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 Iondness Ior irises and sunIlowers, the
Iormer traditionally expressing the work oI messengers. Many close to
Carol knew her as an unassuming pillar, soItly working as she made sure
personal and proIessional duties were appropriately cared Ior. Gardeners
oIten work this way, scattering seed and shaping the land, the source oI
liIe and enrichment Ior the Ilowers they tend. They appreciate the sum oI their labor Irom a distance, not in
detachment, but in wonder and love oI how their Ilowers coalesce and bloom.

Carol planted more than her Ilowers this way. For her Iamily, Carol`s work was a constant message oI
a rare and tireless love. In times oI both peace and turbulence, her devotion and eIIorts, however humble,
lasted. 'It was quiet and unassuming. It was totally unselIish. She never did anything Ior herselI, said
George Johnson, Carol`s husband, who shared his liIe with her over the past 55 years. In that time beIore
her passing on February 3, 2014, Carol loved through a wealth oI quiet acts that continue to speak Ior her.

'When she made the decision not to have dialysis she asked each oI us iI it was okay, said Karen
Falco, one oI her two daughters. 'She wasn`t saying, I`m doing this.` She just said, Do you understand my
decision? Are you okay with it?` Everything about her was graceIul and loving. And iI you could be halI oI
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.
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TSO Officers

Co-Presidents
Ira Copperman
212-222-8386
irajay2004gmail.com
1anet Ocasio
845-582-0430
GKJPaol.com

Vice-Presidents
Helen Bellhouse
845-528-1782
hmbellhouseverizon.net

Gerard Marinaccio
917-709-7553
gpm316gmail.com

Treasurer
Gerard Marinaccio
917-709-7553
gpm316gmail.com

Secretary



Members-at-Large

Leonard Andrew
914-631-6530
lenlandrew.com

Glenda Daggert
212-222-8386
gdaggertgmail.com

Helen Harper
914-368-8159
helengharperoptonline.net

Madeline Marinaccio
Newsletter Editor
917-922-7029
mad705gmail.com

Suzane Sadofsky
914-737-5165
suzane6juno.com

Bill Seery
914-469-9196
det37k9gmail.com

Mary Wu
917-968-8856
mwu82yahoo.com

Professional Advisors
Mimi Greenman
924-493-7641
GreenmanMwcmc.com


TSO website:
www.transplantsupport.org

Director Emeritus
Karen Farkas
2 TSO Spring, 2014
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April 9 - Ronnie Schwartz and Maria Torres NYODN
Donor Family Services, "Personal Stories of
Communicating With Our Donor Families" -
Workshop Ior writing to our donor Iamilies.

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May 21 - Dr. David WolI, Liver Transplant Specialist
WCMC, 'What Is New in the World of Liver
Transplantation?`
1une 18 - Carol Segal; Physical Trainer, "Fitness With
Dvna-Bands"

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

!99,840 patients waiting Ior a kidney transplant.
"15,744 patients waiting Ior a liver transplant.
#"1,181 patients waiting Ior a pancreas transplant.
0"2,020 patients waiting Ior a kidney-pancreas transplant.
"""$255 patients waiting Ior an intestine transplant.
""3,833 patients waiting Ior a heart transplant.
"""$"47 patients waiting Ior a heart-lung transplant.
""1,650 patients waiting Ior a lung transplant.
121,918 TOTAL PATIENTS
"
Every 12 minutes a new name is added to the waiting list.


The Power of Advocacy
Dear TSO participants and Iriends oI TSO,
You never know how much muscle you have until you're
called upon to use it. And that describes the latest TSO
eIIort marshalling our Iriends to act on the Centers Ior
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 Iront burner. Because oI these kinds oI
actions Irom TSO and other groups like us, CMS withdrew its proposal to limit prescription
drug coverage Ior immunosuppressants.

Why was this so important to transplant recipients? Here are some basic Iacts:
Currently, Medicare covers all drugs Irom the immunosuppressant drug
classes. Immunosuppressant drugs are used to prevent the body Ior rejecting a
transplanted organ. Cutting back on these drugs would make transplants riskier.
CMS proposed limiting this coverage, which would mean more out-oI-pocket costs to
transplant recipients.
Private drug companies typically Iollow Medicare guidelines. ThereIore, this decision
would eventually aIIect all oI us, whether on Medicare or not.

Thanks to the number oI letters written to Senators and Representatives, we were able to get
CMS to step back Irom its plans to implement these new protocols. This will allow us and
our physicians to have the latitude to choose the best medications Ior each transplant recipient.

