A Tale of Hope by Brian Mansfield

Brian Mansfield

Brian Mansfield, Awardee of the 2014-2015 Benjamin R. Chirls Scholarship

Like most people I have heard of organ and tissue donation, but never really knew much about it. I knew the concept, but never understood how great of an impact it had on peoples’ lives. However, that all changed in December 2012, when at the age of 16 I found myself in need of a cornea donor in hopes of saving my vision in my left eye.

At the end of my sophomore year everything was going great. I was playing lacrosse, doing well in school, having fun with my friends, and being a kid, but then everything changed in the blink of an eye. In May 2012, I contracted Acanthamoeba Keratitis in my left eye. It is a very rare and serious eye disease that affects only one in two million, and can lead to blindness or loss of an eye. In my case, I suffered from vision loss, excessive tearing, swelling, pain, eye spasms, and light sensitivity so severe I couldn’t even tolerate the light from a cell phone. I had to stop all my activities, including school because of these symptoms. Over the summer I was restricted to a pitch black basement due to the light sensitivity, while at the same time undergoing numerous different treatments, and visiting the doctor’s office three times a week in New York City as I needed to be closely monitored. My condition only worsened and despite suffering from these symptoms I attempted to go back to school the following fall for my junior year.

School was very difficult as I faced numerous challenges because of my condition. I couldn’t look at the board, was still in constant pain, and was frequently absent due to my illness, which led me to be fall behind and play catch up in class. I was able to push through these obstacles until November when I had to stop going to school as I underwent an unsuccessful experimental surgery called Collagen Cross Linking. The surgery worsened my condition and I required an emergency corneal transplant or risk losing my left eye. The transplant was initially successful and my doctors were optimistic, until I started to experience unexplainable and unexpected complications two weeks after the surgery. My symptoms returned, and I was again relegated to the pitch black basement. Miraculously my condition started improving in March, and despite still suffering from severe light sensitivity I requested home instruction.

Through it all, school was always a top priority for me, and despite all these challenges, I finished my junior year on time while receiving straight A’s. I continued to improve over the next several months, and eventually the light sensitivity improved enough to the point where only natural light bothered my eye, and I am now only suffering from swelling in my eyelid. I did go back to school this fall for my senior year, but am limited in my activities due to the stitches that are in my eye. I can no longer play sports, swim, or do pretty much any other physical activity, until the stitches are removed, but my doctors plan on keeping them in indefinitely.

My doctors are also considering another surgery in December to resolve the remaining symptoms. I am however much better than I was 2 years ago, and am looking forward to attending the University of Richmond next fall.

My involvement with NJ Sharing Network began about six months after my transplant when my complications subsided enough to allow me to leave the house, and I was able to participate in my first SK event along with my family. It was a very emotional experience for all of us, especially for me. During the walk I met families that donated the organs of their loves ones and was inspired by their stories and how much joy it brought them to know that they were helping others and honoring the memories of their loved ones. Also, when I walked with donor recipients like myself, I also realized that I wasn’t alone and was now bonded with so many people who shared my experience. Recently, I completed my orientation and training to serve as a Volunteer Ambassador for NJ Sharing Network.

I understand how important it is to raise money and participate in SK events and various fundraisers, but due to the shortage of organ and tissue donors, I feel that awareness is just as important, perhaps even more so. That is why I feel that the best way that I can help is to increase donor awareness by being a “Walking Advertisement ” for this worthy cause, which is so very important to me and to so many others. I feel that most people don’t fully understand this cause until they make a personal connection with someone who has experienced it, whether it be a family member, or a complete stranger. That’s why I am committed to share my story with others to make a personal connection with as many people as I can to inform them about organ and tissue donor awareness.

When I was finally able to return to high school this year, I feel that I opened the eyes of so many students and teachers about donating their organs and tissue to help save or improve the life of someone. Now, as I am beginning college in the fall, I have a whole new group of people that I can make inspire to become donors. As I said, being a
“Walking Advertisement’ ‘ is a commitment that I can continue throughout my life time.

