TRANSPLANT SUPPORT ORGANIZATION

Serving Westchester, Putnam, Dutchess, Bronx Counties and Southern Connecticut VOL. 19, ISSUE 2 SPRING, 2014

T S O

TSO Spring, 2014 1

Carol Johnson was a gardener. She worked with the Pleasantville Garden Club near her home in Valhalla, New York, and took pride in personalizing her second home on Cape Cod with a generous green thumb. She had a particular fondness for irises and sunflowers, the former traditionally expressing the work of messengers. Many close to Carol knew her as an unassuming pillar, softly working as she made sure personal and professional duties were appropriately cared for. Gardeners often work this way, scattering seed and shaping the land, the source of

life and enrichment for the flowers they tend. They appreciate the sum of their labor from a distance, not in detachment, but in wonder and love of how their flowers coalesce and bloom. Carol planted more than her flowers this way. For her family, Carols work was a constant message of a rare and tireless love. In times of both peace and turbulence, her devotion and efforts, however humble, lasted. It was quiet and unassuming. It was totally unselfish. She never did anything for herself, said George Johnson, Carols husband, who shared his life with her over the past 55 years. In that time before her passing on February 3, 2014, Carol loved through a wealth of quiet acts that continue to speak for her. When she made the decision not to have dialysis she asked each of us if it was okay, said Karen Falco, one of her two daughters. She wasnt saying, Im doing this. She just said, Do you understand my decision? Are you okay with it? Everything about her was graceful and loving. And if you could be half of that, it would be a big accomplishment. Her other daughter, Marianne Sickles, also witnessed that grace. Even the nurses commented on it, she said. They thought she was so brave and How many people do they see in a day? Talking to them in the hallway, they would have tears in their eyes because they were so sad. She was such a great person and it came across that quickly. continued on p. 6

This issue of Transplant Support Organization newsletter is dedicated to our board member and good friend, Carol Johnson. Carol was an incredibly dedicated and loyal board member and a long time member of TSO. Over the years she served TSO as Secretary to the Board, Newsletter editor, and Membership Chairperson. She was an active volunteer and no one could doubt her dedication to TSO and to the cause of organ donation.

HOW TO PLANT SEEDS BY ANDREW MARINACCIO

TSO Officers

Co-Presidents Ira Copperman

212-222-8386 irajay2004@gmail.com

Janet Ocasio 845-582-0430

GKJP@aol.com

Vice-Presidents Helen Bellhouse

845-528-1782 hmbellhouse@verizon.net

Gerard Marinaccio 917-709-7553

gpm316@gmail.com

Treasurer Gerard Marinaccio

917-709-7553 gpm316@gmail.com

Secretary

Members-at-Large

Leonard Andrew 914-631-6530

len@landrew.com

Glenda Daggert 212-222-8386

gdaggert@gmail.com

Helen Harper 914-368-8159

helengharper@optonline.net

Madeline Marinaccio Newsletter Editor

917-922-7029 mad705@gmail.com

Suzane Sadofsky 914-737-5165

suzane6@juno.com

Bill Seery 914-469-9196

det37k9@gmail.com

Mary Wu 917-968-8856

mwu82@yahoo.com

Professional Advisors Mimi Greenman

924-493-7641 GreenmanM@wcmc.com

TSO website:

www.transplantsupport.org

Director Emeritus Karen Farkas

2 TSO Spring, 2014

Transplant Support Organization meetings are held at 7 p.m. on the third Wednesday of the month (with some exceptions)

at Greenburgh Town Hall, 177 Hillside Avenue, White Plains, NY 10607

S c h e d u l e f o r M o n t h l y M e e t i n g s

7:00 PM Social Time 7:30 PM-9:00 Meeting and program for evening April 9 - Ronnie Schwartz and Maria Torres NYODN Donor Family Services, "Personal Stories of Communicating With Our Donor Families" - Workshop for writing to our donor families.

Future Meeting Agendas

May 21 - Dr. David Wolf, Liver Transplant Specialist WCMC, What Is New in the World of Liver Transplantation?

June 18 - Carol Segal; Physical Trainer, "Fitness With Dyna-Bands"

For directions to our meeting, donor registration form, and further information, please check our website: www.transplantsupport.org

To contact us by mail please write to:

TSO, 1335 Mace Avenue, Bronx, NY 10469

We are also on Facebook. Check us out for information and updates. You do not need to have a Facebook account to visit TSO on Facebook .

To all recipients of this newsletter. Please send your email address so we may notify you of any last

minute changes to our meetings. If you have changed your address recently please let us know so we can update our records.

