unc center for transplant care patient handbook · unc center for transplant care patient handbook...

K i d n e y & P a n c r e a s T r a n s p l a n t H a n d b o o k

UNC Center for Transplant Care Patient Handbook This book is about getting a Kidney, Kidney/Pancreas or Pancreas transplant, and

living donation for kidney transplant at the University of North Carolina Center for

Transplant Care. Keep this book handy and look back to it if you have questions. At

the back of the book, there is a page for you to write down your thoughts and

questions. Bring this book with you to appointments so you can remember to ask

your doctor or nurse. We hope your experience will be very special and satisfying. For

any questions, call the transplant office toll-free 844-UNC-KIDN (844-862-5436).


THE KIDNEY AND

THE PANCREAS

K i d n e y & P a n c r e a s T r a n s p l a n t H a n d b o o k P a g e | 1

THE KIDNEYS AND THE PANCREAS

What do kidneys do?

Kidneys look like kidney beans. They are about as big as your fist. Most people have

two, located in the lower back, on either side of the spine. The kidneys make urine

to get rid of body wastes and extra fluids from the blood. They also:

Help control blood pressure

Help with making red blood cells

Help control chemicals needed by your body, like potassium

Kidney


Treatments for Kidney Failure

When the kidneys stop working, this is called kidney failure. When you have

permanent kidney failure (also called End Stage Renal Disease or ESRD), you have

options for treatment:

1. You can have DIALYSIS and/or

2. You may want to have a kidney TRANSPLANT

3. You may decide to not have ANY treatment

Dialysis

Dialysis can replace some of the things the kidneys normally do. For some people,

dialysis is a good treatment, and some people who are doing well with dialysis may

not want a transplant.

But there can be problems with dialysis. You must have good vein access for

hemodialysis. Dialysis can take up a lot of time. Some people just do not feel well

on dialysis, they feel tired and they may feel sick. These people may choose

transplant as a treatment for their kidney disease. Most patients need dialysis before

they can get a kidney transplant.


What Does The Pancreas Do And What Treatments Are Available?

The pancreas is an organ that sits in back of the stomach. It makes insulin to control

blood sugar levels, and digestive juices to help the body break down food. Type I

Diabetes is caused by the body’s immune system attacking and destroying the insulin

making cells in the pancreas. If you have Type I Diabetes, then you must take insulin

for the rest of your life to control your blood sugar. The other treatment option is

Pancreas transplant or you may choose no treatment at all.

What About Transplant As A Treatment Option?

The goal of transplant is to replace the function of an organ that is no longer working

well with an organ that does work. The transplanted organ will take over the work

of your sick kidneys or pancreas, and allow you to recover your health and well-being,

live a longer life and have a better lifestyle after transplant. Transplant is not a cure,

but it is a successful treatment for end-stage kidney disease and the effects of Type I

diabetes. However, there are not enough organs for everyone who might want a

kidney or pancreas transplant.

SAMPLE CONSENT DOCUMENTS

Before you start the evaluation and before you are placed on the waitlist, you will

need to review and sign consent forms and a patient education checklist that can

be found at the back of this book. (See Tab Consents and Checklists) Please review

these forms before your evaluation and again before your medical visits. You will

need to sign forms like these before surgery.


RECIPIENTS


WHERE DO TRANSPLANTED KIDNEYS COME FROM?

Kidneys can come from two sources:

Living Donors

a. A relative (called a “living related donor” (LRD)

b. A spouse or friend (called a “living unrelated donor” (LURD)

c. A Kidney Paired Donor (KPD) match*

* For information on UNC’s KPD program, see the section “KPD”

Deceased Donors

a. A person who has died and donated their organs

Living-Related Donor (LRD) or Living Un-Related Donor (LURD):

This is usually the best way to get a kidney transplant because living donor kidneys

usually last longer

The surgery can be planned, so you know the exact date of your transplant

You may not have to wait as long to get a transplant

Deceased Donor (DD):

A deceased donor kidney or pancreas comes from someone who made a decision

to donate their organs when they die. Their family can also make this decision.

A deceased donor transplant cannot be planned. You may be called to the

hospital anytime of the day or night for the surgery.

You may have to wait quite a long time to get a deceased donor transplant. There

are more people waiting than there are donated organs.


RISKS AND BENEFITS of TRANSPLANT

Having a transplant can help you in many ways to feel better and live longer.

Before you get on the transplant Waiting List, you will need a full medical work-up.

We will talk to you about possible risks. The transplant evaluation has some risks

and surgery does too.

Risks of Kidney and Pancreas Transplant

Being put to sleep for surgery (anesthesia)

There may be problems during surgery, like bleeding

You may have infection after transplant

You must take anti-rejection medicines after transplant

You may have some anxiety, sadness, or depression

Your may have some rejection of the new kidney

Death is a very rare risk

Risks of pancreas transplant are generally the same as a kidney transplant,

including failure of the pancreas due to rejection along with other problems

specific to the pancreas surgery such as a blood clot in pancreas vessels, infection,

and fluid leak at the attachment of the pancreas to the small intestine where the

newly transplanted pancreas will drain fluids.


BENEFITS

Living a longer life with better quality

You will feel better and have more energy

More free time because you will not be on dialysis

You can return to work if you are not able to work now

No limits on what you drink or what you eat

After pancreas transplant you can also be free from frequent blood sugar

monitoring, insulin therapy, hypoglycemia, and dialysis

Having normal blood sugar levels may help preserve your eyesight and decrease

or delay other complications of diabetes, such as vessel disease, and diabetic

nerve pain.

THE EVALUATION PROCESS

Whether you get a living donor kidney or a deceased donor kidney, the evaluation

steps are the same. This is because we want to make sure that transplant is the right

treatment for you. We want to make sure you will be able to care for yourself and

your new kidney after transplant. The evaluation will be matched to YOU and YOUR

needs. It may be different from others you know who have had testing, because each

person is different. No tests will be scheduled for you that are not needed. Each test

will help us to know more about you and your health.

The evaluation for a pancreas transplant is the same as the kidney transplant

evaluation, plus a few extra blood tests.


TESTS AND THINGS YOU NEED TO COMPLETE FOR THE EVALUATION

The transplant evaluation is very thorough and it will give the transplant team a lot of

information about your medical needs, how well you will do before and after you have

kidney transplant surgery.

Orientation Class – This class will teach you about transplants and give you

information about the evaluation process.

Chest X-ray and EKG – to check your heart and lungs

Blood Work - There are many blood tests that are done including blood type and

tests to check for infections such as HIV or Hepatitis. One special transplant blood

test is called Tissue Typing. This test will help us match a kidney to you, whether

from a living donor or a deceased donor. Blood work may need to be done more

than once during your evaluation.

Cross Match - This blood test will be done every time you have a potential donor

(living or deceased). This test tells us if you can accept a kidney from a specific

donor.

Renal Ultrasound - This is a way of looking at the shape and size of your kidneys

using sound waves.


ABSOLUTE CONTRAINDICATIONS FOR KIDNEY TRANSPLANT:

(This means we cannot put anyone on the transplant list that has the following):

Active Tuberculosis (TB)

Active substance abuse

Serious cardiac, pulmonary, or other comorbid conditions that create an

unacceptable risk for transplant surgery or transplant immunosuppression

Lack of desire for transplant

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RELATIVE CONTRAINDICATIONS FOR RENAL TRANSPLANT

(This means some of these things may prevent you from being put on the transplant

list until they are taken care of)

Non-stable HIV+

Smoking cigarettes, e-cigarettes, vaping and using smokeless tobacco

Goodpasture’s Syndrome

Active systemic infection

Severe advanced vascular disease

Severe Obesity- Patients with Body Mass Index (BMI) of > 40%

Inability to adhere to a medical regimen

Pediatric patients with weight less than 10 kg

Malignancy with prognosis suggesting an anticipated survival of less than 5 years

History or presence of malignancy requires a disease-specific treatment plan

and may require an extended wait period prior to active listing

Age greater than 80 years old

Inability to meet the financial obligations projected for transplantation,

immunosuppression, and supportive therapies

o If you are unable to stay on your medical regimen, and/or take care of yourself

without a caregiver due to physical and/or mental disabilities and you have no

reliable caregiver

If you decide you do not want a transplant


HOW WE WILL HELP YOU WHEN YOU COME TO UNC

Transplant Nurse Coordinator - The nurse that will help you through the transplant

evaluation process.

Transplant Social Worker – The Transplant Social Worker will meet with you to

find out about your family support and finances and will answer questions you

may have about the transplant process.

Transplant Nephrologist (ne·phrol'o·gist) - The kidney doctor will review your

medical history and he/she will talk with you about transplant benefits and risks,

will examine you briefly, review the results of the studies, answer any questions

you may have, and will decide if other tests are needed before a transplant can

be done.

Transplant Financial Coordinator - You will meet with the Transplant Financial

Coordinator who will review Medicare and/or Medicaid rules with you and any

commercial insurance you may have. He or She will also talk with you about any

additional insurance you may have. It is important that you will have enough

insurance coverage for hospital and medicine costs before and after the

transplant.

Transplant Surgeon – The surgeon will also review your medical history, talk with

you about transplant benefits and risks, will examine you briefly, review the

results of the studies, answer any questions you may have, and will decide if other

tests must be done for the evaluation.


Dentist - We may recommend that you see a dentist before being put on the

transplant Waiting List. The medicines you take after transplant increase your risk

of getting an infection. If you have an active infection, it must be treated. Any

problem teeth may need to be removed. If you do not have a dentist in your area,

please let your Transplant Nurse Coordinator know so that we can get you an

appointment at the UNC Dental Clinic.

Techs for Pap smear/Mammogram/Colonoscopy - For women, an exam and Pap

smear are needed. Women over the age of 40 must have a mammogram.

Everyone over the age of 50 must have a colonoscopy. You can have these tests

done with your local doctor as part of your routine check-up. If you have any

problems getting these done let your Transplant Nurse Coordinator know and you

can have them done at UNC Hospitals.

