Join us for a timely conversation during Heart Month, where clinical cardiac navigator MaryAnne Poling, cardiologist Dr. Parichart Junpaparp, and heart failure patient Ken Mueller offer invaluable insights and personal stories. Through an in-depth discussion, we cover the causes, symptoms, and diagnosis of heart failure, emphasizing the importance of distinguishing it from other conditions like COPD or anemia.
Ken Mueller shares how he far surpassed his six month diagnosis living now over five years later. By focusing on empowerment through understanding, we aim to inspire listeners to not only manage heart failure but to live positively and thrive.
Transcript
Cami Smith:
Hi and welcome to & so Much More. I'm your host, Cami Smith, and we are in a bit of a different space and we are over at our Centra College in a beautiful studio that they've allowed us to film in, and we're having a conversation that's very timely for heart month. We're going to talk about heart failure and what it looks like to live with that as a diagnosis, but then also put some definition and education around that for those of you who are listening, and so we can bring awareness to this type of diagnosis during heart month. So I am here with MaryAnne Poling and she is a clinical cardiac navigator, or cardiac clinical navigator. That correct, correct, okay, make sure I'm getting that right.
Cami Smith:
And we also have Dr. Junpaparp, who is a cardiologist at the Centra Heart and Vascular Institute. We also have one of our patients, Ken Mueller, who has very graciously allowed us to bring him in to just share his side of what his story has looked like as he's lived with this diagnosis. And so, as we're kind of elusively referring to diagnosis over and over again, let's put some definition around that. So how would you, Dr. Junpaparp, how would you define heart failure?
Dr. Junpaparp:
So the heart failure is a condition that the heart cannot keep up with the supply and demand of the body. So when the heart is not in the right functions it cannot circulate in the blood well and a lot of patients will feel tired easily when they try to do things and sometimes getting more short of breath. And as the condition progresses they may start retaining fluid and have some swelling in other parts of the body like legs or stomach Okay.
Cami Smith:
So is there typically like a catalyst for this, or are there things that lead to heart failure?
Dr. Junpaparp:
Yes, the most common cause of heart failure is actually high blood pressure and coronary heart disease, okay, which is basically a blockage of heart arteries that make the heart cannot get the nutrient or oxygen. Other than that, there are some other causes, like leaky heart valve, other reasons to directly damage the heart, such as viral infections that cause myocarditis or inflammation of muscles, some toxins, such as alcohol too much alcohol can damage the heart or other substance use like cocaine can damage the heart and other rare conditions that, like congenital conditions or any genetic driven.
Cami Smith:
Yeah, so some of the things you talked about, like shortness of breath and what are some other symptoms that if someone is maybe considering or they're experiencing and they're like what, what should I do? How do I know that this is what's happening and what? Where do I go?
Dr. Junpaparp:
That's a very good question because all short of breath is not always from heart failure. Um, commonly patient can have COPD, emphysema or asthma yeah, leading to short of breath or even anemia can cause shortness of breath. So the heart failure is a diagnosis that needs both clinical assessments and some investigations. So we can use some blood work that can show a marker of heart failure. We can do an electrocardiogram to look for abnormal rhythm and, most importantly, we do an echocardiogram, which is a sonogram of the heart that can let us see how the heart is squeezing and look at the artery structure inside the heart, like a heart valve, to see if there's any narrowing or any leakiness or if there's any evidence of heart attack.
Dr. Junpaparp:
That we can see from the scar, that can visualize on the echo, and usually then we'll add more investigation based on the finding Whether a patient needs to be looking to blockages by a heart cat, for example.
Cami Smith:
Yeah, so we've had a lot of conversation lately on a lot of our channels at Centra about where to go for different types of emergencies, and so for someone who is experiencing something that they are believing to be in line with this, this is an emergency care visit, correct, like this isn't a go to your urgent care and see how you're doing, or what would you suggest.
Dr. Junpaparp:
So it depends on how bad is the situation. A lot of times, if they just have short of breath when they walk or exerting, it's not yet that emergency. Certainly they can either see the doctor or refer to cardiologist for further workup. But if it's come to the point that they're very congested, which means they have pretty advanced symptoms like it's fluid retaining.
Dr. Junpaparp:
Can't breathe, just talking, yeah, um, and you know, cannot do any activities at all. Definitely that need to be evaluated in the emergency room, yeah, and perhaps hospitalized, which is going to make it faster to get diagnosis than the outpatient world yes, absolutely so.
