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Journey to Transplant: How Patients Facing Organ Failure Get on the Transplant Waiting List Christine Lee, RN, BSN, CCTC L...
“How To Be” <ul><li>Being in Action! </li></ul><ul><li>The Answers Are In the Room </li></ul><ul><li>“ Report out” on Ques...
Question to Run on? <ul><li>What can you do to educate your patients or community on the Journey to Transplant? </li></ul>
Introductions <ul><li>Christine Lee </li></ul><ul><li>Leeanne Shinn </li></ul>
Objectives <ul><li>Understand the referral, evaluation and listing process for organ transplant – kidney transplantation <...
Treatment Options <ul><ul><li>Heart/Lung/Liver failure: Organ transplant  </li></ul></ul><ul><ul><ul><li>Heart - LVAD as b...
What is the goal of kidney transplant? <ul><li>Freedom from dialysis  </li></ul><ul><li>Better quality of life </li></ul><...
<ul><li>Fig. 1.  Overall unadjusted actuarial survival probabilities for transplanted recipients and haemodialysis patient...
Kidney Transplant <ul><li>Cons: </li></ul><ul><ul><li>Not for everyone: compliance, health </li></ul></ul><ul><ul><li>Long...
Referral Process <ul><li>For kidney transplant - Referral made by physician, dialysis social worker, insurance case manage...
Selecting a Transplant Program <ul><li>The experience of the transplant team  </li></ul><ul><li>Insurance coverage </li></...
Evaluation Process <ul><li>Patient Education Orientation  </li></ul><ul><li>Consultation with the transplant team </li></u...
 
Evaluation Process <ul><li>Other consultation as needed </li></ul><ul><ul><li>Cardiology, Hepatology, Infectious Disease, ...
Patient Selection Criteria <ul><li>Must be accepted as a candidate before listing </li></ul><ul><li>Selection Criteria </l...
Patient Selection Criteria <ul><li>After completion of the workup, Selection Committee will review the case </li></ul><ul>...
Listing Process <ul><li>Medical clearance by the Selection Committee </li></ul><ul><li>Financial clearance </li></ul><ul><...
UNOS Wait List <ul><li>National Wait List - United Network for Organ Sharing (UNOS) </li></ul><ul><li>107,337 patients are...
U.S. Waiting List Candidates by Organs <ul><li>Based on current OPTN data as reported on May 7, 2010. Data subject to chan...
UNOS Wait List <ul><li>About 16,000 transplants per year </li></ul><ul><ul><li>6,000 living donor transplant (doubled over...
 
 
Allocation Strategies <ul><li>Dialysis Wait Time:  </li></ul><ul><ul><li>wait time starts as initial dialysis start date  ...
Is there a way to reduce the waiting time?  <ul><li>Expanded Criteria Donor (ECD) kidney </li></ul><ul><ul><li>A kidney fr...
Living Donor Transplant Options <ul><li>Compatible Recipient-Donor pairs  </li></ul><ul><li>Desensitization Protocols </li...
 
Living Donation <ul><li>Related vs. Unrelated </li></ul><ul><li>Requirements  </li></ul><ul><ul><li>Age 18 ~ 65 </li></ul>...
Blood type compatibility chart Candidate’s Blood Type O A B AB Donor’s Blood Type O A or O B or O A, B, AB or O
Compatible Recip-Donor Pairs <ul><li>Blood types are compatible </li></ul><ul><li>Cross match testing indicates low risk o...
But… <ul><li>What if the donor and the recipient </li></ul><ul><li>are not compatible? </li></ul>
<ul><ul><li>At least one third of patients with a willing living donor are excluded due to incompatible blood type and pos...
Desensitization <ul><li>Advantages include increasing the donor pool and the friend or love one can donate to the intended...
Blood Type Incompatible <ul><li>Living donor has different blood type </li></ul><ul><li>No other donor available </li></ul...
ABOi <ul><li>Molecules present or absent on blood cells determine blood type </li></ul><ul><li>When blood types are mixed,...
ABOi Therapies <ul><li>Plasmapheresis- remove antibodies </li></ul><ul><li>Immunoglobulin-decrease antibodies which are de...
Paired Donation <ul><li>Initially slow to take off because 1984 NOTA “unlawful to acquire organ in exchange for valuable c...
Donor Exchange <ul><li>Recipient/donor pair have incompatible blood types </li></ul><ul><li>Other donor/recipient pair hav...
Paired donor exchange <ul><li>Pair #1 </li></ul><ul><li>Recip blood type = A </li></ul><ul><li>Donor blood type = B </li><...
Paired Donor Exchange <ul><li>Pair #1   Pair #2 </li></ul><ul><li>Recipient = A    Recipient = B </li></ul><ul><li>Donor  ...
Down Side of Paired Donation <ul><li>If one living donor backs out then the other pair is disadvantaged </li></ul><ul><li>...
Donor Exchange “Chains” <ul><li>Participation of multiple pairs of donors and recipients </li></ul><ul><li>Usually started...
Donor Chains <ul><li>Living donor can donate local to where they live </li></ul><ul><li>Kidneys are shipped using establis...
 
Donor Chains <ul><li>Very time intensive, high work load for low yield </li></ul><ul><li>Only about 120 done to date </li>...
In short, there are new options <ul><li>“ Standard” living donor transplant </li></ul><ul><li>Highly-sensitized </li></ul>...
Conclusion <ul><li>Timely referral to transplant center </li></ul><ul><li>Communication and collaboration between the refe...
