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  1. 1. LIVING DONOR KIDNEY TRANSPLANT Kelli Willard West, MSSW, APSW Living Donation Outreach Educator
  2. 3. End Stage Renal Disease (ESRD) or Kidney Failure <ul><li>Can occur at any age </li></ul><ul><li>Requires renal replacement therapy (dialysis) or kidney transplant to sustain life </li></ul><ul><li>Time varies between diagnosis and need for dialysis or transplant, depending upon disease </li></ul>
  3. 4. Common Causes of Kidney Failure <ul><li>Diabetes Type I & II (diabetic nephropathy) </li></ul><ul><li>Hypertension </li></ul><ul><li>Hereditary </li></ul><ul><ul><li>Polycystic Kidney Disease (PCKD) </li></ul></ul><ul><li>Auto-Immune </li></ul><ul><ul><li>Primary Glomerulonephritis </li></ul></ul><ul><ul><li>Systemic Lupus Erythematosus (SLE) </li></ul></ul><ul><li>Renal Cell Carcinoma (RCC) </li></ul><ul><li>Renal Artery Stenosis / Renal Vein Thrombosis </li></ul><ul><li>Urologic </li></ul><ul><ul><li>Reflux Nephropathy </li></ul></ul><ul><ul><li>Stones </li></ul></ul><ul><ul><li>Frequent chronic UTI’s </li></ul></ul>
  4. 5. What is Transplant? <ul><li>Definition: </li></ul><ul><ul><li>The transfer of a tissue or organ from one part of the body to another within the same person </li></ul></ul><ul><ul><li>The transfer of a tissue or organ from one individual to another individual. This is usually done surgically </li></ul></ul><ul><li>Transplant is the treatment of choice for renal failure. It offers the best opportunity for optimum medical, social, psychological and vocational rehabilitation. </li></ul>
  5. 6. 2 Basic Transplant Options <ul><li>Deceased Donor Transplant </li></ul><ul><ul><li>Brain Death (DBD) </li></ul></ul><ul><ul><ul><li>Determined by a neurologist </li></ul></ul></ul><ul><ul><ul><li>Patient is on a ventilator at time of donation </li></ul></ul></ul><ul><ul><li>Declared Cardiac Death (DCD) </li></ul></ul><ul><ul><ul><li>Ventilator support is withdrawn in the OR </li></ul></ul></ul><ul><ul><ul><li>Determined by the patient’s critical care doctor </li></ul></ul></ul><ul><ul><ul><li>Lack of blood flow can damage organs </li></ul></ul></ul><ul><ul><li>Donor family provides consent to donate organs/ tissues </li></ul></ul><ul><li>Living Donor Transplant </li></ul><ul><ul><li>Patient receives kidney from a living related or non-related donor </li></ul></ul>
  6. 7. UNOS Wait List <ul><li>As of 4/3/09 - </li></ul><ul><li>US - 109,294 waiting for organ transplant </li></ul><ul><li>US - 83,913 waiting for kidneys </li></ul><ul><li>WI - 1,538 awaiting transplant </li></ul><ul><li>WI - 1,115 waiting for kidneys </li></ul><ul><li>UWHC – 724 on transplant wait lists </li></ul><ul><li>UWHC – 495 waiting for kidneys </li></ul>
  7. 8. Average Waiting List Time <ul><li>The average waiting time at UW Hospital depends on the recipient blood type: </li></ul><ul><ul><ul><ul><li>O=2-3 Years </li></ul></ul></ul></ul><ul><ul><ul><ul><li>B=2-2.5 Years </li></ul></ul></ul></ul><ul><ul><ul><ul><li>A=1-1.5 Years </li></ul></ul></ul></ul><ul><ul><ul><ul><li>AB=6 Months </li></ul></ul></ul></ul><ul><li>Each center has a different waiting time </li></ul>
  8. 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
  9. 10. The Operation <ul><li>Transplanted kidney’s artery & vein attached to recipient’s iliacs </li></ul><ul><li>An incision is made in bladder & ureter is attached </li></ul>
  10. 11. UW Health Transplant Experience <ul><li>1966 kidney transplant program established, </li></ul><ul><li>including deceased & live donor transplants </li></ul><ul><li>1997 OPO ranked most effective in the U.S. </li></ul><ul><li>2000 laparoscopic kidney donor nephrectomy began </li></ul><ul><li>2003 1 st &quot;humanitarian&quot; live-donor kidney transplant </li></ul><ul><li>1 st paired exchange transplant </li></ul><ul><li>2004 desensitization program started </li></ul><ul><ul><ul><li>donor mentor program developed </li></ul></ul></ul>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.
