Many thanks to the PBCers Post Transplant Group for compiling this information.
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.
Who will need a Transplant
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.
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?
What are Transplant Centers
A transplant center, also referred to as a transplant hospital, is where transplants are performed. Every transplant hospital in the United States is a member of the Organ and Procurement Transplantation Network (OPTN) and must meet specific requirements that promote safe and effective transplants that are performed by experienced health professionals. There are 124 liver transplant programs in the United States and other centers worldwide.
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.
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, 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.
What are the Organ Procurement Centers (OPOs)
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 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.
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. Organ Procurement & Transplantation Network
Waiting for a Transplant
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.
- 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.
Cost of Transplantation
The cost of transplantation and follow up care varies across the country. You will incur costs even before your transplant. These costs may include:
- Pre-transplant evaluation and testing
- Anti-rejection and other drugs can easily exceed $8500 per year
- Hospital stay and surgery
- Fees for surgeons, physicians, radiologist and anesthesiologist
- Follow-up care and testing
- Fees for procurement of the organ from the donor
- Insurance deductibles and co-payments
- Physical, occupational and vocation rehabilitation
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 and 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?
- 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?
- Does the hospital have an agreement with my insurance company to accept a lower payment than the normal charge?
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.
Recovery after Transplant
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.
Rehabilitation after Transplant
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 currect medications, dosages, etc with you are 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 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?
- Which drugs should I take with food?
- Are generic drugs OK?
- Should I take antibiotics before/after my dental visits?
- Which over the counter medicines should I avoid?
- What vitamins should I take?
- What vaccines should I get (flu, pneumonia, etc.)?
- 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 immuno suppressive 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 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.
Post Transplant Labs
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.
Information on the PBCers transplant webpage was compiled by members of the PBCers Post Transplant Group