Riding the Emotional Roller Coaster of Graft Versus Host Disease
Presenters: Katie Schoeppner MSW, LCSW of Be the Match and Huma Khan MSN, RN of Advocate Aurora Health.
This is a recording of a workshop presented at the 2019 GVHD Summit.
Presentation is 38 minutes, followed by 19 minutes of Q&A.
Transplant survivors with Graft versus Host Disease (GVHD) have a high likelihood of developing emotional and mental health complications. However, there are many strategies for survivors to cope and overcome, anxiety, depression and PTSD associated with GVHD.
- It's not just the physical symptoms that make it difficult to live with GVHD. The emotional reactions can be extremely debilitating as well.
- Our minds and our bodies are connected at all levels. Our thoughts, our attitudes, our feelings affect the physical state of our bodies, and the physical functioning and use of our bodies affect our minds and emotions.
- The emotional impacts of GVHD and going through transplant are real, they're common, and they often require assistance from others in order to get through them. Patients with GVHD should seek out: peers, mental health professional and programs focused on wellness through the arts, meditation and self-care.
04:57 A quarter of patients who have a bone marrow transplant will deal with some symptoms of post-traumatic stress disorder
08:16 Adverse psychiatric effects while using corticosteroid therapy are actually pretty common in transplant patients.
09:42 It is important to consistently assess for emerging mental illness in patients who are dealing with GVHD.
11:15 There are lot of ways to manage emotional distress when dealing with GVHD, and there's really not a one size fits all approach.
11:53 Allow yourself space to grieve the impacts of GVHD.
12:38 Connection with others is an important strategy for feeling emotionally healthy when living with GVHD. (Connecting with GVHD peers can often ease the sense of isolation)
15:32 Good communication is a key strategy for improving emotional health when dealing with GVHD.
18:34 A therapist or a counselor can offer new tools and strategies for coping with the difficult emotions that are going on, as well as identification of mental health disorders.
22:25 Connecting with another bone marrow transplant patient can often ease that sense of isolation.
23:32 Relaxation and mindfulness are additional simple techniques that can really ease anxiety and pain that comes from dealing with GVHD.
Transcript of Presentation
00:00 [Moderator]: Welcome to the workshop, Riding the Emotional Roller Coaster of Graft versus Host Disease. I am Kimberly Powers. I work at Lurie Children's in Chicago, and I'm one of their nurse practitioners, so welcome to this morning. I'll be your moderator this morning. I'm looking forward to hearing our guest speakers about this important topic. This session is designed to be interactive. We ask that you hold your questions until the end of the presentation.
So right now I'd like to introduce Katie Schoeppner and Huma Khan. Ms. Schoeppner is the supervisor, counseling, and volunteer services and patient support center at Be the Match. She oversees a variety of support programs for the BMT patients and caregivers, including counseling, support groups, and the peer connection program.
Whereas Ms. Khan is the manager of the BMT and cellular therapy program at Advocate Hospital. She also directs the structural and operational components of the CAR T cellular therapy program, so please join me in welcoming our presenter, Ms. Schoeppner.
01:07 [Schoeppner] Overview of presentation: Thank you so much Kim. It really is an honor for me to be part of this summit today, and to engage with so many of you who have been through transplant or have been through transplant with a loved one.
Today we're going to be talking about riding the emotional roller coaster of graft-versus-host disease. We'll spend a short amount of time in the beginning of the presentation reviewing some of the common emotional reactions to GVHD. I don't want to spend too much time there though. I really want to spend most of the time talking about the connection between the mind and the body, and then learning strategies for coping with some of the emotional reactions that come along with having GVHD. Of course at the end we'll have plenty of time for questions, both for me and for Huma.
01:56: Speaker’s Background: I want to start by telling you a little bit about me. First and most importantly, I am not a BMT survivor, and I have not experienced GVHD. I say this as a really important acknowledgement of the fact that all of you who are either patients or caregivers have the corner on your own lived experience. For each of you, it's going to look different.
I am a licensed clinical social worker, and in my current role I provide individual and group counseling to BMT patients and families at all points along the transplant continuum. I've worked with BMT patients since 2008, first as a social worker at the University of Minnesota in their BMT program, and for the last five years at Be the Match.
Lastly, I just wanted to mention that I am really passionate about improving the quality of life for patients after transplant. We know that BMT is a miraculous treatment, and it's pretty incredible how it works. However, it's really not all that impressive unless people after their treatment can live well into survivorship.
So a patient I worked with sent me this cute cartoon, and I might have really liked it because I'm from Minnesota, and it was snowing when I left yesterday. But in the cartoon the snow woman says to the snow man as the snow is falling down, "Look, stem cells!"
03:26 GVHD Basics: So I realize that you are all likely very familiar with graft-versus-host disease and what it is, but to ground us all in a shared understanding, GVHD is a common and sometimes very serious side effect of a donor transplant. It happens because of the difference between the donated cells, or the graft, and your body's cells, the host. The donated cells might see your body cells and attack them because they're different. Symptoms of GVHD can affect the skin, stomach, intestines, liver, nails, joints, and muscles, eyes, mouth, lungs, digestive system, and genitals. Life with GVHD can mean a lot of things. It can mean living with a chronic condition, living with painful and uncomfortable side effects, living with mobility issues, and living with uncertainty.
