I'm Aware That I'm Rare: Anna Brown, RN (182)

Anna Brown, RN discusses pulmonary hypertension patients transitioning from pediatrics to adult program as well as the need for comprehensive palliative care that utilizes social workers and psychologists, and mental health providers.  Anna is pediatric nurse practitioner at the Vanderbilt Children’s Hospital.

Transcript:

My name is Anna Brown. I’m a pediatric nurse practitioner at the Vanderbilt Children’s Hospital in Nashville Tennessee. I’ve been working in the Pediatric Pulmonary Hypertension program there for a little over five years, in the program with Dr. Eric Austin, who’s the Director of the program.

I do primarily patient care, whether that’s in-patient consults on our patients in the hospital, or following them in the out-patient setting. Seeing them in clinic for well and sick visits, and helping them in the in-between times over the phone.

Patients can be referred to us from outside centers. It’s not unusual for a lot of our patients to have been dealing with these symptoms for several years. Seeing various providers outside of our clinic, whether they’re living in another state or they were living outside of the Nashville area and seeing a general practitioner or another specialist. So it’s not unusual for patients to go several years with symptoms before anybody has a suggestion that they might have pulmonary hypertension. And then they are at that point referred to our center. And we schedule a diagnostic heart catheterization for them to confirm the diagnosis, and then go from there as far as what our treatment plan is.

It’s tough information to swallow when you are given a diagnosis that your child has a terminal illness. And that it’s a disease that’s going to progress and that at this time we don’t have a cure for it. I think giving them the assurance that we’re going to be with them every step of the way, as we kind of unfold in their story a little bit more and determine what is causing it and what treatment’s going to look like and what changes that’s going to have on their daily life.

I like to try, and include them from a very young age, even if it’s just tell me the name of your medications, or how many pills do you take? Or, what do you tell your friends at school about this pump that you carry? Just to give them a chance to vocalize things in their own words from a young age. As they get older, in their early teens, then it really does become more of a okay, this isn’t just to have conversation, but I need to know that you know how to describe your medications and why you take them. The hope is, by the time they get to age 18 or at some point through college, or after they graduate high school that when they transition to the adult period, it won’t be as much of a shock.

We’ve heard from families that despite our best efforts to prepare, it’s still very different. To go over into a center where the families are, the parents especially, are not equally as part (not that they’re not equally as part of the discussion), but it really is about the patient. And care is directed, and conversation directed, and phone calls are directed towards that patient, and not so much inclusive with the parents as the primary point of contact.

It’s interesting because I think people think of transition as that moment when you go from needing a pediatric center to an adult center. It’s more of a process and a span of time and not a moment. And I think some of those transition pains and growing pains, we actually feel in a pediatric office in attempts to prepare the family. So even though, I think it’s hard if a patient goes to college and whether or not they have a local PH team or a closer PH team that’s working with them, parents are going to call us with concerns. And it’s hard sometimes to really help that dynamic change to where it’s the patient who is calling.

And honestly, I mean, that’s probably true of other areas, not just pulmonary hypertension. If a patient has a toothache, they’re going to call their parents, and their parents are going to be the ones that navigate the system to get them in with the dentist. So it’s a little bit more pronounced because they have more needs I guess, on the end of medications and health care and activity restrictions and what they can do with pulmonary hypertension. But it really is just a stage of life that’s being manifested in many other facets.

Overall, I think it’s harder for the parents than it is for the patient. I think by the time they get to where they can go to college, they know the names of their medications, they know how much to take, what their doses are. They can manage their infusion therapies independently. I mean, if they couldn’t do those things, we wouldn’t let them go off to college. But I think it’s more from the parent’s standpoint, harder to let go a little bit and trust that it’s going to go on OK.

We’re certainly not perfect. And I think just in general across the U.S., mental health is an unmet need. And we don’t have enough care providers to provide that. I’m a big believer in palliative care because I think that’s probably the next closest thing that we have at Vanderbilt. Palliative care is a team of people, and one thing that they do utilize is social workers and psychologists, and mental health providers. What’s difficult and the challenge that we haven’t been able to bridge yet, is that they come and see us every three or four months and they really need care on a weekly to every two-week basis. Being involved with our palliative care team to help manage stress, and help manage quality of life and the depression and anxiety that comes with having a chronic illness needs a more regular care plan. We’ve attempted to connect with local resources for these families. Some of them have local resources and some of them don’t, but the thing that’s tricky with all mental health is that relationship between the patient and that provider has to work. And even in the patients that have resources in their hometowns, it may not be the right fit for them.

I know there’s a lot of a move right now towards telehealth and medicine to provide that to families that either don’t have the right fit or the right resources. But in the meantime, we have our palliative care team come to clinic with our patients when they come in, just to check in and see what they can do to help. What are the stressors right now on the family? What we’ve partnered with schools a lot because a lot of schools have school counselors. That doesn’t generally work for the older children, but for the elementary school and even middle school children, that’s been helpful. It’s also been helpful with some of the patient’s siblings, as well. That’s probably one of the toughest aspects of this I think, because we can do what we can to care for them medically from a biophysical standpoint, but from a mental health and emotional health standpoint, we are definitely not well equipped as a whole.

I think it’s one day at a time. I know for a lot of our patients, especially at the beginning of their journey with pulmonary hypertension, we hear a lot that we go home and our child seems perfectly normal. And then we come to the hospital and you’re reminded that they’re sick. There’s some hard feelings and difficulty to come to our clinic visits every two to three months because they’re reminded of what is really going on. And then they go home and they get back into their routine, and it’s everyday life. And if they’re not on an infusion therapy yet, then looking at your young child, you would have no idea if there’s anything wrong.

I think when they come and they leave, I think a successful visit is just continuing to build that trust when sometimes they maybe a little bit skeptical of what we’re telling them. And then also that when there are bumps in the road, whether it be they get sick with a cold and they really have a hard time breathing or something malfunctions on their pump, or they run out of medication and didn’t realize it, and they go a few days without it. Whatever the difficulty may be, helping them feel more comfortable about troubleshooting that on their own and able to problem solve from the home, with our help of course. But helping just to grow and being able to be parents or siblings or friends or the actual patient with pulmonary hypertension.

My name is Anna Brown and I’m aware that I’m rare.

Learn more about pulmonary hypertension at phaware.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: #phaware #phawareMD