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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
“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
Question to Run on?

What can you do to educate your
patients or community on the Journey to
Transplant?
Introductions

Christine Lee

Leeanne Shinn
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

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)
What is the goal of kidney transplant?
Freedom from dialysis
 Better quality of life
 Prolongs life compared to dialysis
 To maximize survival



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
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
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
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 posttransplant services.
 Availability of friends and family for
assistance
Evaluation Process
Patient Education Orientation
 Consultation with the transplant team

– Transplant Physician
– Surgeon
– Transplant Nurse Coordinator
– Social Worker
– Dietician
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
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
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
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
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

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.
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
Allocation Strategies

Dialysis Wait Time:
– wait time starts as initial dialysis start date

Dual organ transplant
– kidney/pancreas
– Liver/Kidney
– Heart/Kidney

Multiple listing
Is there a way to reduce the
waiting time?

Expanded Criteria Donor (ECD) kidney
–

Hepatitis C list
–

Only for the patients with hepatitis C
Donation after cardiac death (DCD)
–
–

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
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
Living Donor Transplant
Options
Compatible Recipient-Donor pairs
 Desensitization Protocols
 Blood Type incompatible
 Kidney Exchange Program

– AKA Paired Exchange or Chain
Transplant
Algorithm of UCLA Renal Failure Patients Awaiting Transplantation
ESRD Patient
Living Donor
No
Yes
(Patient remains on deceased donor list)
Blood Type
Incompatible
Compatible
Deceased Donor
Waiting List
Crossmatch
-
Standard Criteria
Waiting List
Evaluate Anti-A/B Titers
+
Patient Preference
High
Low
HCV+
HCV + List
>50
Investigate
Other Donors
Donor
Workup
ECD List
+
+
Transplant
Transplant Transplant
-
Crossmatch Paired Exchange
Program
Desensitization
Protocol
ABOi
Protocol
Single dose
Transplant
Low titer but donor pt
interested in paired
exchange
MCS
Crossmatch
-
Altruistic
Donor
Transplant
Crossmatch
Multi-dose
Transplant
If de
s
ensit
izatio
n
Transplant Transplant
Transplant
fails
G. Lipshutz 3/2008
Living Donation
Related vs. Unrelated
 Requirements
– Age 18 ~ 65
– Health Concerns (diabetes, high
blood pressure, cancer, hepatitis,
weight issue)
– Lifestyle: substance abuse

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
Blood types are compatible
 Cross match testing indicates low risk of
early rejection
 Donor can donate directly to recipient

But…
What if the donor and the recipient
are not compatible?
•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
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
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
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
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

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”
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
Paired donor exchange

Pair #1

Pair #2
Recip blood type = A
Donor blood type = B
Recip blood type = B
Donor blood type = A
B to A is not
compatible
A to B is not
compatible
Paired Donor Exchange
Pair #1
Recipient = A
Donor
=B
Pair #2
Recipient = B
Donor
=A
Blood-type incompatible Recip/Donor pairs
exchange blood-type compatible kidneys
Down Side of Paired Donation
If one living donor backs out then the
other pair is disadvantaged
 Requires simultaneous O.R. start

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

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

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

In short, there are new options
“Standard” living donor transplant
 Highly-sensitized
 Blood-type incompatible
 Paired or triple exchange
 Donor exchange “chains”

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
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!
Transition to
Breakout Session #2
Next Breakout Session starts at 11:30
Please see your agenda for specific room
locations
Enjoy the Learning!
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
“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
Question to Run on?

What can you do to educate your
patients or community on the Journey to
Transplant?
Introductions

Christine Lee

Leeanne Shinn
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

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)
What is the goal of kidney transplant?
Freedom from dialysis
 Better quality of life
 Prolongs life compared to dialysis
 To maximize survival



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
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
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
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 posttransplant services.
 Availability of friends and family for
assistance
Evaluation Process
Patient Education Orientation
 Consultation with the transplant team

– Transplant Physician
– Surgeon
– Transplant Nurse Coordinator
– Social Worker
– Dietician
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
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
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
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
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

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.
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
Allocation Strategies

Dialysis Wait Time:
– wait time starts as initial dialysis start date

Dual organ transplant
– kidney/pancreas
– Liver/Kidney
– Heart/Kidney

Multiple listing
Is there a way to reduce the
waiting time?

Expanded Criteria Donor (ECD) kidney
–

Hepatitis C list
–

Only for the patients with hepatitis C
Donation after cardiac death (DCD)
–
–

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
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
Living Donor Transplant
Options
Compatible Recipient-Donor pairs
 Desensitization Protocols
 Blood Type incompatible
 Kidney Exchange Program

– AKA Paired Exchange or Chain
Transplant
Algorithm of UCLA Renal Failure Patients Awaiting Transplantation
ESRD Patient
Living Donor
No
Yes
(Patient remains on deceased donor list)
Blood Type
Incompatible
Compatible
Deceased Donor
Waiting List
Crossmatch
-
Standard Criteria
Waiting List
Evaluate Anti-A/B Titers
+
Patient Preference
High
Low
HCV+
HCV + List
>50
Investigate
Other Donors
Donor
Workup
ECD List
+
+
Transplant
Transplant Transplant
-
Crossmatch Paired Exchange
Program
Desensitization
Protocol
ABOi
Protocol
Single dose
Transplant
Low titer but donor pt
interested in paired
exchange
MCS
Crossmatch
-
Altruistic
Donor
Transplant
Crossmatch
Multi-dose
Transplant
If de
s
ensit
izatio
n
Transplant Transplant
Transplant
fails
G. Lipshutz 3/2008
Living Donation
Related vs. Unrelated
 Requirements
– Age 18 ~ 65
– Health Concerns (diabetes, high
blood pressure, cancer, hepatitis,
weight issue)
– Lifestyle: substance abuse

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
Blood types are compatible
 Cross match testing indicates low risk of
early rejection
 Donor can donate directly to recipient

But…
What if the donor and the recipient
are not compatible?
•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
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
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
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
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

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”
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
Paired donor exchange

Pair #1

Pair #2
Recip blood type = A
Donor blood type = B
Recip blood type = B
Donor blood type = A
B to A is not
compatible
A to B is not
compatible
Paired Donor Exchange
Pair #1
Recipient = A
Donor
=B
Pair #2
Recipient = B
Donor
=A
Blood-type incompatible Recip/Donor pairs
exchange blood-type compatible kidneys
Down Side of Paired Donation
If one living donor backs out then the
other pair is disadvantaged
 Requires simultaneous O.R. start

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

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

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

In short, there are new options
“Standard” living donor transplant
 Highly-sensitized
 Blood-type incompatible
 Paired or triple exchange
 Donor exchange “chains”

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
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!
Transition to Lunch
Lunch is from 12:30 – 1:30
In the Crystal Ballroom, on the main level
of the hotel
Open seating
Bon Appétit!