Kidney and Pancreas Transplant Education - VoiceTube: Learn English through videos!

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>> Welcome to the Patient Education video for kidney and/or pancreas transplants.
You are here today to be evaluated for a kidney and/or pancreas transplant.
This video is designed to provide you with information about transplantation.
Today, we will review the facts you will need
to determine whether transplantation is right for you.
As we review this information, you may want to make notes
or jot down questions to ask your transplant team.
You will receive a patient education guide that explains transplantation in detail,
and will be a long-term reference guide for you through the phases of transplantation.
You can add information and contact numbers to this guide.
It is important to bring your patient education guide with you for every clinic visit
and when you are admitted to the hospital for your transplant.
Portions of this guide will be used during your inpatient stay to teach you
about medications and post-transplant care.
You are here today to be evaluated for a kidney transplant.
Let's take a closer look at what functions the kidneys perform.
The basic functions of the kidneys are to filter poisons
out of your blood and to regulate water balance.
Some of you may also be here to be evaluated for a pancreas transplant.
Let's take a closer look at the functions the pancreas performs.
The basic functions of the pancreas are to secrete digestive juices and to secrete insulin,
which assists in the regulation of blood sugar.
Pancreas transplants may be helpful for patients who have type 1 diabetes,
indicating their pancreas has lost its ability to make insulin
and won't ever be able to make insulin again.
There are three types of pancreas transplants -- simultaneous pancreas and kidney,
also known as SPK; pancreas after kidney transplant, or PAK; and pancreas alone,
referred to as a PA, or a pancreas transplant alone, a PTA, which is rare.
Very specific criteria determine when a pancreas transplant is appropriate.
If you have any questions regarding pancreas transplant,
discuss them with the doctors during your evaluation appointment.
Chronic kidney disease is the slow loss of kidney function over time.
Chronic kidney disease is also known as chronic kidney failure, or chronic renal insufficiency.
When your kidneys do not work correctly, wastes build up in your blood and they make you sick.
The most common causes of chronic kidney disease are high blood pressure
or high blood sugar, also known as diabetes.
Kidney failure is defined when kidney function falls below 15%.
When you are in kidney failure, you will have two treatment choices --
to start dialysis or have a kidney transplant.
Most patients experience an improved quality of life
with a transplantation compared to dialysis.
On average, the patients will live longer approximately twice as long
after having a transplant than if they had stayed on dialysis.
Some patients may be able to avoid dialysis
by having a living donor transplant before they need dialysis.
Some patients are not interested in pursuing either dialysis or transplant,
choosing not to pursue treatment for their kidney disease.
It is important to discuss this decision with a physician.
Donated organs can come from deceased donors and living donors.
Gift of Life is the organ procurement organization --
or OPO, that coordinates deceased donors in our area.
There are two ways donated organs are received from deceased donors.
The first is called "donation after brain death," or DBD,
and occurs when the family chooses to donate their loved ones organs
after a devastating brain injury from which their loved one is declared brain dead.
The other is called "donation after cardiac death," or DCD.
In this situation, the donor has suffered a devastating medical event
from which recovery is not possible.
With the family's approval, the patient is withdrawn from life support
and cardiac death will occur prior to organ donation.
If cardiac death does not occur within a designated time frame following withdrawal
from life support, organ recovery will not occur.
Donated organs may also come from living donors
who may be related or unrelated to the recipient.
Some living donors choose to remain anonymous.
All donors, deceased and living, are screened very carefully prior to donation.
When a donated organ is offered to the transplant center for you,
the coordinator contacting you will inform you of the information regarding the organ,
and you have a choice to accept or decline the offered organ.
Transplants using living donor kidneys last longer.
On average, living donor kidney transplants last for 15 years compared to an average of 10 years
for a kidney transplant from a deceased donor.
Living donor transplants can be done sooner than deceased donor transplants.
The time to a living donor transplant is from one to three months.
The time to a deceased donor transplant can be from four to seven years.
The sooner patients can be transplanted, the better their outcomes will be after transplant.
Living donation increases the likelihood that a transplant will occur.
Only about 50% of patients that are put on the wait list ever get a deceased donor transplant.
