Life After Transplant: Cultivating Resilience and Growing from Trauma

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Life After Transplant: Cultivating Resilience and Growing from Trauma

Thursday, May 5, 2022

Presenter: Stephanie Davidson PsyD, Westlake Village Counseling

Presentation is 41 minutes long with 18 minutes of Q & A.           

Summary: Many transplant recipients experience distress, anxiety, depression and/or post-traumatic stress disorder (PTSD) after transplant. This presentation discusses how to develop coping strategies and resilience to bounce back and experience emotional growth after transplant.

Many thanks to Sobi whose support, in part, helped make this presentation possible.

Highlights:

• Transplant is a traumatic experience and can cause emotional, mental, behavioral and physical problems. Almost 20% of transplant patients experience clinically significant symptoms of post-traumatic stress disorder.
• Resilience is the ability to bounce back, recover, and grow through difficult experiences. Grieving our losses and accepting difficult emotions are part of resilience. It is a skill that takes time to learn.
• When stressful symptoms interfere with daily life and relationships, professional counseling may be helpful.

Key Points:

(03:26): Distress is the most common mental health problem for transplant patients and may manifest as vulnerability, sadness, anger and/or anxiety.

(08:56): Depression can involve withdrawal, hopelessness, and guilt. Depression also brings a loss of interest in enjoyable activities.

(13:56): Symptoms of PTSD can include flashbacks, high levels of distress, memory difficulties, missing doctor appointments, avoiding family and/or friends, negative beliefs avoidance symptoms, negative thoughts, irritability, lack of patience, drinking and drug abuse.

(16:38): Risk factors for transplant-related PTSD include previous mental health diagnosis, trauma experience or serious physical injury, and lower access to financial and educational services.

(18:02): A strong support system, optimism, humor, successful life experience with difficult events, and effective coping strategies help people at risk of PTSD.

(24:15): Grieving our losses and accepting difficult emotions are part of resilience.

(28:39): Resilience may also foster spiritual development and a sense of meaning and purpose.

((32:48): Mindfulness meditation is a powerful tool for mental and emotional health

33:55): A good social support system consisting of people who are easy to be with is vital in recovering from transplant.

(36:04): Active coping accepts difficult things and looks for ways to grow from them. Avoidant coping involves denial, withdrawal, or self-blame and makes problems worse.

Transcript of Presentation:

(00:02): [Mary-Clare Bietila] Introduction of Speaker. Hello. My name is Mary-Clare Bietila and I'll be your moderator today. Welcome to the workshop Life After Transplant: Cultivating Resilience and Growing from Trauma. I'd like to thank Sobi whose support helped make this workshop possible.

(00:18): It is my pleasure to introduce today's speaker Dr. Stephanie Davidson. Dr. Davidson is a health psychologist who has worked with patients undergoing a stem cell transplant at City of Hope Medical Center in Duarte, California. There, she supported patients and families from diagnosis through treatment and into survivorship. Dr. Davidson is now in private practice and continues to work with those undergoing stem cell transplantation in Southern California, as well as those working their way through the challenges of long-term survivorship. Please join me in welcoming Dr. Davidson.

(01:01): [Stephanie Davidson]  Overview of Talk. Good morning, or good afternoon, wherever you find yourself. Thank you so much for having me today. I'm very excited to be here. Today, I'm going to be talking a little bit about the post-transplant process and mental health and specifically about trauma and how we can find resilience following transplants.

(01:26): So a little bit about what I'm going to talk about today. My goal is to talk a little bit about the emotional challenges that people face as a result of transplants. I'm going to go through a couple of different areas. I'm also going to talk about what resilience and emotional growth look like as well as strategies for growing resilience following emotional and physical struggles. And then towards the end, I'm going to talk a little bit about professional counseling and the roles of some of the different mental health providers and where to find them. So hopefully that will be helpful.

(01:59): Many transplant recipients experience distress, anxiety, depression, and even post-traumatic stress disorder. So first, I want to just give a little bit of an overview about some of the emotional challenges, and how we talk about it in mental health, related to transplants. So we have a few different areas here. The first is the area of distress, which is a large category, and that's really not something that we would diagnose. It's not a mental health diagnosis, but more about the mental struggle that people are facing following transplant. So that really catches a lot of people who are facing any emotional difficulty and stress following the transplant process.

(02:34): And we're also going to talk a little bit about anxiety and depression, which are diagnosable mental health conditions. Some people meet diagnostic criteria, others will not, but that doesn't mean that many people who go through the transplant process don't face symptoms of both anxiety and/or depression through the process.

(02:55): And then, I think what's really helpful is we're going to talk a little bit today about post-traumatic stress disorder. We hear that term thrown around a lot. PTSD is out in the general vernacular and is something that comes up a lot, but most people don't really understand what it is. So I'm going to try to talk a little bit about specifically what PTSD looks like, what those symptoms look like and how we can cope if we run into those over the survivorship process.

(03:26): Distress is the most common mental health problem for transplant patients. When we talk about distress, again, this is a very general category. What we understand is that it is the most common experience for transplant patients. Unfortunately, what we also know from the research is that it is the most under-reported side effect of treatment. So a lot of people are focused on nausea and vomiting and muscle weakness or just physical changes. And unfortunately, the mental health side of it isn't necessarily asked about quite as often. I think it's getting much better, but it's something that needs a lot more focus as we move forward. So when we talk about any stress or distress following transplant, this is what we're talking about.

