Second Chance Blog

 

Delaware Wife Carries on Husband’s Legacy through Volunteering

June 28th, 2016

Gregory Council was always a man who knew how to motivate others.  From his younger days as the owner of a barbershop in North Philadelphia to his work in the NJ School District, where he counseled and mentored at-risk youth who were facing possible incarceration – he had a gift at giving guidance to others and lending a helping hand.

Gregory and Brenda Council

He had always been a healthy man who was active and loved sports.  He got married and had two children, and settled down in Wilmington, DE.  His wife, Brenda, and him had known each other and dated since 1973.  His challenge in life was that he struggled with Hepatitis C, a disease that was destroying his liver and his health.

In 2009, his health continued to deteriorate and he was listed on the organ transplant waitlist for a liver.  He also had to begin dialysis because his kidneys were no longer functioning.  The strain of his sickness took a huge toll on his physical health.  He was very ill and was bed ridden for much of the time that he waited for a liver transplant.  He also required continuous care, so both of his adult children moved home to help take care of him.      

Even during such a challenging time, he never gave up hope on himself or on other people.  Although he was confined to his bed, he still welcomed the opportunity to counsel people.  He offered support to a young man who was having issues and was in the foster system.  Even physically ill, he used his ability to motivate and benefit others.  “He always strived to let people know the value of life, and to help them have the opportunity to appreciate it.” Brenda said.

Then, in September 2010 his generosity with others was returned to him – someone said “yes” to donation and saved Gregory’s life.  He got the call that a liver was available and he immediately went to the hospital.  His surgery was a success and he healed quickly.  Just two weeks after his transplant, he was at Gift of Life Donor Program volunteering and out in the community sharing his amazing story.

“As soon as he was able to, he starting volunteering and giving back.” said Brenda. “He got his transplant and was so excited to be alive.  He saw the beauty in everything.  Somebody gave him another chance to live and he wanted to give back.  He was rediscovering everything and had such an appreciation for his family, his neighbors and friends.”

Sadly, Gregory has since passed away, but his legacy lives on through his wife, children and grandchildren.  Brenda is a huge advocate for Gift of Life and for organ and tissue donation, speaks regularly and does community outreach.  She is also a member of the Delaware Coalition and has promoted donation throughout the state.

Currently, more than 5,700 people in Gift of Life’s region – eastern PA, southern NJ and DE – are awaiting a life-saving organ transplant, and minorities are the group that is affected the most.  National Minority Donor Awareness Week, held August 1-7, honors the generosity of multicultural donors and their families, while also underscoring the critical need for minority communities to register as potential organ and tissue donors. Nationally, minority communities represent 25% of the population, but represent a startling 58% and more of those waiting on a life-saving transplant. In Gift of Life’s region, more than 50% of those waiting for a kidney transplant are minority.  Gift of Life believes this week is an important platform to build upon because lack of education is crippling minority communities.

“I speak with so many people in the minority community who lack trust and have a lot of misconceptions about organ donation.” said Brenda. “I want to encourage people to give others another chance at life.  I don’t think people realize how many individuals are waiting and how great the need is.”

Why have I not heard from my loved one’s recipients?

June 3rd, 2016

Donor family members are often disappointed when they have not heard from their loved ones’ recipients. While many would agree that a thank you note is a kind and appropriate gesture, there are several valid reasons why one may chose not to write. Hopefully this post sheds some light on some of the emotions recipients’ face that may serve as barriers to the act of writing.   

There are a variety of reasons why some recipients don’t initiate the correspondence process or respond to letters from their donor’s family. Generally speaking, this is a very unique relationship and many people are unsure how to navigate it. Instead of opening the door to the unknown, they may choose the path of least resistance and leave it shut. Many recipients feel very overwhelmed at the thought of their life continuing on when someone else’s ended. Often, there is a level of “survivor guilt” that may be present. For some recipients, hearing from a donor’s family about the person who died could be emotionally difficult.  To write a letter may be a hard task for them to accomplish. Perhaps they don’t feel “worthy” of this immense gift or cannot put into words how this feels.

Also, some recipients may have a difficult recovery period or have not had the restored health they hoped for post-transplant. They may not want to share their health status with their donor’s family in the event that this would be a disappointment. Lastly, some patients, while the sickest and in most need, may not have the personality that lends itself to expressing their emotions.

Recipients are encouraged by their transplant centers to write letters of thanks to their donor’s family, but unfortunately this is not something that is a requirement once receiving an organ. Gift of Life Donor Program also offers “writing kits” for the transplant centers to provide to their recipients to assist them with the writing process. Family Support Services counselors at Gift of Life also hold “Writing to your Donor Family” workshops at area transplant centers and at Gift of Life Family House to talk with recipients about the importance of writing and to acknowledge the emotional aspects of the process.