Many patients die before an organ becomes available,
or become too ill to allow them to be a viable candidate.
The risk of dying on the waiting list is approximately 8% every year.
Living donors need to have a blood type that is compatible with the intended recipient.
The positive or negative aspect of blood type does not matter in a crossmatch.
The donor and recipient's blood are crossmatched to ensure the recipient does not react
to the donor in a detrimental way.
Since everyone's blood antibodies change over time, crossmatches are done routinely
to ensure no detrimental reaction occurs.
Surgery can be planned in advance around the donor and recipient schedules.
Since obtaining an organ from a living donor may be your best opportunity,
you will be encouraged to pursue this option.
There are not a sufficient number of donated organs
to transplant all the patients who need a transplant.
Our paired kidney donation program offers new hope to patients needing a kidney transplant.
Often, a patient who needs a kidney has a family member or a friend willing to donate one of his
or her kidneys, but it cannot be done due to tissue or blood type incompatibilities.
Paired donations seeks to match individuals who do not have a compatible donor or recipient
with others in the same situation.
If you and your intended donor do not match by either blood type or crossmatch,
you may benefit from the paired donation program.
Altruistic donors come forward with an offer to donate an organ,
often without an intended recipient.
Altruistic donors receive no financial or other incentives to donate.
Their offer stem from a selfless regard for the welfare of another.
One donation can begin a chain of organ matches in the paired donation program
that may allow for many transplants to occur.
For example, one kidney is donated and transplant one is matched and transplanted
to recipient A. Recipient A had a donor who is not compatible but now transplant two,
matches with and donates to recipient B. Recipient B had a donor who was not compatible,
but now transplant three matches with and donates to recipient C. Recipient C had a donor
who was not compatible but now, transplant four matches with and donates
to recipient D. Recipient D had a donor who was not compatible
but now, and so on, and so on, and so on.
The gift chain of donations continues as long
as there are suitable donors and compatible recipients.
Some donor kidneys are suitable for certain patients
and can allow those patients to get a transplant sooner.
Here are the criteria that have expanded the donor pool.
Expanded criteria donors or ECD.
The age and health history of the donor and recipient are considered.
Hepatitis B core antibody positive.
Recipients who have been immunized against hepatitis B or may have had an exposure
in the past, may be able to receive a kidney that is from a donor who has been exposed.
Hepatitis C positive.
Organs from donors who have been positive for hepatitis C may be transplanted safely
to recipients who also have hepatitis C. Center for Disease Control.
High-risk behaviors involve using donated organs from a patient with a history of one
of the following -- sexually transmitted diseases; high-risk sexual behavior
in the last five years; injection drugs; having been in jail
or a mental institution in the last 12 months.
When the recipient is placed on the wait list, they will specify whether
to consider organs from these types of donors.
The coordinator will discuss this with you at the time of listing
and again at the time of the offer.
The recipient can then make an informed choice
and can either accept or decline the organ offer.
Your evaluation appointment today will take approximately five to six hours.
You have already had your labs drawn and your chest x-ray.
Following this video, you will go to the clinic where you will have an EKG,
have your picture taken, and you will meet with members of the transplant team.
It is important to understand that no patient is ever listed for transplant
on the day of their evaluation appointment.
There are several more steps to the process before anyone could be listed.
The evaluation process is an opportunity for the transplant team
to assess whether transplantation may be beneficial to you, and an opportunity for you
to assess whether transplantation is right for you.
You will meet with the following members of the transplant team during your evaluation today.
The transplant nephrologist specializes in kidney disease and will focus
on assessing your overall health in preparation for a transplant.
The transplant surgeon specializes in performing kidney and pancreas transplants
and will determine whether the operation can be performed safely on you.
The social worker specializes in helping patients and their families understand and cope
with the issues they may face related to transplantation.
Your transplant coordinator facilitates your journey through the transplant process.
You will also have access to a financial coordinator who will assist you in understanding
and facilitating the financial aspects of transplantation and your insurance coverage.
After all the testing results are obtained, your case will be reviewed
by the transplant evaluation committee.
The committee includes the nephrologists, the surgeons, the social workers,
the financial coordinators, dieticians, pharmacists,
living donor advocate and the transplant coordinators.
