Second Chance Blog

 

The “Right Turn” That Saved My Life

October 14th, 2017

This is a blog post submitted to Gift of Life by heart recipient, Wanda Griffith.

I am somebody, but part of me is somebody else and for that somebody, I am eternally grateful… Let’s think about that for a moment, a complete stranger, in the worst moments, made a decision to save somebody and that somebody is typing this today to tell her story.

Organ donation has saved my life and has directly affected the lives of those around me. Today, I want to tell you about my transplant journey as a heart recipient.

More than 20 years ago on October 24th I came to a literal crossroads that would determine my destiny.

In the weeks leading up to the night of October 23rd I was tired, light headed and having severe dizzy spells.  As any other working mother of a toddler I was quick to blame the fatigue on my everyday routine.  I was too worried about what my then 18 month old daughter needed and what I needed to do to provide for her. I was too worried about the needs of a professional life and the expectations of my job and clearly not listening to my body and focusing on what I needed.

The night of Oct 23rd, 1995, I didn’t sleep. I was having trouble lying flat and couldn’t breathe. As if I hadn’t slept all night I was still up at the crack of dawn getting my daughter ready for daycare and myself ready for a day at the office. After dropping my daughter off, I came to my literal crossroads. Knowing I wasn’t feeling well, while sitting at a traffic light, my thoughts were that if I turned right it would take me to the hospital and turning left to the office I turned right that day and drove myself to the emergency room.

As they examined me and brought in the specialists, I was found to be in Congestive Heart Failure, had I turned left…. I wouldn’t be here to tell my story. Turning right began my journey to transplant, 3 weeks before my 30th birthday.

For the next 15 years I lived with many limitations in my diet and everyday living. I took many medications to keep my heart stable. I couldn’t walk more than 100 feet without rest. I was tired beyond any tired I could have imagined. Though limited, I never let my limitations be evident to those around me. I pushed with positivity. I had to for my daughter. I wanted to see her grow up.

As my daughter grew, I was able to share in all of her milestones. I never missed a concert or game she participated in. I worked full time and built a good life for us. Behind the smile I was tired, but pushed for her sake.

I knew that transplant was my cure from the day I was diagnosed with heart disease. I knew I wasn’t sick enough to be on the list but knew it the day was coming all too fast as well. On October 24th, 2010, 15 years to the day of my right turn, I collapsed, which lead to the discussion of transplant. It was time.

On my 45th birthday I started my transplant journey. My Social Worker sang “Happy Birthday” to me before she began her routine of the transplant evaluation process. I was listed in late November and transplanted in December just 20 days later. I was fortunate enough to wait at home surrounded by family. My mother and father had moved in to help. I wanted my daughter to enjoy her senior year of high school and not worry about the care I may need while waiting.  I had in-home nursing visits and kept that smile for my daughter’s sake.

The call came at 5:30 a.m. We rushed around like a new mom, waking everyone. The news of a match was met with every emotion that morning. When we arrived at the hospital it was like a whirlwind of activity. I was: anxious but ready, scared but hopeful, sorrowful but grateful, all at the same time.

I understood what needed to happen for this day to arrive but still felt a sense of mourning, guilt and peace all at the same time. It is still hard to explain. I was prepped and ready. I went to sleep knowing I would see my daughter graduate from high school, I would see my parents grow old, and I could continue the hope of one day meeting my son.

Ten days later I was discharged from the hospital, with a grateful heart and lots and lots of medication!  I visit my heart team (what I like to call “OZ”) every 6 months for a checkup. I undergo extensive testing yearly to ensure the rest of me is keeping up with the new heart.

All in all, I am healthy. I take my meds every 12 hours. I try to eat right and exercise regularly.  In the time since transplant I have been living life. I have celebrated my daughter graduating from high school. I have seen her off to college. I have married my high school sweetheart, who supports me in everything I do. I gained wonderful step son. I am back to work full time in a job that I love. I have met and have a relationship with my son (a son that I gave up for adoption 29 years ago). I have met and have a relationship with my 3 beautiful grandchildren whom I never knew existed. I have celebrated my nephews graduating high school. I have celebrated my parents’ 50th wedding anniversary. I have traveled with my family. I have celebrated the birth of a new nephew. I have been a part of my daughter getting engaged to the man of her dreams. I get to plan a wedding with her I get to love more grandbabies. I get to grow old with my family.

I am grateful beyond words for the selfless gift that allows me to continue my life journey. A decision was made in the moments of despair that changed mine and my family’s lives forever. I like to think my donor and donor family also made a right hand turn when at the crossroads of life, by making the decision to be an organ donor thus syncing us forever.

I pray for my donor family daily and live life as if they are watching. I believe I am here to serve a purpose and for now that purpose is to share my story and hopefully convince others to take the same “right” turn and check the box to be an organ donor.

