When I worked for the Federal government, we often had to give briefings about our mission to new employees, congressional staffers, new administration members, etc. The title of these briefings always seemed to end with “101” which meant that the audience was getting a quick and overview of things they needed to know quickly.
When you enter the land of heart failure, for most if not all of us it is uncharted territory. So it might be helpful if your medical team could provide a version of Heart Failure 101 so that you know what steps you can take, and resources you can use, to be as healthy as possible. While you talk about your symptoms and treatment during each appointment, I think most people are like me and have a lot of questions about why you can’t eat certain things, or about measures you can implement to modify your health lifestyle, or about how you can deal with the increased anxiety you are starting to feel, etc.
Getting answers to these questions and then asking other logical questions that may result from each answer is time consuming. Plus while your doctors and nurses have a wealth of knowledge, some of your questions pertain to specialties that other job professionals may be better able to explain and to help you chart out plans of action.
For Heart Failure 101 to be successful, it should also refer you to people who can advise on issues that are critical to your heart health. I suspect that insurance may not cover some of these advisers. But if you have questions about how to better manage your condition to achieve a healthy heart benefit, it may be worth paying the money for one or two consultations. So what follows is a discussion of the type of specialists/resources that I think can help new heart failure patients learn how to best manage this baffling and exhausting condition:
Referral to a nutritionist who can help you figure out what foods you need to eat more of or stay away from. I am fortunate because my doctor’s office is at a Heart and Vascular Institute of a hospital, and there is a nutritionist on staff who patients can consult. She has been a godsend, and doesn’t mind how many questions I send her way.
Here are the types of issues a nutritionist can help you learn about and manage. If you have heart failure, you will likely be restricted in the amount of sodium you can eat. When it comes to potassium, depending on whether you take diuretics that leach potassium from your system or take those that are potassium sparing (along with other potassium retaining drugs), you might be asked to either increase or limit potassium. The nutritionist will look at the blood tests that are performed to monitor your heart condition and determine what is best for you to add to, or reduce from, your diet. I noticed that the blood tests also test for other substances in your body (for example, magnesium). So I supposed it is possible that at some point, the level of these elements might become of interest to your doctor and you might need a nutritionist’s guidance.
One thing my heart failure doctor reminded me of recently is that heart failure is a wasting disease, and they have to be sensitive to signs of malnutrition. He brought this to my attention after a 3 pound weight loss in four days at the time that I had my last heart catheterization. But he agreed with me that I did not look malnourished at this point, and I think I was probably dehydrated, especially as the cath showed that not was I not retaining fluid, I was extremely dry. So after doing some tests to make sure my heart could tolerate extra fluid, he told me that I could add some water and sodium to my diet. But he also wanted me to concentrate on getting more protein. So he told me consult the nutritionist, which I have done several times now.
Each time we talk, she asks what my typical diet was for the day. Based on what I said, she made some suggestions about how many more extra servings of protein I should get each day and made some suggestions which I have incorporated. She also was fine with the amounts of sodium and water I was taking in (as was the doctor). The nutritionist had some lists of foods that have low potassium to help me enforce my potassium restriction. I found that these came in handy during my recent cruise.
As you can see, the amount of intake of the various items is important, and they are usually calculated in grams or milligrams. Since it is very important that you keep track of number of grams/milligrams you get each day (as well as fluid ounces), you need to keep a good record so you will know when you are close to your daily goal. The nutritionist can probably recommend and app that tracks these numbers, as well as calories.
The tracker will likely have a bar code scanner so that all you have to do is to scan the bar code on the product and one serving is automatically added to your record for the day. If you eat more or less than one serving, you can reflect that once the bar code is scanned in and the app will adjust the amount of milligrams, etc. accordingly. Of course, there is an issue if the product’s label gives only percentages of the RDA rather than the amount of milligrams. In this case, you will need to ask the nutritionist for advice on what the daily amount of milligrams is for healthy people, and then you can do the math on how many milligrams are the equivalent of the RDA percentage. One pitfall I have found with the scanner is that sometimes what the label says and what the scanned version shows on my iPhone are inconsistent or elements are missing. When that happens, I enter the information manually.
