Living with Chronic Illness, Living with Graft-versus-Host Disease

Living with graft-versus-host disease (GVHD) affects one's physical, emotional and spiritual well-being

Presenter:  Mimi Mahon PhD, CRNP, FAAN, FPCN, Pain and Palliative Care Servce, National Institutes of Health Clinical Center

Recorded October 12, 2019 at the National GVHD Patient Summit

Presentation: 30 minutes


Graft-versus-Host Disease impacts a patient’s physical, emotional and spiritual quality of life. Caregivers of GVHD patients’ lives are also affected. A strong support team and setting realistic goals can improve quality of life while living with GVHD.


  • GVHD is many different diseases, and each patient’s experience with GVHD is different
  • Social support is important while living with GVHD, but friends are often not supportive for the long haul
  • Acknowledge that life is different with GVHD, but try not to let it rule your day

Key Points

04:16     What’s more important than clinical measures of GVHD is the impact GVHD has on quality of life

06:27     It’s not just the GVHD disease that causes trauma, but how an individual’s mind and body and one’s social group reacts to it

08:24     For some people, having a therapist to help them through this trauma is extremely helpful

09:38     Some people with GVHD, and their family caregivers, experience symptoms of post-traumatic stress disorder (PTSD)

14:43     GVHD is a constant presence, but we can make choices about how it fits into our daily routine 

16:27     Know your physical and emotional limits, and set realistic about goals

19:12     Find your tribe – people you know you can count on when times get hard

21:50     Doing your best to recover does not mean meeting someone else’s standards about how you should live 

26:11     Palliative care can be very helpful for stem cell transplant survivors

28:28     Go to a medical provider for Reiki or acupuncture, not your local spa 

Transcript of Presentation

00:00     Speaker Introduction:  I would now like to introduce our keynote speaker, Dr. Mimi Mahon. Dr. Mahon is a Nurse Practitioner in Pain and Palliative Care at the National Institutes of Health in Bethesda, Maryland where she works with many patients who have graft-versus-host-disease. She previously worked at the University of Pennsylvania, the University of Maryland and other healthcare institutions.

She has taken care of people with acute and chronic graft-versus-host-disease in both community and academic hospitals. Her greatest teachers, she says have always been her patients and their families. Dr. Mahon started her career in pediatrics and later began working primarily with adult patients. For many years Dr. Mahon was a regular guest on a children's radio show where they discussed topics such as living with cancer, what did 9/11 mean for children, and what is HIV AIDS?

Dr. Mahon hails from Chicago, so she's grateful to be back home close to Lake Michigan and the Chicago Bears. She is, however, a huge fan of the Philadelphia Eagles, which we will forgive for the day. Please join me in welcoming Dr. Mahon I

01:25     [Dr. Mahon]: I want to take a second to thank Susan and her team. They have done such an unbelievable job putting this together and they've worked, I'm going to say more than a year on it. So a special thank you to Susan and Michala and everybody else with the green badges and the others, so thank you to them. I have toys and I'm not supposed to play with the laser pointer but I might just have to.

01:55     Overview of presentation:  What I want to talk about briefly today is GVHD as a physical condition with more than physical dimensions. One of the ways I wanted to approach this is to talk briefly about GVHD as a trauma, and then living with it as an adaptation to a trauma.

I want to talk about again, as Susan said, what patients have taught me and how that might help you, but I have to tell you there's a guy back there, Richard, who already has all the answers. So if you get to talk to Richard, that man is living well.

And then I want to talk about palliative care, which is what I do and the first message is palliative care is not end of life care. Palliative care is about how you live. So, that's where we'll go today.

02:40     Cancer is like a roller coaster ride:  Susan had quotes up earlier from patients and one of them said exactly what I'm about to say, and I promise I'm not plagiarizing her, but cancer is a roller coaster. The bad news is you have cancer. The good news is we probably can cure you.

Then you'd have the treatment with the statements like no evidence of disease, no evidence of growth, 2% decrease, and it's our own language in healthcare that we do to make us be the cool kids.

Then there's the relapse. And then we have another chance for cure, and then you have conditioning and treatment, which in and of themselves are not especially fun.

Then you're engrafting, you're going home and you think, "Okay, I've made it." And then two or 12 or 16 months later, this rash starts, or these mouth sores develop, or your joints get sore and it's kind of welcome to the world of GVHD.

