LIVING DONOR KIDNEY LIVING DONOR KIDNEY TRANSPLANTTRANSPLANT

Kelli Willard West, MSSW, APSWLiving Donation Outreach Educator

End Stage Renal Disease End Stage Renal Disease (ESRD) or Kidney Failure(ESRD) or Kidney Failure

Can occur at any age Requires renal replacement therapy

(dialysis) or kidney transplant to sustain life

Time varies between diagnosis and need for dialysis or transplant, depending upon disease

Common Causes of Kidney FailureCommon Causes of Kidney Failure Diabetes Type I & II (diabetic nephropathy) Hypertension Hereditary

Polycystic Kidney Disease (PCKD) Auto-Immune

Primary Glomerulonephritis Systemic Lupus Erythematosus (SLE)

Renal Cell Carcinoma (RCC) Renal Artery Stenosis / Renal Vein

Thrombosis Urologic

Reflux Nephropathy Stones Frequent chronic UTI’s

What is Transplant?What is Transplant?

Definition: The transfer of a tissue or organ from one part of

the body to another within the same person The transfer of a tissue or organ from one

individual to another individual. This is usually done surgically

Transplant is the treatment of choice for renal failure. It offers the best opportunity for optimum medical, social, psychological and vocational rehabilitation.

2 Basic Transplant Options2 Basic Transplant Options

Deceased Donor Transplant Brain Death (DBD)

• Determined by a neurologist • Patient is on a ventilator at time of donation

Declared Cardiac Death (DCD)• Ventilator support is withdrawn in the OR• Determined by the patient’s critical care doctor• Lack of blood flow can damage organs

Donor family provides consent to donate organs/ tissues Living Donor Transplant

Patient receives kidney from a living related or non-related donor

UNOS Wait ListUNOS Wait List

As of 4/3/09 - US - 109,294 waiting for organ transplant US - 83,913 waiting for kidneys

WI - 1,538 awaiting transplant WI - 1,115 waiting for kidneys

UWHC – 724 on transplant wait lists UWHC – 495 waiting for kidneys

Average Waiting List TimeAverage Waiting List Time

The average waiting time at UW Hospital depends on the recipient blood type:

• O=2-3 Years• B=2-2.5 Years• A=1-1.5 Years• AB=6 Months

Each center has a different waiting time

Blood Type CompatibilityBlood Type Compatibility

Recipient Blood Type Compatible Donors

O O

B B or O

A A or O

AB A, B, AB or O

The OperationThe Operation

Transplanted kidney’s artery & vein attached to recipient’s iliacs

An incision is made in bladder & ureter is attached

UW Health Transplant ExperienceUW Health Transplant Experience1966 kidney transplant program established,

including deceased & live donor transplants

1997 OPO ranked most effective in the U.S.

2000 laparoscopic kidney donor nephrectomy began

2003 1st "humanitarian" live-donor kidney transplant

1st paired exchange transplant

2004 desensitization program started

donor mentor program developedIn various years since 1996, the UW Transplant Program has been ranked the 1st or 2nd most active kidney transplant center in the U.S. and has consistently performed in the top five kidney transplant centers nationally.

Why is Living Donor Transplant Why is Living Donor Transplant Recommended?Recommended?

Longer Kidney Survival 8-12 years for deceased donor transplant 12-20 years for living donor transplant

Reduce Need for Future Re-Transplant Shorter Wait Times for Transplant Surgery Scheduled for Convenience Healthy Donor Kidney

Adult Kidney Graft Survival Rates 1995- 2005

93%90%

87%

81%

65%

96%

55%

72%76%

80%

86%

90%

50%

60%

70%

80%

90%

100%

1 year 2 year 3 year 4 year 5 year 10 year

Perc

enta

ge

Living Donor Deceased Donor

Source: UW Health Transplant database. Represents the total number of kidney transplants from 1/1/1995 through 12/31/2005. Includes all kidneys transplanted, including multi-organ transplants.

01/24/2007

Source: UWHC Database Office, October 2008.

