First Year After Stem Cell Transplant Recovery | GVHDnow

First year after transplant: What should I be aware of?

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.

What patients can do now

Continue to watch closely for new or changing GVHD symptoms

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.

Make the most of your healthcare visits

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.

Make sure your transplant team and other healthcare providers are connected

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:

  1. Ask your transplant doctor early about how they will communicate with your primary care provider.
  2. Ask your primary care provider if he or she is in touch with your transplant team and how they communicate.
  3. If you need specialty care—such as a dentist, dermatologist, or eye specialist—contact your transplant center first to see if they can recommend someone near you who is familiar with stem cell transplant and GVHD. If not, ask if they can consult with your own specialist to make sure they’re informed about how to care for you.
  4. If you must visit a new healthcare provider or facility, be sure to let them know upfront that you’ve had a stem cell transplant in the past year. Bring along:
    • Your treatment record and list of current medicines
    • Your transplant center’s contact information
    • Your GVHD Medical Alert card if you have one

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!

Image of a patient handing a GVHD alert card to a healthcare professional

Sign up to receive a GVHD Medical Alert card + more!

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.

Make sure your transplant team and other healthcare providers are connected

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:

  1. Ask your transplant doctor early about how they will communicate with your primary care provider.
  2. Ask your primary care provider if he or she is in touch with your transplant team and how they communicate.
  3. If you need specialty care—such as a dentist, dermatologist, or eye specialist—contact your transplant center first to see if they can recommend someone near you who is familiar with stem cell transplant and GVHD. If not, ask if they can consult with your own specialist to make sure they’re informed about how to care for you.
  4. If you must visit a new healthcare provider or facility, be sure to let them know upfront that you’ve had a stem cell transplant in the past year. Bring along:
    • Your treatment record and list of current medicines
    • Your transplant center’s contact information
    • Your GVHD Medical Alert Card if you have one

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!

Image of Linda S.

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

What caregivers can do now

Watch for signs of depression or anxiety

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:

  • “I haven’t been feeling like myself lately. I’m concerned that I may be depressed or overly anxious.”
  • “What can I do so I don’t feel like this all of the time?”
  • “My friend told me she’s worried about me and wondered if I was depressed.”

With your loved one:

  • “You’ve seemed more down/anxious lately. Can we talk about it?”
  • “It’s okay to ask for help. Your doctor would want to know about these feelings you’re having so she can help you.”
Image of a man and a woman laying on a sofa together

Give the gift of presence

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……

  • Talking to my employer
  • Traveling to the transplant center
  • Managing stress
  • Finding someone to talk to
  • Affording care

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.

Explore our community and support resource library
Image of a woman, outside and smiling
Image of a woman, outside and smiling

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.