LIVING DONOR KIDNEY TRANSPLANT

1. LIVING DONOR KIDNEY TRANSPLANT Kelli Willard West, MSSW, APSW Living Donation Outreach Educator

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by a neurologist Patient is on a ventilator at time of donation Declared Cardiac Death (DCD) Ventilator support is withdrawn in the OR Determined by the patient’s critical care doctor Lack of blood flow can damage organs Donor family provides consent to donate organs/ tissues Living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

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 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.

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

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 theKidney 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 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

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 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 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 • 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

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