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 Slide 2 How
To Be Being in Action! The Answers Are In the Room Report out on
Questions to Run-on: Scribe Spokesperson All Teach / All Learn
Slide 3 Question to Run on? What can you do to educate your
patients or community on the Journey to Transplant? Slide 4
Introductions Christine Lee Leeanne Shinn Slide 5 Objectives
Understand the referral, evaluation and listing process for organ
transplant kidney transplantation Provide overview of the national
wait list and review various deceased donor options Discuss living
donor transplant options Slide 6 Treatment Options Heart/Lung/Liver
failure: Organ transplant Heart - LVAD as bridge to transplant End
stage renal disease (ESRD): Dialysis Kidney Transplant Type 1
diabetes: Insulin therapy Pancreas alone (PA), kidney/pancreas
transplant (SPK) Slide 7 What is the goal of kidney transplant?
Freedom from dialysis Better quality of life Prolongs life compared
to dialysis To maximize survival Slide 8 Fig. 1. Overall unadjusted
actuarial survival probabilities for transplanted recipients and
haemodialysis patients Mazzuchi, N. et al. Nephrol. Dial.
Transplant. 1999 14:2849-2854; doi:10.1093/ndt/14.12.2849 Slide 9
Kidney Transplant Cons: Not for everyone: compliance, health Long
wait time due to organ shortage Require strict adherence to daily
medications Transplant medications for life Slide 10 Referral
Process For kidney transplant - Referral made by physician,
dialysis social worker, insurance case manager or patient Find a
local transplant program Necessary documents: H&P, Social
worker note, most recent lab, cardiac tests, imaging studies, ABO
Medicare Entitlement Form (2728 form) Schedule an appointment with
the transplant team for evaluation Slide 11 Selecting a Transplant
Program The experience of the transplant team Insurance coverage
Geographical proximity to the program 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. The quality
and availability of pre- and post- transplant services.
Availability of friends and family for assistance Slide 12
Evaluation Process Patient Education Orientation Consultation with
the transplant team Transplant Physician Surgeon Transplant Nurse
Coordinator Social Worker Dietician Slide 13 Slide 14 Evaluation
Process Other consultation as needed Cardiology, Hepatology,
Infectious Disease, Psychiatry, Hematology, Dermatology, Oncology,
etc Pending tests Lab: Blood type x2, HLA, PRA, serology Cardiac
tests: EKG, Stress test, Echocardiogram, Coronary angiogram
Radiology: CXR, renal/abdominal ultrasound, CT scan, MRI Screening
tests: PSA, pap smear, mammogram, colonoscopy Slide 15 Patient
Selection Criteria Must be accepted as a candidate before listing
Selection Criteria 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. Exclusion criteria Presence
of disseminated or recent malignancy Active infection Severe
coronary artery disease and/or peripheral vascular disease
Underlying disease states such as multiple myeloma, scleroderma,
oxalosis, sickle-cell anemia Serious psychosocial problems Squamous
cell skin cancer Renal cell carcinomas BMI > 35 Partial
insurance coverage Patients that are wheelchair bound, require
oxygen, or are severely disabled Patients who are unwilling to
accept blood transfusions under any circumstances while taking
anticoagulations Slide 16 Patient Selection Criteria After
completion of the workup, Selection Committee will review the case
The Committee is made up of Transplant Nephrologists, Surgeons,
Nurse Coordinators, Social workers, dietician, pharmacist and other
consultants Once decision is made, the patient and physician will
be notified in writing Slide 17 Listing Process Medical clearance
by the Selection Committee Financial clearance Eligibility for wait
time accrual On maintenance dialysis GFR 20 or less Notification
within 10 days to the patient, physician and dialysis social worker
Slide 18 UNOS Wait List National Wait List - United Network for
Organ Sharing (UNOS) 107,337 patients are waiting for all organs
84,000+ patients are waiting for kidney transplant Slide 19 U.S.
