Second Chance Blog

 

Melissa Coleman – A Very Grateful Kidney Transplant Recipient

March 12th, 2015

melissa coleman

“I unexpectedly found out that I had a rare kidney disease called Focal Segmental Glomerulosclerosis (FSGS) after applying to volunteer at Children’s Hospital of Philadelphia in 1996. For 8 years, I underwent a myriad of tests, scans, biopsies and surgeries.  I had to start dialysis in 2004 when my native kidneys failed.  I chose the peritoneal dialysis modality so I could perform it at home and work during the day.  Basically I had two full-time jobs:  saving my life and paying my bills.  After enduring being hooked up to my dialysis machine every night for four years, I was given the gift of life and received a kidney transplant on August 26, 2008.  I consider this date my new lease on life birthdate and am forever thankful and grateful my donor and hero, Sean Clegg, and his parents, Gail and Andy, for giving me this awe-inspiring second chance!

I am honored to be one of Sean’s living legacies and I strive daily to pay my gift forward.  I am extremely fortunate that my personal and professional lives have become intertwined, and am proud to work at Hahnemann University Hospital in the Abdominal Transplant Program, where I’m able to showcase the benefits of transplantation.

If someone would have told me in 1996 when I was diagnosed with FSGS that I would be living such an awesome life post-transplant, I would have thought it was crazy and far from reality. While waiting for my transplant, I dreamed of traveling and getting my passport stamped once again.  The gift of life that Sean has given me has allowed me to fulfill this dream. In 2011, my Mom and I were able to go to Paris to celebrate my 40th birthday and to visit Israel in 2012.”

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Melissa currently works at Hahnemann University Hospital and is a steadfast volunteer with Gift of Life Donor Program along with her donor, Sean’s, mother, Gail Clegg.  We are grateful every day for this awesome pair who work tirelessly to promote organ and tissue donation.

 

Family Support Blog Series: Gearing up for Camp – Grief Camps for kids

March 10th, 2015

Gearing up for Camp – Grief Camps for kids

Kimberly Rabago, MSW

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Even though the weather tells us differently, summer will be here before we know it! In the coming weeks most parents start thinking about what activities and camps they plan on sending their children.  However, if you have recently experienced a death of a family member, getting organized and researching camp programs may seem like a difficult task.  Plus, you may question whether sending your child/children to a camp to talk about their loss is a good idea.

When we think of traditional camps, we tend to think of swimming, making new friends, arts & crafts, camp songs and roasting marshmallows at the fire. Funny thing is…this is what usually happens at a grief camp!  Just like a “normal” day camp experience, a grief camp offers children a space to play, share their stories and make new friends with other children who are living similar loss experiences.  Even though, as hard as we try as parents to make sure our children are coping well, many children do feel isolated from their peers as they cope with a loss.  Attending a grief camp offers kids an opportunity to be surrounded with children coping with similar or the same type of loss, which allows them to feel less alone in their grief.  Along with that, they also may gain validation from others that how they are feeling is normal based on what they are experiencing.  While there are traditional elements to a grief camp, there are unique activities they offer:

  • Age-based support groups usually facilitated by a professional trained in grief and loss;
  • Team building exercises to reinforce that they are supported during this difficult time;
  • Memorial or remembrance ceremonies to honor the person who died. These can be a balloon release or a stone personalized with the name of their loved one to add to their home garden.

When making a decision about a grief camp for your child/children it may be helpful if you come together as a family to decide if there is any interest in attending. Most camps have professionals available who a parent can speak to and ask questions before signing your child/children up.  The overall hope when sending your child to any camp is that they are able to connect with others, have fun and be able to be a kid. The goal of a grief camp is the same.  Sometimes, following the death of a family member children feel as if they are now “in charge” of the family or shouldn’t have fun anymore.  Allowing them to meet others who share similar stories can allow them to be a kid again and be very helpful in their healing process.

Here are some local camp ideas. If any of these camps sound appealing, please call and speak to someone affiliated with the camp. Please note that neither the writer nor Gift of Life Donor Program have any affiliation with any of the camps listed below.