04:22 It's not just the physical symptoms that make it difficult to live with GVHD. The emotional reactions, which is what we're focused on today, can be extremely debilitating as well. So what are some of the common emotional reactions? If you're willing, just shout out some of the things that you have experienced or you're aware of as emotional reactions of GVHD. Grief, depression.
Anger. Most definitely. You guys hit on really all of these.
05:05: One of the things I wanted to highlight specifically is post-traumatic stress disorder. I don't know if anyone said that, but it's actually fairly common for BMT patients after a transplant to deal with post-traumatic stress disorder. In fact, I read a research study recently that said a quarter of patients who have a bone marrow transplant will deal with some symptoms of post-traumatic stress disorder, and those symptoms include things like flashbacks, nightmares, or intense anxiety that can lead to avoiding certain situations. So I've worked with patients who can't drive the route that they drove to the hospital because they have such an intense physical trauma reaction when they drive that road.
I also wanted to mention that many BMT physicians will tell their patients that a little bit of GVHD is a good thing. It's the graft versus tumor effect, or the graft versus leukemia effect. So sometimes people feel a little bit of relief when there is some minor GVHD, and perhaps some anxiety if it doesn't arrive as they expected or as the doctor said would be a good thing.
06:19 One of the more interesting things about emotional health is that it really isn't a separate part of recovery from physical health. Our minds and our bodies are connected at all levels. Our thoughts, our attitudes, our feelings affect the physical state of our bodies, and the physical functioning and use of our bodies affect our minds and emotions.
There's a lot of research about how chronic stress, for example, causes physical reactions in people's bodies, like headaches, chest pain, and sleep disturbance. There's also some interesting research demonstrating the impact in the opposite direction, for example, we're learning more about how the balance of bacteria in our guts and chemicals in our bodies such as serotonin and dopamine is linked to mental health.
As a transplant survivor or as a caregiver to a transplant survivor, you may see this connection between mind and body in different ways. For instance, when your body strengthens and your energy goes up, you may feel happier and more connected to your friends and family. Similarly, a GVHD flare may lead to increased anxiety or a bout of depression may cause an increase in fatigue.
07:34: Steroids can help GVHD but also can have adverse effects: The good news about the physical side of the connection on the last slide as it relates to GVHD is that there is treatment. Steroids, usually prednisone, can be an effective treatment for graft-versus-host disease. Yet, this drug is a double edged sword. Prednisone can be a lifesaving treatment that has some positive side effects, such as better appetite, higher energy, and relief of acute symptoms of GVHD. On the other hand, it can cause osteoporosis, swelling, weight gain, and can lead to an increased risk of infection. This is really just the tip of the iceberg.
08:16: Along with these physical responses to steroids, there can be significant impact on emotions as well when people are taking prednisone. Adverse psychiatric effects while using corticosteroid therapy are actually pretty common in transplant patients. Mood disturbances, psychosis, lethargy, delirium, and depressive symptoms may all be caused by chronic steroid use in patients. For this reason, it's really, really important to always talk to your doctor if you're receiving steroid therapy and you're having any effect on your mood or you're noticing any changes to your mood.
I actually just finished reading a book that Sue Stewart pointed me to, written by Jill Stegman. It's called One Pill Makes You Stronger: The Drug That Scorched My Soul. In it, it's a memoir that Jill writes. She was the caregiver for her husband, Don, who is a transplant patient, and Don dealt with really severe steroid induced psychosis and depression and ended up committing suicide. It's a really powerful testimony, a difficult book to read, no doubt, but a powerful testimony about the importance of maintaining awareness of the mental health and the emotional health struggles that sometimes accompanies steroid use. If you're interested in the book or want to see it, feel free to come up. I can share it with you.
09:42 Importance of monitoring for emerging mental illumes in patients dealing with GVHD: So a story like Don's absolutely highlights the importance of constantly and consistently assessing for emerging mental illness in patients who are dealing with GVHD. The first step in assessing is to attend to your medical needs. To kind of rule out the medical, or deal with the physical first. So this means talking to your doctor about any symptoms that you or your loved one are experiencing, and then getting treatment for the physical effects of graft-versus-host disease. Of course, as we talked about previously, also sharing any concerns about emotional changes or mood or behavior changes that could be addressed by your doctor.
Then once those medical needs are addressed, the next step in assessment of emotional distress is to attend to both the physical and the psychological signs that you might be seeing in yourself. So some of the physical signs of distress include things like increased heart rate, muscle tension, headaches, sleep disturbance, or tearfulness. Psychological signs of emotional distress that are important to note are things like racing thoughts, uncontrollable worry, lack of interest in previously enjoyable activities, flashbacks, emotional vulnerability, and isolation, pulling away from the people in your life and really wanting to be alone much of the time.
So once you attended to your medical concerns and sought treatment for those, and determined that you're noticing some signs of emotional distress in yourself or loved ones, the next step is to determine what's the best course for you. What's the best way to get help.