“In Sickness and In Health” Husband Donates 40 Percent of Liver to Save His Wife’s Life

September 18th, 2017

“My whole world just came crashing down,” said Karen Rudolfi of Clarks Summit, PA. “You don’t realize how much people rely on donors until you need one.”

After battling Sarcoidosis in her lungs and liver for 16 years, Karen’s condition had become unstable. Her declining health came to a head after she began to turn jaundice and was experiencing episodes of nausea, bringing her to consult a gastroenterologist. Testing revealed the severity of Karen’s condition and she was told the only treatment would be to receive a life-saving liver transplant.

Karen met up with a team at Hershey Medical Center to begin the process of qualifying for a transplant and finding a donor. Doctors suggested Karen find a living donor to avoid the wait of the national transplant waiting list, which could take over a year.

“When we first met with the team we wanted the procedure done in May,” Karen said, explaining how they wanted the transplant to fit her work schedule as a teacher. “The doctors told me it didn’t work like that.”

The process to become a living donor is not as simple as selecting a volunteer to donate his or her liver. The testing process to identify a match is lengthy and can take multiple tries. Karen’s first thought of who may be a match was to ask one of her sisters to be tested, as blood relatives are often more likely to be matches for a successful transplant. Karen’s husband, Gary Rudolfi, had a different plan.

“The doctors didn’t think Gary would be a match,” Karen said, but the result defied their expectations. “My husband was the first and only one tested.”

Hershey Medical staff did their best to keep the couple informed, explaining the transplant and recovery procedure for both recipient and living donor. Their family members rallied with support, helping Karen and Gary in any way possible and even holding a benefit at the local fire hall to show their support.

Karen and Gary’s surgery dates were set, ironically, for May. Karen remembers the doctor tapping her on the leg as she was rolled into the operating room saying, “Well I guess you are having it done in May,” recalling her original request.

“My husband went above and beyond for me that day,” Karen said. “I remember laying in the ICU and thinking about how people stress over little, unnecessary things. Everything we do matters, every day is a gift.”

Gary was able to donate 40 percent of his liver to his wife in a successful transplant. However, post-transplant, the couple was met with another challenge. Both required some recovery time to return to their best health. Their families made this process as easy as possible, so that Karen and Gary could focus on their recovery and quickly return to a normal, healthy life for the fall and beginning of the new school year. Gary was released before Karen and was assisted by his sister and a home care nurse. Karen continued her recovery at Hershey Medical and was frequently visited by friends. Their house and meals were taken care of by their family members and their nephew took care of the lawn work. The community overwhelmed them with support.

Five years later, both Karen and Gary are living strong, healthy lives thanks to Gary’s sacrifice, their Hershey Medical team, and countless friend and family supporters.

“My team was my angels,” Karen said about her doctors and nurses at Hershey Medical.  “I feel blessed to be able to share my story and I thank God every night. Every day is a gift; this was truly ‘A Gift of Life’.”

Ad in Church Newsletter Inspires Lehigh Valley Woman to Save the Life of a Stranger

August 28th, 2017

Jo Ann Coles and her husband attend 9 a.m. mass at Peckville Assembly of God in Blakely, PA every Sunday. In July 2016, there was a flyer placed in the church bulletin for a man named Kevin who was in need of a life-saving kidney, a flyer that would inspire Jo Ann to save a life.

Jo Ann had never met Kevin before, but the flyer caused her to ask another parish member if he knew Kevin. She was told Kevin was also a member of the parish who always attended the 11 a.m. mass. Kevin had been on dialysis for two years after having both kidneys removed due to a hereditary disease, ruling out most of his family as potential donors as many of them suffered from the same condition.

“This overwhelming feeling came over me,” Jo Ann recalls the day she saw the flyer. “I had never thought about being a donor, not when I died, let alone when I was alive.”

After mass, Jo Ann could not stop thinking about the call to save a life. She told her husband that evening that she wanted to be tested to be Kevin’s living kidney donor.

“My husband thought I was off the wall,” Jo Ann said. “But he knows when I make up my mind to do something there’s no arguing.”

After sharing the news with her husband, Jo Ann called Leigh Valley Transplant Center right away. Jo Ann was determined to help this man she had never met, calling the center every day for three weeks, until she finally received the call to come in for blood work. She began her testing in a local lab in Scranton, the only other person knowing of her actions, besides her husband, was her pastor.

“After I passed the second round of tests, my pastor insisted I tell Kevin that I was an exact match,” Jo Ann said. “I will never forget that day and how grateful he was that someone he had never met would step out and try and save his life.”

Despite being an exact match, the road to the day of the transplant was not an easy one. Jo Ann was told she would need to lose some weight in order to donate her kidney to Kevin. While Jo Ann worked to be in her best condition, Kevin’s health continued to decline, experiencing episodes where his lungs were filling up with fluid. In six months Jo Ann lost 65 pounds, motivated by the fact that Kevin’s life depended on it and the transplant date was set for February 8th, 2017.

