Heart condition means adjusting to the limits of a 'new normal'

[00:00:00] Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. The Heart Failure Society of America estimates that nearly 6 1/2 million Americans over age 20 have heart failure. Today we'll learn about this condition with nurse Natasha Zmitrowitz - she's the heart failure program coordinator at Upstate University Hospital -- as well as Ashley Greiner, a patient who was diagnosed with heart failure seven years ago. Welcome to "The Informed Patient," both of you.

[00:00:37] Natasha Zmitrowitz, RN: Thank you.

[00:00:39] Ashley Greiner: Hi. Thank you.

[00:00:40] Host Amber Smith: Before we get too far into this, I'd like to go over some terminology. Heart failure doesn't mean that the heart has stopped, is that right, nurse Zmitrowitz?

[00:00:49] Natasha Zmitrowitz, RN: Yep, that's right. Basically, heart failure means that something's wrong with your pump. So, essentially your heart is a pump that pushes blood through your body to where it needs to go. And when you have heart failure, something is wrong with that pump, so you're not getting adequate blood flow to the organs that you need it to.

[00:01:06] Host Amber Smith: So what is the difference between left heart failure, right heart failure, and I've heard of congestive heart failure.

[00:01:13] Natasha Zmitrowitz, RN: Good question. We don't use the word congestive heart failure anymore. Now that we have more definitive criteria for guidelines and medications that help reduce admission and increase length of life, we focus those medications on two main types of heart failure, not left versus right, but what we call systolic heart failure or diastolic heart failure.

So essentially that means there's either something wrong with the squeeze of your heart or something wrong with the relaxing-and-filling-up-with-blood of your heart. So when we look at those, we talk about a number called ejection fraction, which is something that heart failure patients should know.

Your ejection fraction is the percentage of blood that gets squeezed out of your heart with every heartbeat. When you have a normal ejection fraction, it is 50% to 65% or so. When we talk about a reduced ejection fraction, we're looking at an ejection fraction of about 40% or lower. And that is how we decide what type of heart failure you have. And the terms are heart failure with reduced ejection fraction or heart failure with preserved ejection fraction. And both of those types of heart failure have a little bit of a different way of treating them.

[00:02:34] Host Amber Smith: Do we know what causes heart failure? Is this something that just happens as we age, our hearts kind of give out? Or does this develop in younger people?

[00:02:44] Natasha Zmitrowitz, RN: Well, certainly it can develop as you age. You're more at risk, the older you are because the longer your heart works, it's like a muscle. So I tell my patients, you know, if you're working out your bicep and lifting weights, that muscle's going to get bigger. It's going to get thicker. Same thing with your heart. And when that happens, it doesn't relax as good.

So typically in our elderly population, we'll see heart failure with preserved ejection fraction, and there's other things that cause heart failure. One of the biggest things is coronary artery disease, or the junking up of the vessels inside of your heart that deliver blood. Another issue that can cause heart failure iswhat we call the silent killer. Hypertension, or high blood pressure, can also lead to heart failure.

We typically like to get a really good history on patients because certainly family history matters, genetics matter. If you've been introduced at all to chemotherapies, a lot of chemotherapies, some for breast cancer, can even cause heart failure eight, nine years down the line after stopping treatment. There's other disease processes that can cause heart failure, thyroid disorders, rheumatologic disorders.

So there's a lot of things, including a addiction to cocaine, amphetamine, things like that, that basically make your heart run a marathon. So that can certainly cause heart failure as well.

[00:04:04] Host Amber Smith: So it sounds like there are things that would increase someone's chance of developing heart failure.

[00:04:09] Natasha Zmitrowitz, RN: Absolutely.

[00:04:11] Host Amber Smith: How do people typically learn that they have heart failure?

