Issue 08 | Summer/Fall 2015
Kidney Transplant Recipient
You can have the gift of life.
Georgia Regents Medical Center has a dedicated transplant program that’s second to none. Our experienced physicians offer the most comprehensive care in the region and treat patients from all over the state and the Southeast. We provide the latest procedures and advanced technology for kidney and pancreas transplants, so we can give our patients a better chance at getting a second chance.
Visit grhealth.org/transplant today.
THE DIRECTOR Enriching Lives Everyday….that has been GTF’s goal since we first began in 1992. We strive to meet the needs of the transplant community in Georgia. Sometimes that means we make a house payment, or pay an electric bill or whatever emergency has arisen due to the costs involved with having a transplant. Every year we reevaluate our programs to make sure all the needs are being met. We can help with everything from paying for your prescription medications to keeping your insurance. If you travel a long distance to go to the transplant clinic we can even help with transportation costs. Probably one of the most important financial programs we have is the Transplant Fundraising Program where we help you get “access to transplant” by matching the funds you raise up to $10,000.
Executive Director • Pat Rotchford 678.514.1173, email@example.com Finance Director • Lisa Carlotta 678.514.1171, firstname.lastname@example.org Director, Patient Services • Sandy McMath, LCSW 678.514.1172, email@example.com Director, Marketing and Communications • Rita Michaels, MA 678.514.1180, firstname.lastname@example.org
Sometimes enriching lives is about more than writing checks. It is about reaching out to individuals to let them know they aren’t alone or to help them understand everything about transplantation. That is what our Mentor Program and Educational Programs are for. Perhaps you are ready to go back to work and need a little help making that first step. JumpStart is there to help with that.
Director, Development and Community Relations •
We feel pretty confident that we are doing everything we can to “enrich lives everyday.” However, last year a man approached me at our Atlanta Trends in Transplant Conference and raved about the information we were sharing with the community at the conference, but pointed out that his parents couldn’t understand a word that was being said so they were going to leave. His parents are Hispanic and his words have haunted me since last year.
In researching the needs of the Hispanic community I found that Hispanics, who are among one of the fastest-growing racial groups in the United States, are twice as likely to develop kidney failure as non-Hispanic whites, largely due to the increased prevalence of diabetes in the Hispanic population. Transplantation is the treatment of choice for patients with ESRD (end stage renal disease) being associated with better patient survival than dialysis. Currently 23,000 people are on dialysis in Georgia. More than 14% of those are Hispanic and yet only 165 Hispanics are currently listed for transplant.
Cheryl Belair 678.514.1181, email@example.com Manager, Patient Services • Rebekah Moshiri, LMSW
Manager, Transplant Fundraising Program • LaTonia Patterson 678.514.1170, firstname.lastname@example.org Director, JumpStart Program • Vivian Tomlinson, MS 678.514.1178, email@example.com Manager, Patient Outreach • Martie Rudd 678.514.1187, firstname.lastname@example.org
My confidence that we are doing everything we can has dwindled considerably. I am asking for your help as I reach out to the Hispanic community to let them know that dialysis isn’t the end of the line for them. Through our educational and financial programs transplant can be a reality to anyone who seeks it in the state of Georgia. That was the wish of Marguerite Mason who set up the Carlos and Marguerite Mason Trust that funds our patient programs as well as the wish of Tommy Smith, GTF’s founder. We have a lot of work to do! I am confident that we can make a difference in the lives of so many by translating our information into Spanish as well as holding a Trends in Transplant Conference next Spring that will be completely be in Spanish. I look forward to reporting back to you that we had a huge turnout at the conference and that considerably more than 165 Hispanics are being listed for “enriched lives” through transplantation!
500 Sugar Mill Road, Suite 170-A Atlanta, Georgia 30350 770.457.3796 770.457.7916 (fax) email@example.com www.GaTransplant.org
Executive Director Imprint Magazine
GTF PROGRAMS 06 Housing Assistance 06 What It Means to be a Mentor 07
Training Beyond the Curriculum
Living Kidney Donation
Interview with Phyllis Silverstein
Celebrating 30 years with a new heart transplant
PROVIDING SECOND CHANCES
HAS ALWAYS BEEN OUR
FIRST PRIORITY. Piedmont Transplant Institute Since 1986, Piedmont has been among the best in the nation for successful transplants, giving patients new hope that’s backed by exceptional outcomes and leading-edge research. From significantly shorter recipient wait times to pioneering robotic live-donor kidney transplants in Georgia, we continue to lead the way with compassionate care you can depend on. Atlanta I Albany I Dalton I Macon I Marietta I Savannah
For more information, call 855.908.3933 or visit piedmonttransplant.org © 2015 Piedmont Healthcare 02974-0415
WHAT IT MEANS TO BE A
MENTOR Simply stated, a mentor is someone who shares knowledge learned through experience with someone else needing that knowledge. Since 1996, the Georgia Transplant Foundation’s Mentor Project has had the privilege of mentoring over 2,000 people: transplant candidates, recipients, their parents and spouses, and living organ donors. Many people find the support of a mentor
so beneficial they want to become mentors themselves. As one transplant recipient states, “My mentor helped me understand my feelings were normal. I could call her anytime and she always listened and understood. She didn’t tell me it would be OK, like everyone else was doing. She knew she couldn’t promise that. But, she had made it and that gave me hope. She became my lifeline to the possibility that things would get better for me too. I knew
any recipients, candidates and family members require housing in their transplant center area related to their medical care. These recipients/ candidates often lack the resources to afford housing costs in addition to the routine expenses for their permanent homes. Additionally, there are housing needs that arise with follow-up care and unexpected complica-
tions, and many patients and families cannot afford this cost. There are no other programs or funds that provide this housing assistance. The goal of the Housing Assistance Program is to provide financial assistance to residents of Georgia who are UNOS listed for transplant, recipients or family members who require housing related to transplant care. The housing program is not meant to take the place of pre-transplant planning and requests for post transplant assistance will not be approved pre-transplant. Additionally, the program is not intended to address short-term/on-going follow up visits to the transplant center. For more information about GTF’s Housing Assistance Program, please contact your transplant center social worker or visit www.gatransplant.org.