I cannot think of a better way to educate others and hopefully, increase the number of donors which improve and save the lives of many people. Currently, there are approximately 5,000 NJ residents and more than 120,000 overall on waiting lists. I was given a very generous gift in my donor cornea and want as many people as possible to have the same opportunity for a second chance. I feel that it is not only my duty, but my privilege to spread the word about organ and tissue donation. I know that I can make a difference and that is what I plan to do.

A Tale of Hope by Ron Oswick

I truly believe that fate brought my girlfriend, Tanya, and I together. We met four years ago, while we both worked at Morgan Stanley. It was then that I noticed the scar on Tanya’s chest. What Tanya later told me about the scar left me in disbelief.

Ron Oswick, Tanya Piccini

Ron and Tanya

Tanya had received a life-saving heart transplant. After suffering from a stroke at the age of 11, she was diagnosed with Restrictive Cardiomyopathy. After the stroke, Tanya was hospitalized for three months before her family was notified that a heart had become available. She had the transplant surgery shortly after at Columbia Presbyterian in New York City. Nineteen years later, she is doing well; she recently started a career in nursing, a life-long dream, at Mount Sinai Beth Israel in New York.

Since the beginning of our relationship, Tanya and I have participated in NJ Sharing Network’s Annual 5K Walk & USATF Certified Race every year as a way to celebrate her second chance at life and give hope to all those who continue to wait for a life-saving organ transplant.

I’m emotionally hooked. I’ve never really thought about organ donation much before I met Tanya. If it weren’t for someone donating a heart 19 years ago, I wouldn’t have the love of my life today.

A Tale of Hope by Tracey Amadi

The love and generosity of my son gave me a second chance at life.

Before my transplant, I suffered from kidney cancer and had to have my right kidney removed. After going through dialysis for five years, being in the hospital 14 times within 18 months and having my gallbladder removed, I was extremely worn out.

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Tracey and her son, Emmanuel

When my son, Emmanuel, first made the selfless suggestion of giving me his kidney, I declined it. I know how scared he is of needles and I wasn’t sure if my condition was hereditary. The last thing I wanted to do was put my son in danger.

I received a lot of false alarms of being “next in line” for a kidney. At this point, I couldn’t take it any longer. Emmanuel got tested and it turned out we weren’t a match. However, the paired kidney exchange program matches one incompatible donor/recipient pair to another in the same situation.

Four months later, Emmanuel and I went through the transplant process. I celebrated my one year anniversary of a new life on May 21, 2014. I am doing well and so is Emmanuel.

I recently became a volunteer with NJ Sharing Network. I feel it’s crucial to do so because I was so grateful; helping raise organ donation awareness is just one small way for me to give back.

I am also starting a non-profit organization, We Are Our Brother’s Keeper, which will spread education and awareness about organ donation to minorities. I recently held a luncheon gala to bring awareness to organ donation, celebrate the gift of life and share my journey with others.

I am now more driven to make people aware of organ donation and the exchange program.

A Tale of Hope by Sarah Meyers

I was born with a rare liver disease called Biliary Atresia, a condition in which there is a blockage in the tubes, or ducts, that carry bile from the liver to the gallbladder. Untreated, this disease can be fatal. So, as an infant, I underwent a Kasai procedure, which surgically bypassed my blocked ducts in order to prevent liver damage.

This procedure bought me a lot of time. Thirteen years, specifically. Thirteen years filled with regular child-like things such as play-dates with friends, summers spent at the local private swim club, the participation in activities such as dance, gymnastics, theatre, and tennis, and even vacations to places such as Disney World. There was nothing abnormal about my childhood besides the occasional doctor’s appointment, blood work, and having to take a few pills every day. But then again, every child has to go to the doctor, occasionally get blood work, and take medicine at some point whether it be to help cure a simple cold, or for more serious matters such as mine.