Question to Run on? <ul><li>What can you do to educate your patients or community on the Journey to Transplant? </li></ul>...
Transition to  Breakout Session #2 <ul><li>Next Breakout Session starts at 11:30 </li></ul><ul><li>Please see your agenda ...
Journey to Transplant: How Patients Facing Organ Failure Get on the Transplant Waiting List Christine Lee, RN, BSN, CCTC L...
“How To Be” <ul><li>Being in Action! </li></ul><ul><li>The Answers Are In the Room </li></ul><ul><li>“ Report out” on Ques...
Question to Run on? <ul><li>What can you do to educate your patients or community on the Journey to Transplant? </li></ul>
Introductions <ul><li>Christine Lee </li></ul><ul><li>Leeanne Shinn </li></ul>
Objectives <ul><li>Understand the referral, evaluation and listing process for organ transplant – kidney transplantation <...
Treatment Options <ul><ul><li>Heart/Lung/Liver failure: Organ transplant  </li></ul></ul><ul><ul><ul><li>Heart - LVAD as b...
What is the goal of kidney transplant? <ul><li>Freedom from dialysis  </li></ul><ul><li>Better quality of life </li></ul><...
<ul><li>Fig. 1.  Overall unadjusted actuarial survival probabilities for transplanted recipients and haemodialysis patient...
Kidney Transplant <ul><li>Cons: </li></ul><ul><ul><li>Not for everyone: compliance, health </li></ul></ul><ul><ul><li>Long...
Referral Process <ul><li>For kidney transplant - Referral made by physician, dialysis social worker, insurance case manage...
Selecting a Transplant Program <ul><li>The experience of the transplant team  </li></ul><ul><li>Insurance coverage </li></...
Evaluation Process <ul><li>Patient Education Orientation  </li></ul><ul><li>Consultation with the transplant team </li></u...
 
Evaluation Process <ul><li>Other consultation as needed </li></ul><ul><ul><li>Cardiology, Hepatology, Infectious Disease, ...
Patient Selection Criteria <ul><li>Must be accepted as a candidate before listing </li></ul><ul><li>Selection Criteria </l...
Patient Selection Criteria <ul><li>After completion of the workup, Selection Committee will review the case </li></ul><ul>...
Listing Process <ul><li>Medical clearance by the Selection Committee </li></ul><ul><li>Financial clearance </li></ul><ul><...
UNOS Wait List <ul><li>National Wait List - United Network for Organ Sharing (UNOS) </li></ul><ul><li>107,337 patients are...
U.S. Waiting List Candidates by Organs <ul><li>Based on current OPTN data as reported on May 7, 2010. Data subject to chan...
UNOS Wait List <ul><li>About 16,000 transplants per year </li></ul><ul><ul><li>6,000 living donor transplant (doubled over...
 
 
Allocation Strategies <ul><li>Dialysis Wait Time:  </li></ul><ul><ul><li>wait time starts as initial dialysis start date  ...
Is there a way to reduce the waiting time?  <ul><li>Expanded Criteria Donor (ECD) kidney </li></ul><ul><ul><li>A kidney fr...
Living Donor Transplant Options <ul><li>Compatible Recipient-Donor pairs  </li></ul><ul><li>Desensitization Protocols </li...
 
Living Donation <ul><li>Related vs. Unrelated </li></ul><ul><li>Requirements  </li></ul><ul><ul><li>Age 18 ~ 65 </li></ul>...
Blood type compatibility chart Candidate’s Blood Type O A B AB Donor’s Blood Type O A or O B or O A, B, AB or O
Compatible Recip-Donor Pairs <ul><li>Blood types are compatible </li></ul><ul><li>Cross match testing indicates low risk o...
But… <ul><li>What if the donor and the recipient </li></ul><ul><li>are not compatible? </li></ul>
<ul><ul><li>At least one third of patients with a willing living donor are excluded due to incompatible blood type and pos...
Desensitization <ul><li>Advantages include increasing the donor pool and the friend or love one can donate to the intended...
Blood Type Incompatible <ul><li>Living donor has different blood type </li></ul><ul><li>No other donor available </li></ul...
ABOi <ul><li>Molecules present or absent on blood cells determine blood type </li></ul><ul><li>When blood types are mixed,...
ABOi Therapies <ul><li>Plasmapheresis- remove antibodies </li></ul><ul><li>Immunoglobulin-decrease antibodies which are de...
Paired Donation <ul><li>Initially slow to take off because 1984 NOTA “unlawful to acquire organ in exchange for valuable c...
Donor Exchange <ul><li>Recipient/donor pair have incompatible blood types </li></ul><ul><li>Other donor/recipient pair hav...
Paired donor exchange <ul><li>Pair #1 </li></ul><ul><li>Recip blood type = A </li></ul><ul><li>Donor blood type = B </li><...
Paired Donor Exchange <ul><li>Pair #1   Pair #2 </li></ul><ul><li>Recipient = A    Recipient = B </li></ul><ul><li>Donor  ...
Down Side of Paired Donation <ul><li>If one living donor backs out then the other pair is disadvantaged </li></ul><ul><li>...
Donor Exchange “Chains” <ul><li>Participation of multiple pairs of donors and recipients </li></ul><ul><li>Usually started...
Donor Chains <ul><li>Living donor can donate local to where they live </li></ul><ul><li>Kidneys are shipped using establis...