Please send all correspondence to: Janet Ocasio - GKJP@aol.com

The UNOS National Patient Waiting List Candidates as of 3/30/2014

099,840 patients waiting for a kidney transplant. 015,744 patients waiting for a liver transplant. 101,181 patients waiting for a pancreas transplant. 002,020 patients waiting for a kidney-pancreas transplant. 000,255 patients waiting for an intestine transplant. 003,833 patients waiting for a heart transplant. 000,047 patients waiting for a heart-lung transplant. 001,650 patients waiting for a lung transplant. 121,918 TOTAL PATIENTS 0

Every 12 minutes a new name is added to the waiting list.

The Power of Advocacy

Dear TSO participants and friends of TSO,

You never know how much muscle you have until you're called upon to use it. And that describes the latest TSO effort marshalling our friends to act on the Centers for Medicare and Medicaid Services (CMS) proposal on immunosuppressants. TSO took a leadership role in writing letters to CMS, contacting legislators, involving members, and keeping the issue on the front burner. Because of these kinds of

actions from TSO and other groups like us, CMS withdrew its proposal to limit prescription drug coverage for immunosuppressants. Why was this so important to transplant recipients? Here are some basic facts:

x Currently, Medicare covers all drugs from the immunosuppressant drug classes. Immunosuppressant drugs are used to prevent the body for rejecting a transplanted organ. Cutting back on these drugs would make transplants riskier.

x CMS proposed limiting this coverage, which would mean more out-of-pocket costs to transplant recipients.

x Private drug companies typically follow Medicare guidelines. Therefore, this decision would eventually affect all of us, whether on Medicare or not.

Thanks to the number of letters written to Senators and Representatives, we were able to get CMS to step back from its plans to implement these new protocols. This will allow us and our physicians to have the latitude to choose the best medications for each transplant recipient. This is not the end; CMS can always come back anytime and try again. Your letters made a difference! Stay tuned for any future similar attempts to limit our drug coverage.

TSO will continue to promote advocacy efforts when there are public policy issues that impact our population and our health needs. We clearly see grassroots advocacy as an important responsibility and we will seek to work cooperatively with the transplant community as we will continue to be vigilant of proposals that could impact us and the organ donation process.

Elsewhere in this issue of our newsletter, there are many interesting articles including the myth of being too old for donation, TSO in the media, and a review of our speakers during the first quarter of 2014. Check out our speaker roster for the second quarter, including a review of our exciting program in recognition of Aprils National Donor Awareness Month. We also want to remind you that we are a volunteer organization and to accomplish our goals, we need volun-teers. Please sign up and volunteer. Contact us and tell us what your interests and ideas are. Let us know what you would like to do. We need your feedback and your active involvement.

Were looking forward to seeing you very soon!

Ira Copperman & Janet Ocasio-Co-Presidents of TSO

LETTER FROM THE PRESIDENTS

TSO Spring, 2014 3

TSO First Quarter Meetings Review

4 TSO Spring, 2014

As usual, TSO had an interesting program schedule for the 1st quarter of 2014.

In January, members of TSO met to talk about goals and plans for the upcoming year. There were many outstanding suggestions on how TSO can move forward. This was our first meeting at the Greenburgh Town Hall. For this meeting, the attendees brought potluck refreshments for the group.

Helen Irving, the CEO of the New York Organ Donor Network, was our speaker in February. Helen led an outstanding discussion on the technology activities in organ transplantation, including new techniques for preservation of heart and lungs and how GPS systems are helping transplantation teams better manage the transportation challenges. The NYODN preserves and readies kidneys for transportation in a special sterilized center at its offices on 34th Street in Manhattan. Helen invited TSO for a tour of the facility, which we are considering for a future meeting. Helen also mentioned that the United Network for Organ Sharing (UNOS) is planning an allocation system for face and hand transplants.

On March 19, our speaker was Dr. Gregg Lanier, a cardiologist associated with Westchester Medical Center. His topic of discussion was How to Stay Heart Healthy After Transplant. Actually, Dr. Laniers advice was applicable to everyone. He suggested good physical activity and dietary practices to maintain a healthy lifestyle.

TSO and the New York Organ Donor Network

Several Board Members were invited to attend a summit meeting of support groups hosted by the New York Organ Donor Network on Friday, March 14, 2014. Janet Ocasio, Helen Bellhouse, Glenda Daggert, Gerard Marinaccio, and Ike Copperman went to this meeting.

Representatives from Orange County, Long Island, Mt. Sinai Hospital, and other groups interested in the message of organ donation and registrations attended as well as TSO. TSO heard presentations from NYODN staff members about the marketing programs and plans that NYODN has been putting into place over the last year, and were given a preview of upcoming programs for 2014.