Things were going rather smoothly until a minor bump in the road during my year as a fifth grader. I ended up getting hospitalized for an unknown reason until it was determined that I had cholangitis. After just a few days in the Morristown Memorial Children’s Hospital, I regained my health and strength and was discharged.

Two years later, as a seventh grader, I was re-hospitalized for the same infection. I happily missed a couple of days of school, however, it was concluded that my health had taken a turn for the worst, and that things were only looking down from there. It was time we get a move on it and start investigating transplant centers.

Sarah Meyers

Sarah with her parents, Steve and Lisa Meyers

At the time of my transplant there were no pediatric liver transplant facilities in the state of New Jersey, so my family was forced to search elsewhere. At first, my family and I went to Mount Sinai Hospital in NYC, but after learning that the wait time for organs was much longer in the tri-state area, and that a split-liver or living donor would likely become one of the few options, my parents started researching other centers. They found that Jackson Memorial Hospital in Miami, Florida had an exceptional program and so we traveled down South for an evaluation. It was then determined that I was a prime candidate for a liver transplant, and I was quickly added to the overwhelmingly large UNOS waitlist.

One short month later we received a phone call. I was eating my strawberry-flavored Special K cereal in the kitchen, preparing for one of my final days of seventh grade. My mom answered the phone. It was one of the transplant coordinators on the other line. They had a match for me. She instructed us to hop on a plane as soon as possible.

I knew it was for the best, but it had only been one month and I couldn’t have yet been prepared for this major surgery. I needed more time, and I secretly hoped that the donor wouldn’t be a match. But, knowing that we had to travel to Miami, I ran upstairs to get my pre-packed bag that I had put together in anticipation for this day. My mom, dad, and I were on a Continental Airlines flight to Miami, Florida within the next two hours.

Well, it was a match, and just a few hours later, I was in a hospital gown, sitting on the phone with my best friend while my family surrounded me. A transport nurse came in and told me it was time. I told my friend I had to go and that I’d talk to her later and hung up. What else was I supposed to say?

In the pre-op room, I was surrounded by my mom, dad, and grandmother. Soon enough, the anesthesiologist came out and told me it was time to say goodbye for now and that he’d take me into the operating room. I received a hug and a kiss from each family member, and waved goodbye, half-smiling, unsure of what other expression to give. I didn’t want them to think that I was scared. I had to be brave, for them. They had enough to deal with.

The anesthesiologist injected a calming medication into my IV. It was the first of many to make me feel like I was flying. But I still felt nervous, so he injected a bit more. I felt calm now, as calm as I could feel given the situation. I highly doubt that anyone has ever gone into an organ transplant totally Zen, but hey, if you have, then good for you! The anesthesiologist talked to me about school and his kids as he tried to sway my attention from the impending surgery.

As I was rolled into the OR, I was surrounded by several people who would be assisting with the surgery. I had complete faith in them all, especially my incredible surgeon, Dr. Kato, however, that didn’t mean that I wasn’t still scared. You never know what could happen in an operating room.

I was transferred from my rolling bed onto the warm operating table. It was a hard, flat surface, however, the heat made it mildly inviting. I glanced up at the fluorescent lights above and my mind went totally blank. Then, as the anesthesiologist allowed a steady stream of anesthesia flow into my veins, I decided to play the game I always play when I get put under. I tried to fight the anesthesia and see how long I could last. But it was only a couple of seconds and I was out like a light.

Six hours later I woke up in the ICU with several IVs and a tube down my nose. None of this was comfortable, but I was still delusional enough to not let it bother me. Soon, my parents returned to the room and were thrilled to see me awake and well.

I spent two days in the ICU until I was transferred up onto the regular transplant floor. Now, I thought the nurses in the ICU were tough, but the ones upstairs were hardcore and would not let me get away with just lying around all day long. They wanted me up and walking, practicing my breathing with this mechanism they had given me, and going to the bathroom normally. I couldn’t get away with anything.

