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  • 1. LIVING DONOR KIDNEY TRANSPLANT Kelli Willard West, MSSW, APSW Living Donation Outreach Educator
  • 2.  
  • 3. 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
  • 4. 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 UTI’s
  • 5. 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.
  • 6. 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        • Ventilator support is withdrawn in the OR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 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
  • 7. 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
  • 8. Average 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
  • 9. Blood Type Compatibility A, B, AB or O AB A or O A B or O B O O Compatible Donors Recipient Blood Type
  • 10. The Operation
    • Transplanted kidney’s artery & vein attached to recipient’s iliacs
    • An incision is made in bladder & ureter is attached
  • 11. 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 1 st "humanitarian" live-donor kidney transplant
    • 1 st paired exchange transplant
    • 2004 desensitization program started
        • donor mentor program developed
    In various years since 1996, the UW Transplant Program has been ranked the 1 st or 2 nd most active kidney transplant center in the U.S. and has consistently performed in the top five kidney transplant centers nationally.
  • 12. 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
  • 13. 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
  • 14.  
  • 15. 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
  • 16. Why Don’t More Patients Get A 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
  • 17. Finding 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.
  • 18. 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
  • 19. 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
  • 20. Donor’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
  • 21. 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
  • 22. So What Are the 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
  • 23. Surgical Risks
    • Same 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
  • 24. Long-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
  • 25. 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
  • 26. 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
  • 27. Open Nephrectomy
  • 28. Laproscopic Nephrectomy
  • 29. 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
  • 30. 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
  • 31. Donor Safety – What If 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
  • 32. 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
  • 33. 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
  • 34. Gaps of Communication
    • Role Play #1
    • Situation - Parent Talking to Teen
  • 35. Gaps of Communication
    • Role Play #2
    • Situation – Married Couple Has Different Plans for the Night
  • 36. Gaps of Communication
    • Role Play #3
    • Situation – Patient who can’t quite bring themselves to ask the question
  • 37. Gaps of Communication
    • Role Play #4
    • Situation – Patient with really poor communication skills
  • 38. Filling 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.
  • 39. Continuing 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.
  • 40. Continuing 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.
  • 41. Internet Resources
    • UW Health Website
      • Health Facts for You
      • Patient Education Videos
    • National Kidney Foundation
      • Patient Education & Advocacy
      • Living Donor Message Board
    • American Society of Transplant Surgeons
      • Patient Education Videos
    • UNOS (United Network for Organ Sharing)
      • Transplant Data
    • Transplant Living
      • Patient Education project of UNOS
    • Transplant Experience
      • Patient Education Materials & Videos
  • 42. - 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.
  • 43. Dottie the Dot