11:33: There are a lot of ways to manage emotional distress when dealing with GVHD, and there's really not a one size fits all approach. It's important to think about what's worked well for you in the past, and what kind of interventions or coping strategies will fit into your current lifestyle. Strategies for riding the emotional roller coaster of GVHD come in a lot of different shapes and sizes, and my hope today is that you will walk away with at least one way, new way, to approach some of the emotional stuff that comes along with having this disease.
12:11 First, and possibly most important, allow yourself space to grieve the impacts of GVHD. I think grief is one of the first things that someone said when we were talking about the emotional effects, and with how life impacting this disease can be, it's normal to feel grief emotions, and it's really important to be gentle to yourself and give yourself space to grieve the losses that come along with living with GVHD.
12:38 Connection with others is another really important strategy for feeling emotionally healthy when living with GVHD, yet often times patients feel a lot of anxiety about how GVHD is going to impact their ability to socialize with others and get that social connection that helps emotionally. So taking some really simple steps to be prepared can help a lot.
What's the setting like where you plan to socialize? Is it in a dark restaurant where, if you have GVHD of the eyes, it might be hard to even read the menu?
Are you going to be outside at all? So is there concern about sun exposure if you're dealing with GVHD of the skin?
Or are you worried about how close you might be to a bathroom because you're experiencing GVHD of the gut?
All of these things can sometimes get in the way of people even wanting to go out and socialize. A good approach is to think about it in advance. Make a plan. When you get wherever you're going, make sure you know exactly where the bathroom is, exactly where you can get to shade, so that you can reduce anxiety and get that social connection that will help from an emotional standpoint.
13:50 GVHD of the eyes has a really significant impact on quality of life: So I mentioned briefly GVHD of the eyes, and I'm curious if any of the room has dealt with GVHD of the eyes or is dealing with it currently. Okay. A few people. This has come up a lot in my counseling practice lately, so I wanted to highlight it specifically. I think GVHD of the eyes often has a really significant impact on quality of life because our sight is arguably one of our most important senses, if not the most important sense. So if someone's experiencing a lot of pain or discomfort in their eyes or issues with their vision, it can often lead to a lot of frustration or even anxiety or depression.
So a couple strategies specific to this type of GVHD:
One is to focus on engaging the other senses. So really heightening the experience of bringing in information with the other senses. Things like listening to your favorite music, having some essential oils that pleasing to smell. If you're able to enjoy food, really indulging in meals that you love can help.
It can also be helpful to find activities that don't require strain on your eyes. So listening to audio books, listening to your favorite radio station or even just talking to a good friend of family member on the phone. That can allow that connection and that sense of engagement without requiring strain on your eyes.
Lastly, some people notice that things are easier in the morning for whatever reason. Maybe because the eyes have been shut all night while you're sleeping, hopefully. So utilizing that time, whatever it is, to do the things that do require your eyes can be helpful.
15:32 Good communication is important for your emotional health when dealing with GVHD: Next I want to talk a little bit about communication, because good communication is actually a key strategy for improving emotional health when dealing with GVHD.
So the first slide talks about communication with your medical team or your doctor. As I'm sure many of you have experienced, it can be really difficult to get all of the questions answered that you might have in that quick clinic appointment or check-in.
So one strategy is to think ahead, prioritize your top concerns, the things that your most worried about, the things that are most pressing that you want to speak to your doctor about, and at the beginning of the appointment, simply say to that provider, "I have some questions that I really need to discuss today. Can we be sure to leave enough time at the end of the appointment? I think I'll need about 10 minutes." Or whatever it may be.
Another helpful question to ask when you're visiting with your provider, whether it's about a physical symptom you're noticing or an emotional symptom is at what point should I be concerned about this? It can be really hard sometimes to know when to call the doctor. When is this concerning or when is this the natural progression or expected? So asking that question specifically can equip you with information that you can then take and use going forward.
If you are unable to get all your questions answered at an appointment, which does happen, I would encourage using the online portal, if you use MyChart with your transplant center, your healthcare provider, or happen to have your physician or your mid-level provider's email address, or even just calling the clinic. It's okay to take that step to make communication with your provider and ask the questions that you didn't get answered during your clinic appointment.
17:19 Then with regard to communication in the realm of your personal life, it can really be helpful to be as open and honest as possible with your loved ones about your GVHD and what's going on. Finding that place of vulnerability with other people in your life can really open up unexpected support around how limited you may be feeling with GVHD. It's important to be honest about your emotions, to be truthful with the people around you, if you have trusted friends and family, and ask for what you need specifically from them for support.
17:57 The emotional impacts of GVHD and going through transplant are real and common, and often require assistance to manage: I know for a lot of people that can feel really uncomfortable or intimidating. I've worked with a lot of people over the years who are caregivers by nature, and the idea of asking for help from others feels really uncomfortable. But it's important to know that the emotional impacts of GVHD and going through transplant are real, they're common, and they often require assistance from others in order to get through them. So by opening up the line of communication between you and your doctor, and between you and your support network, hopefully you'll feel better equipped to address your emotional health.