This is not the end; CMS can always come back anytime and try again. Your letters made a
diIIerence! Stay tuned Ior any Iuture similar attempts to limit our drug coverage.

TSO will continue to promote advocacy eIIorts 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 oI proposals that could impact us and the organ donation process.
Elsewhere in this issue oI our newsletter, there are many interesting articles including the myth
oI being too old Ior donation, TSO in the media, and a review oI our speakers during the Iirst
quarter oI 2014. Check out our speaker roster Ior the second quarter, including a review oI our
exciting program in recognition oI April`s 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 Ieedback and your active involvement.
We`re looking Iorward to seeing you very soon!
Ira Copperman & Janet Ocasio-Co-Presidents oI TSO
26006: >:.; 0-6 1:65<76405
TSO Spring, 2014 3


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4 TSO Spring, 2014
As usual, TSO had an interesting program schedule Ior the 1
st
quarter oI 2014.

In January, members oI TSO met to talk about goals and plans Ior the upcoming year.
There were many outstanding suggestions on how TSO can move Iorward. This was
our Iirst meeting at the Greenburgh Town Hall. For this meeting, the attendees brought
potluck reIreshments Ior the group.

Helen Irving, the CEO oI 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 Ior preservation oI heart and lungs and how GPS systems are
helping transplantation teams better manage the transportation challenges. The NYODN
preserves and readies kidneys Ior transportation in a special sterilized center at its oIIices
on 34
th
Street in Manhattan. Helen invited TSO Ior a tour oI the Iacility, which we are
considering Ior a Iuture meeting. Helen also mentioned that the United Network Ior
Organ Sharing (UNOS) is planning an allocation system Ior Iace and hand transplants.

On March 19, our speaker was Dr. Gregg Lanier, a cardiologist associated with Westchester
Medical Center. His topic oI discussion was 'How to Stay Heart Healthy AIter Transplant.
Actually, Dr. Lanier`s advice was applicable to everyone. He suggested good physical activity
and dietary practices to maintain a healthy liIestyle.
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Several Board Members were invited to attend a summit meeting oI 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 Irom Orange County, Long Island, Mt. Sinai Hospital, and other
groups interested in the message oI organ donation and registrations attended as
well as TSO. TSO heard presentations Irom NYODN staII members about the
marketing programs and plans that NYODN has been putting into place over the
last year, and were given a preview oI upcoming programs Ior 2014.

In addition, TSO and the other groups had an opportunity to present its activities
and accomplishments during 2013, along with its plans Ior 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 Ior
the support groups to meet and exchange ideas. We`re looking Iorward to our
next one with NYODN.


TSO Spring, 2014 5
The Town oI Greenburgh has been a great host to
TSO with our new meeting space at the
Greenburgh Town Hall. And the town has gone
even Iurther in helping TSO get its word out to the
public.

On January 15
th
, Judith Beville, the Town Clerk oI
Greenburgh, hosted her very Iirst 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 Ior
several weeks; Ior anyone interested in viewing it,
TSO has a recording available. Contact Ike
Copperman Ior a copy. Ms. Beville`s regular
program can be seen every Thursday on
Greenburgh local access channel.

Then, Paul Feiner, the Town Supervisor oI
Greenburgh, invited Janet Ocasio, Helen Harper,
Glenda Daggert, and Ike Copperman to an hour-
long interview on Mr. Feiner`s 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 oI organ donation and transplantation and
TSO`s mission Ior organ registration and public
education and awareness.

These 2 eIIorts are part oI TSO`s long-standing commitment to public awareness.
05. ?.4 0-6 3<:@

Janet Ocasio, Helen Harper, Glenda
Dagger t , and I r a Copper man
participated in an interview about
transplantation that covered the
history of TSO, the personal stories of
Janet, Helen, and Glenda and the
my t h s a n d mi 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 oI TSO, every April our oIIicers are elected to
serve one year terms, and one third oI our board is elected as well to serve
a 3 year term.

For our organization to continue to prosper, Iresh ideas and strategies need
to be given an opportunity to grow. ThereIore, iI you would like to be
considered Ior a position as an oIIicer or board member, contact Janet
Ocasio at 845-582-0430 or email her at gkjpaol.com.
6 TSO Spring, 2014


As with gardeners, the appreciation oI how they had worked Iollows the awe oI their handiwork.
'It`s somewhat now in retrospect, as we start talking like this, we really know the depth and width and
breadth oI exactly who she was, said, George. 'Like so many things in liIe you just accept them
because that`s how they are. But now you look back and I`m amazed.