Specialist Doctors and Nurses may request extra tests for some patients. You may

need other tests or appointments that your Transplant Nurse Coordinator will

help you schedule. All test reports must be reviewed by the transplant team to

make a decision about putting you on the Waiting List.

NOTE: You cannot be approved to be put on the Waiting List until your evaluation is

done and approved by the Transplant Committee.


AFTER THE EVALUATION AND THE WAITLIST

The transplant committee will review your evaluation results to make sure that

you meet our guidelines for a transplant and are healthy enough for transplant in

the future.

If the committee approves you to be put on the Waiting List, then your insurance

company will review your assessment results, and they decide whether to approve

insurance coverage for transplant.

If you are approved by the committee and your insurance company, your name

will then be placed on the kidney transplant Waiting List – we’ll send you a letter

about this!

This Waiting List is a national list, managed by the United Network for Organ

Sharing (UNOS). Each person in the country who is in need of a kidney is listed

with UNOS. Even if you have a live donor, your name is placed on the Waiting

List, just in case your donor is not able to donate a kidney.

The average waiting time for kidney transplant in this part of NC is between three

to six years. Kidneys are allocated based on a scoring system. For more details,

please refer to the “Kidney Allocation” pamphlet in the back pocket.

You may have your name placed on more than one transplant center’s Waiting

List. You can be on Waiting Lists in other regions. Talk with your Transplant Nurse

Coordinator about this if you are interested.


BEING CALLED IN FOR A DECEASED DONOR TRANSPLANT

We may call you at any time of the day or night with a transplant “offer”. We

need to always have current phone numbers for you, your family and friends so

we can reach you when an organ is available. It is also very important that you

set up your voicemail so we can leave a message.

Be prepared to come to the hospital quickly and safely when we call you. We’ll tell

you where to check in. You should keep a hospital bag packed – Bring pajamas,

hairbrush, comb, toothbrush, etc. Do not bring jewelry, cash, and wallet.

You will need someone to care for children and pets (if you have them). You can

expect to stay in the hospital three to five days.

You will need a way to get to the hospital. Make a plan for this.

Tell the Transplant Nurse Coordinator if you have been sick in any way or if you

are taking antibiotics for any reason.

The Transplant coordinator will tell you when to stop eating and drinking. You

can take your medicine with small amounts of water.

If you have diabetes, bring glucose tablets or hard candy (not sugar free) with you

to keep your blood sugar from getting too low.

Bring your medicines and dialysis information (if on CAPD, bring supplies for two

(2) exchanges to the hospital).

Bring your insurance card(s).


NOTE: You have the right to REFUSE a kidney that is offered to you. This is your right.

It will not affect your place on the transplant Waiting List.

If you do accept the kidney “offer”, when you get to the hospital you will have tests

done. These tests are needed to decide if you are a good match for the donor kidney

and you are OK to go through the transplant surgery. These tests include:

1) Blood work (including cross match with the donor)

2) EKG and Chest x-ray

3) Assessment by the kidney doctor and the transplant surgeon

Getting a call about a possible transplant (we call it an “organ offer”) does not mean

you will get the transplant. Usually, at least two patients are called for each kidney.

The first patient called is the primary (or first) candidate, and the second person is a

back up candidate. Back up patients are always called so that if the first patient

cannot have the transplant, we can move quickly to the backup patient. Being back

up can mean a transplant for you!

The amount of time each person spends on the Waiting List can be different. It might

be anywhere from five days to over 10 years. This is because we never know when a

kidney or pancreas will be offered and who will be the best match. Waiting only a

few days or waiting over 10 years are extreme cases. We believe the average wait is

closer to four to eight years based on your blood type. We’ll talk more later about

things you can do to always be ready for the call when it comes.


WHEN YOU COME TO THE HOSPITAL

Whether you are receiving a kidney from a living donor or you are called in for a

deceased donor kidney or pancreas, you can expect the following during your surgery

and hospital stay:


THE SURGERY

Once you are in the operating room and “asleep,” several things will occur:

A tube (Foley catheter) will be put into your bladder. This lets us measure how

much urine you are making during and after surgery. It will be taken out a few

days after surgery.

A small tube (naso-gastric or NG tube) may be put through your nose into your

stomach. This tube will help prevent you from feeling sick and throwing up after

the surgery. It is usually taken out before you wake up.

You will have at least one needle placed in your vein (an “IV”), so you can have

fluids during and after the surgery. These fluids are very important to keep your

new kidney working and making a lot of urine.

Kidney transplant surgery usually lasts about four hours. The new kidney will

usually be put in the right or lower part of your abdomen (belly) just above the

groin area (see picture on previous page). Usually, your own kidneys are not taken

out so you may have three kidneys in your body after surgery.

The blood vessels of the donor kidney will be sewn to your own blood vessels and

the ureter of the kidney (the tube that connects your new kidney to your bladder)

will be sewn to your bladder.

A very small tube about the thickness of thin spaghetti (called a stent) will be

placed in the ureter to make sure urine passes without problem. You will not even

feel this tiny tube. It will be taken out four to six weeks after transplant, during a

simple outpatient procedure in Urology.


Pancreas transplant surgery is similar to a kidney transplant – you will have a

Foley catheter, an IV, and an NG tube. The surgery usually takes two to four

hours. The incision for the transplanted pancreas usually runs from your belly

button to right above your pubic bone (midline). The pancreas is usually placed

on the right side of your abdomen. The vessels of the new pancreas are sewn to

larger blood vessels that go to your leg (veins and arteries). The pancreas is also

connected to a portion of your small intestine so it can drain digestive juices. Your

own pancreas is not taken out. See picture below.

If you have a combined Kidney & Pancreas transplant, the surgery may take three

to six hours and both of the organs are put in through a midline incision. The

pancreas usually goes on the right side and the kidney on the left. For all

procedures, the skin incision will be closed using staples. The staples will be

removed during a follow-up clinic visit about four weeks after transplant. A gauze

dressing will be put over the incision to keep it clean and absorb any drainage,

which is normal.


IMMUNOSUPPRESSIVE MEDICINES (ANTI-REJECTION DRUGS)

Your body will react to your new kidney as it would a foreign object. Think about

what happens when you have a splinter, the area gets swollen and puffy and your

body tries to push it out. To prevent this type of reaction (called rejection) you have

to take anti-rejection medicine (also called immunosuppressants –

im·mu·no·sup·pres·sants). All transplant patients have to take anti-rejection

medicines for as long as they have a working transplanted organ. For your health

and the health of your new organ, you must know all about your medicines: What

medicines, why you are taking them, when you take them, and how much you should

take. There are other medicines that you will need to take in addition to the anti-

rejection drugs.


AFTER SURGERY

The surgeon will come and talk with your family after surgery and let them know

how you are doing.

The transplanted kidney usually begins to work right away. But sometimes the

kidney does not work right away and you may need dialysis for several days until

the kidney is working better. A small number of kidneys (less than 1%) may never

work. The amount of urine you are making will be checked every hour.

After the operation, you will go to the recovery room (PACU or Post Anesthesia

Care Unit) for several hours where you will be watched very carefully until you are

fully awake. You will get medicines for pain and IV fluids. Your vital signs (blood

pressure, heart rate, breathing, and temperature) will be checked frequently.

After the recovery room, you may go to the intensive care unit (ICU) for a day or

two, but usually you will go to the Transplant Floor (5 West) for the rest of your

hospital stay.

Blood work may be checked several times a day.

You will also be weighed daily.

The IV will be used to give you fluids until you are able to eat or drink. The IV will

be removed before you go home (discharge). The diet will be set by the doctors.

Due to the surgery and pain medicines, the bowels are sluggish for a short time.

You will be able to drink and eat once your bowels are moving normally. You will

start with liquids and by the time you go home, you should be back to your usual

diet.


The incision will have a dressing over it. We will teach you how to take care of

your incision and change the dressing.

The nurses will ask you to turn in bed, cough, and breathe deeply at least every

one to two hours while awake.

You can help decrease problems such as pneumonia, constipation, or blood clots

in your legs if you cough, take deep breaths, and walk a lot.

You will learn how to take care of your new organ and yourself as a transplant

patient before you leave the hospital. This means you will learn to:

o Check your blood pressure

o Check your temperature

o Weigh yourself daily

o Write down how much you drink and how much you urinate (24-hour fluid

Intake and Output (“I and O”))

You need to have a thermometer, a scale, and a blood pressure cuff at home after

discharge. The inpatient nurse coordinator will help you get these if you do not

already have them. You need to learn the signs (what to look for) and symptoms

(how you feel) of infection. You need to learn and follow your medicine routine.


After transplant you have a big job - taking care of your transplanted organ. It is

really important to follow the instructions and advice of your transplant team, take

all your medicines as you have been taught, get lab work regularly, and come to all

scheduled clinic visits. Please make sure to tell the transplant team about any

problems or concerns you are having, because they may be related to your

transplant.

Before you go home you will need to learn all your medicines and be able to tell the

transplant team how you should take care of yourself and your new organ. Staying

on top of your care after transplant and following medical advice will give you the

best life for your organ.


IT TAKES A VILLAGE! SETTING UP YOUR SOCIAL SUPPORT

You will need support from family and friends in order to have a successful transplant.

You need to have people who will agree to help you and be able to:

Come to hospital during your stay and learn about transplant care

Drive you home from the hospital the day of discharge – you won’t be allowed to

drive for several weeks.

Be able to help you at home for the first few days – for example - pick up

prescriptions, help set up medicines, get groceries, cook a few meals, change

dressings, etc.

Drive you to UNC Hospital, anytime of the day or night, in case of emergency

Drive you to UNC Hospital for regular clinic appointments and to your local doctor

or to get blood work for the first few weeks

STAYING IN TOUCH

Keeping in touch with your transplant team is very important. Be sure to tell your

Transplant Nurse Coordinator or call the transplant office at 984-974-1539 or toll

free 844-UNC-KIDN (844-862-5436) if you have any of these problems:

o Your phone numbers or address change

o You get sick or have any kind of infection (the flu, a cold, etc.)

o You go to the emergency room, get admitted to the hospital or have any kind

of surgery.

o Your insurance changes

o Call us if you have any questions or concerns – we are here for you!