Waiting List Candidates by Organs Based on current OPTN data as
reported on May 7, 2010. Data subject to change based on future
data submission or correction. Slide 20 UNOS Wait List About 16,000
transplants per year 6,000 living donor transplant (doubled over 15
yrs) 10,000 deceased donor California Wait List 16,250+ patients
are waiting for kidney Average wait time: 7 to 10 years Slide 21
Slide 22 Slide 23 Allocation Strategies Allocation Strategies
Dialysis Wait Time: wait time starts as initial dialysis start date
Dual organ transplant kidney/pancreas Liver/Kidney Heart/Kidney
Multiple listing Slide 24 Is there a way to reduce the waiting
time? Expanded Criteria Donor (ECD) kidney 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
Hepatitis C list Only for the patients with hepatitis C Donation
after cardiac death (DCD) A kidney from a donor who was declared
dead based on a lack of a heartbeat. These kidneys are less likely
to function immediately & may have a greater risk of rejection
The Centers for Disease Control (CDC) increased risk Higher risk
for the transmission of viral disease including HIV & Hepatitis
Donation Point Living Donor Transplant Slide 25 Living Donor
Transplant Options Compatible Recipient-Donor pairs Desensitization
Protocols Blood Type incompatible Kidney Exchange Program AKA
Paired Exchange or Chain Transplant Slide 26 Slide 27 Living
Donation Related vs. Unrelated Requirements Age 18 ~ 65 Health
Concerns (diabetes, high blood pressure, cancer, hepatitis, weight
issue) Lifestyle: substance abuse Slide 28 Blood type compatibility
chart Candidates Blood Type O A B AB Donors Blood Type O A or O B
or O A, B, AB or O Slide 29 Compatible Recip-Donor Pairs Blood
types are compatible Cross match testing indicates low risk of
early rejection Donor can donate directly to recipient Slide 30 But
What if the donor and the recipient are not compatible? Slide 31 At
least one third of patients with a willing living donor are
excluded due to incompatible blood type and positive cross match
35% of any two people will be blood type incompatible 30 % of
patients needing a kidney transplant will be sensitized because of
previous transplants, pregnancies or transfusions Slide 32
Desensitization Advantages include increasing the donor pool and
the friend or love one can donate to the intended recipient
Disadvantages include cost which averages approximately $30,000
Decreased patient survival (5yr 87% vs. 94%) AJT 2004 Unpredictable
rates of accelerated rejection Decreased graft survival (1yr. 84%
vs. 96% ) AJT 2004 Decreased 5 yr. graft survival (69% vs. 81%) AJT
2009 Slide 33 Blood Type Incompatible Living donor has different
blood type No other donor available Requires analysis of antibody
levels Insurance authorization for treatment Pre-operative
treatment protocol over several weeks to achieve safe window for
transplantation with your living donor Slide 34 ABOi Molecules
present or absent on blood cells determine blood type When blood
types are mixed, these molecules act as antigens that trigger ABO
incompatibility reaction Preconditioning is done to cleanse the
blood of these circulating antibodies and depends on blood type and
amount of antibodies present Slide 35 ABOi Therapies
Plasmapheresis- remove antibodies Immunoglobulin-decrease
antibodies which are destructive to the graft Splenectomy Anti-CD20
Antibody (rituximab)- depletes CD20 protein which is found on the
wall of most B cells Slide 36 Paired Donation Initially slow to
take off because 1984 NOTA unlawful to acquire organ in exchange
for valuable consideration 2007 Senate bill valuable consideration
does not apply to paired donation Slide 37 Donor Exchange
Recipient/donor pair have incompatible blood types Other
donor/recipient pair have incompatible blood types Donors
evaluated/accepted for donation Donor/recipient pairs exchange
donor kidneys Exchange is anonymous until after surgery Slide 38
Paired donor exchange Pair #1 Recip blood type = A Donor blood type
= B B to A is not compatible Pair #2 Recip blood type = B Donor
blood type = A A to B is not compatible Slide 39 Paired Donor
Exchange Pair #1 Pair #2 Recipient = A Recipient = B Donor = B
Donor = A Blood-type incompatible Recip/Donor pairs exchange
blood-type compatible kidneys Slide 40 Down Side of Paired Donation
If one living donor backs out then the other pair is disadvantaged
Requires simultaneous O.R. start Slide 41 Donor Exchange Chains
Participation of multiple pairs of donors and recipients Usually
started by a non-directed or altruistic One donor is left over to
begin a new section of the chain Slide 42 Donor Chains Living donor
can donate local to where they live Kidneys are shipped using
established OPO protocols on commercial flights Do not need
simultaneous O.R. start times Slide 43 Slide 44 Donor Chains Very
time intensive, high work load for low yield Only about 120 done to
date Potential for 1,000 -2,000 additional kidney transplants per
year If there is a delay in donation, donor may back out Slide 45
In short, there are new options Standard living donor transplant
Highly-sensitized Blood-type incompatible Paired or triple exchange
Donor exchange chains Slide 46 Conclusion Timely referral to
transplant center Communication and collaboration between the
referring physician, patient, dialysis unit and the transplant team
are the key Advances in living donation are providing patients with
more opportunities for transplant Slide 47 Question to Run on? What
can you do to educate your patients or community on the Journey to
Transplant? 3 minutes to work at your tables and report back, Go!
