What to expect
You may stay in the hospital for several weeks after the transplant, where your transplant team will monitor you very closely, or you may be monitored very closely on an outpatient basis. You’ll probably feel very tired and are likely to have some uncomfortable side effects—fever, diarrhea, vomiting, mouth sores, and hair loss are common (many of these may result from the “conditioning” chemotherapy and/or radiation treatment given right before the transplant, rather than the transplant itself). Conventional wisdom from transplant docs is “expect to be admitted/re-admitted” after your transplant to help manage one or more of these side effects; don’t see it as a failure!
When your blood cell counts are low, you’ll be very susceptible to infection, so while you’re in the hospital, you will have your own room. People who come into your room will need to take precautions like wearing face masks and gloves. You’ll get medication to help prevent infections and complications and to encourage your bone marrow to regrow blood cells. You may also get blood and platelet transfusions to help prevent infections and bleeding problems in the meantime.
Once you can keep food, fluids, and medication down consistently, your temperature is normal and stable, and your blood counts have risen to a safe enough level, you’ll be able to leave the hospital with your caregiver. Your caregiver will need to be available to help you 24/7, supporting with many of the tasks of daily living, as well as looking out for any medical needs and offering emotional support.
You may need to stay near the hospital for several weeks and avoid significant travel for at least a few months after the transplant—to guard against infection risk, and to allow for close monitoring and quick treatment of any serious complications or side effects.
Infection prevention is your top priority
Your immune system will ideally continue to rebuild itself after the transplant, a process that can take several months to a year, or sometimes longer. If you had a transplant using a donor’s stem cells (an “allogeneic transplant”) you will have to take drugs that suppress your immune system for at least a few months to prevent graft-versus-host disease
. Your medical team will keep a close eye on your blood cell counts and will give you guidelines to follow to protect against infection based on your results and your specific situation.
In general, though, you should expect to make changes to your home environment, activities, and diet for at least several months to protect yourself from infection. You’ll also need to pay special attention to dental hygiene. Here are the types of adjustments to expect:
Your home will need to be kept very clean, something you’ll need help with, especially right after you leave the hospital. If you have any pets, young children, or other caregiving responsibilities, you’ll discuss this with your transplant team ahead of time and they can help you understand what kind of arrangements you’ll need to make. Pets may need to stay inside to avoid bringing germs in, and someone else will need to clean up after them—or they may need to live somewhere else until your immune system is strong enough to allow you to take care of them yourself again. There may be a period of time you are asked not to kiss young children on the lips or care for them when they are ill.
Surfaces in your home that get touched often, like countertops, doorknobs and light switches will need to be sanitized regularly. You might need to get help caring for houseplants so you don’t come in contact with the plants or soil, which can harbor microbes. You’ll also need to minimize clutter that collects dust or dirt. Your caregiver may need to wear a face mask or gloves at first when interacting with you to reduce infection risk. You yourself may be asked to wear a mask when encountering people outside your household, and you should regularly wash your hands before eating, after using the restroom, and before touching your face.
Your activities and visitors will be very restricted at first. You will need to avoid going out and especially to any high-risk places with crowds of people, like public transit, restaurants, bars, etc. You won’t be able to leave home to work or go to school for at least a few months.
You’ll also need to avoid any activities that might cause injury and infection, like gardening or playing with pets. Later, as you are able to add activities, you may need to modify them to protect yourself, by wearing protective gloves or a face mask. Over time the restrictions will ease—your health care team will give you up-to-date guidance based on how your immune system is recovering.
You may need to follow a “low-microbial diet
.” This means avoiding foods that pose an infection risk, like undercooked meat and eggs, unpasteurized dairy products and juices, and some or all raw fruits and vegetables. Sliced deli meats and fresh prepared food from the grocery store might also be off-limits. Your medical team will give you detailed instructions.
During the first few months, you might not be allowed to eat any food from restaurants. Later the restrictions will ease, but you may still need to avoid certain things, like eating from buffets, salad bars and street vendors.
You will also need to take special care with food preparation and handling to reduce the risk of illness. This means being cautious about expiration dates on food packages, avoiding cross-contamination, storing food at the proper temperatures and throwing out leftovers before there’s any risk that they’ve spoiled.
Another important aspect of your diet will be ensuring you get adequate nutrition to support your recovery. If any side effects interfere with this—like feeling sick to your stomach, mouth sores or digestion problems—you may need to add nutritional drinks to your diet. Your healthcare team will monitor your weight and should talk to you about nutrition, but if eating enough is a struggle, be sure to bring this up so you can get help with it from a registered dietician.
You’ll also need to avoid alcohol, since it can interfere with bone marrow growth and increase the risk of bleeding. It can also interact with some medications. If this is difficult for you or you want to be able to drink moderately as your recovery progresses, talk to your healthcare team.
You’re likely to get a dental evaluation ahead of your transplant. This is because dental issues and procedures can lead to infection and bleeding, and it’s important to reduce the chances of those problems happening while your immune system is weak during recovery.
After the transplant, you’ll need to take special care with oral hygiene
, to keep your mouth clean but also to be very gentle, to avoid causing bleeding, which increases infection risk. You might also need medication to treat mouth sores. A salt water and baking soda mouth rinse can help with dryness and irritation.
Your medical team will give you specific instructions for your situation. If you have gum disease, you might be told not to floss. In this case, a good alternative might be a water irrigation device to clean the spaces between your teeth. You will probably need to use an extra-soft toothbrush that you disinfect before every use, and you’ll need to replace it frequently.
Some people are given a fluoride treatment to use every day. If you have dentures, you might be told not to wear them for the first few weeks except when you’re eating. You’ll need to sanitize them before use.
If you think you need to see a dentist during your transplant recovery period, it’s important to discuss this with your transplant team. And if you have an indwelling catheter, you might need to take an antibiotic ahead of the visit as a precaution against infection. Make sure your transplant team coordinates with your dentist.
If your mouth is sensitive, dry, or sore, ask your transplant team about special oral care products that can be more comfortable. Keep your lips soft and protect against cracks with a water-based lip balm rather than petroleum jelly.
Social and emotional well-being
A blood or marrow stem cell transplant is an intense experience to go through, physically and emotionally. The lengthy recovery process can be taxing as well, especially since it requires that you have only limited physical contact with other people to stay safe from infection. It is completely normal to feel overwhelmed, fearful, depressed, anxious, bored, impatient and many other things during this time.
It’s important to care for your mental, emotional and social needs
during recovery. Take the steps you can to improve your quality of life. Even if they seem small, they can make a difference.
The restrictions on places you can go and the kind of contact you can have with others will gradually ease over time as your immune system regains strength, but it’s likely to take many months before you can have a “normal” social life. During this time, it’s a good idea to connect with people in the ways that are safely available. Video calling, social media, email and phone calls can all be important ways to maintain relationships. There are support groups you can attend online or by telephone as well. You may also want to see a counselor or psychiatrist—virtual or phone appointments may be available.
If you are struggling with your feelings, don’t hesitate to tell your health care team and ask what kinds of support are available.