Khushboo Goel, MD phaware® interview 563

The Hidden Daily Battles of Pulmonary Hypertension Patients

Behind the clinical charts and heart catheterizations lies a world of emotional, financial, and physical challenges that PH patients face every day. Dr. Khushboo Goel opens up about what she’s learned from patients in support groups—and how it’s reshaping her approach to care.

My name is Dr. Khushboo Goel. I am a pulmonary hypertension specialist here at Cedars-Sinai. I'm part of the faculty for the Division of Pulmonary and Critical Care Medicine.

I came to Cedars in route, multiple states in terms of my medical training. So I'm from California, from the Central Coast area, but I was at the University of Iowa for med school, the University of Arizona for residency and the University of Colorado for fellowship before I came to LA a couple of years ago to join Cedars. I've almost always been pretty clear that I wanted to do pulmonary hypertension, at least through from early on in fellowship. I think my first exposure to PH was as a resident at the end of my residency when I did an elective with one of the pulmonary hypertension specialists. I remember just finding it very interesting, right? Heart catheterization seemed really fun. Then, I think as a fellow getting involved with that disease, I think in a much more meaningful way, working with the patients. It's a very unique field in that we've made a lot of progress in the last 20 years in a subset of pulmonary hypertension. But the fact that there's still so much more that we still have to learn about, there's still gaps in care. There's a lot of questions that need to be answered. I think it's a very humbling disease. I think that's what I really found fascinating about PH.

I think my personal experience with PH has really evolved. So as a trainee, as a resident or a fellow, we're thinking about the disease very clinically from a scholarly perspective. This is the disease, this is how it happens, this is how we treat it. Then I think as I evolved into the end of my fellowship and certainly becoming an attending, I realized really the practical aspects of PH and really how does it affect my patient's life on a day-to-day basis. What are the challenges that they face personally, emotionally, financially, logistically? So I knew that when I became an attending, I really wanted to make sure that patient outreach efforts and doing something at the grassroots and local level is really important to me, to have that as a part of my career in PH.

When I joined Cedars, what I had learned was that we used to have a PH support group, but during COVID, as many things did, it went into hiatus. So one of my passion projects was to kind of come in and revitalize this support group. It was actually a very different perspective for me, because as a fellow or as a resident, I had heard about patient support groups, but I had never attended one. I didn't really know what it was like and what it involved. So it's been a great learning experience for me to actually start up a patient support group and become a support group leader.

Actually the majority of support groups, at least the ones that I'm aware of, are led and spearheaded by patients themselves, or nurses, clinical coordinators for a particular PH center or institution. I was less familiar or aware of physicians being support group leaders. So it was a unique experience and a perspective to put my hat in the ring as a PH support group leader as a physician. But also a great opportunity, because I was mentored by other support group leaders in LA who are patients and nurses themselves. So it was a great cross collaboration and learning experience.

It came together not the fastest, it required a bit of work, but the Pulmonary Hypertension Association or PHA is fabulous. Honestly, I think we're so lucky to have an association like this. So it was pretty easy once I learned that PHA really supports support groups and support group leaders. I applied to become a support group leader through PHA. They  got me connected with a mentorship team. We set up some Zoom meetings, and I really got to learn from them. What are support groups? How do you run them in-person versus virtual? What are the logistics for finding locations and food? And after a few meetings with them, I was able to generate some ideas. I really wanted to utilize the resources that I have at Cedars-Sinai and use those resources to really make this meeting available to everyone.

So what I make very clear with whenever I'm advertising these meetings is that these are not only for PH patients, but it's really for patients, their friends, their families, anyone interested in PH, and anyone who has a vested interest basically in pulmonary hypertension. I've mostly been doing in-person meetings. We'll have them physically on the Cedars-Sinai campus. So far, I've mainly been doing them on Saturdays or the weekends, essentially, trying to figure out good times for commute and people's work schedules. I've scattered in some virtual meetings here and there as well. So kind of trying out different things, seeing what works for people. I like to kind of poll the group at the end as well to see what topics they're interested in.

The first meeting that we had was about understanding PH facts versus fiction. So basically, as a physician, I led the meeting, but I also was the speaker. I thought it was a good forum to just talk about basics of PH. What is it? How do we diagnose it? What are some basic treatment approaches? And to bring up questions or things that people had heard about PH when they were first diagnosed with it. For example, I'm going to die in one year, is a common thing that you hear, because if you Google PH, that's one of the first things that you'll see. So we were able to kind of tackle things that were more myths than reality.

Since then, we've had meetings on a quarterly basis. So other topics that we've done are exercise and pulmonary rehab in PH. Another topic that was brought up, because a lot of people are afraid are not sure if it's safe to be active if they have this disease. For that meeting, again, it was in-person. We invited Dr. Sarah Gondahari, who is the director of our pulmonary rehab program here at Cedars. She gave a wonderful talk about that. We had a very unique talk, this was virtual about regenerative medicine clinical trials in PH. We had Dr. Michael Lewis, who's also one of our PH specialists, and Dr. Pablo Avalos, who are basically leading trials about novel ways to tackle PH. So that was a virtual meeting, and we really were able to get people to join in from all over.

Most recently, I thought this was a very fun session, was we had another in-person meeting about basically life with intravenous or subcutaneous prostacyclin therapy. So people who are on Remodulin, for example. It was a great way for people to share experiences with each other. Then I invited a nurse from CVS specialty pharmacy to come with all the pumps and the gadgets, and people got to do hands-on sessions, practice, troubleshoot, see what other people's pumps looked like.