You can also learn more about kidney transplant at UNC by going to our website:

www.unctransplant.org

http://www.unctransplant.org/


CONTACTING UNOS

UNOS provides a toll-free patient services line to help transplant candidates,

transplant recipients, and family members understand how organs are obtained

and how they are transplanted. You may also call this number to discuss a problem

you may have with your transplant center or the transplant system in general. The

toll-free patient services line number is 1-888-894-6361. UNOS also has a website at

www.unos.org.

http://www.unos.org/


UNOS HOTLINE


PEDIATRICS


PEDIATRIC PATIENTS

If you are reading this section it is because you have a child or a young loved one with

kidney disease and/or kidney failure. In addition, your child’s kidney doctor (pediatric

nephrologist) has sent your child to be evaluated for a kidney transplant. As the

transplant and pediatric nephrology team provides care for your child, we want to

give you information that will help you understand the process and what to expect.

Kidneys work the same way in children as they do in adults (page 1). The treatments

for kidney failure in children are the same as adults. Depending on the child’s size

(and other medical issues), the treatments can be much harder to do safely and need

to be done by a special care team. Sometimes parents may know in advance that

their child has a kidney problem, but there are times when it seems to have happened

suddenly. In either case, we are here to support your loved one and your family

through this process.

Causes of Kidney Failure

Common causes of kidney disease and kidney failure in children are usually different

from what is seen in adults. From the list below, you may recognize the cause of your

child’s kidney failure.

Nephrotic Syndrome

Occurs when there is a loss of protein in the urine, swelling, high

lipids, and low protein in the blood.


Different conditions cause nephrotic syndrome such as minimal

change disease, focal segmental glomerulosclerosis, and

membranoproliferative glomerulonephritis

Birth Defects

Such as born with one kidney (renal agenesis), born with two kidneys

but one does not work (renal dysplasia), or born with a kidney not in

the usual place (ectopic kidney)

Infection

Hemolytic uremic syndrome or post-strep glomerulonephritis can be

caused by infections and permanent kidney damage may occur

Abnormal Urinary Tract

Causes blockage of urine flow, and/or may allow urine to back up

into the kidney (reflux) causing damage

Inherited Diseases

Polycystic kidney disease or Alport’s syndrome can be passed from

parent to child genetically

Systemic Diseases

Lupus and Diabetes can affect the whole body, including the kidneys

Evaluation

Kidney disease and kidney failure in children requires special attention towards their

growth and nutrition, education and school needs, psychological and emotional


development, and immunizations. These same needs will continue requiring careful

attention following kidney transplant.

Children can receive a transplant from the same sources as adults (page 4). Attention

is given to the age and size of the donor, especially when the recipient is very small.

Small children will have an incision in the middle of their belly but older children and

teenagers will have an incision similar to adults (page 17 ).

Many of the tests required for children to receive a kidney transplant are the same

tests as an adult (page 8). While some testing is not required for children (i.e. pap

smears, colonoscopy) children may have special needs that need to be addressed


before renal transplant can be done (i.e. good nutrition, g-tube placement, urology

procedures, dental care). Depending on the cause of your child’s kidney failure and

other medical needs, additional testing may be needed and will be recommended by

either the pediatric nephrologist or transplant surgeon.

Your child will be cared for by a large team of dedicated specialists throughout the

evaluation process and hospital stay (page 11). This group includes:

Transplant Surgeon (attending, fellow, resident, medical student)

Pediatric Nephrologist (attending, fellow, resident, medical student)

Pediatric Intensivist (attending, fellow, resident, medical student)

Transplant Nurse Coordinator

Transplant Financial Coordinator

Social Worker

Pharmacist

Nurses (including student nurses)

Pediatric Psychologist

Technicians

Recreational Therapist

Hospital School Teacher

It is possible your child’s team will also include a pediatric urologist,

pulmonologist or cardiologist.


Call for Transplant

After the evaluation, your child will be placed on the national waiting list. When an

organ becomes available, your child will be called in for a deceased donor kidney

transplant, which is very similar to how the adult patients’ experience (page 13-16).

At the time of an “organ offer”, one difference for children includes not only speaking

with the transplant nurse coordinator, but you may also receive a call from one of

the pediatric nephrologists. You will be directed to go to the Children’s Emergency

Room, the Children’s Short Stay Unit, or directly to a room in the Children’s Hospital.

Just as with adult recipients, children may be called for an “organ offer”, be a backup

patient, and/or come to the hospital more than once before actually getting a

transplant. If the transplant team calls you regarding an “organ offer” for your child

it is important to listen carefully and follow all instructions that you are given.

The Surgery

The surgical procedure for adults and children are very similar (page 17-22). Children

will be in the Pediatric Intensive Care Unit for the first 24-48 hours or longer if their

condition requires it. From there, they will move to a regular room in the Children’s

Hospital. Ideally, visitors should be limited to immediate family and only two visitors

at a time during the hospital stay. This helps to reduce exposure to infections. The

length of stay in the hospital is typically longer for children than for adults, which is

about 7 days.


Support Team

The need for support and care following transplant surgery is important in order to

assure a good working kidney for your child’s future health. Staying in touch and

keeping weekly pediatric nephrology appointments, appointments for blood work,

giving all medications as prescribed and on time, are just some of the jobs parents

and family must be ready to seriously undertake to keep a child with a kidney

transplant healthy. Keeping in touch with your child’s care team and local

pediatrician after leaving the hospital is extremely important. Your transplant

contact person after your child’s kidney transplant is the Pediatric Nephrology

Transplant Nurse in the Pediatric Nephrology office. The contact number at the UNC

Kidney Center is 919-445-2661 or 919-966-2561. Urgent concerns before transplant

or after transplant should be directed to the Pediatric Nephrologist on call by

contacting the UNC Hospital operator at 984-974-1000.


UNC Pediatric Nephrology Contact List

ACC Clinic Appointments: 984-974-5706 fax 984-974-5751

Clinic Nurse Manager (Lana Amed): 984-974-5789

Physicians’ Offices, main number: 919-966-2561 fax 919-966-4251

Direct numbers:

Dr. Keisha Gibson 919-445-2638

Dr. Keia Sanderson 919-445-6119

Dr. Katherine Westreich 919-445-2669

Dr. Dorey Glenn 919-445-2619

Dr. Erica Bjornstad 919-445-2677 (pediatric nephrology fellow)

Dr. Kiri Bagley 919-445-2719 (pediatric nephrology fellow)

Transplant Nurse: Lynn W. McCoy, RN, CNN 919-445-2661 fax 919-966-4251


ALTERNATIVE

OPTIONS


What If I Can’t Find A Match If you know someone who would like to donate a kidney but they are not a good

blood or tissue match, they can still help you.

About one third of living donors are not a good match for their intended recipient.

To help our transplant patients and living donors, UNC has started a Kidney Paired

Donation Program. Kidney Paired Donation (KPD) is when two or more

donor/recipient pairs who are not a good match for each other (incompatible)

exchange kidneys to give each recipient the best possible matched kidney. All

recipient and donor pairs can be considered for the KPD Program.

Benefits of Kidney Paired Donation

For Recipients: You could receive a living donor transplant, which usually means: Living donor kidneys work longer than deceased

donor kidneys You may need less immunosuppressant drugs

after transplant You may not have to wait as long for a transplant,

and you may spend less time on dialysis, or you may get a transplant before starting dialysis

For Donors: It can be a rewarding experience as more families

are helped by your donation As a potential donor, you are given an

Independent Donor Advocate, who will advocate for and promote your best interest

HOW DOES KPD WORK?


Common KPD Questions and Answers

Q: What will happen if I agree to participate in the Kidney Paired Donation

program?

A: If a potential living donor agrees to participate in KPD, they will be scheduled for

the two-day evaluation. If the donor is cleared to donate, and the recipient is ready

to be on the waitlist (or is already on the waitlist) the donor and recipient pair will

be registered on the KPD database. The match list is run frequently, so if there is

not an immediate match, another match could come up at any time.

Q: Where will I have to go?

A: The recipient and their donor will still receive all evaluations and treatments at UNC Hospitals.

Q: Is there a fee for participation?

A: No. There is no payment required or payment given to take part in KPD.

Q: How much extra will this cost me?

A: The costs of KPD are the same as for living donation.

Q: Can donors and recipients meet?

A: Yes, donors and recipients can meet after transplant if everyone agrees to a

meeting.

Q: What happens if I decide not to participate in KPD?

A: If the living donor decides not to donate, and the recipient is eligible for

transplant, the recipient will be put on the Deceased Donor Waiting List.

Q: How do I get started?

A: For more information on Kidney Paired Donation contact the UNC Living Donor

Coordinator - Phone: 984-974-7568 or toll-free 844-UNC-KIDN (844-862-5436)


Other options available at UNC:

Unmatched Blood Type transplant. Also known as Blood Type Incompatible

transplant. This is when a person gets a kidney from a donor that has a blood

type not compatible with them. Special blood tests have to be done, in

advance, to see if this is an option for the recipient. If it is, special

medications and/or treatments are given to the recipient before the surgery.

This allows the surgery to be done safely. Not every recipient is a good

candidate for Blood Type Incompatible transplant. Your transplant team will

discuss this option with you if it applies.

PHS Increased Risk. You may be offered a kidney from what is a called a PHS

(Public Health Services) Increased Risk Donor. This is a donor that has

increased risk social behaviors such as IV drug use, time in prison, getting

paid for sex, newly diagnosed with a sexually transmitted disease or other

risk factors. Many tests are done to determine if this type of donor has any

infectious disease prior to donation. You will be notified at the time of the

organ offer, if the donor is a PHS Increased risk donor. You have the right to

refuse this type of donor offer. Your status on the waiting list will not be

impacted if you choose to refuse this type of donor offer.

