April is National Donate Life Month and one Warren County group has been providing an opportunity for residents to discuss the physical and emotional issues surrounding transplants for 15 years.
"Close to the Heart" Transplant Support Group helps those throughout the county to deal with the experience. Started in October 1999 by Debbie Sumner, the group gives emotional support to those who have received transplants and their family.
Sumner's son Josh had a double lung transplant. He lived with chronic lung disease and passed away while still a teen, she said.
Close to the heart
Close to the Heart members are pictured during a July 2013 picnic meeting. Pictured in the front row seated, from left, Rebecca Thomas, Ed Thomas, Rod Larson, Lora Bunting; second row, from left, Jim Uhrig, Barb Graziano, Lara Larson, Patch Baker, Alice Pedersen, Bob Bunting; third row, from left, Debbie Sumner, Joanne Miller, Ed Miller.
Speakers from the Center for Organ Recovery and Education meet with the group, Sumner said, and also educate the public about donations of organs and tissue.
"Transplants are more common than people think," Sumner said. "Quite a few in the county have had one."
Advances in technology allow for more procedures, Sumner said, but that number should still be higher. There are not enough donors, she said, and people die every day while waiting.
For those who would like to donate, Sumner said the most important thing is to sign a donor card. Also, she said talking with family about the decision will prevent any surprises to them.
"We encourage all, despite age or illness to consider becoming an organ donor. It is very important that you share that decision with your family. Health and donor appropriateness will be considered at the time that a person is considered a donor," she said. "We currently have members from Warren and Erie County as well as from New York State. We welcome any persons, regardless of their place of residence who are interested in meeting others who have been touched by the transplant or donation process. We even have a couple members who have received live donor organs and several are 20+ years post-transplant!"
Rodney Larson is a dual organ transplant recipient and a juvenile diabetic from the age of 14. In October 2007 he was told he would be on dialysis within one to five years. In 2008 his kidneys started failing quicker than expected and he opted to receive home peritoneal dialysis which included surgery in June 2008 to install a PD catheter.
There were troubles with the treatment - the PD machine malfunctioned, supplies were difficult to store, not all of the solution drained out of him; and traveling was difficult.
"I also had medical issues that I wasn't prepared for," he said. "The insulin that I was receiving to treat diabetes was metabolized by the kidneys and as they deteriorated I began having life-threatening hypoglycemic incidents. I also had anemia, extreme fatigue, occasional nausea, and trouble remembering."
Larson is lucky to have only waiting 18-months for his transplant, he said. The tests and interviews required for the transplants "seemed like they would never end," he said.
He did get a few calls for a kidney only, but because he was eligible for a kidney and pancreas that would end his diabetes, he held out.
"On Oct. 21, 2009 I was contacted by my transplant coordinator while I was in Erie, Pa for a routine dialysis checkup and offered a cadaverous kidney and pancreas transplant," he said. "I said, "Yes!", and they told me to be at UPMC in Pittsburgh by 7 p.m."
Larson called his wife who left work, grabbed their ready bags and picked him up in Erie. A long day of registration followed but he was eventually brought into surgery.
"I woke up the next day in ICU not knowing if the transplant happened and unable to move. Soon I learned that I had been transplanted, and that I was restrained so I wouldn't pull the breathing tube out," he said. "I received good care, and I walked out of the hospital a week later feeling like a new person and wondering what my future held."
Since his transplant surgery in 2009, Larson has gone on to celebrate his 50th birthday, has enjoyed attending family functions, and is once again in the Lander Volunteer Fire Department where he has been a member for 30 years.
"Most of all I'm enjoying being alive," he said.
There have been some setbacks after the transplant - lots of blood tests and IV treatments to prevent rejections and some side effects from medicine.
"Two things that I didn't expect were how people act when they find out I've had a dual organ transplant and how little they know about what the organs do," Larson said.
"I'd like to say thank you for all the help that I received from my dialysis nurse, local and UPMC physicians and nurses, fellow local emergency responders, Lander VFD, who held a wood-cutting bee for me, Russell Lions Club, my friends and family, but most of all my wife. Without their help I would not be alive today. I can never thank my donor's family enough. They lost a loved one, but they saved my life, so many other's lives through their selfless generosity."
Joanne Miller's life changed on Thursday, April 16 at 3:20 a.m.
"We have a liver for you."
Miller thought about the last four years since her diagnosis of Primary Biliary Cirrhosis for which there's no known cause or cure on the 40 minute drive to the Cleveland Clinic.
Miller and her husband had many questions, some of which had no answers. They felt it was imperative to find some answers before sharing with their family and friends.
"If we had questions, we knew they surely would also," she said. "The liver transplant support group proved to be a valuable asset. Meeting others in similar situations, pre and post transplant was so helpful to us. Sharing their experiences and ours, and learning the latest medical facts made acceptance easier."
Placing Miller on the transplant list was determined necessary just nine months earlier. She feared she wouldn't medically qualify.
"After all, I had a life-threatening disease; what else might they find that would prevent a transplant?," she said. "It was a very long week waiting to hear those precious words "You're on the list.""
Miller's surgery was a success and said with "God's blessing, the superior care of The Cleveland Clinic staff and the love and support of my family and friends, I began to heal."
"Their love carried me through difficult days and I will always be grateful," she said. "As I recovered from the surgery, I truly began to understand the magnitude of such a generous gift. It was very emotional knowing that somewhere a family was grieving for the loss of their loved one. By being an organ donor, that unknown man gave me a chance to live and it is with a sincere and grateful heart that I continue to keep him in my prayers."
After she recovered, Miller and her husband wanted to be part of the transplant program. They joined the Cleveland Clinic Ambassadors where they visited patients in the hospital and met people who were as uncertain and frightened as they had been. They also joined the Steven Minister Program at their church.
"They and their loved ones needed to talk with someone who understood their situation. Their smiles were our reward," she said.
The Millers were pleased to learn about the Close To The Heart support group, started by Debbie Sumner.
"Mine is a success story and it is successful because a man loved and cared enough about his fellow man to give of himself even after death," she said. "I pray that someday all men and women will feel this love for once another, and that all those in need of transplants will have their second chance at life as I did more than 21 years ago on April 16, 1992. May God bless him and all organ donors."