 
Donor Chains <ul><li>Very time intensive, high work load for low yield </li></ul><ul><li>Only about 120 done to date </li>...
In short, there are new options <ul><li>“ Standard” living donor transplant </li></ul><ul><li>Highly-sensitized </li></ul>...
Conclusion <ul><li>Timely referral to transplant center </li></ul><ul><li>Communication and collaboration between the refe...
Question to Run on? <ul><li>What can you do to educate your patients or community on the Journey to Transplant? </li></ul>...
Transition to Lunch <ul><li>Lunch is from 12:30 – 1:30  </li></ul><ul><li>In the Crystal Ballroom, on the main level of th...
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    1. 1. Journey to Transplant: How Patients Facing Organ Failure Get on the Transplant Waiting List Christine Lee, RN, BSN, CCTC Leeanne Shinn, RN UCLA Kidney and Pancreas Transplant Program
    2. 2. “How To Be” <ul><li>Being in Action! </li></ul><ul><li>The Answers Are In the Room </li></ul><ul><li>“ Report out” on Questions to Run-on: </li></ul><ul><ul><li>Scribe </li></ul></ul><ul><ul><li>Spokesperson </li></ul></ul><ul><li>All Teach / All Learn </li></ul>
    3. 3. Question to Run on? <ul><li>What can you do to educate your patients or community on the Journey to Transplant? </li></ul>
    4. 4. Introductions <ul><li>Christine Lee </li></ul><ul><li>Leeanne Shinn </li></ul>
    5. 5. Objectives <ul><li>Understand the referral, evaluation and listing process for organ transplant – kidney transplantation </li></ul><ul><li>Provide overview of the national wait list and review various deceased donor options </li></ul><ul><li>Discuss living donor transplant options </li></ul>
    6. 6. Treatment Options <ul><ul><li>Heart/Lung/Liver failure: Organ transplant </li></ul></ul><ul><ul><ul><li>Heart - LVAD as bridge to transplant </li></ul></ul></ul><ul><ul><li>End stage renal disease (ESRD): </li></ul></ul><ul><ul><ul><li>Dialysis </li></ul></ul></ul><ul><ul><ul><li>Kidney Transplant </li></ul></ul></ul><ul><ul><li>Type 1 diabetes: </li></ul></ul><ul><ul><ul><li>Insulin therapy </li></ul></ul></ul><ul><ul><ul><li>Pancreas alone (PA), kidney/pancreas transplant (SPK) </li></ul></ul></ul>
    7. 7. What is the goal of kidney transplant? <ul><li>Freedom from dialysis </li></ul><ul><li>Better quality of life </li></ul><ul><li>Prolongs life compared to dialysis </li></ul><ul><li>To maximize survival </li></ul>
    8. 8. <ul><li>Fig. 1. Overall unadjusted actuarial survival probabilities for transplanted recipients and haemodialysis patients </li></ul><ul><li>Mazzuchi, N. et al. Nephrol. Dial. Transplant. 1999 14:2849-2854; doi:10.1093/ndt/14.12.2849 </li></ul>
    9. 9. Kidney Transplant <ul><li>Cons: </li></ul><ul><ul><li>Not for everyone: compliance, health </li></ul></ul><ul><ul><li>Long wait time due to organ shortage </li></ul></ul><ul><ul><li>Require strict adherence to daily medications </li></ul></ul><ul><ul><li>Transplant medications for life </li></ul></ul>
    10. 10. Referral Process <ul><li>For kidney transplant - Referral made by physician, dialysis social worker, insurance case manager or patient </li></ul><ul><li>Find a local transplant program </li></ul><ul><li>Necessary documents: </li></ul><ul><ul><li>H&P, Social worker note, most recent lab, cardiac tests, imaging studies, ABO </li></ul></ul><ul><ul><li>Medicare Entitlement Form (2728 form) </li></ul></ul><ul><li>Schedule an appointment with the transplant team for evaluation </li></ul>
    11. 11. Selecting a Transplant Program <ul><li>The experience of the transplant team </li></ul><ul><li>Insurance coverage </li></ul><ul><li>Geographical proximity to the program </li></ul><ul><ul><li>The travel time to the transplant center is important when patient is waiting for an organ and is a key factor considered in organ distribution. </li></ul></ul><ul><li>The quality and availability of pre- and post-transplant services. </li></ul><ul><li>Availability of friends and family for assistance </li></ul>
    12. 12. Evaluation Process <ul><li>Patient Education Orientation </li></ul><ul><li>Consultation with the transplant team </li></ul><ul><ul><li>Transplant Physician </li></ul></ul><ul><ul><li>Surgeon </li></ul></ul><ul><ul><li>Transplant Nurse Coordinator </li></ul></ul><ul><ul><li>Social Worker </li></ul></ul><ul><ul><li>Dietician </li></ul></ul>
    13. 14. Evaluation Process <ul><li>Other consultation as needed </li></ul><ul><ul><li>Cardiology, Hepatology, Infectious Disease, Psychiatry, Hematology, Dermatology, Oncology, etc </li></ul></ul><ul><li>Pending tests </li></ul><ul><ul><li>Lab: Blood type x2, HLA, PRA, serology </li></ul></ul><ul><ul><li>Cardiac tests: EKG, Stress test, Echocardiogram, Coronary angiogram </li></ul></ul><ul><ul><li>Radiology: CXR, renal/abdominal ultrasound, CT scan, MRI </li></ul></ul><ul><ul><li>Screening tests: PSA, pap smear, mammogram, colonoscopy </li></ul></ul>