  11. 12. Why is Living Donor Transplant Recommended? <ul><li>Longer Kidney Survival </li></ul><ul><ul><li>8-12 years for deceased donor transplant </li></ul></ul><ul><ul><li>12-20 years for living donor transplant </li></ul></ul><ul><li>Reduce Need for Future Re-Transplant </li></ul><ul><li>Shorter Wait Times for Transplant </li></ul><ul><li>Surgery Scheduled for Convenience </li></ul><ul><li>Healthy Donor Kidney </li></ul>
  12. 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
  13. 15. Benefits of Living Donor Transplant (continued) <ul><li>Able to Return to Work </li></ul><ul><li>Kidney Works Right Away </li></ul><ul><li>May Be a Closer Genetic Match </li></ul><ul><li>Lower Cost </li></ul><ul><li>Increase Kidneys Available for Transplants </li></ul><ul><li>Improve Quality of Life </li></ul>
  14. 16. Why Don’t More Patients Get A Living Donor? <ul><li>Don’t have enough information </li></ul><ul><li>Fearful for the donor’s safety </li></ul><ul><li>Don’t understand the donor’s experience </li></ul><ul><li>Can’t bring themselves to ask </li></ul><ul><li>Waiting for someone to offer </li></ul><ul><li>Don’t want family/friends to feel obligated </li></ul><ul><li>Don’t want to be a burden </li></ul><ul><li>Refuse to accept kidney from adult children </li></ul>
  15. 17. Finding a Living Donor <ul><li>The donor’s health is the goal in the screening. A risky transplant doesn’t help anyone. </li></ul><ul><li>Don’t rule anyone out. Let the Transplant Team decide if they are healthy enough. </li></ul><ul><li>Over 30% of donors screened are not approved. The screening for risks is very careful. </li></ul><ul><li>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. </li></ul><ul><li>Donors are given many chances to change mind. </li></ul>
  16. 18. Living Donor Criteria <ul><li>18 years of age or older </li></ul><ul><li>Good physical & mental health </li></ul><ul><li>No chronic kidney stones </li></ul><ul><li>No diabetes </li></ul><ul><li>No current/recent cancer </li></ul><ul><li>Not a lot overweight </li></ul><ul><li>High blood pressure may be considered </li></ul><ul><li>Other medical issues checked case-by-case </li></ul>
  17. 19. Donor Evaluation Process <ul><li>3 basic steps for the donor </li></ul><ul><li>Review medical history with Transplant Coordinator by phone </li></ul><ul><li>Provide blood sample for compatibility testing (done locally with mail-in test kit) </li></ul><ul><li>Full medical evaluation at UWHC in Madison </li></ul>
  18. 20. Donor’s Medical Exam <ul><li>Complete medical history & Physical exam </li></ul><ul><li>Talk with a medical doctor about any medical issues </li></ul><ul><li>Talk with a surgeon about surgery and risks </li></ul><ul><li>Chest X-ray – checks for any lung or heart problems </li></ul><ul><li>EKG ( electrocardiogram) – checks heart health </li></ul><ul><li>24-hour urine collection – checks kidney health </li></ul><ul><li>Urine test – checks kidney health </li></ul><ul><li>CT/CAT scan – looks at abdomen organs, kidneys, and kidney blood vessels – checks to see if anatomy would work for surgery </li></ul><ul><li>Glucose test – screens for diabetes </li></ul><ul><li>Other blood tests – includes clotting study </li></ul><ul><li>Virus screening – checking for hepatitis, HIV, syphilis, or other virus </li></ul><ul><li>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 </li></ul><ul><li>Donor Advocate – to ensure donor is fully informed and consenting </li></ul>
  19. 21. Donor Selection Committee <ul><li>Meets monthly </li></ul><ul><li>Includes: </li></ul><ul><ul><li>transplant surgeons </li></ul></ul><ul><ul><li>medical doctors - nephrologists </li></ul></ul><ul><ul><li>transplant fellows </li></ul></ul><ul><ul><li>physician assistants </li></ul></ul><ul><ul><li>social workers </li></ul></ul><ul><ul><li>dietician </li></ul></ul><ul><ul><li>transplant coordinators </li></ul></ul><ul><ul><li>Head of in-patient transplant nurses </li></ul></ul><ul><ul><li>Living Donor Advocate </li></ul></ul><ul><li>Prospective donors are presented & transplant candidacy is determined </li></ul><ul><li>About 30 percent of possible donors ruled out </li></ul>
