Pre Transplant Kidney/Pancreas Educational Session - Miami Transplant Institute

2. Pre Transplant Kidney/PancreasEducational Session Miami Transplant Institute

3. About the Transplant Program • Started in 1979 • Have performed over 4,000 kidney transplants • 200+ kidney transplants per year (279 in 2009) • 25-30 kidney/pancreas transplants per year • Only center in FL performing all transplant types • One of the top 10 busiest centers in the US (4th in nation 2007 behind UCLA, UPMC, UCSF) • Success rates for transplant and patient survival are some of the best in the country

4. Contact Information for theUnited Network for Organ Sharing (UNOS) • www.unos.org • Patient Services Hotline for Concerns or Grievances 1-888-894-6361

5. Who is on Your Transplant Team? • Transplant Surgeon • Transplant Nephrologist • Transplant Nurse Coordinator • Social Worker • Pre Transplant Secretary • Donor Team • Patient Financial Services • Dietician • Transplant Psychologist/Addiction Team

6. Transplant Team-Surgeons • George Burke, MD-Director K/P Program • Dianne Peers, RN-305-355-5156 • Gaetano Ciancio, MD-Asst. Director • Tyann Barnes, RN-305-355-5082 • Linda Chen, MD. Director Donor Team • Michelle Gascon, RN-305-355-5194 • Junichiro Sageshima, MD • Michelle Gascon, RN-305-355-5194

7. Transplant Team-Nephrologists • David Roth, MD-Medical Director • Warren Kupin, MD, Asst Director • Giselle Guerra, MD, Medical Director Donor Team • Adela Mattiazzi, MD, Transplant Nephrology

8. Facts about Kidney/SPK Transplant • Kidney, SPK transplant is a “treatment” for ESRD, diabetes, it is not a cure • Transplantation requires taking life-long anti-rejection medication, follow-up and compliance • Transplantation may prolong your life expectancy

9. Selection Criteria for Kidney/Pancreas Transplant The following criteria are used by the Transplant Committee to determine candidacy

10. Inclusion Criteria for Kidney • Initiation of dialysis therapy or kidney function of 20% or less (calculated or measured) • Age-Infants (10kg) to adult (no limit) • Hepatitis B or C without cirrhosis (evaluated by liver biopsy) • HIV infection on HAART therapy (may qualify for current study protocol)

11. Exclusion Criteria(Absolute and Relative) • Malignancy within the past 2 years (other than skin cancer) • Severe Cardiac Disease • Severe Pulmonary pathology • Hepatitis B or C with documented cirrhosis on liver biopsy • HIV + and not on HAART therapy • Evidence of current alcohol or substance abuse • Morbid Obesity (BMI > 45, unless vascular access has failed) • Current psychiatric or psychological pathology

12. Psychosocial Criteria • Ability to follow a complex regime of medication and post transplant follow-up (compliance) by oneself or by an identified support person • Identified support person available • Coverage for medications • Transportation

13. What is my next step to becoming a Transplant Candidate? • Class Session-attending today • 1st Appointment with the Transplant Team • Physician, Nurse Coordinator, Social Worker, Dietician, lab work • Must bring additional medical records and testing done by Nephrologist and PCP, GYN and Dietician • copy of most recent labs for Dietician • Bring copies of driver’s license and all insurance cards • Bring a Sweater • Bring a snack • Appointment may last hours

14. What testing is required? • Bladder ultrasound-if indicated • Gallbladder/Abdominal ultrasound (good for 2 years)-not required for all • Cardiac evaluation (annual) • One of most important aspects of evaluation • Includes EKG, echo, stress test • Cardiac catheterization if indicated • Chest x-ray (annual) • TB test (annual) • Immunizations • Pneumovax-good for 5 years • Hepatitis B vaccine • Varicella Titer-Zoster IGG • Gynecological evaluation (done by PCP, good for 2 years, unless indicated otherwise) • Vascular studies *any testing done in the 6 months is accepted

15. Optional testing… • Pulmonary evaluation • CT of abdomen/pelvis (PKD) • UGI/endoscopy • Colonoscopy (PCP) • Dental evaluation (outside) • Sustacal Challenge Test (SPK) • Ophthalmology evaluation • Hepatology consult/liver biopsy-hepatitis (PCP) • All other consults (outside) *any other testing as directed by your Past medical history