    14. 15. Patient Selection Criteria <ul><li>Must be accepted as a candidate before listing </li></ul><ul><li>Selection Criteria </li></ul><ul><ul><li>In general, all end-stage renal failure patients who, after having been informed of the risks of the transplant surgery and the inevitable chronic immunosuppressive therapy, still express a clear desire for this modality of treatment, will be accepted as candidates for evaluation. </li></ul></ul><ul><li>Exclusion criteria </li></ul><ul><ul><li>Presence of disseminated or recent malignancy </li></ul></ul><ul><ul><li>Active infection </li></ul></ul><ul><ul><li>Severe coronary artery disease and/or peripheral vascular disease </li></ul></ul><ul><ul><li>Underlying disease states such as multiple myeloma, scleroderma, oxalosis, sickle-cell anemia </li></ul></ul><ul><ul><li>Serious psychosocial problems </li></ul></ul><ul><ul><li>Squamous cell skin cancer </li></ul></ul><ul><ul><li>Renal cell carcinomas </li></ul></ul><ul><ul><li>BMI > 35 </li></ul></ul><ul><ul><li>Partial insurance coverage </li></ul></ul><ul><ul><li>Patients that are wheelchair bound, require oxygen, or are severely disabled </li></ul></ul><ul><ul><li>Patients who are unwilling to accept blood transfusions under any circumstances while taking anticoagulations </li></ul></ul>
    15. 16. Patient Selection Criteria <ul><li>After completion of the workup, Selection Committee will review the case </li></ul><ul><li>The Committee is made up of Transplant Nephrologists, Surgeons, Nurse Coordinators, Social workers, dietician, pharmacist and other consultants </li></ul><ul><li>Once decision is made, the patient and physician will be notified in writing </li></ul>
    16. 17. Listing Process <ul><li>Medical clearance by the Selection Committee </li></ul><ul><li>Financial clearance </li></ul><ul><li>Eligibility for wait time accrual </li></ul><ul><ul><li>On maintenance dialysis </li></ul></ul><ul><ul><li>GFR 20 or less </li></ul></ul><ul><li>Notification within 10 days to the patient, physician and dialysis social worker </li></ul>
    17. 18. UNOS Wait List <ul><li>National Wait List - United Network for Organ Sharing (UNOS) </li></ul><ul><li>107,337 patients are waiting for all organs </li></ul><ul><li>84,000+ patients are waiting for kidney transplant </li></ul>
    18. 19. U.S. Waiting List Candidates by Organs <ul><li>Based on current OPTN data as reported on May 7, 2010. Data subject to change based on future data submission or correction. </li></ul>
    19. 20. UNOS Wait List <ul><li>About 16,000 transplants per year </li></ul><ul><ul><li>6,000 living donor transplant (doubled over 15 yrs) </li></ul></ul><ul><ul><li>10,000 deceased donor </li></ul></ul><ul><li>California Wait List </li></ul><ul><ul><li>16,250+ patients are waiting for kidney </li></ul></ul><ul><ul><li>Average wait time: 7 to 10 years </li></ul></ul>
    20. 23. Allocation Strategies <ul><li>Dialysis Wait Time: </li></ul><ul><ul><li>wait time starts as initial dialysis start date </li></ul></ul><ul><li>Dual organ transplant </li></ul><ul><ul><li>kidney/pancreas </li></ul></ul><ul><ul><li>Liver/Kidney </li></ul></ul><ul><ul><li>Heart/Kidney </li></ul></ul><ul><li>Multiple listing </li></ul>
    21. 24. Is there a way to reduce the waiting time? <ul><li>Expanded Criteria Donor (ECD) kidney </li></ul><ul><ul><li>A kidney from a donor age over 60 years or over age 50 with a history of HTN, cause of death due to CVA, or a terminal creatinine greater than 1.5 mg/d </li></ul></ul><ul><li>Hepatitis C list </li></ul><ul><ul><li>Only for the patients with hepatitis C </li></ul></ul><ul><li>Donation after cardiac death (DCD) </li></ul><ul><ul><li>A kidney from a donor who was declared dead based on a lack of a heartbeat. </li></ul></ul><ul><ul><li>These kidneys are less likely to function immediately & may have a greater risk of rejection </li></ul></ul><ul><li>The Centers for Disease Control (CDC) increased risk </li></ul><ul><ul><li>Higher risk for the transmission of viral disease including HIV & Hepatitis </li></ul></ul><ul><li>Donation Point </li></ul><ul><li>Living Donor Transplant </li></ul>
    22. 25. Living Donor Transplant Options <ul><li>Compatible Recipient-Donor pairs </li></ul><ul><li>Desensitization Protocols </li></ul><ul><li>Blood Type incompatible </li></ul><ul><li>Kidney Exchange Program </li></ul><ul><ul><li>AKA Paired Exchange or Chain Transplant </li></ul></ul>
    23. 27. Living Donation <ul><li>Related vs. Unrelated </li></ul><ul><li>Requirements </li></ul><ul><ul><li>Age 18 ~ 65 </li></ul></ul><ul><ul><li>Health Concerns (diabetes, high blood pressure, cancer, hepatitis, weight issue) </li></ul></ul><ul><ul><li>Lifestyle: substance abuse </li></ul></ul>
    24. 28. Blood type compatibility chart Candidate’s Blood Type O A B AB Donor’s Blood Type O A or O B or O A, B, AB or O
    25. 29. Compatible Recip-Donor Pairs <ul><li>Blood types are compatible </li></ul><ul><li>Cross match testing indicates low risk of early rejection </li></ul><ul><li>Donor can donate directly to recipient </li></ul>
