The Transplant Journey
At the start of everyone’s PSC journey, it is common to wonder whether a liver transplant will be needed. Some people have PSC for decades and never need a transplant. For many, a transplant is their only option if they are experiencing liver failure.
Fortunately, transplant centres in Canada are well-experienced in liver transplantation. The rise of living donor transplants has also improved outcomes by adding to the limited amount of liver transplants available from deceased donors.
Once you are added to the liver transplant list, many resources are available to help support and guide patients.
Getting on the liver transplant list
The process for getting on the liver transplant waitlist varies by health center and a PSC patient’s health. The first step will be a referral from your PSC specialist to a transplant center for evaluation. Typically, a transplant center will then conduct a full evaluation to determine if you are a good candidate for a liver transplant.
An evaluation can include an assessment of your overall health and liver function based in part on your MELD-na score which measures disease severity. For children <12 years of age the PELD is used. Your emotional preparedness and support system will also be evaluated. (MELD-na is acronym for Model for End-Stage Liver Disease with sodium, PELD is acronym for Pediatric Model for End-Stage Liver Disease)
Find out more about what’s involved in being considered for a liver transplant.
Living donor versus deceased donor transplants
Once you are added to the liver transplant list, there will be regular appointments to monitor your health and evaluate your MELD score. Livers from deceased donors are allocated based on medical need, not the length of wait time.
Waiting for a transplant can be a difficult and emotional time. Your transplant center can offer resources to help you deal with this stress.
Due to long wait times for a deceased liver transplant, many patients seek living donors. The donor might be a family member or close friend. A public appeal for an altruistic non-related donor may also be possible. Donors are matched with PSC patients based on compatible liver size and blood type. A part of the donor’s liver is removed and transplanted into the patient. The liver can regenerate to 90% of its original size within a few months.
Find out more about living donor donation.
Life after a liver transplant
Liver transplant surgery is complicated. Transplant teams across Canada are dedicated to helping patients through every stage of a transplant.
Recovery time can vary from person to person depending on your health before the surgery and whether there were any complications. For most people, their quality of life resumes to nearly normal and previous symptoms, such as itching and jaundice, can disappear quickly. Many people with PSC find that a transplant offers a new lease on life.
A person who has had a liver transplant will be monitored by a post-transplant team once they have been discharged from the hospital. Medical monitoring will continue indefinitely to check on the health of the new liver and to ensure there is no recurrent PSC.
Find out more about life after transplant
Transplant Evaluation
To become eligible for a transplant, you will need to undergo more medical tests. The transplant team needs to know about your physical condition to determine if you have other health issues. Not all additional medical conditions, such as diabetes, are disqualifying, but some will be. Some centers don’t transplant after a certain age or if you have HIV. Other centers do accept those patients. You will need to find out about the center you are considering. Some centers may disqualify candidates that another center might accept. If you are denied at one center, consider registering at another.
The Evaluation
During your evaluation, you will likely meet with a social worker, a psychologist, surgeons, nurses, financial coordinators, and others. Going through a transplant evaluation can be extremely stressful. Most people want to involve their caregiver in this process. Bring your questions, so they can be answered. You will have numerous blood tests, scans, cardiac, and pulmonary tests. Certain patients need additional tests. If you have been a substance abuser, your transplant center may require testing and counseling to be sure you have given up those activities.
Financing
At the point you are being evaluated for a transplant, you will meet with a financial coordinator who will review your insurance status. You will need to understand thoroughly what your coverage will provide in terms of testing, surgery, hospital stay and medications, and, of course, follow-up care. Some policies have limits on where you may receive care, tests, and surgery. Know what your policy offers. If you need to supplement your current insurance, there are resources a counselor or social worker can assist in identifying.
Proactive Waiting | Keep as Healthy as Possible
While you wait for the call that a liver is available, it is important to follow the instructions given by the center to care for your health. Your health needs to be as good as possible prior to surgery.
Other ways to stay healthy and focused while you wait include:
- Exercising appropriate to your condition
- Watching your diet
- Taking the medication prescribed
- Taking care of your routine check-ups, immunizations, and tests, including dental work. Post-transplant surgery dental procedures and other minor procedures may become a bit more complicated.
Know how to get in touch with your transplant coordinator and hepatologist. Know the physical signs that require a call or even hospitalization. Ask your doctors and transplant team if there is anything that you can do to stabilize or improve your nutritional intake or muscle strength as you wait for your transplant.
Keep Your Insurance Current
The social worker at the transplant center and the center’s business office can explain the importance of understanding what your policy covers, including pre-existing conditions. It is your responsibility to know what you can expect in terms of coverage. If you lose your insurance, it is important to keep the center informed, and work with them as you re-obtain coverage. There are resources for patients in that situation. Click here for resources about insurance coverage. You may need to plan for additional expenses related to surgery, such as medication coverage, travel expenses for yourself and caregivers, and comfort items.
Stay Educated
Use the waiting time to increase your knowledge. Here are some suggestions:
- Continue your education on transplants
- Attend meetings for patients
- Prepare yourself mentally
- Talk to liver recipients
- Find a mentor
- Try to keep in touch with friends
You may not be able to do everything you once could, but it is important to keep some normalcy in your life.
Keep Your Blood Tests Current
It is critically important to stay current with your blood tests. At low MELD/PELD levels you will need blood tests less frequently, but, as the score rises, you will be told to get them on a more rigorous schedule. If the results are not updated on schedule, your MELD/PELD score, which is reported to UNOS, will be lowered to a default number until you get the tests.
Keep Your Caregiving Team Involved
Let your caregiver in on your thoughts and how you are doing. Ask for help when you need it.
Connect with others living with PSC
- Participate in PSC Partners’ Facebook groups - Join the Closed Support Group or join the Open Support Group
- Volunteer with PSC Partners
- Join the PSC Partners Patient Registry
