LIVING DONOR KIDNEY TRANSPLANT

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LIVING DONOR KIDNEY TRANSPLANT

• Kelli Willard West, MSSW, APSW
• Living Donation Outreach Educator

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End Stage Renal Disease (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

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Common 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 UTIs

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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.

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2 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• Ventilator support is withdrawn in the OR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 patients 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

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UNOS 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

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Average Waiting List Time

• The average waiting time at UW Hospital depends
  on the recipient blood type
• O2-3 Years
• B2-2.5 Years
• A1-1.5 Years
• AB6 Months
• Each center has a different waiting time

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Blood Type Compatibility
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The Operation

• Transplanted kidneys artery vein attached to
  recipients iliacs
• An incision is made in bladder ureter is
  attached

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UW Health Transplant Experience

• 1966 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 developed

In 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.
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Why is Living Donor Transplant 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

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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
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Benefits of Living Donor Transplant (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

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Why Dont More Patients Get A Living Donor?

• Dont have enough information
• Fearful for the donors safety
• Dont understand the donors experience
• Cant bring themselves to ask
• Waiting for someone to offer
• Dont want family/friends to feel obligated
• Dont want to be a burden
• Refuse to accept kidney from adult children

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Finding a Living Donor

• The donors health is the goal in the screening.
  A risky transplant doesnt help anyone.
• Dont 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 patients 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.

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Living 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

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Donor 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

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Donors 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

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Donor 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

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So What Are theKidney Donors 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

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Surgical Risks

• Same complications as any other surgery - kidney
  donors have fewer than typical surgery patient
  because screening ensures they are healthy

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

• Bigger problems
• bleeding
• blood clots
• death

Less than 1 of all kidney donors have any
surgical problems
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Long-Term Health Impacts

• Area of biggest fears most misinformation in
  general public
• Common misconceptions
• Donor will get kidney disease/failure
• Donors lifespan will be shorter
• Donor will need major lifestyle adjustments for
  one kidney

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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

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Emotional/Psychological Impacts of Kidney 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

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Open Nephrectomy
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Laproscopic Nephrectomy
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Donor 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

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Donor 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

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Donor Safety What IfWorst 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 doesnt 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

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Other 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

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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

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Gaps of Communication

• Role Play 1
• Situation - Parent Talking to Teen

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Gaps of Communication

• Role Play 2
• Situation Married Couple Has Different Plans
  for the Night

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Gaps of Communication

• Role Play 3
• Situation Patient who cant quite bring
  themselves to ask the question

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Gaps of Communication

• Role Play 4
• Situation Patient with really poor
  communication skills

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Filling In Communication Gaps

• What Do These Patients Really Mean?
• Id 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 doctors 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.

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Continuing the Conversation

• I want you to have time to think about this. I
  dont expect an answer right now.
• I have some reading and video materials that can
  provide more information for you to think about.
• I dont 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 dont approach me about this in the
  future, I will understand you dont feel ready to
  pursue kidney donation and I will not pressure
  you.
• It is OK to say no. I wont be offended or hurt
  if you choose not to pursue kidney donation.

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Continuing the Conversation

• I understand the sacrifice involved in kidney
  donation and recognize that saying no doesnt
  mean you dont 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.

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Internet 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

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- 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.

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Dottie the Dot