    26. 30. But… <ul><li>What if the donor and the recipient </li></ul><ul><li>are not compatible? </li></ul>
    27. 31. <ul><ul><li>At least one third of patients with a willing living donor are excluded due to incompatible blood type and positive cross match </li></ul></ul><ul><li>35% of any two people will be blood type incompatible </li></ul><ul><li>30 % of patients needing a kidney transplant will be sensitized because of previous transplants, pregnancies or transfusions </li></ul>
    28. 32. Desensitization <ul><li>Advantages include increasing the donor pool and the friend or love one can donate to the intended recipient </li></ul><ul><li>Disadvantages include cost which averages approximately $30,000 </li></ul><ul><li>Decreased patient survival (5yr 87% vs. 94%) AJT 2004 </li></ul><ul><li>Unpredictable rates of accelerated rejection </li></ul><ul><li>Decreased graft survival (1yr. 84% vs. 96% ) AJT 2004 </li></ul><ul><li>Decreased 5 yr. graft survival (69% vs. 81%) AJT 2009 </li></ul>
    29. 33. Blood Type Incompatible <ul><li>Living donor has different blood type </li></ul><ul><li>No other donor available </li></ul><ul><li>Requires analysis of antibody levels </li></ul><ul><li>Insurance authorization for treatment </li></ul><ul><li>Pre-operative treatment protocol over several weeks to achieve safe window for transplantation with your living donor </li></ul>
    30. 34. ABOi <ul><li>Molecules present or absent on blood cells determine blood type </li></ul><ul><li>When blood types are mixed, these molecules act as antigens that trigger ABO incompatibility reaction </li></ul><ul><li>Preconditioning is done to cleanse the blood of these circulating antibodies and depends on blood type and amount of antibodies present </li></ul>
    31. 35. ABOi Therapies <ul><li>Plasmapheresis- remove antibodies </li></ul><ul><li>Immunoglobulin-decrease antibodies which are destructive to the graft </li></ul><ul><li>Splenectomy </li></ul><ul><li>Anti-CD20 Antibody (rituximab)- depletes CD20 protein which is found on the wall of most B cells </li></ul>
    32. 36. Paired Donation <ul><li>Initially slow to take off because 1984 NOTA “unlawful to acquire organ in exchange for valuable consideration” </li></ul><ul><li>2007 Senate bill “valuable consideration does not apply to paired donation” </li></ul>
    33. 37. Donor Exchange <ul><li>Recipient/donor pair have incompatible blood types </li></ul><ul><li>Other donor/recipient pair have incompatible blood types </li></ul><ul><li>Donors evaluated/accepted for donation </li></ul><ul><li>Donor/recipient pairs “exchange” donor kidneys </li></ul><ul><li>Exchange is anonymous until after surgery </li></ul>
    34. 38. Paired donor exchange <ul><li>Pair #1 </li></ul><ul><li>Recip blood type = A </li></ul><ul><li>Donor blood type = B </li></ul><ul><li>B to A is not compatible </li></ul><ul><li>Pair #2 </li></ul><ul><li>Recip blood type = B </li></ul><ul><li>Donor blood type = A </li></ul><ul><li>A to B is not compatible </li></ul>
    35. 39. Paired Donor Exchange <ul><li>Pair #1 Pair #2 </li></ul><ul><li>Recipient = A Recipient = B </li></ul><ul><li>Donor = B Donor = A </li></ul><ul><li>Blood-type incompatible Recip/Donor pairs </li></ul><ul><li>exchange blood-type compatible kidneys </li></ul>
    36. 40. Down Side of Paired Donation <ul><li>If one living donor backs out then the other pair is disadvantaged </li></ul><ul><li>Requires simultaneous O.R. start </li></ul>
    37. 41. Donor Exchange “Chains” <ul><li>Participation of multiple pairs of donors and recipients </li></ul><ul><li>Usually started by a non-directed or “altruistic” </li></ul><ul><li>One donor is “left over” to begin a new section of the chain </li></ul>
    38. 42. Donor Chains <ul><li>Living donor can donate local to where they live </li></ul><ul><li>Kidneys are shipped using established OPO protocols on commercial flights </li></ul><ul><li>Do not need simultaneous O.R. start times </li></ul>
    39. 44. Donor Chains <ul><li>Very time intensive, high work load for low yield </li></ul><ul><li>Only about 120 done to date </li></ul><ul><li>Potential for 1,000 -2,000 additional kidney transplants per year </li></ul><ul><li>If there is a delay in donation, donor may back out </li></ul>
    40. 45. In short, there are new options <ul><li>“ Standard” living donor transplant </li></ul><ul><li>Highly-sensitized </li></ul><ul><li>Blood-type incompatible </li></ul><ul><li>Paired or triple exchange </li></ul><ul><li>Donor exchange “chains” </li></ul>
    41. 46. Conclusion <ul><li>Timely referral to transplant center </li></ul><ul><li>Communication and collaboration between the referring physician, patient, dialysis unit and the transplant team are the key </li></ul><ul><li>Advances in living donation are providing patients with more opportunities for transplant </li></ul>
    42. 47. Question to Run on? <ul><li>What can you do to educate your patients or community on the Journey to Transplant? </li></ul><ul><li>3 minutes to work at your tables and report back, Go! </li></ul>