Hepatitis C positive Kidneys. You could also be offered a kidney from a donor

that is Hepatitis C+. New drugs have been available since 2013 that are very

successful in curing Hepatitis C, therefore we can now consider these kidneys

for donation. Organs from Hepatitis C+ organ donors have been used with

95% or better cure rates of Hepatitis C after the transplant. If you are

interested in offers from Hepatitis C+ donors, you will have to sign a special

consent. You will be tested often after receiving this type of transplant and

would be given medications to treat the Hepatitis C disease if needed.


LIVING DONORS


Dear Potential Renal Donor, Thank you for getting in touch with the UNC Center for Transplant Care about giving someone your kidney. I am your Independent Donor Advocate, which means that I am here to help you through all of the stages--from learning about donation to testing for it, getting better after surgery, and dealing with feelings or issues that may come later. I am here for you, and I do not work with the person who might get your kidney. You can call me if you change your mind. You can call me if you wonder or worry about how things are going. You can also call me if you ever have a problem with how the living kidney donor team is doing things here at UNC. I will do my best to help you. My number is 984-974-7598. Before you decide to get started, there are many things you need to know about being a living kidney donor. The first and most important thing for you to know is that if you ever decide that this is not something you want to do—at any point along the way—you do not have to move forward. Members of the team will help you stop the process. We can stop it in a way that is private so that you don’t have to say to anyone else that you have changed your mind. It must be your decision to give your kidney. We will remind you of this important fact again and again. Donating a kidney is a big decision because it will take a good deal of work on your part and it will put you at some risk. You will get a lot of information from the living kidney donor team about how the whole process works, and about the risks you will face. We will give you printed information and we will also talk to you about every step. Please write down a list of questions as they come to you. We want to answer all of your questions. Please take the time to read the information in this packet about being a living kidney donor. There are many things that you should know before you take another step. We will go over all of these things in person if you decide to come to the hospital for testing. But if you have a question about any of it that you want to ask before deciding to come to the hospital, please call me. Even starting the testing process can put some people at risk, and we want to make sure that you are as safe as possible. If you want to take the next step after you have gone over all of this information, please read the other letter in this packet that tells you how to get started on the process. Sincerely,

Krista Bergren, LCSWA Independent Donor Advocate


KIDNEY DONATION

Before you can donate a kidney, you need to have a full medical work-up. The work-

up has some risks and the surgery to donate does too. We want to make sure you

know about any possible risks before you decide to do this. We will teach you about

all parts of the donation process:

Giving Consent to the evaluation and the surgery

Completing the Medical and Psychosocial Evaluation

Taking care of yourself before and after surgery

Having the required follow-up testing: We will see you back in our clinic within

two weeks of surgery, and then we want to make sure you are doing well six

months after surgery, and one year and two years later

Why we do the Evaluation

Living kidney donors are usually fairly young and healthy. We will not let people

donate a kidney who have current kidney disease or who have a known high risk to

develop chronic kidney disease. Chronic Kidney Disease (CKD) does not usually occur

until people are in their 40’s and 50’s. End Stage Renal Disease (ESRD) that requires

dialysis usually does not occur before age 60. For young healthy donors, we are

generally not able to fully predict if you will end up with kidney disease in your

lifetime, or if you will ever need dialysis.


What You Need To Know About Living Kidney Donation

When you donate a kidney

You are helping to improve the quality of another person’s life

It should not change your lifestyle in a major way. For instance, donating a kidney

does not change how long you may live

o Women can still have children after donation.

o Your chance of getting kidney disease in your remaining kidney will not

change.

o One kidney does not do as much work as two kidneys do together, but people

can live very well with just one kidney.

o About two to four out of every 100 people are born with only one kidney and

they can expect to live a full life without kidney issues.

o The remaining kidney takes over most but not all the function of both kidneys.

o Donating a kidney means that you will have about 25-35% permanent loss of

kidney function after donation.

What You Need To Know Before You Start Your Evaluation

You must first have both a medical and a psychosocial work-up. This means:

You will have to go through several medical tests.

You will have to answer many questions about yourself (Donor Personal Health

Summary).

The evaluation will be done at UNC over two-three days.


It usually takes about one to two months to finish your testing. It could take more

time or less, based on what is going on with you and the person who might get

your kidney.

Your safety is important

The team may decide that you should not donate a kidney. For example, during

your evaluation we may find problems that could cause harm to you or the

possible recipient if you donate.

If that happens -

o We will tell you why you should not or cannot donate a kidney.

o Our decision may be different from another transplant center. It does not

mean that all other transplant centers would make the same decision.

EVALUATION RISKS

There are some risks to having a donor evaluation. Some of them are:

You could have an allergic reaction to dye used in some medical tests.

We could find that you have an infection that you did not know about. We may

have to report the infection to the health department (for example, tuberculosis,

or HIV, or Hepatitis).

We could find that you have a serious health problem that you did not know

about, such as cancer

You might also need more tests or treatment that you might have to pay for

yourself


We might find out things about your family health history that you did not know

about. Some of these findings could be upsetting.

There are also risks to the recipient with every transplant

You can give someone an infection when you donate a kidney. We will test you

and the recipient for infections, such as Hepatitis B and C, and HIV.

If you take part in “increased risk” behavior, you can pass along an infection in

the kidney you donate. The Donor Personal Health Summary (back pocket), as well

as the doctor that sees you, will ask about “increased risk” behaviors.

Some examples of increased risk behaviors are:

o illegal drug use,

o getting paid for sex,

o men having sex with other men in the last 12 months,

o being in jail/prison in the last 12 months,

o newly diagnosed with a sexually transmitted disease

Please answer the questions in the Donor Personal Health Summary honestly. If you

answer, “yes” to the increased risk questions, we will talk with you before you could

donate. If it is OK to go ahead with donation, we may need to tell your recipient that

there may be an increased risk to them for infection. You may not want this person

to know that you have had increased-risk behaviors. We would always get your

permission first. You can decide not to donate and it will remain private.


DONATION RISKS

There are risks that come with donating your kidney too.

Below you will find some of the risks. There are other possible risks not listed here.

Some of these problems may not last long. Some problems could last forever.

Medical or surgical problems that could happen to you:

o You will have a scar from the incision. You will have pain after surgery, but we

will give you pain medicine for pain control. You may feel tired. You may have

other problems that are common with any kind of surgery. You may feel numb

near the wound.

o You could have problems with your stomach and bowels. You may have gas,

or feel queasy. You could have a bowel blockage in the first few days or weeks

after donation.

o You could have an infection; for example, at the wound site, inside your

bladder or inside your lungs, like pneumonia.

o You may have injury to other organs such as collapse of lung, or inflammation

of lung.

o It would be very rare, but your kidneys could fail, and you might need a

transplant. If you should need a transplant at any time in the future after

donating, you would have a priority when you are put on the Transplant

Waiting List.

o You may get a hernia in the area of the wound. You should not do heavy lifting

for 6-12 weeks after surgery.


o You may develop blood clots. To reduce the risk for blood clots during and after

surgery, women who take hormones for birth control or for menopause

symptoms, will need to stop taking/using these six weeks before donating a

kidney.

o You may have bleeding that needs a blood transfusion.

o As with any type of surgery, there is a very low risk of death during surgery

while getting the medicine that puts you to sleep. One study that followed

80,000 donors showed that 0.0003 percent or about 25 people died from

surgery. This rate has not changed over the past 15 years.

o The edges of your wound could pull apart, or you may have fluid buildup in the

wound.

o You could have heart problems, such as abnormal heart rhythms, a heart

attack or a stroke.

o Black and Hispanic people are more likely than white people to develop chronic

kidney disease (CKD), hypertension (high blood pressure) and diabetes after

donating.

o If you plan to get pregnant after donating, you may have a higher risk than

usual for a miscarriage, you may develop diabetes related pregnancy or high

blood pressure (gestational diabetes and, gestational hypertension and

preeclampsia (high blood pressure leading to seizures if not treated)). It is

generally suggested that a woman be finished having children before donating

a kidney but it is not necessary.


Emotional problems that might happen:

o You may have strong feelings after the surgery. You might be worried about

how you look after the surgery (the scar), or you may feel nervous or have a

change in your way of life that could also affect your family or the family of

the recipient. You may feel guilt and worry that you have to have someone

else take care of you after surgery, even for a short time.

o You may feel sad if the person who gets your kidney gets sick again, “rejects”

the kidney or dies.

o Your life may change in ways you do not like (due to money issues, or limits on

what you can do, etc.)

o You may have more severe anxiety or depression called Post-traumatic stress

disorder.

Financial problems that could happen:

o You might have to spend extra money of your own for travel, housing, and

childcare. (There are programs that might be able to help with some of these

costs. Ask your social worker.)

o You will need to have medical follow-up after donation for the rest of your life,

and you will be responsible for paying for this.

o You could lose pay if you have to take time off work.

o If you cannot work for some reason, you could lose your job.

o You could have trouble finding a new job.

o You could have trouble getting, keeping or paying for insurance:


Health insurance

Disability insurance

Life insurance

o You might have health problems after surgery that you will have to pay for

yourself or with your own health insurance.

There are some other things you need to know, too:

o People who need a kidney transplant must have a medical and psychosocial

evaluation too (see the front part of this book)

o The person who gets your kidney may have risks. For example:

The transplanted kidney may not work well.

The recipient may have a greater chance of death due to surgery.

They could have problems such as return of their kidney disease, kidney

rejection, infections, or even death.

o Even if you are going through the evaluation, the recipient may get a kidney

from a deceased donor before you are approved to donate.

o It is against federal law to get money or gifts in return for your kidney.

o If the recipient does not get their transplant at a Medicare approved hospital,

they may not be able to get their transplant medicine paid for under Medicare

Part B. UNC is a Medicare approved hospital.

o We will protect your privacy and the privacy of the person who will get your

kidney. But there are some limits to privacy, such as:


When someone is in danger of hurting himself or others, we have to tell

someone to get help.

