It takes time to regain energy and strength after transplant—often a year or more. Your immune system’s recovery is more gradual and can take years. Everyone’s recovery is different. Yours may be longer or shorter than other transplant recipients.
The most important thing you can do for your recovery is follow the instructions from your transplant doctor and nurses. They will tell you how to lower your risk for problems after transplant. They will also help you find problems early and get treatment quickly.
Tips to lower your risk for infection
After an allogeneic transplant (cells from a donor), you are still at risk for infection as long as you are on immunosuppressants (medicines that hold back your immune system). Even patients who are not taking immunosuppressants may be at risk for a year or more until their immune systems have fully recovered.
To lower your risk of getting an infection
- Wash your hands with soap and water often.
- Always wash your hands:
- Before you eat.
- Before and after preparing food.
- After you use the bathroom, take out the garbage or change a diaper.
- After touching animals.
- After sneezing, coughing or blowing your nose.
- Take medicines and get vaccines as instructed by your doctor.
- Avoid gardening and touching plants and soil.
- Avoid cleaning up after pets.
- Wear your mask as recommended.
Eating out, crowds
- Ask your transplant team before eating out and being in crowded places.
- Cook food thoroughly. Don’t eat raw or under-cooked meat or seafood.
- Take showers daily. Ask your doctor if it’s okay to take baths.
- Brush your teeth at least 2 times a day. Ask your doctor which type of toothbrush is best for you to use.
- Don’t floss until your doctor tells you to. Some patients find that using a waterpik is helpful until it’s safe to floss again. A waterpik sprays water along your gums to clean them. Most drugstores sell waterpiks.
- Use an alcohol-free mouth rinse or fluoride treatment that your doctor recommends.
- Insist that family and friends living with you or visiting you wash their hands often.
- Remind visitors not to visit if they or their close contacts are sick.
Tips for controlling GVHD
Graft-versus-host disease (GVHD) happens because of differences between the donated cells (graft) and your body’s cells (host). Your new cells from your donor might see your body’s cells as different and attack them. It can begin any time after an allogeneic transplant. Sometimes patients have their first symptoms when their doctor lowers immunosuppressant medicines.
To lower your risk of GVHD or manage any GVHD:
- Take your medicines. Your doctor will give you medicine to help prevent GVHD, or treat GVHD if you have it. Take it as directed, even if you feel healthy. Call your doctor right away if you can’t take the medicine for any reason.
- Protect yourself from the sun. Exposing yourself to the sun’s ultraviolet (UV) rays increases your risk of getting GVHD. To limit your exposure to the sun:
- Avoid the sun as much as possible.
- Use an umbrella when you’re in the sun.
- Wear a hat, sunglasses, long sleeves and pants when you go outside.
- Apply SPF 50 or higher sunscreen on any skin that is not covered. You can also wear SPF clothing.
Even on a cool, cloudy day the sun is just as harmful as on a hot, bright day.
Even if you’re feeling better, be on the lookout for early warning signs of infection and GVHD. See page 5 for a list of signs and symptoms to watch for.
Some medicines used to treat infection and GVHD have side effects of their own. Your doctor will watch for and treat any side effects.
Recognize fatigue (tiredness)
Many people aren’t prepared for how tired they feel when they return home. Try not to get discouraged. Almost all transplant recipients feel tired, weak, exhausted or slow at some time during recovery.
Fatigue can affect how you feel physically, mentally and emotionally. Depending on the cause of your fatigue, there may be different treatments to help lessen it. Fatigue can last a long time and get worse if it’s not treated.
There are things you can do to try to cope with fatigue:
- Make time for activity and rest every day. But try to avoid too much rest or sleep, especially during the daytime hours. Too much rest can actually make fatigue worse.
- Plan activities that require more energy early in the day or after you have rested.
- Set a daily goal to be as active as you can. Slowly increase your activity each week.
Your energy will return gradually. Rather than comparing your progress from day to day, consider the improvements you see from one week to the next.
Make exercise a priority
It may be hard to exercise if you’re tired, but the benefits are worth it. Regular exercise can make you feel better physically and emotionally. Many people say that even mild exercise helps them feel stronger, have more energy and less fatigue, and sleep better.
Follow your doctor’s advice about what exercises are safe for you. It can help to keep an exercise journal, noting how you feel before and after exercise. You may also want to ask your doctor about working with a physical therapist.
Increase your activity level gradually. Start with small goals—like walking to the end of the driveway, down the street and back, then around your block. Pace yourself. You will need enough energy for the return trip.
Many people find they enjoy weight and strength training, stretching, yoga or aerobic activities like walking or riding a bike. Ask a friend or family member to exercise with you.
Find a routine that you enjoy and keeps you motivated. Many people who initially feel tired and reluctant to start exercising feel energized and refreshed afterward.