(04:06): Distress can involve vulnerability, sadness, anger, and anxiety disorder. And that can be a range of feelings. For a lot of people, there are feelings of vulnerability, a lack of trusting one's own body, being reliant on the medical system, so feeling very sensitive in that way. Also sadness and anger are often very natural parts of this process, as people process everything that has happened to them. And that can then transition to more diagnosable mental health concerns in depression, anxiety, panic attacks, which just falls under anxiety disorders and post-traumatic stress, which is also an anxiety disorder.

(04:48): When left unaddressed, the biggest concern that we have is that it impacts how people are functioning on a day-to-day basis, their ability to engage with the people in their lives, being able to engage meaningfully with their work. And so these kinds of symptoms definitely impact how much people are enjoying their life after everything that they've been through. And obviously that's something that we want to address, and it can be addressed very effectively with the right tools and resources.

(05:18): So when we talk about the common signs of distress, these common symptoms that we see for people after they've gone through a transplant experience, we see a lot of crying. Obviously, that's one of the ways that we dispel emotional feeling. So crying is a very normal part of the process.

(05:34): Fatigue, lack of motivation, and moodiness are common following transplant. Feeling under the weather, and what I mean by that is talking a little bit about [being] run down, maybe lack of motivation, just not feeling great. A lot of fatigue shows up for a lot of people. So all of that can definitely show up under the category of distress. And there's a lot of overlap between that and some of the physical symptoms people experience.

 (05:56): We also see a lot of people who are tense, jittery, irritable, moody. So it's like their resources are low and their emotions are high. And so our tolerance for discomfort becomes much less.

(06:11): The transplant experience can also disrupt sleeping and eating routines. We also see a lot of changes for people in sleep and eating, especially as they come out of the hospital. A lot of people have their days and nights backwards when they come out of transplant. And so trying to get people back on track in terms of being able to eat normally again and being able to sleep through the night is an important part of the process as well.

 (06:33):  And one of the things we know is when people are distressed and they're uncomfortable is they begin to avoid people. They avoid activities because they feel so overwhelmed. But they also tend to avoid things related to their transplant, could be cancer, could be a transplant for other reasons, experience. So any medically related experience may be something people begin to avoid. And I'm sure you understand that that is concerning because we want everyone to be able to make it to all of their follow up appointments and stay healthy after the process.

(07:07): People who are experiencing distress also are looking for a lot of reassurance. So that may be frequent phone calls into the nursing station to ask questions; that may be more frequent doctor's appointments because you're worried about this ache or this pain or this level of fatigue. So it's just this feeling uneasy in your own body and seeking out reassurance that you are okay.

(07:34): Restlessness, a sense of being in danger, and fear of the unknown after transplant leads to fatigue, which in turn can lead to irritability, difficulty concentrating and muscle tension. When we're talking about anxiety, we're talking about a very specific cluster of symptoms. And again, this is the sense that our fear center has actually been cranked up. And from that, comes a sense of restlessness. It's very difficult to get settled, to sit comfortably, to settle in for bed at the end of the day. There's a sense of being in danger and very unsure about what's coming next. Of course, being this turned on also leads to a lot of fatigue. People are quite tired and just get worn out. It's also very difficult to concentrate when you have all of these things on your mind, and it's very natural to feel irritable and edgy in that process. People often also tense their muscles, which can cause some muscle pain and discomfort.

(08:24): And we see worrying as a very common symptom that coincides with this being turned up feeling. We also sometimes see people with an increased startle response. So you're walking down the hallway and somebody comes around the hallway and you jump to the ceiling. All of this is just this sense that your nervous system is really overwhelmed. And obviously that can also cause problems with sleep and eating. And so we see these secondary symptoms that come along with that as well.

(08:56): Signs of depression include feelings of hopelessness, lack of control and survivor guilt. When we're talking about depression, this is more... If you think of anxiety as turned up, you can think of depression as more turned down. So there's this withdrawal that tends to happen. There's a lot of hopelessness that goes along with that and a feeling that things are very out of control, which is a very normal part of going through a transplant. And when things feel out of control, people often feel helpless. And so that is something that shows up in this cluster of symptoms around depression.

(09:27): Some people begin to feel very guilty about the resources they're using, about surviving maybe when other people haven't, about calling their doctors, all sorts of things come up in the area of guilt. But understanding that guilt is a sign of depression and it's something that we want to watch for. If it's something that's showing up excessively, that's something that we want to address for sure.

(09:49): Depression can also cause loss of interest in activities previously enjoyed. We also see a loss of interest. And what I mean by that is a loss of interest in things that you used to enjoy doing. So if you were an artist and you enjoy drawing or painting, now you do it but you are not getting the joy from it that you used to. And so whatever activities you're engaging in, whether it's alone or with other people, it's just almost like there's a cloud over the top of you. And it's very difficult to engage in them in the same enjoyable way that you used to.

(10:17): And again, we see obviously sadness, but with sadness is often irritability, this edginess that comes along with it. And memory and concentration when we're feeling all of this is often very difficult and our brains can feel cloudy.

(10:33): So when we transition into talking about trauma, I'm going to talk about symptoms in categories rather than go through a lot of detail in each one of these categories so you can understand more big picture, but there's obviously examples under each of these. So when we talk about people being exposed to trauma, we have some very normal symptoms that we see. So what I'm going to talk about now are normal symptoms for anyone who has been exposed to a traumatic experience and transplant is considered a traumatic experience. One's life has threatened potentially in some way, and this is the result of that trauma exposure.

(11:15): Transplant is a traumatic experience and can cause emotional, mental, behavioral and physical problems. So we have emotional symptoms, which are different than mental. We also have behavioral, which are different than physical. So I'm going to break those down a little bit.

