The Kidney Collective: "Honor Your Feelings"

Dr. Molly Kierein: As I was trying to find support, I was really very shocked to find that there was very little out there. And I made a pact with myself. I thought, man, if someone gives me an organ, I want to completely change my practice and I want to foster conversations about mental health and support for kidney patients because we really do need it.

LaVarne Burton: Hello, I'm LaVarne Burton.

Tamara Ruggiero: I'm Tamara Ruggiero.

Mike Spigler: And I'm Mike Spigler.

LaVarne Burton: Welcome to season three of the American Kidney Fund's podcast, The Kidney Collective, which gives an intimate voice to the many facets of living with kidney disease.

Tamara Ruggiero: This season, we're exploring the mental health aspects of living with kidney disease.

Mike Spigler: Over the next few months, we'll be talking with members of the kidney community about how each part of the kidney disease journey, from diagnosis to transplant, can impact mental health.

LaVarne Burton: Join us for these candid conversations, which offer both information and inspiration. Dr. Kierein is a licensed clinical psychologist in California and the founder of the Kidney Psychologist, which provides individual and group therapy for kidney patients living in California. Dr. Kierein is also a kidney patient herself, and she's currently living with a kidney transplant. Welcome, Dr. Kierein.

Dr. Molly Kierein: Thank you. It's a pleasure to be here.

LaVarne Burton: You know, I'm really interested in this conversation. Too often we don't talk about mental health, and we certainly don't talk about mental health with regard to kidney disease. Tell me about yourself. How did you decide to become a psychologist? Was there some particular experience that you had that made you want to be a psychologist?

Dr. Molly Kierein: You know, I think working in any kind of helping profession tends to be a calling for people. And I had a wonderful experience in my 20s with a psychologist, actually. And he changed my life. And that was just so inspiring that I thought I would love to be able to provide that for people because life is hard, it can be hard, not all the time, and we need support sometimes. So that that that was the original inspiration.

LaVarne Burton: What was your practice like pre- your diagnosis with kidney failure? How did you approach it? Who are your patients?

Dr. Molly Kierein: I'm a part of a group called the Bay Area CBT Center. And I use a lot of cognitive behavioral therapies. I'm helping people observe the patterns that they have that maybe keep them stuck in certain places. So we're looking at our thoughts and our feelings and how those are interacting in the loops that we sort of find ourselves in. I also think in general, when you are in therapy, if you're struggling with any kind of emotional challenges, that there's something about having that special hour to just really be present and honor your feelings and be there with them. And that's because I think if we don't do that, we will go out into the world, go to our jobs, be with our friends. And some of those emotions might come up in ways that that we don't necessarily want.

LaVarne Burton: And generally, who are your patients pre-kidney uh disease diagnosis?

Dr. Molly Kierein: These are folks who work in the tech industry, perfectionistic, high-functioning, hard-on-themselves people. Those are sort of the kinds of clients that will come to us.

LaVarne Burton: And how did being diagnosed with kidney failure and then receiving a transplant, how did that change the way that you approached your practice?

Dr. Molly Kierein: It was a game changer for me. When I was looking for a donor, kidney donor, I was feeling all sorts of emotions. So things like despair, anger, confusion, loneliness, just a lot. And I was seeking, I was trying to find mental health, a group therapy that works with kidney patients. I wasn't in a dialysis center, so I didn't have access to a social worker. I didn't really have access to many resources at the time. So as I was trying to find support, I was really very shocked to find that there was very little out there. And I made a pact with myself. I thought, man, if someone gives me an organ, I want to completely change my practice and I want to use my degree to help foster conversations about mental health and support for kidney patients because we really do need it.

LaVarne Burton: And and let's talk about the diagnosis itself. That must really have been a shocker. 2019, you're diagnosed. And how did you first find out about the disease?