[00:04:16] Natasha Zmitrowitz, RN: Typically it's when they start to experience symptoms and they go to a doctor or come into the hospital feeling short of breath, maybe their legs are swollen, belly's swollen. They can't eat really well because their belly's so swollen. They have trouble sleeping. And when I say have trouble sleeping, when they lay down to go to sleep at night, it increases their difficulty with breathing, and they have to prop themselves up with pillows. So any of those changes, if there's a change, people will sometimes seek out medical attention. And we do what's called an echocardiogram, or an ultrasound of the heart, and that shows us the pumping ability of the heart.

[00:04:53] Host Amber Smith: Well, let me ask Ms. Greiner to talk about how she learned that she had heart failure. This was seven years ago, right?

[00:05:02] Ashley Greiner: Yes. I was 35 at the time. I was a practicing attorney. I was pretty busy. I didn't have any kind of overly, like, scary symptoms. I kind of had little things happening to me. And, kind of like most women do, I explained them away. I thought I was getting older, more out of shape. I was getting a little bit out of breath. I was slowly putting on weight, mostly in my abdominal area.

As time went on, there were specifically kind of two days in a row where, like Natasha said, I had a really hard time laying flat to go to sleep, and I started retaining fluid in my lower extremities. And I went to work the whole day, and it continued for two days in a row. So I actually drove myself to Upstate (University) Hospital, and I was actually diagnosed in less than an hour with a proBNP blood test and an echocardiogram.

At that time, I did not realize how sick I was. My ejection fraction was 5%, and I was told if I hadn't come in, I probably would not have made it more than a few days. I was diagnosed, at that time, they just said congestive heart failure, but it was systolic heart failure. And I was transferred to the cardiac ICU (intensive care unit,) and ultimately I was transferred to an advanced heart failure clinic in New York City, where I was for an extended period of time. And I've continued to treat there, as well as locally at Upstate, for the past seven years.

[00:06:42] Host Amber Smith: Did this diagnosis come as a complete shock to you or did you, have you ever had heart issues, or does your family history include heart failure?

[00:06:52] Ashley Greiner: It was a complete shock. I actually have an idiopathic diagnosis, which means no known cause that the doctors could actually contribute it to. I have never had high blood pressure. I have no coronary artery disease. Still to this day, I have no blockages. I've never had a heart attack. I have no family history of heart failure.

There are some heart issues in my family, but I have not, I don't have any cholesterol issues, never had blood pressure issues. I was diagnosed about four years, four to five years prior, with Hashimoto's thyroiditis, which is a thyroid autoimmune disease. But that was always well managed, so they did not really think that was a contributing factor. And they couldn't really give a definitive diagnosis of anything like a viral cardiomyopathy because at the time that I was diagnosed, I didn't have a virus.

So, you know, those all could have been possibilities, but there was no way for them to pinpoint exactly what caused my heart failure.

[00:07:49] Host Amber Smith: When you were hospitalized initially, how long were you hospitalized before you were stable enough to return to your home, and you live here in Elbridge, right?

[00:08:01] Ashley Greiner: Yes. I live locally. At the time I was living in Kirkville Bridgeport area. And locally I was in the hospital for a couple weeks, and then I was transferred to New York City for a couple more weeks.

It's actually very hazy. I don't remember. I mean, I was in the hospital in the ICU for quite a long time, until I was stable. I was discharged from -- initially I was not going to leave the hospital without a heart transplant because my ejection fraction was so low. Luckily, because I was able to go to an advanced heart failure clinic with just more resources, I was able to leave the hospital with an external defibrillator called the Zoll LifeVest, and monitor my progress for three months on medication to see if my ejection fraction improved to over 35%, which is where they like you to be, to not get a pacemaker or defibrillator.

Unfortunately, mine only went up to 10%. So I was implanted with a pacemaker defibrillator about three months after my diagno, well, about four or five months after my diagnosis. And then I still continued to have a lot of problems, and I spent my whole first year basically in and out of the hospital because of fluid and edema related issues.

After that first year, I eventually had the CardioMEMS implant, which is an implant that sits in your pulmonary artery and measures your pulmonary arterial pressures. And it remotely monitors you so that your doctors can basically see if you're going to be retaining fluid or if you're dehydrated, and essentially keep you out of the hospital and adjust your medications remotely.

