The ATTR-CM Arc: Helping Patients Navigate Their New “Normal”

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  

Moderator: Kim Newlin 

[00:00:02] Welcome. I’m your moderator, Kim Newlin, and I’m joined today by Janell Grazzini Frantz and Johana Fajardo, two nurse [practitioner]s working in different roles but making a difference every day for our patients with transthyretin amyloid cardiomyopathy. 

We’ll use the acronym ATTR during today’s podcast. ATTR amyloid cardiomyopathy is a disease of protein misfolding, leading to amyloid fibril deposition and organs and tissues. 

Once considered rare, it is increasingly recognized as a cause of heart failure. Today we’re going to discuss professionals and others who can help, connecting with resources in your community for patients with ATTR, and resources for your patients and their families. 

We encourage you to take advantage of the related resources to help you in your clinical practice at pcna.net/ATTR. Welcome Janell and Johana. 

I thought we could start off having you each explain your role in taking care of patients with ATTR, and I’ll have Janell go first. 

Speaker 1: Janell Grazzini Frantz 

[00:01:16] Hi Kim, I’m happy to be here. I was first approached to join the Mayo Cardiac amyloid clinic to help manage the amyloid patients’ fluid, basically, and then to take the questions and/or see patients when the cardiologists weren’t available. 

I see new amyloid patients after they already met with the cardiologist. The premise being eventually they will need me. They will need more touch. And they’ll need someone that they can call urgently. I’ll already know the case and they will know me. I tell them we’ve just expanded their team, should they or their local providers need assistance. 

[00:01:49] I do the bulk of the research visits and manage many patients–unfortunately, the majority from afar—in regards to their amyloid and associated intricacies and idiosyncrasies. 

I also sometimes will get a call from hematology that will request my assistance for fluid management or other nonhematologic issues of their amyloid patients. 

Moderator: Kim Newlin 

[00:02:09] Thank you–so touching those patients and their families in several ways. Alright, Johana. 

Speaker 2: Johana Fajardo 

[00:02:15] Thank you. Thanks for inviting me to this podcast. So, I started working with amyloidosis patients back in 2012 at Johns Hopkins Hospital when I first graduated as a nurse practitioner as a brand new grad. At the time there was no cure for ATTR patients, and hence the management was focused most on supportive care to reduce symptoms and improve quality of life.  

It was difficult to see how great people succumb to this terrible disease, especially those that were diagnosed too late. Therefore, I took an interest in this population and decided to work on improving recognition of red flag symptoms, facilitating the diagnostic process, and expediting the referral to treatment options. 

[00:02:52] At the time, we created a support group to provide a venue for patients to meet others with the same challenges and same strategies to cope with this disease and hopefully feel not so alone.  

Since then, I’ve moved to Charleston to assist in building an amyloidosis center of excellence—the first one in the state and in the South. And then with the new development of medications, we have a light at the end of the tunnel, but we still face the same challenges, so I’m still there to manage symptoms like volume build-up, heart failure symptoms, and also to facilitate the multidisciplinary management these patients require. 

Moderator: Kim Newlin 

[00:03:25] Where did you learn about how to best care for patients with ATTR and where would you recommend someone interested in learning more go, such as websites or professional organizations? Johana, I’ll have you go first. 

Speaker 2: Johana Fajardo 

[00:03:37] I was fortunate to have great mentors such as Dr. Dan Judge who took me under his wing and helped me navigate the amyloid world. 

There was a lot of literature out there, but I had to Google every term. But everything was high level and I used to get lost with the amount of information. As a nurse, I always wanted to also have the take-out points on how to apply the current data to real-life practice and that was hard to find. 

So, more recently we created a book that contains a comprehensive review of amyloidosis and I find it to be a really good source of information at my level and at the nurses’ level. We tried to put all those concepts that are really high level to our level for everybody to understand and to use in everyday practice. 

(Janell was actually one of the authors), but it was created to meet that need. I do use that resource almost every day because it contains things that are outside of my specialty, like cardiology so it has a lot of GI, neurology. This is a multi-organ disease, so we all have to see if the patients are having other symptoms that require management.  

Obviously other resources, like going to national conferences, including HFSA (the Heart Failure Society of America), the International Society of Amyloidosis, the American Association of Heart Failure Nurses, the Amyloidosis Support Group Association–they have a lot of educational tools for patients at the novice level. I found them to be really helpful, so would definitely recommend those. How about you Janell? 

Speaker 1: Janell Grazzini Frantz 

[00:04:59] Well, I was the first amyloid NP as well, so you’re kind of green at this, and I agree with you–6 years ago everything was high level. I literally had to have a CHEAT SHEET for all the acronyms to go, “What does that mean again?” 

Because I couldn’t get through the articles, since it was quite sparse. I got to spend some time with the hematologists, but they didn’t have a lot of amyloid patients back then, so that wasn’t particularly helpful. I read every single educational brochure I could get that was patient-level. 

We have YouTube videos and I watched those. I went to the amyloidosissupport.org conference and watched all their videos which are really, I think, excellent. They’re geared for patients, [00:05:37] but you’re going to get a lot out of it.  

I leaned on—and still lean on—the amyloid cardiologists to further my education, when the journal articles kind of aren’t cutting it, or I have a challenging diagnostic or management dilemma. Ongoing, I do everything I can to attend our monthly multidisciplinary amyloid meetings at Mayo. They review breaking trials, trial enrollment, ideas for trials, management, and diagnostic challenges. 

I review the International Society of Amyloid bimonthly journals: tear this out, read this. Read the articles that pop up on my news feed or when I stumble across looking for other things. 

[00:06:10] Both Johana and I attended the ISA Virtual Conference in 2020; if you can, grab an amyloid conference.  