    43. 48. Transition to Breakout Session #2 <ul><li>Next Breakout Session starts at 11:30 </li></ul><ul><li>Please see your agenda for specific room locations </li></ul><ul><li>Enjoy the Learning! </li></ul>
    44. 49. Journey to Transplant: How Patients Facing Organ Failure Get on the Transplant Waiting List Christine Lee, RN, BSN, CCTC Leeanne Shinn, RN UCLA Kidney and Pancreas Transplant Program
    45. 50. “How To Be” <ul><li>Being in Action! </li></ul><ul><li>The Answers Are In the Room </li></ul><ul><li>“ Report out” on Questions to Run-on: </li></ul><ul><ul><li>Scribe </li></ul></ul><ul><ul><li>Spokesperson </li></ul></ul><ul><li>All Teach / All Learn </li></ul>
    46. 51. Question to Run on? <ul><li>What can you do to educate your patients or community on the Journey to Transplant? </li></ul>
    47. 52. Introductions <ul><li>Christine Lee </li></ul><ul><li>Leeanne Shinn </li></ul>
    48. 53. Objectives <ul><li>Understand the referral, evaluation and listing process for organ transplant – kidney transplantation </li></ul><ul><li>Provide overview of the national wait list and review various deceased donor options </li></ul><ul><li>Discuss living donor transplant options </li></ul>
    49. 54. Treatment Options <ul><ul><li>Heart/Lung/Liver failure: Organ transplant </li></ul></ul><ul><ul><ul><li>Heart - LVAD as bridge to transplant </li></ul></ul></ul><ul><ul><li>End stage renal disease (ESRD): </li></ul></ul><ul><ul><ul><li>Dialysis </li></ul></ul></ul><ul><ul><ul><li>Kidney Transplant </li></ul></ul></ul><ul><ul><li>Type 1 diabetes: </li></ul></ul><ul><ul><ul><li>Insulin therapy </li></ul></ul></ul><ul><ul><ul><li>Pancreas alone (PA), kidney/pancreas transplant (SPK) </li></ul></ul></ul>
    50. 55. What is the goal of kidney transplant? <ul><li>Freedom from dialysis </li></ul><ul><li>Better quality of life </li></ul><ul><li>Prolongs life compared to dialysis </li></ul><ul><li>To maximize survival </li></ul>
    51. 56. <ul><li>Fig. 1. Overall unadjusted actuarial survival probabilities for transplanted recipients and haemodialysis patients </li></ul><ul><li>Mazzuchi, N. et al. Nephrol. Dial. Transplant. 1999 14:2849-2854; doi:10.1093/ndt/14.12.2849 </li></ul>
    52. 57. Kidney Transplant <ul><li>Cons: </li></ul><ul><ul><li>Not for everyone: compliance, health </li></ul></ul><ul><ul><li>Long wait time due to organ shortage </li></ul></ul><ul><ul><li>Require strict adherence to daily medications </li></ul></ul><ul><ul><li>Transplant medications for life </li></ul></ul>
    53. 58. Referral Process <ul><li>For kidney transplant - Referral made by physician, dialysis social worker, insurance case manager or patient </li></ul><ul><li>Find a local transplant program </li></ul><ul><li>Necessary documents: </li></ul><ul><ul><li>H&P, Social worker note, most recent lab, cardiac tests, imaging studies, ABO </li></ul></ul><ul><ul><li>Medicare Entitlement Form (2728 form) </li></ul></ul><ul><li>Schedule an appointment with the transplant team for evaluation </li></ul>
    54. 59. Selecting a Transplant Program <ul><li>The experience of the transplant team </li></ul><ul><li>Insurance coverage </li></ul><ul><li>Geographical proximity to the program </li></ul><ul><ul><li>The travel time to the transplant center is important when patient is waiting for an organ and is a key factor considered in organ distribution. </li></ul></ul><ul><li>The quality and availability of pre- and post-transplant services. </li></ul><ul><li>Availability of friends and family for assistance </li></ul>
    55. 60. Evaluation Process <ul><li>Patient Education Orientation </li></ul><ul><li>Consultation with the transplant team </li></ul><ul><ul><li>Transplant Physician </li></ul></ul><ul><ul><li>Surgeon </li></ul></ul><ul><ul><li>Transplant Nurse Coordinator </li></ul></ul><ul><ul><li>Social Worker </li></ul></ul><ul><ul><li>Dietician </li></ul></ul>
    56. 62. Evaluation Process <ul><li>Other consultation as needed </li></ul><ul><ul><li>Cardiology, Hepatology, Infectious Disease, Psychiatry, Hematology, Dermatology, Oncology, etc </li></ul></ul><ul><li>Pending tests </li></ul><ul><ul><li>Lab: Blood type x2, HLA, PRA, serology </li></ul></ul><ul><ul><li>Cardiac tests: EKG, Stress test, Echocardiogram, Coronary angiogram </li></ul></ul><ul><ul><li>Radiology: CXR, renal/abdominal ultrasound, CT scan, MRI </li></ul></ul><ul><ul><li>Screening tests: PSA, pap smear, mammogram, colonoscopy </li></ul></ul>
