After undergoing the stress and physical challenges of a bone marrow or stem cell transplant, it can be disheartening to hear that you have been diagnosed with graft-versus-host disease (GvHD). The complication, in which transplanted cells from a donor triggers an autoimmune-like assault on healthy tissues and organs, is more common than one might think.
There is really no way to know who will develop GvHD, and, unless the donor is an identical twin, anyone who receives an allogeneic (donor-to-recipient) transplant is ultimately at risk.
If faced with a GvHD diagnosis, the first and arguably most important thing to remember is that GvHD is not one thing. It can differ from one person to the next, both in the range and severity of symptoms, and even go away in some people. Even if it doesn’t, there are strategies that can help you cope and live well as you start treatment and come to terms with the diagnosis.
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Emotional
It is perfectly normal to feel angry, sad, disappointed, or scared after being told you have GvHD. The one emotion you should try to avoid is guilt and “blaming” yourself or others for the condition. The simple truth that 40% to 50% of people who undergo an allogeneic transplant will experience GvHD within the first 100 days.
Even if a sibling is the donor—and all tests say that the sibling is a match—up to half of all recipients will still experience GvHD. In the end, GvHD is not something you or your healthcare provider “caused.”
It is important to note that GVHD will often go away within a year or so of the transplant when the body starts to produce its own white blood cells from the donor cells.
With that said, there are people who will experience severe manifestations in which symptoms do not resolve. It is this uncertainty—whether something will happen or not—that can create extreme anxiety.
One of the best ways to deal with stress is to educate yourself and understand what the diagnosis actually means. Start by asking your healthcare provider:
- What tests were used, and what do they mean?
- What is the grade (severity) of my GvHD?
- What does this mean for my prognosis?
- What treatments are available?
- What is the response rate?
- What side effects can I expect?
- How long will I have to be on treatment?
- Is there anything I can do to improve the prognosis?
Some of the answers may not be easy to hear; others may be hard to understand. It often helps to have someone with you, not only for support but to take notes you can refer back to later if something is not clear.
Coming to Terms
It is also important to accept is that not every question can be answered (like “Will my GvHD go away?” or “Will my GvHD come back?”).
As distressing as the uncertainty may be, accepting that GvHD had no set course can serve to remind you that there are not only “bad” outcomes but “good” ones as well—and, more importantly, that there are steps you can take to improve your outcomes.
By understanding what GvHD is, you stand a better chance of normalizing your condition and living a healthier emotional and physical life.
If you are unable to cope, do not hesitate to ask your healthcare provider for a referral to a psychologist or psychiatrist who can provide one-on-one or group counseling. Medications are also available to treat depression or anxiety that can occur with any life-changing medical condition.
Physical
GvHD is a complex disease that varies not only by its severity but by the organs it can affect. The skin, gastrointestinal tract, and liver are most commonly affected, but the eyes, joints, genitals, lungs, heart, and kidneys can also be involved.
Even though GvHD can resolve after treatment, there are no curative approaches to GvHD per se. The treatment is primarily focused on tempering the abnormal immune response while mitigating the symptoms of GvHD wherever they occur.
Medications or medical procedures are not the only tools used in the treatment of GvHD. The prognosis is largely influenced by your health at the time of the diagnosis and what measures you take to improve your health after the diagnosis.
Exercise
Your functional capacity—a measurement of your ability to perform everyday tasks—can influence your quality of life if faced with acute or chronic GvHD. Functional capacity is not a fixed value but one that can improve with routine physical activity and exercise.
With GvHD, exercise improves cardiovascular and respiratory health, which can increase survival times, while enhancing flexibility and strength in a disease characterized by the stiffening (sclerosis) of muscles and joints.
Exercise also reduces inflammation caused by the overactive immune response, counteracts fatigue caused by GvHD and GvHD treatments, and bolsters the immune system to help ward off infection.
Although research in humans is lacking, animal studies conducted by the European University of Madrid concluded that moderate-intensity exercise following a stem cell transplant can increase survival times by as much as 54.5%.
Moderate-intensity exercise is defined as exercise that burns three to six times as much energy per minute as you would burn while sitting. Ideally, the exercise would be performed at least 150 minutes (2.5 hours) per week and involve activities like:
- Brisk walking
- Swimming
- Social dancing
- Doubles tennis
- Cycling slower than 10 miles per hour
- Gardening
It is important to start exercise plans slowly, ideally under the supervision of a physical therapist, and to increase the intensity and duration of workouts gradually.