Honestly, my biggest concern post-surgery was getting the darn tube out of my nose. I think I asked the nurses about it almost every time they came in. I’m not a persistent person like that, but I wanted this tube out.

Eventually the tube was removed, my breathing got stronger, and I was walking in circles around the transplant floor like it was my job. After a few weeks, I was discharged and got to live in an apartment in Miami with my family until I was permitted to fly home. Not a bad deal, huh?

Approximately three months post-transplant, I was told that I could return home. Once back in New Jersey, I began home-schooling until I was strong enough to return to school.

My transplant has taught me to be grateful for the life that I have, and not to take it for granted.

All I know about my donor is that he was a nine-year-old boy from Louisiana.  I’ve struggled with this fact for a long time. Wondering what makes me more worthy of life than he, but I’ve realized that I cannot think that way. Instead, I’ve realized that I must be thankful for my second chance, and to make something of myself. I want to be able to honor the young boy who passed and whose organ I received by living a long, fulfilling life. I want to be enough for the both of us. Not only must I live for myself, but I must live for him as well. His death will never be left in vain, for he saved the lives of many, and has given me the ability to live on and keep his memory alive. I truly believe that this boy lives on within me.

A Tale of Hope By Julie Nelson

The diagnosis came as a surprise. My father, Jim Rhatican, would need a liver transplant to live. Those were certainly tough words to absorb. Other than checking the box on my driver’s license since I was 17, I knew little about donating organs. Was this something people do? I prayed and prayed that people far more educated than I on this topic were out there and one of them would literally save my father’s life.

Team Rhat Pack

Team Rhat Pack at the 2013 NJ Sharing Network 5K

This feeling, of course, came with extreme guilt knowing that there were people who would have to lose a loved one, someone near and dear to them, in order to save my father’s life.

During my father’s difficult journey waiting for his transplant, my husband and I learned we were expecting our first baby and we bought our first home. I knew there was no way that my father would miss out on the chance to create new memories with his growing family.

We waited.

Christmas 2008 came and we cherished every second not knowing if we would have the chance to celebrate together the following year. Saying goodnight had never been so difficult. It was 12 hours later that he received that AMAZING call. Our real gift had come; an angel was giving my father the gift of life and giving our family the gift of the future.

Five years later…we are thankful and grateful every single day for the decision made by the family who lost their loved one and CHOSE to save our loved one’s life. We know it had to be the most difficult decision made during the most difficult time. But we could not be more appreciative. My father has seen his family grow from four grandchildren to eight! He has spent days on the beach with his family, he has seen his grandson play baseball, he has gone to dance recitals and spring concerts, and he has read to his grandchildren’s classes and has honored his weekly Pink Donut Day tradition! He has hugged his children and kissed his wife.

WE thank our angel every day for the memories we are blessed to create. My father has become involved with the organization that helped to save his life. He educates others by speaking on behalf of NJ Sharing Network about the importance of organ donation. He meets donor families and recipients and guides others through their journey. We, Team Rhat Pack, participate in NJ Sharing Network’s 5K as a celebration of Jim Rhatican’s life and as a THANK YOU to all those who have given the gift of life!

A Tale of Hope By Kathy Farrell

On Saturday, Oct. 27, 2007, at 9:20 p.m., the call came from Rowan University.

“Mrs. Farrell?” the officer said.” Your son Donnie has been assaulted. The ambulance is taking him now to Cooper University Medical Center in Camden. You need to come.”

Fueled with fear, minds in a fog, my husband and I headed to Camden. Two and a half hours later, our car pulls past the police cars lining the emergency room.

My husband, Donald, and I are ushered in and quickly swept away from Donnie’s girlfriend, but not before she says, “Donnie is out of surgery.”