If you get certain infections or cancer in the first two years after surgery,

we have to tell the person who got your kidney, that person’s transplant

center, and other health agencies.

Living Donor Tests

These tests are done to make sure that you, as a donor are healthy with normal

kidneys and that giving one kidney away will not harm you. If there are any concerns,

we will not let you give your kidney. The tests are done while you are an outpatient.

LAB TESTS

To check blood type

A “cross match” to make sure your kidney will be a good match for the recipient

A 24 hour urine test (or special scan) to check kidney health

Other blood and urine tests to check for drug use, kidney function, overall health.

RENAL ULTRASOUND

To check kidney health, size, shape, etc.

CHEST X-RAY

To check heart and lung health

EKG

To check heart health

CT (Computerized Tomography) Scan (also called a CAT scan)


An x-ray that gives the surgeon a good picture of the blood vessels leading to the

kidneys

This test helps decide which kidney will be donated

An IV needle will be placed in your arm so that dye (called contrast) can be given

Additional Tests

Donors over the age of 50 will need to have extra tests to check for colon cancer and

to check the heart

• The heart stress test can be done at UNC Hospitals

• The colon screen can be done through your own doctor or at UNC Hospitals.

Female donors will need to have

• A current PAP test

• If over 40 years old, a current screening for breast cancer (mammogram)

Your Living Donor Team - We are Here To Help You When You Visit UNC

SOCIAL WORKER and PSYCHOLOGIST will talk to you about:

Your evaluation

Your medical, psychological, and social history

Why you want to donate, what your questions and concerns are, how much you

know about organ donation, your risks and possible recipient risks, and who will

be able to help you after surgery


You will be given a chance to talk about any pressures you may feel to donate

FINANCIAL COORDINATOR will talk to you about:

Any costs you may have during the testing or donation process and how the

recipient’s insurance coverage will work

NEPHROLOGIST (Kidney doctor) will talk to you about:

Your medical history and do a physical exam

The donation process and any possible medical reasons that would prevent you

from being a kidney donor

Your test results

Added tests that you need as part of the work up

TRANSPLANT SURGEON will talk with you about

Your test results

The surgery, risks of surgery, and what to expect after surgery

DONOR NURSE COORDINATOR - The nurse that will help you through the

transplant evaluation process.


When the tests are finished, we will review all your tests results with you and tell you

if you would be a good kidney donor. If it is decided that you can donate a kidney,

and your recipient is cleared to receive your kidney, then we will plan a surgery date.

When the surgery happens can depend on many things:

The health status of the recipient

Insurance rules

The surgery schedule

Finding a time that works for both you and the recipient.

A Few Days Before Donation Surgery

1. Tests will be done a second time

Blood tests

EKG

Chest X-ray

2. You will have a physical exam

3. You will be given a list of what to do the night before surgery

4. You will sign the consent form for surgery NOTE: Sometimes a recipient and donor go through the pre-transplant work-up and

the surgery is cancelled at the last minute for a medical problem we cannot control.

When this happens, the recipient will stay on our deceased donor transplant Waiting

List. If possible, surgery will be rescheduled as soon as it is medically safe to do so.


Day of Surgery

Check in at the hospital on the day of surgery at 6:00 AM

You will have a needle placed in your vein (an “IV”), so you can have fluids during

and after the surgery.

Once you are in the operating room and “asleep,” several things will occur:

A tube (Foley catheter) will be put into your bladder. This lets us measure how

much urine you are making during and after surgery. It will be taken out one or

two days after surgery. This allows the doctors to watch the urine output of the

kidney still in your body.

Types of Donor Surgery

There are two types of living donor kidney surgery: laparoscopic and open flank

The most common one is a laparoscopic donor surgery

o We have done this at UNC Hospitals since 1997

o UNC Hospitals was the first transplant program in North Carolina to do this

surgery

o The surgeon uses very small tools - A laparoscope is a thin lighted tube that is

placed into your abdomen. It allows the cuts in the skin to be small and less

painful, and you will heal faster

o The small opening in your skin to remove the kidney can be either:

• Vertical, meaning the opening is up and down

• Horizontal, meaning the opening is from side to side


The open flank surgery

o The wound is about six to eight inches long on the right or left side of your

abdomen under the ribs.

o The skin and muscle need to be cut in order to reach the kidney.

o The lowest rib on that side may be also taken out so the surgeons can get to

the kidney.

o Taking out the rib may require a longer healing period but will not cause any

long-term problems for you.

After Surgery Care

When the surgery is over, the surgeon will come and talk with your family after

surgery and let them know how you are doing.

After the operation, you will go to the recovery room (PACU or Post Anesthesia

Care Unit) for several hours where you will be watched very carefully until you are

fully awake. You will get medicines for pain and IV fluids. Your vital signs (blood

pressure, heart rate, breathing, and temperature) will be checked frequently.

After the recovery room, you go to the Transplant Floor for the rest of your

hospital stay.

The amount of urine you are making will be checked frequently after surgery. The

Foley catheter will be taken out after the first day or two.


After surgery, the diet will be set by the doctors. Due to the surgery and pain

medicines, the bowels are slowed for a short time. You will be able to drink and

eat once this returns to normal. Your diet will progress to regular food very slowly.

You will start with liquids and by the time you go home, you should be back to

your usual diet.

The most common problem after kidney donation is moving your bowels. You will

be given medicine to help with going to the bathroom. You will need to take the

medicines at home for a while. Walking around as much as possible and drinking

fluids will help your bowels work as they did before the surgery.

The incision will have a dressing over it. We will teach you how to take care of

your incision and change the dressing.

The nurses will ask you to turn in bed, cough, and breathe deeply at least every

one to two hours while awake.

You can help decrease problems such as pneumonia, constipation, or blood clots

in your legs if you cough, take deep breaths, and walk a lot.


Getting Ready to Leave the Hospital

The hospital stay is usually two to four days after surgery.

You will be taught how to take care of the wound and what pain medicine can be

used before you leave.

A clinic appointment for after surgery follow up will be made before you leave the

hospital. You will need to see the surgeons at two & four weeks after surgery. Be

prepared to make arrangements to remain in the area (within a 2 hour drive to

UNC) after discharge. You will need to be in the area until you are seen for your

post-operative visit.

You cannot drive until you are cleared by the surgeon to do so.

About four weeks after the surgery, your other kidney will have grown a little

larger to work better.

You can return to work by about three to four weeks after surgery, unless you do

heavy lifting as part of your job. Do not lift more than 10-25 lbs. for three months

after surgery. Think that 10 pounds is a small frozen turkey and 25 pounds is a

large frozen turkey.

You will need to take it easy for the first six weeks after surgery. You can exercise

with some care after four to six weeks and little by little increase that to normal

levels. Walking is a good exercise. Remember, do not lift more than 10-25 lbs. for

three months after surgery.

You should have your blood pressure checked at least once a year and maintain a

healthy weight.


We will contact you at six months, one year and two years after donation to get

information about your general health. This information also includes blood

pressure readings, weight, and lab tests. We are required to report about your

health after donation.

Donating a kidney is a big decision, and it can be a very good experience. Feeling

anxious and scared is very normal. It is our hope that this book helps you to

understand the process and the risks. Also, we hope reading this allows you to ask

more questions. The UNC staff will be happy to answer any questions you may have.

Some people find it helps to talk to family members, friends or their doctor before

they decide. If you want to talk to someone who has been a donor in the past please

let us know and we can help set this up.

Do you still have questions? Please call us.


If you think that you want to donate your kidney, here are the next steps:

1. Fill out the Donor Personal Health Summary form (Back pocket) and return it to

us. You can also fax it to us at: 984-974-0888 or send it via email to Transplant

Donor Coordinator [email protected]. You can also access it on

our website http://www.uncmedicalcenter.org/living donors and submit it

electronically.

2. Visit our website at www.uncmedicalcenter.org/livingdonors

3. If you do not hear from us in a week or so, please call the transplant center to be

sure we received the Summary and to talk about the next steps.

For more information you can visit these websites:

http://www.transplantliving.org/living-donation/

http://www.unctransplant.org/kidney-transplant-livingdonors.php

http://www.kidney.org/transplantation/livingdonors/index.cfm

If we do not hear from you within the next 90 days, we will take it that you do not

want to donate a kidney at this time.

mailto:[email protected]

http://www.uncmedicalcenter.org/livingdonors

http://www.transplantliving.org/living-donation/

http://www.unctransplant.org/kidney-transplant-livingdonors.php

http://www.kidney.org/transplantation/livingdonors/index.cfm


Myths about Living Kidney Donation

Myth #1: A kidney donor will have to take medications for the rest of their life Fact #1: A kidney donor will be given prescriptions for pain medication and stool softeners at discharge from the hospital. These are only for the immediate post-operative period, after that time, a donor does not have to take medication as a result of being a donor. Myth #2: A kidney donor will have debilitating pain for an extended period of time. Fact #2: A kidney donor will have some pain after surgery from both the incisions and related to gas and bloating. This pain will diminish in the days following surgery and can be controlled with pain medication if necessary. Myth #3: A kidney donor will be on bed rest following surgery. Fact #3: A kidney donor will be out of bed and walking independently before discharge from the hospital. Myth #4: A kidney donor will be in the hospital for an extended period of time after surgery. Fact #4: A kidney donor will generally be hospitalized for 2-3 nights only. Myth #5: A kidney donor can no longer participate in sports or exercise. Fact #5: A kidney donor should be able to return to regular activities and exercise at approximately 4-6 weeks following surgery.