Diet
While there are no diets that can directly influence the course of GvHD, people with GvHD who meet their nutritional needs and have normal weight will generally have better outcomes than those with malnutrition or obesity.
Diet is especially important following an allogeneic transplant. Compared to healthy individuals of the same age and sex, stem cell and bone marrow recipients need around 50% to 60% more calories and twice as much protein per day.
Although these dietary guidelines won’t help you avoid GvHD, studies have shown that poor nutrition after an allogeneic transplant is associated with higher-grade GvHD.
According to a 2013 review in the British Journal of Hematology, people with GvHD are seven times more likely to have severe grade 3 to grade 4 disease if malnourished compared to those who meet their nutritional needs.
At the same time, GvHD can often manifest with gastrointestinal symptoms like diarrhea, constipation, mouth sores, nausea and vomiting, and loss of appetite. Knowing how to deal with these symptoms can ensure that you get the nutrition you need even when symptoms are severe.
| Symptom | What to Do | What to Avoid |
|---|---|---|
| Diarrhea | Eat smaller meals. Drink extra fluids. Eat potassium-rich foods. Try a BRAT diet. | Avoid bran, whole grains, raw vegetables, fruit with seeds, caffeine, dairy, fat |
| Mouth sores | Eat a soft food diet. Cook foods until tender. Eat cool food. Drink protein shakes. Drink pasteurized juices. | Avoid spicy foods, salty food, acidic foods, dry or hard foods, crunchy foods, alcohol |
| Nausea and vomiting | Eat small, frequent meals. Nibble on crackers. Eat low-fat foods. Drink clear beverages. Eat gelatin or popsicles. | Avoid fatty foods, very sweet food, smelly food |
| Dry mouth | Use sauces and gravies. Suck on ice chips. Drink lots of clear fluids. Eat citrus fruits. | Avoid dry foods, very hot foods, alcohol |
| Weight loss | Eat small, frequent meals. Eat nutrient-dense foods. Drink milk or juice. Use protein supplements. Add milk powder to foods. | Avoid overeating. Don’t gorge on water. Limit junk foods. |
By contrast, obesity is linked to an increased risk of gastrointestinal GvHD. Although aggressive weight-loss diets are not recommended for people with GvHD due to the restriction of calories, a well-balanced diet with exercise can help improve outcomes even in those with advanced disease.
Social
Dealing with GvHD is difficult enough without having to go it alone. Support can be accessed not only from family and friends but your medical team and others with GvHD who fully understand what you are going through. It is also important to discuss intimacy issues that couples with GvHD sometimes face.
Building Support
To build a support network, choose friends and family members you can confide in and who are willing to learn about GvHD and the treatments involved. In addition to providing education, offer specific ways they can help, whether it be emotional or pitching in around the house, with shopping, or with childcare.
You should allow them to share their feelings and ask anything they need to ask. The more they understand about what you are going through, the less helpless they will feel, and the more effective they will be in offering support.
It also helps to seek support groups, either online and in-person. Hospitals that perform bone marrow and stem cell transplants often organize regular support group meetings, allowing members to share insights and advice with others living with GvHD.
If you are unable to access an in-person support group, there are a variety of online communities you can access from wherever you live. These include:
- Moderated groups: Among then, the non-profit CancerCare organization offers a free online support group for stem cell or bone marrow recipients, scheduled weekly and monitored by a certified oncologist. Registration is required, but confidentiality is assured.
- Discussion boards: A free GvHD discussion forum is available through the peer-to-peer support community SmartPatients, allowing to post questions and participate in one-on-one or group discussions. Membership is free.
- Facebook community pages: There are also numerous Facebook pages that support transplant recipients. Among the most popular is the Bone Marrow and Stem Cell Transplant Club operated by the non-profit Blood and Marrow Transplant Information Network (BMT InfoNet).
Intimate Relationships
Chronic GvHD can affect your sex life directly and indirectly. As a disease with scleroderma-like features, GvHD can cause the vagina to tighten and narrow (causing painful intercourse) and tissues in the penis to contract (leading to erectile dysfunction).
Vaginal stenosis will often improve with the daily application of emollients to the vulva. Estrogen creams and suppositories can also help in tandem with a vaginal dilator to prevent further narrowing of the vagina. In men, erectile dysfunction is most commonly treated with drugs like Viagra (sildenafil) and Cialis (tadalafil).
Arguably, the bigger concern is the loss of libido commonly experienced by people of any sex with GvHD. Although testosterone shots and medications like Addyi (flibanserin) are sometimes used to boost libido in people of any sex, depression and anxiety can undercut their benefits.