(11:25): Common emotional problems include anxiety, sadness, mood swings and a sense of loneliness. The emotional symptoms are more about the emotions we feel. So anxiety, sadness, loneliness. We can sometimes see mood swings. So these are more feeling states and mood states that show up. From that, we can sometimes get a sense of numbness and nightmares that come. Again, this is more about that being turned up or turned down. That's more in this emotional category, which is different than mental symptoms.

(11:51): Mental problems due to trauma include difficulty with memory or concentration and being easily distracted. Mental symptoms are more about how our brain shows up. So are we having difficulty with concentration, with memory? Is our mind lost in worry and we're having a hard time not getting distracted? So that's really more about how our brain shows up on a day-to-day basis.

(12:11): Behavioral problems due to trauma include being argumentative, aggressive, extremely sensitive, and excessive crying. How we show up in the world is more the behavioral symptoms. So are we argumentative with other people? Are we aggressive? Are we crying? Are we super sensitive? Are we easily startled? Are we not eating? So these are the behaviors that we see when people are going through something traumatic.

(12:29): Physical symptoms of trauma include fatigue, stomach upset, nausea, vomiting, and hot flashes. And then finally, we have physical symptoms. So again, what our body experiences as a result of being exposed to something traumatic. And that can show up as feeling tired, fatigued, sometimes a lot of stomach upset, so that can sometimes show up as nausea and vomiting or diarrhea. We also know that distresses link to hot flashes. So for those people who experience them, they often get worse when they go through something difficult. So these are the categories of normal things that we see when people are exposed to trauma. So it would not be unusual for these to be things that you have experienced at sometime during this process.

(13:10): Normal trauma responses can escalate to post-traumatic stress syndrome (PTSD). So then the question becomes, what happens when we go from these normal trauma responses to what we consider post-traumatic stress symptoms? And those are also broken down into four categories. So we have what we call intrusive symptoms, which are something new that's added to our experience of the world. We have avoidance symptoms, the way that we tend to avoid things that are uncomfortable. We have negative thoughts and moods, which is more this emotional piece. And then we have what we consider the arousal and activity. So this is more about how we show up in the world. So, this takes into account some of the behavioral pieces, as well as some of the physical responses.

(13:56): Symptoms of PTSD can include flashbacks, high levels of distress, memory difficulties, missing doctor appointments, avoiding family and/or friends, negative beliefs avoidance symptoms, negative thoughts, irritability, lack of patience, drinking and drug abuse. So I'm going to go through these briefly. And again, you can obviously see them here. So the intrusive symptoms are things, again, that are added. So these could be things like flashbacks to experiences of maybe diagnosis or the transplant process, a high level of distress. So feeling really riled up, having a hard time settling. We also see things like difficulty with memories of difficult parts of the transplant process.

(14:31): And then we also see these avoidance symptoms. So the avoidance is more about missing doctors' appointments, not taking phone calls, maybe avoiding people in our lives, friends and family as well.

(14:44): The negative moods and thoughts are more of the anxiety, the depression, negative beliefs. It can also be feeling disconnected from the people around us, this lack of enjoyment in activities that we used to enjoy.

(14:59): So a lot of the things we talked about in the distress, anxiety and depression categories, as well as then the arousal and activity, which is more about how we show up in the world again. So this anxiety can cause irritability, a lashing out, a lack of patience with other people, problems with concentration, being on guard. We can have this increased startle response, and we can also see, for some people, an increase in unhealthy coping, things like drinking and drug abuse as well in that category.

(15:38): in order to be diagnosed with a PTSD diagnosis, someone would have to actually have symptoms in all four of these categories. Now, just because someone has just a few of these categories doesn't mean that it can't be treated effectively or shouldn't be treated. But just to understand that in order to receive a formal PTSD diagnosis, it would be something in all four of those categories.

(16:01): Almost 20% of transplant patients experience clinically significant PTSD symptoms that affect their daily life. So let's talk a little bit about some of the risk factors for people as they go into transplant. We know that transplant in and of itself is a risk factor for PTSD. As I mentioned, obviously, the life-threatening nature of whatever illness you have going into transplant, as well as, obviously, the risks of transplant itself are considered traumatic. And so, from people who go through transplant, we see a little under 20% of patients actually show clinically significant, meaning they impact their day-to-day functioning, symptoms that show up following transplant.

(16:38): Risk factors for transplant-related PTSD include previous mental health diagnosis, trauma experience or serious physical injury, and lower access to financial and educational services. And those folks who are more likely to be diagnosed with PTSD following transplant are those folks who come in with some, what we consider, risk factors. And those risk factors are previous mental health diagnoses, previous experiences of serious physical injuries, lower financial and educational resources available to them. People who've had previous trauma experiences also are at greater risk for PTSD and following traumas. So that's what they're alluding to when they talk about people being hurt or killed. Also a sense of hopelessness and fear. A lot of high levels of fear correlate with high levels of PTSD following transplants.

(17:25): So those people who are really struggling going into the process tend to struggle more during the process. And a lot of that has to do with their ability to cope. So when they talk about managing difficult stressors, people who have lower levels of coping strategies are those people who tend to struggle more during the process. And also people who have limited support. So if you have less support, and that's really about perceived support, not number of people. So if you feel well supported, you tend to do better. Even if you have a 100 people and you don't feel well supported, you tend to struggle more.

(18:02): A strong support system, optimism, humor, successful life experience with difficult events, and effective coping strategies help people at risk of PTSD. Some of the things that help people are support groups, having good family and friends. Again, not many, but just the really good solid support system. Not feeling badly about themselves as they go into the process. So not having guilt or shame or feeling embarrassed about what they're going through. Obviously having sense of humor and being generally optimistic are things that are helpful. Those are good coping strategies. So that's why that tends to transition into a better coping response through the process. And having more life experiences where you've dealt with difficult things in the past and have made it through doing well sets you up for coping with new stressors. So that's why if someone has had difficulty in the past and has coped well with it, they tend to do well during the transplant process.