03:40     Like cancer, GVHD is not just one disease. It can be a disease of skin or gut or liver or mouth or eyes or lungs or joints or soft tissue or connective tissue or anything else. But if it's a disease of skin, do you have Poikiloderma? Do you have... I learned words doing this stuff. It's really fun. Do you have Poikiloderma? Do you have scleroderma? Do you have rash? So it's difficult even to have sometimes your providers understand because there are so many things that constitute GVHD and no two people have exactly the same disease.

04:16     What’s more important than clinical measures of the disease is the impact GVHD has on quality of life:  Lori Wiener is a researcher and therapist at the NIH and she's done some really wonderful work in this area. And what she said is, "Whether someone lives, or how long someone is on treatment for chronic GVHD is often used to describe GVHD. However..." And I think this is really important. "However, quality of life is the better sign of disease burden than the actual disease itself." The other thing that's really fun about Lori's research is she has some marvelous descriptors from some of the people she interviewed, skin is bumpy, mouth burning, white bumps that you can't pop in your mouth or a tickle in the throat. That's GVHD. It's not the polysyllabic words that we in healthcare believe are really important.

05:06     GVHD affects not just the body, but emotions and spirit:  So GVHD affects your body, but not only your body. Cancer is more than a physical disease and GVHD is more than a physical disease. So as we are talking about it, I want to consider a trauma model. For some people... Sorry, I'm not doing well with my notes here. For some people, the experience of cancer, including the experiences of GVHD are actually traumatic. Not just "I don't feel well" but a trauma that affects people over time. I love this definition. Trauma is an emotional response to a terrible event.

Longer-term reactions include unpredictable emotions, flashbacks, strained relationships, and even physical symptoms like headache or nausea that are not due to the GVHD but are due to the trauma sustained by the GVHD. All of these feelings are normal, but a lot of people don't understand that all of these feelings are normal, but some people have difficulty moving on with their lives. "Can I order a replacement body? This one is constantly malfunctioning."

06:27     It’s not just the GVHD disease that causes trauma, but how an individual’s mind and body and one’s social group reacts to it.  There's a wonderful therapist who used to be at the NIH who left us to go into private practice. His name is Schuyler Cunningham. And Schuyler has done really wonderful work with trauma theory and providing therapy to people using a trauma model. Schuyler has introduced me to his work by a number of therapists in the area. And Dr. Bloom said, "It is not the trauma itself that does the damage." That is, it's not just the cancer and the GVHD that do the damage. "It is how the individual's mind and body react in its own unique way to the traumatic experience in combination with the unique response of the individual social group."

That's really important. So there is the disease and then there is how your mind and spirit react to the disease. But then also sometimes underplayed as a mediating effect is, how are the people around you reacting? How is the fact that you have this disease, that's supposed to mean that your big disease has gone, affecting how you live your life and your relationships?

Dr. Van der Kolk said, "Traumatic experiences can leave indelible emotional memories."

So in living with GVHD you've got the "what people see" part and then you have the "what people don't see" part. And that's almost the more difficult part because how do you choose, and I'm going to say choice. How do you choose to deal with the part that other people don't see? Is it something that you have to keep inside of you or are you fortunate enough to have a cadre of people with whom you can share the challenges and the joys and the frustrations? Again, being a Chicago Bears football fan, you know the challenges and the joys and the frustrations. Although this year they are not doing badly but I'm not going to jinx it.

08:24     For some people, having a therapist to help them through this trauma component of it is extremely helpful. However, there are actually very few people who are versed to address a trauma model. So I gave you this list and it's in your handout, but this is something if you are considering a therapist that you'll want to look at for these terms. Psychology Today... What's the other one I gave you? The are websites where you can go to look for therapists. The searches that you might want to use are people who use trauma informed mental health care. I had to write these out because I don't know what they all mean. Trauma Focused Cognitive Behavioral Therapy. And you've heard a lot about CBT, Cognitive Behavioral Therapy in recent years. However, the trauma informed takes it in a little bit of a different direction.

09:17     Eye movement desensitization therapy is being used to help people manage the trauma of GVHD. And then something that's starting to get more play is eye movement desensitization, which actually is something that's being used with battlefield trauma victims as a way to allow them to live better with their adaptation to trauma. And it also is being used in people with GVHD.

09:38     Some people with GVHD experience symptoms of post-traumatic stress disorder (PTSD):  For some people the effect of the trauma actually does include post-traumatic stress disorder. And again, the numbers differ here because of who did the research. So about 35% of people with cancer who were evaluated after they were done with treatment were found to have PTSD, according to one study. There was a higher incidence in PTSD among those who underwent bone marrow transplants and one author found that five to 28% of stem cell transplant patients had PTSD. And another author found that about 3% of patients who had undergone transplant had symptoms of PTSD.