Cami Smith:
Uh, what are some treatments if this is a diagnosis you receive?
Dr. Junpaparp:
Mostly if they are congested, the first thing is to decongest by um, have having them take the water pills or diuretics that will get rid of fluid for them. And then, based on what type of heart failure. Because we have a type of heart failure that's weak pump and stiff pump. The weak pump we have more drugs that can help strengthen it up. There are many kinds, actually, and other than that, we look for a course, like I mentioned earlier, fix. The course is important, like putting a stent in if they have blockages, fixing the leaky heart valve and stop drinking alcohol or using any drugs that might make the heart weak. And ultimately, lifestyle change is also important and that's why we have our CHF navigators or nurse to help educate them and let them know what to avoid and how to live with heart failure.
Cami Smith:
Yeah, and I'm glad that you mentioned the cardiac clinical navigator, because what I would like to ask and ask is what does it look like to live like this? What does it look like, from diagnosis to treatment, to this is a lifestyle now and then? What role do you play in that?
MaryAnne Poline:
So when the patient is in the hospital, a lot of times I come alongside them as the navigator and do some education with the patient and with the family to tell them you know what it's going to look like, what type of lifestyle changes they need to do with medication and, if they can't afford those medications, what type of assistance that we can do in the office to help them afford those, do in the office to help them afford those and what type of foods that they need to be aware of and what type of foods that they need to start eating.
MaryAnne Poline:
Okay, and you know what type of activities they need to start incorporating and helping them communicate with the office the cardiology office, and with our navigators there. They work really hard to continue the care that we start in the hospital, our navigators there. So it's about communicating with the office and also, as navigators, we really advocate for the patients and help communicate with other people in the team. If the patients really have a struggle with transportation or with some other issue, we communicate with them or we help them get other types of assistance.
Cami Smith:
Okay, so you are like advocate and partner with these patients as they're moving forward.
MaryAnne Poline:
Yes, and hugely try to educate them too, yeah, so that they feel like they have that emotional support, because it can be kind of hard.
Cami Smith:
But the biggest thing that we try to convey to the patient your heart isn't stopped, this isn't a death sentence, you know, we're here for you, yeah, and I think that is so important because whenever it comes to illness, diagnosis of your heart, I mean, that just feels so heavy, it feels so, so crucial to just life, and so to have someone there walking beside you to just help you understand and see what your options are, that's gotta be huge. Is this for inpatient and outpatient? How long does that relationship continue?
MaryAnne Poline:
It continues throughout the disease process. So, inpatient, I am the heart failure navigator, along with my other partner, Lynn Mays, and then we also have several outpatient clinical navigators too Desiree Mays, sarah Landon and Jacqueline and Jacqueline and they work extremely hard on our team along with other people in the clinic. They all work and get to know our patients and have a very close relationship as an outpatient.
Dr. Junpaparp:
We try to empower patients who left the hospital that they can help managing their symptoms and they can do things to make them know they feel better. Yeah, we told them what symptoms to look for. How do they, for example, weigh themselves every day.
Dr. Junpaparp:
You may start to retaining fluid that will show on their weight gain yeah if that happened, they can contact our office directly and we can tell them we can tell them on the phone of what to do, and this is very common and this is the best way to keep them outside of the hospital, because yeah every time they go back in the hospital. That mean they can get sicker yes, yes.
Cami Smith:
so wow, this is such a partnership there's, so there's got to be so much communication that's absolutely necessary to to do this well. So it it obviously takes a team. It is and I want to kind of transition to you, ken, because you've experienced all of this and so you were diagnosed five years ago now and have over five years ago now Five and a half years.
Cami Smith:
And you have lived long past your original diagnosis, which is incredible. But why don't you share a little bit about your journey with us, starting in that diagnosis in 2019?
Ken Mueller:
Well, I was at work and I was feeling kind of weird and everything, and I got dizzy and that's pretty much the last I remember. I drove myself home, oh wow, and then I called my doctor and he told me to get right to the emergency room and they did a what do you call it? A cart pass? Yeah, a cart pass on me and they couldn't get it. It was blocked, it couldn't get all the way up.
Ken Mueller:
Oh wow they couldn't get all the way up. Oh wow, and so then they sent me to Lynchburg General and when I talked to the surgeon he didn't want to do the surgery. They couldn't do it, I guess. So then Dr Renison, who was my doctor at the time he connected with Duke University, Okay and I went down there and I talked to the surgeon down there and gave me a pretty final notice to make my mind up, that was it.
