TRIO Phila Home Cook Heroes

13 Jul

Sue Kelchner & grandchild 1090551_1_resized 1090556_1_resized 1090558_1_resized 1090561_1_resized 1090563_2_resized

Life and death decisions about who gets organs

17 Sep
Life and death decisions about who gets organs

September 17, 2013
Pittsburgh’s Post-Gazette
An editorial by Jim Gleason

     A story out of Newtown Square, Pa., is known to many millions of people: Sarah Murnaghan, now 11 years old, received two lung transplants in June after highly emotional attention in news and social media and a public debate over the merits of transplant allocation policy. Sarah has end-stage cystic fibrosis, and a judge ordered her added as an equal to the adult and adolescent lung transplant lists when she was originally at the bottom of those lists because she was too young.

     Every thinking, feeling human being should wish Sarah and her family well in her continued treatment and recovery.

     But some facts have been largely overlooked: In the months since Sarah Murnaghan’s story first gained public attention, about 5,500 men, women and children received transplants made possible by the generosity of deceased donors and the work of the national transplant network administered by the United Network for Organ Sharing. Sadly, about 1,500 others awaiting transplants died because no donated organs were available to meet their needs.

     When confronted with a large, tragic situation, we often seek personal meaning in the story of one person, such as a child. We can’t grasp the immensity of the earthquake and tsunami that struck the Indian Ocean in 2004. We can, however, e-mail to our friends the pictures and stories of the children who were rescued and needed to be reunited with their families.

     We can’t take in the immense human toll of Hurricane Katrina, but we can sympathize with Charles Evans, a precocious 9-year-old who sums up the plight of many in New Orleans’ 9th Ward. If we can be assured that one child’s needs are met, we can somehow feel just a bit better about the fate shared by thousands.

I, too, see transplantation in uniquely personal ways. I received a heart transplant nearly 20 years ago. My wife lost an adolescent son, who helped save and enhance other lives through organ donation. I am president of Transplant Recipients International Organization, a group devoted to addressing the needs and interests of transplant recipients and their loved ones. I also am a member of UNOS’ board of directors, which votes on national organ transplant policies. We decision-makers are not thoughtless, faceless bureaucrats. We are donation and transplant professionals, transplant recipients, living donors and relatives of deceased donors.

     We all are informed by strong personal experiences, whether they are first-hand experiences like mine or the relationships that transplant doctors have had with hundreds or thousands of patients. We want to ensure that as many people as possible have the chance for renewed life through transplantation.

     As much as we are moved by our personal emotions and opinions, to have a national system that is fair to the needs of more than 119,000 transplant candidates, we must also weigh carefully what medical experience and data suggest will be the most effective and beneficial policy given the supply of organs we have today. We do not take lightly any decision we make, knowing that as long as there is an organ shortage, some people in desperate need will benefit and others will not.

     Allocation policy can change and will continue to change as needed to help candidates with the organs we have available. But the larger lesson is lost in the focus on policy. Every transplant begins not with a policy but with a personal commitment to save and enhance the lives of others through organ donation.

You can decide, right now, whether someone needing a transplant will live — through your decision to be an organ donor. In fact, your decision can help save multiple lives — in some instances, as many as seven organ transplants can be made possible by one donor.

     If the nearly 100,000 people who signed the change.org petition asking for a policy change for Sarah Murnaghan continue to advocate for organ donation by committing personally and by getting 10 more friends and family members apiece to make the same decision, that would be a potent force in Sarah’s honor to ensure that the next person in need — perhaps a child, or a grandparent, or a veteran, or a first responder — will have the same opportunity for renewed life and health.

     If would be a great tragedy if, as we all take justifiable comfort in knowing one person’s needs have been met, we lose sight of the many who still can be helped and the role we all can play in helping them.

     Jim Gleason lives with his wife, Pam (a donor mom) in Beverly, N.J., and blogs at gleasonjim.wordpress.com  E-mail him at GleasonJim@aol.com.
This editorial first published September 17, 2013 12:00 am

TRIO Phila Transplant Candidate Workshop Agenda

18 Feb

Notice: TRIO Philadelphia is partnering with the Gift of Life Donor Program in hosting a 2016 candidate workshop in the Fall – date and agenda TBA!

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to see what past events have offered in their agenda, read the following . . .

TRIO Phila Candidate Workshop 2014 Agenda

(click on event title in line above to download/view the workshop agenda)

“Are you waiting for (or considering) an organ transplant?”

The life challenge you are facing is both complex and so amazingly successful  Here in the Philadelphia and Delaware Valley region we have over 43 transplant programs that reach out and save lives every day, returning dying patients to a “new normal” and potentially very long productive and fulfilling lives post transplant.

While each program offers an education session about their local process and that particular organ, there is so much more to consider and learn about that can increase even further your chances of success and that post transplant life so many enjoy.