 

Pennsylvania

Camp Millie – The Center for Loss and Bereavement, Skippack, PA

http://bereavementcenter.org/

Camp Charlie – Safe Harbor, Abington, PA

http://www.abingtonhealth.org/services-specialties/childrens-health/resources/safe-harbor/#.VP4PqDJ0y2w

Camp Erin – Jamie Moyer foundation

http://www.moyerfoundation.org/

Camp Courage: Millville, PA

http://bereavementcamp.org

Camp Chimaqua – York County, PA

http://www.hospiceandcommunitycare.org/_additional-pages/camp-chimaqua.html

 

Delaware

Camp New Hope – Delaware

http://www.delawarehospice.org/programs-services/family-support-services/new-hope/

 

New Jersey

Camp Firefly: Medford Lakes, NJ

http://www.moorestownvna.org/web/frontend.php/page/index?pageld=MjE=

 

National Donor Day is Extra Special Occasion for 18-Year-Old Heart Recipient

February 6th, 2015

Douglassville, PA native, Jacob Hafer, was born on Valentine’s Day with a “broken heart.”   Jacob was just an infant when he was diagnosed with Hypoplastic Left Heart Syndrome, a rare heart defect that resulted in him needing a transplant. He was listed on the organ transplant waitlist after being diagnosed, and his parents waited nervously for a heart to become available.

Many individuals – especially children – wait months, if not years for a life-saving organ transplant. Jacob was one of the lucky ones.  Just seven months after being listed, his family received the call that a heart was available for him.  The heart was generously donated by the family of a five year old boy from Atlanta, GA who tragically passed away in a car accident.  Doctors were concerned that the five year old’s heart may not fit into the small body of seven month old Jacob, but were able to successfully perform the transplant without any issues.

Today, at 18 year’s old, Jacob says that his life has been a normal one – growing up and being active just like other children. “I ran track and played basketball in school.  I’ve been able to do what my friends do.  My doctors thought that I may have difficulty running track with my heart, but it was never a problem for me.  Besides taking medicine twice a day, I have had a life like any other healthy person,” he said.

February 14th is a special day for Jacob – not only because it is his birthday, but because it’s also National Donor Day.  Observed annually, Donor Day encourages people to register as organ and tissue donors, and educates the public about the more than 123,000 men, women and children nationally who are awaiting a life-saving organ transplant. In the state of Pennsylvania, more than 8,500 people are waiting for a second chance at life.

Jacob Hafer received a life-saving heart transplant at just seven months old.

Jacob Hafer received a life-saving heart transplant at just seven months old.

Jacob and his family are passionate about telling their story wherever they can – at churches, schools and community meetings. They want to help others understand the critical need and importance of becoming an organ and tissue donor. A few years ago, they began volunteering with Gift of Life Donor Program by hosting Gift of Life information tables at the Reading Phillies games and participating in Gift of Life Family House’s Home Cook Heroes Program.  As a Home Cook Hero, Jacob – along with several of his friends and family members – prepare home cooked meals for the transplant patients and their families who are staying at the House and receiving transplant-related care in the Philadelphia area.

“I think if everyone really knew how sick people on the waitlist are, they would register,” Jacob said. “Healthy people don’t realize that individuals on the waitlist just want to be healthy and be able to fully live the lives that they deserve.  I’m going to do all that I can to show people that transplantation works and that they have the power to register and save lives – just like my donor did for me.”

Currently, 21 people die each day waiting for a transplant in the United States. But there is hope, and you can make a difference! Take action and join the movement to help save lives.  Register today and encourage your friends and family to do the same. It only takes 30 seconds to register at www.donors1.org.

Family Support Blog Series: Our Personal Superheroes

January 30th, 2015

Recently, in our Annual Full Staff Meeting here at Gift of Life, we were tasked with creating a Superhero that represents our department. This was easy for us… we did not need to invent a fictional character because we work with real-life superheroes every day.  Below is the description of our personal superheroes… Donor Family Members.

Team Philadelphia Donor Family Members in Houston, TX, July 2014.

Team Philadelphia Donor Family Members in Houston, TX, July 2014.

