Discussion topic for May 24th meeting: traits inherited in transplanted organs

21 May

Come join us for an interesting evening with this controversial topic . . .


Transplant Games of America coming to NJ Meadowlands in 2020

3 Mar

After you attend the 2018 Games in Salt Lake City (last SLC Games were held in 1996 and I was there!  My first Games and they were GREAT!) start planning for the 2020 Games just announced as being held in New Jersey!!!  More to come in the months ahead …  Stay Tuned!

PS: See you in SLC this August – look up our TRIO table and say hello!


Feb 21st meeting speaker – video on-line!

1 Mar

Our recent meeting and speaker was recorded and is now available as one of the 100 TRIO Transplant Library programs available for viewing on YouTube at https://youtu.be/CXtGL8TZj5U

Qualifying For Disability Benefits After an Organ Transplant

30 Nov

If you or a loved one has recently had an organ transplant procedure, or is on the wait list for an organ transplant, you will almost always qualify for Social Security disability benefits. The Social Security Administration (SSA) offers financial resources for people with serious illnesses that prevent them from working for one year or more. An organ transplant always medically qualifies, and you might also qualify while you are awaiting your donor.

Qualifying After a Transplant

The SSA maintains its own list of qualifying conditions, known as the Blue Book. For most illnesses or disabilities, the Blue Book has descriptions of test results or symptoms needed to qualify. Organ transplants are much more straightforward—If you have a transplant surgery, you will qualify for at least 12 months after the procedure. A lung transplant will qualify for a full three years after surgery. If you are the recipient of a bone marrow or stem cell donation, you will also qualify for benefits for 12 months.

It’s important to keep in mind that only organ donor recipients are eligible for disability benefits. Live donors typically recover in a matter of weeks or months depending on the donation, so they will not meet the SSA’s basic definition of disability.

Qualifying Before a Transplant

If you are eligible for an organ transplant, it’s more than likely that you’ll have a condition that is severe enough to meet a Blue Book listing. Some conditions that could qualify include, but are not limited to:

Listings for organ failure in particular are highly complex and are best read by a medical professional. Your doctor can help determine if you qualify for disability benefits via the Blue Book, but again, if you are on the wait list for a transplant you shouldn’t have any difficulty qualifying.

Medical Care and Disability Benefits

Most Social Security recipients also receive Medicare. Unfortunately, there is almost always a 24-month waiting period for Medicare. This means that you will not be eligible for health insurance for a full two years after your condition became severe enough to qualify for disability benefits.

If you’re currently working and receiving health insurance from your employer, you may want to evaluate your options before applying. It might be very expensive to qualify for disability benefits if you do not have health insurance through a spouse.

There is one exception to this 24-month wait period—End Stage Renal Disease. If you have ESRD and are waiting for a kidney transplant, you will automatically be enrolled onto Medicare as soon as your Social Security disability application is approved.

Starting Your Application

Most people can file for Social Security disability benefits online on the SSA’s website. This is one of the fastest ways to apply, and someone can apply on your behalf if you’re too ill to use a computer. You can also apply at your local Social Security office. To schedule an appointment to apply in person, call the SSA toll free at 1-800-772-1213.

Most claims will be approved in a couple of months. Once you’re receiving benefits, you can spend the additional income on your health costs or transportation bills, living arrangements for your family after surgery, childcare, and any other daily living needs.

We offer special thanks for this article written for TRIO by:
Eric Minghella
Outreach Specialist
Disability Benefits Help

Note: to download a PDF version of this article,click here: Trio Philadelphia Chapter final SSA article


Stay tuned for December meeting (click image for live links)

9 Nov

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!


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 . . .”