I wanted to do the same for someone else one day.” The Mentor Project began when a group of transplant recipients and spouses came together for a day of sessions. Since then there have been changes, but the overall goals remain the same: to establish guidelines of accountability for the mentoring relationship, to provide a clinical review in several key areas, and for each individual to discover how to most effectively share his or her transplant experience with others. For more information, please contact Martie Rudd at (678) 514-1187 or MRudd@GATransplant.org.
Who is Eligible:
went to his transplant
• Individuals who have
center to be
completed an evaluation
evaluated for a transplant,
for transplant and need
he was introduced to a
to fundraise to support
confusing world of medical
the cost of transplant
terminology and processes.
medications or insurance
deductibles, out-of-pocket expenses, PPO, HMO…the
• Individuals who are
list goes on and on.
eligible for a kidney, pancreas, liver, lung, heart,
and small bowel transplant.
coordinator guided him through the process and instructed him to review his current insurance coverage – the first step to ensure being financially
Residents of Georgia with proof of residency during the last 12 months.
prepared for a transplant. By doing this, gaps in insurance coverage are identified. For Jamal, and many other transplant
Individuals must apply and be accepted into the Transplant
candidates, these gaps are startling and require extensive
Fundraising Program prior to transplant.
planning to ensure a successful transplant. Fortunately, Jamal’s transplant coordinator also informed him of the Georgia
Jamal realized that while he had some coverage for transplant
Transplant Foundation’s Transplant Fundraising Program.
needs, it was far from adequate and would likely change when he retires in a few years. He enrolled in the Transplant Fundrais-
The Transplant Fundraising Program is a matching funds
ing Program and began to talk to friends and family about fund-
program that helps transplant candidates who need to
raising ideas. His church, fellow employees, and the community
fundraise to pay for the high costs of post-transplant
of Augusta rallied behind Jamal. Together, they have almost
prescription medications and insurance premiums. The goal
completed fundraising for a $10,000 match!
of the program is to make fundraising for transplant needs attainable. GTF provides up to $10,000 in matching funds
For more information about the Transplant Fundraising
to increase the total funds raised. Fundraising materials and
Program, visit our website at www.gatransplant.org or contact
creative suggestions to raise money are provided through
LaTonia Patterson at firstname.lastname@example.org or by calling
TRAINING... BEYOND THE CURRICULUM JUMPSTART PROGRAM
eferral to training resources
• Enhances and updates your resume to
are a vital service offered
help you become more marketable.
• Provides networking opportunities. Training classes can provide a time
to JumpStart clients. Due to
Short term training is a great way
to talk with people and build rela-
the challenges posed by an
to help fill your gap in employment.
tionships. Let’s face it, 90% of jobs
organ transplant many recipients must
Recruiters admit that when looking
are found through networking con-
change careers; therefore, they may need
at two resumes (one with current
to expand their skill set. Transplant can-
experience, one with a gap) they
didates and recipients can also update
always went for the current one.
their skills to help them become more
• Boosts your confidence. Many transplant recipients who
marketable. As an example, updating
• Helps with a smooth transition from
have been out of the workforce for
computer skills is extremely important to
home to re-entering into the workforce.
a period of time find getting active
stay current in the job marketplace.
This gives a transplant recipient
through an educational center can
time to build their stamina until
boost their confidence and give
When you think about training, let’s con-
medically released to return back to
them a sense of mastery.
sider ALL the benefits:
full-time employment. • Keeps your mind sharp.
• Provides productivity while in transi-
• Opens the door to Internship/
Studies show that continued
tion for the future.
education, through middle age
Transplant candidates can make the
Did you know that Internships and
and beyond, can keep the mind
most of their time while waiting for
Apprenticeships are vitally important
sharp and reduce dementia and
a transplant and recipients while
to landing jobs today? Both of these
Alzheimer’s disease. Also, keeping
recovering from their transplant by
opportunities count as legitimate
your mind sharp will keep opportu-
acquiring training for their career.
nities knocking on your door.
JUMPSTART TRAINING COMMUNITY PARTNERS Technology Association of Georgia (TAG) TAG’s mission is educating, uniting, promoting and influencing Georgia’s technology community for personal, professional and business growth. For more information, contact Amelia Baer at 404-920-2037.
Technical College System of Georgia (TCSG) Georgia’s adult learners who want to improve their basic skills in reading, writing, computa-
JUMPSTART’S APPRENTICESHIP PROGRAM
tion and speaking have easy access to free adult education and GED preparation classes through
The JumpStart Apprenticeship Program provides clients the oppor-
TCSGA. For more information call: (404) 679-1645
tunity to receive on-the-job training in a variety of work settings.
or (800) 946-9433.
These apprenticeships also allow clients to develop new skills, address gaps in employment, and strengthen their resume, all while increasing opportunities to receive permanent employment. For more information about the Georgia Transplant Foundation’s JumpStart Program, please e-mail us at jumpstart@gatransplant. org or call (678) 514-1174, or visit: www.gatransplant.org.
