Table of ContentsView AllTable of ContentsEmotionalPhysicalSocialPracticalNext in Graft-Versus-Host Disease GuideWhat Is Graft-Versus-Host Disease?
Table of ContentsView All
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Table of Contents
Emotional
Physical
Social
Practical
Next in Graft-Versus-Host Disease Guide
After undergoing the stress and physical challenges of abone marroworstem cell transplant, it can be disheartening to hear that you have been diagnosed withgraft-versus-host disease (GvHD). The complication, in which transplanted cells from a donor triggers anautoimmune-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 ofsymptoms, 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.
What Is Graft-Versus-Host Disease?
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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 thesibling 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 ownwhite blood cellsfrom 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.
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.
Engraftment in a Stem Cell Transplant
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 emotionalandphysical 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.
Even though GvHD can resolve after treatment, there are no curative approaches to GvHD per se. The treatment is primarily focused on tempering the abnormalimmune responsewhile mitigating the symptoms of GvHD wherever they occur.
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.
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:
It is important to start exercise plans slowly, ideally under the supervision of aphysical 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 withmalnutritionorobesity.
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 theBritish 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.
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.
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:
Intimate Relationships
Chronic GvHD can affect your sex life directly and indirectly. As a disease withscleroderma-like features, GvHD can cause the vagina to tighten and narrow (causing painful intercourse) and tissues in the penis to contract (leading toerectile 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).
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.
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 (includingSocial Security disability,Medicaid, andSupplemental 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 arecopay and patient assistance programsthat 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 theHealthcare.gov website.)
Insurance TipIf your medical costs are expected to be high for the year, it is sometimes better to choose a lower-cost bronze plan with a lowout-of-pocket maximumover higher-priced silver, gold, or platinum plans.
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 lowout-of-pocket maximumover 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.
There are a number of self-care tips that can help you better cope with GvHD over the long term:
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.
15 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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Lazaryan A, Weisdorf DJ, Defor T, et al.Risk factors for acute and chronic graft-versus-host disease after allogeneic hematopoietic cell transplantation with umbilical cord blood and matched sibling donors.Biol Blood Marrow Transplant. 2016;22(1):134-40. doi:10.1016/j.bbmt.2015.09.008
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National Health Service (UK).Guidelines for diagnosis and management of cutaneous graft-versus-host disease.
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What Is Graft-Versus-Host Disease?Causes and Risk Factors of Graft-Versus-Host DiseaseHow Graft-Versus-Host Disease (GvHD) Is DiagnosedHow Graft-Versus-Host Disease (GvHD) Is TreatedCoping With Graft-Versus-Host-Disease
Causes and Risk Factors of Graft-Versus-Host Disease
How Graft-Versus-Host Disease (GvHD) Is Diagnosed
How Graft-Versus-Host Disease (GvHD) Is Treated
Coping With Graft-Versus-Host-Disease
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