If you would like to know more about the correspondence process you can contact Family Support Services.  We are also hosting an informational workshop for donor families on Wednesday, June 8 from 6:30pm-8:30pm about communicating with recipients. If you would like to attend the workshop, please RSVP by June 3 to Leslie Coleman.

Additionally, Hearts of Gold is a volunteer group of donor family members, whose aim is to address the specific needs and issues of these families. The group focuses on how donor families can educate the public about organ and tissue donation, and acts as a support system for other families whose loved ones have made the generous decision to donate in their time of grief.  Find out more here: http://www.donors1.org/volunteer/groups/hearts/ 

Retired Army Major Overcomes Disease through Transplantation

May 18th, 2016

New Jersey resident, Joe Pratt, is a hero for many reasons.  He spent much of his life serving the United States as an officer and major in the Army for 20 years.  He also had two tours in Vietnam and received a Bronze Medal of honor from the President of the United States. And, he was an instructor at the Airborne School in Ft. Benning, Georgia, where he served as part of the Parachute Infantry Regiment and trained paratroopers.

When Joe retired in 1978, he never thought he would be facing the biggest struggle of his life.  He noticed over the next few years that his breathing became progressively more restricted. He pushed on and trieJoe Pratt - Double Lung Recipientd to continue life as normal, but eventually he became so out of breath that he knew something was very wrong.  He went to his doctor and they diagnosed him with chronic obstructive pulmonary disease (COPD), a chronic and obstructive lung disease that is characterized by poor airflow.

After several years had passed, and what seemed like a lifetime of tolerating the suffocating symptoms of the disease, Joe made the decision to go see a specialist in 2012.  Recognizing how deteriorated Joe’s health had become, the doctor put him on oxygen 24 hours a day, 7 days a week.  Later that year, Joe had a bad exacerbation due to the COPD and was admitted to a local hospital.

After recuperating in the hospital, the doctor wanted to send Joe home.  This was the last straw for his family, especially his daughter.  They saw him suffering and knew he couldn’t just go home and continue life this way.  They decided to take the situation into their own hands.  After a lot of research, Joe’s daughter found a specialist that she thought may be able to help her father.

“The doctor wanted me to go home,” said Joe.  “There didn’t seem to be anything more that they could do with me when I was in the hospital.  My daughter didn’t accept that answer.”  His new doctor examined him and said something that Joe never thought he’d hear – “you are going to need a lung transplant.”

“The testing for the transplant was the hardest part,” said Joe.  “I was listed on the organ transplant waitlist and tried to have a somewhat normal life. I tried to get out of the house.  It was a chore, but I did it.  The real hardship is on the caregivers.  I guess I never realized how sick I was, but my family – they really struggled with it,” he said.

After 6 weeks of waiting, Joe was given a second chance at life – a new pair of lungs.  He says that he would like to meet the family who gave him this tremendous gift.  He is so overwhelmed with gratitude, knowing that even when the donor family was faced with such a great loss, they still chose to help others.

Joe’s success story is not one that everyone on the waitlist gets to experience.  Currently in the U.S., 21 people die each day while waiting for a life-saving organ transplant. And the waitlist stats are staggering – over 6,100 men, women and children in Gift of Life Donor Program’s region (southern NJ, eastern PA and DE) and more than 123,000 in the U.S. are currently waiting.

Today, Joe said that he is able to do things that he never dreamed of.  He finally feels free to live his life without being sick, tired or tethered to an oxygen machine.  Since receiving the gift of life, Joe devotes much of his time to volunteering for Gift of Life, educating the community about the importance of being an organ and tissue donor.  He volunteers regularly and speaks at high schools and churches throughout NJ to increase organ donor awareness and encourage people to register as donors.  He also formed Team Sky Soldier and participated in April with his family and friends in Gift of Life’s Donor Dash.  He was even able to finish the 3K walk, showing how far he has come.  This year, Team Sky Soldier raised more than $4,500 for the Donor Dash that will be used for educational outreach.

When people question if they want to become a registered organ donor, Joe says, “Look at me.  I’m a product of what happens when people are donors. It saves lives.  Why would you not want to do it?”

About Gift of Life Donor Program Since 1974, Gift of Life coordinated more than 38,000 life-saving organ transplants and over 550,000 tissue transplants.  Gift of Life serves as the link between donors and patients awaiting life-saving organ and life-enhancing tissue transplants. Serving nearly 11 million people in the region, Gift of Life’s coordination of over 40 donors-per-million-population ranks among the highest in the world.  For more information about donation and to register, visit us at donors1.org.