All listing decisions are made by this committee which meets each week.
The committee will review your case and make one of the following decisions --
continue the evaluation process; do not list, or list for transplant.
Following the transplant evaluation committee meeting,
your transplant coordinator will write a letter to advise you of the committee's decision
and notify you of the next steps to take.
You should receive this letter within two weeks following the meeting.
If you do not receive the letter, please contact your transplant coordinator.
You may receive a letter advising you the team requires additional testing before they can make
a recommendation on whether you meet the listing qualifications.
In addition to the letter, your transplant coordinator may contact you by phone
to explain the results and the additional testing you need
and answer any questions you may have.
The letter will include the specific testing you will need
to complete before the committee can review your case again.
The letter will also include the contact information
where you should have the testing results faxed.
You may also be contacted by your social worker regarding social goals
to complete prior to being listed.
Once the results from the additional testing are received,
your case will be reviewed again by the committee.
Another letter will be sent to you following the review of your case,
notifying you of the final decision and any steps that should be taken.
You may receive a letter that indicates your records were reviewed by the committee
and our team feels that a kidney and/or pancreas transplant is not in your best interest
and does not recommend you proceed with transplantation.
While this may be disappointing to learn,
it is important to remember the committee only advises transplantation
when it appears it will benefit and not harm the patient.
You may receive a letter indicating that you meet all the listing qualifications
and are being listed for a deceased donor organ transplant.
The letter will include all the information you need to remain
in an active status on the wait list.
It will be very important to keep your transplant coordinator informed
about any changes in your life that may impact your listing and/or transplant.
These may include changes in your address, phone numbers, insurance, health conditions,
hospital admissions, surgeries, accidents, and/or blood transfusions.
You will be listed on a national registry that is administered by the United Network
for Organ Sharing, also known as UNOS.
UNOS facilitates the organ matching and placement of donated organs.
Your listing will reflect the University
of Michigan Transplant Center as your service center.
Gift of Life Michigan is the only federally designated organization in Michigan authorized
to recover donated organs and tissue.
When an organ becomes available, the local OPO runs the match list using the UNOS database
and places offers to the transplant centers who serve the patients being offered the organ.
To place your name on the wait list for a deceased donor organ,
UNOS requires the following information.
Confirmation of blood type; two separate tests are required to confirm your blood type.
Panel reactive antibody levels, or PRA.
This identifies the antibodies you have that would cause a reaction against certain donors.
Samples are only good for 60 days from the draw date.
Antigen data and genetic markers.
For matching purposes, six specific antigens are considered in the recipient and the donor.
A 6-antigen match is considered a perfect match.
The type of transplant being listed for -- kidney, simultaneous pancreas and kidney,
pancreas after kidney, and a pancreas alone.
Dialysis start date.
The dialysis start date will be entered for patients listed in the state of Michigan.
For patients listed after they are on dialysis, their wait time will accrue
from their dialysis start date, not their listing date.
We generally list all patients for a deceased donor organ,
even those planning for a living donor transplant.
Doing so protects the patient by allowing them
to accrue wait time while they pursue living donation.
Occasionally, living donor transplants cannot be accomplished
and the accrued wait time has value for the recipient.
Multiple listing allows a patient to be listed at two or more transplant centers
in different donation service areas, or DSAs.
There is no guarantee that multiple listing will shorten your wait time although it is possible
that it will.
There are many things to consider in your decision whether to have multiple listings,
such as the listing requirements for each institution you wish to be listed at;
ongoing lab tests; travel; insurance coverage; and post-transplant care.
Here are some things you should know.
You can multi-list.
The U of M Transplant Center accepts multi-list patients.
We will transfer your records to other centers upon request.
And we require written requests for transfers, switches in weight time, or primary wait time.
If you are interested in multiple listing, please read the information on this
in your patient education guide and discuss it with your transplant coordinator.
Being active on the list means that your name would appear on a match list
if an organ becomes available and that you would be able to come for a transplant.
To remain active on a list, you must have an annual visit in our pre-kidney clinic.
You must complete all requested and ongoing testing and have the results approved.