In addition, TSO and the other groups had an opportunity to present its activities and accomplishments during 2013, along with its plans for the new year. Lastly, there was a lively discussion about social media, including a hands-on learning session with Instagram.

These summit meetings are held once a year and are an excellent opportunity for the support groups to meet and exchange ideas. Were looking forward to our next one with NYODN.

TSO Spring, 2014 5

The Town of Greenburgh has been a great host to TSO with our new meeting space at the Greenburgh Town Hall. And the town has gone even further in helping TSO get its word out to the public.

On January 15th, Judith Beville, the Town Clerk of Greenburgh, hosted her very first local channel program with Helen Harper, Glenda Daggert, and Ike Copperman as the guests. Judith asked us to talk about organ donation and about TSO and its mission and activities. This program aired for several weeks; for anyone interested in viewing it, TSO has a recording available. Contact Ike Copperman for a copy. Ms. Bevilles regular program can be seen every Thursday on Greenburgh local access channel.

Then, Paul Feiner, the Town Supervisor of Greenburgh, invited Janet Ocasio, Helen Harper, Glenda Daggert, and Ike Copperman to an hour-long interview on Mr. Feiners regular radio and Internet streaming program on Friday, February 28, which broadcasts on WVOX AM1460. Again, Mr. Feiner asked us questions that helped us show the picture of organ donation and transplantation and TSOs mission for organ registration and public education and awareness.

These 2 efforts are part of TSOs long-standing commitment to public awareness.

TSO ON THE AIR

Janet Ocasio, Helen Harper, Glenda Daggert , and I ra Copperman participated in an interview about transplantation that covered the history of TSO, the personal stories of Janet, Helen, and Glenda and the m y t h s a n d m i s c o n c e p t i o n s surrounding transplantation. The participants also discussed the recipient waiting list and the process for registering with the New York State Donor Registry.

According to the bylaws of TSO, every April our officers are elected to serve one year terms, and one third of our board is elected as well to serve a 3 year term.

For our organization to continue to prosper, fresh ideas and strategies need to be given an opportunity to grow. Therefore, if you would like to be considered for a position as an officer or board member, contact Janet Ocasio at 845-582-0430 or email her at gkjp@aol.com.

6 TSO Spring, 2014

As with gardeners, the appreciation of how they had worked follows the awe of their handiwork. Its somewhat now in retrospect, as we start talking like this, we really know the depth and width and breadth of exactly who she was, said, George. Like so many things in life you just accept them because thats how they are. But now you look back and Im amazed.

Carol was born on June 8, 1938 in the Bronx, New York, the second of three children to Frederick and Anna Wellman, who emigrated from Germany in the 1920s. Though her upbringing was modest, she was raised from a line of matriarchs that provided in work and spirit beyond their means. It was from her grandmother and mother that she gleaned a particular standard of perseverance and rigor. Carol carried and expanded upon their traditions, like the annual Johnson family reunion, which her grandmother started 30 years ago and Carol maintained. It has always been family, said George. Shes the one who makes sure everybody gets the birthday cards and anniversary cards.

A birthday card; a box of always welcome homemade cookies shipped to her grandchildren during their college terms; attending every track meet and awards programs. It was through an uncompromised presence in the realities of family life that Carol proved her guiding hand. When her grandsons Christian and Mike became Eagle Scouts, they asked her to create an award booklet for their ceremony, which she conceptualized from scratch. It became a standard issue for the troop, which she continued making for future scouts. Growing up you dont really realize how much other work she was doing because we felt like the sole focus, said Christian. I didnt realize how much other stuff she was doing programs and digests for multiple groups she was doing so much and made everyone feel like they were the center of attention.

Carol naturally carried this discipline into her professional life, which found her forging her own path through a variety of office and community activities. She was a leader, if you will, from the rear, said George. She never got out there and shouted, You gotta do it this way! But there was a force of will about her that made her a natural leader. Even in the confines of an office job or local Girl Scout meeting, Carol found empowering ways to make change through her tempered work ethic. In her years as a typist, she helped her peers manage efforts to transition to electronic word processing without formal training. She started doing things without consulting with people sometimes because she knew it had to get done and if you start asking whos going to do it next, nobody will step up, he said. She got things rolling.

