Liver transplantation is often recommended if your PSC has progressed to end stage liver disease (ESLD). ESLD means the liver is approaching failure. In some cases other health issues suggest the need for a transplant, for example, a high frequency of cholangitis attacks and sepsis risk. For many PSCers transplant offers a new lease on life, and for around 80 percent of recipients, their PSC does not reoccur after transplant surgery.
Annually around 6,000 people receive a liver transplant for a variety of liver diseases. The national liver waiting list each year stands at around 16,000 people waiting for a liver.
PSC Partners Seeking a Cure supports organ donation and actively works to increase the number of people who make these gifts each year. There are personal stories of transplant journeys you can read by clicking here.
If your specialist recommends you for a transplant, you will enter another level of medical tests, terminology, and anxiety. It can be confusing, but many PSCers have had transplants successfully and can help support you through it. At our annual conference we always offer medical presentations on transplant topics. Attendees who have had transplants are happy to discuss the surgery on a one-to-one basis. They can tell you how it was for them from a patient’s point of view.
Education-for you as well as your caregivers-is an important key to a successful transplant. You are the first, best advocate of your own care and treatment. Start reading about the process. Ask questions of your physicians. Don’t accept vague answers or be put off. PSC Partners members caution, however, that many physicians, even gastroenterologists, are unfamiliar with the transplant system and do not always have up-to-date information. They might never have had a transplant case in their practice. You may, once more, be in the position of educating a medical team.
Physicians who know the most and can educate you best about your situation would be hepatologists within a transplant center. They, as well as transplant psychologists, social workers, dieticians, patient coordinators, and nurses, are used to providing information to patients considering a transplant. Don’t be shy. Well-informed and determined patients seem to have an easier time communicating with the team.
There is a lot you will need to know as you approach this important surgery. You’ll need to check your health insurance coverage and know what it will cover. Learn your rights and the rules of the transplant system. People who are pre-transplant usually want to know waiting list rules, how the surgery will be done, the medications one needs to take before and after, complications that can occur, estimated recovery time, and post-surgery follow-up. The more you can learn ahead of time, the better prepared you will be.
Resources for becoming educated include numerous websites on transplant topics, educational materials produced by pharmaceutical companies, meetings and conferences held by transplant centers for their patients. The transplant center you are considering may have patient education materials either online or as handouts.
Mentor or “buddy” programs offered by transplant centers or online as well as transplant support groups (locally and online) are invaluable. There are many things you’ll want to know ahead of surgery that only another patient can tell you. A buddy can help prepare you for post-surgery life, as well.
The American Liver Foundation and/or your transplant center can tell you if such support programs are available locally. Click here to learn more about online support groups.
While the internet can be extremely useful for transplant and PSC research, it would be wise to ask your specialist about any information you pick up through the internet and through other reading or conversation. Your situation is unique- well-intentioned advice from laymen may not be right for you.
You will need to select a caregiver for this important surgery, and that person may need to take an advocacy role in some instances. For that reason, your caregiver ought to become educated along with you, ahead of time. Check the portion of the site on caregivers by clicking here.