As the day of surgery drew closer, the pair continued to experience struggles that could lead to a delay in the transplant. Kevin was continuously showing high potassium levels and it was uncertain if the 8th would stay the date. However, they remained optimistic, even planning a dinner for their families, along with their pastor, to meet the Saturday before the transplant date.

“I never wanted our families to meet in a waiting room,” Jo Ann said. “That was the best thing we could have done, it’s amazing how two families became one.”

The morning of the scheduled date, Kevin continued to show high levels of potassium and failed a stress test, unable to get his heart rate up. Doctor’s tried a final round of dialysis in an attempt to bring levels up to avoid postponing the surgery, and it was a success, just as the kidney transplant that followed that afternoon.

“I call Kevin my ‘brother from another mother’, we talk every single week,” Jo Ann said. “His mother and I also talk several times a week and do things together, we are family.”

Today, both Jo Ann and Kevin are living healthy, happy lives. The pair of strangers gained both a second chance at life and a new family, all because of Jo Ann’s gift of life to Kevin. Jo Ann and her husband serve as avid advocates for organ donation, both volunteering with Gift of Life Donor Program. They strive to spread awareness of the importance of organ donation, hoping to educate those who were once life them, unknowing of the lives registering as a donor can save.

“I never knew until I started this process how many people die every day waiting for an organ donor,” Jo Ann said. “Now when I see someone reaching out desperately for an organ, for either themselves or a loved one, it saddens me that more people aren’t coming forward to save a life. One never knows when they might be the one who is desperately searching for themselves or a loved one.”

NMDAW Profile: Rafael Pére- Narváez

August 3rd, 2017

National Minority Donor Awareness Week is a campaign created to increase awareness of the need for more organ, eye, and tissue donors, especially in minority communities. This week (Aug. 1-7, 2017), we will share stories that honor people of multicultural backgrounds who have saved others as donors, received a second chance at life, and encourage others to register as donors and take better care of their health in order to reduce the number of people needing a transplant.

At just five days old, Rafael Perez of San Juan Puerto Rico was taken to the operating room for the first of many life-altering surgeries. The effects of Prune Belly Syndrome, an extremely rare disorder of the urinary tract, required doctors to remove one of his kidneys, leaving Rafael with one kidney working at only 80 percent function.

By the time young Rafael had reached sixth grade, the kidney he had left began to fail him. His family was tested to find a living donor, but results revealed no family member was a match. Rafael would have to wait two years for a kidney to become available.

“Sometimes it was difficult to understand what was going on,” Rafael said, reflecting on his time as the youngest patient in his dialysis unit. “The nurses were always with me, we created a sort of friendship and they supported me the entire time.”

When Rafael reached the 8th grade, he received his first kidney transplant in San Juan, Puerto Rico. Yet after only a year Rafael began to reject his transplant. In order to save his life, he would have to go back on dialysis and wait for another kidney to become available.

Between transplants, Rafael never put his life on hold. He pushed forward when faced with illness and served as an advocate for donation with LifeLink of Puerto Rico, an organ and tissue procurement organization.

“My parents always supported and helped me,” said Rafael. “They tried to do everything as if I was a normal kid.”

Rafael’s second wait for a life-saving kidney lasted three years. He received another kidney in San Juan. This kidney would only last him seven years until rejection once again set in.

“I returned to dialysis and began to experience depression,” Rafael recalls. “I thought I didn’t want to go through the transplant again, that it would never function correctly again.”

Rafael’s second rejection put him on dialysis for five years. It was during this time that someone suggested he seek a transplant outside of Puerto Rico. Rafael discovered that Dallas Transport Institute had an office in San Juan and turned there to be listed, beginning the entire listing and testing process over again for a third time.

While Rafael waited for a kidney to become available on the U.S. waiting list, he took a job in California and continued Dialysis there for four months until he received a life-changing phone call. In April 2007, Rafael received a third kidney transplant in Dallas, Texas.

Today, ten years out from his third transplant, Rafael is living a full, healthy life and enjoying a successful journalism career in Philadelphia, thanks to his hard work and determination. He advocates every day for organ donation.

  When asked what he would like to say to his donor Rafael was extremely grateful, “Thank you to my donors. You helped me have a second chance at life.”

Honoring a hero’s legacy

August 1st, 2017

This past Saturday, Gift of Life was able to provide a Threads of Love Memorial Quilt with donors from the Lehigh Valley at an event. The event was in honor of Tylor Holmes, a hero and tissue donor.  His mother, Diane was able to see her son’s quilt on display and talk about his legacy.

Tylor Holmes was known for his big brown eyes and motorcycle that he named “Rosa Parks.” He lives on through dozens of people helped by tissue donation when Tylor, age 22, took his life five years ago.