Georgia Perimeter College (GPC) GPC is one of the five largest institutions in the University System of Georgia and the top associate-degree-granting institution in Georgia. GPC has five locations in metro Atlanta and offers services for students with disabilities. For more information about disability services, contact Dr. Michael Anderson at 770-274-5235.
LIVING KIDNEY DONATION
By Joshua H. Wolf, MD Transplant Nephrologist, Piedmont Transplant Institute
urrently there are over 100,000 people waiting for a kidney transplant in the United States and over 4,500 here in Georgia. There are two main options for them when seeking a kidney transplant. The
first is waiting for a deceased donor kidney transplant. In Georgia, the waiting time for a kidney off the deceased donor waiting list can be anywhere from three to eight years, depending on the potential recipient’s blood type. These kidneys have a half-life of approximately eight years – this means that 50% of those who receive a kidney from a deceased donor will have a functioning transplant at this time. Some kidneys will last lon-
appointments for the first few weeks. Third, a living donor kidney lasts longer. Studies have shown that the half-life of living donor kidneys is on average 14 years, which is significantly longer than eight years for a kidney from a deceased donor. Potential transplant recipients have told me that their friends and family members have expressed reservations about donating a kidney out of fear that they may end up with kidney
ger and some shorter.
The second option is living donation. There are three distinct advantages with living donation: First, You don’t have to wait on the list for years. Once you have a living donor and that individual successfully completes a living donor evaluation the surgery can be scheduled. This usually happens in one to four months, depending on how quickly all required testing can be completed. Second, you can plan your life around the surgery – the transplant won’t plan your life. With living donor transplantation you set the date for the surgery ahead of time. This allows you to tell your employer which days you will need to take off of work as well as give your family members and friends advanced notice to take time off to assist you in bringing you to and from your clinic
DR. JOSHUA WOLF
disease and progress to needing dialysis. This is an unfortunate misconception. A study in the New England Journal of Medicine in 2009 showed that the long-term survival and risk of going
things: 1. “Wow, good luck. I hope you find someone who can help you.”
on dialysis in those who donate a kidney (thus living with only
2. “People can donate a kidney? I thought that if you donate a
one kidney) is similar to the general population who have two
kidney, then there is a good chance you will have to go on
functioning kidneys. Also, transplant centers will NOT let anyone
dialysis in the future?”
donate a kidney if the center feels they have an increased risk of developing kidney disease during their lifetime.
Now if you receive response #1, then you’ve lost nothing, as you are no worse off than you currently are reading this article.
At Piedmont Transplant Institute, we have all prospective living donors complete a two-day evaluation process before accepting
However, if you receive response #2 then you have reached a
them as a living donor. During this evaluation they will meet a
very important place as the person you are speaking with is
transplant nephrologist, dietician, social worker and a psychia-
expressing an interest in donation. At this point you need to be
trist; complete a battery of comprehensive labs, including a Glofil
“armed” with information to tell this prospective donor about
test, which is a very accurate way of measuring their kidney
kidney donation. The key points you want to convey are the fol-
function as well as a CT scan of their abdomen and pelvis so
that our surgeons have a detailed view of their kidney anatomy.
1. The risk for complications in living donors is very low.
Only after the prospective donor meets all of the above individu-
2. Almost all people who donate a kidney leave the hospital
als and completes the above tests can we determine if they are an acceptable candidate. In general, prospective living kidney donors should not be overweight or have diabetes. At our center, we usually abide by a BMI cutoff of 30. We also evaluate other
within 24-48 hours. 3. There is a short recovery time and by 6 weeks almost every kidney donor has returned to all their previous activities 4. The transplant center will not allow someone to donate
criteria, such as blood pressure, kidney function, and overall
a kidney if they think there is any chance that person will
have health problems with one kidney throughout the rest of their life.
All potential living donor candidates are evaluated at our trans-
5. The recipients’ insurance pays for the donor evaluation,
plant center. Often times, we can find ways to assist with travel
surgery, and post-donation care: You can even joke and say
costs (thank you Georgia Transplant Foundation!) for those can-
“You can get a ‘million dollar’ medical workup on my insur-
didates who live out of state.