Finally, I will agree the book is really well done. And not just because Joanna and I are authors in it. It’s just nuts and bolts and you can just go to this chapter or that chapter. I just pulled it out the other day. I was looking for something and I’m like, “It’s all right there.” It’s a nice book to have. In fact, I bought one for our other NPs in heart failure and one for our nurses as well. 

Moderator: Kim Newlin 

[00:06:39] And I think what it means is that we have the right people on this podcast, since you guys are both the authors. So, we’re glad that you’re the one writing it, and you’re the ones here. 

Moderator: Kim Newlin 

[00:06:47] So, we talked about support and resources for clinicians, so now taking it back to the patient: what types of resources do you have in your community that you find most helpful for your patients with ATTR? Janell? 

Speaker 1: Janell Grazzini Frantz 

[00:07:00] Well, because Mayo Clinic is in rural Minnesota, we’re only about 100,000 people. We don’t have the depth of a major metropolis and a large population, and therefore there is no amyloid support group here. Our amyloid nurses do the initial amyloid education, and they remain an ongoing source for information for the patients, as do all of us that see the patients. 

We recommend that they watch the YouTube videos and then read the Mayo brochure on Amyloid; and then we also have the amyloidosissupport.org booklet and I tell them to go to that website. I find it a really nice website. [00:07:40] It’s got the support group platform if they want that. It’s a portal for breaking trials, enrollment openings, education conferences.  

They can also sign up to be alerted to any or all of the information. So, for me, I’ve signed up to be alerted to breaking trials and FDA approvals, and that’s the only time I get an email from the organization, unless I go there myself. 

So, I’ve found that to be very helpful for patients, too, and they like it. 

Moderator: Kim Newlin 

[00:08:05] Great. Thank you. Johana? 

Speaker 2: Johana Fajardo 

[00:08:07] So, South Carolina is a very rural state as well. And, although Charleston is a bigger city, most of our patients have to drive hours to get here. Prior to COVID, we had an inpatient support group, along with the Amyloidosis Support Group Association that would support us. And that provided a ton of information and resources to our patients.  

However, post-COVID, we have not been able to meet in person and we have recommended and maximized our online and virtual resources such as virtual visits, virtual support groups through the Amyloid Support Group Association; and now that things are kind of getting back to normal, we are actually considering to keep those resources available for patients who live far away or unable to come and see us in clinic. 

[00:08:46] So, we are here. We’re trying to work on our website and have a lot of non-branded patient education tools. And pairing up with an association, research consortium and other national international resources to try to get the information out to our patients, even if it is through virtual platform. 

Moderator: Kim Newlin 

[00:09:03] Thank you. So, if you had one tool that you could recommend to a clinician, what would be your favorite tool? Janell? 

Speaker 1: Janell Grazzini Frantz 

[00:09:09] I have to go back to our book, A Guide for the Diagnosis and Management of Amyloidosis. If that’s all you have and you have no Internet, I think it would be the best thing to have. It’s got the acronyms, it just walks you through it. 

Moderator: Kim Newlin 

[00:09:22] Johana? 

Speaker 2: Johana Fajardo 

[00:09:23] We’re both passionate about the same book. I was privileged to be one of the editors. It was like I want everything at the nurses’ level. It’s a really good tool for somebody who’s starting out, but also at mid-level, also advanced level—because we try to cover the different systems involved in amyloidosis.  

As a cardiology nurse practitioner, I’m more familiar with the cardiology stuff, but when you go to the neurology chapters like Wow! Eye opening. It’s taught me that, of course, there’s some tricks on how to manage those symptoms, but more when to refer a patient. When to call for help, where to get it? Where are some resources? It includes all the new medications for ATTR. As well as AL, right? Because there are two types of amyloidosis, so I think it’s a good resource for anybody out there. 

Moderator: Kim Newlin 

[00:10:06] I’m going to challenge you with one more question then and Johana, I’ll have you go first. Do you have a favorite, go-to patient education tool? 

Speaker 2: Johana Fajardo 

[00:10:13] Yeah, so I think amyloidosis support groups [amyloidosissupport.org] website has a lot of the videos. Written resources are great, but the website and it has a lot of videos on current research trials. 

It has a lot of information for the brand-new patient, for the patient that has been having this for a long time, and is looking for research outside of the local area. 

It’s a really good tool to share and it’s not branded. 

Moderator: Kim Newlin 

[00:10:35] Janell, you mentioned that one in your earlier comments. Would you agree with that? 

Speaker 1: Janell Grazzini Frantz 

[00:10:39] I would totally agree. When they go to the meetings, they can connect with other people that have the same variant and people are like, “Oh my goodness! That person over there has the same variant!” and they can connect. 

And how do you manage this; and being privileged to be able to sit in on one of those meetings really was kind of amazing, to see how much the patients got out of it. 

Moderator: Kim Newlin 

[00:11:01] Never underestimate the power of what they can learn from one another. Before we wrap up, do either of you have any last comments? 

Speaker 2: Johana Fajardo 

[00:11:07] Well, I’d like to say that you know currently PCNA has a great blog that has a lot of insight on current topics and the role of the nurse navigator. So, I think that’s another great tool that we have out there and that we should definitely take advantage of. 

[00:11:20] Thank you so much and again, we obviously have two clinical experts on this podcast episode today, both Janell and Johana—thank you so much for your insights and your clinical pearls. 

We’d also like to thank the audience for joining us for “People, Places and Things: Key Resources for ATTR Nurse Navigators. 

Remember that you can access the podcast series and the related resources at pcna.net.net/ATTR. And, of course, a big thank you to Pfizer, Inc. for support of this podcast series. 

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