You must use the kit we send each month to have your blood drawn and sent to our lab
for tissue typing, which screens for new antibodies since your last sample.
You will not receive an offer if your samples are greater than 60 days old.
If you have a live donor in the evaluation process,
you'll be asked to submit monthly sera before being added to the wait list.
Being on the list with a status of on-hold means that if an organ becomes available,
your name would not appear on the match run so you would not be offered the organ.
Patients still accrue wait time while they are on-hold.
You may be placed on hold for a variety of reasons which may include a change
in your health status; no current blood work; social goals that are incomplete;
requested testing has not been completed; you are on a planned vacation
out of the area or we are unable to contact you.
Your monthly blood draws are required when your status is on-hold.
Your listing will be returned to active status
when you have met the criteria specific to your situation.
You will want to use the time you are waiting
for you transplant to learn about transplantation.
We suggest that you read your patient education guide each month.
It provides the information you will need to know in the general order it will occur.
There is a list of transplant-related websites
in the resource section of your patient education guide.
These websites provide a wealth of information on a variety of aspects of transplantation.
You may also find it helpful to attend support groups.
Your social worker can assist you in finding a support group.
It is important to keep all your clinic appointments.
Stay in contact with your transplant coordinator,
your financial coordinator and your social worker.
If you have questions, please contact your transplant coordinator.
Having a stable support system is crucial
in maintaining a positive attitude while you wait for a transplant.
Make every effort to maintain strong connections with your family and your friends.
If the support people who planned on helping you can no longer do so,
please contact your transplant center social worker.
Once the call comes in, the transplant coordinator has one hour to reach you,
and to accept the organ that has been offered for you.
There are many steps to coordinate this process that must occur within that hour.
It is imperative that the coordinator knows how to reach you.
Please keep your contact information up to date.
It is helpful to have developed your own plan for how you will get
to the hospital when the call comes.
In life, not everything goes as planned so it is important to have a backup plan
in case your first choice is not possible.
As you think through what will need to occur when you get the call to come to the hospital,
don't forget to plan for childcare, pet care, temporary lodging and meals
for your family during and after your transplant.
Don't forget to plan for added expenses such as the cost of parking at the hospital.
Consider whether you will have a loss of income during this time
and plan for how to manage your expenses.
It is important to think through what will happen when the call comes
and to have made plans for handling the specific details.
Be prepared.
Review your plan periodically and make changes as necessary to stay prepared.
The call to offer you a donated organ can come at any time,
but it often comes in the middle of the night.
The coordinator works in collaboration with a transplant surgeon to coordinate the offer.
The coordinator has only one hour to complete the process to find you
and to accept or decline the offer.
It is important to always answer your phone even
when you do not recognize the caller's telephone number.
Since the call can come at any time, the coordinator may be calling you
from any location they are at, not just from the hospital.
Be sure to keep your transplant coordinator informed of your current contact information.
If you are away from home, be sure others know how to reach you.
If the coordinator cannot reach you,
you will miss the opportunity to receive that donated organ.
Do not rush to the hospital.
While the coordinator has only one hour to accept or decline the organ offer,
they will give you plenty of time to arrive at the hospital.
The donated organ will be packed in cold storage and will remain viable for up to 24 hours.
We prefer to perform surgery as soon as possible and to have you at the hospital six
to eight hours before the surgery.
Even so, you will have plenty of time to get to the hospital.
Drive carefully and wear your seatbelt.
Be sure to bring the essentials you have packed for this trip,
including telephone numbers you may need and money for parking.
Please bring your patient education guide as that will be used after your surgery
to teach you about the medications you will take,
and how to care for yourself when you go home.
When you arrive at the hospital, proceed to the area of the hospital as instructed
by the transplant coordinator who called you.
A clinical trial, also called a research study,
is a study that helps test whether a new treatment or medication is safe and effective
or whether older treatments produce the best results.
In organ transplants, previous studies have been very important
in finding the best way to care for your new organ.
Clinical trials have been found to be the best way to make sure new drugs,
devices and procedures are safe and effective.
Prior to surgery, you may be asked to participate in one of these studies.
You are not required to join.
You must volunteer in order to be able to take part in a clinical trial.
A decision should be made after you have full knowledge of what is involved.
