Treating Pulmonary Hypertension

June 20, 2023
Guest: Amy Chybowski, NP, and Jonathan Milton, MA, BSN, RN, CCRN-CMC

In the final of this three-part content series, join colleagues Amy Chybowski, NP, and Jonathan Milton, MA, BSN, RN, CCRN-CMC as they discuss the different treatment pathways for patients with pulmonary hypertension. Learn about the three different treatment options and the important role of team-based care.

This podcast episode is supported by an independent educational grant from Merck Sharpe & Dohme Corporation.

Episode Resources

Welcome to Heart to Heart Nurses. Brought to you by the Preventive Cardiovascular Nurses Association. PCNA's mission is to promote nurses as leaders in cardiovascular disease prevention and management. 

Geralyn Warfield (host): Welcome to the third of a three-episode mini-series focused on pulmonary hypertension. In today's episode, we'll be discussing how to treat pulmonary hypertension, and I'd like to introduce my guests today, Amy Chybowski and Jonathan Milton, both of whom work at the University of Wisconsin Hospital. Amy, would you start off introducing yourself to our audience, please? 

Amy Chybowski (guest): I'd be happy to. Thank you for inviting me to be here today and join the conversation on pulmonary hypertension and a huge thanks to the audience for your time and interest in learning more about pulmonary hypertension. I'm a nurse practitioner, I’ve had the honor of caring for people living with PH or pulmonary hypertension and their caregivers [00:01:00] for over 10 years. I have cared for these individuals as a bedside nurse at our organization and currently in the ambulatory, as well as inpatient setting as a nurse practitioner. In addition to the clinical care of these folks and their caregivers, I coordinate our pulmonary hypertension program at the University of Wisconsin, we're an accredited center here.  

I also help to lead a patient caregiver support group and very involved with a pulmonary hypertension association, which has been a valuable resource for me as a clinician, and I know is a valuable resource for individuals living with PH as well as their caregivers.  

Geralyn Warfield (host): Well, welcome Amy we're so glad you're here. Jonathan, could you please share a bit about yourself?  

Jonathan Milton (guest): Absolutely. So, I am actually the clinical nurse specialist that supports the advanced pulmonary service that Amy was referring to, [00:02:00] which is an umbrella service that includes the pulmonary hypertension team. My past experience includes being a cardiovascular ICU nurse for over five years working with patients with PH as well as various cardiac diseases and illnesses. 

And most recently Amy has been a major support with my onboarding into this newer role as a clinical nurse specialist, supporting mainly nursing practice on the inpatient side of things. 

Geralyn Warfield (host): Well, I suspect that our audience can tell that we've got a lot of expertise on this podcast, so why don't we go ahead and just get started. And if you think about what it must be like for our patients who receive that new diagnosis of pulmonary hypertension and right-sided heart failure, I suspect that's a very overwhelming moment in a person's life. What kind of treatment options are there for individuals living with PH?[00:03:00]  

Amy Chybowski (guest): That's a really great question and 100% correct and accurate. When I meet patients in our clinic as well as in the inpatient setting at times, who are receiving a new diagnosis of pulmonary hypertension and right heart failure, there are many things that we discuss with them.  

So always my first priority with these folks at the time of diagnosis with our [00:04:00] nursing background is trying to empathize as best I can, knowing I haven't exactly been in their shoes on this journey, but relaying our complete support and helping them navigate this new world. And many people at the time of getting diagnosed with pulmonary hypertension, as you mentioned, get a second diagnosis of right-sided heart failure. And so, it's important in helping them learn about the differences of that and how we treat the pulmonary vascular disease while treating the right heart failure and keeping them informed and supported of our recommendations throughout that initial phase of treatment. 

Jonathan Milton (guest): Right. And there are two different types of pulmonary hypertension and as you focused on, we might discuss things like pulmonary hypertension and noting that we're going to be talking primarily about treatments for pulmonary arterial hypertension. And as we [00:05:00] know as clinicians, there is unfortunately no cure for pulmonary hypertension, but the treatment options that are currently available can improve how people feel, how they can participate in activities, and really focus on allowing that patient to do the things that bring them joy and improve their quality of life. So, I actually think Amy is going to talk about the three classes of medications that are FDA approved to treat PH. 