Donor families have an origin story much like the stories of superheroes that we have all heard. The ability to be a donor family is born through trauma, sheer chance, and many families mention that donation feels like it was meant to be or “their destiny,” as donation embodies the spirit in which their loved one lived. Like Superheroes; donor families have the ability to make and keep a promise through donor designation and authorization.

Donor families have the super powers of compassion and selflessness. They have great courage to share their story with us as well as the greater community. Although they may look soft, broken and helpless they are brave and strong.

All of us in our roles at GLDP are “sidekicks” to our donor families. We provide them with the support they need to rise to the occasion to fulfill their destiny and become a superhero.

Donor families don’t wear a special uniform, they are everyday people, just like you or I. They are members of our community, members of our family and people that rise above the pain and despair to become “their super-selves” despite all they have been through.

Donor families save lives through honoring donor designation and authorization, by thinking of others, and saying ‘yes’ to donation. They share their stories of their loved one’s life and donation which empowers others, which in turn, saves more lives.

Thank you Donor Families!

A Special Offer for Gift of Life Volunteers

January 14th, 2015

under-the-skin

Gift of Life is excited to partner with the Arden Theatre for the world premiere of Under the Skin, a production about organ donation. The play, written by Michael Hollinger and directed by Terrence J. Nolen, will debut at the Arden Theatre (40 North 2nd St, Philadelphia, PA 19106) on January 15th.  Under the Skin explores the question – what does it mean to give a part of yourself to someone else?  Lou, a man dying of kidney failure, asks his estranged daughter Raina to give him one of hers, and she must decide if she can put her anger aside long enough to save his life. When Raina meets Jarrell, a young man with whom there is an instant connection, sparks fly and secrets are revealed as they grapple with the issues of forgiveness, inheritance and family.

 

Arden Theatre Company will present a special performance of Under the Skin for Gift of Life supporters and their guests at 8pm tonight, Wednesday, January 14.  This performance is the production’s final dress rehearsal and will afford you and a guest the opportunity to enjoy an exclusive performance of this show before it premieres to the general public and the press.  While this special evening is open on a “pay-what-you-can” basis with all ticket proceeds donated to Gift of Life, there is a suggested donation of $20 which you can bring the night of the performance.

 

A limited number of tickets will be available at the door this evening (January 14th) at the box office beginning at 7 p.m.

Family Support Blog Series: The 10 Best and Worst Things to Say to Someone in Grief

January 9th, 2015

Although we intend to offer support and understanding, the things we say to grieving friends may turn out to be dismissive or hurtful.  We feel awkward not knowing what to say, and their pain makes us uncomfortable.

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The WORST things to say to someone in grief:

1. At least she lived a long life; many people die young.

2. He is in a better place.

3. She brought this on herself.

4. There is a reason for everything.

5. Aren’t you over him yet? It’s time to move on.

6. You can still have another child.

7. She was such a good person; God wanted her to be with Him.

8. I know how you feel.

9. She did what she came here to do, and it was her time to go.

10. Be strong.

Why they are bad:

  • They want to fix the loss.
  • They are about our discomfort.
  • They are directive in nature.
  • They rationalize or try to explain away the loss.
  • They may be judgmental.
  • They are not about the griever.
  • They minimize the loss.
  • They put a time line on loss.

The BEST things to say to someone in grief:

1. I am so sorry for your loss.

2. I wish I had the right words, just know I care.

3. I don’t know how you feel, but I am here if I can help in any way.

4. You and your loved one will be in my thoughts and prayers.

5. My favorite memory of your loved one is…

6. I am always just a phone call away.

7. Give a hug instead of saying anything.

8. We all need help at times like this, and I am here for you.

9. I am usually up early (or late) if you need anything.

10. Say nothing; just be with the person.

Why they are better:

  • They are supportive without trying to fix the loss.
  • They recognize loss.
  • They are about feelings.
  • They are not telling anyone what to do.
  • They admit you can’t make it better.
  • They don’t ask for someone to change his/her feelings.

This list is adapted from Davis Kessler, author, Of Grief and Grieving, www.davidkessler.org

 
 

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

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