Who gets these symptoms or who gets some of the symptoms of PTSD but doesn't necessarily meet criteria?  Up to 80% of people who have had cancer meet some of the criteria for PTSD.

For six months after adult stem cell transplant, Dr. El-Jawahri found that 39% of patients had moderate to severe re-experiencing of some of the effects of transplants and those of you who have been patients and those of you who are family members of patients can make a list of things that we're off setting. Was it the lack of sleep because people came in 24 hours a day? Was it the physical side effects of the treatment? Was it the isolation and going through it all? Just the reliving just happens. About a third had moderate to severe avoidance. "I don't want to see doctors, I don't want to see hospitals."

A really interesting thing that a number of patients have told me is that unfortunately some healthcare providers still wear certain colognes that people get away from the scent. If you happen to be a patient who is in the department store and walked by the cologne aisle and promptly threw up, because there was one nurse who wore one cologne and that happened to be the one on display the department store that day. Avoidance is a very powerful thing and the throwing up was literally the body saying, "I can't do this again." And then 48% have moderate to severe hyperarousal.

12:03     Family caregivers of GVHD patients are more likely to report post-traumatic stress than patients:  The thing that gets very much underplayed, and Susan was great and had all the people who have lived with GVHD stand up, but I want specifically to acknowledge the caregivers. So those of you who are caregivers, please stand up. Because this is your journey too. And there is a powerlessness and a fear and an isolation that comes in being a caregiver that is rarely attended to. Thank you for all your work.

Caregivers were more likely to report symptoms of PTSD than patients were. In one of the studies, I quoted the figure of 3.3% of patients, 7.1% of caregivers in that study had symptoms of PTSD.

This is also true for parent caregivers, parent caregivers of children undergoing stem cell transplants. And it was more true with moms than with dads. But I think that has to do with the fact that moms are more likely to spend their day. And that certainly isn't true within all families, but especially earlier in the course of the transplant, moms are more likely to be there, so they seem more commonly, they experience more again from the powerless and isolation way, my child is throwing up or not acting like himself or curled in a ball in the bed or won't talk to her friends on her phone and that must really mean that something's wrong. But it's also true for caregivers with adults.

13:42     Quality of life is as important includes physical, emotional and spiritual well-being: So when we are talking about how you live, we cannot just consider the physical. As Lori Wiener said, we have to consider quality of life. What makes quality of life? Dame Cicely Saunders was a brilliant and overeducated and wonderful woman who restarted modern hospice. She was a nurse and a social worker who became a physician and then became a pharmacologist because she knew where the important tools came from. But Dame Saunders identified any person's response to a disease is not just physical, but also social, psychological and spiritual. And spiritual does not mean religion. Spiritual means, from where do I get my meaning? What brings joy to my life? I ask patients that all the time. And the saddest thing that that I can hear is the very few patients who have said nothing. "Nothing brings joy to my life."

14:43     GVHD is a constant presence, but we can make choices about how it fits into our daily routine:  GVHD is likely a constant presence, especially initially in patients' lives. GVHD changes how people live and it has to be accommodated and that's where some of the choices come in. It has to fit into your daily routine. But I hope it gets to the point fairly shortly where it doesn't define your daily routine. You have to live with GVHD. Therefore, you get to choose how you integrate the effects of GVHD into your daily life. Now I'm being a little bit optimistic because certainly GVHD for many people imposes limits. But within those limits, then how do you want to live and what do you have to change and where can you find your joy?

15:32     When you have GVHD, your circle of friends may change: What my patients have taught me.

That very often with GVHD you're exchanging one set of symptoms for another. Your circle of loved ones and friends will likely change. People who you thought were your BFFs can't handle it. The chronicity is too challenging for them, so they step away. But then there are people who are just stalwarts and they will be there with you and for you. And they're the ones who when you're just having a really bad Tuesday afternoon or Saturday morning, you can call them and say, "Things are just not great right now." And they'll listen and not judge and not tell you what you're doing wrong because you didn't do anything wrong. This is not your fault. There is nothing you could have done to avoid this. It's a complication of a good treatment.

16:27     Know your physical and emotional limits, and set realistic about goals:  Give yourself a break. Part of the way you do that is by knowing your limits. I used to be able to run four miles a day, and now I'm lucky if I can walk up four steps. That's okay because you'll get to five steps next week. But know your limits, not just physical, but also emotional, spiritual, and psychological.