  20. 22. So What Are the Kidney Donor’s Risks? <ul><li>Many studies of have researched donor safety </li></ul><ul><li>Long-term studies tracking kidney donors up to 40 years </li></ul><ul><li>Many common fears about kidney donor safety are not true </li></ul><ul><li>Will discuss 3 basic areas of donor risks </li></ul><ul><ul><ul><ul><li>Surgical risks </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Long-term health impacts </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Emotional/psychological impacts </li></ul></ul></ul></ul>
  21. 23. Surgical Risks <ul><li>Same complications as any other surgery - kidney donors have fewer than typical surgery patient because screening ensures they are healthy </li></ul>Less than 1% of all kidney donors have any surgical problems <ul><li>Small issues: </li></ul><ul><li>problems with anesthesia </li></ul><ul><li>infection </li></ul><ul><li>wound healing issues </li></ul><ul><li>collapsed lung </li></ul><ul><li>fluid in the lungs (pneumonia) </li></ul><ul><li>pain </li></ul><ul><li>Bigger problems: </li></ul><ul><li>bleeding </li></ul><ul><li>blood clots </li></ul><ul><li>death </li></ul>
  22. 24. Long-Term Health Impacts <ul><li>Area of biggest fears & most misinformation in general public </li></ul><ul><li>Common misconceptions </li></ul><ul><ul><li>Donor will get kidney disease/failure </li></ul></ul><ul><ul><li>Donor’s lifespan will be shorter </li></ul></ul><ul><ul><li>Donor will need major lifestyle adjustments for one kidney </li></ul></ul>
  23. 25. Kidney Donor Health <ul><li>Average person with 2 healthy kidneys has 8-10 times kidney function body needs </li></ul><ul><li>Within 3-6 months of donation, remaining kidney adjusts to being single kidney </li></ul><ul><li>Most recent study – University of Minnesota – published January 2009 </li></ul><ul><ul><li>Kidney donor life expectancy same as general population </li></ul></ul><ul><ul><li>Lower rates of kidney disease/failure </li></ul></ul><ul><ul><li>No lifestyle changes expected </li></ul></ul><ul><li>One area of concern – possible risk of high blood pressure </li></ul>
  24. 26. Emotional/Psychological Impacts of Kidney Donation <ul><li>Common for recipients to fear that the donor may have regrets </li></ul><ul><li>Most kidney donors have good experience </li></ul><ul><li>Most feel good about helping the kidney patient & some feel more self-esteem </li></ul><ul><li>Over 90% of kidney donors say they would make the same choice again </li></ul><ul><li>Emotional struggles are not common, but possible; more likely if the transplant does not go as planned </li></ul>
  25. 27. Open Nephrectomy
  26. 28. Laproscopic Nephrectomy
  27. 29. Donor Hospitalization <ul><li>Laparoscopic procedure using scope and cameras to remove kidney (utilized 95% of the time) </li></ul><ul><ul><ul><li>Stay about 3-4 days </li></ul></ul></ul><ul><li>Open donor nephrectomy; larger incision </li></ul><ul><ul><ul><li>Stay about 4-5 days </li></ul></ul></ul>
  28. 30. Donor Recovery <ul><li>Time to return to work </li></ul><ul><ul><li>Laparoscopic: 3-6 weeks </li></ul></ul><ul><ul><li>Open nephrectomy: 6-8 weeks </li></ul></ul><ul><li>First clinic visit with surgeon about 2-4 weeks after discharge </li></ul><ul><li>No additional medicines or diet changes </li></ul><ul><li>Follow-up visit at month 4 and 1 year </li></ul><ul><li>Annual physical with local physician thereafter </li></ul>
  29. 31. Donor Safety – What If Worst Case Scenario? <ul><li>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 </li></ul><ul><li>Cause of organ failure doesn’t matter </li></ul><ul><li>Donor gets points equal to 4-years wait time </li></ul><ul><li>Likely that others in family/community may volunteer to help by donating </li></ul><ul><li>Statistical chance of this scenario is very unlikely </li></ul><ul><li>Safety-net provides peace of mind </li></ul>
