When your doctor tells you that you have a liver condition called PBC, or `Primary Biliary Cholangitis`, you may be feeling very scared and anxious. "What will happen to my liver? Will I have to have a liver transplant?" You may be wondering. But don't worry. In fact, not everyone with PBC needs a liver transplant. In this article, we will talk about when a liver transplant is needed, what the reasons are, and how your doctor makes this decision.
First, let's see why not every PBC patient needs a liver transplant.
Simply put, PBC is a very slow-growing disease . Especially if you catch it early and follow your doctor's instructions, it can take 15 to 20 years for the disease to progress to the severe stage. Many people can manage their symptoms with the right medications and live a normal life for years without any major side effects.
That means there is no reason to be afraid of having a liver transplant just because you have PBC. It is only needed for a small number of people who have very severe, terminal disease.
Imagine, if you are diagnosed with the disease a little late, or if you have an aggressive form of the disease that spreads more quickly, that's when you have to think about a liver transplant.
So, when should you consider a liver transplant?
Your doctor and medical team will look at several factors to decide whether you need a liver transplant. This is not a one-time decision. They will continue to monitor your condition and come to a conclusion.
Let's see what those main reasons are in the table below.
| Reason for referral for liver transplant | What does this mean? |
|---|---|
| Treatment failure | If the disease cannot be controlled with the medications you are given, for example , Ursodeoxycholic acid (UDCA) and Obeticholic acid (OCA) , and the damage to the liver continues to occur. |
| Liver Failure | If the liver becomes severely scarred (this is called cirrhosis ) and the liver is unable to perform its main functions, such as cleaning the blood and making proteins needed by the body, |
| The occurrence of other serious complications | If PBC causes other serious, life-threatening health problems, such as bleeding in your digestive system (GI tract) or liver cancer, you may need to consider a transplant. |
| Unbearable symptoms | Sometimes, even if the liver is not in failure, if symptoms such as unbearable itching or extreme fatigue cannot be controlled with medication, a transplant may be recommended to improve quality of life. |
Symptoms that the doctor pays more attention to
In addition to these main things, your doctor will be looking for other things. For example:
- Are your eyes and skin turning yellow (jaundice)?
- Does the abdomen fill with water (ascites)?
- Are you vomiting blood?
- Is memory and consciousness impaired (Hepatic encephalopathy)?
These symptoms mean that the liver is having difficulty doing its job properly. At such times, even if your symptoms are not severe, your doctor may decide to refer you for a liver transplant.
How does the process of being referred for a liver transplant happen?
Your general practitioner will refer you to a hepatologist , a doctor who specializes in diseases of the liver and gallbladder. If he or she thoroughly examines your condition and determines that a transplant is necessary, you will be referred to a specialized center in a hospital that performs liver transplant surgeries.
This is a bit of a long process.
1. Meeting the specialist team: You will be examined by a large team including surgeons, liver specialists, nurses, and social workers.
2. Tests: Many things like blood tests and scans are done to see if your body can withstand such a major surgery.
3. Placement on the waiting list: If everything is suitable, you will be placed on the national waiting list to wait for a liver.
It can take months, sometimes longer, to get a liver. A liver is obtained either from a deceased donor, or from a living person, such as a family member, who donates part of their liver.
The important thing is that just because your doctor has referred you for a transplant doesn't mean you'll have the surgery tomorrow. It just means that you've taken the first step to preparing yourself for it in the future, should it become necessary.
What should I do?
The most important thing for you to do is not to panic and to maintain constant communication with your doctor.
- Go to clinics on time: Don't skip any clinic. It's essential to monitor your condition.
- Take your medication exactly as prescribed by your doctor: Take your medication at the right time and in the right dosage.
- Healthy lifestyle: Stop drinking alcohol completely. Eat a balanced diet. Consult your doctor for further advice on this.
- Ask questions: Talk openly with your doctor about your fears, doubts, and concerns. Don't be afraid to ask questions like, "Doctor, how are my reports? Should I consider a transplant?"
Living with PBC can be challenging, but remember, with today's advanced treatments, many people can successfully manage the condition and live a good life.
Take-Home Message
- Not everyone with PBC will need a liver transplant. This is usually a very progressive disease.
- A liver transplant should only be considered when treatment is unsuccessful, if the liver becomes completely inoperable (liver failure), or if other serious complications occur.
- The final decision on whether or not you need a transplant is made by your specialist doctor, based on your blood tests, symptoms, and overall health.
- The best thing you can do is follow your doctor's instructions, take your medication as prescribed, and attend clinics.
- Talk openly with your doctor about any questions or concerns you have about your condition.
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