18:34 Finding a therapist or counselor to help you process difficult emotions: While loved ones can undoubtedly be a source of support when it comes to emotional distress and dealing with GVHD, it can also help to seek professional support. A therapist or a counselor can offer a good outlet for processing difficult emotions, a perspective from someone who's not intimately involved in the BMT journey. New tools and strategies for coping with the difficult emotions that are going on, as well as identification of mental health disorders.
Sometimes finding the right mental health professional can be a challenge, though. There are a lot of different elements that make therapy or counseling effective, and it's important to take time to find the right fit for you and find that person that you really can connect with.
So a good place to start if you're seeking a recommendation for a counselor is a trusted provider. So talking to your BMT physician or your primary care doctor, or your social worker. Someone that you know and trust that can guide you to someone who they think would be a good fit for you.
From there, it's really important to verify that that person is in your insurance network, and what the cost will be to you, and if a therapist that you're interested in is in network, but still has a cost, you can always ask about a sliding scale fee, to find out if there's an opportunity to pay what you can based on your income.
Additionally, it's really important that you work with a licensed professional, and people are licensed in a lot of different ways. There's a lot of different things, as counselors, psychologists, social workers, licensed marriage and family therapist, and that generally doesn't matter too much to people, but it is important that they're a licensed professional.
Remember that some people, some therapists, some counselors specialize in a specific type of therapy or have a specific focus, and that sometimes it takes a little while to find the right person. It's okay to go to one session and realize this wasn't a good fit, and keep looking for someone else.
Some people feel uncertain about when to go ahead and ask for professional help, to seek out a counselor or a therapist to deal with the emotional effects of GVHD. So the first thing I want to say is there really is no bad time to get professional help, and you don't need permission to do it. So nothing has to happen, or you don't have to be a certain way. It can often just help to have that support when you're going through something as significant as having had a bone marrow transplant.
21:09 Behaviors that can signal it is time for professional mental health services: In terms of knowing when it's absolutely necessary to get help, the best thing to do is to tune into a variety of experiences or behaviors that might indicate that there's an issue going on that really does require help.
It's also important to listen to those around you. Your family, your friends, the people who see you day to day are likely to notice things and be able to come to you and say, "I think it might help to go and get some therapy or see a counselor."
So ask yourself things like, are you using substances? Like alcohol or drugs to cope. Are you having extreme high and low moods? Are you having thoughts of suicide or homicidal thoughts? Thoughts of hurting someone else. Be aware of the increased difficulty that you might be having with coping with life's challenges. Is it just getting harder to deal with the things that are coming your way?
It's also good to keep kind of your finger on the pulse of how much you're enjoying life. Are you finding joy in the activities you used to, or are you just feel a dullness? That can be a sign that it's time to get some help. Also isolation is a sign that maybe it's time to get some professional help. If you're pulling away from people and not wanting to be around the people that you once enjoyed being with.
22:25 Connecting with others who have GVHD can be helpful: There's no shame in reaching out when you're struggling, and it's really important to be proactive in terms of your emotional health. Another form of social support can come from peers, the people who have been through transplant as well, either as patients or caregivers. Connecting with those people can often ease that sense of isolation that sometimes comes with being a bone marrow transplant patient, and someone who received a really uncommon treatment, and talking to someone who gets it in a way that others don't can really feel healing to a lot of people.
Also other patients and caregivers often have the best ideas in terms of dealing with GVHD or coping strategies, things that you might not hear from your provider. So there are a lot of different programs. BMT Infonet has its Caring Connections program. Be The Match, my organization has a peer connect program, and most of those programs are open to anyone at any point along the continuum, so feel free to reach out to those if that's of interest.
23:32 Relaxation and mindfulness are additional simple techniques that can really ease anxiety and pain that comes from dealing with GVHD. Mindfulness exercises, which are often used in yoga and meditation, really aim to bring your attention away from the stressor to the present moment. The emphasis in this kind of mindfulness is really that connection between the mind and the body. So developing a yoga practice, whether it's going to a class or just googling yoga and finding a video on YouTube can help with things like focusing on balance and gentle stretching and grounding exercises.
Meditation practice incorporates things like breathing, personal reflections, and mantras. I know a lot of people are sort of turned off by this idea of meditation. It feels like you have to be a certain way or know a certain thing to be able to do it, but it really doesn't have to be complex. For some, it's just stopping for two minutes every day, focusing on their breathing and repeating a mantra, which is a phrase that's calming or inspiring, something simple like I am healing every day.
24:49 Self care is also a good way to relax, and ease some of the emotional difficulties that come with living with GVHD. These are simple ways to kind of take a break from the emotional difficulties. Taking a long shower or a warm bath, if that's doable for you. Spending time in nature, taking just a few quality moments alone, reading a good book. All of those things can be rejuvenating and help your emotional health.
Lastly if massage is an option for you, which I know it's not for everyone, that can be a good way to relax. Either a professional massage or a loved one who's willing to give you a back rub. That can really help.