Technically as a physician, I'm new to this area. I don't know, maybe, the nuances here. This is a fabulous way for me to not only try to provide a resource to patients regardless of whose patients they are. I don't care if they're Cedars patients. In fact, actually the interesting part is the majority of the patients at our meetings are not from Cedars. They're from other places. This is, I think, one way that I could do that was to become a support group leader. I actually find it really humbling to be at these meetings, because it's meant to be a very safe space for patients, families, friends, to be honest about their experience with this disease.

I think in the confines of clinic appointments and in-patient visits in the hospital, as much as we try to really delve into that, we may not hear that as physicians. We may not really understand what that means. So I think as an example, during our most recent meeting about intravenous and subcutaneous therapy, what every single person in that room said about their experience was: no one told them or prepared them for how painful subcutaneous therapy actually is, how painful the site changes are. The second thing that was shared pretty consistently was how difficult it can be for patients to try to get medications or some sort of comfort relief agents to help them with the pain at the subcutaneous sites.

For example, in the two weeks after a site change, which is the most painful for people, because of the loopholes of some people may not be comfortable providing certain medications, then you have to go to your primary care doctor. But then your primary care doctor doesn't know about PH. So that the patient had to explain all about PH to their primary care doctor. One person actually was in tears about her experience. That was extremely humbling for me and eye-opening. So for me to be respectful of their emotions and be able to give them that space, but at the same time, take that feedback and hopefully provide it to my colleagues, and hopefully actually progress that issue. If that's a barrier or if that's an issue we can actually make, maybe make improvements on it. So I found it, like I said, very humbling, very eye-opening, and extremely rewarding.

The very first meeting that we had, which was about understanding PH facts versus fiction, I started the meeting off by asking everyone around in the room to go around, introduce themselves and their connection to PH. If they were a PH patient, I asked them to share how long they'd had the diagnosis for, how long they had lived with the disease for. It was amazing to see people's reactions when they heard other people say, "I've had PH for 30 years or 20 years." It would inspire so much immediate hope in their eyes. You could just see it from their expressions that they too can live even with this disease. Since then, I've started every meeting that way, because I just found that to be so inspiring, both as a physician and just honestly as a person.

I think the lived experience of someone with PH is what I am personally gaining as being a PH support group leader. The lived experience includes the struggle that they had to go through to get diagnosed in the first place, stories about how their doctors thought they were simply obese, and that's why they were short of breath. And how much advocating it took on their behalf to finally get the workup done to end up with a diagnosis of PH. The challenges of being on all these different medications and what those side effects actually mean in terms of their day-to-day lives.

Also the perspective of what toll PH takes on their family and friends, right? Because people at the support group meeting are not just patients. They're friends and there's parents and there's caregivers. I think all that perspective is very valuable. I think that we're all trying to be as cognizant of that anyways as physicians or as nurses or as anyone in the healthcare industry. I think it's just solidified it more for me that when I am in clinic or I'm on the inpatient side, I hope that I am at least more aware of things that they might be struggling with or things I need to be more considerate of when I'm taking care of them.

One of the reasons I wanted to have a support group meeting about the regenerative medicine trials in PH was to first and foremost spread awareness to patients and their friends and families that there are many clinical trials happening in PH. I wanted them to be aware of that so that they could ask their doctors whenever they're seen about getting involved in clinical trials. I also wanted to make sure there was a good opportunity for patients to learn from each other, from people who had been already participating in a lot of clinical trials versus those who had never participated in a clinical trial, and have a good opportunity to learn about maybe some barriers or hesitation that people might have before enrolling in trials.

Then also, my other goal was, again, to have a conversation and a discussion about what people's experiences have been in participating in clinical trials. There are people who had never participated in a clinical trial. There's others who are clinical trial veterans. They've been part of every trial that you can think of and continue to participate and then really benefit from that experience. I got to hear real unfiltered reactions. They'd kind of tell you, "Oh yeah, my experience on this trial was great." Or, "My experience with this other clinical trial was a bit of a pain, because the follow-up requirement was X, Y, Z, or the protocol was challenging, or logistically hard to get involved with. Or I didn't get feedback, or I didn't hear from someone after a certain time." So again, I think really that practical experience of what it means to be involved in a clinical trial, that's something that we were able to talk about and share. Very different from just us reading out a consent form and saying, "Well, that's that. My job is done in terms of research."

My just overall message to patients with PH or anyone connected to PH is, I just want to put a plug out for support groups. They are really wonderful, and they're meant to be a community for you to be involved with so that you know that you're not alone and that you have people who are there to be with you and to help you through that process. I think that's invaluable. Yes, you need your medications. Yes, you need your diuretics and all of that. But I think the community that a support group provides is just as important.

I would encourage people to use the PHA website as a starting point to look for support groups, because there's a wonderful section under the support group tab where they have a calendar, and the calendar lists every single support group across the country, in-person or virtual. You can just search by where you live and what topics that you find interesting. Even if a support group is either located in a certain area or has the label or the name of a certain institution or hospital, just remember that it's meant to be for everyone and anyone. So never hesitate to reach out and advocate for yourself. And like I said, just become a member of this community. I actually just received an email from someone reaching out saying, "Hey, I'm a patient. I was just diagnosed, newly diagnosed with PH. I don't have a support group near me, but I found this name on the PHA website, so I'd like to reach out." So hopefully, this can be a great network and a resource for people.

My name is Dr. Khushboo Goel, and I'm aware that my patients are rare.

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