And since then, I've basically only been hospitalized two or three times over the past five years for fluid related issues.

[00:09:50] Host Amber Smith: So, aside from the times that you've had to be hospitalized, what kind of a daily impact does heart failure have on your life? Are you restricted in things that you can do because of it?

[00:10:04] Ashley Greiner: Yeah, absolutely. When I was first diagnosed, after my initial time in the hospital, I did go back to work. My company at the time was amazing. I am so thankful. But for two years trying to manage this disease and go back to work -- and I have to mention, it's different for everyone -- but trying to go back to work in my field was very difficult.

And even though I had a great company and my colleagues were amazing, it was a very stressful field. And the stress, along with the time, and it wasn't fair to me or the company with the amount of time I was missing going in and out of the hospital, and with doctor's appointments and whatnot, I had to stop working as an attorney.

So that was a huge change in my life. Obviously, you go to law school for a very long time. I had to, at the age of 38, move back in with my parents, not how I envisioned my life. I had to go out on disability. I was very active. I had ran a couple half marathons. I was still doing like fun zombie 5Ks with friends and traveling a lot. And at the beginning of my diagnosis, that was absolutely non-existent. I have now, over time, been able to resume traveling and kind of stuff like that. In the chronic illness world, it's coined "your new normal." You find your new normal. You find a new path. You find the things that you are able to do within the confines of your illness. And for me, that looks like I started becoming a patient advocate. I started an online heart failure patient and caregiver support group that has just under 3,500 members worldwide.

And I have to eat low sodium because of my heart failure, so I challenge myself with trying to make great low sodium like recipes and foods. I use this time to travel to be closer to my extended family. And as much as I don't want be a 42-year-old living with my parents, I have a great opportunity to spend so much time with them, which most people don't get. So I try to look at the positive side of everything.

[00:12:20] Host Amber Smith: How could a listener find the online support group that you mentioned?

[00:12:24] Ashley Greiner: It's actually through Facebook, and it's actually C H F Patient ampersand -- the & sign -- and Caregiver Support Group. And you just have to answer a few questions because we like to keep it just for patients and caregivers and their families. We don't like healthcare professionals. Sorry, Natasha. We like to keep it a safe space for everyone so they feel very comfortable to be open. But yeah, that's all they've got to do.

[00:12:50] Host Amber Smith: Well, nurse Zmitrowitz, once someone has been diagnosed with heart failure is there any way to reverse it?

[00:12:58] Natasha Zmitrowitz, RN: So certain heart failures can be reversed. One of those is what we call a takotsubo cardiomyopathy, or what we call stress-induced cardiomyopathy.

It can also happen in body stressful situations such as severe infection. We see it a lot of times in the ICU, or through surgery. So that is one that you can recover from.

I can say that there are some amazing medications out there today that can help improve your ejection fraction. When it comes to heart failure with a preserved ejection fraction, when you have that thickening of the heart muscle, that is typically something that we look more at symptom management for, because that can't be reversed. You can, however, in systolic heart failure or with a reduced ejection fraction, medications or devices such as special pacemakers that can help resync the heart back to beating correctly. Those can help recover your ejection fraction.

[00:13:59] Host Amber Smith: Are there other things that people can do to try to improve their ejection fraction? I'm thinking about exercise.

[00:14:06] Natasha Zmitrowitz, RN: Well, Ashley could probably tell you, as an insider about cardiac rehab. Unfortunately it's not available, or not covered by insurance for all heart failure patients. Typically you either have to have had a heart attack, a heart surgery, like an open heart surgery, or you have to have a reduced ejection fraction. But we do see a lot of benefits to cardiac rehab.

And Ashley, I don't know, are you thinking that cardiac rehab is helping?

