Q&A: Mental Health Matters
Q&A: Mental Health Matters

CareDx hosted the “Ask the Experts: Mental Health Matters” webinar in partnership with the National Kidney Foundation serving Northern California and the Pacific Northwest on Wednesday, May 18. More than 600 members of the transplant community, comprised of transplant recipients, caregivers, and clinicians, joined the live virtual discussion to learn more about the role mental health plays in the pre- and post-transplant journey.

Below is a summary of the questions posed during the session, as well as answers from both the patients’ and clinicians’ perspectives.

Webinar Panelists:

  • Dinushika Mohittige, MD, MHP, Assistant Professor of Medicine, Division of Nephrology, Duke University Medical Center
  • Dori Muench, LCSW, post abdominal transplant social worker, Wake Forest Baptist Abdominal Organ Transplant Program
  • Perry Hall, dialysis patient
  • Phelicia Price, kidney transplant recipient

Question #1

It’s common to experience a number of intense emotions after being diagnosed with a chronic illness and navigating the transplant journey—including anxiety and depression. How can we better prepare patients for the emotional toll?

Answer (Dori Muench)
“I look at an emotional response to anything along the continuation of the grief cycle. When we think of the grief cycle, we often think of actually losing a person or a friend or an animal. But the brief the grief cycle can really apply to the loss of anything that we have—the loss of kidney function and the loss of a normal routine that we were comfortable with. It’s important to realize that this is not linear, this does not go 1-2-3-4-5, but it can go back and forth, and so you can be in shock and denial over a diagnosis and feel like you can accept it, and then get another piece of it and then feel like you’re in denial and get back to acceptance. I think that we can prepare patients and ourselves better by acknowledging this as a reality in our life. Just as common as high blood pressure or diabetes may be in kidney disease, an emotional reaction to kidney disease is really just as important and needs to be addressed in the same way. Often, we are uncomfortable asking for help, and we are uncomfortable acknowledging that this may be something in fear and looking like we can’t handle bad news or we’re not going to be eligible for a resource that might be available but being candid and open with yourself and your providers and your care team can really open a lot of doors for success and recovery in a much more comfortable way.”

Question #2

These emotions can be a side effect of medications, which may impact a patient’s adherence to their treatment plan. What symptoms should patients and loved ones be on the lookout for to help intervene?

Answer (Dr. Mohittige)
“This is a tough question and it’s such an important one, because the truth is that all of our bodies are so different, so the side effects of the medications that we take to treat the progression of kidney disease or care for a transplant may be really different depending on who you are. I think the biggest thing I try to remind everybody that I’m caring for is that nobody knows your body better than you do. So, if you notice something different about how you feel, whether it is headaches, nausea, diarrhea, or really something like loss of interest in activities—that’s really important to your provider, we need to know about those things as they arise. Being honest with yourself about what those are and then feeling really empowered to bring that to your provider and your team is essential.”

Question #3

Studies have shown that an estimated 50% of transplant patients experience at least one episode of substantial anxiety or depression within the first two years post-transplantation. As patients, it can be very overwhelming to manage. What were some of the triggers that would cause you to have feelings of anxiety and depression and how did you recognize them?

Answer #1 (Perry Hall)
“Some of my triggers in my transplant … the first go-round were basically survivor’s guilt. I also had hair loss the first six months, substantial hair loss and bald spots, and so that was a trigger. I basically had to continually remind myself that things could be worse—I could be back on dialysis, which also triggered those emotions of fearing [my transplant] would fail.

Answer #2 (Phelicia Price)
“Hair loss was big for me, as well as weight fluctuations and the hand tremors. When you look up a medication to see what the side effects are—I got all of them. It wasn’t hard for me to recognize because they were all there, but what stressed me out the most was feeling like I couldn’t talk about them with anyone. There was a feeling of you just had this life-saving, life- changing transplant from a living donor, do I really even have the right to complain about my hair or my skin or any of that? I would say to myself, would you rather be in a coffin with perfect skin and hair or out here with bumps and bald spots?”

Question #4

Where can patients turn for support if they’re struggling with mental health issues? Are there services and resources that their care team or transplant center can help provide?

Answer (Dori Muench)
“Patients should talk to their providers about what resources may be available. There are a plethora of virtual counseling resources that patients can now access if they don’t feel comfortable going into the community. Mental health treatment has become more accessible and closer to your home.