    57. 63. Patient Selection Criteria <ul><li>Must be accepted as a candidate before listing </li></ul><ul><li>Selection Criteria </li></ul><ul><ul><li>In general, all end-stage renal failure patients who, after having been informed of the risks of the transplant surgery and the inevitable chronic immunosuppressive therapy, still express a clear desire for this modality of treatment, will be accepted as candidates for evaluation. </li></ul></ul><ul><li>Exclusion criteria </li></ul><ul><ul><li>Presence of disseminated or recent malignancy </li></ul></ul><ul><ul><li>Active infection </li></ul></ul><ul><ul><li>Severe coronary artery disease and/or peripheral vascular disease </li></ul></ul><ul><ul><li>Underlying disease states such as multiple myeloma, scleroderma, oxalosis, sickle-cell anemia </li></ul></ul><ul><ul><li>Serious psychosocial problems </li></ul></ul><ul><ul><li>Squamous cell skin cancer </li></ul></ul><ul><ul><li>Renal cell carcinomas </li></ul></ul><ul><ul><li>BMI > 35 </li></ul></ul><ul><ul><li>Partial insurance coverage </li></ul></ul><ul><ul><li>Patients that are wheelchair bound, require oxygen, or are severely disabled </li></ul></ul><ul><ul><li>Patients who are unwilling to accept blood transfusions under any circumstances while taking anticoagulations </li></ul></ul>
    58. 64. Patient Selection Criteria <ul><li>After completion of the workup, Selection Committee will review the case </li></ul><ul><li>The Committee is made up of Transplant Nephrologists, Surgeons, Nurse Coordinators, Social workers, dietician, pharmacist and other consultants </li></ul><ul><li>Once decision is made, the patient and physician will be notified in writing </li></ul>
    59. 65. Listing Process <ul><li>Medical clearance by the Selection Committee </li></ul><ul><li>Financial clearance </li></ul><ul><li>Eligibility for wait time accrual </li></ul><ul><ul><li>On maintenance dialysis </li></ul></ul><ul><ul><li>GFR 20 or less </li></ul></ul><ul><li>Notification within 10 days to the patient, physician and dialysis social worker </li></ul>
    60. 66. UNOS Wait List <ul><li>National Wait List - United Network for Organ Sharing (UNOS) </li></ul><ul><li>107,337 patients are waiting for all organs </li></ul><ul><li>84,000+ patients are waiting for kidney transplant </li></ul>
    61. 67. U.S. Waiting List Candidates by Organs <ul><li>Based on current OPTN data as reported on May 7, 2010. Data subject to change based on future data submission or correction. </li></ul>
    62. 68. UNOS Wait List <ul><li>About 16,000 transplants per year </li></ul><ul><ul><li>6,000 living donor transplant (doubled over 15 yrs) </li></ul></ul><ul><ul><li>10,000 deceased donor </li></ul></ul><ul><li>California Wait List </li></ul><ul><ul><li>16,250+ patients are waiting for kidney </li></ul></ul><ul><ul><li>Average wait time: 7 to 10 years </li></ul></ul>
    63. 71. Allocation Strategies <ul><li>Dialysis Wait Time: </li></ul><ul><ul><li>wait time starts as initial dialysis start date </li></ul></ul><ul><li>Dual organ transplant </li></ul><ul><ul><li>kidney/pancreas </li></ul></ul><ul><ul><li>Liver/Kidney </li></ul></ul><ul><ul><li>Heart/Kidney </li></ul></ul><ul><li>Multiple listing </li></ul>
    64. 72. Is there a way to reduce the waiting time? <ul><li>Expanded Criteria Donor (ECD) kidney </li></ul><ul><ul><li>A kidney from a donor age over 60 years or over age 50 with a history of HTN, cause of death due to CVA, or a terminal creatinine greater than 1.5 mg/d </li></ul></ul><ul><li>Hepatitis C list </li></ul><ul><ul><li>Only for the patients with hepatitis C </li></ul></ul><ul><li>Donation after cardiac death (DCD) </li></ul><ul><ul><li>A kidney from a donor who was declared dead based on a lack of a heartbeat. </li></ul></ul><ul><ul><li>These kidneys are less likely to function immediately & may have a greater risk of rejection </li></ul></ul><ul><li>The Centers for Disease Control (CDC) increased risk </li></ul><ul><ul><li>Higher risk for the transmission of viral disease including HIV & Hepatitis </li></ul></ul><ul><li>Donation Point </li></ul><ul><li>Living Donor Transplant </li></ul>
    65. 73. Living Donor Transplant Options <ul><li>Compatible Recipient-Donor pairs </li></ul><ul><li>Desensitization Protocols </li></ul><ul><li>Blood Type incompatible </li></ul><ul><li>Kidney Exchange Program </li></ul><ul><ul><li>AKA Paired Exchange or Chain Transplant </li></ul></ul>
    66. 75. Living Donation <ul><li>Related vs. Unrelated </li></ul><ul><li>Requirements </li></ul><ul><ul><li>Age 18 ~ 65 </li></ul></ul><ul><ul><li>Health Concerns (diabetes, high blood pressure, cancer, hepatitis, weight issue) </li></ul></ul><ul><ul><li>Lifestyle: substance abuse </li></ul></ul>
    67. 76. Blood type compatibility chart Candidate’s Blood Type O A B AB Donor’s Blood Type O A or O B or O A, B, AB or O
    68. 77. Compatible Recip-Donor Pairs <ul><li>Blood types are compatible </li></ul><ul><li>Cross match testing indicates low risk of early rejection </li></ul><ul><li>Donor can donate directly to recipient </li></ul>
    69. 78. But… <ul><li>What if the donor and the recipient </li></ul><ul><li>are not compatible? </li></ul>
    70. 79. <ul><ul><li>At least one third of patients with a willing living donor are excluded due to incompatible blood type and positive cross match </li></ul></ul><ul><li>35% of any two people will be blood type incompatible </li></ul><ul><li>30 % of patients needing a kidney transplant will be sensitized because of previous transplants, pregnancies or transfusions </li></ul>
