One rare and unfortunate side effect of a stem cell transplant is graft-versus-host disease (GVHD). In this condition, the graft (stem cells from a donor) attacks the host (your body’s own cells). There are two main types of GVHD — acute GVHD may occur in the first 100 days after a transplant, and chronic GVHD may occur anytime within the first two years after a bone marrow transplant.

If you or a loved one has GVHD, it’s important to be seen by a physician who has experience treating this serious condition. How do you find these doctors, and what are important considerations in your healthcare search? Here, we highlight seven tips to help guide you through the process of finding and working with a GVHD care team that’s right for you.

1. Learn About GVHD Treatment

If GVHD is left untreated, the risk of serious medical complications, including life-threatening ones, increases. Luckily, good quality treatment can improve your health in the short and long term. Treatment should be started as early as possible after symptoms begin for GVHD and can last up to three years. In some cases, treatment may be required for a longer period of time.

Most doctors treat GVHD with immunosuppressant medications (drugs that suppress the immune system). First, doctors will try steroids. If that doesn’t work, they’ll try different therapies, such as biological therapies, which often use antibodies (a type of immune cell) to help the body fight disease. Some of these medications are administered as intravenous (IV) infusions, which will require you to go to a healthcare facility to receive them.

Other therapies can be used to treat specific symptoms that you have. For example, if you’re dealing with gastrointestinal (digestive) symptoms, you may be prescribed medications to treat nausea, vomiting, and diarrhea. If you have severe skin changes, your doctor may recommend topical creams or ointments or light therapy.

2. See Your Transplant Doctor

Graft-versus-host disease is a condition that affects many parts of the body, from the eyes to the genitals. Because of this, the doctors that you see may differ based on your specific symptoms. However, all people with GVHD should see a transplant doctor, who is usually a hematologist/oncologist (blood and cancer doctor). These are doctors who have completed a residency in internal medicine (general medicine) and a fellowship in hematology and oncology. This is different from a transplant surgeon, who transplants solid organs like kidneys and hearts.

If you have GVHD, chances are that you already have a transplant doctor who managed your stem cell transplant for a disease like leukemia or lymphoma. This is a great doctor to talk to if you have questions about diagnosing and treating GVHD.

3. Ask for a Referral

Not all transplant doctors specialize in GVHD. For the best care, try to find a doctor who specializes in this unique condition. If your transplant doctor doesn’t feel comfortable treating GVHD, they may be able to connect you to someone who is. The easiest way to get connected to a GVHD doctor near you is to get a direct referral from your transplant team.

If you get a referral to a specialist, make sure to call ahead to make an appointment and ensure that they take your health insurance. Consider location, as you may need to follow up with your providers closely for months or years. While community cancer or transplant centers may be easier for you to get to, they may not have the same resources and specialists as National Cancer Institute (NCI) designated cancer centers.

Your first GVHD doctor may not be the only one that you end up seeing to treat your condition. If you feel that you’re not receiving the best possible care or that you require additional medical advice, don’t be afraid to ask for a second opinion.

4. Search Online Databases

If your team can’t refer you directly, you may have to search for a provider on your own. On websites like the Blood & Marrow Transplant Information Network, you can search directly for a GVHD provider by symptom and location. Physician types include transplant doctors, who manage all of the symptoms of GVHD, as well as subspecialists like:

• Oncologists (cancer doctors)
• Hematologists (blood doctors)
• Dermatologists (skin doctors)
• Ophthalmologists (eye doctors)
• Orthopedics (bone doctors)
• Pulmonologists (lung doctors)
• Rheumatologists (autoimmune disease doctors)
• Gastroenterologists (digestive system doctors)

Whenever searching for a doctor online, read reviews to see what others thought. Check with your insurance company to confirm that they cover these providers. It’s easiest when all of these specialists are housed within the same facility or network, such as a cancer treatment center or transplant hospital, so that your medical records can be accessed easily by everyone.

5. Build a GVHD Team

Physician specialists are not the only people who should be on your graft-versus-host disease medical team. Other nonphysician providers you might consider adding to your team include:

• Dentists to help treat any gum and tooth symptoms
• Physical therapists to assist with mobility concerns
• Optometrists to address eye complications
• Case managers or social workers to help with administrative and financial concerns
• Therapists and counselors to help with the mental health effects of living with GVHD
• Support groups of other people living with GVHD

Graft-versus-host disease can be a complex issue, especially if your case is severe or doesn’t get better immediately. Having a strong healthcare team behind you can help improve your health and overall quality of life.

6. Follow Up Regularly

Once you get connected to your GVHD medical team, make sure to take your medications as prescribed, return to follow-up appointments as recommended, and follow provider guidance on lifestyle changes. Your team will monitor all aspects of your health as you recover from this condition and work to prevent any further complications.

7. Report Any New Symptoms

If you are experiencing symptoms of GVHD, such as fevers, diarrhea, nausea, vomiting, rash, or jaundice (yellowing of the skin and eyes) after getting a stem cell transplant, see a healthcare provider right away. A healthcare provider who understands your medical history can help refer you to specialists who can best treat your condition. They can share your medical history and communicate directly with the other members of your healthcare team.

Talk With Others Who Understand

On myGVHDteam, the site for people living with graft-versus-host disease and their loved ones, people come together to better understand life with GVHD.

Have you been diagnosed with this complication of stem cell transplant? Where did you go for your medical care? Share your experience in the comments below.