It was that seemingly perfect balance between her home and work life that made Carol seem omnipresent, her choices always reflecting her familys needs. When offered the position to act as secretary for a supreme court state judge, Carol refused the positions larger, solitary office obligations for opportunities that placed her in contact and conversation with people. Her work as a girl scout leader and her active presence in the PTA afforded her the time to take care of her daughters. While the promise of a career suited her innate diligence, Carol knew what mattered most to her, and acted accordingly. She was an independent thinker, said Karen. Recalling the near-simultaneous births of her son Christian and Mariannes daughter Samantha, Carol was torn over where to go. She didnt know who to be with, Karen laughed. These were the crucial decisions; the occasions that expressed her standards of loyalty and love.

Christian was further convinced of his grandmothers consistency, recalling her or as he and his siblings knew her, oma-- as a regular presence in his life, bundled in multiple sweaters in the freezing cold during big games and always being there to pick him and his friends up from school, even when she was tethered to a portable oxygen tank during times when her breathing issues flared up. Youll hear someone describe another person as helpless and it kind of sounds empty, he said. But she was truly selfless.

She spent her time nurturing her children, said George. They got her full attention, so anything she was doing at the time was peripheral to that. Girl Scouts, PTO, church activities. Whats essential was the children. Even when Carol seemed to do it all, her truest passion never fell from sight. Everything else she worked just as hard at, added Karen. But if they needed her, that all could wait. continued on p. 7

This was the type of normal that Carol made for herself and was determined to keep, even as her lifelong lung complications worsened and organ transplant became a real consideration. Through years of research on then-nascent transplantation practices, preparatory courses and tests at Columbia Medical, and four false-alarm calls that had her immediate family rallying to different hospitals throughout the Northeast, Carol remained collected and active. Mom would say Dont worry, it will happen, Karen said, it becoming her mothers plainspoken wisdom as she and her sister helped scramble to get her medical paperwork in order. Indeed, Carols words set the standard. After a 7-hour operation on September 16, 2001, Carol became a successful recipient of a double lung transplant. Aside from a couple minor hospitalizations, the following 10 years proved almost event-free, in Georges words. After her transplant, Carols independent streak was fiercer than ever, revealing an eagerness to continue serving her family and community. At the funeral my son Mike said after the lung transplant we got Oma 2.0, said Karen. Carol began biking and being present in her grandchildrens lives. Slowly but surely, she continued gardening, redecorating her home with fresh flowers from the backyard. Having only supported Habitat for Humanity financially before her transplant, she began to volunteer in the construction of homes, refusing to let her condition define her while putting her best foot forward towards service and change. She was shingling the house, she was using a saw cutting wood. She was hammering -- she was in seventh heaven! said George. The woman that took the pictures for the newspaper [article on Habitat of Humanity] up in Cape Cod said she had no idea that mom had a double lung transplant, said Karen. She never shared that. She just wanted to go back to her regular space and she didnt want us to treat her differently. Of course, the work was completed in her own fashion. She just went about it as she always did: quietly, said George. Carol also found new responsibilities with TSO, which she discovered through one of her visits to Columbia. Happy to meet other local post-op patients who shared her experiences, she took to editing the TSO newsletter and worked table events with zeal and engagement. She was a very strong advocate, said Karen, But it wasnt about her, per se, added Marianne. Transplantation gave Carol another 14 years to be herself, without great hindrance or compromise. It was another 14 years of teaching her loved ones, planting acts of self-sacrifice and kindness that helped them define their own lives. It let Carol grow deeper roots in the garden she most dearly kept. The [grand] kids were four and six and eight when she had the transplant, and without that, would they have remembered her? said Marianne. Now theyre 17, 19, and 21, and they will always remember her and she had such an impact on their lives they wouldnt have known her the way they do. Healthy roots grow long and full for decades to come. Carol spent her life bringing beautiful things to life; things that would continue to flourish through the family she watched grow before her, from her grandchildrens lives to the new vocation George found in teaching teens about the importance of organ transplants. I found an outlet that was helpful to me, but at the same time I just felt that theres so much good that can come out of this and it gives me an opportunity to say thank you for the almost 14 years that we had together that we would not have had, said George of his mentoring. If I didnt do something to help somebody else move ahead and save those last 10 years or 12 years or 14 years; thats why Im going to continue to do it. But this isnt about me. Not at all. This is all about Carol. This is how Carols message spreads: manifold and kind-hearted, with evergreen strength.

7 TSO Spring, 2014

TSO Spring, 2014 8

The TSO membership year runs from January to December. If you have not yet submitted your membership dues please use the attached application in this newsletter to submit as soon as possible. Membership is what drives this organization and is our major source of funding for all of the activities that we provide as TSO does not receive funding from any government agencies.

Remember and Rejoice TRIO Manhattan Chapter cordially invites you to attend

our Annual Ecumenical Service Come join us as we Remember our donors and their families who so generously have given the Gift of Life and Rejoice with recipients who have received this

special gift.