  30. 32. Other Living Donation Terminology <ul><li>Desensitization </li></ul><ul><li>Paired Exchange or Kidney Swap </li></ul><ul><li>Humanitarian (Non-Directed) Donors </li></ul><ul><li>Living Donor Mentor Program </li></ul><ul><li>Living Donor Advocate </li></ul><ul><li>Donor Matching Websites or Services </li></ul>
  31. 33. So - How Do I Ask? <ul><li>Patients often find it difficult to ask for a kidney donor </li></ul><ul><li>Many patients wait for someone to offer </li></ul><ul><li>Not all interested candidates will automatically offer </li></ul>
  32. 34. Gaps of Communication <ul><li>Role Play #1 </li></ul><ul><li>Situation - Parent Talking to Teen </li></ul>
  33. 35. Gaps of Communication <ul><li>Role Play #2 </li></ul><ul><li>Situation – Married Couple Has Different Plans for the Night </li></ul>
  34. 36. Gaps of Communication <ul><li>Role Play #3 </li></ul><ul><li>Situation – Patient who can’t quite bring themselves to ask the question </li></ul>
  35. 37. Gaps of Communication <ul><li>Role Play #4 </li></ul><ul><li>Situation – Patient with really poor communication skills </li></ul>
  36. 38. Filling In Communication Gaps <ul><li>What Do These Patients Really Mean? </li></ul><ul><ul><li>I’d like to talk to you about something very personal. Do you have some time right now? </li></ul></ul><ul><ul><li>My health is failing because I have kidney disease. </li></ul></ul><ul><ul><li>Dialysis is very difficult physically, and disrupts my day-to-day life. </li></ul></ul><ul><ul><li>My doctor’s recommend living donation transplant as the best treatment option for me. </li></ul></ul><ul><ul><li>Asking for a kidney donation is very difficult. This conversation is awkward for both of us. </li></ul></ul><ul><ul><li>I would be honored if you would consider being evaluated and possibly donating a kidney for my transplant. </li></ul></ul>
  37. 39. Continuing the Conversation <ul><ul><li>I want you to have time to think about this. I don’t expect an answer right now. </li></ul></ul><ul><ul><li>I have some reading and video materials that can provide more information for you to think about. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>It is OK to say no. I won’t be offended or hurt if you choose not to pursue kidney donation. </li></ul></ul>
  38. 40. Continuing the Conversation <ul><ul><li>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. </li></ul></ul><ul><ul><li>Donating a kidney is a difficult decision – and you may say no for reasons that have nothing to do with your feelings about me. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><ul><li>Living donation is the best treatment option, but is not the only treatment available. </li></ul></ul><ul><ul><li>No matter what you decide, I will feel the same about you and continue to value our relationship in the same ways. </li></ul></ul>
  39. 41. Internet Resources <ul><li>UW Health Website </li></ul><ul><ul><li>Health Facts for You </li></ul></ul><ul><ul><li>Patient Education Videos </li></ul></ul><ul><ul><li>www.uwhealth.org/transplant </li></ul></ul><ul><li>National Kidney Foundation </li></ul><ul><ul><li>Patient Education & Advocacy </li></ul></ul><ul><ul><li>Living Donor Message Board </li></ul></ul><ul><ul><li>www.kidney.org </li></ul></ul><ul><li>American Society of Transplant Surgeons </li></ul><ul><ul><li>Patient Education Videos </li></ul></ul><ul><ul><li>www.asts.org </li></ul></ul><ul><li>UNOS (United Network for Organ Sharing) </li></ul><ul><ul><li>Transplant Data </li></ul></ul><ul><ul><li>www.unos.org </li></ul></ul><ul><li>Transplant Living </li></ul><ul><ul><li>Patient Education project of UNOS </li></ul></ul><ul><ul><li>www.transplantliving.org </li></ul></ul><ul><li>Transplant Experience </li></ul><ul><ul><li>Patient Education Materials & Videos </li></ul></ul><ul><ul><li>www.transplantexperience.com </li></ul></ul>
  40. 42. - William Penn <ul><li>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. </li></ul>
  41. 43. Dottie the Dot