Amy Chybowski (guest): Thanks, Jon. That's right. So, we currently have three different classes of medications that I describe to patients as tools to help ultimately lower the pressure in the blood vessels of their lungs.  

The three classes of medications for treating pulmonary arterial hypertension in FDA approved group one and group four etiologies is the [00:08:00] Phosphodiesterase-5 inhibitors, commonly known as sildenafil or tadalafil, endothelium receptor antagonists, and prostacyclin analogs. 

Ultimately, all these medications work on a different pathway to dilate blood vessels. They do this systemically as well as in the pulmonary vascular bed, lowering the pressure in the pulmonary arteries of the lungs is our goal, reducing that resistance to blood flow and allowing the right heart to work easier. 

The routes of all of these therapies vary depending on the class, which we'll get into further in a moment, but include oral therapies, inhaled therapies, and infused therapies.  

Geralyn Warfield (host): You've described these three classes of medications for us, and could you tell us now what we would decide as a care team in terms of which therapy to use for which patient? 

Amy Chybowski (guest): Great question. This is not always a straightforward answer. [00:09:00] You know, on paper, when we're working through, we're learning, you know, first as clinicians about a new diagnosis, we think categorically and, “If they meet these criteria, this is what we treat them with.” Well, patients are more colorful and don't always fall neatly into one of those categories. 

That is why it's really important for individuals with pulmonary hypertension, particularly more advanced pulmonary hypertension be referred to an accredited center where there are team of experts that have the ability to properly diagnose the disease, the underlying etiology, and the capability to manage the complex patients that they often are. 

So, the initial and subsequent treatment options that we’ll institute really depend on the severity at the time of diagnosis. We know that there are certain underlying causes or etiologies that present a more challenging or worse prognosis. And clearly we treat, you know, those more aggressively accordingly.  

So, at the time of diagnosis, some people initially will be prescribed to one of the three medications. Some people are initiated on two of the therapies at once, and some are prescribed all three at the time of diagnosis.  

We have more and more data now over the past few years that support starting dual therapy or two therapies out of the gate to reduce mortality risk long-term for individuals. And in individuals who we’re meeting who already have fairly significant or advanced disease, we’re instituting all [00:11:00] three therapies pretty promptly. 

I say starting them all at once, and that's a little bit of a misnomer because these are therapies that aren't easy to come by or that you pick up from your pharmacy around the corner. The PD-5 inhibitor class, which is an oral agent that depending ontadalafil or sildenafil, they'll take one to three times a day. 

Those we find are pretty easy to acquire through our typical pharmacies. The other two classes of medications, so the endothelium receptor antagonists, which there are three currently on the market that we have selection to use from, they're called bosentan, ambrisentan, and macitentan. Those are a once-a-day pill and come through a specialty pharmacy. So, there's an insurance authorization and referral process that our team has robust support systems in place to help [00:12:00] navigate that process for the patients. And then those therapies are actually mailed to their home where they'll receive a shipment every month. 

Likewise with the prostacyclin pathway, these are our specialty medications that come through a specialty pharmacy and are regulated and have various degrees of, you know, working within various insurances and getting them approved for folks. The prostacyclin pathway includes three different routes. 

So there are oral medications, two oral prostacyclins. They are inhaled therapies and there are subcutaneous and intravenous infusions. So, for those folks with severe disease or progressing disease, if they're already on, say, background therapy, one or two of the oral therapies, we'll be considering instituting or adding on that infusion therapy. 

The infused [00:13:00] therapies are continuous, meaning a person never stops the infusion only to change what we call the cassette and the tubing. It looks a little bit different between the subcutaneous and the intravenous routes, but we consider those aspects of how they're taught to self-manage that and care that as sort of the disposable they get taught really to be clinicians themselves and mixing powders and mixing medications via our specialty pharmacies to do that on a day in and day out basis.  