UW Kidney Transplant Graft Survival For Patients Age 65+

98.49%

84.61%

91.35%

84.61%84.61%

89.06%

55.36% 55.36%

61.86%64.70%

71.98%

82.23%

40%

50%

60%

70%

80%

90%

100%

1 2 3 4 5 6

Years Post-Transplant

Su

rviv

al P

erce

nta

ge

Living Donor Deceased Donor

Benefits of Living Donor Transplant Benefits of Living Donor Transplant (continued)(continued)

Able to Return to Work Kidney Works Right Away May Be a Closer Genetic Match Lower Cost Increase Kidneys Available for Transplants Improve Quality of Life

Why Don’t More Patients Get A Why Don’t More Patients Get A Living Donor?Living Donor?

Don’t have enough information Fearful for the donor’s safety Don’t understand the donor’s experience Can’t bring themselves to ask Waiting for someone to offer Don’t want family/friends to feel obligated Don’t want to be a burden Refuse to accept kidney from adult children

Finding a Living DonorFinding a Living Donor

The donor’s health is the goal in the screening. A risky transplant doesn’t help anyone.

Don’t rule anyone out. Let the Transplant Team decide if they are healthy enough.

Over 30% of donors screened are not approved. The screening for risks is very careful.

All medical costs for kidney donor exam and surgery are paid by the patient’s insurance or Medicare. Donor pays only travel and hotel. Lost wages can be a financial impact – depending upon employer sick/vacation/disability leave policies.

Donors are given many chances to change mind.

Living Donor CriteriaLiving Donor Criteria

18 years of age or older Good physical & mental health No chronic kidney stones No diabetes No current/recent cancer Not a lot overweight High blood pressure may be considered Other medical issues checked case-by-case

Donor Evaluation ProcessDonor Evaluation Process

3 basic steps for the donor Review medical history with Transplant

Coordinator by phone Provide blood sample for compatibility

testing (done locally with mail-in test kit) Full medical evaluation at UWHC in

Madison

Donor’s Medical ExamDonor’s Medical Exam Complete medical history & Physical exam Talk with a medical doctor about any medical issues Talk with a surgeon about surgery and risks Chest X-ray – checks for any lung or heart problems EKG (electrocardiogram) – checks heart health 24-hour urine collection – checks kidney health Urine test – checks kidney health CT/CAT scan – looks at abdomen organs, kidneys, and kidney blood

vessels – checks to see if anatomy would work for surgery Glucose test – screens for diabetes Other blood tests – includes clotting study Virus screening – checking for hepatitis, HIV, syphilis, or other virus Social Work and/or Health Psychology visit – to see if mental health or

other stress might make it hard for a donor to make health choices or to recover after surgery

Donor Advocate – to ensure donor is fully informed and consenting

Donor Selection CommitteeDonor Selection Committee

Meets monthly Includes:

transplant surgeons medical doctors - nephrologists transplant fellows physician assistants social workers dietician transplant coordinators Head of in-patient transplant nurses Living Donor Advocate

Prospective donors are presented & transplant candidacy is determined

About 30 percent of possible donors ruled out

So What Are theSo What Are theKidney Donor’s Risks?Kidney Donor’s Risks?

Many studies of have researched donor safety Long-term studies tracking kidney donors up to

40 years Many common fears about kidney donor safety

are not true Will discuss 3 basic areas of donor risks

Surgical risks Long-term health impacts Emotional/psychological impacts

Surgical RisksSurgical RisksSame complications as any other surgery - kidney donors have fewer than typical surgery patient because screening ensures they are healthy

Less than 1% of all kidney donors have any surgical problems

Small issues: problems with anesthesia infection wound healing issues collapsed lung fluid in the lungs (pneumonia) pain

Bigger problems: bleeding blood clots death

Long-Term Health ImpactsLong-Term Health Impacts

Area of biggest fears & most misinformation in general public

Common misconceptions Donor will get kidney disease/failure Donor’s lifespan will be shorter Donor will need major lifestyle adjustments for

one kidney

Kidney Donor Health Kidney Donor Health Average person with 2 healthy kidneys has 8-10 times

kidney function body needs Within 3-6 months of donation, remaining kidney adjusts

to being single kidney Most recent study – University of Minnesota – published

January 2009 Kidney donor life expectancy same as general population Lower rates of kidney disease/failure No lifestyle changes expected

One area of concern – possible risk of high blood pressure

Emotional/Psychological Impacts of Emotional/Psychological Impacts of Kidney DonationKidney Donation