25:38 So another simple way to infuse mindfulness into your everyday life is through breathing exercises. So I want to step away from the presentation briefly and lead you through a quick breathing exercise. This is something that you could use at any point, patient or caregiver, if you're dealing with anxiety or feeling pain or frustration. If you are not comfortable doing this for whatever reason, no problem. You can just sit and breathe normally, but for anyone who is interested, I'll go ahead and guide you through a calming breath exercise.
So before we begin, just kind of take a minute to settle into your chair, make yourself comfortable. However you need to. Once you're settled in and feel comfortable in your chair, if it feels good to you, just blink your eyes closed. Bring those eyes down, and draw attention to your breath.
So we're going to start by exhaling all of the air out of your lungs. Then when you're ready, take a long, slow breath in through your nose, first filling your lower lungs and your upper lungs and hold your breath for the count of one, two, three, and then exhale slowly through pursed lips. While you relax the muscles in your face, jaw, shoulders, and stomach.
We're going to do that exercise one more time, so keep your eyes closed if you like. Take another long, slow breath in through your nose, first filling up your lower lungs, then your upper lungs. Hold your breath for the count of one, two, three, and exhale slowly through pursed lips while you relax the muscles in your jaw, your face, shoulders, and stomach.
So before we move on, just take a minute to check in with your body. Did you feel a decrease in muscle tension, or just more centered and present in the moment? If you did, this might be effective going forward. It's so simple, and it really can be a great way to bring yourself back to the present moment if you're struggling with frustration, with anger, with anxiety.
28:11 Healing through the arts: The next strategies I want to discuss are expressive in nature. So as you probably know, sometimes being a transplant patient, and a person with GVHD starts to feel like it closes in on people, and impedes other parts of their identity. Using music, writing, art, or dance can help unlock feelings of joy and meaning that have been dormant for a while.
I realize that not everyone thinks of themselves as artists or musicians, however this isn't really about accomplishment in the traditional sense, but about expressing yourself in different ways. These modes of expression can really help to make meaning out of the BMT experience, or make meaning out of what it is like to have GVHD.
Drawing a picture of what it feels like to have the donor graft attacking your body, or writing about what it's like to be on steroid treatment. Or even if you're ambitious, choreographing a dance that sort of shows what the BMT journey has been like in your life can really be a powerful way to tap into some underlying emotions.
29:22 Next I wanted to mention the simple practice of focusing on acceptance and gratitude as a tool for alleviating emotional distress. The future with GVHD is often uncertain, and bringing your awareness back to what you do have control over today can reduce those feelings of stress. So when feeling overwhelmed with how limited you may feel with GVHD, practicing gratitude and self-love, specifically towards your body, can help. So examples would be thanking your body for being strong enough for transplant.
I worked with a woman recently who was very active in everything she did, both professionally and personally pre-transplant. Was using her body. She was a strong, young woman, and really having a hard time post-transplant dealing with GVHD and muscle atrophy, and she felt like her body had let her down. We talked about how all of that work, all of that strengthening, and that strong body she went into transplant with really did bring her through. She needed that to get her through transplant. For her, that shift, that reframing, really helped.
I also wanted to share just a couple of quotes from real patients that I've worked with. One of them said my body needs this, referring to prednisone, now. But it doesn't mean that it will be forever. That sort of mantra, that quote, really helped this person remember that this is something she needs now, but she won't need it forever. Another person I worked with said you can't always control the cards you were dealt, but you can control how you can play. So again, focusing on the things that can be controlled. Your reaction to the difficult things that come up that are out of your control.
31:14 So the last technique I want to talk about today is something called cognitive restructuring. This is a common practice for counselors and mental health practitioners. You may have heard of it as CBT, cognitive behavioral therapy. It's effective because of that strong connection between our thoughts, emotions, and behaviors. So by changing your thoughts, you can in turn change how you feel emotionally. My goal for the next few slides is to send you away with some practical rules that you can use to improve your emotional health.
So cognitive restructuring refers to the process of learning to identify and challenge irrational or maladaptive, not helpful, thoughts. Which we refer to as cognitive distortions. Those impact your emotional health. So a few examples of cognitive distortions, which are on the screen, include “all or nothing thinking”, over generalizing and jumping to conclusions. We all do this. We all do these things. It's just a matter of recognizing them and trying to retrain our brain and how we respond.
So a few examples of cognitive distortions for “all or nothing thinking”, for instance. It's often having an irrational or exaggerated response, such as I am either healthy or I'm not healthy.
Overgeneralizing is coming to a general conclusion based on a single incident. So, for example, I missed my medication once; that means I'm incapable of managing my medication successfully.
Jumping to conclusions is when you decide something without having all the facts, and reach an unwarranted conclusion. So an example of jumping to conclusions would be, ‘my doctor didn't call me back at the end of the day like she said she would. There must be some bad news about my GVHD.’
So those are just a few examples of some of the common cognitive distortions that people who've been through transplant might experience.
33:25: A thought log can help identify irrational thoughts and feelings and enable you to plan to address the problem in a healthier way: So one tool that you can take home that can help mitigate some of these cognitive distortions is a very simple thought log. The intent of the thought log is to help retrain those maladaptive or not so helpful thinking habits. The thought log helps you become more aware of those irrational thoughts, feelings, and behaviors, and the relationship between the three. Once you identify the irrational thoughts, you can then come up with an alternate, more rational justification that can ease anxiety around a certain situation.