The specialty pharmacies, as I mentioned, are really integral and crucial in helping be the village, be the support for these individuals outside of their care centers. 

 

The half-life of infused therapies is a really important thing for people to know who may not have as much familiarity as Jon and I do with these therapies. Subcutaneous and intravenous Remodulin has a four-hour half-life, so that certainly gives a bit more leeway for if there's any malfunction with a pump or a catheter. 

For those patients receiving intravenous therapy versus the infused epoprostenol or what we know as Veletri has a half-life of four minutes, so much more [00:15:00] safety, you know, education provided to the patients and that sort of thing. But it’s just good to have that as background awareness if you're maybe encountering a patient on these therapies for the first time. 

The individuals who we initially will start with oral therapies or maybe one or two therapies at the get-go, we watch them very closely in our clinic, at least every six months, for signs that the disease is progressing and then we escalate therapy or add-on therapy as needed. 

Jonathan Milton (guest): Thanks Amy, for kind of going over a lot of those things. 

I think what spoke out to me thinking from those nurses out there who are going to be caring for these patients from an inpatient perspective, when they're admitted for whatever, if it's worsening pulmonary hypertension or if they have other types of illness that would bring them to the hospital. 

[00:16:00] Knowing how to care for a patient who's on continuous IV prostacyclin therapy is critical. And just to comment a little bit more about thinking about choosing the right medication for your patients, the most common type of cause for pulmonary hypertension is that left-sided heart disease. 

And so, as you spoke about the different medical therapies, Pulmonary vasodilator therapies are actually contraindicated and can be harmful to those individuals. And even thinking more about causes for PH, patients diagnosed with CTEPH or chronic thromboembolic pulmonary hypertension, they can actually have a procedural or surgical intervention for their chronic blood clots in their lungs, and they can ultimately, maybe even be cured, for their pulmonary hypertension. 

And so, one other thing I wanted to clarify and really [00:17:00] kind of talk more a little bit about was when patients are on the continuous IV prostacyclin therapy the patients end up getting a tunneled central venous catheter that the nurses are well equipped and well thoughtful when it comes to managing these lines. 

When they're admitted, I train my inpatient nurses to think about backup IV access for these patients. I also think about training them on the half-life of specifically epoprostenol or Veletri because four minutes really is a short amount of time when we think about pauses and therapies, regardless of what's going on, if there's an IV pump alarm for a bubble in the trap or something, all of those low-volume patients becomes a critical high volume or [00:18:00] high risk, rather, when it comes to caring for these patients. 

So, just emphasizing that, have we mentioned today that an accredited pulmonary hypertension center is preferred and then these are the reasons why?!  

Geralyn Warfield (host): So, Amy and Jonathan, you have given us a lot of information for us to consider as we are working with these patients. And from what you've described, it's a lot of management and a lot of thought, and a lot of sometimes anxiety from the clinical standpoint as a clinician, as you're working with these patients, but also from the patient side, it sounds like these therapies are difficult for them to manage as well.  

And you've described how they might be on one, two, or maybe three of these therapies and, you know, how are those therapies typically tolerated and what happens to these patients if the disease progresses in spite of using all three? 

Amy Chybowski (guest):  Well, that's the, the ticket, right? All medications have side effects, and [00:19:00] every individual, as we described to them when we're providing education prior to them initiating any of these therapies, oral, inhaled, or infused, is that they could have none, or they could have really significant side effects such that we try, we pause, we try again, we try, we pause, we try again. And sometimes ultimately, we find there are certain classes they just can't tolerate and therefore we don't have that tool anymore to use for them.  

The big, you know, when we talked earlier about how do these therapies work, right? They dilate blood vessels, so they are dilating blood vessels in the lungs. They're dilating blood vessels in the systemic vasculature. So, if you think about side effects that are going to be common with dilated blood vessels, like headaches, sometimes nausea, vomiting, diarrhea. For patients on infusion therapy I'll often notice their skin is very flushed, they sometimes develop [00:20:00] myalgias in their lower extremities and very interesting, many of the individuals on the more advanced therapies, they always describe jaw pain, not everybody, but most with the first couple of bites of eating and then that goes away, or lock jaw.  