ance!” 6. Between one-third and one-half of transplants are through
Approaching and then asking someone about donating a kidney
a living donor, and most large centers have their own trans-
can be an overwhelming and difficult task. Many people are con-
plant inpatient unit staffed with transplant nurses, surgeons,
cerned that discussing living donation with a family member or friend could compromise their relationship with them. Therefore,
nephrologists, social workers, dieticians, etc. 7. Have the contact number for your coordinator available to
I have some simple advice on approaching someone about kid-
give to your potential donor(s) as a transplant center can-
ney donation that may take the “awkwardness” out of this con-
not solicit donors – the potential donor must initiate first
Friend/family member: “Hey ‘potential recipient’ how are things
Donating a kidney is the best gift anyone could ever give. If
you are on the waiting list for a kidney transplant and would like more information then don’t hesitate to pick up the phone
Potential recipient: “OK, I guess. I recently went to Piedmont (or
and call your transplant coordinator. If you approach family and
insert transplant center name) and had an evaluation for kidney
friends and they cannot donate to you because of medical rea-
transplant. My doctor told me how this surgery will give me a
sons, don’t be afraid to have them be your advocates by talking
longer and better life, and then urged me repeatedly to try my
to others about being your donor. To those who are reading this
best and find someone to donate a kidney to me as this is my
article and waiting for a kidney transplant, I wish you all the
best and hope you will take this information and use it as a way to try and locate a potential living donor. We all have only one
At this point, your family member or friend will say one of two
life to live – let’s make the most of it! Imprint Magazine
What To Expect And What Is Expected Of You by Brian Rudd
y name is Brian Rudd and I am a Kidney and Pancreas transplant recipient. I was a Type I Diabetic for 38 years. I had a heart attack, a stroke and was going blind. In those
38 years, I had taken over 60,000 insulin injections; let that sink in a bit. So when I was given the chance for a cure, I took it. With the motivation of being cured of diabetes and not having to go into dialysis, I decided I would do everything I could to help the medical staff help me. Through my journey, I asked everyone from the lab technicians to the doctors to the nurses, coordinators, social workers and services personnel, what could patients do to make their own journey easier, what to expect and what is expected of them. The following is a list of do’s and don’ts, tips and tricks and just plain common sense suggestions to help you from your first day of evaluation to living successfully as a transplant recipient. First off, let me say this; I am NOT a doctor, I am NOT a nurse and in no way will I be giving medical advice or endorsing any medical facility, medical procedure or drug. I am just like you! Let me preface everything you see here with a rule that I will emphasize by capitalization:
DO NOT TAKE ANY MEDICAL ADVICE FROM ANYONE EXCEPT FROM YOUR TRANSPLANT TEAM AND DO NOT EVER GIVE ANY MEDICAL ADVICE. 12
Let’s get started. If you are anything like
not following the medical advice or your
want to call the financial coordinator
me, transplant was just a word until you
medical team, how can the transplant
regarding a change in a prescription do
were faced with it and as my father would
team expect you to be compliant with
so eloquently phrase it, “feel like a ball
taking care of your new organ(s)? If for
lost in high weeds.” If this is one of the
any reason you are using tobacco prod-
Please, PLEASE, PLEASE keep your con-
first things you are reading, I pray it gives
ucts or illicit drugs, stop now. The medical
tact information up to date with your
you peace of mind and a path to follow
teams now have tests that can detect
transplant team. I know of one instance
along with a bit of insight.
use of either from six months back. Most
of a person getting the call but they had
transplant centers will not continue with
changed cell numbers the day before.
an evaluation until you have quit for six
They did not update their contact infor-
This is the first step in the transplantation
mation for a month afterward and was
process where the transplant team will
told they had missed two calls for trans-
evaluate you for medical, emotional and
You will need to develop a support team;
financial readiness. Evaluation is typically
friends, family and coworkers who will
an all-day event, plan accordingly. Bring
assist you in your journey. Let me tell you,
You are going to have lots of visits to the
a lunch or money for same. I also suggest
you cannot do this by yourself and if you
transplant center. Get to know the Patient
a good book, laptop or tablet as well as
have to, ask. People are usually more than
Services Team. These are the nice folks
its charging cable. Bring someone from
happy to help especially in a venture such
who check you in. Please be nice to them
your support team with you. There will
as yours. Your support team will be those
as they can be your greatest allies in
be a lot of information and it may seem
who will get you to appointments after
helping to get things done.
overwhelming. Having someone with you
the transplant and assist in your recovery.
will insure you get all pertinent information. You may be asked to visit different
When it comes to the evaluation and doc-
You MUST maintain a Financial Plan not
departments e.g. radiology or cardiology.
tor appointments, show up on time, every
just for the cost of surgery but also for
If a medical department is running late,
time. Better yet, show up early. As I went
the ongoing costs of medication. Yes, the
don’t freak out. Your transplant team
through my process, many times I was
medication is expensive and yes, you
is usually aware of delays from other
able to see the doctor earlier than my
will be taking it for the rest of your life.
departments and makes the necessary
appointed time because I had shown up
However, in most instances, the amount
changes. You will meet many different
early and someone else was running late.
and number of each medication decreases
patients in varying stages of their journey.
as they fine-tune the amounts your body’s
Just remember, everyone has a different
You will most likely be given a transplant
needs. Let me tell you, I have a far better
story and yours will be different as well.
plan. This is a form that you will fill out
quality of life as well as vastly improved
Listen, ask and share but do not make
with your personal and family medical
health because of it so it is imperative to
decisions about your journey based on the
history, insurance information, medication
be ready for the expense.
journey of others. Get names, titles, and
list and other pertinent information. My
contact information for everyone involved
wife and I decided we would fill out one
Numerous patients have been turned
in your transplant process. You must be
page a day. In many instances, we were
down at the point of transplant due to
proactive with the transplant process and
able to fill out multiple pages. Regarding
lapses in insurance. This typically hap-
be an active member in your own health
your current medications, you can find all
pens when a premium does not get paid.
care. Think of it as you are the quarter-
the information you need on the bottle.
I personally saw an individual get the call,
back on a football team. You cannot score
go all the way to the hospital only to be
without your team but your team needs
You will meet a lot of people, that is a
informed their Medicaid had not been
you “in the game,” actively participating to
given. Get each and every one of their
paid and therefore, unable to go into sur-
make the touchdown.
contact information, title and what their
gery. The next person on the list was then
responsibilities are in your journey. Hint:
called and transplanted.
