PKD. Living Donation. Saturday, March 25, MFMER slide-1

Transcription

1 PKD Living Donation Saturday, March 25, MFMER slide-1

2 Agenda Independent Living Donor Advocate (ILDA) Role Responsibilities Processes Involved Where I Can Find More Information Living Donor Social Worker Role and Responsibilities Financial Resources for Donors How Do I Find A Living Donor What Donors Really Think About Donating 2017 MFMER slide-2

3 Role of the Independent Living Donor Advocate (ILDA) All transplant centers in the United States are required to provide an ILDA or ILDA team for all potential donors Living organ donation is completely voluntary so protection of the donors health and safety must be ensured Sole job is to look after the interests of the donor 2017 MFMER slide-3

4 ILDA ILDA functions independently from the transplant candidate (recipient) team ILDA insures the donor s confidentiality is protected throughout the donation process Recipient confidentiality is also protected 2017 MFMER slide-4

5 ILDA or ILDA Team Responsibilities Represent and educate the donor about the process Protect and promote interests of the donor Respect the donor s decision and ensure decision to become a kidney donor is Informed Free from pressure by the recipient, any family, or friends 2017 MFMER slide-5

6 ILDA Supports Donor Through Entire Process Consent process Evaluation process Hospitalization After hospitalization Follow-up at 6, 12, and 24 months Phone calls Correspondence Face to face visits 2017 MFMER slide-6

7 ILDA Assists Donor In Obtaining / Understanding Relevant Information Consent process Evaluation process Surgical procedure Medical and psychosocial (including financial risks) Importance of and commitment to postdonation follow-up 2017 MFMER slide-7

8 What is the Consent Process? Deciding to become a kidney donor takes time and careful consideration Informed consent process helps you understand all aspects of donation Do you have adequate information and understanding regarding risks, benefits and outcomes- to you and the recipient? Committing to the follow-up requirements Adhering to legal prohibitions against accepting payment or financial profit for your kidney 2017 MFMER slide-8

9 Consent Process 2 Understanding the treatment options for the recipient Decision must be completely voluntary Right to delay or stop the donation process at any time-confidentiality regarding the decision is protected 2017 MFMER slide-9

10 What is Involved in the Evaluation Process? Individual appointments with your donor team Nephrologist, Surgeon, ILDA, Living Donor Social Worker, Psychiatrist, Donor Nurse Coordinators, Transplant Center Financial Coordinator, Pharmacist, Dietician, and others as indicated 2017 MFMER slide-10

11 Evaluation Process - 2 Full physical examination-including testing Full psychosocial evaluation-including financial assessment Determination that you are healthy enough to donate a kidney 2017 MFMER slide-11

12 What is Involved in the Surgical Procedure? Laparoscopic surgery technique using several small incisions Surgery lasts a few hours Hospital stay of 2-3 days Discharge to home after the hospital (or a hotel if you are far from home) 2017 MFMER slide-12

13 What are the Medical Risks? As with any operation risks are involved They may include infection, bleeding, blood clots, fatigue Rare complications include heart attack, stroke, death (extremely rare, but a possibility and must be taken into consideration) Rare but possible need for a kidney transplant in the future 2017 MFMER slide-13

14 What are the Financial Risks? Personal expenses of travel, meals, lodging, child care Lost income for the donor and possibly the caregiver Use of sick time and vacation time Impact on health, life and disability insurance Life long medical follow up at your expense 2017 MFMER slide-14

15 What are the Psychosocial Risks? Possible problems with body image due to incisional scar Possible depression or anxiety after surgery Feelings of emotional pain if the recipient doesn t do well Changes to your lifestyle Impact on your family 2017 MFMER slide-15

16 Why is Follow-Up After Donation Important? To assess ongoing well being after donation To address any complications that may arise after the donor surgery To continue to support you after donation To report the results to UNOS as they track donor outcomes throughout the United States 2017 MFMER slide-16

17 What are the benefits of Living Donation Increased sense of well-being and quality of life The ability to improve the quality of life for the transplant recipient The sense of giving the gift of life to another in need 2017 MFMER slide-17

18 Where Can I Go for More Information? UNOS (United Network of Organ Sharing) UNOS Transplant Living National Kidney Foundation (Spanish and English) 2017 MFMER slide-18

19 Living Donor Social Worker Role Member of the Living Donor Team Assists the donor team in determining the appropriateness of donation for candidate Completes the psychosocial evaluation Explores mental health history including depression, anxiety, counseling, psychiatric hospitalization, suicidal thinking or attempts Assesses chemical use history Assesses Increased Risk Behavior 2017 MFMER slide-19

20 Living Donor Social Worker Role - 2 Assesses availability of social supports for practical and emotional assistance through the donation process. Assists the donor and family - manage and cope with the donation process pre and post surgically. Assists with financial assessment and shares potential availability of resources for donors 2017 MFMER slide-20

21 Financial Resources for Donors National Living Donor Assistance Center (NLDAC) American Transplant Foundation (ATF) Income restrictions apply National Kidney Foundation MFMER slide-21

22 Financial Resources For Donors - 2 AST (American Society of Transplantation) Live Donor Toolkit Donor Leave Laws and Tax Deductions/Credits for Living Donors There may be other programs in your state or area, please check with your Transplant Center Living Donor Social Worker for further information 2017 MFMER slide-22

23 How do I find a Living Donor? There are many pathways to finding a donor Word of mouth through family, friends, faith communities, health clubs, volunteer groups Send letters - Christmas/Holiday, high school reunions, college, fraternity/sorority groups, alumni associations, military friends Other ideas from your transplant coordinator or social worker 2017 MFMER slide-23

24 Continued: Social Media Donor Champion Programs (available through some Transplant Centers) American Transplant Foundation-Living Donor Connector 2017 MFMER slide-24

25 Resources for Finding a Living Donor American Transplant foundation-living Donor Connector National Kidney Foundation National Kidney Registry Living Kidney Donor Network MFMER slide-25

26 What do donors really thing about donation? If I would have known about living donation, I would have done it 40 years ago. M.L. If I had to do it over again, I would do it in a heart beat. P.O. It is a humbling and emotional (positive) experience. J.G. I just feel excited, not nervous at all, is that normal. J. R MFMER slide-26

27 What Do Donors Really Think? -2 I knew there were risks, I weighed those risks carefully, but rode the wave of positivity J.R. My only regret is that I have only two kidneys D.S. They test you very thoroughly to make sure you re healthy to be able to donate. The great thing is, I was healthy, and the other great thing is I was able to donate B.S MFMER slide-27

28 What Do Donors Really Think? -3 It was a no-brainer-i was given a great opportunity to give a kidney and I did. C.C. I felt awesome, you feel like you re giving life M.B. I m glad I was the chosen one to be able to help my uncle out. A.G. They don t let just anybody do it, but I m not just anybody-i m healthy all around-and determined-it s the best thing I ve ever done. E.D MFMER slide-28

29 Thank you! 2017 MFMER slide-29