So those are the, some of the common side effects and the things that when we're starting a therapy that we really emphasize when we're, you know, going through the history of how, how are they doing since we may have started something, or if they're starting therapies as an outpatient to call us if they're experiencing those things and they're not getting better. 

This is one of the reasons also why we don't really in medicine, like to start two medications directly at once. So, we have a sense of what might be the culprit if they're not feeling well or having a side effect that is really negatively impacting their quality of [00:21:00] life. 

So it kind of works to our benefit that we can always, generally, pretty readily and easily start that PD-5 inhibitor class, relatively soon after the prescription is sent in while we're awaiting authorization for that second oral class, the endothelium receptor class, to get that on board, thereby allowing some timeframe to know how are they doing with that first therapy, before we've had a chance to add on. 

So, as we're starting three therapies out the gate or adding on therapy, you know, over time for individuals who may have evidence of disease progression, you know, we're mindful that we only have so many tools in our tool belt to help them. 

I will say that it's not ever an easy conversation or decision for individuals to decide to go to [00:22:00] infused therapies. We didn't talk a lot about the day in and day out that goes with those, but hopefully shed enough of a light on; it's a continuous infusion, it doesn't stop. They have day-to-day management. They become the experts and how to prepare these medications, manage these medications, care for a central venous catheter, and that can be really intrusive to a person's life. 

So, we really try to be mindful too, about who are the right individuals that are going to be successful with those therapies. You know, there might be patients and there have been patients who we really would love to have them on an infused therapy, but it just doesn't work, you know, in alignment with their goals or what they can safely and comfortably manage. And so, then we use those oral or inhaled tools that we have to help with them.  

Jonathan Milton (guest): Yeah, Amy, I think that speaking about like [00:23:00] the right patient and supporting the patient with the right therapy for that patient is really all about the treatment team and customizing that plan of care like you do every day. 

I think about the social support that we would like for a lot of these patients that would qualify for those IV prostacyclin therapies. And I think that that is like such a major aspect when considering those IV prostacyclin therapies is the social support and having that extra person available to support when able, thinking about going back to the high risk of these medications, if something were to malfunction or depending on where you're at, at home, at the grocery store, you know, these are continuous, like we've talked about.  

So, it's just that social support is something I'd like to, I like to hit home hard.  

Amy Chybowski (guest):  That's a great point. And you know, I think we'd be remiss to, you know, not talk about, and then, you know, switch gears too. Well, you know, we mentioned earlier, this is a progressive disease that we didn't have a [00:24:00] cure for. And despite utilizing all of the medical therapies and tools that we have, there are times where people's disease will progress.  

So if a person is in a situation where we have them all on all the therapies they can [00:25:00] tolerate, maximizing doses things like that, and we're finding that they're not feeling quite as well, they're more short of breath, they're getting lightheaded, they're passing out, you know, we repeat an echocardiogram, we oftentimes repeat a right heart catheterization to help define hemodynamically, where are we at and, and what medication tweaks can we make to their regimen.  

Ultimately, if there isn't a lot more that we can change or optimize medically, then we start thinking about lung transplant as a potential curative therapy for these individuals. 

Our goal is always to really optimize the medical therapies and tools we have to delay lung transplant as long as possible given, you know, the obvious risks and complications associated with lung transplant.  

Geralyn Warfield (host): I'd like to thank Amy and Jonathan for our discussion thus far about traditional and novel treatments for pulmonary hypertension. We're going to take a quick break and we will be right back.  

 

Geralyn Warfield (host): Welcome back to our audience to our discussion about pulmonary hypertension, and we're going to pivot just slightly to talk a little bit about something that we alluded to right [00:27:00] before we broke, and that has to do with the team-based care for this particular disease. 

And I'm hoping our guests can talk a little bit about the roles that the members of the interdisciplinary care team play in both the diagnosis and the treatment of people living with PH.  