Cami Smith:
I think you shared earlier six months correct yes, and so I'm sure that played a pretty large role in your right. Let's do what we need to do, right? So, um, here we are, a lot longer than six months later. How are you feeling? How are you? What is it like to live with this?
Ken Mueller:
Well, it's a little bit of a change of course. You know, of course, yeah, I live with batteries during the day and then I get plugged in to an outlet at night, and it's the adjusting of making sure that you remember to change your batteries, which I forgot a couple times. Oh, wow, it's kind of scary, but I do carry what do they call that bag, a controller In the bag and everything. Backup controller yeah backup controller and I carry four sets of extra batteries with me at all times.
Dr. Junpaparp:
Yeah, I got them right in the car there. I just want to add that what they did surgery at Duke is to implant left ventricular assistive device oh, okay, which is basically an artificial heart pump. Back then, ken Heart was very weak and they could not do a bypass surgery for the blockage because it's too risky, yeah. So instead of that, they offer the artificial pump which basically replaces the heart function completely on the left ventricle, which Ken's problem was.
Dr. Junpaparp:
So that's why he has this control and battery that run the pump internally and he has some dry blood side that has to be cared and cleaned every day by the nurse. So it's a lot of lifestyle change, honestly, but it's something that technology has helped patients live longer, from five years of I mean sorry, from six months of life expectancy, and now he's been here for five years and still doing very well.
Cami Smith:
Yes, yes.
Ken Mueller:
I was told that I had every artery blocked from 60 to 100 percent.
Cami Smith:
Oh my Wow. I mean, can you remember because I know this was quite a long time ago, but can you remember, like, how you feel now compared to how you felt then with that type of blockage?
Ken Mueller:
in your body. Oh, I feel much better, yes, much better. Yeah, when I think about it. Yeah, because I wasn't able to really navigate at all.
Cami Smith:
Yeah.
Ken Mueller:
But I didn't realize it at the time.
Cami Smith:
Yeah. You know, so what would you say to people who are listening, who are just kind of feeling how you felt a little bit over five years ago, where you said you just didn't feel right, you knew something was wrong? What level of attention did you have to give yourself? How would you advise someone who maybe is kind of right where you were?
Ken Mueller:
My advice would be if you start feeling any symptoms like that the dizziness or anything get right to the doctor. Emergency room.
Cami Smith:
So often we push things down yeah and I did for a while.
Ken Mueller:
Yeah, you know I was thinking it was something else. I was, I got diabetes, so I was thinking it was diabetes.
Cami Smith:
Oh wow, I'm putting the blame on something else. Yeah, no, and that's so easy to do. It's so easy, I think, especially with how busy we all are right now, just to push things down, to justify it away. And that relationship with your physician is so important for them to even know, especially talking with you Right here.
Ken Mueller:
He's the best of the best.
Cami Smith:
I love that. So what has that relationship now for like? The continuum of the care that you're receiving here at Centra? What does that look like for all of you?
Ken Mueller:
Perfect. I mean, I got a fantastic nurse that comes out, you know, to change my bandage and that there she's a pleasure, and when she's out there, if she can help me do anything else, she's always willing to do it.
Cami Smith:
Oh yes.
Ken Mueller:
She's fantastic.
Dr. Junpaparp:
Yeah, well, I mean Ken has this LVAD so he still have to follow up once or twice a year, Duke. But we do a shared care, meaning that we also alternate the visits. So I see Ken every three months in alternate, so that way he doesn't have to drive all the way down, which is three hours drive from his house, and we have frequent blood work that we have to check, monitoring the pump.
Dr. Junpaparp:
And most people, patients will need to stay on blood thinner, for example, but unless they have bleeding that's we have to cut back or stop it. But other than that a lot of our patients can live a pretty good normal life. Yeah, you know this is for mostly advanced heart failure patients, but not every heart failure patient would need to have this pump put in. You know a lot of them that has milder symptoms. They, you know they can just manage with medication.
Cami Smith:
Yes, and so, moving forward, how do you advise patients? Because it's obvious, lifestyle changes, but it's also taking care of yourself in a very different way. So what are some of those guidelines or things they have to adhere to that you share?