Taking part in a clinical trial may or may not improve your health.
You may be one of the first to try a promising new drug
or you might receive the standard or regular therapy.
All clinical trials are reviewed and approved by a safety
and ethics board before any patients can be enrolled in a study.
Patients will meet with a member of the clinical research team who will explain the studies
and answer questions before the patient makes a decision.
Many studies provide free medications after transplant.
Each patient enrolled in a clinical trial is monitored very closely while participating
in the study.
Whether you choose to join a study or not, you will be cared for by the transplant center team
of dedicated professionals who are interested in your health.
One of the most important reasons for joining a clinical trial is a desire
to help advance what is known about new treatments.
The length of time a recipient spends in the operating room varies,
but generally is between two to four hours.
The new kidney will be placed in the lower abdomen either on the left or the right side.
The existing kidneys, called native kidneys, usually aren't removed,
although they can be if they are causing problems.
A ureteral stent is a small soft tube about 6 inches long and about
as big as a coffee swizzle stick.
It is placed in the ureter, which is the muscular tube
that drains urine from the kidney to the bladder.
Each end of the stent is shaped like a J, or a pigtail.
The surgeon may place a ureteral stent during the surgical procedure
to help the body heal the connection between the kidney and the bladder.
The stent should be removed by the urologist between three to eight weeks following surgery.
After the operation, transplant patients must get out of bed
and walk three times each day beginning the day after transplant.
Walking soon after surgery will speed recovery in many ways; it encourages an early return
of you bowel functions; it promotes effective breathing; it mobilizes secretions
from the lungs; it improves circulation; it prevents stiff joints and it relieves pressure.
It is suggested you get out of bed and sit in your chair
to eat meals at breakfast, lunch, and dinner.
You will need your support person while you are hospitalized.
Patients recovering from surgery are not at the top of their game.
The support person can be helpful in assisting with the walking sessions,
being present at the learning sessions about how to care for yourself following discharge,
and learning about your medications.
Teamwork is essential, so we encourage the patients
and the support person to approach this as a team.
During your inpatient stay, you will be cared for by a team of professionals.
At times, it may seem confusing or overwhelming to have so many different caregivers coming
and going from your inpatient room.
Be assured, each team member has a specific purpose and they are all working together
to provide you the best possible care.
The average length of stay for kidney recipients is two to three days,
and for pancreas recipients it is four to seven days.
Prior to discharge, all patients receive training in how to care
for themselves following surgery including wound care, nutrition, and medications.
Your immune system protects you by fighting infections and foreign bodies.
Your immune system will recognize a newly transplanted organ
as a foreign body and will fight against it.
Medications called immunosuppressive drugs are used to prevent your body
from rejecting your newly transplanted organ.
You will need to take immunosuppressive medications for your lifetime.
These medications are very expensive, costing between $2000 and $4000 every month.
You will need to work with your financial coordinator to develop a sound insurance
and financial plan to cover the costs of these medications.
As a transplant recipient, you will begin taking new medications the day of
or the day after your transplant.
You will take medications to prevent rejection,
to prevent infection and other mediations, as well.
You will need to take some combination of medications for the remainder
of your life or your kidney will fail.
All medications have possible side effects.
Here is a list of side effects associated with your transplant medications.
You are not likely to have all the side effects or have them all at a high intensity.
If you have any concerns about your side effects,
you should discuss your concerns with your transplant nurse.
Many of the medications must be tapered or slowly reduced.
Do not independently withdraw from taking any medication.
Discuss any concerns you have with your transplant nurse or physician.
To prevent rejections, you will take a combination of three medications
after surgery -- prednisone, which is a steroid; mycophenolate; cyclosporine; or tacrolimus.
Due to their anti-inflammatory and immunosuppressive properties,
steroids have been a main component in the immunosuppressive regimen for the prevention
and treatment of acute rejection after kidney transplantation.
Prolonged exposure to steroids results in significant side effects
which include worsening cholesterol levels and high blood pressure.
The development of post-transplant diabetes mellitus, weight gain, and osteoporosis.
While our standard protocol is designed to minimize these effects
by keeping the maintenance steroid dosage low, some patients may be interested
in an alternative steroid-free approach.