Local Kidney Recipient Celebrates 50 Years with His Life-Saving Transplants

May 13th, 2016

Two transplanted kidneys and 50 years later, Havertown, PA resident, Stephen Henderson, is still going strong at 74 years old.  On Saturday, May 14, approximately 40 of Stephen’s family and friends – some traveling from as far away as Oregon – will celebrate Stephen’s life and 50th “kidney-versary.”

Stephen had an active and healthy childhood, and only began to notice symptoms from his failing kidneys once he was in college.  He pushed on and went to graduate school, but quickly realized that him symptoms were too painful to bear.  After several years of severe cramping, nausea, exhaustion and numbness in his hands and feet – doctors told him that he would need a kidney transplant.

His parents did research and discovered that living donation may be an option.  His father committed to being Stephen’s life-saving kidney donor, and they moved forward with the process.  Stephen was unable to tolerate dialysis and doctors had to perform the transplant sooner than they had previously planned due to his quickly deteriorating health.

“It was the 1960s, and transplantation was considered experimental at that time.  It was a lot different than it is now.” Stephen said.  “Both of my original kidneys had to be removed, but I immediately started feeling better once my new kidney began to work.  My father didn’t have any issues after the transplant, and lived a healthy, long life – well into his 80s.”

After his first transplant, Stephen was able to do many things that he previously was unable to.  He had his transplant in May and by September he was energetic and back to teaching – a profession that he loved.  His wife, who is now deceased, worked with him for many years.  They both had a background in counseling and enjoyed traveling and hosting workshops on death and dying.  Stephen was also a therapist for high school age children, and worked as a counselor for patients in hospice care.

He had 21 years with his father’s kidney until his symptoms returned.  His blood pressure skyrocketed and he had to go on dialysis.  He was never added to the organ transplant waitlist because his brother, Bill Henderson (of Media, PA), was a perfect match to become a living donor for him.  In 1987, Stephen received the gift of life for a second time from his brother Bill.

Bill said, “It’s wonderful to be able to do something like that.  It’s pretty significant that it has been 50 years since he received his first transplant, and that he will turn 75 soon.  He’s lived a long time on two borrowed kidneys.  He’s lived long enough to reach a point where he can now worry about the issues that come with old age.  We didn’t know if that would ever happen.” he said.

“My two kidney transplants have allowed me to live a full life.” said Stephen.

About Gift of Life Donor Program: Since 1974, Gift of Life has coordinated more than 40,000 organ transplants and an estimated 600,000 tissue transplants. Gift of Life’s service area includes nearly 11 million people, and in 2015 the organization coordinated over 44 organ donors-per-million-population – ranking it among the highest in the world. For more information about organ and tissue donation or to register today, visit donors1.org.  It only takes 30 seconds to register.

A Mother’s Love: Giving the Gift of Life

May 6th, 2016

There is nothing comparable to a mother’s love.  It’s selfless, always giving and comforting.  But for Tiffany Kuzmick, from Garnett Valley, PA, her generosity was put to the ultimate test when her daughter, Emma, was diagnosed with biliary atresia.

Tiffany and her family

At six weeks old, Tiffany took Emma to her pediatrician because she had jaundice.  After having her liver functions checked, it was clear that something was wrong.  She had a surgical treatment, but it was only a temporary fix.  After a ten-day hospital stay, she was able to come home.  Because Emma was failing to thrive, she needed to have a feeding tube to ensure that she had a sufficient amount of nutrition.

As a small child, Emma had experienced a whirlwind of testing, surgeries, illness and long hospital stays. “On a good day, you would never have known that she was sick.” said Tiffany.  “But she was.  In just a few years, she was in the hospital for more than 100 nights. We were lucky to have such a strong support system with our family and friends.  It allowed me to focus on Emma.  I wanted my baby to thrive.” she said.

Due to Emma’s decreasing liver function and deteriorating health, she was added to the organ transplant waitlist – which didn’t provide much comfort to her family.  Currently in the U.S., an average of21 people die each day while waiting for a life-saving organ transplant that never comes.  There are over 5,700 men, women and children waiting for an organ transplant in the region, and over 121,000 nationally.  These statistics are frightening. Tiffany knew that there was no guarantee that Emma would receive a second chance at life, so she moved into action.  She began the extensive testing to see if she was a match for Emma, and if she could be a living donor.