Slide 48 Transition to Breakout Session #2 Next Breakout Session
starts at 11:30 Please see your agenda for specific room locations
Enjoy the Learning! Slide 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 Slide 50 How To Be Being in Action! The Answers
Are In the Room Report out on Questions to Run-on: Scribe
Spokesperson All Teach / All Learn Slide 51 Question to Run on?
What can you do to educate your patients or community on the
Journey to Transplant? Slide 52 Introductions Christine Lee Leeanne
Shinn Slide 53 Objectives Understand the referral, evaluation and
listing process for organ transplant kidney transplantation Provide
overview of the national wait list and review various deceased
donor options Discuss living donor transplant options Slide 54
Treatment Options Heart/Lung/Liver failure: Organ transplant Heart
- LVAD as bridge to transplant End stage renal disease (ESRD):
Dialysis Kidney Transplant Type 1 diabetes: Insulin therapy
Pancreas alone (PA), kidney/pancreas transplant (SPK) Slide 55 What
is the goal of kidney transplant? Freedom from dialysis Better
quality of life Prolongs life compared to dialysis To maximize
survival Slide 56 Fig. 1. Overall unadjusted actuarial survival
probabilities for transplanted recipients and haemodialysis
patients Mazzuchi, N. et al. Nephrol. Dial. Transplant. 1999
14:2849-2854; doi:10.1093/ndt/14.12.2849 Slide 57 Kidney Transplant
Cons: Not for everyone: compliance, health Long wait time due to
organ shortage Require strict adherence to daily medications
Transplant medications for life Slide 58 Referral Process For
kidney transplant - Referral made by physician, dialysis social
worker, insurance case manager or patient Find a local transplant
program Necessary documents: H&P, Social worker note, most
recent lab, cardiac tests, imaging studies, ABO Medicare
Entitlement Form (2728 form) Schedule an appointment with the
transplant team for evaluation Slide 59 Selecting a Transplant
Program The experience of the transplant team Insurance coverage
Geographical proximity to the program 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. The quality
and availability of pre- and post- transplant services.
Availability of friends and family for assistance Slide 60
Evaluation Process Patient Education Orientation Consultation with
the transplant team Transplant Physician Surgeon Transplant Nurse
Coordinator Social Worker Dietician Slide 61 Slide 62 Evaluation
Process Other consultation as needed Cardiology, Hepatology,
Infectious Disease, Psychiatry, Hematology, Dermatology, Oncology,
etc Pending tests Lab: Blood type x2, HLA, PRA, serology Cardiac
tests: EKG, Stress test, Echocardiogram, Coronary angiogram
Radiology: CXR, renal/abdominal ultrasound, CT scan, MRI Screening
tests: PSA, pap smear, mammogram, colonoscopy Slide 63 Patient
Selection Criteria Must be accepted as a candidate before listing
Selection Criteria 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. Exclusion criteria Presence
of disseminated or recent malignancy Active infection Severe
coronary artery disease and/or peripheral vascular disease
Underlying disease states such as multiple myeloma, scleroderma,
oxalosis, sickle-cell anemia Serious psychosocial problems Squamous
cell skin cancer Renal cell carcinomas BMI > 35 Partial
insurance coverage Patients that are wheelchair bound, require
oxygen, or are severely disabled Patients who are unwilling to
accept blood transfusions under any circumstances while taking
anticoagulations Slide 64 Patient Selection Criteria After
completion of the workup, Selection Committee will review the case
The Committee is made up of Transplant Nephrologists, Surgeons,
Nurse Coordinators, Social workers, dietician, pharmacist and other
consultants Once decision is made, the patient and physician will
be notified in writing Slide 65 Listing Process Medical clearance
by the Selection Committee Financial clearance Eligibility for wait
time accrual On maintenance dialysis GFR 20 or less Notification
within 10 days to the patient, physician and dialysis social worker
Slide 66 UNOS Wait List National Wait List - United Network for
Organ Sharing (UNOS) 107,337 patients are waiting for all organs
84,000+ patients are waiting for kidney transplant Slide 67 U.S.
