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It may help you have better conversations with your care team and get the GVHD information you need along the way.
Intended for US residents only
Intended for US residents only
During the hospital stay: What happens after the transplant?
During the first few weeks after transplant, you’ll likely feel heavy fatigue and other effects of the procedure and preparation treatments. Your care team will help you manage these. They’ll also monitor you closely for signs that your transplanted stem cells are beginning to produce healthy new blood cells (known as engraftment). This can take about 2 weeks, but this may vary depending on your disease and treatment. In the meantime, you’ll likely remain in the hospital, where your team will help manage your symptoms and watch for complications, such as infection or graft-versus-host disease (GVHD).
Your care team takes various steps to reduce your chances of GVHD, as well as infection, since your immune system is severely weakened just after transplant.
What patients can do now
Help protect yourself from infection
While your care team will take steps to help you avoid an infection, you should be vigilant as well, especially about informing prospective visitors. Infections after a stem cell transplant can be serious and also increase your risk for developing acute GVHD.
Here are some tips to share with visitors:
- Avoid sending live plants or flowers
- Don’t visit if you’ve been sick or recently in contact with anyone who has a contagious condition. Consider a phone call or virtual visit instead
- Wash your hands and wear a mask while visiting
- Ask if it’s okay to bring any snacks or other food into the hospital
- Be extra careful about child visitors who may not understand the need for infection control
Talk openly with your care team
While your care team will monitor you closely, it’s important to speak openly about any discomfort or other symptoms you’re experiencing after transplant. Many of these can be managed, but your team relies on you to let them know what you’re experiencing right away. Early symptoms of acute GVHD, for instance, can be subtle but progress quickly. So be on alert, and speak up. If you’re struggling with any troublesome emotions, such as worry or stress, mention these as well. Your care team likely includes a social worker who can offer help and support as well as practical advice and resources to help with concerns you may have now.
Here are some questions you may also want to ask your team during your in-hospital recovery:
- What signs and symptoms of GVHD should I watch for?
- What treatments am I taking now, and what are they for? (Be sure to record these in the Treatment Diary you should keep along the way to share with other care providers later on!)
- How will my transplant team communicate with my primary care provider so everyone is in the loop?
- What should I do now to be well prepared when it’s time to go home?
Restart some basic routines and physical activity
Create a regular regimen of basic activities for your day. For example, get dressed and make your bed in the mornings. Do some reading or journaling every afternoon after lunch. Watch a program or make calls in the evenings. Re-establishing daily rhythm and routine can be helpful. Once you’re able, a little daily exercise may also help your recovery. Stationary bikes are available at some transplant centers, or you can walk the hallways on your floor to help begin rebuilding strength and stamina. Ask your care team what they recommend and what’s available to you.
Talk openly with your care team
While your care team will monitor you closely, it’s important to speak openly about any discomfort or other symptoms you’re experiencing after transplant. Many of these can be managed, but your team relies on you to let them know what you’re experiencing right away. Early symptoms of acute GVHD, for instance, can be subtle but progress quickly. So be on alert, and speak up. If you’re struggling with any troublesome emotions, such as worry or stress, mention these as well. Your care team likely includes a social worker who can offer help and support as well as practical advice and resources to help with concerns you may have now.
Here are some questions you may also want to ask your team during your in-hospital recovery:
- What signs and symptoms of GVHD should I watch for?
- What treatments am I taking now, and what are they for? (Be sure to record these in the Treatment Diary you should keep along the way to share with other care providers later on!)
- How will my transplant team communicate with my primary care provider so everyone is in the loop?
- What should I do now to be well prepared when it’s time to go home?
Did you know?
Some transplant centers now create personalized survivorship care plans for their patients before they leave the hospital. These plans include:
- your complete medical and treatment history from before transplant to after transplant
- information about your unique health issues and needs to be aware of after transplant
- detailed recommendations for your long-term healthcare, including what exams and tests are needed, how often, who will provide the follow-up care visits, and what issues should be closely followed
- guidance on how information should be communicated among your various healthcare providers
A recent study comparing patients after transplant found that those who received survivorship care plans reported significantly less anxiety and better quality of life. Ask your transplant team if they’ll prepare a plan for you.
I had GVHD, a head to toe rash, not long after leaving the hospital. And I still have some skin and mouth GVHD two years later…. I try to stay positive, focus on today and tomorrow, bringing joy to people’s lives and finding joy in mine.
Josh O.
2018 transplant recipient
What caregivers can do now
Do a good house cleaning
Since infection risk remains high for several months after transplant, your loved one will need extra protection at home against common household germs, mold, and mildew. Just before their return is a good time to tackle this chore. This is a perfect time to ask your support team for help!
- Focus on cleaning rooms and areas where your loved one will spend the most time.
- Thoroughly vacuum and dust all rooms.
- Thoroughly clean the bathroom and kitchen.
- Get under things, especially appliances.
- Replace filters in your air conditioners and heaters.
- Wash sheets and towels your loved one will use.
- Consider bathing your pets.
- Try to houseclean regularly.
Get prepared
Now is a good time to:
- Create a caregiver’s binder. Include folders for storing handouts, paper for notes and questions for the care team, and a calendar for tracking appointments.
- Share a health update with friends and family. Send a group email or create a free website, like CaringBridge or MyLifeLine, which lets you invite people to read your news posts, send notes, and even coordinate help as needed.
- Recruit your team of supporters. Many of your family members and friends are likely eager to help, so reach out now to let them know you’ll be happy to accept it. Perhaps ask how they’d like to help or even share a list of tasks for which they can sign up using a site like LotsaHelpingHands. Remember: trying to do it all will lead to burnout. Accept help knowing it’s good for everyone!
- Connect with other caregivers who can help you understand what to expect and share advice and tips for managing things. Explore caregiver connection resources here or read stories and advice from caregivers who’ve been there.
Attend the discharge training sessions
Before your loved one is released from the hospital, nurses and other staff members typically provide education about their medicines, complications to watch for, dietary needs, and more. As a primary caregiver, your role in managing these is essential and can make a difference in your loved one’s recovery!
Different centers handle this training differently, so be sure you know what to expect ahead of time so you can plan accordingly. Take advantage of any special caregivers-only sessions that some centers offer. They can provide valuable tips on managing new tasks or challenges you may not anticipate. These sessions can also be good opportunities to ask questions or connect with other caregivers.
Get prepared
Now is a good time to:
- Create a caregiver’s binder. Include folders for storing handouts, paper for notes and questions for the care team, and a calendar for tracking appointments.
- Share a health update with friends and family. Send a group email or create a free website, like CaringBridge or MyLifeLine, which lets you invite people to read your news posts, send notes, and even coordinate help as needed.
- Recruit your team of supporters. Many of your family members and friends are likely eager to help, so reach out now to let them know you’ll be happy to accept it. Perhaps ask how they’d like to help or even share a list of tasks for which they can sign up using a site like LotsaHelpingHands. Remember: trying to do it all will lead to burnout. Accept help knowing it’s good for everyone!
- Connect with other caregivers who can help you understand what to expect and share advice and tips for managing things. Explore caregiver connection resources here or read stories and advice from caregivers who’ve been there
Stay up-to-date on GVHD insights and resources
Sign up for occasional email updates and get a GVHD Medical Alert card you can share with new healthcare providers, pharmacists, and others who need to understand your health status.
