The Transplant Experience: Is your patient ready?

1. The Transplant Experience:Is your patient ready? Jennifer Mize, LCSW Amy Woodard, RN, BSN, CNN, CCTC UNC Center for Transplant Care UNC Center for Transplant Care Kidney Transplant Clinical Social Worker Lead Transplant Coordinator

2. Objectives • Review national/regional kidney transplant allocation system • Review the transplant criteriaand evaluation protocol • Discuss common barriers and absolute contraindications to transplant • Review and discuss how dialysis staff can assist their patients before, during and after transplant

3. As of April 5, 2013 • 127,966 people nationwide are waiting for transplant. • 102,566 of those people are waiting for kidney transplant. • Every 10 minutes, a new patient is added to the wait list for an organ • 77 transplants take place daily, but 18 people die each day while waiting for an organ transplant—one person every 80 minutes.

4. In North Carolina……. • There are 3 OPOs (organ procurement organizations/regions): • Carolina Donor Services—Greenville, NC (serves 78 counties in northwest, central, and eastern areas of NC and Danville, VA) • Lifeshareof the Carolinas—Charlotte, NC (serves 22 counties in southwest area of NC) • LifeNet Health—Virginia Beach, VA (serves most of VA and Currituck County, NC) • There are 5 transplant centers: • UNC Hospitals—Chapel Hill, NC • North Carolina Baptist Hospital—Winston-Salem, NC • Duke University Hospital—Durham, NC • Pitt County Memorial Hospital (now Vidant Medical Center)—Greenville, NC • Carolinas Medical Center—Charlotte, NC

5. Kidney transplant centers in NC

6. When a kidney is available.. • OPO notifies transplant center/centers if they have a pt. on the match list • Patients at top of match list are brought into their transplant center for testing, cross match, and are seen by physicians • First person on match list that has clearance from physicians AND has negative cross match gets kidney • A deceased donor has TWO kidneys so 2 patients can get transplanted from 1 donor

7. Referrals/Evaluation process • Begins with a referral from the dialysis unit or from the patient’s neprhologist. • Patients are screened for any contraindications to transplant. These can vary from center to center. These can be made available to you upon request from any transplant center. • Some are absolute contraindications, meaning patient is not eligible for consideration (i.e. Active TB, Advanced heart/lung disease, malignancy, active drug abuse, etc.) • Some are relative contraindications, meaning once these contraindications are resolved or controlled, the patient may again be eligible for consideration (i.e. vascular disease, lack of social support, uncontrolled HIV, active lupus/auto-immune disease, lack of interest in transplant, etc.)

8. If an acceptable referral…… • Evaluation begins and includes (but is not limited to):Labs, EKG, CXR, Renal U/S, Echocardiogram, Health maintenance screening (Pap, Mammogram, PSA, Colonoscopy, Dental), Psychosocial evaluation, Financial coordinator consultation, Transplant Nephrologist, Cardiologist, and Transplant Surgeon • After the evaluation is complete and the patient is determined to be a suitable candidate by the multidisciplinary team (“Selection Committee”), then his/her name is placed on the kidney transplant wait list.

9. On “the” list!! • Patients are notified by phone and in writing after listing. • REMEMBER… being “listed” is an ongoing process! • It does NOT start with a referral • It does NOT end with being approved by the selection committee • Patients who are on the wait list are re-evaluated annually. • Patients need to know that their status on the wait list could change, if their medical and/or social circumstances change after listing. • Once listed, patients can often change between “active” and “on hold” status. • For example: • If someone is admitted to a hospital, then they would likely be placed on “hold” until they are well again. • If someone needs to have their testing updated, they could be placed on “hold” until it is completed.

10. What makes a “good” transplant candidate? • Do they understand the transplant process, including the long term responsibilities? • A transplant does not last a lifetime. • Yes, you will have to take medication for as long as that kidney is working. • Do they have an adequate financial plan and/or insurance coverage to cover their needs before, during & after transplant? • Do they understand that SSDI, Medicare, etc… may not last after transplant? • Do they need encouragement to finish a GED or learn new job skills so that they can return to work following transplant (and have insurance benefits)?

11. What makes a “good” transplant candidate? • Do they have reliable transportation? • Can they get to UNC if they get an organ offer at 2am? • Are they dependent on Medicaid transportation? • If Medicaid is their only source of transportation, a patient will need a “Plan B”. • Have they been compliant with their dialysis recommendations? • This includes attendance, early sign offs, history of no-shows, fluid overload, medication compliance, and/or behavior. • Think of dialysis as “practice” for transplant…

12. What makes a “good” transplant candidate? • Is there a history of Substance Abuse? • “Anything” in the last 5 years will require something, e.g. random tox screens • More significant histories of SA abuse could require up to 6 months of SA counseling and random tox screens, all of which must be negative • Is there a history of Mental Illness or Developmental Disability? • Are they under the appropriate psychiatric care? • Do they have responsible support people/caregivers? • Are they living in supportive housing, e.g. ALF, group home? • Have they been “stable” in the last few years?

13. What makes a “good” transplant candidate? • Do they have an “appropriate” caregiving plan? • Do they have people who can stay with them & help them out during their recovery? • Drive them to appointments? Or bring them to UNC for emergent issues? • Help them remember their new medications? • Patients will need a plan for the first 4-6 weeks following transplant surgery • Any potential complications could add to this recovery period!

14. How can the dialysis center help? • Report the following to the Transplant Center: • Up-to-date contact information • Recent hospitalization, infection, or illness • Non-compliance with dialysis, medications, or diet • Suspicion of substance abuse • Changes in social support system • Changes in insurance coverage

15. How can the dialysis center help? • Is the patient going out of town? • Send monthly PRA, even if patient is waitlist hold • Up-to-date health maintenance (e.g. mammogram, PPD, dental, colonoscopy) • Patient received a transplant at another center • Death • Educate your patients about the above before referral

16. Sometimes, it takes a village……. • Get education materials from your local transplant center • Have patient support groups – invite past patients that have been transplanted • Ask staff from local transplant center to speak at your unit (to staff or patients) • On line education materials • DVD’s that can be shown on TV’s at your unit • Post information on bulletin board in your unit

17. Resources • UNC Center for Transplant Care: www.unctransplant.org • United Network for Organ Sharing (UNOS): www.unos.org • National Kidney Foundation (NKF):www.kidney.org • Carolina Donor Services (CDS): www.carolinadonorservices.org

18. THANK YOU! Amy & Jen