Dealing With Immunosuppression After a Liver Transplant

Every transplant patient must take immunosuppressive medication to prevent rejection of their organ for the rest of their lives. Without these drugs, the organ will not survive, and damage will happen quickly.¹ It’s important to remember that some people adjust to immunosuppressant drugs with no problems.

Transplant centers typically follow protocols related to immunosuppression, which means that each patient receives the same medication post-transplant. The doctor can change your medication if your side effects are severe or if they believe your situation requires a change. Your medication may also be decreased over time. You may be one of the lucky people who tolerates immunosuppression well.

Dealing with post-transplant side effects

Some people are plagued with anxiety and side effects post-transplant. Immunosuppression can have side effects, including weight gain, gastrointestinal upsets, nausea, vomiting, thinning bones, headaches, fatigue, acne, hair loss, mouth sores, and tremors.² The side effects are particular to each immunosuppressant, and it is likely that you will not experience all of them. You may not experience any of them. It's important to talk with your doctor if any side effects appear.

I was started on Tacrolimus and did not tolerate it well. I had recovered from the surgery very quickly and was feeling great, but I deteriorated in my first week home. I ended up being unable to walk very well and I could not inject my medication anymore, which had not been a problem prior to the surgery. They switched me to Everolimus and CellCept and I felt a bit better. I am still on those same medications 4 years later and I don’t have any side effects aside from fatigue.

Transplant patients often worry because immunosuppressants can increase your risk of infections.² Your care team will discuss this with you and recommend preventive practices related to your prescribed immunosuppressants. For instance, my immunosuppressant predisposes me to skin cancer.³ Therefore, I need to be careful to apply sunscreen whenever I am in the sun and to visit a dermatologist every year to have a skin check.

Following your doctor’s prescription is key

Make sure that you follow your doctor’s prescription for your immunosuppressant exactly as it is written. Many immunosuppressants have short half-lives, meaning they may only be circulating in your system for short periods of time.⁴ Many people use a timer to be able to be exact about taking their medicine. Rejection can occur quickly if you’re not careful.

I don’t remember being told to take my medications exactly every 12 hours. But truthfully, I was not remembering much after my transplant. Later, one of my doctors discontinued the evening dose of CellCept and my liver studies increased outside of the normal range. The next doctor I saw said it should not have been discontinued because it would not hold me for 24 hours, so I went back to every 12 hours.

I was unable to obtain Everolimus over a weekend once and just those few days caused my AST and ALT to elevate, indicating rejection. They quadrupled my doses, and my blood levels returned to normal.

Remember, you are immunosuppressed

Transplants are lifesaving. They require a lifetime of taking immunosuppressant medication. Make sure that you communicate all your concerns, discomfort, and side effects carefully with your physician so they can help you be compliant with your medication regimen.

Remember that you are immunosuppressed. That means that you are more likely to catch any illnesses that are circulating in the people around you. It also means that if you catch something, you will likely have a more difficult time recovering. Your body has trouble fighting off viruses, germs, and even fungi. You need to take precautions whenever possible. If you’re in large crowds, consider wearing a mask. If you get a wound, be sure to clean it carefully. Wash your hands frequently. You just need to remain aware of your environment.

I caught COVID a week after I was discharged from the hospital. I had a severe case and was hospitalized again for a month. I wear a mask when I feel I need to. Although it is hard these days when people are not wearing masks, I am happy to avoid any illness. I also cut my finger once when making dinner. It was not a big cut, but it quickly became infected, turned into cellulitis and began traveling down my arm. It's likely that this would not have happened before I was on immunosuppressants. You must learn how your “new” body reacts to germs and illness and act quickly to avoid or prevent them from becoming serious.