Dr. Molly Kierein: I, my sisters and I, we all knew that we had a rare genetic condition. And so kidneys were always a conversation in our household. But it was sort of easy to be in denial because generally, if you're a female with this condition that I have, you can live a full life. And it's very rare for your kidneys to actually fail and get to end stage before the age of 40 or even 50 or even 60. So when my kidneys started failing and they failed pretty rapidly, it was a shock to myself and also my family, because we had sort of been living in this blissful sort of denial to some extent. Um, and I think it was hard on my sisters too, my older sisters who live with the same condition to say, oh my gosh, whoa, you know, this is not what we were thinking.

LaVarne Burton: Would you mind sharing a little bit about how were you diagnosed? Were there symptoms or what happened?

Dr. Molly Kierein: The condition that that we have all through my mother's line is called Alport syndrome. It's X-linked Alport syndrome. And that is a syndrome where there are mutations in the genes that provide instruction to the type 4 collagen that is really important for the structure of the kidneys, the inner ear, and the eyes. So folks with this type of condition will show symptoms like protein, excessive protein in blood in their urine, and generally from a very young age, and they can live their whole life with those symptoms. And their kid, if you're a female and their kidneys may not fail, it really just depends, and it's sort of different for everybody.

LaVarne Burton: You talked about being shocked, maybe some anger when you initially found out that you were uh in or approaching kidney failure. That's a feeling that a lot of patients have. So, in that sense, your reaction was not all that unusual, but you were a clinician, you were in charge of things, you helped people figure out how to how to do this. How do you think this was different for you, given your background?

Dr. Molly Kierein: You know, I really try and practice what I preach. And one of the things I say is honor how you feel, be present. If you need to take a break from those feelings, that's okay, but give them attention, express, whether it's to a friend, a rabbi, a pastor, be compassionate, I think, with yourself. Self-compassion is something people, you know, say, well, how do I do that? What is, you know, what does that even look like? And I think that looks like being sort of resisting being hard on ourselves in those times when we are maybe feeling overwhelmed with a lot of feelings at once. And so I think having that knowledge and having practiced that already throughout my life helped, definitely. It definitely helped, yes.

LaVarne Burton: That's great. And then you went on a journey to find a transplant donor. Tell us about that.

Dr. Molly Kierein: That is one of the brightest memories I have. I just think about my donor. I don't know who she is. I only know her first name. She's completely anonymous. And in fact, as we're recording today, this is the five-year anniversary of her surgery, where she donated in my name to someone else. And then six weeks later, I was able to get a kidney myself. But really, because no one in my family was eligible to donate, because we all have the same genetic vulnerability, my family, and I was very lucky. They we advertised. I think we put up actual signs in our yards that said, you know, SaveMolly'sLife.com. You know, we started a little web page just to make it easier for people if they wanted to pursue that. So it was a scary time, because, you know, I think the hardest thing we do as human beings is live with the unknown and the unpredictable. So that was a challenge, but I had a lot of support, so that made it more tolerable. Yeah.

LaVarne Burton: And we don't know that donor, we hope she's listening or will listen to this podcast, and we thank her. We thank the hundreds and thousands of people who give that remarkable gift of life to someone else by donating a kidney. So we thank you so much for giving Molly this kidney and for giving us the opportunity to talk about it today for other people who may be in that same position.

Dr. Molly Kierein: There's a quote that I think about when I think about my donor: be not inhospitable to strangers lest they be angels in disguise. And so that's sort of what I, you know, keep in my mind.

LaVarne Burton: It's absolutely so true. And it's a wonderful thing to keep in mind. And let's talk about mental health. And kidney disease. You've been doing this now for a while, you're transitioning your practice. Are people surprised when you tell them that you're moving toward being exclusively or almost exclusively a renal psychologist? So they ask you, what is that?