The four components of a thought log include the event, the negative thought that occurred, your physical or emotional reaction, and an alternative, more rational thought. So working through the example on the slide, the event could be I woke up with yet another flare of my GVHD of the skin. The negative thought is “I've been dealing with this for months. This will never get better.” The emotional reaction to that thought is hopelessness, depression, lack of motivation. Then the alternate thought that could replace that negative thought is “this is really hard. I've gotten through hard things before, and I well get better.”
The hope, when using this tool, is that following an anxiety-inducing situation, you'd be able to come up with that alternate response so that when that particular situation occurs again, you're able to challenge that negative thought with a more rational one.
Again, using the example on the slide, the hope is that when you wake up the next time with worsening GVHD, you're able to use rational thoughts to decrease the emotional reaction of the situation and then decrease anxiety. This can be a really effective tool, especially if it's used consistently in order to reduce overall stress and anxiety. So it's simple enough. You can almost commit it to memory, although it can work more effectively if you write it down, and just continue to challenge some of those thoughts that crop up right away.
35:33 So an additional tool when retraining your thought process is something I like to call putting your cognitive distortions on trial, or, in more plain language, taking your thoughts to court. So really what this is, is examining the evidence for and against a not so helpful or maladaptive thought.
So using the example on the slide, many patients have ongoing anxiety related to GVHD and wonder if it will ever get better. So the quote on this slide is, "My GVHD will never improve." While this is an understandable concern, of course, often times the anxiety is not rooted in fact. So by unpacking the reasons for and against why this thought may be true, you can help alleviate some of that anxiety around this fear.
So walking through the example, some arguments for GVHD never improving include simply that you've dealing with it for months, or maybe years. An additional argument would be that you just have a bad feeling. It's not going to get better. Both are valid and understandable concerns.
Now, if we look to review the reasons against why this statement could be true, some fact based reasons why it might not be true include the fact that your doctor told you to expect it to get better over time, that there are new treatments that you haven't yet tried for your GVHD, and that you are abiding by all of the treatment recommendations that your doctor currently gave you.
So reviewing these arguments, for and against the case of your GVHD never improving, which thought is more supported by the evidence? The arguments against are rooted in fact, whereas the arguments for are more rooted in fear. By examining the facts around the concern, you can decrease the anxiety you feel about GVHD. Similar to the thought log, this is a tool that when used consistently, can be really effective in reducing overall anxiety.
With that, I am going to conclude the presentation, and I want to thank each of you again for attending today to learn more about GVHD and emotional health. Hopefully you leave knowing that even though the emotional side effects of GVHD can be difficult to cope with, there are many ways to address them. Seek the health and support you need, and find the tools that work best for you. Most importantly, remember there is hope. Emotional distress in the midst of GVHD is common, it's really, and it's treatable.
38:17 Resources: So before we move on to the Q&A with Huma and I, I wanted to just point you to some really important support resources. Of course, all of you know about BMTInfoNet, and everything that they have to offer for patients and caregivers. I also put the website for NBMTLink, a fantastic organization with so many resources and support programs, and then the Patient Support Center at Be the Match. We have patient navigators, we have counseling, support groups, patient grants. So wanted to make sure those were on the slides, which I know you all have, and encourage you to seek out those sources of support. So now we will move to the Q&A.
Moderator: Okay, I'm going to have you guys raise your hands for questions and we will walk around with a microphone to you so you don't have to get up necessarily. Okay? Anybody have a question? Hold on.
Audience: Do you feel that GVHD could be brought on by stress? I have a lot of stress. My caregiver now has Alzheimer's and Lewy Body Syndrome. This is actually my best friend with me today, and I have a lot of trouble just because of his problems, and then I've got GVHD now. I love prednisone because I can move, which I can't move any other time. I'm on 25 right now.
39:55 [Schoeppner]: Okay, so as a non-physician, non-medical provider, I can't speak directly to the link, and if stress is actually a cause of GVHD or worsening GVHD.
What I can say is that the connection between the mind and the body is real, and I think when we're under a lot of stress in general, our ability to fight off infection, our body's ability to respond to a GVHD flare is undoubtedly decreased. So I think simply from that frame of reference, they're all interrelated, and the higher your stress level, it's likely that physical symptoms and disability are going to be worse.
So I think the answer is to really attend to your emotional health. To not let it be the thing on the back burner, but to actually bring it to the forefront and make sure that you're doing maybe some of the things that we talked about in the presentation or whatever works with you to make sure that you're in the best place possible emotionally even amidst a really difficult, challenging situation.
[Khan]: Well, it is not directly related to causing GVHD, but as Katie said, stress can have significant impact on your recovery. So the first thing I would advise is talk to your transplant team. It could be your physician; it could be the nurse that you're directly in touch with. Talk to them that I'm feeling very stressed.
Talk to your family member. The caregiver can be the person who talked to the transplant team to talk what you're feeling. Stress does not directly cause GVHD, but can significantly impact your road to recovery, so please communicate with your healthcare team.
