Evan Holm, LMSW, SWCM - phaware® interview 580

Why a Social Worker Might Be the Most Important Person on a PH Care Team

When pulmonary hypertension finally gets a name, fear rushes in fast. Social Worker, Evan Holm, is often the first person patients lean on after their right heart catheterization at University of New Mexico Hospital. As a support group leader for PAH, he is passionate about providing emotional and educational support to patients and their families while assisting them in navigating the healthcare system. His work proves that access, advocacy, and compassion can be just as lifesaving as medication.

I'm Evan Holm. I'm the social worker for the University of New Mexico Hospital, Pulmonary Hypertension Clinic. I'm also the living donor social worker for our transplant department here. I really kind of fell into this role. I was actually working inpatient and there was some hospital restructure and the position that was open was the pulmonary hypertension and the transplant clinic. So, I started there and haven't looked back since. It's been over five years since I moved into this role and it's been fantastic working with the doctors I work with, working with all the patients. I get to do a lot of fun stuff with everyone, so it's really great.

As a social worker, I really like to think of myself more as a navigator. I help our patients navigate our healthcare system, help them with their insurance, help them get the medications that they need. A lot of these medications have super high co-pays, so I help them navigate the assistance funds and get them signed up for funding for their medications. My patients call me with all kinds of questions. They just know that I'm here and can help them get to the doctors, get to our advanced practice providers to help answer their more clinical questions. I'm here to help my patients with whatever they need.

I got involved in the support group. Again, I fell into it. The previous social worker had run our support group, so I just kind of took that over when I took over this position. She had a really strong support group going, so I've just continued that on and kept our patients coming in. Our meeting's once a month at one of our outpatient clinics, so it's really nice that UNM has that space for our patients to meet.

As outpatient, I get to spend a lot more time with my patients than I did inpatient. I've known my patients since I've been here, for five years. I've really got to know them well and build that relationship with them, really have that good long-term relationship. It's been really nice being able to see them evolve and connect with their diagnosis and really come into their own with their pulmonary hypertension.

We have a really unique approach when we first see our patients, when they first get diagnosed. I actually go to the catheterization lab with the providers, with our nurses. I watch a lot of the caths actually. Then, we meet with the patient after the cath. So it'll be me, the providers, our advanced practice providers, our nurse case managers. Then, I really just talk the patient through their diagnosis, through their hemodynamics. That causes a lot of stress, a lot of anxiety for patients, because they're like, "Oh gosh, what's next? I have this diagnosis. I finally have a name to whatever is going on with me." A lot of our patients, it could be 2, 3, 5 years that they've had PAH and gone undiagnosed since it's such a rare disease. So, really just talking them through what does it mean to have pulmonary hypertension, what are the next steps, what our roles are, and helping them either get their medications. Or if they have CTEPH, I help them get out to a center that does the surgeries, really walking them through what that means.

I give everybody a new patient packet that explains what pulmonary hypertension is, what to look out for, what to do if they gain two pounds in a night, five pounds over a week. Give us a call, we're really here to help the patient out. I've had patients break down after the right heart catheterization. I do that crisis intervention really after the cath, just to walk them through those first steps after they get their diagnosis.

During our support group, it's really great, because we do talk about the diagnosis, what does it mean to the person. But it's also the patients providing support to each other and them talking about their diagnosis and what it means to them and their understanding of the disease. It is really good to see what the patient understands about pulmonary hypertension. That way, I can help dispel anything that's incorrect. There was that study that says (patients) are not supposed to live after five years. So, I talk a lot about that. That's a study if you didn't get on any medications, that's what it was. It's really dispelling all of those misconceptions about pulmonary hypertension. It is really great to get each of my patients to support each other and they just talk about what they're going through.

Some of the wrong assumptions I see from my patients is that they can't do anything. They have this diagnosis, they're stuck being at home, not being able to do what they used to do, things like that. I and the support group really encourage people to just get out and live their life and what they want to do. It might look a little different. They might not be able to do as much as they once used to. That's really that grieving process that I and the support group help our patients walk through. There's a ton of new patients that come in. They get this diagnosis and they'll come into the group. I have patients that have been diagnosed… I think our longest was diagnosed in '97, so I'm not great at math since I'm a social worker, but 27 years, however long that is. So really just seeing these patients that had this diagnosis for a long time really brings hope to these patients that are newly diagnosed.

It has changed me a lot working with these patients. Just seeing what they go through makes me see I am nowhere near as strong as some of my patients. They've been doing this for 10, 15, 20 years, dealing with these heavy dose medications that cause all these side effects. They're strong, they get up, they do what they need to do, they live their lives. It's really great seeing those patients that are strong and do what they need to do.

The one piece of advice that I give someone who is just newly diagnosed with pulmonary hypertension, or really anyone with pulmonary hypertension, is to look into a support group and know that you're not alone in what you're going through. Get out there and meet people, because it's such a rare disease. I tell my patients, you won't meet someone else with pulmonary hypertension in the wild. Running into someone at the store with PAH, it's just not going to happen. Really connecting with people and seeing that you're not alone in what you're going through is really powerful.

Being in New Mexico, we have such a diverse population. We have a huge Native American population here in New Mexico, so a lot of scleroderma in that population. There's no one face to pulmonary hypertension, it's very diverse. Even the populations I have here in New Mexico are very different than anywhere else that I've seen. I just want to mention that we're special here in New Mexico.

I'm Evan Holm and I'm aware that my patients are rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [e-mail] Like, Subscribe and Follow us: www.phawarepodcast.com. @UNMHSC