What You Should Know About
Transplantation
Although most people with
PBC will never need a liver transplant, the following information provides
facts and dispels misinformation surrounding liver transplantation. The major
source for this material is:
Index
·
WHO WILL NEED A TRANSPLANT
o
What Is The Prognosis For
Patients?
·
THE TRANSPLANT TEAM
·
TRANSPLANT CENTERS
·
OPTIONS IN CHOOSING YOUR
o
Multiple Listing
o
Transferring Waiting Time
o
Living Donation
·
WHAT ARE ORGAN PROCUREMENT
ORGANIZATIONS (OPOs) MELD score
·
WAITING FOR A TRANSPLANT
o
Tips
o
Pack A Suitcase
·
COST OF TRANSPLANTATION
o
Insurance
·
TRANSPLANT RECOVERY
·
REHABILITATION AFTER
TRANSPLANT
·
MEDICATIONS-PROTECTING YOUR
TRANSPLANT
o
Organizing Your Medications
o
Tips On Traveling
·
POST-TRANSPLANT LAB TESTS
·
TRANSPLANTATION WORKS
o
Meet Some Of Our Post-Transplant PBC Members
·
BECOMING AN ORGAN AND TISSUE
DONATION SPOKESPERSON
o
Share your life. Share your
decision.
What is the prognosis
for patients?
PBC typically
advances slowly. Patients may lead active and productive lives for many years
after diagnosis. Patients who show no symptoms at the time of diagnosis often
remain symptom-free for years. Jaundice appears to be a sign of diminishing
liver reserve and may be an important indication regarding the progression of
the disease. The illness is chronic and may lead to life-threatening
complications, especially after cirrhosis develops.
When medical
treatment no longer controls the disease and the patient has severe liver
failure, transplantation is indicated. Signs of liver failure include
accumulation of fluid in the abdomen (ascites),
malnutrition, malabsorption, gastrointestinal
bleeding, intractable itching, jaundice, and bone fractures. Transplantation
may be recommended before all these events occur. The outcome for patients with
PBC who have undergone transplantation is excellent. The survival rate for two
or more years is about 80 percent. The use of new drugs to suppress rejection
has made transplantation even more successful. The disease's slow progress
makes it possible to plan elective transplant surgery.
Source: http://www.liverfoundation.org/db/articles/1014
Many people will be
working with you to make your transplant a success. This is your transplant
team. It is important that you know the people on your team and what they will
be doing to help you. You need to feel comfortable talking to them and asking them
questions.
As a patient, you are
an important part of the team, because you know your body best. Following are
questions you should consider asking your transplant team:
What are my choices
other than transplantation?
What are the benefits
and risks of transplantation?
What does the
evaluation process include?
How does the
evaluation affect being put on the waiting list?
How will I know I am
definitely on the list?
How long do most
patients with my blood type wait at this hospital?
How long has the hospital
been doing my type of transplant?
What are the organ
and patient survival rates for my type of transplant at this hospital?
How does this compare
to other hospitals?
How does the medical
team decide whether or not to accept a particular organ for a patient?
Does the hospital
perform living donor transplants?
What is the organ and
survival rate at this hospital for living donor transplants?
Is a living donor
transplant a choice in my case?
What is the process
for a living donation at this hospital?
A transplant center,
also referred to as a transplant hospital, is where transplants are performed.
Every transplant hospital in the
There are 124 liver
transplant programs in the
Below is a listing of
transplant networks in other countries:
The Eurotransplant
International Foundation is responsible for the mediation and allocation of
organ donation procedures in
International
Transplant Coordinators Society HQ in
http://www.med.kuleuven.ac.be/itcs/Home.html
CANADA- Canadian
Association of Transplantation offers organ and tissue
transplantation facts and statistics and many helpful links for healthcare
professionals and the public. As well, it provides an overview of CAT http://www.transplant.ca/index2.cfm
Transplant
TRIO
Some patients choose
to be listed for a transplant at more than one hospital in different parts of
the country, or they may choose to transfer their waiting time to a different
transplant center. Others may choose a living donor.
Multiple Listing
When a patient lists
at a transplant hospital, they are considered for a liver from a donor in the
local area first. If a patient is put on the list at more than one transplant
hospital, they will be considered for donor organs that become available in
more than one area. There is no advantage to being listed at more than one
hospital that is served by the same OPO.