(18:55): Medical tests and procedures, doctor appointments and anniversaries of dates related to diagnosis and treatment are stress factors for transplant recipients. So, the most difficult periods in any major medical treatment are these three categories. So the first one is, any of the ongoing things that you face. Those can be blood tests, they can be scans, doctor's appointments, anything that reminds you of the medical process can definitely cause a higher level of arousal and anxiety and depression. And so we definitely see people struggling with those.

(19:26): We also understand that anniversary. So that could be the anniversary of diagnosis, that anniversary sometimes of transplant, of getting out of the hospital. So for each person it's different, but when we hit these milestones, especially in the first year, that can be very, very difficult for people.

(19:42): Changes in treatments, healthcare providers and insurance can be stressful for transplant recipients. And as people go through transitions, for a lot of people, particularly the transition out of treatment, it can be very difficult. But we also know that as you may switch medications, if you have to switch doctors, all of those kinds of things can be very difficult and can cause, again, an increase in emotional stress that you're seeing.

(20:04): And obviously, not just related to medical pieces, but obviously life transitions as well. So if you see some change in maybe your health insurance or your life insurance and resources that are available to you for family planning or your job changes or your relationship status changes, all of those kinds of things can obviously increase your stress or difficult periods related to your medical treatment as well.

(20:35): Learning about new people diagnosed with the same disease or other patients who have passed away can be stressful for transplant recipients. Obviously, new events. And here, I focus primarily on understanding the impact of other people's treatments on your own perception of yourself and your own safety. So if other people are diagnosed with something similar to what you've gone through, that can be difficult, even if it's just somebody on TV that you don't actually know. So a lot of times when celebrities are diagnosed with a major health concern, I have a lot of patients coming in talking about what that's bringing up for them. So that is not unusual at all.

(21:06): And obviously as you're going through this process, you meet other transplant patients and some, unfortunately, pass away. And when they do, that can be a very, very difficult part of this process. And for yourself, anything related to changes in your health, it may be related to your initial diagnosis, or it could be something related to a new health problem, that can definitely increase people's anxiety. And we can see some of these symptoms start to show up at those periods as well.

(21:39): So now, I want to talk a little bit about resilience. So we see all of the challenges that people are facing and what do we see in those people who make it through this process and seem to do better emotionally? So I want to talk a little bit about what resilience is.

(21:55): Resilience is the ability to bounce back, recover, and grow through difficult experiences. Resilience is really this idea of being able to bounce. So we bounce back, people who are able to recover emotionally from what they've been through. And in terms of post-traumatic growth, we're really talking about people who move not only from the struggle and bounce back to their previous level of functioning, but there's actually a level of growth that happens. So they learn new things about themselves. They learn new things about the relationships. I'm going to go through this in more detail, but they really have this sense that in some way, their life has changed in a positive way as a result of what they've been through. People have a mixed feelings about the different terms that are used, silver linings and things like that. But we're really talking about how people have this sense of positive things coming from the difficulties that they've faced.

(22:47): One form of trauma resilience is finding new paths and possibilities. So there's five areas of trauma resilience that we're going to talk about. The first of those is finding new paths and possibilities. So that's really about your relationship, primarily, with yourself. So understanding that you've been through something very difficult and how has that changed your perspective on your own life. Have you decided to take more risks? Have you decided to take a new path? Has this forced you onto a new path? Obviously, part of this is also adjustment to doors that may have closed as a result of what you've gone through and having to step away from your life in some way.

(23:34): So this is really about finding a new path for yourself. And when I explain it, I often say to people, it's like you're driving along in your life, and all of a sudden you get diagnosed with something and you make this right hand turn out of your life as you knew it, and you're on a new path. And it happens often quite unexpectedly for people. And so now you've taken this right hand turn and you've ended up in the middle of nowhere where you didn't want to be. And when we're talking about this new life and possibility, it's really about trying to move back towards that initial path. It's not going to be the same path. It's like, we're going to rejoin the road ahead and find a way back to the things that are important to us.

(24:15): Grieving our losses and accepting difficult emotions are part of resilience. But understanding that, underlying that, there are losses. And so it's both about finding new paths, but also a willingness to grieve the losses associated with any major medical diagnosis and transplant experience. Increased personal strength is, again, about our perception of ourselves. So it's really about understanding that we've faced something challenging, and that we've learned something. We understand that we can rely on ourselves, that we can cope better than maybe we thought we could, that we can do hard things, that we can problem-solve better than maybe we gave ourselves credit for, or we found a way to problem-solve when we weren't that great at it before.

(25:01): So we understand that there's been a lot of significant changes in our lives. And the goal is to really start to understand what we've learned from it and what we've learned about ourselves in the process. And in this process of growth, one of the things that's very important is also to make room for, as we talked about before, grief, but also the difficult emotions. This is not a straight shot. So when you're learning to handle these challenges, you're learning that because difficult emotions are coming up, you're struggling in some way, and you're trying to figure out ways to cope actively with those struggles. And so we need to learn our personal strengths in being able to tolerate difficult things that maybe we used to avoid, and now we can learn to sit with.

(25:50): Resilience involves accepting our experiences and the support offered by others. And part of that is, obviously, acceptance of our experiences. So this also changes our relationships. So people who are resilient often find ways to accept support. We know in studies that people are much better at offering support than accepting support. And so one of the big life lessons that people often get from transplant is that they can't do things alone, which can be scary, but they can also learn that they can rely on other people. And when you start to learn who those people are, that can really enhance your relationship in some important ways. So you've been able to be vulnerable, they've been able to show up, and that can create a lot greater sense of meaning and connection in those relationships.