Amy Chybowski (guest):  That's true. It really takes a village to care for these individuals living with pulmonary hypertension. 

And we mentioned earlier, or not we, Jon mentioned earlier, this is a, it really is a low volume, you know, group of individuals. At the end of the day, this is a rare disease even though we live it and feel it every day. So, to us, it doesn't feel quite as rare, but the amount of support and care a person really deserves, you know, in their outpatient, in their home setting with their people then, you know, multiply that by like 10 or more on the clinical side or the programmatic and clinician side of things.  

I will [00:28:00] say I, in being in the pulmonary hypertension community for 10 years now and really getting the privilege to learn and get a glimpse of how other programs support and care for these folks and the infrastructures that are developed is really variable. There's many different ways in which a nurse practitioner or a clinical nurse specialist might work differently than in, at our program. So, I think that's important to note.  

Where I work as a nurse practitioner, I diagnose and treat people living with PH collaboratively, along with a pulmonologist and a cardiologist. So, we're considered the provider team for our program. We meet people and treat people in our pulmonary clinic is where we have really our support team. So, our clinical pharmacists, our nurse navigator, really built in on that ambulatory side. [00:29:00]  

So, we do a lot of awareness and education and outreach to all of these different sites within our organization, including our radiology departments and ambulatory procedure centers, because these are people who need things like a screening colonoscopy, and how do we do that when they're receiving an infused therapy or they need an MRI, how do we help support them through that when they can't bring that pump, you know, into the MRI room? 

So, we have a lot of support and infrastructure and those built up to help navigate all of those different things for folks. We also do a lot of [00:30:00] communication and collaboration with outlying centers. So, our patients who might have a pump or catheter problem and, you know, but they live three or four hours away, they might be presenting to their local emergency department and it's variable in terms of what other people might, may or may not know about pulmonary hypertension or these infusion therapies. So, part of patient education is really advocating for themselves and, you know, knowing how to share that information with a clinician who might not have familiarity about the pumps, the catheters, or even the provider team, and connecting them, you know, via our access center with our pulmonary and cardiology team here. 

 

So, we talked a lot about the infrastructure, but more on a really broad basis. More specifically, we, as you've met, Jonathan, he's wonderful resource for our inpatient nursing colleagues. 

And on our ambulatory clinic side, we have a nurse navigator, which is similar to a nurse coordinator position for those not familiar with the navigator roles with, 100 percent FTE dedicated to helping acquire the therapies we talked about earlier.. We are very fortunate to have the support of clinical pharmacists as well. So, we have a clinical pharmacist center, in patient teams who have familiarity with those advanced therapies. And then in our ambulatory clinic that really provides a really nice layer of resource and education for initiating new medications.  

We have a social worker who joins our team meetings weekly and helps us making sure patients have the access they need and resources to, you know, really all the things that go beyond just their medications, oxygen they might need, or supports in the home, and that sort of thing. And then respiratory therapists are really essential to our inpatient and ambulatory teams as well. 

 

Jonathan Milton (guest): Yeah, and just thinking about just pivoting and thinking more about the in-hospital team, inpatient side, I know you spoke a lot about the ambulatory support side, but something I found that, the beauty of the program here, is that - I spoke how I support the advanced pulmonary service. And what does that mean?  

The pulmonary hypertension team is a subset group underneath advanced pulmonary, and the lung transplant patients end up under the same service. And so, if a patient with PH progresses and the team supports them and decides that lung transplant is an option, the same providers are caring for these patients. 

And so, it truly is a continuity of care, in my opinion, type of setup, and I speaking about the [00:34:00] interdisciplinary team, it's just, it's a beautiful thing when they can come together and see the patient holistically from the beginning of their disease and wherever that may take them. And so, that’s something I just noted about our program that I really appreciate, and our inpatient nurses appreciate as well. 

Thinking about some of the other coordinated care treatments from the inpatient side, our PH pulmonologists or PH cardiologists provide inpatient treatment management and coordination. The unit that I support, our nurses are trained specially for these patients as well as mainly caring for those patients on IV prostacyclin therapy. 