Myth #6: A kidney donor will have to follow a new diet plan following donation. Fact #6: A kidney donor should eat a healthy, well balanced diet. There are no dietary restrictions following donation. Myth #7: A kidney donor can no longer consume alcohol following donation. Fact #7: While excessive alcohol use is always dangerous, a kidney donor can consume alcohol in moderation. Myth #8: A female kidney donor should not get pregnant after donation. Fact #8: A female kidney donor should wait 3-6 months' time after donation to become pregnant. The body requires time to recover from the surgery and to adjust to living with one kidney prior to pregnancy. Myth #9: A kidney donor's sex life will be negatively affected by donation. Fact #9: A kidney donor may engage in sexual activity when they feel well enough to do so.

SAMPLE CONSENT DOCUMENTS

If you do proceed with the donor process, please read the consents and patient

education checklists in the last section. Please review these forms before your

evaluation and again before your final visit before your surgery. You will need to

sign forms like these before surgery.


COMING TO UNC


Travel to UNC

Please plan to arrive a little early for your appointments. This gives you plenty of

time to park, register, and find your way around the hospital.

Parking

Public parking is available in the Dogwood Parking Deck across from the

hospital and the Ambulatory Care Center (ACC) on Mason Farm Road. The cost is

$1.50/hour with a maximum cost of $10/day. The deck can take cash or credit cards.

Valet parking is available Monday-Friday, 5:30am-7:30pm, in front of the NC

Children’s Hospital. The cost for Valet Parking is $12/day, no matter how long you

stay. You can buy valet coupons from the valet cashier. They come in books of five,

at a cost of $55 per book. We do not provide vouchers for parking.

If you need help getting around…

If walking is hard for you, you can ride from the Visitor Parking Deck to the hospital

in one of the golf carts/shuttles that goes back and forth. Wheelchairs are available

for visitors and patients once you get inside the hospital, and UNC staff can help you

get to where you need to go.

Food and snacks

Patients are welcome to bring their own snacks and drinks from home, especially for

our diabetic patients. However, food and drinks are available

throughout the hospital and at the ACC. UNC Food Service

locations accept cash and credit cards.

Waiting Rooms

Plan for the day. Bring a bag with books, magazines, food/snacks, water, a sweater…

whatever you can carry that will help you be more comfortable as you wait for your

appointments.


Other


LIST OF WORDS WE USE OFTEN

ABO TYPE Test that determines blood type. Blood types include O, A, B, or AB.

ALLOGRAFT or GRAFT

A transplant from one person to another, not a twin.

ANEMIA Decrease in the number of red blood cells.

ANTIBODY Substances that naturally form in the blood to fight infections. They can attack a transplanted organ, and cause rejection.

CANDIDATE A person waiting for a kidney transplant.

CARDIOLOGIST Heart doctor CREATININE It is a substance found in the blood and is filtered out of the

body by the kidneys. Creatinine blood levels go up with kidney failure, but go down with treatment or transplant. Blood creatinine levels tell us how well the kidney is working

CROSSMATCH A Crossmatch is a blood test that tells us if a person can receive a kidney from a particular donor. We mix your blood with blood from the donor and see what happens. What we want to happen is nothing, no reaction….a NEGATIVE cross match. If your blood cells do react to the donor blood cells, this is a positive reaction or a POSITIVE cross match. You may not be able to accept a kidney from that donor. It may not be safe. We always do a cross match with any donors before doing the transplant.

DECEASED DONOR ORGAN

Donated from an unrelated person who has died.

DONOR A person who gives or donates kidney.

DOPPLER STUDIES A test that looks at your arteries in your legs that will provide blood supply to your new kidney. Also, can be study of arteries in your neck.


LIST OF WORDS WE USE OFTEN con’t

IMMUNE SYSTEM The body’s defense against disease and infection. This system tells white blood cells to fight off viruses, bacteria, and transplanted organs.

IMMUNO- SUPPRESSANTS

Medicines that are needed after a transplant to help keep the body from rejecting the donated kidney; also called anti-rejection medicines. These must be taken everyday for as long as the transplanted organ is working.

NEPHROLOGIST Kidney doctor

RECIPIENT The person who receives the kidney transplant. RENAL Another name for KIDNEY

REJECTION The process that occurs when the body tries to fight the transplanted organ

TRANSPLANT NURSE COORDINATOR

Nurse that will help you during transplant, schedule your tests, and doctor’s visits.

UNOS United Network for Organ Sharing, the national Waiting List.

URETER Tube that carries urine from the kidney to the bladder. VCUG Voiding Cystourethrogram (cys·to·ure·thro·gram), a test that

looks at how well you empty your bladder.


Notes and Questions for my Doctors and Nurses

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Notes and Questions for my Doctors and Nurses

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NOTICE OF NONDISCRIMINATION

UNC Medical Center (UNC Hospitals, UNC Faculty Physicians, and UNC Health Care

Shared Services Center Pharmacy) complies with applicable Federal civil rights laws

and does not discriminate on the basis of race, color, national origin, age, disability,

or sex. UNC Medical Center does not exclude people or treat them differently

because of race, color, national origin, age, disability, or sex.

UNC Medical Center:

• Provides free aids and services to people with disabilities to communicate effectively with us, such as:

o Qualified sign language interpreters o Written information in other formats (large print, audio, accessible

electronic formats, other formats) • Provides free language services to people whose primary language is not

English, such as: o Qualified interpreters o Information written in other languages

If you need these services, contact the UNC Medical Center Director of Patient

Relations (contact information below).

If you believe that UNC Medical Center has failed to provide these services or

discriminated in another way on the basis of race, color, national origin, age,

disability, or sex, you can file a grievance with the Director of Patient Relations,

Patient Relations Department, 101 Manning Drive, Chapel Hill, NC 27514; (984)

974-5006 (phone); (984) 974-8895 (fax); [email protected] (e-mail).

You can file a grievance in person or by mail, fax, or e-mail. If you need help filing a

grievance, the Director of Patient Relations is available to help you. You can also

file a civil rights complaint with the U.S. Department of Health and Human

Services, Office for Civil Rights electronically through the Office for Civil Rights


Complaint Portal, available at https://ocrportal.hhs.gov/ocr/portal/lobby.jsf, or by

mail or phone at: U.S. Department of Health and Human Services, 200

Independence Avenue, SW, Room 509F, HHH Building, Washington, D.C. 20201; 1-

800-368-1019; 800-537-7697 (TDD). Complaint forms are available at

http://www.hhs.gov/ocr/office/file/index.html.

http://www.hhs.gov/ocr/office/file/index.html


AVISO DE NO DISCRIMINACIÓN

UNC Medical Center (UNC Hospitals, UNC Faculty Physicians y UNC Health Care

Shared Services Center Pharmacy) cumple con las leyes federales de derechos

civiles aplicables y no discrimina por motivos de raza, color, nacionalidad, edad,

discapacidad o sexo. UNC Medical Center no excluye a las personas ni las trata de

forma diferente debido a su raza, color, nacionalidad, edad, discapacidad o sexo.

UNC Medical Center:

• Proporciona asistencia y servicios gratuitos a personas con discapacidades para que se comuniquen de manera eficaz con nosotros, como los siguientes:

o Intérpretes de lenguaje de señas capacitados o Información escrita en otros formatos (letra de imprenta grande,

audio, formatos electrónicos accesibles, otros formatos) • Proporciona servicios lingüísticos gratuitos a personas cuya lengua materna

no es el inglés, como los siguientes: o Intérpretes capacitados o Información escrita en otros idiomas

Si necesita recibir estos servicios, comuníquese con UNC Medical Center Director

of Patient Relations (Director del Departamento de Atención al Paciente)

(información de contacto a continuación).

Si considera que UNC Medical Center no le proporcionó estos servicios o lo

discriminó de otra manera por motivos de raza, color, nacionalidad, edad,

discapacidad o sexo, puede presentar una reclamación a la siguiente persona:

Director of Patient Relations, Patient Relations Department, 101 Manning Drive,

Chapel Hill, NC 27514; (984) 974-5006 (teléfono); (984) 974-8895 (fax);

[email protected] (correo electrónico).


Puede presentar la reclamación en persona o por correo postal, fax o correo

electrónico. Si necesita ayuda para hacerlo, el Director del Departamento de

Atención al Paciente está a su disposición para brindársela. También puede

presentar una reclamación de derechos civiles ante el U.S. Department of Health

and Human Services, Office for Civil Rights (Oficina de Derechos Civiles del

Departamento de Salud y Servicios Humanos de EE. UU.) de manera electrónica a

través de Office for Civil Rights Complaint Portal, disponible en

https://ocrportal.hhs.gov/ocr/portal/lobby.jsf, o por correo postal o por teléfono

en: U.S. Department of Health and Human Services, 200 Independence Avenue,

SW, Room 509F, HHH Building, Washington, D.C. 20201; 1-800-368-1019; 800-

537-7697 (TDD). Puede obtener los formularios de reclamación en

http://www.hhs.gov/ocr/office/file/index.html.




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Emergency Preparedness – Disaster Supplies Kit

Disaster preparedness is essential for everyone, especially those with a chronic disease. Preparing a Disaster Supplies Kit is one way to stay prepared. A Disaster Supplies Kit is typically made of items that a family would need to stay safe during or after a disaster. Below is a basic list of items that should be included in your kit. Preparing now can help to ensure the health and safety of you and your family or caregiver in the event of disaster.

Basic Disaster Supplies

3 day supply of non-perishable food and a manual can opener

3 day supply of water (1 gallon/person/day)

Battery powered radio with extra batteries

Battery powered phone charger

Flashlight with extra batteries

First aid kit and manual

Clean clothes and sturdy shoes

Extra blanket or sleeping bag

Sanitation and hygiene items (hand sanitizer, moist towlettes, and toilet paper)

Identification and important paperwork (e.g. driver’s license, social security card, insurance information, etc.)

Credit card

Cash

Special needs items (eye glasses, contact lens solution, hearing aid batteries, etc.)

Matches in a waterproof container

Any additional items to meet your unique family needs (ex. Infant items, pet supplies, local maps, etc.)


