GTF Imprint Magazine - Vol 8 (2015) by GATransplant

Issue 08 | Summer/Fall 2015

grhealth.org/transplant

Hope:

Reese,

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.

LETTER FROM

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, protchford@gatransplant.org Finance Director • Lisa Carlotta 678.514.1171, lcarlotta@gatransplant.org Director, Patient Services • Sandy McMath, LCSW 678.514.1172, smcmath@gatransplant.org Director, Marketing and Communications • Rita Michaels, MA 678.514.1180, rmichaels@gatransplant.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.

678.514.1176, rmoshiri@gatransplant.org

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, cbelair@gatransplant.org Manager, Patient Services • Rebekah Moshiri, LMSW

Manager, Transplant Fundraising Program • LaTonia Patterson 678.514.1170, lpatterson@gatransplant.org Director, JumpStart Program • Vivian Tomlinson, MS 678.514.1178, vtomlinson@gatransplant.org Manager, Patient Outreach • Martie Rudd 678.514.1187, mrudd@gatransplant.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) gtf@gatransplant.org www.GaTransplant.org

Executive Director Imprint Magazine

www.GaTransplant.org

ISSUE 08

CONTENTS

GTF PROGRAMS 06 Housing Assistance 06 What It Means to be a Mentor 07

Insurance Premiums

Training Beyond the Curriculum

FEATURES

Living Kidney Donation

Transplant 101

Interview with Phyllis Silverstein

Celebrating 30 years with a new heart transplant

Happenings

Imprint Magazine

www.GaTransplant.org

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

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

HOUSING

ASSISTANCE

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.

Imprint Magazine

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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.

TRANSPLANT FUNDRAISING

INSURANCE PREMIUMS

hen Jamal

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

Benefits, eligibility,

premium costs.

deductibles, out-of-pocket expenses, PPO, HMO…the

• Individuals who are

list goes on and on.

eligible for a kidney, pancreas, liver, lung, heart,

Jamal’s transplant

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 lpatterson@gatransplant.org or by calling

workshops.

(678) 514-1170.

Imprint Magazine

www.GaTransplant.org

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

nections.

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.

Apprenticeship opportunities.

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.

work EXPERIENCE!

nities knocking on your door.

Imprint Magazine

www.GaTransplant.org

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.

Imprint Magazine

www.GaTransplant.org

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

Imprint Magazine

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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

lowing:

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

health.

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

versation.

contact.

Friend/family member: “Hey ‘potential recipient’ how are things

Donating a kidney is the best gift anyone could ever give. If

going.”

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 option.”

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

www.GaTransplant.org

TRANSPLANT

101

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

Imprint Magazine

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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

you?

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.

EVALUATION

an evaluation until you have quit for six

They did not update their contact infor-

This is the first step in the transplantation

months.

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

plantation.

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.

FINANCIAL

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

Imprint Magazine

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Encompass Rx is proud to announce that we are the NEW PHARMACY OPTION for Georgia Transplant Foundation patients with the ability to directly bill your fundraising account.

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404.367.9111 855.443.9944

1190 West Druid Hills Drive Suite 135, Atlanta, Georgia 30329

(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?

cover.

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

manners.

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:

recover.

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

rary medical condition such as a cold, flu Imprint Magazine

www.GaTransplant.org

(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

outcome.

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-

transplant team.

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

transplant.

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

of others.

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-

that risk.

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

WAITING

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

Imprint Magazine

www.GaTransplant.org

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.

Be ready!

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

CHANCES

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

Imprint Magazine

www.GaTransplant.org

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

•

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•

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Expert care, convenient location: Community, A Walgreens Pharmacy 1874 Piedmont Ave. NE, Suite 100A Atlanta, GA 30324 404-733-6800

INTERVIEW WITH

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

www.GaTransplant.org

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

bronze).

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.

Project.

& 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.

Imprint Magazine

www.GaTransplant.org

23RD ANNUAL

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

Scott Moore

Chuck Milne Productions Genneva’s Custom Catering Gray Saunders Kitsy Rose PR

HAPPENINGS

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.

Countdown to kickoff

Fan Festival

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

Imprint Magazine

www.GaTransplant.org

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

LIVERVERSARY CELEBRATION

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 cbelair@gatransplant.org or 678-514-1181. For more info visit: www.gatransplant.org

For more info, visit: www.gatransplant.org

Imprint Magazine

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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