Common for recipients to fear that the donor may have regrets

Most kidney donors have good experience Most feel good about helping the kidney

patient & some feel more self-esteem Over 90% of kidney donors say they would

make the same choice again Emotional struggles are not common, but

possible; more likely if the transplant does not go as planned

Open NephrectomyOpen Nephrectomy

Laproscopic NephrectomyLaproscopic Nephrectomy

Donor HospitalizationDonor Hospitalization

Laparoscopic procedure using scope and cameras to remove kidney (utilized 95% of the time)

• Stay about 3-4 days

Open donor nephrectomy; larger incision • Stay about 4-5 days

Donor RecoveryDonor Recovery

Time to return to work Laparoscopic: 3-6 weeks Open nephrectomy: 6-8 weeks

First clinic visit with surgeon about 2-4 weeks after discharge

No additional medicines or diet changes Follow-up visit at month 4 and 1 year Annual physical with local physician thereafter

Donor Safety – What IfDonor Safety – What IfWorst Case Scenario?Worst Case Scenario?

If an organ donor (any “vital” organ including kidney, liver segment, lung segment, partial pancreas, small bowel segment) later needs a kidney transplant, national policy provides priority on kidney wait list

Cause of organ failure doesn’t matter Donor gets points equal to 4-years wait time Likely that others in family/community may volunteer

to help by donating Statistical chance of this scenario is very unlikely Safety-net provides peace of mind

Other Living Donation TerminologyOther Living Donation Terminology

Desensitization Paired Exchange or Kidney Swap Humanitarian (Non-Directed) Donors Living Donor Mentor Program Living Donor Advocate Donor Matching Websites or Services

So - How Do I Ask?So - How Do I Ask?

Patients often find it difficult to ask for a kidney donor

Many patients wait for someone to offer

Not all interested candidates will automatically offer

Gaps of CommunicationGaps of Communication

Role Play #1

Situation - Parent Talking to Teen

Gaps of CommunicationGaps of Communication

Role Play #2

Situation – Married Couple Has Different Plans for the Night

Gaps of CommunicationGaps of Communication

Role Play #3

Situation – Patient who can’t quite bring themselves to ask the question

Gaps of CommunicationGaps of Communication

Role Play #4

Situation – Patient with really poor communication skills

Filling In Communication GapsFilling In Communication Gaps

What Do These Patients Really Mean? I’d like to talk to you about something very

personal. Do you have some time right now? My health is failing because I have kidney disease. Dialysis is very difficult physically, and disrupts my

day-to-day life. My doctor’s recommend living donation transplant

as the best treatment option for me. Asking for a kidney donation is very difficult. This

conversation is awkward for both of us. I would be honored if you would consider being

evaluated and possibly donating a kidney for my transplant.

Continuing the ConversationContinuing the Conversation I want you to have time to think about this. I don’t

expect an answer right now. I have some reading and video materials that can

provide more information for you to think about. I don’t want you to feel pressured, so I will not

bring this up again – it is your choice if/when we discuss this topic further.

If you don’t approach me about this in the future, I will understand you don’t feel ready to pursue kidney donation – and I will not pressure you.

It is OK to say no. I won’t be offended or hurt if you choose not to pursue kidney donation.

Continuing the ConversationContinuing the Conversation

I understand the sacrifice involved in kidney donation and recognize that saying no doesn’t mean you don’t care about me or love me.

Donating a kidney is a difficult decision – and you may say no for reasons that have nothing to do with your feelings about me.

Be assured I am pursuing other treatment options, including the wait list for a deceased donor kidney. I am also talking to other potential donors.

Living donation is the best treatment option, but is not the only treatment available.

No matter what you decide, I will feel the same about you and continue to value our relationship in the same ways.

Internet ResourcesInternet Resources UW Health Website

Health Facts for You Patient Education Videos www.uwhealth.org/transplant

National Kidney Foundation Patient Education & Advocacy Living Donor Message Board www.kidney.org

American Society of Transplant Surgeons

Patient Education Videos www.asts.org

UNOS (United Network for Organ Sharing)

Transplant Data www.unos.org

Transplant Living Patient Education project of

UNOS www.transplantliving.org

Transplant Experience Patient Education Materials &

Videos www.transplantexperience.com

- William Penn

I expect to pass through life but once. If therefore, there can be any kindness I can show, or any good thing I can do to any fellow being, let me do it now and not defer or neglect it, as I shall not pass this way again.

Dottie the DotDottie the Dot