My Care Team
It is common for people living with PBC to see several doctors and specialists as part of routine care. Having informed conversations with these different providers can be a help in disease management and treatment, especially when facing a rare disease like PBC. It is important to work with your doctor to proactively manage your disease and monitor your alkaline phosphatase (ALP) and bilirubin levels, because new data indicates that lower levels are linked to better outcomes for people living with PBC. Your doctor will determine what levels you should reach for the best outcome.
What types of doctors may be treating me?
General practitioners (GPs) are medical doctors trained to provide primary healthcare to patients of all ages. These physicians may or may not be familiar with PBC, and if the need arises, the GP can recommend and refer patients to specialists such as hepatologists and gastroenterologists. The standard blood test that looks at overall liver health as well as ALP and bilirubin levels will most likely be conducted and analysed by your GP.
Hepatologists are doctors who work specifically in the branch of medicine called hepatology. Hepatology incorporates the study of the liver, gallbladder, biliary tree, and pancreas.
Gastroenterologists are specialists with dedicated training in managing disorders of the digestive system and liver. The digestive system and its disorders affect the liver, pancreas and gallbladder, as well as the oesophagus, stomach, intestines, colon, bile ducts and rectum.
Dermatologists are medical doctors who specialise in the skin and diseases of the skin. People with PBC often end up visiting the dermatologist – sometimes before diagnosis – if they are experiencing pruritus, or itching, which is a common symptom of PBC.
Nurses are medically trained healthcare providers who collaboratively support patients of all ages in many different settings. Nurses may often be the individuals who work day-to-day with the patient on symptom management and treatment, and can be a help in the conversations between patients and their doctors. The role nurses play in your care routine could vary depending on where you live.
Consider including friends and loved ones outside the medical community in your care routine. Some symptoms, such as fatigue, may make day-to-day life difficult at times. It is helpful in those instances to have a carer who is informed and willing to “check in” and ensure you are able to make your appointments. Carers can also help by accompanying you to medical appointments and taking notes on what the doctor recommends, making it easier to remember and follow that advice afterwards.
If there is a regional patient advocacy group or support group where you live, consider getting in touch with them for information and guidance, as well. These groups provide a wealth of information, and can help to further enhance your insights on living with PBC. This includes emotional support and connection to others living with PBC, which is helpful in combatting the stigma and isolation that comes with a rare liver disease.