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In my early church years we sang a song that starts like this: "Love isn't love 'till you give it away..."
A Canton Local woman put an interesting twist on that thought. She did not give her love away just in the form of time or money. She gave away a kidney for someone she loves, her brother.
All of his younger life Nathan Guilliouma had tagged along with his sister, Jeannette, who saw herself as a second mother, being 12 years older. In 1997, when Nathan came down with an aggressive case of Lupus at age 15, she was determined to do whatever she could to help him have a normal life.
Now 30 years old, Nathan, a 2001 South graduate, has been through more medical procedures than most people will experience in a lifetime. Conventional treatment such as chemotherapy did not bring his lupus under control. Finally a trip to Chicago to become a patient of Dr. Ann Traynor, earned him the notoriety of being the sixth person in the world to receive a stem cell transplant for lupus. That procedure put the disease into remission, where it has stayed since, but unfortunately, the disease had done irreversible damage to his kidneys.
No one in his family wanted Nathan to live the rest of his life dependent on kidney dialysis. His family members were tested to determine if they could give him one of their kidneys. Nathan's older brother, Harvey, was the only sibling determined to be a match for a transplant but it was then discovered Harvey has inactive Lupus and was disqualified from giving to the cause. Nathan's father, also named Harvey, had diabetes which disqualified him. Older sister, Rebecca, was not eligible either. Many other family members and friends were tested finding no appropriate match, so Nathan continued on dialysis.
While dealing with the stress of this situation, the Guilliouma family was shaken in 2001 when their patriarch, Harvey Sr., was taken at age 58 with a massive coronary. What he desperately wanted to do in life, he did in death. The grief-stricken family was overwhelmed with comfort when they were informed shortly after his passing, that because of Harvey's cornea donation, two people were given sight. "He wanted so badly to help Nathan and couldn't because of the diabetes, but at least he could help some other people. Knowing that helped a lot," said Nathan's mother, Liz Guilliouma.
The challenges continued and in 2003 Nathan developed a serious skin condition because he was injected with dye in preparation for an MRI. This is acceptable for most people but dialysis patients are not able to rid their bodies of this dye and it causes considerable skin damage. Unfortunately he still battles the effects of that mistake.
Being on a cadaver donation list paid off in 2005 when he received a kidney from a deceased 29-year- old man from Nebraska. The transplant took place in Massachusetts. Liz vividly remembers getting the call. "We had to drop everything and get there now." Unfortunately that kidney failed after just five and a half years. So once again Nathan found himself on dialysis.
Desperate to help her brother, Jeanette (Guilliouma) McKelley discovered the Incompatible Paired Kidney Exchange Program at Johns Hopkins Hospital in Baltimore. This program creates a kidney bank from willing folks deemed healthy to receive and to donate. Jeannette was accepted into the program to give a kidney but when Nathan was tested to receive the organ, it was discovered that he had serious heart problems and soon found himself in surgery for a quadruple by-pass.
After the cardiac rehabilitation, he was then accepted to be on the list to find a compatible kidney donor. On Sept. 28, 2011, he was given a kidney from a live donor named Liz Cromer, who joined the program because her husband was in need of a kidney. Her organ was not compatible to her husband, but she was willing to give to Nathan-- so that in return, her husband could receive a kidney he needed from someone else.
The final move of the organ swap took place this past Oct. 31, as a match was found for Jeannette's kidney. A 38 year-old father of two was given her left kidney in a Baltimore hospital, just as the effects of Hurricane Sandy moved through that region. Nathan sat by her side through it all, because she had been there for him so many times when the roles were reversed.
It was hard being away from her immediate family for two weeks, but via Facebook she was able to watch her daughter's solo in the Walker Elementary School fourth-grade program the same day as the surgery. She also followed the presidential election results from Baltimore.
After the surgery, knowing she had helped Nathan as well as someone else was very gratifying but Jeannette was not prepared for the wave of emotion that hit her when she received an e-mail from the kidney recipient's 14 year-old son thanking her for saving his dad's life. During her stay in Charm City, she spent some time with the donor recipient and his family. They are all now Facebook friends and jest about their polar opposite political views.
The 1988 Canton South graduate was uncomfortable from the laparoscopic surgery for a few weeks, but since then she has had absolutely no pain, negative ramifications or regrets. Her husband Matt and her children Alex, Sammy and Maddie have all been very supportive of her efforts to help Nathan. Alex said of her mother, "I am very proud of her. I knew (donating a kidney) was the right thing to do."
Since the surgery to receive the second kidney, Nathan has had considerable physical improvement. He has tried very hard to maintain a positive attitude through all the difficult situations. Being a man of few words, he sums up this experience by saying he has learned "to never give up, there is always hope and it could always be worse."
The Guilliouma family strongly encourages organ donation and is very thankful for the tremendous support of the local community and to the Paired Kidney Exchange Program.
Tesa, I wanted to tell you, that you did a remarkable story about organ donations. This really means alot to us, and formost to try to get more people to understand what this is all about. I know there has been some pros and cons about this, but people really need to understand that being an organ donor, can save many lives and yet to be able to give a kidney. You just never know, until you walked in their shoes. Again, thank you from the bottom of my heart. Yours Sincerely, Elizabeth and Nathan Guilliouma