were having a bad reaction. A doctor there told him that his only chance of survival was to get a full pancreas transplant.

And the news got worse.

The doctor said that in order to get a pancreas transplant, it would have to come from a deceased individual. Healthy people have two kidneys and can live with just one, but humans can’t donate their pancreas without dying themselves.

The second problem was that pancreas transplants were very rare. The average pancreas transplant patient only had a 30% chance of survival. (Survival rates and success rates are much higher today, according to the Scientific Registry of Transplant Recipients).

Third, even if the transplant was successful, Barone was told he probably would only live for another five or six years.

Barone went home and talked to his father about it. “He said, ‘Well, look at it, your choice is simple. You can’t survive with the way you’re going right now.'”

So Barone agreed to be put on a waiting list for a pancreas, thinking that a long shot of survival is better than no shot at all.

He thought he might be waiting months, if not years, for a pancreas and wondered if he would live long enough to get the surgery done. But after putting his name on the list, three days later he was informed there was a pancreas available.

The surgeon told Barone that a 7-year-old boy from Philadelphia had died in an asthmatic attack and his parents had agreed to allow their son’s organs to be harvested and given to others in need.

“This is the magnanimous gesture of two grieving parents,” he said.

So all of a sudden, Barone hops in a vehicle to Pittsburgh with one of his relatives, wondering if he’s going to die that day or be given new life. His mind was racing all over the place. “I’m thinking this is a mistake. Everything was happening so quick,” he said.

He even thought about his father. Barone’s dad had been struggling with cancer and was nearing the end of his life. “We were very close. I was thinking of him and the last thing I wanted was for me to die first when he didn’t have much longer,” Barone said.

It took about nine hours, but the surgery was successful. The preparation began on Oct 19 and was completed on Oct. 20, which was his father’s birthday.

Barone was told he died twice on the operating table, but each time they were able to bring him back.

After the surgery Barone found out he no longer had diabetes. “I haven’t taken any medicines, any insulin for any diabetes since that time, which is truly a miracle,” he said.

When Barone was a child, his father always believed that some day medical science would find a cure for diabetes. Well, he was cured, but not because of medication, but rather because he got a new pancreas.

Barone was able to go home around Thanksgiving in 2005, and his father passed away Dec. 5. One of the last conversations the two of them had was his father talking to him about his diabetes.

“He looked at me and said, ‘I told you, you were going to be cured of your diabetes. I just never expected it to be this way. What better birthday present could I have been given than that, as a father,'” Barone reflected.

Barone continues to get checkups but the doctors continue to be amazed at how long and how well he’s done post-surgery.

There are still challenges today. Barone’s body doesn’t fight illness like a healthy person. He’s 64 years old now and this fall will mark 18 years since his two lifesaving surgeries.

BEING AN ADVOCATE

Barone has three children himself. He’s amazed at the parents who lost their child to have the frame of mind to allow their son’s organs be donated. “For them to be able to see the bigger picture in all of it, I can’t even begin to understand how a person has the strength and courage to do that. To me, it would be so simple to be selfish and just get lost in your own grief,” he said.

Barone works with different organizations encouraging organ donation. “What people need to understand, is it’s really all about getting the word out and letting the communities know about the opportunities to save a life. Organ donation truly is a life-saving donation. I’m a walking example of it,” he said.

Barone also praises his brother for his willingness to donate a kidney. “More and more people need to know what organ donation really is about, not just as a deceased donor … but also living donations,” he said.

Today, Barone encourages everyone he knows to be willing to at least be a deceased donor, if not a living donor. It’s something he’s encouraged his friends, family and staff to consider.

“The need of an organ transplant spans the entire community, so it’s something that truly affects all of us,” he said.

To register to become an organ donor, go to donatelife.ny.gov

People can also sign up to become an organ donor when they register or re-register their driver’s license or when they register to vote. The state also recommends letting family members know of a decision, so they aren’t caught off guard in the event of a tragedy.