I cannot not stress enough how impor-
Ask for their business card or bring a note
tant it is to be compliant regarding your
pad and ask them to write it down. That
Not to belabor a point but it is important
health. If you are not taking your medica-
way, you know whom to contact regard-
to stay on top of your pharmacy/drug plan
tions, not following dietary constraints or
ing each aspect of that journey. You don’t
too. These plans can change as well and
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(continued from page 13)
be near death. Please, find a babysitter,
called. Mind you, I am no germanophobe
ask someone in your support group or a
but I want you to think about something.
there have been instances where a plan
relative to watch them. As a bonus, you
The average person touches their face
covers the immunosuppressant drugs but
will not be distracted from the informa-
subconsciously every three to five min-
changed while a patient was waiting for
tion your doctor or nurse has for you.
utes. With that in mind, think about that pen you just used to sign in. How many
transplant. After a successful transplant,
Place your cell phone on vibrate and
people have used that same pen before
they discovered their insurance no longer
if you have to; take or make your call
you? What guarantees do you have that
covered the needed medication. It is easy
away from other patients. Everyone
the person before you had not just been
to see that it is important to stay on top
thinks they have the coolest ringtone
the rest room or changed a baby’s dirty
of what your insurance and drug plans do
ever but please, it does not need to be
diaper and then washed their hands?
shared in a room full of sick people.
You don’t. Streptococcus, staphylococcus,
Take or make calls where no one else
pneumococcus and E-coli can live on
WAITING ROOM ETIQUETTE
can hear you. It is safer and just good
surfaces for days. The average person’s
While in the waiting room, I witnessed
immune system can usually ward off
many examples of bad manners and
most of these attacks but when you are
just plain selfishness. I also spoke to the
For person-to-person conversations,
immunosuppressed; that is another story.
Patient Services Team and asked about
keep the volume low. I walked into
Get in the habit of using hand sanitizer
what they had seen and experienced. The
the waiting room one afternoon and
as well as hand washing. These two
waiting room is an inevitable part of the
immediately noticed something very
habits are the best weapons you have
transplant journey. Let’s all try to make it
strange. Everyone there was silent
against getting sick.
a bit nicer for each other.
except for two couples discussing both husbands’ liver transplants. They were
I’M LISTED. NOW WHAT?
If you arrive with a cold, sneezing or
comparing “horror stories” and discuss-
Let me take a moment here to explain
coughing, use the provided masks to
ing how much pain they experienced. I
something about the “Wait List.” In real-
cover up. They are not there to protect
looked around and saw one patient in
ity it is actually a “Wait Pool.” This pool is
you from getting sick; they are there to
tears and others visibly disturbed. As I
determined by a lot of factors including
keep you from getting other people sick.
approached the two couples, I watched
but not limited to your blood type, pri-
Remember, the waiting room is occupied
as one patient left the waiting room,
mary genetic markers and your antigens
with patients who are immunosuppressed.
visibly shaken by what they heard. I
(how well your body fights off foreign
In other words, it is really easy for them
asked the two couples to either keep
bodies). There are several levels to the
to get sick. Not only that but when they
their voices at a level that others would
wait list. The following is a brief descrip-
do get sick, it could be more difficult to
not hear, change the subject or take the
tion of each:
conversation to an area where subject matter of this sort would not affect
PENDING: used by some centers while
At the time of this writing, I have two
others around them as this was not a
you are under evaluation or raising funds.
children and five grandchildren. However
conversation to have in an open and
much I love them and love being around
particularly sensitive forum. When they
them, this must be said. Do not bring
realized the entire waiting room could
small children to evaluation, appoint-
not help but listen due to their volume,
INACTIVE: still gaining wait time credits
ments or to the hospital. It is a known
the subject matter was dropped.
but will NOT receive a call until status
ACTIVE: actively waiting for the call.
medical fact that children carry far more
is upgraded to ACTIVE. This can be for a
infections than adults. By introducing
Use hand sanitizer with extreme preju-
myriad of reasons e.g. out of date medi-
children to an immunosuppressed envi-
dice. It must contain 65% alcohol. Here
cal information, loss of funding, etc.
ronment is a bad idea in anyone’s book.
is a thought that will probably make you
Children also get bored, fussy, hyper or
go “EWWWW!” You walk into the waiting
ON HOLD: taken off ACTIVE for a short
loud. This is not conducive to a room with
room, the person at the counter greets
period of time but still accruing wait
many of the occupants who are not feel-
you with a warm smile. You smile back,
time. This could possibly be for a tempo-
ing well and some of them may literally
sign in and have a seat to wait being
rary medical condition such as a cold, flu Imprint Magazine
(continued from page 15) or for having to take an antibiotic. Once an organ becomes available that is
friends, family and your mentor to help
Defer to your transplant team for ALL
maintain a healthy and positive attitude
medications. This is true for even over-
and outlook. I cannot tell you how impor-
the-counter medications. There are cer-
tant your outlook is in determining your
tain drugs you can and cannot take. For
instance, because one of my transplant
the closest match to your profile, you are
organs is a kidney, I am not allowed
then called. If you do not respond within
If on a social network, create a “Transplant
to take any form of Ibuprofen nor am I
a certain amount of time, the next person
Notification Page.” My wife and I made a
allowed to eat grapefruit or pomegran-
on the list is called. If you find yourself
mistake and tried texting when my time
ate as they would cause an adverse effect
in any of the above categories other than
came. She received over eighty texts in
with one of my medications. Mind you,
the listed status, ask your transplant team
one hour, all asking questions requiring
each transplant is different which rein-
what you need to do and work with your
long answers. We developed a page on
forces my initial statement. Only take the
medical and social team to get you back.
a well-known social network and used
medications prescribed to you by your
Again, you are the quarterback for your
unos.org to help educate those that sub-
team. They can do nothing without your
scribed regarding wait times and how
input and action.
many people were waiting for transplants.