In such cases, couples counseling may be needed to address intimacy issues and explore alternative forms of sex beyond intercourse, including touch, fantasy, role-playing, and toys.
By being open and honest about sexual problems, whether physical or emotional, you can explore solutions together as a couple rather than pretending that the problem is not there. Keeping things mum only adds to the stress.
Practical
Although GvHD is anything but normal, you can gradually normalize the condition by reducing key stresses, knowing your limitations, and embracing certain practical changes in your life.
Finances
The cost of treating GvHD can be exorbitant, but it doesn’t have to place you in financial jeopardy. To relieve some of the stress of a GvHD diagnosis, speak with a financial assistance officer or social worker at your hospital or cancer treatment center about grants, subsidies, and assistance programs you may be entitled to (including Social Security disability, Medicaid, and Supplemental Security Income).
You can also call 211, a national toll-free helpline that offers information and provides referrals to health and human services in the United States.
With respect to GvHD specifically, there are copay and patient assistance programs that may be able to reduce your out-of-pocket costs for certain GvHD medications to zero. These include prescriptions drugs like:
It also helps to speak with an insurance advisor to determine what type of plan can reduce your out-of-pocket expenses. (If you access insurance through the Health Marketplace, you can contact free local advisors through the Healthcare.gov website.)
Insurance Tip
If your medical costs are expected to be high for the year, it is sometimes better to choose a lower-cost bronze plan with a low out-of-pocket maximum over higher-priced silver, gold, or platinum plans.
In the end, once your out-of-pocket maximum is reached, all remaining authorized claims for the year are fully covered. This may help you budget annual costs with less stress. An advisor can help you decide if this is the right option for you.
Lifestyle and Self-Care
If you have been diagnosed with GvHD, it is important to make a few healthy changes in your life. In addition to diet and routine exercise, you need to proactively address skin and oral health problems common in people with GvHD.
It is equally important to minimize your risk of infection caused not only by any anti-rejection drugs you may be taking but also by many of the immunosuppressants used to treat GvHD.
There are a number of self-care tips that can help you better cope with GvHD over the long term:
- Moisturize frequently: The majority of people with GvHD will have skin symptoms, including dryness, tightness, and the thickening of tissues. Frequent moisturizing with an emollient lotion is recommended, especially after bathing and before applying topical medications. Doing so may slow the progression of these symptoms.
- Avoid excessive sun exposure: UV radiation from the sun will only exacerbate skin problems in people with GvHD. To avoid this, use a high SPF sunscreen whenever outdoors, wear protective hats and clothing, and avoid the midday sun whenever possible.
- Wear loose-fitting clothes: Wearing tight-fitting clothes not only causes skin abrasion but generates heat and moisture that promotes inflammation. To keep the skin healthy, wear loose-fitting clothes made of cotton and other breathable fabrics.
- Practice good oral hygiene: Xerostomia (dry mouth) is common in people with GvHD and can lead to gingivitis and other oral diseases. You can avoid this with daily brushing and flossing as well as regular professional cleanings at least twice yearly. If you have mouth sores, gargling with saltwater lowers bacterial levels, reducing gum inflammation and the build-up of plaque.
- Get routine eye exams: GvHD can affect the eyes, causing dry eye syndrome and corneal erosion, while the long-term use of corticosteroids used to treat GvHD can lead to glaucoma or cataracts. Routine eye exams can detect these vision problems before they become severe.
- Avoid infection: Bacterial, fungal, and viral infections are among the main causes of death in people with GvHD. To reduce your risk, wash your hands regularly with warm, soapy water, and avoid touching your nose or face. You should also avoid crowds, wearing face masks whenever shopping or in public places.
- Get vaccinated: Whether you have grade 1 or grade 4 GvHD, it is important to get your recommended vaccinations, including your annual flu shot and immunizations for Haemophilus influenzae type B, pneumococci, meningococci, hepatitis A, hepatitis B, varicella-zoster virus, and human papillomavirus (HPV).
- Beware of foodborne infections: In people with advanced GvHD, foodborne bacterial infections are common and can often turn deadly. To lower your risk, avoid raw foods (including salads), wash and peel all fruits and vegetables, and thoroughly cook foods to kill potential food pathogens.
Most importantly, call your healthcare provider immediately if you have any signs of infection or illness, however mild the symptoms may be. If your immune system is suppressed, infections can worsen rapidly and, in some cases, become life-threatening.
By taking these few simple precautions—and making them a part of your lifestyle—you can keep yourself safe and reduce the stress of living with GvHD.
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