[00:14:34] Ashley Greiner: Yeah. I actually, I have wanted to get in cardiac rehab numerous times over the past seven years, but like Natasha said, there's so many kind of rules. Either my ejection fraction was too low, or not low enough, because healing and your journey with heart failure is not linear. My ejection fraction has gone up. It's gone down. It's kind of been all over the place. And so, insurance won't cover it if you have, or you haven't had a hospitalization recently. So there's all these kind of parameters you have to meet.

And so I recently, finally was approved for cardiac rehab. And I can tell you my ejection fraction hasn't gone up, but my ability and my stamina have increased. I don't feel as winded doing things. My, you know, I think the scale is called the "perceived rate of exertion" that you use. I'm able to do things, and I don't feel as like I'm exerting as much energy, which is really what I'm looking for because I know in my particular case, my heart failure's not going away. I'm nearing the part of my journey where I am getting closer to needing a transplant.

I was recently just evaluated for an L V A D, (left ventricular assist device,) which is a mechanical heart pump. So like, I am progressing in my journey, but I'm just looking for things to kind of be the healthiest I can be, the strongest I can be, like eating low sodium, exercising as much as possible, and kind of things like that.

But, yeah. I think cardiac rehab's a great tool because it teaches you how to listen to your body and exercise within the constraints that are healthy for your body and your heart.

[00:16:09] Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking to nurse Natasha Zmitrowitz -- she's the heart failure program coordinator at Upstate University Hospital -- and Ashley Greiner. She's a lawyer who was diagnosed seven years ago with heart failure, and she's telling us about what life is like living with heart failure.

You mentioned the low sodium diet, and I assume that's recommended for everyone that has heart failure, right?

[00:16:37] Ashley Greiner: Yeah. It's different for everyone. Correct me if I'm wrong, Natasha. You know, everyone needs sodium to live.

[00:16:43] Natasha Zmitrowitz, RN: Yeah.

[00:16:43] Ashley Greiner: But I think most people eat too much sodium. And everyone has their own kind of baseline. I know when I started, you know, I'm a little bit of an overachiever and so when they said "under 2,000 milligrams," I went as low as possible, and that was detrimental to me.

I was in the hospital just as much for being too low with my sodium as some people are with not being low enough. So it's a delicate balance. Same with, a lot of us are put on fluid restrictions because our hearts aren't beating properly, and so we're not getting enough oxygenated blood to our organs, including your kidneys, which help filter out fluid. So that's why we start retaining fluid.

So if we control our sodium and we control our fluid intake, we can help minimize the work that our kidneys can't do. So, it's a delicate balance. I might be able to have 2,300 milligrams of sodium, which, that's really what I need, and I don't have a fluid restriction because I kind of know where I need to be at. Whereas someone else might need to only eat 1,300 milligrams of sodium and two liters of fluid a day.

So it really kind of takes some working with your doctor and watching your blood tests and stuff like that. But I find that just from what I see from my lovely, wonderful group members and other people I've encountered and met on my journey, and just for myself, too, that is like the hardest, I think one of the hardest hurdles to overcome because everything, even sweet things, are like packed full of sodium. Even your soda is full of sodium. It's just in everything. And so just trying to eat at home alone is so hard. Forget trying to go out to eat. That is its own hurdle in and of itself. So, yeah, I thinkthat is, that's a huge part of this journey.

[00:18:29] Host Amber Smith: Nurse Zmitrowitz, how often do people with heart failure see their cardiologists, typically?

[00:18:35] Natasha Zmitrowitz, RN: I would say it depends. Like Ashley said, this chronic illnesses up and down. When you come in at first, it takes a while to get stabilized. When it comes to the medications, the grouping of medications that are recommended by the American Heart Association, the Heart Failure Society of America, American College of Cardiology, they all have these recommendations of four main medications. And those medications have shown best outcomes when they're at their highest tolerated doses.

So for Ashley, if she's on a medication, say, called lisinopril, Ashley might only be able to tolerate 5 milligrams of that, where I might be able to tolerate 20. So as long as we get to our highest spot possible, that takes some time. These medications all affect blood pressure. They all affect kidney function. They all affect potassium levels. And we can usually only play around with one medication at a time to keep patients safe.