Not all patients qualify for the steroid-free protocol.
Patients who are concerned about using steroids are encouraged to discuss this
with their transplant physician during their appointment.
Mycophenolate mofetil, or CellCept, and mycophenolate sodium, or Myfortic,
are medications used in combination with tacrolimus or cyclosporine.
Their main toxicities are diarrhea and suppression of bone marrow.
These medications could cause serious harm to a fetus if taken while pregnant.
Women of child-bearing ages should have a negative pregnancy test within a week
of starting this medication, and should use two forms
of contraception unless abstinence is the chosen method.
They should begin the two forms of contraception four weeks before beginning the medications;
continue during therapy and for six to twelve weeks after they stopped taking the medication.
If you have any questions regarding these medications or pregnancy,
please discuss it with your transplant coordinator or physician.
Valcyte is a very expensive medication, approximately $1500 a month,
which may be indicated to treat or prevent infection.
This medication may or may not be covered by insurance.
You must learn about each of your new medications before you can be discharged
from the hospital.
You will need to know the drug name, the purpose of the medication, the side effects,
and the dosages of each medication.
The nursing staff will work with you and your caregiver to develop a self-medication schedule.
Your support person must participate in learning about your medications.
To ensure you can safely manage your own medications at home,
you and your support person will be quizzed to demonstrate your knowledge
about your medications prior to discharge.
On the day of discharge, you will be focused on "Let's go home."
While we do our best to help you accomplish your discharge efficiently, it is important for you
to know that there are many processes that must be completed before you can go home.
The staff must be sure you have a 30-day supply of medications before you are discharged;
your inpatient lab tests are completed;
the lab tests for your first outpatient clinic appointment are prepared;
and that your follow-up appointments to the clinic are made.
The staff must review discharge instructions with you prior to your departure.
Patients who travel long distances to get home may want to stay in a local hotel the night
of discharge since discharges may occur late in the afternoon or early evening.
Patients should make plans to have someone stay with them to provide around-the-clock support
for the first weeks after going home.
Recipients will return to the clinic for their first appointment after surgery
within a few days after discharge and will visit the clinic weekly for the first six weeks.
Each recipient will have an individualized clinic visit schedule based
on their needs after the first six weeks.
Blood draws will need to be done twice weekly for the first three months after discharge.
The total surgical recovery period is six to eight weeks.
Recipients will need to plan transportation to their lab
and clinic appointments during the surgical recovery period.
In order to diagnose rejection of the transplant before irreparable damage occurs,
we do frequent biopsies in the first year following transplant.
A biopsy will be performed in the operating room at the time of transplant and then at three,
six and twelve months after transplant.
A biopsy requires a needle puncture in the area of the transplanted kidney.
It is important for patients to understand that we are bound by the regulations set forth
in the Health Insurance Portability and Accountability Act, or HIPAA.
We cannot share your medical information with anyone
without your expressed written permission.
We cannot tell your spouse, father, mother, sister, brother, daughter,
son, friend, or neighbor anything.
We cannot answer any questions from the donor about the recipient.
We cannot answer any question from the recipient about the donor.
If you want us to be able to talk about your medical care with another person,
you need to sign an authorization that we will keep on file.
You are not listed on the day of your evaluation.
You will only be listed when you have completed all the requested testing,
your case has been reviewed by the transplant evaluation committee,
and it has determined you meet all the criteria for listing.
You will know you are listed when you receive a letter
from your coordinator informing you the committee has made the decision to list.
You should receive a letter within two weeks
of the evaluation meeting stating what the next steps are.
If you do not, please contact your transplant coordinator.
Your patient education guide includes a listing of the key players and their telephone numbers.
Many support groups are available and some are listed in the patient education guide.
The United Network for organ sharing provides a toll-free patient services line
to help transplant candidates, recipients
and their family members understand organ allocation practices and transplantation data.
You may also call this number to discuss a problem you may be experiencing
with your transplant center, or the transplantation system in general.
This concludes our presentation on kidney transplantation.
If you have any questions, please contact us at the phone numbers listed on screen.
Thank you for considering kidney transplantation at the University of Michigan Transplant Center.
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