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

A birthday card; a box oI 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 oI Iamily liIe that Carol proved her guiding hand. When her grandsons Christian
and Mike became Eagle Scouts, they asked her to create an award booklet Ior their ceremony, which she
conceptualized Irom scratch. It became a standard issue Ior the troop, which she continued making Ior
Iuture scouts. 'Growing up you don`t really realize how much other work she was doing because we Ielt
like the sole Iocus, said Christian. 'I didn`t realize how much other stuII she was doing programs and
digests Ior multiple groups. she was doing so much and made everyone Ieel like they were the center
oI attention.

Carol naturally carried this discipline into her proIessional liIe, which Iound her Iorging her own
path through a variety oI oIIice and community activities. 'She was a leader, iI you will, Irom the rear,
said George. 'She never got out there and shouted, 'You gotta do it this way! But there was a Iorce oI
will about her that made her a natural leader. Even in the conIines oI an oIIice job or local Girl Scout
meeting, Carol Iound empowering ways to make change through her tempered work ethic. In her years
as a typist, she helped her peers manage eIIorts to transition to electronic word processing without
Iormal training. 'She started doing things without consulting with people sometimes because she knew it
had to get done and iI you start asking who`s going to do it next, nobody will step up, he said. 'She got
things rolling.

It was that seemingly perIect balance between her home and work liIe that made Carol seem
omnipresent, her choices always reIlecting her Iamily`s needs. When oIIered the position to act as
secretary Ior a supreme court state judge, Carol reIused the position`s larger, 'solitary oIIice
obligations Ior opportunities that placed her in contact and conversation with people. Her work as a girl
scout leader and her active presence in the PTA aIIorded her the time to take care oI her daughters.
While the promise oI 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
oI her son Christian and Marianne`s daughter Samantha, Carol was torn over where to go. 'She didn`t
know who to be with, Karen laughed. These were the crucial decisions; the occasions that expressed
her standards oI loyalty and love.

Christian was Iurther convinced oI his grandmother`s 'consistency, recalling her or as he and his
siblings knew her, 'oma-- as a regular presence in his liIe, bundled in multiple sweaters in the Ireezing
cold during big games and always being there to pick him and his Iriends up Irom school, even when she
was tethered to a portable oxygen tank during times when her breathing issues Ilared up. 'You`ll hear
someone describe another person as helpless and it kind oI sounds empty, he said. 'But she was truly
selIless.

'She spent her time nurturing her children, said George. 'They got her Iull attention, so anything
she was doing at the time was peripheral to that. Girl Scouts, PTO, church activities. What`s essential
was the children. Even when Carol seemed to do it all, her truest passion never Iell Irom sight.
'Everything else she worked just as hard at, added Karen. 'But iI they needed her, that all could wait.
!"#$%#&'( "# *+ A


This was the type oI normal that Carol made Ior herselI and was determined to keep, even as her
liIelong lung complications worsened and organ transplant became a real consideration. Through years
oI research on then-nascent transplantation practices, preparatory courses and tests at Columbia Medical,
and Iour Ialse-alarm calls that had her immediate Iamily rallying to diIIerent hospitals throughout the
Northeast, Carol remained collected and active. 'Mom would say Don`t worry, it will happen,` Karen
said, it becoming her mother`s plainspoken wisdom as she and her sister helped scramble to get her
medical paperwork in order. Indeed, Carol`s words set the standard. AIter a 7-hour operation on
September 16, 2001, Carol became a successIul recipient oI a double lung transplant. Aside Irom a
couple minor hospitalizations, the Iollowing 10 years proved 'almost event-Iree, in George`s words.

AIter her transplant, Carol`s independent streak was Iiercer than ever, revealing an eagerness to
continue serving her Iamily and community. 'At the Iuneral my son Mike said aIter the lung transplant
we got Oma 2.0, said Karen. Carol began biking and being present in her grandchildren`s lives. Slowly
but surely, she continued gardening, redecorating her home with Iresh Ilowers Irom the backyard.
Having only supported Habitat Ior Humanity Iinancially beIore her transplant, she began to volunteer in
the construction oI homes, reIusing to let her condition deIine her while putting her best Ioot Iorward
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 Ior the newspaper |article on Habitat oI 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 didn`t want us to treat her diIIerently.

OI course, the work was completed in her own Iashion. 'She just went about it as she always did:
quietly, said George.

Carol also Iound new responsibilities with TSO, which she discovered through one oI 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 wasn`t about her, per se, added Marianne.