TRIO Philadelphia invites you to bring your family along for this one day educational and social event that will offer expert presentations on the many aspects of the adventure you are about to journey.  Learn about the process overall and the things you can do while waiting to “make a difference.”  Our 2014 workshop will be held Saturday, May 10th, 9 to 2 (with optional opportunities from 8 to 9am and 2 to 3pm), at the Gift of Life Donor Program office in Philadelphia (see brochure link below for agenda details and event address)

For this event or a schedule of future workshops, contact Jim Gleason at Gleasonjim@aol.com or (609) 877-4493 to register or ask questions.  Note: space is usually limited, so early registration is advised.

Click here for details about our upcoming program open to all at no charge.  Just part of the mission of our chapter here in Philadelphia.

TRIO intimacy survey for recipients and their partners – results & video

11 Oct

10/1/12 Update: This survey is now closed.  To download the raw results of that survey, click here –> TRIO Post Transplant Intimacy survey results.  To watch the video of that TRIO Leadership Summit workshop with panel and audience discussion, click below:

Original posting: TRIO (Transplant Recipients International Organization, Inc.)  is hosting a workshop on the topic: “Enjoying sexual fulfillment post transplant” at its Leadership Summit & 25th Anniversary dinner Friday Sept 28/29th.  To open up the discussion by a panel of two transplant recipients and two partners of recipients led by a transplant nurse facilitator, TRIO is asking organ transplant recipients and partners of recipients to take a totally anonymous survey from which we will compile summary reports and any comments to for that workshop.  Both recipients and partners take the identical survey separately, so neither will see the others responses.  No identifying information is gathered, no sexually explicit questions are asked, only general life experience data and any comments you may wish to offer.

If you are a transplant recipient or a partner of one, please help by taking just 5 minutes to take this survey between now and next Monday when it will close at midnight (Eastern time).  Just click on this link: http://survey.constantcontact.com/survey/a07e6eifuwth79vfl6x/start

Note: after the Summit is over, we will post a video of that workshop so everyone can see what develops.

Please address any questions to TRIO president, Jim Gleason (18 years heart recipient) at GleasonJim@aol.com  This open to all, so pass the link to your network of fellow patients and their partners.

Come view the 25th anniversary dinner video (updated 7/17/2012)

24 May

Its part of our chapter history now, but you can get a feel for the fun time we all enjoyed, sharing life milestones together at our June 23rd TRIO 25th Anniversary dinner at the Jersey shore by watching the YouTube video of the event:

TRIO Philadelphia “Life Celebration” dinner at the Jersey shore

 

Original invitational posting:

TRIO is celebrating the 25th anniversary of its founding in Pittsburgh back in 1987.  As part of that celebration, TRIO Philadelphia is inviting you to come join us in celebration of your own life milestones – be that transplant related or any other life event you want to share – down at the nearby Jersey shore town of Avon-by-the-Sea.  We gather for a “Dutch Treat” – i.e. there is no fee to join us, but you do pay for your won meal, chosen off the famous Schneider’s menu of home-style delicious German entrees, appetizers and especially those special desserts.

Saturday, June 16th, from 2pm til 5 (and beyond) – see (no, you can’t read the flyer image below, we know that!) the details by clicking here for the event flyer with directions for a straight shot drive across New Jersey – easy to get to and find there on the main street of that lovely shore town.

PS: You can also click on the flyer image here to download that flyer . . .

“Come and celebrate with us . . .”

NY Youth Circle family visits

24 May

TRIO Philadelphia entertained special guests at their chapter meeting recently.

Mary Wu, co-leader of the TRIO Youth Circle movement, author, Rose parade float rider, two time kidney recipient, public speaker, Washington testimonial speaker… (need I go on?) and her lifelong caregiver (university professor, cancer researcher, etc.) father, Joe, traveled to Philadelphia to see what we are doing with our TRIO chapter here.  They both offered fascinating stories of their decades of life dealing with her kidney transplants (two) and growing up to the young woman she is now.

Following the chapter meeting, Mary and Joe joined a few chapter members for a tour, lunch and extended conversation in the new Transplant Family House nearby.  Their discussions where both insightful and inspiring, talking about TRIO directions at both the local and national (and international) levels.  For them, it was a long trip involving trains and bus travel of many hours, but they agreed it was well worth the effort and promised to return again in the near future with more time to explore the great Philadelphia sites of interest. 

“Thanks for the sharing and wonderful fun visit, Mary & Joe”

Kidney recipient, Mary Wu, and her dad visit TRIO Philadelphia (sitting front row against the backdrop of TRIO Philadelphia members (l to r) Faith, Elizabeth, Phil & Sandy, Jim and Susan with two of the 20+ Gift of Life Donor Program donor quilts)