Waiting List Candidates by Organs Based on current OPTN data as
reported on May 7, 2010. Data subject to change based on future
data submission or correction. Slide 68 UNOS Wait List About 16,000
transplants per year 6,000 living donor transplant (doubled over 15
yrs) 10,000 deceased donor California Wait List 16,250+ patients
are waiting for kidney Average wait time: 7 to 10 years Slide 69
Slide 70 Slide 71 Allocation Strategies Allocation Strategies
Dialysis Wait Time: wait time starts as initial dialysis start date
Dual organ transplant kidney/pancreas Liver/Kidney Heart/Kidney
Multiple listing Slide 72 Is there a way to reduce the waiting
time? Expanded Criteria Donor (ECD) kidney 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
Hepatitis C list Only for the patients with hepatitis C Donation
after cardiac death (DCD) A kidney from a donor who was declared
dead based on a lack of a heartbeat. These kidneys are less likely
to function immediately & may have a greater risk of rejection
The Centers for Disease Control (CDC) increased risk Higher risk
for the transmission of viral disease including HIV & Hepatitis
Donation Point Living Donor Transplant Slide 73 Living Donor
Transplant Options Compatible Recipient-Donor pairs Desensitization
Protocols Blood Type incompatible Kidney Exchange Program AKA
Paired Exchange or Chain Transplant Slide 74 Slide 75 Living
Donation Related vs. Unrelated Requirements Age 18 ~ 65 Health
Concerns (diabetes, high blood pressure, cancer, hepatitis, weight
issue) Lifestyle: substance abuse Slide 76 Blood type compatibility
chart Candidates Blood Type O A B AB Donors Blood Type O A or O B
or O A, B, AB or O Slide 77 Compatible Recip-Donor Pairs Blood
types are compatible Cross match testing indicates low risk of
early rejection Donor can donate directly to recipient Slide 78 But
What if the donor and the recipient are not compatible? Slide 79 At
least one third of patients with a willing living donor are
excluded due to incompatible blood type and positive cross match
35% of any two people will be blood type incompatible 30 % of
patients needing a kidney transplant will be sensitized because of
previous transplants, pregnancies or transfusions Slide 80
Desensitization Advantages include increasing the donor pool and
the friend or love one can donate to the intended recipient
Disadvantages include cost which averages approximately $30,000
Decreased patient survival (5yr 87% vs. 94%) AJT 2004 Unpredictable
rates of accelerated rejection Decreased graft survival (1yr. 84%
vs. 96% ) AJT 2004 Decreased 5 yr. graft survival (69% vs. 81%) AJT
2009 Slide 81 Blood Type Incompatible Living donor has different
blood type No other donor available Requires analysis of antibody
levels Insurance authorization for treatment Pre-operative
treatment protocol over several weeks to achieve safe window for
transplantation with your living donor Slide 82 ABOi Molecules
present or absent on blood cells determine blood type When blood
types are mixed, these molecules act as antigens that trigger ABO
incompatibility reaction Preconditioning is done to cleanse the
blood of these circulating antibodies and depends on blood type and
amount of antibodies present Slide 83 ABOi Therapies
Plasmapheresis- remove antibodies Immunoglobulin-decrease
antibodies which are destructive to the graft Splenectomy Anti-CD20
Antibody (rituximab)- depletes CD20 protein which is found on the
wall of most B cells Slide 84 Paired Donation Initially slow to
take off because 1984 NOTA unlawful to acquire organ in exchange
for valuable consideration 2007 Senate bill valuable consideration
does not apply to paired donation Slide 85 Donor Exchange
Recipient/donor pair have incompatible blood types Other
donor/recipient pair have incompatible blood types Donors
evaluated/accepted for donation Donor/recipient pairs exchange
donor kidneys Exchange is anonymous until after surgery Slide 86
Paired donor exchange Pair #1 Recip blood type = A Donor blood type
= B B to A is not compatible Pair #2 Recip blood type = B Donor
blood type = A A to B is not compatible Slide 87 Paired Donor
Exchange Pair #1 Pair #2 Recipient = A Recipient = B Donor = B
Donor = A Blood-type incompatible Recip/Donor pairs exchange
blood-type compatible kidneys Slide 88 Down Side of Paired Donation
If one living donor backs out then the other pair is disadvantaged
Requires simultaneous O.R. start Slide 89 Donor Exchange Chains
Participation of multiple pairs of donors and recipients Usually
started by a non-directed or altruistic One donor is left over to
begin a new section of the chain Slide 90 Donor Chains Living donor
can donate local to where they live Kidneys are shipped using
established OPO protocols on commercial flights Do not need
simultaneous O.R. start times Slide 91 Slide 92 Donor Chains Very
time intensive, high work load for low yield Only about 120 done to
date Potential for 1,000 -2,000 additional kidney transplants per
year If there is a delay in donation, donor may back out Slide 93
In short, there are new options Standard living donor transplant
Highly-sensitized Blood-type incompatible Paired or triple exchange
Donor exchange chains Slide 94 Conclusion Timely referral to
transplant center Communication and collaboration between the
referring physician, patient, dialysis unit and the transplant team
are the key Advances in living donation are providing patients with
more opportunities for transplant Slide 95 Question to Run on? What
can you do to educate your patients or community on the Journey to
Transplant? 3 minutes to work at your tables and report back, Go!
Slide 96 Transition to Lunch Lunch is from 12:30 1:30 In the
Crystal Ballroom, on the main level of the hotel Open seating Bon
Apptit!