Dr. Molly Kierein: Not really. They're not really surprised. My family's just like, oh, this is exciting, this is good, you know, they're just sort of cheering me on, you know, and saying, yes. Um, but in general, this whole concept of a renal psychologist, it's in the literature. In fact, there's a name for us. There are two different names, nephro-psychologist or psycho-nephrologist. So apparently we're out there, but I don't know of any other nephro-psychologists or renal therapists. I know they exist though. It is a new area that I hope in 10 years' time the American Psychological Association will invest and give renal patients attention and that it can be a specialty that can grow.

LaVarne Burton: What are some of the common health concerns that you find in your renal patients?

Dr. Molly Kierein: Yes, it really does depend on their stage. For those who are on pre-dialysis, pre-renal replacement therapy, I sort of keep in mind three main burdens, psychological burdens that they carry. So one is the symptom burden. So toward end stage, but right in that pocket of time before you are on a renal replacement therapy, there's a lot you need to do. And one burden is you're sort of finally, maybe for the first time, feeling the actual physiological symptoms of your illness. So things like shortness of breath, maybe some cognitive challenges, just the fatigue. So that can be a shock for people. They can sort of live throughout their renal failure journey and not necessarily feel much. So, so during this time, there's this sort of onslaught of symptoms that that you're feeling. And then I also think that there, and so while that's happening, you can't be in denial. You're going through the stages of grief, I think. There's sadness, there's anger, there's bargaining, and hopefully sort of moving towards acceptance. But the other burdens are huge. I mean, one is you're an education burden. So you're at that point where you learn about your future options. And that sort of brings us to our decision burden. The decision burden is do I want to go on dialysis? Which kind of dialysis? Do I want to pursue a transplant? There are just a lot of things to learn about what that even entails. And then there's a lot of self-reflection, I think, that's important to do during that time to live aligned with your values and figure out what feels right. So those are some of the burdens, sort of pre-renal replacement therapy. And I could spend sort of just an hour talking about that. I mean, I think each stage, there's a lot more to it, but then we have our folks on dialysis. And the first year getting on dialysis is generally there's a huge adjustment burden, right? And that can be the most challenging year. And in fact, that's sort of what the research indicates, not all the time, of course, but that can be hard. But what you're also dealing with is a lot of changes, loss of independence, or sort of feelings of loss of agency, loss of feeling a loss of power that can that can happen. The burden of the frequency of going in to stay alive can cause people to withdraw and disconnect. I there is this sort of the constant accumulation of the uremic toxins, and that can lead to what we said of neuroinflammation, where it puts a lot of pressure on the brain. So people are starting to experience some cognitive changes. And some, you know, people talk about difficulty with thinking. And it's usually mild, but it's something that folks experience um during dialysis. It's hard on the body. So I don't want to be a Debbie Downer here, but I just want to be honest and say that, you know, I talk to people and I'm aware of these intimate situations. And these are sort of some of the patterns that I see come up for folks on dialysis. And I think the most important thing to remember is that you do have power, you do have agency. And in fact, reminding yourself and having daily clarity about why I'm doing this, why am I gonna, you know, it's a full-time job sometimes to keep ourselves alive. And so I think it's really important, especially when things are high, things get low, they're sort of up and down, to be really clear with yourself. I'm doing this because of my children. I'm doing this because I love life. But staying close to that really, really helps people choose every day to keep taking care of themselves. And there's a there's a lot that people can do and a lot of agency that they do have, even though it sometimes feels like they don't.

LaVarne Burton: You mentioned um the challenge of dialysis sometimes being a full-time job, which means that many people are no longer able to work. How does that add to the mental stress?

Dr. Molly Kierein: There can be a crisis in identity or just a change in role. People's careers give them um, you know, a strong sense of who they are and their identity. And so when that sort of goes away, also a strong sense of independence and agency. And so, yeah, when that's decreased or isn't in the picture, you sort of go from independence to feeling dependent all of a sudden, right? On the people around you. And that in and of itself is a big transition for folks.