Medical Supplies

5-7 days of all medications

5-7 days of formula

5-7 days of saline for tube feedings or IV infusions

1 extra enteral pump and battery pack

1 extra IV pump and battery pack

5-7 days of wound care supplies

Blood pressure cuff

Extra enteral formula bags

If you have diabetes

5-7 day supply of syringes

5-7 day supply of insulin

5-7 day supply of glucose monitoring supplies (e.g. lancets and alcohol wipes)

Spare batteries and test strips

If you have heart disease

5-7 day supply of all blood pressure, heart, or anti-clotting medications

Other items to consider

If you have your medications mailed, do you have your pharmacy and insurance company phone numbers should you need to make alternate arrangements?

Do you have an evacuation plan for your home?

If you need assistance evacuating, do you know someone who will be able to help you?

Do you have your healthcare providers' phone number(s)?

Do you know the telephone numbers to the emergency management assistance program for your county?


CONSENTS AND

CHECKLISTS

Patient Education Checklist for Recipients P a g e | 1

Patient Education Checklist for Placement on the Transplant Waiting List HIM #: 1246s

I am being evaluated for a transplant for my (check all that apply):

KIDNEY PANCREAS LIVER LUNG HEART

I understand and agree to the following as explained to me by my medical team (please place your initials in the box by each statement):

Initials This section is to be completed prior to beginning evaluation

I understand what the evaluation process requires and agree to undergo an evaluation to identify if I am a possible candidate for transplantation. As part of the evaluation, I understand that:

I must have a series of tests and consultations to determine if I am a transplant candidate.

The transplant team is responsible for helping me schedule the required tests and consultations.

I am responsible for attending my appointments as scheduled. If I am unable to attend, I am responsible for letting a member of my transplant team know.

Once I have completed all tests and consultations, the transplant team will use the evaluation results to make a decision about if transplant is a good option for me. The decision may be:

o I am a candidate for transplant and will be added to the waitlist. o I am not a candidate for transplant as a treatment. o More testing is needed to determine if I am a candidate or not.

The transplant team will communicate the decision to me in writing.

If I am placed on the waiting list and my health or financial status changes, I may have to be re-evaluated, placed on hold, or be removed from the waiting list.

I understand the alternative treatment options to transplantation may include continued medical management, no further treatment, or the organ specific treatment options outlined in the table below (check all that apply):

Kidney Transplant

Pancreas Transplant

Liver Transplant

Heart Transplant

Lung Transplant

Dialysis, peritoneal dialysis, palliative care, or hospice

Pancreatic islet cell

transplantation, medication

regimen, palliative care, or hospice

Hepatocyte transplantation,

partial liver transplant, medication

regimen, palliative care, or hospice

Ventricular assist device (VAD),

artificial heart, palliative care, or

hospice

Artificial lung, stem cell therapy,

lung volume reduction,

palliative care, or hospice


I understand the potential psychosocial risks related to transplant include, but are not limited to: depression, posttraumatic stress disorder, and generalized anxiety. I may also have anxiety about being dependent on others or having feelings of guilt. I may also be worried about my ability to get medical, disability and/or life insurance in the future.

I understand the potential medical and surgical complications related to transplant include, but are not limited to: bleeding requiring a blood transfusion, infection, wound separation, numbness around the site of the incision, fluid collection at or around the transplanted organ, blood clots, pneumonia, organ rejection or failure that may lead to the need for re-transplant, abnormal heart rhythms, cardiovascular collapse, lifetime use of medications to suppress the immune system, multi-organ failure. Rare risks of any procedure performed under general anesthesia include heart attack, stroke and death.

I understand that the Scientific Registry for Transplant Recipients (SRTR) publishes each transplant program’s current outcomes, survival rates, and mean waiting times online at www.srtr.org. A member of the transplant team has explained how I can use this information and who I can contact with questions. I have been given the SRTR data with a release date of ______________________________. insert month and year

I understand efforts are made before transplant to find risks in the donor. These risks may include, but are not limited to: the donor’s history, condition or age of the organ used, and undetected infectious diseases. The donor will have many tests done to look for these risks. It is rare that any disease will be passed along from the donor organ, but it can happen. Bacterial infections, viral infections, human immunodeficiency virus (HIV), fungal infections and cancer cells are some examples.

I understand the Public Health Services (PHS) consider some behavior to result in increased risk. I may be offered an organ from an increased risk donor. My transplant team will let me know of any risk that may affect the outcome of my transplant at the time of the offer. I have the choice of whether or not to accept this offer.

I understand that I am NOT on the transplant waiting list until I complete the entire transplant evaluation process and I receive notification from my transplant coordinator that I have been placed on the waitlist or a decision has been made to not place me on the waitlist and I have been given the reason for that decision.

http://www.srtr.org/


Patient Name (please print):

Patient Signature: Date: Time:

If Applicable, Name of Authorized Representative of Patient (please print):

If Applicable, Authorized Representative of Patient Signature: Date: Time:

Transplant Nurse Coordinator Name (please print):

Nurse Coordinator Signature: Date: Time:


Initials This section is to be completed during my evaluation

I have received, reviewed and understand my organ specific transplant educational booklet(s).

I have been given the United Network for Organ Sharing (UNOS) booklet “Questions and Answers for Transplant Candidates and Their Families about Multiple Listing and Waiting Time Transfer”. I understand I may choose to be listed at more than one center and they may need more testing to be done. I also understand that each center will decide if I can be added to their waitlist.

I understand transplant surgery is an elective procedure that has risks. I have been told about the risks of transplant surgery specific to my organ and the future risks related to use of transplant medications.

I understand the surgical procedure as explained to me by a transplant surgeon to include: • The surgery procedure to be performed • The surgical risks specific to that procedure • How the surgery is expected to improve my health or quality of life • My expected length of hospitalization following surgery • My expected recovery period • When I may return to my normal daily activities

I understand my transplant team is not able to predict when the next organ may become available for me.

I understand that I have the right to refuse transplant at ANY time. It will not affect my listing status if I do refuse a transplant offer.

I understand that if I am added to the transplant waiting list, I must meet the goals of the transplant team. These goals have been explained to me. If I am not able to fulfill these goals, then I may be removed from the waitlist.

I understand I will need to take medicines to prevent infection, rejection and to treat other health problems like high blood pressure or high blood sugar. I will not change my medicines without talking with my transplant coordinator or doctor.

I understand the need for ongoing care after transplant. This care includes but is not limited to biopsies, medicines, lab work and return visits to the UNC Health Care Center for Transplant Care. It is important that I follow the orders of my transplant team. I will call my transplant team if I am not able to follow through with the treatment plan given to me.

I have received information about and understand my financial responsibilities including but not limited to out of pocket cost, medication costs, insurance requirements and fundraising options.

I understand that if I do not receive a transplant at a Medicare certified facility, I may not be able to obtain Medicare benefits (Part B) for the medicines that prevent rejection.

I understand that all transplant programs are staffed by Physicians, Surgeons, and Transplant Nurse Coordinators, 24 hours a day, 7 days a week, 365 days a year. I understand that UNC Health Care’s Center for Transplant Care is available to accept organ offers on my behalf, perform transplants, and provide post-transplant care. I further understand that UNC Health Care’s Center for Transplant Care has a designated Primary Surgeon and Primary Physician for each organ transplant program, but none of its programs are a single surgeon program so back up is available.


I understand that my daily routine may be disrupted with little or no warning by a catastrophic event, such as an earthquake, tornado, or flood. Help might not always be available, so emergency preparedness is critical. I understand that having an emergency plan in place is especially important since I have a chronic illness, am an organ transplant recipient, or I have special medical needs such as oxygen or equipment that is supported by power. I agree that in creating my personal emergency plan, I will consider the following:

Making an emergency supply kit

Keeping an updated medicine list and one month supply of medications on hand if possible

Creating a personal evacuation plan

Collecting important personal information

Making sure my health care team knows how to reach me

If I have a question regarding my medical care, I understand I should always call UNC Health Care Center for Transplant Care first. However, for general organ transplant-related information, I understand I can call the United Network for Organ Sharing (UNOS) toll-free patient services line at 1-888-894-6361.

My questions about transplant have been answered and I know I can contact my transplant coordinator at any time if I have more questions.

If I am approved for transplant by the UNC Health Care Center for Transplant Care Transplant Team, I request that my name be added to the UNOS Transplant Waiting List.

Patient Name (please print)


If Applicable, Name of Authorized Representative of Patient (please print):



Transplant Nurse Coordinator Signature: Date: Time:

Patient Education Checklist for Living Kidney Donors P a g e | 1

Patient Education Checklist for Living Kidney Donors HIM #: 1317s

I understand and agree to the following as explained to me by my medical team (please place your initials in the box by each statement):

Initials This section is to be completed prior to beginning evaluation

I understand that donation of a kidney is an elective surgical procedure. I may discontinue the evaluation process and decline to donate at any time throughout the entire donation process.

I understand that I can get a note from my living donor team saying I am not able to donate my kidney if I decide I do not want to donate my kidney. I understand this would relieve me of being able to donate my kidney at this time. My medical records would not be falsified in any way.

I understand that my decision not to donate is only disclosed if I authorize such disclosure.

I understand my health information will not be shared with a potential recipient or their family members unless I give signed consent to share such information.

I understand that a deceased donor organ may become available for the recipient before my evaluation or donation occurs.

I understand that in order to be considered as a donor, I must undergo a thorough and ongoing evaluation process. I understand the following about the evaluation process:

I must have a series of tests and consultations to determine if I am a candidate for kidney donation.

I am responsible for attending appointments, providing an accurate medical history to the best of my ability, and staying in communication with my team to let them know of any changes to my health.

My team is responsible for processing my application, scheduling the required evaluation appointments, informing me of my rights and responsibilities as a donor, and providing me with an Independent Living Donor Advocate to ensure donation is in my best interest.

Once the evaluation is completed, my team will use the information obtained from testing and consults to make a decision about whether or not I can donate at UNC Health Care Center for Transplant Care.