While eating healthy is crucial, another healthy habit that I see listed on heart health websites and in my Entresto support materials is to stay physically active. I have been a regular exerciser since my late 20s, so no one needs to tell me the benefits of exercise. But unfortunately, heart failure has made it difficult if not impossible for me to perform my favorite activity of running. I also felt that I needed some advice about what exercises I could do that would be the most beneficial to my heart.
I doubt that your doctor’s office has an exercise trainer on staff because as far as I know mine does not. But you can start out by telling the doctor the type of exercise equipment you have access to, and whether that exercise equipment is okay for you to use. So for example, we have elliptical trainers, bikes and treadmills in the fitness room where I live and they are okay for me to use. But the doctor has warned me to use free weights rather than weight machines. This is fine with me because I think that weight machines are often problematic because people do not know how to use them properly and often strain muscles. But even though I can use free weights, I need to be mindful of the weight restriction that the doctor told me to observe, as exceeding his guidance could wreak havoc on my implanted cardioverter device (otherwise known as my combination pacemaker/defibrillator).
If you don’t have a good routine, or you want to change it up with some new moves, also consult with your doctor. For example, my doctor told me that resistance exercises would be good for me. But I have no clue what exercises fall into that category, which ones are the best, and which won’t strain my heart.
So on a few occasions, I have purchased sessions with a personal trainer to find some exercises that I can do. I let them know that I have heart failure and what restrictions the doctor has set. Then we take it from there. Every time I switch up my routine a bit, I end up feeling even better physically. So whatever fee I pay is worth it. But I also check back in with the doctor just to make sure that there are no heart concerns generated by the new routine.
Regardless of how healthy your diet and physical activity is, I would be amazed if as a heart failure patient you have not at some points experienced anxiety pangs. If you haven’t had anxiety from say, wondering if your heart beat would ever be so erratic that it might cause arrest, well please tell me what your secret is. Because I think the unknown of what unpredictable things our hearts might do next strike fear in the hearts of most of us.
If your anxiety pangs become frequent and prolonged, they might turn into an anxiety disorder that might benefit from some short or long term therapy. So for example, I saw a therapist for a few years until I started to get the OCD fueled heart anxiety under control. This is another specialist that I doubt is on your doctor’s staff. But they may be able to refer you to someone. Or, in my case I talked to my minister at the time and he referred me to a good therapist. If you do see a therapist, it is very important that you find a therapist who is empathetic, has a number of resources to help get to the root of your anxiety, and who speaks in a language you can understand. Having someone with a good balance and sense of humor, I think, is also critical. Your insurance should cover a good portion of the fee.
The next resource is one that can benefit not only you but any family/friend caregivers who are assisting you. As wearing as it is to have heart failure, it is also wearing to be the person who takes care of the patient, or helps them make major decisions. So support groups might be helpful for both the patient and the caregiver. Your doctor might know of some relevant support groups, and the local hospitals where your procedures are performed might also be a good source to find these groups.
As for your prescriptions, the doctors will give you instructions as to how often to take them, and the pill bottles will tell you whether they make you drowsy or whether you need to take them with food, etc. But there are other things that you might need to be sensitive to – like whether you are taking supplements that might interfere with the drugs or whether there are certain foods you should avoid. If your doctor or nurse is not available when you have these questions, you can also check with your pharmacists. I would of course always circle back with your doctor with the advice you obtained just to make sure you and the doctor are on the same page and he/she does not have any concerns about the advice you were given.
Not to say that the pharmacist is wrong, but that he or she may not have the full picture of your health because they don’t have access to blood work or other test results.
So my parting advice is to do all you can to navigate the basics of Heart Failure 101. It may help you avoid needing Heart Failure 911.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.