So at first you may be seeing your cardiologist every two weeks, especially at our heart failure clinic where we focus on the titration and up dosing of these medications. For patients who are very fluid overloaded and really struggling to keep that fluid down, we try to keep them out of the hospital at our heart failure clinic by using IV diuresis, getting the water off them through IV medications. And some of those patients will come twice a week. And then there's other patients who are doing great.

[00:20:00] Host Amber Smith: So it sounds like there's some careful monitoring of the medication, certainly. And Ms. Greiner talked about the sodium intake. Are there other things that people with heart failure have to keep track of that might give them clues whether things are improving or deteriorating?

[00:20:17] Natasha Zmitrowitz, RN: Sure. I think one of the biggest things is daily weights.

We want all our patients to weigh themselves in the morning after they first urinate. We don't want them counting what's in their bladder because that gives a false weight. But sometimes people will notice a weight gain before they even feel any type of symptom from overload. So weighing yourself every day is a really big thing.

And then documenting it. That way tomorrow, you don't have to worry about remembering what you weighed today. It's right there for you. We always tell our patients to look for a weight gain of 2 to 3 pounds in a day, that it would not be from food, that is definitely fluid.

But if you're writing it down and documenting it -- some patients may never gain two or three pounds in a day -- but if they're writing it down, they can catch a trend. They can see, "Hey, look, Wednesday, Thursday, Friday, I'm gaining a pound. Every single day. I might be heading into trouble. I need to call my doctor."

[00:21:09] Host Amber Smith: So it sounds like this is a disease, a chronic disease that can be managed, but it seems like it takes a lot of effort, really, on the patients and the providers to manage it.

[00:21:19] Natasha Zmitrowitz, RN: Absolutely. And you know here at Upstate we have a very large population that has a lot of social determinants of health and barriers with access to care, access to medical transportation. So we've tried to implement some things to remove some barriers. We now enroll our patients in what we call a medication adherence packaging program, through our outpatient pharmacy. That is, if they're in hospital, they get their medicine delivered by "Meds to Beds," which means they get their meds right at the bedside before they leave. They don't have to go to the pharmacy on the way home. And then also, within five to seven days you have a pharmacist calling you saying, "Hey, how's your medication going? How are you feeling from it," working on making sure that they're getting their refills.

If they can't get to the pharmacy, they're making sure they're getting them delivered. If there's a change and they can't get the medication, it's getting couriered to them. So that's been a really wonderful thing to help with some of the barriers.

We also have a grant that has been funded by Upstate Foundation, which has done awesome things for our patients who have trouble getting to foods that have low sodium, getting access to those foods. In the city of Syracuse, 40% is a food desert, so a lot of our patients are getting their food from corner stores and gas stations and food banks, and really all of those foods are loaded, loaded with sodium. So we have been able to develop a program with a company called Off the Muck, located in Cannastota, New York. They offer a low cost box of fresh fruits and vegetables to our patients, and the Upstate Foundation has allowed us to purchase a box per patient. And they get those delivered post discharge. So that's been helping.

You know, you get out of the hospital. The last thing you want to do is go to the store and go shopping. You probably want to get in your own bed. You want to relax. You know you want to sleep a little bit because you don't get a lot of sleep in the hospital. So that helps alleviate some of the stress and transition from going back to home.

[00:23:19] Host Amber Smith: Well, I want to thank both of you for making time for this interview. I appreciate it.

[00:23:24] Natasha Zmitrowitz, RN: Thank you.

[00:23:25] Host Amber Smith: My guests have been nurse Natasha Zmitrowitz -- she's the heart failure program coordinator at Upstate University Hospital -- and Ashley Greiner. She's a lawyer who was diagnosed seven years ago with heart failure. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/informed. If you enjoyed this episode, please rate and review "The Informed Patient" podcast on Spotify, Apple, YouTube, or wherever you're tuning in. This is your host, Amber Smith, thanking you for listening.