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Intended for US residents only
Intended for US residents only
Pre-transplant: What happens before stem cell transplant?
Your transplant team will take various steps that may help lower your risks for GVHD. A day or two before transplant, patients receive certain medicines that “tamp down” or suppress the immune system. That makes it harder for the donor cells to attack your organs and tissues and cause GVHD.
New ways to help prevent GVHD are a major area of research today, so your team may also recommend other pre-transplant steps that may help lower your risks.
What patients can do now
Choose a transplant center wisely
Your choice of transplant centers can make a difference in the care and attention you receive during your transplant and in the months after, when you may be managing GVHD. Ask your referring doctor which center he or she recommends and why. Or ask: Which center would you choose if you needed a stem cell transplant? Take time to weigh your options and make a choice that’s right for you. These steps can help:
- Find out if your insurance plan limits you to certain transplant centers.
- Be sure any center you’re considering is accredited by the Foundation for Accreditation of Cellular Therapy. This organization inspects and certifies transplant programs based on quality of care. Transplant centers aren’t required to have this inspection or accreditation.
- Consider the transplant center’s location. A high-quality center close to home can make it easier to stay in touch with your care team and to return for follow-up care you’ll need after transplant. But don’t rule out centers that are not nearby. Many patients and caregivers rent short-term apartments near their transplant centers. Financial assistance options for housing and travel expenses may be available to you.
- Visit the transplant centers you’re considering and/or schedule a meeting in person or by phone to talk with care team members. Most transplant centers are happy to arrange these meetings. Be sure to ask about their experience with your condition and their specific management approach before, during, and after transplant. Different centers may recommend different approaches, so take notes to compare later.
- Ask about the center’s long-term follow-up care approach. How will they handle your need for ongoing medical care, referrals to other specialists who understand GVHD (if needed), and post-transplant support needs for you and your loved ones?
- Ask if the center has an established “survivorship care” program. These programs or centers offer a breadth of helpful services and a well-coordinated team approach to your long-term care after stem cell transplant.
- Be clear about how the center’s care team will coordinate with your primary care physicians, especially if a center is far from home. Good and timely communication among all your care providers is essential!
- Ask if it’s possible to speak with patients who’ve experienced a transplant at any center you’re interested in.
Talk to your transplant team about GVHD
Getting informed about your individual situation upfront can help you feel more in control. Some questions you may want to ask now include:
- What are my specific risks for GVHD?
- What can we do to lower my risk?
- What are the side effects of any treatments you use to help prevent GVHD?
Start a treatment diary
After transplant, your network of healthcare providers may expand beyond your transplant center. To make sure any new providers understand your health history, it’s a good idea to have a detailed record of all your treatments and medicines, past and current. This is the time to start that diary. You can use a heavy-duty notebook or create a record on your computer or smartphone. For each treatment, be sure to include:
- Treatment name, plus dosage (if applicable)
- What it was prescribed to do
- Date you started it and, when applicable, dates you change or discontinue it
- Notes about any effects you notice
Be sure to bring your treatment diary with you to any healthcare visit, and especially if you need care from a new healthcare provider. You might even offer to share it ahead of a first appointment. Not all care providers are well-informed about GVHD or stem cell transplants. And patients, especially with GVHD, often cycle through a number of different medicines along the way. So this is important information to share.
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
Learn all you can
Now is the best time to get informed about GVHD and other issues you may need to help your loved one manage after transplant.
- Learn what GVHD is and what to watch for
- Plan to attend all doctor visits with your loved one, even during their hospital stay, and ask questions freely. As a caregiver, you’re an important partner for your loved one’s care team, so they want to help educate and prepare you.
- Start a notebook to record what you hear, and create a folder for important paperwork you receive, so everything is one place. It’s easy to forget important points after a visit.
- Connect with other caregivers and families now to learn about what to expect and prepare for. Ask about opportunities at the center, or explore caregiver support programs.
Plan ahead for work and money matters
As a caregiver, you may need to assume more responsibility for managing household finances, at least for awhile. Now is the time to be prepared.
- Find out what your loved one’s insurance will pay for and what out-of-pocket costs are involved, so you can help plan for these.
- If you have concerns, seek out the transplant center’s social worker or financial counselor. These professionals can help you address personal finance and job issues and understand various options available to you to manage transplant expenses.
- Recognize that the post-transplant period can be hard to predict, especially if challenges like GVHD occur. This is a good time to explore options, like extended time-off via the Family Medical Leave Act (FMLA), unpaid sabbaticals or leaves of absence, or even vacation-donation programs that some employers offer. Your employer may also be willing to work with you on creating a reduced or flexible work schedule. Contact your manager or the human resources (HR) person or department early to discuss options. Note that patients may need to be away from work for about 6 months and you should make similar plans.
- As your routine changes, be sure to keep up with paying bills and keeping your insurance coverage active.
Build your support team NOW
Caregivers often think they can go it alone with managing all the extra tasks after a loved one’s stem cell transplant. But that can lead to early distress and burnout, which isn’t good for anyone.
A good exercise is to jot down all the things you’ll be responsible for while your loved one recovers in the months ahead. Then, reach out to friends, family, neighbors, and even your faith community to see who may be willing to help. Consider sending a group email. Many will no doubt welcome the chance to lend a hand. And, by confirming their support now and ways they’d be willing and able to help, you’ll feel more comfortable reaching out as needed.
Here are some of those daily tasks to keep in mind:
- Meal preparation
- Grocery shopping
- Childcare
- Dog walking
- Driving to appointments
- Staying with your loved one when you need to go out
- Running other errands (post office, pharmacy, hardware store, etc)
- Yard work
Plan ahead for work and money matters
As a caregiver, you may need to assume more responsibility for managing household finances, at least for awhile. Now is the time to be prepared.
- Find out what your loved one’s insurance will pay for and what out-of-pocket costs are involved, so you can help plan for these.
- If you have concerns, seek out the transplant center’s social worker or financial counselor. These professionals can help you address personal finance and job issues and understand various options available to you to manage transplant expenses.
- Recognize that the post-transplant period can be hard to predict, especially if challenges like GVHD occur. This is a good time to explore options, like extended time-off via the Family Medical Leave Act (FMLA), unpaid sabbaticals or leaves of absence, or even vacation-donation programs that some employers offer. Your employer may also be willing to work with you on creating a reduced or flexible work schedule. Contact your manager or the human resources (HR) person or department early to discuss options. Note that patients may need to be away from work for about 6 months and you should make similar plans.
- As your routine changes, be sure to keep up with paying bills and keeping your insurance coverage active.
Stay up-to-date on GVHD insights and resources
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