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.
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. Wearing it lets healthcare providers know that any blood products you receive must be irradiated. It helps protect you from transfusion-associated GVHD, in which donor cells from a blood transfusion attack your organs.
Sign up to receive a GVHD Medical Alert card
You can share this card with others who need to understand your health condition. You’ll also be sent an introduction kit with helpful GVHD information and will receive occasional email updates on other GVHD resources and insights available to you.
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.
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:
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 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.
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.
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.