“After five weeks of testing, I found out that I was a match.  Emma was only three at this time, and I had my son Ben, who was one.  It was a lot to juggle – me having the surgery and Emma recovering too.  We had calendars to manage everyone’s schedule and my husband was really amazing during that time.” said Tiffany.  “It got to a point where I felt like ‘Take whatever you need from me.  Just make Emma better.’”

Although it was difficult for Tiffany to not be able to care for Emma after they both had surgery because of her own recovery, she felt grateful that she was able to save her daughter’s life.  “Before Emma’s transplant, she was really sick.  Her ammonia levels were very high, and she had bleeding episodes and blood transfusions. After recovering, we never looked back.  She was able to live an active life and had an appetite for the first time.” Tiffany said.

Today, Emma is a healthy seven-year-old-girl.  “She’s a miracle.  She takes one medicine, twice a day and is able to do gymnastics and dance – which she loves.  She’s a great big sister and is a happy little girl.  I feel blessed that I was able to give her life two times.  Not every mother can say that.” she said.

  

About Gift of Life Donor Program: Since 1974, Gift of Life has coordinated more than 42,000 organ transplants and an estimated 600,000 tissue transplants. Gift of Life’s service area includes nearly 11 million people, and in 2015 the organization coordinated over 44 organ donors-per-million-population – ranking it among the highest in the world. One organ and tissue donor can save and enhance the lives of up to 50 people.  For more information about organ and tissue donation or to register today, visit donors1.org.  It only takes 30 seconds to register.

Honoring Mothers: Manchester, PA Mother Waiting for a Second Chance at Life

May 6th, 2016

Most mothers are happy to be given flowers or just spend time with their children on Mother’s Day.  For one Manchester, PA mother, Sheila Beichner, she will receive more than a gift next week – she’ll get a second chance at life.

Sheila was healthy for most of her life.  At 27, she started having recurring urinary tract infections and went to the doctor to find out what was going on.  She was diagnosed with chronic kidney disease, but was told by her doctor that she had one of the least aggressive forms of the disease.  She didn’t have any major symptoms for nearly a decade.

Sheila and Kyle

Then at age 37, her health began to significantly decline.  Her kidney function decreased, and she started to experience muscle spasms, cramping and excessive water retention in her legs, ankles, hands and feet.  Her issues progressed quickly, until she reached stage four kidney failure and had to be listed for a life-saving kidney transplant.

She knew that the wait for a new kidney could be a long and painful road.  Many people wait years for a kidney transplant, and currently 21 people (on average) die each day in the U.S. while waiting.  She relied on her faith and church for support, and found a group for individuals who are going through severe illness. The group, led by Lisa Little, RN, gave Sheila hope during her challenging struggles with her failing health.   

At one point, Sheila and her son spoke to their congregation about her need for a kidney transplant.  As she desperately waited for a phone call telling her that a kidney was available, she also shared her story in hopes that a living donor would come forward.  Twelve people were tested in an effort to save Sheila’s life through living donation.  Even her support group organizer, Lisa, was tested.  Then something amazing happened.

“When I found out that Lisa was a match and wanted to be my donor, I was in awe.” said Sheila. “It’s such a selfless and heroic act. I am filled with gratitude for her. We’re going to do the surgery on May 13th.  I still can’t believe it.”

Sheila has gone through a very dark period in her life while dealing with her illness, and she is anxiously awaiting her transplant. As Mother’s Day approaches, she is looking forward to having her health back, and is grateful to have more time with her son Kyle, who is now 14.

“When I spoke in front of my church to discuss my need for a transplant, I asked Kyle to stand with me.  I wanted him to see how important it is to be supportive and to show compassion.  I also took him to the support group with me.  I think he gets it – life has ups and downs.” she said.

Sheila spoke about her mother as well.  “My mother will be my caretaker after my transplant.  She is the type of person who would do anything for others.  She’s really helped me while I’ve been sick – cooking, cleaning and taking me to appointments. She’s a very positive person.” said Sheila.  “I hope that everyone registers as an organ donor.  You can save a person’s life.  I can’t imagine a greater thing to do for someone.”

About Gift of Life Donor Program: Since 1974, Gift of Life has coordinated more than 42,000 organ transplants and an estimated 600,000 tissue transplants. Gift of Life’s service area includes nearly 11 million people, and in 2015 the organization coordinated over 44 organ donors-per-million-population – ranking it among the highest in the world. One organ and tissue donor can save and enhance the lives of up to 50 people.  For more information about organ and tissue donation or to register today, visit donors1.org.  It only takes 30 seconds to register.

 
 

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

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