Saturday, April 26th, 2014 at 2:00 PM St. Patricks Cathedral

Fifth Avenue, between 50th & 51st Streets, New York, NY

For more info call Ira Copperman or Glenda Daggert: (212) 222 - 8386 or email them at: irajay2004@gmail.com or gdaggert@gmail.com

Weve all been in conversations with friends, family or even strangers at registration events, and the statement is made Nobody wants my organs. Im too old.

Well, heres a story that you can tell to respond to that statement. My mother just passed away. She was 94 years old. But she had a passionate interest in the subject of donation and transplantation. In her 80s, she signed up to be a cornea donor. And sure enough, last week we got a call from the Eye Bank saying that her eyes and corneas had been accepted for research.

So, we like to believe that her eyes will further the efforts to eliminate retinitis pigmentosa, or retinal tears, or eye cancers. Sure, her corneas didnt go to someone to fix corneal blindness, but her eyes will have lasting effect in the area of research. And we should remember that research is a category that people can designate when they register for organ, eye, and tissue donation.

For this reason and of course for many others, we were fortunate for her passion.

TSO Spring, 2014 9

YOURE NEVER TOO OLD BY IRA COPPERMAN

Happy Re-birthday to You!

Our best wishes to all our TSO friends and participants who are celebrating re-birthdays in

April, May and June. Our sincerest wishes for many more happy and healthy years to come!

DIRECTIONS TO GREENBURGH TOWN HALL 177 HILLSIDE AVENUE, WHITE PLAINS, NY 10603

By car: Take I-287 (Cross-Westchester Expressway):

Traveling east: Take Exit 4 - towards Hartsdale. Turn LEFT onto 100A North/Knollwood Rd. Turn RIGHT onto Old Tarrytown Rd. Where Old Tarrytown Rd. ends at Hillside Avenue light, go straight ahead into parking lot of #177, the Greenburgh Town Hall.

Traveling west: Take Exit 5 - Rt. 100/Rt. 119 Exit and turn RIGHT onto Rt. 100/Hillside Ave. Go to #177, turning right at the first light into the parking lot.

10 TSO Spring, 2014

TSO Wants You! We encourage you to participate in our meetings and activities. Recipients, caretakers, living donors, donor families, and interested individuals are all members of our organization. In addition to our meetings, there are numerous volunteer activities we can offer to you.

For further information, please check out our website:

www.transplantsupport.org.

You can also find us on Twitter and Facebook. Check out:

https://www.facebook.com/pages/Transplant-Support-Organization/158539687509?fref=ts

https://twitter.com/TSO_Support

And you can always contact us via email at: email4tso@gmail.com

Our monthly meetings are held at the Greenburgh Town Hall, 177 Hillside Avenue (just north of I-287 at exit 5, Hillside Avenue). There is ample free parking at the Town Hall and it is accessible via public transportation. Meeting time is 7:00 p.m. (social) - 7:30 p.m. (meeting & program for the evening).

JOIN US AND BE A PART OF THE DISCUSSION AND THE PLANNING. MAKE TSO YOUR ORGANIZATION!

TSO

Transplant Support Organization

Participant Application: New Renewal

Please fill out this form and mail it with your tax-deductible contribution to: TSO, 1335 Mace Avenue, Bronx, NY 10469

NAME(s): Mailing Address: Phone # - Daytime: Evening: Cell: Email: PERSONAL INFORMATION (optional) Birth Date: Sex: Marital Status: Occupation: CANDIDATE / RECIPIENT INFORMATION Please check appropriate description Donor ______ Donor Family Member______ Transplant Recipient ______ Transplant Candidate ________ Family Member _________ Interested Individual ________ Professional ____________ Have you already had a transplant? Yes _______ No _______ Type of Transplant(s) Date of Transplant Where did you (will you) have your transplant? PARTICIPANT CATEGORIES & SUGGESTED CONTRIBUTIONS Regular (Transplant recipient, transplant candidate, family member, donor family) Individual Participant $25.00 Family Participant (2 or more members, same address) $35.00 Professional $25.00

Please consider a voluntary donation to help support TSO $______________

TSO Spring, 2014 11

TSO

Transplant Support Organization

1335 Mace Avenue

Bronx, NY 10469

NEXT MEETING: April 9, 2014

Transplant Support Organizations Mission To help save l ives by:

x Providing education relating to organ donation and transplantation; x Promoting organ and tissue donation as an important social responsibility; x Giving support to transplant candidates, recipients, their families and donor families; x Effectively communicating to government bodies and the general public, the concerns and

needs that affect the welfare of those individuals impacted by the transplant process.