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Transitioning to home

What to expect after discharge

Once your care team decides that your blood counts are adequate and any post-transplant complications are well-controlled or gone, you’ll be discharged from the transplant center. You and your caregiver may both feel anxious when it’s time to head home and away from the round-the-clock access to your transplant team–especially if you live far away from the center. Feeling confident and comfortable with managing your care can take some time. But you should know that your care team is a call away if you have questions or concerns.

What patients can do now

Carry medical alert identification

If your transplant center hasn’t provided one, be sure to order a medical alert necklace or bracelet from your pharmacy or online. The tag should say: HSCT-IRRADIATED BLOOD PRODUCTS ONLY. You’ll need to wear this for life so healthcare providers know that any blood products you receive must be irradiated. It helps protect you from transfusion-associated GVHD, in which donor cells you receive from the transfusion attack your organs. Transfusion-associated GVHD can be fatal, so it’s essential to keep this alert identification with you at all times and make sure your caregivers are also aware of your potential risk from a blood transfusion.

Take steps that may lower your risks for GVHD

  • Protect against infection.
    Your immune system can take up to a year to recover after stem cell transplant. So be sure to strictly re-read and follow all the guidelines your transplant team recommended to help you steer clear of infection. Your team will check your blood cell counts regularly even after transplant to continually monitor your immune system recovery along the way. Preventing infections may also help to lower your risks related to GVHD.
  • Protect yourself from direct sun.
    Exposing yourself to the sun’s ultraviolet (UV) rays may increase your risk of developing GVHD or experiencing a flare-up of symptoms. Use a sunscreen with SPF 30 or higher when you go outside, and reapply it often, even on cool or cloudy days when sunlight can still be harmful. If you’ll be in direct sunlight for longer than 20 minutes, wear a protective hat and long sleeves and pants made of cotton.
  • Take your medicines exactly as prescribed.
    Once you go home, you’ll continue to take several medicines for awhile, including some to help prevent or treat GVHD. Take care to stay on track with all your prescribed doses, even if you’re feeling better. Consider using a diary or mobile app to track them (See our Resources section for some options). And let your care team know how you’re doing along the way.
Image of a healthcare professional working on a notepad

Sign Up to Receive a GVHD Medical Alert Card

You can share this card with new healthcare providers, pharmacists, and others who need to understand your health condition. You’ll also receive occasional email updates on other GVHD resources and insights available to you.

Image of a healthcare professional working on a notepad
Image of a healthcare professional working on a notepad
Image of a man typing on his phone
Image of a man typing on his phone

Download the Printable GVHD Symptoms Watchlist

Keep this list for easy reference. It may help you watch for new chronic GVHD signs and symptoms, so you can take quick action. Be sure to call your transplant team right away if you notice any! The list includes fillable spaces for adding your center’s contact information.

The uncertainties about who will get GVHD and the course that it will take if you experience it is a difficult challenge. But this can be a manageable complication, so don’t wait to call your center if you notice anything.

—Paul Larson, Oncology Clinical Nurse Educator, Incyte Corporation

What caregivers can do now

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Be a second set of eyes

Be sure to monitor your loved one for any new or changing symptoms of GVHD—especially in areas like the back or the eyes, where patients may not notice their symptoms right away. Quick action is essential since acute GVHD in particular can progress quickly.

Help stay on track with medicines

Patients often take a lot of medicines after stem cell transplant. To make sure your loved one stays on track with them—and to ensure other caregivers can easily monitor them if needed—create a list or spreadsheet. Or try a mobile tracking app. See our Caregiver Resources page for options.

It may help to order the medicines by time of day when each dose should be taken, so you can check them off. Include information such as:

  • Medicine name and dose
  • When to take it
  • Any other instructions on how to take it (eg, with food)
  • What it looks like
  • Prescribing doctor
  • When it needs refilling

If it helps, set alarms for when medicines need to be taken. And find a pillbox that works for your loved one’s regimen – ideally with morning and night compartments.

Sticking to the treatment plan and maintaining a record you can bring to healthcare visits is important!

Be sure to take care of yourself

Helping someone through their transplant journey is an enormous act of love. But it can also be difficult and demanding at times, especially if you also work or take care of other family members.

Be sure to find time and space for things you enjoy. Have someone, a good friend or relative, who will listen and encourage you to care for your well-being. Then, take a deep breath and force yourself to ask for and accept help, until you feel comfortable with it. It’s a sign of strength, not weakness. And it will make you a better caregiver in the long run.

Check out our list of caregiver resources for additional help.

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Remember: you must consistently take care of yourself if you want to maintain the physical and mental energy to take good care of your loved one.