LaVarne Burton: And after you've had the transplant, which is your own personal experience, what are some of the issues that people deal with when they're at that stage in the journey?

Dr. Molly Kierein: The three things, the themes that come up. One is having reasonable expectations about transplants. I know in my family it was like, oh, just get a transplant and you'll just, you know, go right back to get your old body back again, and everything will go back to how it was. Right. And that's a wonderful thought. And actually for some people, they do experience that. So I'm not saying that's not a possibility, but I think one challenge is because of the immunosuppression drugs can, and not for everybody, but they can have pretty hard side challenging side effects that people then live with. And it and it can change your body. You feel different in your body. So a big sort of psychological challenge is to become comfortable again in your own body and learn about what this new body can do. And so I think it's important to take your time with that. It's, what is it that they said to me? I remember at the hospital when I was coming out of the surgery, they said it's a marathon, not a sprint. So getting comfortable again in your own skin, that's a big thing. And then also just living, living with side effects. One thing, too, that is not spoken about is that folks who have transplants do report, not everyone, but that there are higher instances of fatigue, which makes sense, you know, because your immune system is suppressed. So you just want to just take close care of yourself, right?

LaVarne Burton: And we talk about the mental health effects and how your physical condition affects you mentally, but what about the reverse? How does your mental health, your mental state, and how you handle having the disease impact the disease itself.

Dr. Molly Kierein: Thank you. I think that's the most important question. And this is something that we do in our culture is we bifurcate medical illness and mental health. The research is pretty clear on this. There are measurable medical liabilities when we are ignoring our mental health care. I think if we're not tending to our emotional well-being, that can show up as avoidant health behaviors. It can show up as distressing sort of relationships with our doctors and treatment and compliance. And all of that, of course, can lead to increased hospitalization, comorbidity, and increased risk of mortality. So it's really important to tend to your emotional health so that that is not interfering with how you're showing up for your medical care.

LaVarne Burton: And you focus a lot on group therapy. Why group therapy, in particular for this population? How does it differ when you see patients one-on-one?

Dr. Molly Kierein: You know, I'm still learning about the differences there. I mean, I originally thought group therapy, really just to be able to reach as many patients as possible. But also one of the things that people feel when they have, I really think any medical illness is feelings of loneliness. And then you can have all the support around you in the world, but you feel lonely and alone. And so I think it's that much more important to be with other people who are experiencing something similar and that can relate. And the therapist may not be able to in the same way that the other patients can act therapeutically for you within the group.

LaVarne Burton: Tell me for someone who's just been diagnosed with kidney disease, with kidney failure, what would you recommend to them? What are some of the steps that you recommend that they take with regard to their mental health in dealing with the disease?

Dr. Molly Kierein: I think there's an initial shock people feel. And that's very normal. But you're allowed to feel whatever comes up. Let yourself acknowledge those feelings. It is really what we call protective. There are a lot of protective factors and things people can do to ready themselves should they progress, and so some of those things are strong social support, strong religious or spiritual support. But generally being able to express yourself and and connect with others and share your experience. We want to be compassionate with ourselves. And sometimes we want to do a little avoidance, right? Maybe, maybe you don't want to think about it. And sometimes I think it's important to let yourself not think about it. And that's okay. Also let yourself be present with what's coming up and sort of balance that. That that people generally organically do that on their own. There are we have defenses that will naturally come in, like denial and things like that, that come in and protect us from maybe what we're not ready to feel or acknowledge. So that's okay too, I would say.

LaVarne Burton: How can a social worker help patients? What can patients turn to a social worker to ask them to do with regard to their mental health?

Dr. Molly Kierein: They play more of a holistic role in the care of patients. So sometimes they will act as liaisons between the patients and the medical staff. They will sometimes provide emotional support. That can be one-on-one, that can be in a group setting. They also work to help educate patients about what they're experiencing. They can they can also act as advocates for um navigating insurance and the financial burdens and aspects of kidney health. And that's wonderful. I'm so glad that they are a part of kidney teams. I am so glad that's in place. But it is, I think the limitation in that is it's hard to access a social worker unless you're in a system already, and also because they sort of play such a holistic role, they maybe are spread thin, right? So they can't necessarily play a concentrated role just on emotional support.