Dr. Junpaparp:
So I mean for those who don't have any heart problem, I would say prevention is the best way. What you can do is basically live a healthy lifestyle. You can do is basically live a healthy lifestyle. Basically exercise every, you know, three or four times a week, 30 to 40 minutes at a time. Eat a healthy diet. If you have any medical problems, such as diabetes, high blood pressure, high cholesterol, make sure you get them under control. Yeah, and that's all you can do.
Dr. Junpaparp:
You know, don't smoke and don't drink too much um, basically yeah yeah, it's um, and sometimes you can't control things like aging, genetic driven or viral infections. And if somehow you have heart failure symptoms, just follow up with a heart failure team and take medication, right and um, change your lifestyle again and again. Yeah, that's all we can do to help prevent a disease and at least, if you have disease, prevent it from progressing.
Ken Mueller:
Yes, that is one of the big things to make sure you take your medicine right. Yes, yes and on the time that you're supposed to take it, because different things can happen if you don't. I know that.
Cami Smith:
Absolutely take it, because different things can happen if you don't. I know that absolutely well and especially when I think about your situation, like you have to be very keenly aware of, like the battery life you have going on, the time you need to take medication, and so you have to be feeling well to to be able to do those things. Um and so in allowing and really honoring yourself, I think in taking care is the best way to really do that. Set yourself up for success.
MaryAnne Poline:
And I think too, going to a yearly checkup. You know, catching things early, yes, so that way you know we can catch things so early and you know, sometimes it's just a minor little thing we can treat.
Cami Smith:
Yeah, and I love that you said that, because we always come back to have a good relationship with a primary care provider. It is so important. Somebody who, who knows you, who sees you year after year, who has seen how your blood work has, you know, fluctuated, and it's just, it's so. It's so important. And so when conversations like this happen, when you're feeling something different or you can put a finger on it and get sent to the proper places, because it's all I mean, it's all connected. I think when you think of so many people, think that you know, if you're sick, you go here. If you have heart, you go here. If you have heart, you go here. Having a relationship with your primary care can ensure that you are directed to the right places, because it's a large system working together, and so I think that's a really good point.
MaryAnne Poline:
Yeah, and most of the patients that I go to teach will tell me that for months and months their socks were tight from the fluid and they didn't go and speak to their doctor. They just thought it was a normal part of aging. They thought they were just getting out of shape from the shortness of breath. So you know, don't be afraid to go and talk to your doctor. Sometimes it is getting out of shape or other things, but it doesn't hurt to talk to them.
Cami Smith:
Yeah, can I see you nodding out of the corner of my eye? Are there some of those things in hindsight that you are experiencing, that you kind of think back and like why did I not notice that or pay attention to that?
Ken Mueller:
Well, you know, like I said a lot of things, I blamed on something else. I figured I had the diabetes under control when I really didn't. Yeah, and you always want to put the blame on something else.
Cami Smith:
It's true, it's true.
Ken Mueller:
I was pretty good at that for a while.
Cami Smith:
Well, thanks to your team, you don't have to do that anymore.
Ken Mueller:
No, well, thanks to your team, you don't have to do that anymore. No, no, you know. I mean, I've called Dr Jun during hours that she wasn't working because I was worried about something. You know, yeah, yeah, and she's always been there, always, always.
Cami Smith:
Oh, I love hearing that.
Ken Mueller:
It's been great and, like I said, it's the same way with my nurse too.
MaryAnne Poline:
Yeah.
Ken Mueller:
So all in all, when you combine all that together, I'm pretty lucky, pretty darn lucky well, we're glad that you're here.
Cami Smith:
Is there anything I haven't asked you guys that you feel would be important to mention or include?
MaryAnne Poline:
I think just don't be afraid of the word heart failure, important to mention or include, I think. Just don't be afraid of the word heart failure. You know, it's just another disease that can be managed.
Dr. Junpaparp:
Yeah that's right. I think I could not agree more with that. I mean, and last but not least, we like patient to thrive, but not just to live, but to thrive. So even though you have heart failure, it doesn't mean that your heart gonna fail further you know, we can stabilize the way it is or we can make it improving. If you take medicine right, do the best you can. With the lifestyle changes, things can get better.
Cami Smith:
Yeah, I love that. I think that's a great, great place to end. Thank you, guys, so much. I appreciate your insight and then also, ken, you being willing to share your experience.
Ken Mueller:
You're welcome.
Cami Smith:
And thank you all for joining us on and so Much More.