One thing that many patients and family members have taught me is, "I'm so tired of people telling me, 'But at least you don't have cancer anymore.'" Someone's heard that before. So be realistic with yourself. There are times when you don't have to be realistic, but in general, when you're setting up your choices and your self-expectations and your goals, be realistic and know your resources, which are not just places and things, but people. Because the reality is that very few people know about GVHD, including healthcare providers, so you are teaching us probably as often as we're teaching you.

17:28     Beware of friendly but useless advice from family and friends:  Or you'll get something like this. "Oh, my cousin's friend's sister's girlfriend used to have that. She had magic healing moon fossils implanted under her skin and now she's fine. You should ask her about it." I'm sure you never had anything like that. Very often you're misunderstood even by people who you thought would understand.

This is a conversation that a patient told me about a few months ago. The patient did have GVHD. "I don't know why you're complaining so much. Look at how your cousin fought his cancer. He never gave up." And the patient said to me later on, she said, "My cousin only lived three months. I've been living with this for years." Others, again, "I thought your cancer was cured. I'd invite you in, but my life is a mess."

18:27     Acknowledge life is different with GVHD, but try not to let it rule your entire day: This is a man who had BMT, GVHD, he also had a kidney transplant and was currently by our standards doing well, but he did have a severe symptom flare of his GVHD. What he said, and I thought this was brilliant, "I give myself 30 minutes a day to have a pity party, to review everything that is wrong. It's my whining time. Then I stop and go on with the rest of my day." I think part of his wisdom is that we should never pretend everything's okay because it's not. Life as before is different. So I can acknowledge that I can grieve that loss. I can acknowledge the work of that separation.

19:12     Find your tribe – people you know you can count on when times get hard:  Find your tribe, know those people who will be with you no matter what. This is Harry. My friend Wendy is a pharmacologist who actually deals with breastfeeding in the form of how is it safe for women to do breastfeeding? But Wendy has had a whole lot of losses in her life and the people who help her get through it include her horses and her dog. Harry just died a couple weeks ago. So your tribe does not have to be people.

Your tribe is whoever helps you and accepts you as you are, and I can't tell you how many patients have said, "I just curl up in bed with my cats." One of them had five cats and I said was it really that necessary to have five cats in bed with you? But she said it made her happy. I can't say no to that.

And this is again another... This is my daughter and her husband and their cat and that is their tribe. You'll notice her mother is not included in that. The cat gets fed better too, but that's okay. He's on an all-venison diet, high maintenance. Find your tribe and love them hard.

Also know, however,that you are doing as much for them as they are for you. So who are your supports? Again, a few people know or wants to know your journey, but those who do want to know your journey, those who will travel with you are like rare pieces of gold.

20:47     Supports do not always come from where we expect them. This is true for people who have GVHD, but it's also true for family members. Because the family members, the support people, the caregivers also need their support.

So very often I will have discussions with caregivers in front of the patient because I can't tell you how many times patients have told me they feel guilty because, "I know I'm taking over her life. I know she's given up so many things to take care of me. I know he misses going out with the guys." How can we make those things happen? What are our resources as far as people and time and acknowledging that, "I'm not really good being away for four hours. And in fact, I'd appreciate four hours alone, go out with your friends."

The notion of social supports is under acknowledged, but it's very, very important in recovery. And I'm going to say that's true again, not just for people living with GVHD, but also for their caregivers.

21:50     Doing your best to recover does not mean meeting someone else’s standards about how you should live:  What is recovery?

In healthcare we like to tell you there may be some bumps in the road, but in general, here's how we're going to get from here to there. In reality, I think it's not, for most people, so linear. A patient said again recently, "Some days I live, and some days I work hard at just trying to live." And each of those is a victory. Doing your best does not mean meeting somebody else's standards for how you should live, but rather it's how are you doing compared to how you feel like you should be doing. But you have to be careful not to put too much on your plate.

22:37     Living with GVHD can be a balancing act. And sometimes we encourage you to use all the resources you can, but there's such a thing as over-shopping for resources. You need one person to be the coordinator of your care and you know that you've got your cancer team and your GVHD team and your pulmonary team and your germ team and your rehab team and anybody else who's involved in your care. Who is the lead caregiver?

And sometimes caregivers don't know the answer to that too. That's a discussion where you will likely have to take the initiative. Or sometimes all seven think that they're worth the lead, so that's another juggling act.