LaVarne Burton: What do you think we need to do to provide more resources?

Dr. Molly Kierein: There are lots of peer support. I believe there's the Patient Hope Line where you can get peer-to-peer support and you can call in. There are online forums where you can track your health and you can share stories. You can go to my webpage, you can go to the American Kidney Fund, and all these resources are there. I think what we're doing today, and you guys having a whole season that that focuses on mental health, that's great. More conversation about it is really important. I would love to be able to see more psychologists and mental health providers being trained specifically in renal care and mental health for renal patients and what that entails, and train them on sort of the intersection of the medical aspects of the illness with the mental health. And that can be very complicated, actually.

LaVarne Burton: And you mentioned the associations, the organizations that have information available on their website, and there certainly are a number, and I would perhaps emphasize some of those provided by the American Kidney Fund, for example. We have a Facebook group that's closed just for patients, caregivers, so that they can provide mutual support to each other so that they can talk about different experiences. We have a number of ways that we bring patients together around the country. We have monthly calls, so there are many ways, and other organizations as well have many ways of interacting with patients and of providing a platform so that patients can support each other, and that is so important. It's also important to look after the people who are looking after the patients, the caregivers. Tell me how you see that group and what kinds of resources are available to them, or any of them participating in your in your group sessions.

Dr. Molly Kierein: You know, I have been thinking a lot about that. I do want to start a group for caretakers. Really, there's something in our field of psychology. I think anyone who works in a medical field or in a caring role, nurses, there's something, a phrase called compassion fatigue. And that is definitely something that can that can come up for folks. And so it's that much more important that you take care of yourself and you're keeping your resources strong so that you can be there for others. If you're a loved one and your loved one is going through kidney failure, that's terrifying. They're going through their own journey, the kidney patient, and you're watching it. And, you know, I know that my caretaker, my father, he said he just felt totally powerless. And so I definitely think that you need to honor your journey in what you're experiencing, because it is different from what the kidney patient's experiencing, and we do want to care for that and honor your experience as well as the caretaker.

LaVarne Burton: And you add on to that in some instances, in your instance, for example, where you had a rare genetic cause of your kidney disease, other family members are also dealing with the stress of this is something that's in our family line. If it doesn't happen to me, it may happen to children. So that's an additional stress.

Dr. Molly Kierein: Absolutely, yes. And that has been a topic in my family. Yep.

LaVarne Burton: We've talked about a lot of challenges, but I don't want us to lose sight of the commitment that you have made to do your part in response to these challenges and to help people get the mental health care that they need when they're dealing with kidney disease, as well as other chronic conditions. And I want to thank you for that. You are certainly welcome to join any of our groups. And we want to continue to share information with patients, with caregivers, and others about the mental health implications of dealing with kidney disease. Thank you so much for sharing and thank you for the wonderful work that you're doing. Wish you also the best in terms of your own health. So thank you.

Dr. Molly Kierein: Thank you so much for having me.

Tamara Ruggiero: To find out more about the topics we discussed in this episode, or to access resources to learn more about kidney disease, go to the episode show notes on your podcast listening platform or go to kidneyfund.org/podcast. And if you haven't already, be sure to subscribe or follow The Kidney Collective wherever you listen to podcasts, and leave us a like or review to help us reach more members of the kidney community.

Mike Spigler: You can also follow AKF on all major social media platforms, including Facebook, Instagram, TikTok, BlueSky, LinkedIn, YouTube, Twitter/X, or whatever comes next. Join us next time. And remember that even in the toughest moments, there's hope ahead, and The Kidney Collective and AKF are here for you now.