What happens after I am discharged from the hospital?

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Even before your surgery took place, the transplant team has made sure you are well prepared to be at home. If you have any questions or concerns, never hesitate to call a transplant team member—the doctor, nurse coordinator, or social worker. You have a lot of information to learn and understand.

After your transplant you may feel anxious, frightened, and overwhelmed. It will take some time for your energy level to return to normal and for you to settle into the routines you need to follow to stay well. Although other people may assume you are healthy now that the surgery is over, remember that you need to be patient during this recovery phase and follow the advice of your doctors and nurses. You will feel better as time goes on—but it takes time. You may have some setbacks along the way and feel discouraged. Share your feelings with your family, others who are close to you, and your doctors and nurses. If you are concerned about what you are feeling, you may want to consider seeing a mental health professional. If so, your doctors, nurses, or social worker can refer you to someone near your home.

Follow-up Visits

An appointment with a transplant surgeon or physician is scheduled before you leave the hospital. It is very important to keep this appointment and future appointments so that your progress can be checked, your medications reviewed, and your laboratory tests monitored to confirm that you and your new organ are doing well. You may need blood tests at a laboratory near your home and/or at the hospital between visits as well.

Other tests, such as x-rays or a biopsy, may need to be performed at certain times, too. Your visits are typically scheduled once a week for 1 to 2 months after transplantation. They are then spaced every 2 weeks, then once a month, then once every 6 to 8 weeks, and finally once every 3 to 6 months. You also may have appointments with your gastroenterologist or primary care physician.

Medicines

You will be taking several medicines after your transplant (described in detail in Section 4: Medications). When you leave the hospital, you will be given a medication card that lists which medicines you are taking, what doses to take, and when to take them. At your followup visits your doctor and transplant nurse coordinator review your medications and discuss any concerns you have, including side effects you might be experiencing. Because medications are sometimes adjusted to achieve the best results with the fewest side effects, it is important to bring your medication card to your follow-up appointments to record any changes.

Your responsibilities regarding your medications are summarized here:

• Make sure you take your antirejection medications, as well as your other medications, at the same time every day.

• If you missed or vomited a dose of your antirejection medicine and do not know what to do, call your transplant team.

• Do not use any over-the-counter medicines, except Tylenol (acetaminophen, but no more than 2,000 milligrams in 24 hours), without checking with your doctor or nurse.

• Do not use alcohol, cocaine, heroin, or marijuana— they may put your transplant at risk.

• Call the transplant team if you have any questions or concerns about your medicines. 

Your Daily Record

It is wise to keep a daily record of your weight, temperature, frequency of urination and bowel movements, tube drainage, blood sugars (if you are diabetic), and any other notes. You should aim for accuracy when keeping this record, because it helps you identify signs of a problem and helps your doctors and nurses monitor your progress.

Your responsibilities regarding your daily record are summarized here:

• Fill in the information on your daily record sheet consistently and accurately. For example, take your temperature once a day at the same time of day.

• Weigh yourself at the same time every day on the same scale with the same amount of clothing on.

• Check the color and odor of your urine.

• Check your incision and tube site for an increase in redness and unusual drainage. Measure the amount of fluid draining from your tube site if you have one.

• Test your blood sugar at least two times a day: in the morning (this is called a fasting blood sugar) and in the late afternoon (only for those patients who have been advised to do so).

• Be sure to write down all of this information every day

What to Watch for and When to Call the Transplant Team

While you were in the hospital, your doctors and nurses were constantly watching for signs of a rejection episode, infection, and other problems. Now that you are at home, you need to be a partner in your care and watch for these signs yourself. If you experience any of the following symptoms or if you “just don’t feel right,” call your transplant team:

• Temperature higher than 100.5°F

• Flu-like symptoms, such as chills, aches, joint pain, headache, and increased fatigue

• Nausea, vomiting, and diarrhea

• Severe stomach cramps

• Increased pain, redness, or tenderness over your transplant site

• Abnormal drainage near or on your incision

• Very dark or tea-colored urine

• Decrease in the amount of urine or no urine at all

• Pain or burning when urinating

• Frequent urination

• Light or clay-colored stools

• Yellowing of your eyes or skin

• A 6-pound weight gain in less than 3 days

• Abnormal blood sugars (if applicable)

Here are more reasons to call the transplant team:

• You cannot or did not take your antirejection medications.

• Your drainage tube comes out.

• You are short of breath or have chest pain.

• You have persistent stomach pain or indigestion.

• You catch a cold or another illness.

• Your urine is cloudy, bloody, or smells bad.

• You have been exposed to chickenpox, measles, German measles, or mumps and have never had the disease.

• You lose 3 pounds in less than 1 day.

• You have increased swelling in your hands or feet. • Your doctor changes a medication or prescribes a new medication.

• You have sores or blisters in your mouth.

• You see white spots on your tongue or in your mouth.

• You want to take an over-the-counter medication other than acetaminophen (Tylenol).

• You have questions.

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