Transplantation gave Carol another 14 years to be herselI, without great hindrance or compromise.
It was another 14 years oI teaching her loved ones, planting acts oI selI-sacriIice and kindness that
helped them deIine their own lives. It let Carol grow deeper roots in the garden she most dearly kept.
The |grand| kids were Iour and six and eight when she had the transplant, and without that, would they
have remembered her? said Marianne. 'Now they`re 17, 19, and 21, and they will always remember her
and she had such an impact on their lives. they wouldn`t have known her the way they do.

Healthy roots grow long and Iull Ior decades to come. Carol spent her liIe bringing beautiIul things
to liIe; things that would continue to Ilourish through the Iamily she watched grow beIore her, Irom her
grandchildren`s lives to the new vocation George Iound in teaching teens about the importance oI organ
transplants.

'I Iound an outlet that was helpIul to me, but at the same time I just Ielt that there`s so much good
that can come out oI this and it gives me an opportunity to say thank you Ior the almost 14 years that we
had together that we would not have had, said George oI his mentoring. 'II I didn`t do something to
help somebody else move ahead and save those last 10 years or 12 years or 14 years; that`s why I`m
going to continue to do it. But this isn`t about me. Not at all. This is all about Carol. This is how
Carol`s message spreads: maniIold and kind-hearted, with evergreen strength.
7 TSO Spring, 2014


TSO Spring, 2014 8
The TSO membership year runs Irom January to December. II 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 oI Iunding Ior
all oI the activities that we provide as TSO does not receive Iunding Irom any government
agencies.
~Remember and Rejoice
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07. 8((7'3 9/7:-(2/'3 ;-.52/-
Come foin us as we 'Remember` our donors and their families who so generouslv
have given the 'Gift of Life` and 'Refoice` with recipients who have received this
special 'gift`.
Saturday, April 26th, 2014 at 2:00 PM
St. Patrick`s Cathedral
Fifth Avenue, between 50th & 51st Streets, New York, NY

For more inIo call Ira Copperman or Glenda Daggert: (212) 222 - 8386
or email them at: irajay2004gmail.com or gdaggertgmail.com



We`ve all been in conversations with Iriends, Iamily or even strangers at registration
events, and the statement is made 'Nobody wants my organs. I`m too old.

Well, here`s 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 oI donation
and transplantation. In her 80s, she signed up to be a cornea donor. And sure enough, last
week we got a call Irom the Eye Bank saying that her eyes and corneas had been accepted
Ior research.

So, we like to believe that her eyes will Iurther the eIIorts to eliminate retinitis
pigmentosa, or retinal tears, or eye cancers. Sure, her corneas didn`t go to someone to Iix
corneal blindness, but her eyes will have lasting eIIect in the area oI research. And we
should remember that research is a category that people can designate when they register
Ior organ, eye, and tissue donation.

For this reason and oI course Ior many others, we were Iortunate Ior her passion.
TSO Spring, 2014 9
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Our best wishes to all our 1SO friends and participants
who are celebrating re-birthdays in
April, May and 1une.
Our sincerest wishes for many more
happy and healthy years to come!


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NOO JEMM5EDF LPFAIFQ KJE4F /MLEA5Q AB NRSRT
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
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Our monthly meetings are held at the Creenburgh 1on Hall, ryy Hillside Aenue (just
north of -a8y at eit ,, Hillside Aenue). 1here is ample free parking at the 1on Hall and
it is accessible ia public transportation. Meeting time is y:oo p.m. (social) - y:,o p.m.
(meeting & program for the eening).

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TSO
TranspIant 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 - PIease check appropriate description

Donor ______ Donor Family Member______ Transplant Recipient ______ Transplant Candidate ________

Family Member _________ nterested ndividual ________ 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

ReguIar (Transplant recipient, transplant candidate, family member, donor family)

IndividuaI Participant $25.00
FamiIy Participant (2 or more members, same address) $35.00
ProfessionaI $25.00

PIease consider a voIuntary donation to heIp support TSO $______________
TSO Spring, 2014 11


T S O
T r a n s p l a n t S u p p o r t O r g a n i z a t i o n
1 3 3 5 M a c e A v e n u e
B r o n x , N Y 1 0 4 6 9
N E X T M E E T I N G : A p r i l 9 , 2 0 1 4


Transplant Support Organization`s Mission
1o hel p save l i ves by:
Providing education relating to organ donation and transplantation;
Promoting organ and tissue donation as an important social responsibility;
Civing support to transplant candidates, recipients, their Iamilies and donor Iamilies;
EIIectively communicating to government bodies and the general public, the concerns and
needs that aIIect the welIare oI those individuals impacted by the transplant process.