And so, we didn't really talk about kind of the location of when, if we were to start an infused prostacyclin, what does that look like and what level of care are they? They will be cared for by an intensive care nurse in our critical [00:35:00] care department. And so, I collaborate with actually another clinical nurse specialist that supports initiation of therapies under the direction of a provider like Amy. 

And so, that happens on the inpatient setting in the intensive care department., we support the initial up titration, watching out for those various side effects that Amy discussed. Thinking about excess initially when initiating a therapy, those vasodilatory side effects such as like warm extremities, flushing, even hypotension. 

Which is a reason why they're in an ICU versus in an intermediate care unit, which is the one I support for patients who are typically on a stable dose of IV prostacyclin therapy. And so, those, again, those ICU nurses are the ones that are caring for these patients. 

When we initially start this treatment the [00:36:00] pulmonary hypertension team, some of our providers collaborate or are actually the critical care physicians managing their service, and so, that is another way that we really collaborate to support the patient.  

You know, as an accredited PH center, the nurses that I support are mainly patients who, or nurses who care for patients on a stable dose of IV infused prostacyclin therapy. 

And so annually we collaborate with a nurse educator and Amy, who plays a huge role in making sure the nurses feel safe and competent with caring for these patients. At our institution, we transition them from their home pump into an Alaris IV pump that we manage on the inpatient side. And so, transitioning from a home dose concentration to hospital inpatient based concentration of [00:37:00] therapy requires a switchover. And thinking about those half-lives of those medications, specifically the Veletri, just going back to that Veletri or epoprostenol, training those nurses to feel confident and knowledgeable with the switchover is critical. And so that's another aspect of the interdisciplinary team, just supporting these patients and making sure that the staff feel comfortable managing them.  

Geralyn Warfield (host): Well, it obviously takes a team on the part of clinicians to ensure that the right therapy is given to the right patient at the right time, and part of the team-based care that our nurses are accustomed to thinking about is the patient as part of the care team. And you've described quite well about how some of these patients are required to actually be their own caregivers in some cases in terms of application of, you know, medicines and those types of things that they're doing at home. 

But I'm wondering, based on what you've described earlier [00:38:00] about infusion therapies and how intrusive they can be to a person's daily life, how do you work as a team with the patient to determine if infusion therapy is really the right kind of therapy for them? 

Amy Chybowski (guest):   It's a lot of conversation and education upfront in trying our best as providers to describe what it means to manage a continuous infusion, all of the different components of that. Ideally, we like to do this in the ambulatory setting when we can be sitting with a person in their clothes, with their caregiver, you know, right there and showing them the demonstration pumps that we have so they can touch and feel and see, you know, what the various equipment looks like. Going through resources online to give them a visual [00:39:00] of what does it look like to have a single lumen tunneled Hickman catheter, which is that central venous catheter that we use at our program. What does it look like to have, you know, and feel like to have these pumps and, “How do you do that? What do you mean I have to do this every 24 hours?”.  

We do, however, sometimes are in the position rather to have this conversation in the inpatient setting and if a person might be quite critically ill and we're having these conversations in the ICU with pumps alarming people in and out and that sort of thing. And [00:40:00] as a provider who's had multiple of these conversations, in both of those scenarios, it always feels different when a person is lying in that hospital bed and feeling like, “Well, this is the life-saving option, of course I need to do that.” 

. So, we're, [00:41:00] we try to be very mindful upfront and having certain gestalt of, “Yeah, we think this person, we think could probably manage this.” or, “Wow, it's pretty clear to us that this is not going to probably be a safer, ideal therapy for this person.”  

So, it's not a one size fits all thing. But certainly if there are complications like recurrent central line infections or catheter related malfunction problems, then we really have to think thoughtfully as a clinical team, “Wow, are we really setting this person up for success or should we consider an alternative therapy for them?”  And I will say, you know, too, and there's people who as we're following and we're, you know, concerned we could be doing better for treating your disease, we'd like to talk about instituting infusion therapy. Understandably, many people are resistant and reluctant and don't really want to do that. And so, you know, we have to check that with ourselves and continue to bring that up and you know with them as [00:43:00] time goes on.  