Moderator: Any other questions?
42:21 [Audience}: Yes. How do you correlate depression and GVHD? Is it actually causal, effectual, or the depression comes on as a result of the physical portions of the GVHD?
[Schoeppner]: So that's kind of a hard thing to tease out. In part because GVHD is one, really important component, but just one component of survivorship. So people in survivorship are addressing GVHD, dealing with GVHD. Also dealing with the changes that come in other realms. Maybe not being able to go back to work, or relationship struggles as a result of going through major medical, as well as things like taking prednisone for GVHD, so there are a lot of factors, a lot of things sort of coming at the person's mental health that can cause a clinical depression or simply feelings of sadness and struggle.
So while I don't believe there's any direct correlation that GVHD itself causes depression, except of course in the case of prednisone, leading to psychosis or depression, it really is a piece of a puzzle that often ends in people's struggling with depression post transplant.
[Khan]: So yes, you have gone through a lot already. You've gone through your transplant process, that's over. So it's a relief; oh, that is over. But then there is also that fear of unknown, what's next. Dealing with GVHD, it is very normal to feel depressed, sad, anxious, fearful. So while there is no direct relationship, but yes there is. You have gone through so much. You have succeeded the transplant itself, but there is more to come that you are trying to gain control of.
44:27 Coping with Physical Changes: [Audience]: Hi. The question I have, so I went through the transplant, of course, and I got skin GVHD, and so when I go outside, I live in California, so we were blessed or cursed, depending on how you look at it, with sun a lot, and sun and my skin aren't friends anymore.
So when I go out, I cover up myself up with sun protective clothing and Coolibar and myself now are friends, which is a brand of sun protective clothing. Long and short, when I go out, I am covered about 90%, so I feel emotionally alienated because people look over at me, and they're like, is she Muslim? They're confused because I am gloved and masked, and I am not one to suffer from depression, but it is tough at times because I don't alienate myself from loved ones or social events, but I'm alienated physically.
So it puts a barrier between myself and my old life, but also myself and other people. Because it's not so much that I'm being judged, it's just, I don't feel connected. So my social events are tainted by that, which is bizarre because it really is just physical barriers, but emotionally you live 40 something years where you don't think of that, and it absolutely is hard at times for me to kind of deal with that. But I don't really know what I'm dealing with, if that makes sense.
Audience: Because it's just clothes, right? But it is a whole event for me to be outside. Or even to go somewhere, so I'm struggling with that. So I don't know if you've heard that from others, and how they deal with that, or what advice you would give with that.
[Schoeppner]: Yeah. I think it makes perfect sense, exactly as you describe it, and I think sometimes that kind of thing falls into the category of an ambiguous loss. So it's different when you think of life before transplant, you walked out the door. Maybe you grabbed the sunscreen, maybe not. But you walked out the door and freely engaged with people, and now that looks very different. That freedom is lost or gone. There is the putting on of the armor, the sun protective clothing, which is great. I'm glad that we have that. Then going out and having this physical barrier, so I think there's some grief there, certainly. I think it also does symbolize something. It isn't just some protective clothing. It's this thing that makes you different. Different from other people, different from your pre-transplant self.
So I think in terms of intervening or a coping strategy around that, I think there's room for working on acceptance, working on just kind of consistently reminding yourself, this is how I stay safe right now. This is how I protect myself. I can still talk to my loved ones, I just talk to them through this armor or screen or however you conceptualize of it.
That can help. Kind of reframing, I think, sometimes there can be some negative feelings around putting on all this stuff. Or dealing with these things, and there can be some benefit in some reframing cognitively, thinking about it as I have the opportunity; I have the opportunity to go out and I need to protect myself when I do. That seems really simple saying that, but sometimes just shifting how you're thinking about things can help. But I think ultimately just acknowledging it is powerful too. Acknowledging that this is hard. This is a change.
[Khan]: I was about to say, take one day at a time. Sometimes one hour at a time. It is a long journey. Be patient, but sometimes it is this is my normal new. I will get through it. It's just a matter of time.
Audience: Have there been any studies on hearing in GVHD?
[Khan]: As far as my work involved, I have not heard about that. So I do not know that.
[Schoeppner]: I've heard a lot of patients talk about tinnitus, [inaudible 00:49:14] constant ringing in their ears. I also have not read any specific studies related to hearing. Has that been an issue?
49:34 Is inadequate testing before transplant the reason some patients get GVHD: [Audience]: Yes, hi. I just want to ask this question. I know that we react differently to medications. In better understanding this GVHD, is it because adequate study or test was not done that we have this reaction. I know it doesn't happen in all patients. So the side effects. What actually or how can we relate to this happening?
Audience: Yes. Why? Is it because adequate tests was not done. I mean, is not like... There was no, should I say no complete match wherein the pre-study was done. Is that why causes this or it just happen at random? Because I know where you taking your medication, they always say it's 99.9. There's always this .1 or whatever it is that you, I mean, it may not work for everybody. Do you understand the question?
Audience: Okay. Thank you.