His mom, Diane Holmes, started the T. Holmes Foundation to help prevent suicide and share Tylor’s legacy as a donor.

“One of our biggest goals is to spread awareness and education in different cultures,” she said. “Tylor’s gift of being a donor is what comforts our pain because we know he lives on.”

Diane says that National Minority Donor Awareness Week reminds us that “all lives matter and being a donor is such a precious and generous gift. It doesn’t surrender to color, to cultural differences, or financial means.”

August 1-7 is National Minority Donor Awareness Week which is designated to increase awareness of the need for more organ, eye, and tissue donors, especially in minority communities.  Currently, more than half of the national waiting list (58%) is represented by people of minority communities.  Register to save lives as an organ and tissue donor today: donors1.org/registry

To learn more about the T. Holmes Foundation, visit www.tholmesfoundation.com

The Gift of Life: Twice – One Man’s Life Saved by a Stranger, then by his Brother

July 13th, 2017

“It was the worst day of my life,” said Michael Parsley, a two-time organ transplant recipient from Nazareth, PA.  He was reflecting on his first evaluation to be placed on the national organ transplant waiting list. “We drove back from Philadelphia thinking, in five years, I would be dead.”

In 1992, Michael was living with the discomfort brought on by his rare rheumatoid arthritis. He was working a physically demanding job that required a physical and a pulmonary function test. That year had marked four years since his original arthritis diagnosis. It was time for the results of his illness to be revealed, and they were anything but what he was hoping to see.

Michael’s results revealed blood in his urine, indicating kidney damage. His arthritis had spread to his lungs and he had developed another rare condition, bronchiolitis obliterans. He spent 8 years in and out of the hospital on heavy steroids to battle the condition; his breathing had reduced to 35% of his normal capacity over this time period. In 2001, Michael’s pulmonary doctor in Lehigh Valley explained no other treatment was available; he would have to undergo a lung transplant.

After his initial evaluation a Temple Lung Center, Michael was told that he was not the ideal candidate for a lung transplant. However, he persisted on, stating that he would find another clinic that would accept him as a candidate. His spirit won over the team and he soon placed on the waiting list.

“I waited so long that it became part of my daily living, dragging around oxygen and feeling that way,” Michael said. “My health had consumed my life, my entire family’s life.”

After two years of waiting, the call Michael had been hoping for finally arrived. Michael was going to receive a set of lungs from an 18-year-old who had just passed away.

“It was literally the gift of life when I received my lungs,” Michael said. “I only had about a month left to live.”

Life appeared to be returning to normal for Michael. Improvements in his health continued for more than two years post-transplant until another health issue took Michael by surprise.

Years of heavy steroids and the anti-rejection drugs from his doublelung transplant had taken a toll on Michael’s kidneys. He was placed on dialysis and was told he would need another transplant to save his life yet again, but this time he was advised to search for a living donor as he would probably not survive the transplant waiting list.

“After living with the health issues for so much of my life, I couldn’t imagine putting anyone else through anything like that,” Michael said.

However, Michael’s family took charge with determination to ensure that Michael was given another chance to live a normal life. Both Michael’s wife and brother were tested and matched as potential donors.

“People are always surprised when I tell them this, but it wasn’t a hard decision to make at all,” said Bill Parsley, Michael’s brother who volunteered to be his living donor. “There’s nothing more important you can do in your life than save someone else’s like this.”

Bill had always lived a healthy, active life. His nearly spotless health record and relatively similar size to his brother made him the perfect donor to save Michael’s life.

“I had never had a surgery before this,” Bill said. “They do a terrific job in preparing you. We had a wonderful transplant coordinator who is a friend now. She was very honest, sometimes brutally, but she’s a wonderful woman.”

After the transplant, Michael was immediately back on the path to healthy living.

“Be nice to your siblings, you never know when you might need something from them,” Michael laughed. “I wouldn’t have survived the kidney waiting list without my brother.”

Michael attends yearly checkups at Temple Lung Center. Results from his latest pulmonary test indicate his lungs are performing better than they were five years ago. In addition, Bill’s kidney has provided Michael with 11 years of continuously increasing health.

“My brother and I were always close, but the transplant definitely made that bond stronger,” Michael said. “We are each other’s best friend.”

Michael now works as a speaker and an advocate for organ donation, presenting his story to the community to help break down misconceptions and the fear of the unknown.  He believes that the best way to spread awareness of the importance of registering to be an organ donor is to interact with recipients and see how their lives have been saved by others.

“I will drop anything to help others, because without the help of my brother and the donor I never even met, I would not be here today.”

 
 

© Gift of Life Donor Program, 401 North 3rd Street, Philadelphia, PA 19123
    800-DONORS-1 / 800-KIDNEY-1

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