16. When and Where Will My Testing be Done? • Diagnostic testing is required to be arranged by the Transplant Center to be performed at UM/JMH or one of the outlying clinics • Biscayne Imaging • MICC • Does not include “standard of care” or pre-existing conditions testing • GYN, oncology, surgical intervention, hepatology/liver biopsy

17. Meeting with the Transplant Social Worker-Psychosocial Requirements • Funding for transplant medications • $4,500-$5,000 per month • Must check insurance coverage and co-pays • If transplant is covered by Medicare primary, anti rejection medications will be covered by Medicare B at 80%-not Medicare D • Must have a Primary Caregiver • Housing if not a local resident-Transplant House • Some insurance plans offer travel and lodging benefit • Transportation to clinic (no driving 4-6 weeks) • Transplant Center/Pompano Satellite • Lab visits 3 x/ week (month 1) • 2 x/ week (month 2 ) • 1 x / week (month 3) • Every other week (4-6 months) • Eventually once a month or every other month depending on status

18. Psychosocial-Advanced Directives • If you are unable to make medical decisions an Advanced Directive: • Lets your doctor know the type of medical care you want • Allows you to choose someone you trust (health care surrogate) to carry out your wishes regarding your medical treatment • Your Transplant Social Worker can provide you with an Advanced Directive. If you have one already, bring a copy to the hospital when you are admitted for transplant

19. When will I be listed? • Meet criteria established at this center for listing • Complete required diagnostic testing and have F/U appt. for initial medical approval • Majority approval by Transplant Team (Listing Conference-every Monday

20. Will blood testing be done? • Yes, required in our Lab at the Transplant Center (Miami) • Non-Fasting • Several tubes

21. Type 50% “O”-universal donor 30% ”A” >10% “B” >5% “AB”-universal recipient Donor “O” only “A” or “O” “B” or “O” “AB”, “A”, “B”, or “O” *Deceased Donor-”O” only to type “O” Blood Type

22. Genetic Typing • You inherit 3 Genes from Mother and 3 from Father=6 Total • Siblings • 50%-3 Gene Match • 25%-6 Gene Match-Identical • 25%-0 Gene Match *Minimum “1” gene match for Deceased List

23. Cross match • Mixing of blood between Donor and Recipient • Can be performed may times during evaluation • Will be final test performed prior to transplant • PRA has bearing on results of cross match

24. What is PRA? • “Panel Reactive Antibody” • What causes antibodies • Previous Transplants • Transfusions • Pregnancy • Infection *can have the greatest bearing on your waiting time and will be sent monthly when listed

25. What are my Transplant Options? • Living Related Donor (LRD) • Living Unrelated Donor (LURD) • Deceased Donor-Waiting List

26. Living Donation • Donors an be identified any time (3 at a time only) • To Referral Team • To Nurse Coordinator • Donor must make contact • All donors living here or elsewhere will be phone-screened and provided information and instructions

27. Goal of Living Donation… • To make sure that the living donor is not only “willing” to donate but also “able” to donate a kidney safely • Risks of the surgical procedure are minimal if medically cleared by the Donor Team • Potential donor needs to contact Nurse Coordinator directly for referral to Donor Team • Donor can be blood tested any time after recipients blood is drawn

28. How do I qualify to be a Kidney Donor? • 18-65 years old • No diabetes • No hypertension • Healthy with no physical problems with kidney • Family member-blood relative • Extended family member-Non-blood relative • Only 3 donors will be blood tested at a time • Only 1 donor in active workup at a time

29. Who is on the Donor Team? • Transplant Surgeon • Transplant Nephrologist • Donor Nurse Coordinator • Donor Advocate • Laboratory personnel • Secretarial staff • Transplant Psychologist *team will manage all aspects of Donor testing

30. Kidney Donation facts… • All testing is done as an outpatient –preferably at the Transplant Center • There are no costs to the donor for evaluation, surgery or immediate post-operative care • Recovery time is 2-6 weeks • No heavy lifting for 6 weeks • Women can become pregnant after kidney donation • Surgery is 3-4 hours • Hospitalization is 3-4 days • The donor can be ruled out for medical/psychological reasons at any point in donation process

31. How Do I Begin the Donor Process? • Blood testing • Blood Type • Genetic Typing • Cross-match • Local donors • Tested at Transplant Center • Out-of Area Donors • Will FedEx blood for testing against recipient