But ultimately, I see our role as providing them with the information they need and our recommendations if they're willing to hear them. But their choice on whether or not this is a right sort of therapy for them.  

Jonathan Milton (guest): Yeah, Amy. And then I, I think that thinking about supporting the patient from what we do with, from the time they decide, “Yes, this is for me.” to initiation and then that maintenance or management for that continuum of care. I think it just speaks to how it's not always just a straight shot of like, “Yes, I've decided, and like this is… I decided, and I think I can do it and I'm going to be fine with managing this and I feel great every day managing this psychologically and just managing these IV pumps at home. “ 

And so, I think it just speaks to our clinical team with how we continue to manage and support that patient [00:44:00] from illness to wellness. 

Keeping them even with this chronic illness, it's like supporting them feeling well at home and when they have any type of illness that continuum from wellness to illness, just supporting them that entire time.  

I know from the inpatient side, whenever we have a patient that's admitted, we do that type of education again. And we kind of talked to that patient about how is management going and kind of talked to that patient about when they have to go to…if they were to have to go to another type of facility, like an emergency room because they're three hours away, having them own that type of level of care for themselves to educate others who might not be at an accredited PH center, “Hey, don't flush my catheter.” You know, those type of things. And like the detriments, if those things were to happen. And so just once they've decided it's right for [00:45:00] them, that support and education is kind of a continuum. It doesn't just stop at the time of deciding, “Yes, this is right for me.” So just throwing that out there as another, just way to support that patient that we do here. 

Geralyn Warfield (host): Well, so speaking of education and information, what other resources are available for people living with PH or their caregivers or even clinicians?  

Jonathan Milton (guest): Amy, I'll let you kind of speak to this too, but I threw in there just thinking about the Pulmonary Hypertension Association website is such a great place I think that I've learned a lot of information from, and I think that's a great start for patients and families, for resources to learn about the different types of PH, to learn about the different treatment options and management. 

It also has a really awesome feature that you can actually find and search for an accredited pulmonary hypertension care center that's near you, or the closest one near you. So that's one resource. Amy? 

Amy Chybowski (guest):   Yeah, I agree. [00:46:00] I mean, and when I have the opportunity to meet patients in the clinic or even in the hospital for the first time, there are a lot of internal resources that our program has developed to provide in addition to all of the verbal communication they're receiving and education something they can go back and look at. 

So, they receive a folder of descriptions about pulmonary hypertension, heart failure management. That's, we didn't go into today, but a very important aspect of care for these folks, and I always include in that resource packet information about the Pulmonary Hypertension Association. They're a valuable tool for clinicians. 

I've been a part of the PHA family myself since I started doing pulmonary hypertension. They have fabulous programs [00:47:00] to help educate clinicians who might be new to the world of pulmonary hypertension. We have this fabulous network of being able to ask questions as they come up, “How, how does your program do this? How are you handling that?” We can, you know, confidentially discuss those aspects.  

And then for people living with PH and their caregivers, you know, I've learned everybody's different in terms of how much they want to put themselves out there or what's helpful to them or not, but there are in-person support groups that are hosted across the country and the Pulmonary Hypertension [Association] has a really wonderful tool of being able to actually do that on a national level. So, they have recurring meetings for individuals with CTEPH, you know, that kind of sub special type of pulmonary hypertension we brought up earlier, or [00:48:00] young adults who may have different concerns or needs than somebody at a different stage in their life.  

Geralyn Warfield (host): We are incredibly grateful to Amy Chybowski and Jonathan Milton for sharing their expertise with us today about pulmonary hypertension treatments. We'd also [00:49:00] like to thank Merck Sharp and Dohme Corporation for their unrestricted grant funding for this particular podcast episode. I am your host, Geralyn Warfield, and we will see you next time. 

Thank you for listening to Heart to Heart Nurses. We invite you to visit pcna.net for clinical resources, continuing education, and much more. 

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