Intended for US residents only
Intended for US residents only
Each person’s experience the first year after stem cell transplant is different. But, no matter what, the road to recovery is very gradual for everyone. Expect more of a marathon than a sprint. It can take a year or more for the immune system to recover in the best of cases. And, if you’re managing GVHD, it can take even longer because of the symptoms and immune-suppressing medicines needed.
You’ll likely experience ups and downs, both physically and emotionally, the first year. It can also feel frustrating not to be able to get back to all the things you used to do as quickly as you may like. Try to be patient and take it day by day. Listen to your body, and rest as you need to. Celebrate the little wins and moments. And lean on your loved ones, your care team, and even your community of other transplant survivors to help keep you moving forward and your spirits up.
Risks for acute and chronic GVHD are highest during this first year after transplant. Pay close attention to any new or changing symptoms you notice, even if they seem minor, and contact your transplant team if you notice any.
Managing GVHD often requires trying different therapies over time. So it’s important to keep your team informed of any new or worsening symptoms, so they can adjust or change your medicines as needed.
Download the GVHD Symptom Watchlist to help you and your caregiver monitor for all possible signs and symptoms.
After the flurry of frequent medical appointments you’ll make in the first few months after your stem cell transplant, you may have major post-transplant checkups at 6 and/or 12 months.
Be sure to arrive well-prepared to share information, get answers to your questions, and receive the advice and support you may need.
Download our Doctor Discussion Guide to help you prepare for these milestone visits.
After transplant, and especially if you have GVHD, it’s important that everyone taking care of you understands your medical history and unique care needs.
To make sure all your healthcare providers are on the same page:
Not all healthcare providers are familiar with the special care needs of people who’ve had a stem cell transplant or who are managing GVHD. It’s important to help them get informed before they care for you!
You can share this card with others who need to understand your health condition. You’ll also receive an introduction kit with helpful GVHD information and a notepad for tracking any symptoms or questions you want to discuss with your care team, as well as occasional email updates on other GVHD resources and insights available to you.
After transplant, and especially if you have GVHD, it’s important that everyone taking care of you understands your medical history and unique care needs.
To make sure all your healthcare providers are on the same page:
Not all healthcare providers are familiar with the special care needs of people who’ve had a stem cell transplant or who are managing GVHD. It’s important to help them get informed before they care for you!
I live 8 hours from my transplant center, so when I had to transition home and back to my original doctors, I was scared about my care. Thankfully, it’s turned out great. The transplant center has a lifetime follow-up care team, and my doctors have been in constant contact with them to ask questions, talk about test results, everything. Feeling confident that your medical team knows what they’re doing is a really important part of recovery.
Linda S.
2017 transplant recipient
The first year after stem cell transplant can involve a lot of challenges as well as major changes to normal roles and routines. It can be tough both physically and emotionally—for you, the patient, and your family. Good days and bad days are to be expected. But when depression or anxiety becomes a problem, persisting for more than a couple of weeks, it’s time to seek professional help.
Counseling services are often available to patients and their families through the transplant center. Or you can ask a primary care provider for recommendations in your area.
These conversation starters can help you or your loved one if it feels hard to bring up the subject:
With your doctor:
With your loved one:
Your to-do list may be filled with a whirlwind of appointments, chores, calls, and other tasks you need to tackle each day as a caregiver and perhaps as a parent and employee as well.
When you’re feeling overloaded, remember that you can also offer meaningful support to your loved one just by spending time with them. Your presence, even just sitting close by, sends a powerful message of love and support. Sometimes, that simple gift is what’s needed most.
Tap into support resources
I need help with……
Advocacy groups and other organizations offer a wide array of support services and resources for patients, caregivers, and families managing after a stem cell transplant.
Empower yourself with knowledge and support
Sign up for a GVHD introduction kit and occasional email updates about GVHD insights and resources that are available to you. You’ll also receive a personalized GVHD Medical Alert card to share with others who may need to know about GVHD.