32. What is the Next Step? • Blood testing • Urine testing • Chest x-ray • EKG • TB test • GTT (if diabetes in family) • Gynecological evaluation

33. Final Donor Testing… • Spiral CT Scan of Kidneys • Psychological Evaluation • History and Physical • Surgical Consult • Anesthesia Consult • Dietician Consult

34. Laparoscopic Nephrectomy Done for left sided kidney removals, beginning to do right lap cases (individual basis) Recovery is quicker Less pain Improved cosmetic results Higher rate of organ donation Decision is based on spiral CT results Open Nephrectomy For right sided removal (individual basis) Longer hospitalization (additional day in the hospital Surgical Options…

35. Laparoscopic Nephrectomy

36. Benefits of having Living Donor vs. Deceased Transplant • Usually a better genetic match • Kidney usually functions right away • Transplant can be planned • Do not have to wait on waiting list for donor • Transplant may last longer-sometimes twice as long as deceased transplant

37. Deceased Transplant (DD)How long am I going to wait? • Kidney • Average 2 to 3 years in Miami • Can happen at any time from listing

38. Who receives the kidney? • Based on a point system UNOS-new list is run for each kidney • Seniority (days on the list) • Genetic match (better match, more points) • Antibody level (PRA)-higher lever, more points • Up to age 18-”Kid points” • Highest point with negative cross match receives kidney

39. Are there other options for listing? • Expanded Criteria Donor (ECD) list • Discussed at listing with transplant physician • Signed consent is required • Separate from standard list • Donor age 60 or older • Donor 50-59 with two of the following • Donor medical history of hypertension • Creatinine above 1.5 (normal 0.8-1.4) • Cause of death from stroke

40. Other options… • Multiple listing • Allowed by OPTN policy • Up to individual center to accept as candidate • May increase chances of local offer • May shorten waiting time-no guarantee • Wait Time Transfer • Coordinated by transferring center • UNOS Form required to be signed by patient/Coordinator/Physician • Must be approved by transferring center or you may risk losing all previous wait time

41. How are organs distributed? • Local (UM/JMH list) • Regional – UNOS region 3 (south east states) • National- over 80,000 on waiting list • Mandatory share • Perfect match, highest priority

42. What are my responsibilities to maintain my active listed status? • Keep testing updated annually • Cardiac • Chest x-ray • TB • Every other year (unless otherwise indicated) • Gallbladder US • Gynecological

43. Listed Patient responsibilities (con’t) • Visit transplant center every 6 months • Notify transplant team of any changes in address, phone, insurance or travel • Must send monthly PRA • Notify transplant team of any changes in health or medical urgency issues • Out of vascular access

44. Transplant Team’s Responsibility to our patient • Listing letter • Patient • Nephrologist • Dialysis center • Annual Listed letter • Listed status continues, testing required, hold status issues • Patient • Nephrologist • Dialysis center • Insurance company • Transplant Informed Consent • Signed by patient/Coordinator/Transplant Physician • Copy to you and your patient file

45. Listed Status • Active (1)-can be called at any time • Hold (7)-will not be called for transplant but time continues to accrue. Can be placed on hold at any time due to medical, psychological or social issues • Medically Urgent (5)- highest priority, medical condition requires transplant ASAP

46. Can be called 24/7 If on dialysis, finish treatment-not first come, first served Can call in 5-10 people for kidney transplant, unless mandatory share Call in 2 people for SPK/PA Must remain on stand-by for up to 24 hours May have multiple “dry-runs” What happens if you are called?

47. Instructions for Admission prior to Surgery • Map with directions will be provided • Have “goodie bag” ready • List of meds/meds • Essential toiletries • PD supplies • If you need financial assistance, bring a copy of income tax papers

48. Don’t bring… • Valuables • Plants or flowers • Visitors under the age of 14

50. OR Time/Hospital Stay • Surgery time • Kidney 4-6 hours • SPK 6-12 hours • Pancreas 4-6 • Time in hospital • Discharge teaching will begin from time of admission for transplant-have support system available • Discharge when medically stable-even if you may not feel ready • Kidney 5-6 days, may go home with Foley catheter or other new devices (glucometer) • SPK 7 days • Donors • 3 Days Laparoscopic Nephrectomy • 4 days Open Nephrectomy