There are many different symptoms of depression … fatigue, lack of interest in doing things, increased or decreased appetite, crying all the time, and feeling worthless. Those symptoms can be treated before they become something where you’re unable to leave the bed and you’re unable to access any other health care. We know that people that have untreated emotional health concerns can have poor health outcomes. So, if you’re concerned about the stigma related to treating mental health, know that by treating your mental health issues you’re also addressing your physical health.”

Question #5

Often times our physical health impacts our mental health. What can patients do to help reframe the way we process those outcomes?

Answer (Dr. Mohittige)
“Let me share an example using problem-solving and reframing. Let’s say blood pressure is high and that you and your healthcare team have identified that it may have been a recent change in diet that contributed to the increase issue. A dysfunctional or less helpful thought you may have in response to this is, ‘I failed, I didn’t do this right; I didn’t eat right, I’ll never be able to get this diet right.’ That thought could actually lead you to give up instead of recognizing that you can regain and exercise control in that thought and your response.

A more functional approach that incorporates a different kind of problem-solving is saying you know your diet has maybe been less than ideal and instead of thinking, this is a failure, you think, okay, this is a setback. You recognize that keeping your diet lower in salt, for example, may be hard but it’s not impossible. You remember the times that you’ve done it before, and you have seen it work. And you have a kidney care team that can also be there to help you when you need it, so instead of giving up, you kind of increase your effort to change that diet, you get the help to do so because, again, this is a team sport and you take a different approach by reframing.”

Question #6

As patients, we have to find ways to cope. What strategies do you use when you start to feel overwhelmed? What advice would you give to patients on to talk to their loved ones about what they’re going through?

Answer #1 (Phelicia Price)
“I’m so thankful that I have a doctor who recommends more than just medication to me, and one of the things that he talked to me about was forest bathing, which is essentially saying get outside, so that’s one of the first things I do. I know it sounds cliché, but getting in the sun, if you can take your shoes off and let your feet just sink into the earth, even something seemingly as simple as that just lets you feel a bit more grounded and connected.”

“Regarding advice to give to patients on how to talk to their loved ones, I would just say pick and choose, I mean the same way that you know your friends, you know who to call when you’re crying, you know who to call when you want to go shopping, you know who to call when you just want somebody to agree with you and be mad. So, it’s the same thing with your family—know who to call to talk to that’s going to be understanding. If you’re like me, I don’t want a whole bunch of questions so don’t call the auntie that’s going to ask you a million questions about everything—just share what you need—or share how they can help you.”

Question #7

The COVID pandemic added an extra challenge for patients to manage. What helped you through the last two years, and how are you continuing to navigate this new normal?

Answer (Phelicia Price)
“I allow myself to feel, I just don’t allow myself to drown in my feelings. As a yoga instructor, I think I talked a lot about acceptance, you know when people come to my class and they want to do a split instantly and I’m like let’s accept where our hamstrings are right now, today, so it’s kind of the similar thing. It’s accepting that we’re in a pandemic, accepting that I’m immunocompromised, and accepting that even as I’m scrolling through Instagram, I can’t do all the things my friends are doing and what that means for me. It’s just figuring out how to do that in your new normal and what that looks like and having supportive people, having friends who, in my case have been vaccinated to come over and play scrabble, and things like that so it’s just figuring it out that way.”

Question #8

What advice do you have for patients on how to stay positive when their health journey seems impossible?

Answer #1 (Dr. Mohittige)
“I think the most humbling part of hearing all these stories is just remembering what an honor it is to be a physician. Our job as providers is to help make sure that patients understand their decisions; we are a vessel to listen and to be there to support that every decision made is truly informed and shared and congruent with our patients’ values.”

Answer #2 (Perry Hall)
“I would say that it’s important to stay active and lean into your friends and family. I have six children so that keeps me pretty busy. Anytime I am feeling down, I pretty much focus all my attention on to their activities and what they’re doing—it doesn’t leave me much time to feel sad for myself. I remind myself things could be worse and that you should be happy for where you’re at. I do give myself a little bit of time to have my meltdowns but then I don’t stay there.”

The entire recording of the “Ask an Expert: Mental Health Matters” webinar can be found online here.