(26:48): Resilience also means developing a greater appreciation of life and practicing gratitude. A greater appreciation of life is exactly what it sounds like. It's really understanding that each day is precious and even the hard days are important because each day that one gets to be here, we get another chance to show up in a meaningful way. And so this is really about gratitude practices. So what I would say is we have a lot of research that suggests that people who actively practice gratitude, pay attention to what they're grateful for on a daily basis, tend to experience more joy in their lives. So we know that people who've been through something traumatic, when they are able to actively practice gratitude, they tend to have more joy in their lives and are more resilient.

(27:38): That's not always easy to do because obviously a lot of other things come up, and it's not about ignoring those, it's just adding an "and yes, I had to go do a scan today and it made me really anxious, and I'm grateful that I got to see my doctor because he or she really reassured me that things are going well." So it's about seeing both sides of the coin.

(28:02): It's also about being willing to take risks once we recognize that we're lucky to be here. So are we willing to do the things that we might have been afraid to do before, and really suck everything out of every day in every way that we can. And that's not about adding pressure, it's just about a change of perspective. So it's not about putting so much pressure on yourself to be a better person, but really about trying to change our focus in terms of, again, gratitude and opportunity.

(28:39): Resilience may also foster spiritual development and a sense of meaning and purpose. And then we see a lot of people who see a lot of development in their spiritual lives as a result of transplant. This is really about meaning and purpose. So finding ways to engage in their lives in ways that align with what's important to them. How can they engage in a job that aligns with their values? How can they have relationships with people that they feel connected to? How can they connect to the larger world in a meaningful way? And obviously spiritual practices are a wonderful gate to those kinds of meaningful connections with themselves, with the world, and for some people, with a higher power as well.

(29:22): Resilience changes our perspective about formerly difficult challenges. A lot of times in this process, people start to recognize that some of the things that they may have gotten stuck on before seem less important. So those day-to-day struggles, we get a different perspective. They're still hard some days, but we are, again, grateful to be here and understand that there's a lot of harder things in life than whatever we're facing at that moment. It could be something trivial, but it's really understanding that we have a different perspective.

 (30:03): And some people really do need to seek some outside counsel in this area. Some people definitely face emotional and spiritual crises during transplant. And so one thing that I do encourage people to do is that if you are struggling spiritually, it can be very, very helpful to seek outside spiritual counselors to help you through whatever questions that you have, because sometimes, that's a hard road to navigate on your own.

(30:33): Self-compassion, finding meaning, and experiencing gratitude build resilience. So some things to keep in mind about resilience. Growth can be uncomfortable. So all of the five things that I talked about may sound easy on paper, but in practice, they are not easy to do. So I think it's really about adding some self-compassion to all of this. These are intentions, they're not rules. So the intention is to find things that are more meaningful. The intention is to be more grateful. But understanding that there are going to be days where this is very, very difficult to do, and being willing to lean into that challenge rather than avoid it, because we know that avoiding tends to make our negative emotions worse. Avoiding also doesn't give us an opportunity for growth. So are we willing to lean in even when it's hard? Seek help when we need it. And explore different ways to grow our resilience.

(31:36): We may try something and it doesn't work and we may have to go in a different direction. So if we try to lean into certain relationships and those people are not able to show up for us in the way that we had hoped, then are we willing to still let other people show up for us and ask someone else? And that is not always easy to do.

(32:00): And I would say really looking for signs that you're changing is important, because often on a day-to-day basis, we don't see the change. And so, one of the things we can do is really actively look for the ways in which we're growing. And some of the places we can look for those signs of growth are in our relationships with our family and friends, in the way that we're engaging in work, in the things we're getting involved with in the world. So as we start to see ourselves trying new things, we can see those changes happening and we want to actively look for those.

(32:35): So obviously you guys can read, I'm not going to read all of these coping mechanisms, but these are some of the ways that people can help themselves cope through difficulties. And I'm going to highlight a couple that I think are particularly helpful.

(32:48): Mindfulness meditation is a powerful tool for mental and emotional health. Meditation has been shown in studies to be very helpful in allowing people to be present in the present moment, to regulate their anxiety and depression. The kind of meditation that has been found to be most helpful in these areas in the research is mindfulness meditation. Lots of different kinds of meditation are helpful, but mindfulness meditation has a particular focus on being in the moment that has been found to be helpful for transplant patients.

(33:19): Other coping strategies include play, exercise, and eating well. I think play and creativity are also very, very important when we are coping with stressful situations. And so, I would definitely encourage you to find ways to play, find ways to be creative, get those creative juices flowing. All of those things are very, very important in combating stress responses. And again, that's very well supported in the research.

(33:44): Obviously exercise, eating well, doing things that are soothing to you are all very helpful things to do as well.

(33:55): A good social support system is vital in recovering from transplant. It's very important to have good social support. So it's also important to understand who in your social support system is the best for different jobs. So when I explain this to people, I say, there's people in your inner circle, and then we go out in rings from there. And sometimes, people in your center circle show up for you in ways that are really awesome. And you appreciate that. Not everyone that you expect to show up for you in that way may be able to. So part of it is about being able to understand how close to that center circle you want to allow people to be and relying the most on those people who are most central to your support network.

(34:38): Sometimes, there's also a process of finding some forgiveness for those people who have not been able to show up. And we know that that is also a part of resilience. That doesn't mean you have to in invite them back into your center circle, but it is about finding your own way to move forward. It doesn't mean you may even have a close relationship with that person, but it's really about harboring anger there can often be a difficult place for you.