Once listed, make periodic checks on your
Think about how you will pay this gift
what medications to take; it is just as
insurance and financial status to make
forward. You are receiving the gift of
important if not more so that you take
sure there are no obstacles. I suggest a
life. Figure out a way to “Pay Forward”
your medications ON TIME. The vast
periodic check with your transplant team
that gift that you can never “give back.”
majority of organ rejection and subse-
as well (about every three months) to
Here is my point; let us say for a moment
quent organ failure is due primarily to
insure your status has not changed. Never
that I were to give someone a very large
non-compliance after care. In short,
go for a long period of time assuming
sum of money and they used it to better
people didn’t take their medications the
that all is ok. Regarding contacting your
their life and only their life. Now let us
way they were instructed and lost the
transplant team, understand that you are
imagine that they then paid me back all
not the only one although you may feel
the money I gave them. No one else ben-
like it. The doctors, nurses and coordina-
efitted from my generosity nor from the
Get in the habit of carrying hand sanitizer
tors see thousands of people a year. When
repayment. So you see, even if you could,
wherever you go. As mentioned earlier, it
contacting your coordinator, use e-mail.
“give back” you would close the circuit
becomes very important to stay healthy.
They live, eat and sleep by it. You then
and no one else would benefit from you
One of your greatest protectors is hand
have a time/date stamped message to
actions. Honor your donor or donor fam-
sanitizer containing a minimum of 65%
your communications too. Should you ever
ily with your words and actions. Figure
alcohol. Shaking hands, using a gas pump
have to leave a voice mail, speak slowly,
out a way to make the most out of the
or ATM, handling a menu at a restaurant
speak clearly and leave detailed contact
gift by being a positive impact in the lives
are all ways to easily become infected.
information. I have spoken to several
Using a hand sanitizer greatly reduces
Take your anti-rejection medications ON TIME, EVERY TIME. Now that you know
coordinators who have said the get mes-
get an update on my labs and status. Call
AFTER: YOUR NEW LIFE BEGINS!
Keep a detailed list of all medications you
me!” Brian who? What labs? What status?
After transplantation, you will make a
are taking; whether prescription, over-
What number to call? As you can see this
number of visits to the transplant center
the-counter or holistic. Each drug should
would make for a very frustrating day.
each week. This is to balance out your
have when you take it, how often and the
sages like “Hey it’s Brian, I just wanted to
medication. I cannot express how impor-
dosage for each. There are a myriad of
tant it is to keep these appointments. In
phone applications and websites that will
If a living donor is an option, exercise
the first couple of months, the monitor-
help you keep track of your medications,
it. Living donor transplants typically
ing and balancing of your medications as
print out a medication card and some will
have a longer graft life than cadaveric
well as your body’s reaction to your new
even give reminders.
(organs from a cadaver). If you do not ask,
organ(s) is critical.
Write and thank your donor family or
the answer will always be “No.” Talk to 16
living donor. If you receive a cadaveric
transplant, you will write the letter and submit it to your
planning the things you will do. Set goals and map out how
chaplain. The chaplain will go over the letter to insure there
you will achieve them.
are no identifying information. The chaplain will then submit it to the Organ Procurement Organization (O.P.O.) and they
Most importantly, whether your donor is living or not, you are
will send it on to the donor family. When writing, the best
their legacy. How will you live that out? Someone will give
suggestion I can give you is the same that was given to me.
you the gift of life. How will you Pay It Forward? Do not wait,
Write from your heart. Write what you feel; whatever it is, they
do not procrastinate. That call is coming sooner than you think.
will appreciate it.
REMEMBER My father tells me that change is the only constant. If you have read this far than either you or someone you love is heading towards a life-changing event. Since change is a constant, you have a choice. You can either be the victim of change or the master of it. I hope you choose the latter.
Brian Rudd is a motivational/public speaker and is a Patient/Family Advisor for the Emory Transplant Center. He also volunteers for the Georgia Transplant Foundation and is one of their certified Mentors.
Everyone has a bucket list. Please take yours seriously. You will be given a new life and it’s time to start living and checking things listed off said list. Look beyond the transplant and start
FIRST IN GIVING THEM SECOND
©2012 Children’s Healthcare of Atlanta, Inc. All rights reserved.
Children’s is a national leader in pediatric transplants—giving thousands of children and teens the chance to live longer, healthier lives. choa.org/transplant
Your complete resource for transplant pharmacy services
As the preferred specialty pharmacy provider for the Georgia Transplant Foundation, Community, A Walgreens Pharmacy works closely with the transplant care team to develop a plan that meets every patient’s individualized needs, including: •
Providing direct billing by pharmacy to your Georgia Transplant Foundation account
Having dedicated specialty pharmacists for personalized care
Offering one-on-one adherence counseling
Expert care, convenient location: Community, A Walgreens Pharmacy 1874 Piedmont Ave. NE, Suite 100A Atlanta, GA 30324 404-733-6800
Imprint Magazine www.GaTransplant.org ©2013 Walgreen Co. All rights reserved. 13SP0002-0113
PHYLLIS SILVERSTEIN GETTING TO KNOW PHYLLIS
We interviewed Phyllis Silverstein from the Carlos and Maguerite Mason Trust to know a little bit more about her involvement with the Trust and support of GTF.
Please tell us a bit about your background. I have had the honor of working with charities and philanthropists for more than 30 years. I spent eight years at the Jewish Federation of Greater Atlanta as the Vice President for Planned Giving and Endowment. Prior to moving to Atlanta, I worked in South Florida for 20 years (Miami and Ft. Lauderdale) and held a variety of fundraising positions including Women’s Division Director, Foundation Director, Campaign Director and Co-CEO.