[Khan]: Well, every patient is different, and the way they respond to their transplant is different. Your transplant team do maintain your trust. They have taken every measure to do all the testing, the pre-transplant testing to be done in order to make your transplant journey safe. In terms of why some people get GVHD, why some do not, why some get acute, why some get chronic, and some get both. There have been studies. It does depend on the [inaudible 00:51:12] matching between you and your donor. That's one of the reasons. The age of the donor as the well as the recipient is a second factor.
That can impact you having acute or chronic GVHD. The third is if it's a female donor, the pregnancies that's involved for the donor. These are the some of the few factors, but again, your transplant team, they're making every effort to make sure that you do get the required medications, the anti-rejection medications that you're on to prevent those. So yes, your body is different. It's going to react differently to transplant, and the medication to treat GVHD. But there is no test that's not being performed so that you’re having the signs and symptoms after.
Audience: Again, I have another question. In the GVHD disease, I just want to check with you. For a patient, how long do you think it can take before it is resolved?
Moderator: That's a tough question.
[Schoeppner]: It's a tough question with no specific answer.
Audience: What's your experience?
[Khan]: Chronic GVHD can last for several years. Acute starts as soon as you engraft, within a few weeks after your transplant. But the chronic GVHD can impact you for a couple years after your transplant.
[Schoeppner]: Or it might not even start or-
[Khan]: Or it doesn't... Yeah. It may not even start. If it exists. Or it may reoccur later, a year after your transplant. So again, you may react differently than I will or any other patient will.
Audience: Thank you. I've had occasion to use Be the Match services. Thank you for what you do and thank you for being here. As a reference to social workers and counselors and psychologists and so on, as we mentioned, there's many different licensing. Is there a way that you know or a database that could refer us to people who have experience with GVH or bone marrow or at least cancer? Because other people that are outside this world have trouble understanding what people are going through.
[Schoeppner]: So that's a great question. The question is if there's some kind of database or way to find a therapist, a counselor, mental health professional who knows about GVHD specifically, and the answer is there really aren't that many mental health professionals who have that expertise. So I think there are two things to do. One is to utilize services like that of Be the Match, the counseling services we have. It is over the phone. It's not in person unless you happen to live in Minneapolis, so that's not appealing to everyone. But our services are provided by social workers who have lots of experience working with patients who have GVHD. So that's one option.
[Schoeppner]: The other best option for finding someone is to go back to your transplant center and ask the social worker for a local referral to someone that they've known. So there's not. I would love if that existed, because I think what we hear from our counseling clients a lot is, I went to a therapist, and I spent two, three sessions trying to explain what this transplant is, and what GVHD is, and there's just a little bit of a miss in connecting with that person. So I know it's a need. Yeah.
Moderator: We have time for two more questions, and they already have microphones, so.
54:54 [Audience]: In your line of work, have you come across patients that have multiple forms of GVHD at the same time? It's not unusual?
[Khan]: It is not unusual. It is very normal to have GVHD for your skin, GI at the same time. Your eyes, your lungs affected. It's very normal to have two or three different forms at the same time.
Audience: Okay. Thank you.
Moderator: Last question.
55:22 Do healthcare professionals know when and why GVHD affects different parts of the body: [Audience]: My name is Lisa, and I have about 18 years experience with GVHD. My daughter had it for 18 years. So is it a fact that you guys still do not know when and how it moves in the body? So in other words, my daughter had GVHD and was chronic for 18 years. But it moves in the body. You don't know. I mean, my daughter was four years out of transplant, going to college, managing GVHD in her skin, eyes, and gut, and she came home from college not being able to breathe. So her GVHD moved overnight into her lungs. She became oxygen dependent. So is it a fact that you guys still do not know when it moves in the body and why?
[Khan]: So again, as it was mentioned in one of the slides in Katie's presentation, that you woke up and you have a skin rash all over your body, or you woke up and you are having difficulty breathing, or you woke up and you're not able to... You have dry eyes that was not present the day before. This is normal. Again, chronic can happen several months after, years after. So this is not unusual to feel symptoms like this. The best advice would be to call right away to your transplant team. Talk to your transplant nurse, navigator, and be in touch with your physician that I woke up today, it has been, I'm out transplant six months now. This just started. It is normal, and it is not unusual. But do report right away.
[Schoeppner]: I would just add that I think there is a lot we don't know. There are still a lot of mysteries around transplant, around the diseases that are transplanted for, on why GVHD develops when it develops for certain people. So yeah, there's still many things that the medical community, despite how far they've come, which is incredible, still don't know. The positive thing, the good thing, is that research is ongoing. We're working hard as a medical community to learn more and it has gotten better. The toxicities have gone down in terms of post-transplant complications, and we've come up with some new things that are helpful for GVHD, so we'll keep up that good fight because there is a lot we don't know.
Audience: Yeah, my daughter's pulmonary doctor is speaking today at the lung thing, but she is currently researching why it moves to the lung and how they can stop it.
Audience: So that's great news. Thank you.
[Schoeppner]: Good. Thank you.
Moderator: All right. I just wanted to say thank you to our presenters and to all of you for participating in this activity, and we'll give you a few minutes to get to the next session. Okay? Thank you.
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