(35:05): A good support system consists of people who are easy to be with. So what you're looking for is people who are easy to be with. They're with you on your good days and your bad days. And they're willing to sit in the background. They don't feel like they need the accolades. They don't need to be doing something. They can just sit with you and be present with you. And whatever way you show up is okay with them. They are comfortable with the idea that sometimes this doesn't have an end point. A lot of people struggle with the idea that family members and friends look at, like the transplant is over. We're done now. And for patients, that's obviously not the experience. You have ongoing medical care, ongoing anxieties, things that you're working through. So understanding that what you want to find in your social support is people who can understand that this is an ongoing process and can provide you feedback on that process, feedback that you can trust and can be delivered in a sensitive way.

(36:04): Active coping accepts difficult things and looks for ways to grow from them. So in terms of coping strategies, we really want to look at active coping. So active things that we're doing. So understanding that there are problems that you may be facing as a result of your transplant experience emotionally, and really trying to take active steps, understanding that this is a normal part of the process, and trying to look for resources that will help you.

 (36:33): You really want to focus on your perspective. We know that it's helpful, as an active coping strategy to understand that difficult things happen, and to try to focus on a new perspective what can grow from there. So it's not denying that it was hard, but it's about trying to figure out where the growth can happen, and really being in tune to how you're feeling. Because however you're feeling, you want to be able to show up and support yourself and find other people who can support you.

(37:07): Avoidant coping involves denial, withdrawal, or self-blame and makes problems worse. What we don't want to do is avoidant coping. So we don't want to deny that you're struggling. We don't want to withdraw from the people who can support us. We don't want to do things like get involved in drugs and alcohol, again, because that's just a numbing strategy. Or blame yourself, being all over yourself for not doing a good job. It's really about being self-compassionate and finding others who can provide compassion to you.

(37:33): When stressful symptoms interfere with daily life and relationships, professional counseling may be beneficial. And just as I'm finishing up, I want to talk a little bit about professional counseling. So anytime that you start to see any of the symptoms that I talked about, interfering with your ability to love, work, and play, so have relationships with other, engage in meaningful activities and have fun in your life, we know that it's time to potentially get some help, especially if you start thinking about suicide or self-harm, or if the symptoms that you're having are impacting your medical care or a meaningful engagement in your life.

(38:10): And some of the folks that you can see are therapists, who include licensed professional counselors, psychologists, licensed clinical social workers, marriage and family therapists. So those are some of the people that fall into that category of therapists. And they do talk therapy.

(38:30): Psychiatrists prescribe medications. Some also do some talk therapy, but primarily, their area of expertise is in medicine related to mental health. You can look to your medical team. Sometimes they are willing to prescribe some medications early on in the process. They can also help with you to mental health professionals.

(38:49): Support groups are an important resource. And of course, support groups are a great way to meet other people in your community and get support. I often recommend that you try to find a support group with a professional provider, meaning some therapist who's running the group, because that often is the most helpful context for getting help.

(39:07): BMT InfoNet has a directory of mental health providers. And here's some places where you can find professional counselors specifically. You can obviously ask your medical center. Many keep list of providers in the community. BMT InfoNet has actually put together a mental health directory, which I think is really wonderful. And so you can go onto their website and find providers in your area. You can reach out to your insurance company and ask them specifically for providers who specialize in health related concerns. State and local psychological associations can also be helpful. And there's a great website called Psychology Today that allows you to find providers in your area that accept your insurance. And you can filter by what you're looking for.

(39:52): There are also some good reading resources like the Post-traumatic Growth Workbook. I'm going to finish up with some recommended reading. So if you're interested in learning more about some of the things that I talked about today, Upside: The New Science of Post-traumatic Growth is a great book and it is written for the general public. It's not specifically for mental health providers. The Posttraumatic Growth Workbook is the same. That's actually a place where you can work through some exercises. And I find that to be very helpful for a lot of people. And a lot of the information that I talked about today came from the book Posttraumatic Growth. And so that may be something that you'd be interested in looking into.

(40:30): So with that, I'm going to go ahead and finish up and open it up to some questions.

Question and Answer Session

(40:37): [Mary-Clare Bietila]   All right. Thank you, Dr. Davidson. That was an excellent presentation. And you're correct. We're going to take some questions now. We have lots of questions. This is great.

(40:54): Our first question is about COVID. They first off wanted to thank you for a validating presentation. And this individual is one year out from transplant. "As the norm changes for many people who are not immune suppressed, I have some anxiety about figuring out what activities to do. I've done some of the information finding with my medical team about the how to interact with the world, but specifically the anxiety of making a wrong choice and getting an infection has been tough." And they're curious if you'd seen any resources or interventions that help specifically with this transition time, pandemic, endemic, post-transplant.

(41:46): [Stephanie Davidson] I don't actually have access to this directly, but I can make it available to the team. I do have some COVID related resources, specifically within acceptance and commitment therapy background. So I'm happy to include that and see if that can be included when people download the presentation. Or you're welcome to reach out to me directly. I'm happy to email anybody who would like that information. But I would say, I think starting with your medical team is important. Absolutely. So get the guidelines in terms of what they are recommending, obviously that is continuing to change based on what the CDC is recommending.

(42:26): But I think the most important thing is to take it slowly but be willing to try. So once you identify those places, if it's seeing people outdoors or masking and seeing people in small groups, once you are able to do those things, it's really about the willingness to try. Because the more we avoid, the more anxious we tend to get.