National transplant
policy allows a patient to register for transplant at more than one transplant
center. However, each hospital may have its own rules for allowing patients to
list at another hospital. Patients should ask each hospital whether it allows
its patient to list at more than one transplant hospital. Generally, each
transplant center will require the patient to go through a separate evaluation,
even if the patient is already listed at another hospital. Each hospital has
their own criteria for listing a patient for transplant. Being listed at more
than one transplant center does not guarantee that a liver will become
available sooner for you than for patients listed at only one transplant
hospital.
Transferring Waiting
Time
Patients may choose
to list at a different transplant hospital and transfer their waiting time to
that hospital. For liver transplants, the waiting time is used only as a tie
breaker when the MELD scores and other criteria are identical.
The transplant teams
at the original hospital and the new hospital will be responsible for
coordinating the exchange of information and notifying UNOS of the transfer of
the waiting time. Patients should ask each hospital if they accept waiting
time.
Living Donation
In addition to
deceased donor transplants, patients may also receive a liver from a living
donor. The need for organ donors is far greater than the supply. Living
donation offers an alternative for individuals waiting for transplants.
Hundreds of patients
have received successful transplants from living donors. Parents, children,
siblings and other relatives can donate organs to family members. Unrelated
donors may also donate their organs if they are a match for the candidate and
the transplant hospital approves. Each transplant center has their own criteria
for approval of living donations.
A new brochure from
the joint commission, www.jacaho.org, entitled
“Speak Up” helps potential living organ donors make the process as safe as
possible by becoming informed, active and involved participants in their care.
The new brochure outlines basic facts about living organ donation, provides
advice as to what the potential donor should ask his doctor and describes where
to learn more about living donation.
Organ procurement
organizations are the vital link between the organ donor and the recipient.
They are responsible for recovering the organ, ensuring the viability of the
organ until it is transplanted and transporting the organ to the recipient’s
transplant team.
Each OPO provides its
services to the transplant programs in its area. This can be a large city, a
whole state or a region. To locate the OPO in your area, you can view the list
at www.organdonor.gov or call UNOS at
888-894-6361.
When a hospital
identifies a patient as a possible organ donor, the OPO is contacted. The organ
recovery coordinator from the OPO accesses the OPTN database to match the
donated organs with patients waiting for a transplant. All OPOs
allocate donated organs according to the OPTN policy that ensures that the
organ goes to the best candidate at the time for that particular organ. Livers
are allocated on the basis of the MELD system.
MELD
Livers are allocated
according to the recipient’s MELD (Model for End Stage Liver Disease) score and
their geographic location. The scores represent the patient’s risk of dying
within 3 months. The scores are calculated by objective medical criteria that
measure the patient’s condition.
The test results used
in the formula are the patient’s blood levels of creatinine,
total bilirubin and INR, the blood clotting test. As
liver disease progresses, the test results go higher. The higher the MELD
score, the higher the patient is on the waiting list. You can read about the
MELD system at www.optn.org.
You should try to
stay as active as possible while waiting for your transplant. This will aid in
your recovery. Even if you become weak or bedridden, you should still try to
breathe deeply, tighten and relax different muscles, stretch your arms and lift
your legs.
While you are waiting
for your transplant and not confined to the hospital, you may be asked to carry
a beeper. If not, you need to supply your transplant team with all possible
contact numbers. The transplant team will need to contact you quickly once a
suitable liver has been found for you. Once you are offered a liver, your
transplant center has only one hour to accept the organ or turn it down. If you
are not available or are unable to have the transplant at that time, the next potential
recipient on the list will be offered the liver. You will stay on the list for
future livers.
When your transplant
hospital calls you with the good news, you will be asked a series of questions
to determine if you have any signs of infection. These signs include a cough,
fever or burning sensation when you urinate. If you meet the health criteria,
you will be asked to go to the hospital to prepare for the surgery. Try to stay
calm and have someone drive you. If you live far away from the hospital, you
should have already have your transportation planned.
Start making your phone calls for transportation, babysitters and pet-sitters
right away.
TIPS
Always keep your
transplant coordinator’s phone number with you.
If you are carrying a
beeper, change your battery month to make sure it is always working.
To reduce the chances
of contacting a cold, flu or other infection:
Avoid crowds during
cold and flu season
Don’t share utensils
or drinking glasses
Wash your hands
frequently
Avoid sick children
Ask family and
friends not to visit when they are sick
Use bacterial
cleaning solutions
Ask you team about
precautions to take while cleaning up after pets
Do not share
cosmetics or nail files with anyone (including nail salons)
Have your laboratory
tests done as ordered, even if you are feeling well.
Yearly flu and pneumonia shots. It is also
advised to have the Hepatitis A and B shots.
Keep an extra request
for your lab tests with you in case you are out of town and need to have them
done.