One of the aspects of my role with Wells Fargo is to be the relationship manager for a number of the Bank Managed Funds and Foundations…. the Carlos and Marguerite Mason Trust is one of these.
Any other information you would like for our magazine readers to know about yourself and/ or the Mason Trust? I wouldn’t trade this experience for anything! I feel blessed every day to be part of the Wells Fargo family.
What is the favorite part of your job? Meeting with folks who just want to make a difference and watching the impact they make with their philanthropy…and of course, working with Georgia Transplant Foundation.
What do you see as the future of the Mason Trust? I believe we may see other parts of Georgia expand for the transplant community.
What is your title at Wells Fargo and how did you come to be a part of the Charitable Trust Administration Committee for the Mason Trust? Vice President, Philanthropic Specialist. I am part of the Philanthropic Services Specialist Wealth group. Imprint Magazine
Transplant Celebrating 30 Years with a New Heart
n May, Harry Wuest celebrated
When asked how he feels about his
the 30th anniversary of his heart
transplant and all that goes with it,
transplant. Harry received a new
Harry says, “I’m just glad to be here.
“I attribute my doing so well to getting
heart on May 24, 1985 and was
That pretty much sums up my attitude
a good match from my donor, the love
the third patient to receive a heart
on a daily basis and has helped me
and support of my wife Martha and the
transplant at Emory University Hospital.
navigate the few tough times I’ve had
great care from the doctors and nurses
At the time, his heart was weakened
in the past 30 years.”
over the years,” says Harry. “I also have
from cardiomyopathy, which he suffered
made sure I take my drugs as directed
with for 12 years. He was unable to
Some of Harry’s milestones over the
and on time. Going back to work full
work and in such bad shape, he spent a
last 30 years include:
time gives me a reason to get up and
month hospitalized in the cardiac care
unit prior to his transplant.
Going back to work full-time four
moving each day, especially on those
months after receiving his heart
days when I’m feeling a bit tired.”
transplant and after being sick for With his new heart, this lively 70-yearold is in good health. Harry spends time
12 years and not being able to
Harry is a long-time volunteer with
work full time.
the Georgia Transplant Foundation and
with his 11 grandchildren, works full-
Married Martha Adkinson in 1993.
plans on being trained as a mentor in
time as a CPA at Bach, James, Mansour
First grandchild, Amelia Gibson
the future to be a part of GTF’s Mentor
born in 1995.
& Company in Duluth, and plays a mean game of golf. Two of Harry’s
Passing the CPA exam in 1995.
regular golf partners are also heart
Competing in the transplant
Pictured above: (Left) Harry and most of
transplant recipients: Jim Killman (15
games in 1992, 1994, 2000, and
the nurses who took care of him 30 years
years) and Doug Austin (3 years).
2002, winning seven medals
ago. (Right) Harry and Sam Howard, 29
(three gold, two silver, and two
year transplant recipient.
TOM GLAVINE’S SPRING TRAINING We would like to extend our warmest gratitude to all of our sponsors, in-kind donors, and volunteers for their wonderful support, contributions and generosity
A U D I AT L A N TA
DR. AND MRS. MICHAEL GALLICHIO
Dr. Andy Smith
Community, A Walgreens Pharmacy Forensic Pathology Services Dr. David Lowance The Lumpkin Family
Dr. Carlos and Mrs. Rita Zayas Smith & Howard LifeLink of Georgia Holder Construction Company
Dr. Lance and Dr. Tanya Stein Dr. Miguel Tan Lefkoff, Rubin, Gleason & Russo, P.C. Sonny and Emma Deavours Carolyn and James Riticher Friends of GTF Dr. and Mrs. Roshan Shrestha In Memory of Pat Dunkerley
Dr. Kirk Kanter The Military & Hospitaller Order of St. Lazarus of Jerusalem Bill and Kay Backus RM Compass Group at Morgan Stanley Wealth Management Mr. Ed and Mrs. Connie Daly MJDC
FunTastic Promotions Rick Nebel/RSN Designs, LLC
Dr. Joshua Wolf and Dr. Eric Gibney Dr. Michael D. Horowitz The Chatlos Foundation, Inc.
Dr. David Markham Atlanta Center for Reproductive Medicine Bernstein Global Wealth Management Ramie Tritt Family Foundation Frank Family Foundation Genuine Parts Company Paul and Denise Tso
Disk Jockey’s Unlimited
Chuck Milne Productions Genneva’s Custom Catering Gray Saunders Kitsy Rose PR
For a full list of upcoming educational conferences, special events, and Community Partner Group events, please visit www.gatransplant.org and click on “Happenings.”
SHANE’S RIB SHACK MONTH July 1-31
Countdown to kickoff
celebrity dawgleg golf classic Friday, July 10
Prepare to tee off with some of the University of Georgia’s greatest coaches and players during the Celebrity Dawgleg Golf Tournament held at UGA’s championship golf course.
We are excited to announce that 37 local-area Shane’s Rib Shack restaurant locations are participating in Shane’s Month throughout all of July to benefit the Georgia Transplant Foundation. Ten cents from each drink purchased in September at one of the participating locations will be donated to GTF. The full list of participating Shane’s Rib Shack locations can be found on our website or on the back cover of this magazine. For more info visit: www.gatransplant.org
Countdown to kickoff
saturday, july 11 Join former UGA Bulldogs Matt Stinchcomb, Jon Stinchcomb, and David Greene as they host the 10th annual Bulldawg Illustrated’s Countdown to Kickoff Fan Festival at Sanford Stadium in Athens, GA.