(42:50): So once we identify what activities can be done as safely as possible, there's no way to eliminate all of the risk. Almost we're going to stay alone, which we know from a mental health standpoint is not the best choice. So we're trying to mitigate our risk and find ways to push ourselves to try. And so usually what I say is, try to pick something moderate, not difficult, to easy to try first. So don't put on a mask and go out to a huge music festival, probably not a good idea health wise, but anxiety wise, it's also not great.

(43:23): So start with something that feels manageable. Try that practice. The easier it is to get out and do the things that feel a little easier, the easier it will be to do things that get a little harder. So it's really about an exposure model. So just trying in small steps to get out into the world again and to be around people. And it doesn't have to be many people, but you do have to have those people in your center circle that you can still access at this time.

(43:51): [Mary-Clare Bietila] Our next question. This particular person is curious about how they accept life as it is now. "Acceptance feels so important to me. Being able to focus on the things that I can change, enjoy and live with. Are there any specific resources, books, websites, or interventions that you have found to help with acceptance of the new normal?"

(44:20): [Stephanie Davidson] So I think acceptance absolutely 100% is very, very important. There's a book that I found really helpful called A Liberated Mind. It's by Steven Hayes. It is a book specifically written about acceptance and commitment therapy. There are quite a few, what they call, act workbooks that can also be helpful as well. It is a therapy based in the idea of acceptance of things that we don't like, being part of the human process and how do we move through those. Because our tendency is when we hit something we don't like, we want to stop. And how do we say this is something we don't like, and I'm going to keep going.

(45:03): And so those can be some really, really helpful resources in trying to move through that. And all of those can be found on Amazon or Barnes & Noble, but you're looking specifically for workbooks on acceptance and commitment therapy. I think you'll find those helpful.

(45:19): [Mary-Clare Bietila] Okay, great. Our next question is, "How do I talk with friends and family about AML? Everyone seems to expect that once sick, you get help, then you're cured. I don't want to be Debbie Downer, but remission is not a cure. How can I talk to them about the constant anxiety and change?"

(45:42): [Stephanie Davidson] That's a really great question and something that comes up for a lot of people. So I think having those conversations in smaller groups is most helpful. So if you're at a family function, there's a lot of people around, that can be a hard time to have that conversation, or if you're with a larger group of friends. So it's usually trying with smaller groups so that you can really start with, first of all, helping people to understand that while you went through treatments, you want to let them know, "While I went through treatments, I'm finished with that treatment, but my ongoing maintenance of my health continues. And there are ongoing treatments that I'm going to need, ongoing scans that I need." And that that part is not always easy. So just helping them to understand that while you finish the end of the transplant process, that this ongoing treatment is continued care for your AML.

(46:39): And I think a lot of people don't understand that. So just helping them understand first that that is one part of the treatment that the treatment is ongoing, is an important part. Even if you're not taking medications, the monitoring of your health, your blood work, all of those kinds of things are ongoing parts of your treatment. So helping them to understand that your treatment is ongoing, the monitoring is ongoing, and just being honest about the fact that when those appointments come up, it can be anxiety provoking and difficult. And a lot of people can understand that if you can sit down and have that one on one but understand that you also don't need to go into all the details about what the monitoring is. Just to give them a large picture is often helpful. I hope that helps.

(47:26): [Mary-Clare Bietila] Absolutely. So our next question, I'm going to broaden out a little bit. So this person has asked about how you find equine or horse therapy. I'm also curious about support pets and animals after transplant or during transplant. If you wanted to take some animal questions, that would be great.

(47:51): [Stephanie Davidson] Yeah. So you can actually look up equine therapy. I don't have any specific resources because most equine therapy that I've encountered is out of very specific places. So specific organizations. You don't want to look for horses, you want to look for equine therapy specifically. I believe if you are in Southern California, there is a place in Pasadena. So that's helpful for folks who are in my area. But from there, I would definitely be looking for equine therapy near me and trying to contact those folks. And when you contact them, making sure that you're asking questions about what equine therapy do they specialize in? Are they working with people with physical disabilities, mental health concerns, so that you're trying to find an equine therapy that matches with whether you're struggling with emotional concerns or physical concerns, they have experience in that area.

(48:49): But there's quite a few places, and I think it's very, very helpful. We know that having pets is good for our mental health. I will be honest and tell you, one of the challenges for a lot of transplant patients is that doctors get concerned about people getting sick sometimes from pets. So it doesn't mean you can't have your pets, but I always encourage you to talk to your medical team because sometimes they have some guidance on how to interact with your pets in the safest manner, just to not increase your chance of infection. But I am a big advocate for people spending time with animals when it's safe to do so, because we know that they do help moderate anxiety. They also help to elevate our mood.

(49:34): And they also provide companionship and they tend to get us out of our houses in doing things and being a bit more active, whether that's taking our dog for a walk, or even if you're sitting on the floor, playing with your cat, all of those things get us up and about and engaged in life in an important way. So I think those are great resources for people who are struggling.

(49:57): [Mary-Clare Bietila] Okay. All right. Our next question is, "My doctor is leaving. I realize it was a team that saved my life through transplant with AML, but I have established trust with him. What can help with the anxiety about getting a new doctor? What if I don't get along with the new doctor?"

(50:17): [Stephanie Davidson] This is a really tough question. I empathize. It's very difficult when you have that one person and they're the face of your treatment team, and yes, there's a lot of other people involved, but they are your person when you're going through this process. And someone that transitions, that's very, very difficult for everyone. I think really, I would say, giving the new person a chance, getting to know them a little bit, you can go in with whatever questions and anxieties that you might have to that first appointment. I highly encourage you to write down a list of questions before you go into your first appointment with the new doctor.