PACK A SUITCASE
Pack a suitcase so it
is ready when you get the call. If your spouse or other family member will be
staying away from home, they should have a suitcase packed also.
You should consider
packing the following items:
Reading glasses, slip
in shoes, toothbrush, toothpaste, razor, shampoo, makeup, hairbrush and stuff
to do hair, really loose clothing for discharge, reading materials, clock,
paper, pen, photographs, phone numbers for friends and relatives, long distance
calling cards and any other items to make you comfortable.
The cost of
transplantation and follow up care varies across the country. You will incur
costs even before your transplant. These costs may include:
Medical costs:
Pre-transplant
evaluation and testing
Hospital stay and
surgery
Follow-up care and
testing
Anti-rejection and
other drugs can easily exceed $8500 per year
Fees for surgeons,
physicians, radiologist and anesthesiologist
Fees for procurement
of the organ from the donor
Physical,
occupational and vocation rehabilitation
Insurance deductibles
and co-payments
Non medical costs:
Transportation to and
from your transplant center, before and after your transplant
Food, lodging and
long distance phone calls for you and your family
Child and pet care
Lost wages for you or
your family member
You may need to live
near the transplant center before and after your transplant. Some centers offer
low cost housing. You may need to make arrangements for air transport to your
transplant hospital quickly. You should also make back up travel plans in case
of bad weather.
Few patients are able
to pay all the costs of transplantation from a single source. Most likely, you
will have to rely on a combination of funding sources. The most common funding
sources are:
Private insurance
Extending insurance
coverage through COBRA
Medicare and Medicaid
Fundraising campaigns
Charitable
organizations
Following is a list
of questions which you may want to ask your transplant financial team and your
insurance provider:
How much of the
transplant is covered by my insurance?
Specifically, what is
covered?
What financial
coverage is accepted by the hospital?
Does the hospital
have an agreement with my insurance company to accept a lower payment than the
normal charge?
How much will I have
to pay in addition to my insurance?
Who will pay for my
living donor’s testing and surgery?
How much are the
organ recovery costs if I have a living donor?
INSURANCE
Many insurance
companies offer coverage for transplant costs, however, the terms and benefits
of insurance vary widely. Your insurance company may pay some or all of your
transplant costs which include costs before, during and after transplant.
Many insurance
policies have a lifetime maximum or cap. This is the total they will pay out in
your lifetime. After the insurance company pays this maximum amount, it does
not have to pay any more benefits. You have no insurance. It is important to be
familiar with the amount and terms of your insurance cap, so you don’t run out
of coverage.
It is important to
find out if your insurance company has any special rules you need to follow,
such as pre-notification, pre-authorization or using a specific provider. You
must be sure to follow these rules so your benefits will not be decreased. Make
sure your transplant center knows if you have more than one insurance company.
One of the goals
after transplantation is to return to a normal routine of activities, hobbies
and work. This goal can be accomplished through a positive attitude, a healthy
diet, regular sleep habits and daily exercise. As an individual, your
transplant recovery may be different from someone else’s. It all depends on the
nature of your illness, how ill you
were before transplant and your individual health
status.
While you are
recovering from your transplant, you should try to stay as active as possible.
This will aid in your recovery. Even if you are weak or bedridden, you should
still try to breathe deeply, and stretch your arms and legs. Once you are home,
you should do some type of exercise every day like walking. Check with your
transplant team before you begin an exercise program. (Often, they now suggest
you have Visiting Nurses or such, for home physical therapy for a while to help
you build up your strength.)
It is common for
transplant recipients to be afraid that they will harm their new organ. Regular
exercise will not harm your new liver. It helps your heart, muscles and
circulation, allows you to keep your weight and blood pressure under control
and helps you to maintain strong bones. It can also help you relax, improve
your sleep and aid in physical and emotional well being.
A healthy diet plays
an important role in healing. The good news is that after transplant you will
probably have fewer dietary restrictions. You MAY have a better appetite after
transplant. Maintaining a normal weight will keep you from developing heart
disease, high blood pressure and diabetes. We are prone to diabetes post-transplant.
You need to drink plenty of fluids (unless you are told to limit fluids).
MEDICATIONS-PROTECTING YOUR TRANSPLANT
Your body protects
itself against foreign invaders, such as germs, by using its immune system.
Special blood cells attack the invader and destroy it before it can cause an
infectious disease. The body may see a transplanted organ as an invader and try
to attack (reject) it also. To stop this immune response, you will be taking
immunosuppressive drugs to suppress the immune system. One of the reasons
transplants are so successful today is due to these medications. While the risk
of rejecting your new organ decreases as time goes by, it never goes away. It
is important to know what happens if your body starts to reject your new organ.