Countdown to kickoff
dawgs for kids
friday, august 14
This is your opportunity to be involved with an event that draws more than 1,000 UGA football fans together with current and former players for a day of personalized autographs, photo opportunities, and family fun!
Bring in the new football season during the Dawgs for Kids party on the playing field at the NEW College Football Hall of Fame. You will have the opportunity to enjoy good food and drinks, bid on live and silent auction items, and mingle with the UGA athletes throughout the night.
For more info visit: www.ugakickoff.com
For more info visit: www.ugakickoff.com
Trends in transplant (TNT) conferences SAvannah: august 15 augusta: september 12 atlanta: october 24 As a statewide organization, it is GTF’s goal to offer services to every transplant candidate, recipient, living donor or family member in Georgia. With that in mind, GTF developed the TNT conferences to bring transplantrelated resources and education to all areas of Georgia. Each year, the program offers new topics specifically of interest to pre- and post-transplant patients. Join us at this year’s TNT Conferences, which will offer you a unique chance to develop friendships, an understanding of important health topics related to your transplant, and get a glimpse into the future of transplantation. The Conference is free for transplant candidates, recipients, living donors and one guest. For more info visit: www.gatransplant.org or call 1-866-428-9411, or e-mail TNT@gatransplant.org
JUMPSTART “Roadmap to success” WORKSHOP
THURSDAY, SEPTEMBER 10 Please come and join the JumpStart Program’s “Roadmap to Success” Workshop that is uniquely designed for transplant recipients and candidates. This workshop is very informative and interactive, and you go away with preparations plus connections to have a successful job search. For more information or to register, please contact us at 770-457-3796 or 678-514-1174. For more info visit: www.gatransplant.org
HALO VIP tickets are $113. For more information, please contact Christina Gilday at 770-426-0313. For more info visit: www.three-13.com
THURSDAY, OCTOBER 8 Celebrate the anniversary of Chef Henry Chandler’s liver transplant during the sixth annual Liverversary Celebration at Henry’s Louisiana Grill in Acworth. The event will feature heavy hors d’oeuvres, musical entertainment, raffles, a cash bar, and a live auction. For more info visit: www.gatransplant.org or www.chefhenry.com
fundraising workshops angels of life sunday, october 4
Join us in the celebration of life during the fourth annual Angels of Life hair and fashion show, presented by Three-13 Salon, Spa & Boutique. This Community Partner Group event will feature guest speakers, hors d’oeuvres, cocktails, dancing, music and the “Angels of Life” inspiring Hair and Fashion show designed by Three-13’s Artistic Team! The event will take place at the Cobb Energy Centre. General admission tickets are $59; VIP tickets are $89;
wednesday, july 8 TUESDAY, august 11 WEDNESDAY, september 9 tuesday, october 6 wednesday, november 18 tuesday, december 1 A monthly seminar hosted at the Georgia Transplant Foundation’s office in Atlanta to help transplant candidates and recipients create and organize a successful fundraising campaign. To register today, please call 678-514-1170 or send an e-mail to: TFP@gatransplant.org.
TOM GLAVINE’S SPRING TRAINING SATURDAY, january 30 Former Atlanta Braves pitcher Tom Glavine will host the 24th annual Tom Glavine’s Spring Training on Saturday, January 30, 2016 to benefit the Georgia Transplant Foundation (GTF). Held at Delta’s Flight Museum, the special night will feature musical entertainment by FLYER, a variety of games with former and current professional athletes and live and silent auctions. Sponsorship packages are available for donations of $1,500 to $25,000. Top-level sponsors will also have the opportunity to enjoy a pre-event sponsor reception at the newly renovated Flight Museum for a more intimate chance to mingle with the athletes and fellow-sponsors. For more information, please visit www. gatransplant.org or contact Cheryl Belair at email@example.com or 678-514-1181. For more info visit: www.gatransplant.org
For more info, visit: www.gatransplant.org
Non Profit US Postage Paid Permit 5965 Atlanta GA
500 Sugar Mill Road, Ste 170-A, Atlanta, GA 30350 770-457-3796 www.gatransplant.org
SHANE’S RIB SHACK MONTH July 1-31, 2015
We are excited to announce that 37 local-area Shane’s Rib Shack restaurant locations are participating in Shane’s Month throughout all of July to benefit the Georgia Transplant Foundation. Ten cents from each drink purchased in September at one of the participating locations will be donated to GTF. Participating Shane’s Rib Shack locations include: Aiken, SC Barnesville, GA Brunswick, GA Carrollton, GA Columbus, GA Covington, GA Cumberland – Atlanta, GA Douglasville, GA Edgewood – Atlanta, GA Ellijay, GA Evans, GA Fayetteville, GA Flowery Branch, GA Fredericksburg, VA Griffin, GA Hinesville, GA Huntsville, AL Hwy 20 – McDonough, GA Hwy 81 – McDonough, GA
Johns Creek – Suwanee, GA Jonesboro Road – McDonough, GA Locust Grove, GA Loganville, GA Monroe, GA N. Warner Robins, GA Newnan, GA Norcross, GA Peachtree City, GA Perimeter – Atlanta, GA Richmond, VA Smyrna, GA Snellville, GA Sugarloaf Pkwy – Lawrenceville, GA The Original – McDonough, GA Valdosta, GA Valleydale, AL Warner Robins, GA