(50:57): Any follow up pieces that you wanted to make sure got addressed from your last appointment with your previous doctor to this doctor, whether that be a blood test or making sure a scan gets done, just so that you feel like you have some control in the conversation and having those things written down can be very, very helpful. Give that person a chance, get to know them, ask them any questions that you have about how they work, especially if there's something that's important to you. Maybe the frequency of your scans or frequency of your blood test, making sure that they're on board with whatever you have worked out with your previous doctor, I think is really important.

(51:34): And I am of the belief that your medical team and your relationship with your medical team is incredibly important. So if it does turn out that that is not a good match, then I encourage you to get another opinion. It's okay to look around if you don't feel like your match with your particular provider is the right fit, because this is a long-term relationship. Unfortunately, we are stuck with our doctors for the long haul. So that can be unfortunate and fortunate. If you have a good relationship, then they can be a great source of support and reassurance. And so it's important to have that relationship and a good solid relationship with your doctor as you move forward.

(52:17): [Mary-Clare Bietila] All right. Thank you. The next question is, "For people weathering the emotional roller coaster that is bone marrow transplant, what options do people have for counseling if they don't quite fit into a billable diagnosis code? Do some insurance companies make allowances for life changing events?" I think this person's just concerned that if they sought out therapy, that it would not be covered by insurance.

(52:47): [Stephanie Davidson] So there is a whole category of options for your provider to check off what's called an adjustment disorder. And so an adjustment disorder is essentially anybody who's adjusting to a major life stressor and having difficulty. That is covered by every insurance company that I've encountered up to this point, and I've been doing this for a while. So there is definitely a category of diagnoses that we can use when it's not a diagnosable depression or anxiety that will allow people to be covered.

(53:19): And it's definitely something that you can ask any provider that you see, is to have them help you understand what they will be using as their billable code to ensure that it's covered by your health insurance. And that should be something that any provider feels comfortable talking to you about. So feel free to ask questions when you set up your appointment, and they can talk you through that and help you ask your insurance company any questions you may have for them.

(53:47): [Mary-Clare Bietila] Great. Okay. Another question is, "After seven years post-transplant with many severe complications, I'm losing my disability status and must go back to work. I just don't know how to lose the I'm ill mentality and act like I'm well."

(54:08): [Stephanie Davidson] Yeah. Obviously, that's a big transition. And so as I mentioned earlier, those kinds of transitions are very difficult and require a new set of coping strategies. So the first thing I would say is if you are struggling with that, I definitely think that's a place where seeing a therapist could be very, very helpful. A lot of times, I get people who are post-transplant five years or more who are making those kinds of transitions. It's not necessarily a long-term therapy, but it's really about changing your focus and having somebody to coach you through, recognizing when you're getting stuck in that.

(54:49): But I think really it's about being willing to try. So I think willingness is a big thing that I talk to patients about all the time, is about being willing to give it a try and then see where you go from there. So understanding that you're going potentially to face some challenges, and that's really normal in the process, whether those are physical or emotional, but if you're willing to try, then there's an opportunity to adjust from there and try to figure out how to face the challenges rather than avoiding, which tends to make our anxiety much, much worse. So I hope that that's a helpful answer to that question.

(55:28): [Mary-Clare Bietila] That's really helpful. So we're running out of time and we've got one more question we can ask today. And that is. Do you have any recommendations for how patients should approach or interact with providers who do not appear to be taking their concerns seriously?

(55:50): [Stephanie Davidson] So I think there's a couple things that I recommend. I always recommend that if you're having difficult conversations with your medical team, it can be really helpful to bring somebody with you if you have somebody to go with you. I think having somebody to sit in your corner can be very helpful. And if you are trying to express something and the team doesn't seem to be hearing them, sometimes having another voice in the room is helpful. So letting that person who's coming with you know that you are struggling to let your team know that something is happening for you and they are not necessarily taking it as seriously as you would like them to. It can be helpful for that other person to help advocate with you, not necessarily for you, but with you, as a team. So sometimes that's a helpful strategy.

(56:37): I think the other thing is to just, as polite as possible, we try always, because we want to maintain those relationships, just to be honest is to... You can use the term, "I feel like I've been trying to let you know that I'm struggling with X and I'm not sure how that is being addressed, or I don't feel that that is being addressed. So I'm very concerned about this. And I would like some help in figuring out what's going on with my fatigue or with my pain." If you don't feel like your primary person is as responsive, sometimes that's also a good time to rope in if you have an NP that you have a good relationship with, some other part of the medical team, another doctor that you see. It can also be helpful sometimes to get another opinion, if you really feel like you're getting stuck and things are getting missed. It's always okay to ask for other opinions.

(57:39): Most patients who go through this process at some point will see another provider to get some help, whether that's because they need to see somebody else with a hematology experience or because they have to see a specialist in a particular area. So it's always okay to get another opinion if you feel like you need one.

(58:01): [Mary-Clare Bietila] Absolutely. I think that's really good advice. From my own experience, I really utilized my nurses when I was inpatient as well as outpatient to strategize sometimes because they knew the landscape and how providers worked better than I did. I struggled with people getting back to me with emails and things like that. And I realized, nope, you have to go through their PA, and every doctor's office seems to be completely different.

(58:33): [Stephanie Davidson] Agree. 100%.

(58:34): [Mary-Clare Bietila] So yeah, learning to navigate systems is hard. It is. It is. But people can do it. You can advocate for yourself folks. I know you can.

(58:42): [Stephanie Davidson] 100%.

(58:42): [Mary-Clare Bietila]  Closing. All right. So on behalf of BMT InfoNet and our partners, I'd like to thank Dr. Davidson for this really helpful presentation and just great answers to our questions. And I'd like to thank the audience. You guys just... wonderful questions today. Thank you.