Your transplant center will probably have you record your weight, blood
pressure and temperature daily.
It is important to
take all of your medication every day and at the times directed by your
physician. You will be taking these or other drugs for the rest of your life.
Your dosage and drugs will be adjusted according to your body’s reaction and
your lab results. Each drug has its own side effects. You should never change drugs or doses on
your own.
KEEP A WRITTEN
LIST OF YOUR CURRENT MEDICATIONS, DOSAGES ETC WITH YOU AT ALL TIMES (purse,
wallet, pocket)
It is important for you to know:
What is each
medication for?
What does it look
like?
What is the daily
dosage?
What times should
each medication be taken?(Immunosuppressive drugs need
to be taken every 12 hours)
What are the side
effects of the medications?
What side effects
should I call about?
What if I miss a dose
of the medication?
Who should I call for
a new prescription?
Are generic drugs OK?
Which drugs should I
take with food?
Should I take antibiotics
before/after my dental visits?
Which over the
counter medicines should I avoid?
What vaccines should
I get (flu, tetanus, hepatitis A and B, pneumonia, etc.)?
What vitamins should
I take?
Should I avoid people
who have had a vaccine? Which ones? For how long?
You need to learn
everything possible about your medicines. Your physician, transplant
coordinator and pharmacist can help. Medications should never be taken with
grapefruit or grapefruit juice. You should always check with your transplant
coordinator before taking any new medicines, even the ones you buy over the
counter, including vitamins and herbal remedies. You should also wear a Medic
Alert (or similar brand) bracelet that states you are a transplant patient and
take immunosuppressive drugs, in case you are ever in an accident or someone
finds you unconscious.
ORGANIZING YOUR MEDICATIONS
To incorporate your
medicine routine into your daily schedule, plan ahead and organize your time.
Following are some tips:
Use tools to organize
your medicines, such as a pillbox that has individual compartments for
days/times of the week.
Use an alarm clock,
cell phone or watch to remind you of the time for medications.
Ask your transplant
coordinator to set up a medicine schedule that fits your daily routine
Set up a time each
week to organize your medicines for the week.
Get into a routine.
Take your medications at the same time every day.
Keep track of how
much medicine you have left. Don’t ever run out, even one dose.
Mark your calendar so
you remember to reorder your medications ahead of time, allowing time for
delivery.
Keep your medication
in a cool, dry place, out of the sun and extreme heat.
TIPS ON TRAVELING
Always keep extra
doses of medicine with you in case you are delayed or miss a plane or train.
Keep your pharmacy
and transplant coordinator’s PHONE number with you AT ALL TIMES.
Never pack your
medications in your luggage. Always carry them with you. If possible, have a
traveling companion carry your extra doses.
Carry a letter from
your doctor about your medications if you are traveling overseas.
Prevent infection by
washing your hands often and thoroughly, especially before eating.
Throughout the
transplant process, you will undergo many tests to determine your health
status. It is important to understand what these tests are and what your normal values are. It is important to follow
instructions about having blood drawn, because test results can indicate
problems before they are too serious. You should ask the following questions:
Are you permitted to
eat or drink before your blood is drawn?
If not, how many
hours before the test should you stop eating or drinking?
What time should the
blood be drawn to measure the level of your
immunosuppressive drug? It is important to remember not to take your daily dose
until after the blood is drawn.
Data shows that more
people receive transplants every year, and people with transplants are living
longer. We would like to you meet some of our post transplant PBCers.
BIOS---Under Construction
BECOMING AN ORGAN AND TISSUE DONATION SPOKESPERSON
Once you have
RECEIVED a transplant and regained your health, perhaps you would like to be an
advocate for organ and tissue donation so that others can have the same
opportunity for lifesaving transplants. As you know, the organ shortage is the
reason why patients must wait so long for transplants. You can do a lot to help
promote awareness of the organ shortage and to increase organ donation. Each
day in the
SHARE YOUR LIFE. SHARE YOUR DECISION.
Two simple steps make
the lifesaving difference.
Step One - Share
Your Life
Make the decision to
become and organ and tissue donor.
Step two - Share
Your Decision
Sharing your decision
to be an organ and tissue donor is as important as making the decision itself.
At the time of your death, your family may be asked about donation. Sharing
your decision with your family now will prevent confusion or anxiety about your
wishes later. Carrying out your wish to save other lives can bring your family
members great comfort in their time of grief.
Transplant webpage created
by the members of the PBCers Post
Transplant Group
Many thanks to our
Post Transplant Group for providing this information and sharing their stories.