I understand that there are surgical, medical, psychosocial, and financial risks associated with living donation, which may be temporary or permanent and include, but are not limited to, the following:

• Potential medical or surgical risks, noting that my morbidity and mortality may be impacted by age, obesity, hypertension, and other pre-existing conditions: o Bleeding requiring a blood transfusion and the risks involved with use of blood or blood

products may include an allergic reaction, infection, fever, or other serious complications

o Scars o Hernia


o Wound infection or separation o Numbness around the site of incision o Fluid collection o Blood clots o Pneumonia o Abnormal heart rhythms o Nerve injury o Pain o Fatigue o Abdominal symptoms such as bloating, nausea, and developing bowel obstruction o Surgical complications, including the risks of any operation performed under general

anesthesia such as heart attack, stroke, and death o Increased risk of complications with the use of over the counter medicines and vitamins o Decreased kidney function o Acute kidney failure and the need for dialysis or kidney transplant for me immediately

after donation o Expected post-surgical course and discomforts (e.g. possible need for artificial

ventilation, pain, bleeding, and infection) o Unexpected termination of the surgery with any indication that I am at risk of significant

complications or death during the surgery o Other medical complications including long-term complications that are currently

unforeseen • Potential psychosocial risks

o Problems with body image o Post-surgery depression, anxiety, or emotional distress o Possibility of post-surgery adjustment problems o Impact on my or the recipient’s family or next of kin o Anxiety or guilt about being dependent on others o Changes to my lifestyle from donation o Feelings of emotional distress or grief if the recipient experiences any recurrence of

disease or if the recipient dies o Transplant recipient rejection and need for re-transplantation

• Potential financial impacts o Personal expenses of travel, housing, child care costs, and lost wages related to

donation may not be reimbursed; however, resources may be available to minimize some donation-related costs

o Need for life-long follow up at my expense o Loss of employment or income o Negative impact on my ability to obtain future employment o Negative impact on my ability to obtain, maintain, or afford health insurance, disability

insurance, long-term care and life insurance o Future health problems that I experience following donation may not be covered by the

recipient’s insurance and/or may affect my maximum lifetime insurance benefits


o Post donation expenses related to follow-up testing at 6 months, 1 year, and 2 years following donation

I acknowledge that long-term medical implications of organ donation have not been fully identified.

I understand that the Scientific Registry for Transplant Recipients (SRTR) publishes each transplant program’s current outcomes, survival rates, and mean waiting times online at www.srtr.org. There are currently no national or center-specific outcomes for living donors calculated by the SRTR. A member of the donation team has explained how I can use the available information to review the data relating to the program’s performance. I know that I can contact my Living Donor Coordinator with questions. I have been given the SRTR data with a release date of ______________________________. Insert month and year

I understand that UNC Health Care Center for Transplant Care may refuse me as a living donor. I may elect to be evaluated at another transplant center that may have different selection criteria.

I understand the risks associated with evaluation for living donation, including but not limited to:

Allergic reactions to contrast

Discovery of reportable infections

Discovery of serious medical infections

Discovery of adverse genetic findings unknown to the living donor

Discovery of certain abnormalities that will require more testing at the living donor’s expense or create the need for unexpected decisions on the part of the care team

I understand that health information obtained during my living donor evaluation is subject to the same rules as all medical records and could reveal conditions that must be reported to local, state, or federal public health authorities.

I understand that certain illnesses may affect my chances of further illness or death. I understand that the health care team will not allow me to donate my kidney if I have an illness that might harm the person who gets my kidney.

I understand that all of my Private Health Information (PHI) will remain private unless I give signed consent for disclosure. This protection includes any interactions I have with the living donor team at the UNC Health Care Center for Transplant Care.

I understand that UNC Health Care Center for Transplant Care must provide me with an Independent Living Donor Advocate (ILDA). This person will assist me by:

Protecting and representing my interests

Explain to me that the choice to donate is completely voluntary

Inform and discuss the medical, psychosocial, and financial aspects related to live donation

Be available to assist me during the evaluation, consent, and donation phases

Explain the evaluation process, including what it means to stop at any time


I understand that UNC Health Care Center for Transplant Care will take all reasonable precautions to provide confidentiality for the living donor and recipient.

If I am a non-directed donor, I understand that UNC Health Care Center for Transplant Care will take all reasonable precautions to provide anonymity for the donor and recipient; and there is a separate consent for the non-directed donor to participate in a kidney paired donation program.

I have a copy of and have reviewed the entire Living Donor Section of the Kidney Handbook and have been provided education on all phases of the living donation process, including consent, diagnostic tests and medical and psychosocial consultations, care during the pre-transplant phase, the surgical procedure, care following donation, and required post-operative follow up.

I have had an opportunity to ask questions about the evaluation process.



If Applicable, Authorized Representative of Patient (please print):





Initials This section is to be completed during my evaluation

I, my designee, family member, or next of kin have been given an opportunity to discuss our concerns in a safe and non-threatening environment.

I have been given plenty of time to reflect after learning about living kidney donation.

I have been told about the results of my evaluation testing. A member of my health care team discussed with me how my current health issues and medicines may affect me during and after surgery.

I understand that it is a federal crime for any person to knowingly acquire, obtain, or otherwise transfer any human organ for anything of value including cash, property, and/or vacations.

I understand that coverage for expenses incurred as a result of organ donation is not considered monetary profit.

I understand that living donor kidney transplant is not the only treatment option for a potential recipient’s End State Renal Disease (ESRD). Other treatment options include supportive care and treatments to manage your symptoms (without dialysis), dialysis, peritoneal dialysis, deceased donor transplant, or no treatment at all.

I understand that if the transplant recipient to whom I am donating does not receive a transplant at a Medicare certified facility, the recipient may not be able to get his/her medicines that prevent rejection of the kidney paid for under Medicare Part B. UNC Health Care Center for Transplant Care is currently a Medicare approved facility.

I understand that any potential recipient may have an increased likelihood of adverse outcomes (including but not limited to graft failure, complications, or mortality that:

Exceed local or national averages

Do not necessarily prohibit transplantation

Are not disclosed to me

I understand that UNC Health Care Center for Transplant Care can only share certain information about the recipient with their permission including:

Any reasons for increased likelihood of adverse outcomes

Personal health information collected during their evaluation, which is confidential and protected under privacy law

I understand the surgical procedure as explained to me by a transplant surgeon to include:

The surgery to be performed

The risks of surgery

How the surgery is expected to impact my health or quality of life

My expected length of hospitalization following surgery

My expected recovery period

When I may return to normal daily activities


I understand my post-donation kidney function, and how chronic kidney disease (CKD) might potentially impact me in the future to include:

An expected 25-35% permanent loss of kidney function although mine could be more or less

My risk of End State Renal Disease (ESRD) does not exceed that of the general population with the same demographic profile, risk of ESRD for me may exceed that of healthy non-donors with similar medical characteristics.

My risks must be interpreted in light of the known epidemiology of CKD and ESRD. When CKD or ESRD occurs, CKD generally develops mid-life (40-50 years old) and ESRD generally develops after age 60. The medical evaluation of a young living donor cannot predict the lifetime risk of CKD or ESRD.

My risk for CKD may be higher if I sustain damage to my remaining kidney. The development of CKD and progression to ESRD may be faster with only one kidney.

Dialysis is required if I develop ESRD.

Current practice is to prioritize living kidney donors who become kidney transplant candidates.

If I am female, I understand my risks of pre-eclampsia or gestational hypertension are increased should I get pregnant after donation.

I understand I may be asked to consent to additional vessels from my body being removed along with the donated kidney for the purpose of ensuring a successful transplantation for the recipient.

I understand that future health problems related to the donation may not be covered by my insurance and that my ability to obtain health, disability, or life insurance may be affected.

I understand that if it is necessary to stop the recipient’s surgery, my kidney would be made available to a recipient on the deceased donor waitlist according to OPTN policies and accordingly would not be received by the recipient of my choice.

I understand that if my organ cannot be given to a candidate at UNC Health Care Center for Transplant Care and has to be transported to another transplant center, there is an increased risk for organ loss or death related to transport of my organ. I understand I must give signed consent for my kidney to be shipped to another transplant center.

I understand UNC Health Care Center for Transplant Care must report living donor follow-up data to the Organ Procurement and Transplantation Network (OPTN) for at least two years.

I commit to follow-up testing organized by UNC Health Care Center for Transplant Care for at least two years. I commit to follow-up testing performed at 6 months, 1 year, and 2 years following kidney donation:

Estimated 6 month follow-up range _________________ to ______________________

Estimated 12 month follow-up range _________________ to _____________________


Estimated 24 month follow-up range _________________ to _____________________

I understand that any infectious disease or cancer related to acute recipient care found during follow-up testing during the first two years after donation will be shared with me, may need to be reported to local, state, or federal public health authorities, will be shared with my recipient’s transplant center, and will be reported through the OPTN Improving Patient Safety Portal.

I have received information about the National Kidney Foundation’s email discussion group for sharing experiences, asking questions, and finding support. The web address for this group is www.kidney.org

My questions about kidney donation have been answered and I know I can call the UNC Health Care Center for Transplant Care at the toll-free number 888-263-5293 at any time if I have more questions.

I have been encouraged to select a Primary Care Physician (PCP). My PCP is __________________________ and can be reached at __________________________________.

If I have elected not to have a PCP, I have been given the contact information for UNC Health Care “Find a Doc” and understand I can call (919) 966-7890 to find a PCP.

By signing below I indicate that family members or others did not induce or coerce me into making my decision; the choice to donate a kidney is entirely mine and entirely voluntary. I fully understand all risks of surgery as explained to me by my medical team and I am willing to undergo surgery for the purpose of removing my kidney for donation.



If Applicable, Authorized Representative of Patient (please print):





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UNC CENTER FOR TRANSPLANT CARE

www.unctransplant.org

Toll Free # 1-844-862-5436

(1-844-UNC-KIDN)

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