This sometimes is very true in pharmacology. I once had a patient arrive with two full garbage bags with medication and I didn't even know where to start. Fortunately, we had a big enough safe that we could lock them in. What was meant to be helpful became burdensome for patients and families. Medicines have a huge role to play in how we treat GVHD. However, there can be too much of it and we have to be willing to stop things as willing as we are to start them.

23:55     [Cartoon] "I'd love to sit and chat for a bit, but your insurance no longer covers that."

24:01     Isolation is huge and for some people over months and years again, there are fewer people willing to hear the story. This is where you want to find a wise woman or a wise man who may be only in your life peripherally, but who will hear your story. Again, for some people, counseling can be very beneficial but it may be limited for reasons including financial reasons.

24:24     Be cautious of online support groups. For some people they're very helpful some of the time. However, for some people it brings them down further because that one's doing so great and listen to this... Because we're great at telling other people what we do well, but we're not as great as presenting realistically the balance of the challenges. And again, asking for help will sometimes get you to, "Well, my cousin's girlfriend's husband climbed the Himalayas and that cured him." It's not right for you if it's not right for you.

25:01     GVHD can put a significant strain on finances: Side effects include nausea, itching and mild bouts of bankruptcy. Having an illness can be expensive and we in healthcare don't talk about this often enough. 60% of bankruptcies in the United States are related to medical expenses. We treat this very often like a secret or an embarrassment and this is where you can use your team.

You can have a friend who you're comfortable knowing about some of your finances and it is his job to call the insurance company and he's the insurance company guy. You've been denied for this outpatient physical therapy, and how do you do an appeal? This is somebody who will know that you don't take no from the first person on the phone. You asked to speak to an appeals officer.

And who's your insurance? Not your state farm guy, but who's your friend who will take on the insurance companies? Ask your social worker for resources. Check with the American Cancer Society. And again, if you go to your host organization, they've got a ton of resources on their website.

26:11     Palliative care can be very helpful for stem cell transplant survivors: I want to talk briefly about what I do. Palliative care. Palliative care is first and foremost symptom management. It's also supported decision making. Should my grandmother with dementia get a feeding tube? What are the data that help us make that decision? And then for some few people, end of life care.

The benefits of palliative care in stem cell transplant are actually becoming quite well documented. This was a study that was done for patients who are undergoing stem cell transplant. And what they found is that those patients who had palliative care had decreased levels of depression and decreased levels of PTSD symptoms at six months. And I think it's in part because palliative care, we address not just the physical but the psychological, the social, and the spiritual as well. That's the luxury of what we do.

Symptom burden and anxiety symptoms during the stem cell transplant hospitalization partially accounted for the effect of the intervention on patients' psychological outcome. In other words, we who are palliative care providers have the luxury of addressing more than the physical and it actually allows people to live better. Again, going back to Lori Wiener's quote, quality of life... Oops, I hit the wrong button again. They are not going to let me have this toy.

27:36     How do you find a palliative care specialist? When we talk about getting palliative care interventions, how do you do it?

For most people, the internet is first, but there is a world outside of your computer screen. Check with the university hospital near you for palliative providers in your community. Are there clinics? Are there people?

I was on the phone with somebody the other day from Paducah, Kentucky and found two palliative care providers in Paducah, Kentucky. I did it in a very sophisticated way. I Googled palliative care providers in Paducah, Kentucky.

The other thing is most people who are palliative care providers were trained or previously worked at university hospitals, but more and more they're going out into the community. But other resources are acupuncture, Reiki, and other complimentary therapies such as biofeedback and others.

28:28     Go to a medical provider for Reiki or acupuncture, not your local spa:  Again, there's a video on the BMT InfoNet website that's very helpful on complimentary information, so that's the link for it. Be careful though with supplementals and herbals. Do not go to a spa for medical interventions even if they have Reiki or acupuncture there, go to a medical provider. And use your public library, talk with your library and because that person is... They're remarkable, librarians, and what they can help you with and finding resources is very, very good.

29:02     Talking about your experience can help relieve the trauma:  Find ways to talk about your experiences. The traumatic past is not necessarily in the past, it's in the ever present now. And words allow us to bring the past more safely into the past where it belongs.

And then find environments that are meant to intervene in the life of survivors. Survivors in the fact that you are here today, not in the everyone who's diagnosed with cancer is a cancer survivor. But most of all, for those of you who are living with this, appreciate your body. It's doing the best it can for you. Helen Keller said, "Be happy with what you have while working for what you want." Thank you very much.


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