I dropped to my knees to kiss the ground in thanks, only to be immediately picked up by an aide. “The doctors want to speak with you.”

We are led toward a small room near the trauma intensive care unit. My brain is screaming, “Oh no…not the little room…please don’t take us to the little room.”

Kathy Farrell

Kathy Farrell speaking at Morristown Medical Center about her son, Donnie

His brain has suffered extreme damage. Prognosis grave. My husband and I were escorted into thetrauma ICU and brought to our son’s bedside. My beautiful boy. Lying there. Eyes closed. Unresponsive. Tubes, buzzers, people scurrying. How could this be?

Donald James Farrell III, the second oldest of my four children, was pronounced dead at 1:13 p.m. on Sunday afternoon.

How do you live after the murder of your precious child?

My survival from then until today was, and is, nurtured by many. Believe me; I did NOT want to survive. Every bone and every muscle in my body ached to be where my son was. But that was not fair to my other three wonderful children who I adore. It is the love of family, support of friends, care of a neighborhood, and the generosity of strangers which supports my survival.

For me to survive is to believe that God is there every step of the way. Every day that my eyes open in the morning, I pray for the strength, faith, and courage, to get through another day without my boy. I’m also strengthened by my boy’s gift of life to others. His liver, kidneys, and heart valves were donated so others could have a second chance at life.

Today, I have an awareness that I was in the throes of the fires of hell. To make it through, I must focus on the other side. Keep moving. I have to keep moving, face forward, step by step, to avoid getting stuck in the middle. If that were to happen, that I had gotten stuck, which would be very easy to do, I would not have survived. I would have been swallowed up and would have succumbed to the flames. The road that my life is taking me on now is an adventurous one. My oldest child is to be married in one month. My ‘easy button’ child is prospering. My youngest son is now moving off to college in North Carolina.

And guess what….I smile a lot at my job!

A Tale of Hope By Sharon Lupo

I started having stomach pains when I was 46-years-old. I brushed it off as a case of too much pre-holiday indulgence. But the pain persisted, landing me in the local emergency room. Many tests, scans, and biopsies later, I was shocked to learn the source of my pain: an extremely rare type of liver cancer. This type of cancer affects the lining of the blood vessels within the liver and strikes only 200 to 300 Americans each year.

Because of the nature of this rare cancer, my entire liver was not affected, and therefore my MELD score – the criteria by which priority for liver transplantation is determined – was low. That meant I was unlikely to receive an organ from the national organ waitlist any time soon. Yet ironically, waiting meant that the cancer could spread beyond the liver, which would disqualify me from eligibility for transplantation.

Sharon Lupo

Sharon Lupo with her brother, Mark Miller

I knew that living donor transplantation was a potential option, but I did not ask anyone in my family to consider it. I remained on the extended criteria waitlist, all the while undergoing frequent scans and injections of chemotherapy. I also underwent lung surgery to remove several cancerous tumors during this time, completely unrelated tumors detected during one of my many PET scans.

After the third of the chemotherapy injections, my liver suddenly began to fail. I was in excruciating pain, I couldn’t eat, and I was losing weight.

My brother, Mark, called after learning of my situation. Having been out of touch with him for some time, I was utterly floored that he wanted to donate part of his liver.

The surgeries occurred in October.

“The first few days after the operation were the most difficult of the recovery,” Mark says; noting he was well enough to leave the hospital; only a month later, he was back to work.

Mark attributes the speed of his recovery to the fact that he was fully at peace with his decision to donate. To future donors, he advises preparing oneself both physically and psychologically for the surgery. Being mentally comfortable with the decision, he says, will make the surgery easier to undergo, and the recovery much smoother.

My recovery took longer, but today I am cancer-free, back at work, enjoying my family, and very grateful to be alive.

This taught me to live in the moment and enjoy every day. I am completely grateful to Mark for saving my life. It takes a really special, selfless person to do what he did.