    71. 80. Desensitization <ul><li>Advantages include increasing the donor pool and the friend or love one can donate to the intended recipient </li></ul><ul><li>Disadvantages include cost which averages approximately $30,000 </li></ul><ul><li>Decreased patient survival (5yr 87% vs. 94%) AJT 2004 </li></ul><ul><li>Unpredictable rates of accelerated rejection </li></ul><ul><li>Decreased graft survival (1yr. 84% vs. 96% ) AJT 2004 </li></ul><ul><li>Decreased 5 yr. graft survival (69% vs. 81%) AJT 2009 </li></ul>
    72. 81. Blood Type Incompatible <ul><li>Living donor has different blood type </li></ul><ul><li>No other donor available </li></ul><ul><li>Requires analysis of antibody levels </li></ul><ul><li>Insurance authorization for treatment </li></ul><ul><li>Pre-operative treatment protocol over several weeks to achieve safe window for transplantation with your living donor </li></ul>
    73. 82. ABOi <ul><li>Molecules present or absent on blood cells determine blood type </li></ul><ul><li>When blood types are mixed, these molecules act as antigens that trigger ABO incompatibility reaction </li></ul><ul><li>Preconditioning is done to cleanse the blood of these circulating antibodies and depends on blood type and amount of antibodies present </li></ul>
    74. 83. ABOi Therapies <ul><li>Plasmapheresis- remove antibodies </li></ul><ul><li>Immunoglobulin-decrease antibodies which are destructive to the graft </li></ul><ul><li>Splenectomy </li></ul><ul><li>Anti-CD20 Antibody (rituximab)- depletes CD20 protein which is found on the wall of most B cells </li></ul>
    75. 84. Paired Donation <ul><li>Initially slow to take off because 1984 NOTA “unlawful to acquire organ in exchange for valuable consideration” </li></ul><ul><li>2007 Senate bill “valuable consideration does not apply to paired donation” </li></ul>
    76. 85. Donor Exchange <ul><li>Recipient/donor pair have incompatible blood types </li></ul><ul><li>Other donor/recipient pair have incompatible blood types </li></ul><ul><li>Donors evaluated/accepted for donation </li></ul><ul><li>Donor/recipient pairs “exchange” donor kidneys </li></ul><ul><li>Exchange is anonymous until after surgery </li></ul>
    77. 86. Paired donor exchange <ul><li>Pair #1 </li></ul><ul><li>Recip blood type = A </li></ul><ul><li>Donor blood type = B </li></ul><ul><li>B to A is not compatible </li></ul><ul><li>Pair #2 </li></ul><ul><li>Recip blood type = B </li></ul><ul><li>Donor blood type = A </li></ul><ul><li>A to B is not compatible </li></ul>
    78. 87. Paired Donor Exchange <ul><li>Pair #1 Pair #2 </li></ul><ul><li>Recipient = A Recipient = B </li></ul><ul><li>Donor = B Donor = A </li></ul><ul><li>Blood-type incompatible Recip/Donor pairs </li></ul><ul><li>exchange blood-type compatible kidneys </li></ul>
    79. 88. Down Side of Paired Donation <ul><li>If one living donor backs out then the other pair is disadvantaged </li></ul><ul><li>Requires simultaneous O.R. start </li></ul>
    80. 89. Donor Exchange “Chains” <ul><li>Participation of multiple pairs of donors and recipients </li></ul><ul><li>Usually started by a non-directed or “altruistic” </li></ul><ul><li>One donor is “left over” to begin a new section of the chain </li></ul>
    81. 90. Donor Chains <ul><li>Living donor can donate local to where they live </li></ul><ul><li>Kidneys are shipped using established OPO protocols on commercial flights </li></ul><ul><li>Do not need simultaneous O.R. start times </li></ul>
    82. 92. Donor Chains <ul><li>Very time intensive, high work load for low yield </li></ul><ul><li>Only about 120 done to date </li></ul><ul><li>Potential for 1,000 -2,000 additional kidney transplants per year </li></ul><ul><li>If there is a delay in donation, donor may back out </li></ul>
    83. 93. In short, there are new options <ul><li>“ Standard” living donor transplant </li></ul><ul><li>Highly-sensitized </li></ul><ul><li>Blood-type incompatible </li></ul><ul><li>Paired or triple exchange </li></ul><ul><li>Donor exchange “chains” </li></ul>
    84. 94. Conclusion <ul><li>Timely referral to transplant center </li></ul><ul><li>Communication and collaboration between the referring physician, patient, dialysis unit and the transplant team are the key </li></ul><ul><li>Advances in living donation are providing patients with more opportunities for transplant </li></ul>
    85. 95. Question to Run on? <ul><li>What can you do to educate your patients or community on the Journey to Transplant? </li></ul><ul><li>3 minutes to work at your tables and report back, Go! </li></ul>
    86. 96. Transition to Lunch <ul><li>Lunch is from 12:30 – 1:30 </li></ul><ul><li>In the Crystal Ballroom, on the main level of the hotel </li></ul><ul><li>Open seating </li></ul><ul><li>Bon Appétit! </li></ul>
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