As a chronic congestive heart failure patient, it seems to me that I am taking a lot of medication. My nurses assure me that there are other patients who take even more, so I guess I should be grateful that I do not have even additional pills to swallow
have become familiar with a number of drugs in the last six years. I have also reviewed a good variety of product packages, product information documents and patient inserts. So I have some suggestions to perhaps help the pharmaceutical industry develop additional drugs, revisit medication names, and add more clarity to the patient information we need to review before we put a pill into our bodies.
I have mentioned many times that I love the new heart failure drug Entresto. It is a great medication that is making me feel better, and I am enrolled in the manufacturer’s Central Support Program. The program pays part of my co-pay and provides helpful information about managing heart failure.
About a month ago, the program sent me little notebook entitled “My Daily Journal of Health, Heart and Hope.” The letter that came with the journal pointed out that while heart failure is a physical condition, “managing it can also take a toll on you emotionally.” I can verify that this is true. My well-being tanked when I was first diagnosed with heart failure. I did not know what this condition was, it had a stupid and misleading name, and I felt awful. I didn’t have the journal six years ago. But I did have personal support network of family members, friends, a church community, a talented medical team and a penchant for discipline and routine.
I have mentioned the drug Entresto in a number of posts – everything from describing the commercials that broadcast the existence and success of this new heart failure drug to posts describing my experience on the drug, to include an increase in potassium levels. It is partly the success of the drug that has made me commit to managing the dietary changes to control the potassium issues (with maybe just a minimal amount of grumbling). But it is also this wonderful support program that the drug company Novartis has established to help heart failure patients who are on Entresto.
So what is Entresto? According to the Novartis promotional materials, “ENTRESTO is for people with a certain type of chronic heart failure where the heart is enlarged and too weak to pump the way it should. ENTRESTO is the first and only FDA-approved medicine of its kind that can help improve your heart's ability to pump blood to the body. Individual results may vary.” I have an enlarged heart, and for years my echocardiograms have established that my heart is not pumping effectively and the ejection fraction is very low. So Entresto seems tailor made for me.
I spend a good portion of my day reading, whether it be reading the newspaper, the magazines I receive, on-line sources for my blog posts, or just reading mystery novels for fun. The thing I love about reading is that words matter. They are powerful things, and can convey a wealth of information. We must evaluate carefully the information we read that pertains to health, and we must not jump to hasty conclusions.
What do I mean by this? Whenever you read anything, it is important that you avoid the tendency to just scan it to glean the meaning that you want, rather than to comprehend what the author is trying to tell you. This is a mistake I made recently about the news of a health study. I saw in the article the solution that I wanted my medical providers to endorse, rather than the actual information that was presented.
Why does it always seem that something becomes more enticing when you can’t have it? I must admit that other than liking to work out in the fitness center and attempting yoga, I have never been much of an athlete. I never had dreams of competing in an Olympic activity (unless they have added an event for clothes shopping). So why was I disappointed in February when I learned that I might be banned from ever competing in some Olympic sports?
Just what is the basis of the potential ban you ask? Is there a lifetime ban on clumsy people? Does my heart device give me an unfair advantage? Close but it is not the device that gives me an edge. No, those blasted beta blockers are the culprit.
I can hear you now: NSAID? Is that the new rapper who is dating the star of that new Netflix series? No, NSAID is an acronym for the term non-steroidal anti-inflammatory drug. Still not following me?
Well here is what the Cleveland clinic says about NSAIDS. These drugs effectively reduce inflammation (swelling) and relieve pain. Inflammation is the body's way of protecting itself after irritation or an injury. Signs of inflammation include redness, warmth, swelling, and pain.
If you look at my medicine closet, in many other areas of my condo, or in my purse, you will see that I will likely not run out of bandaids, liquid bandaids, sterile gauze, or medical tape for a very long time. Why? Am I thinking about opening up my own emergency aid clinic? Did I happen to come upon a good sale on first aid products at my pharmacy? The answer to both questions is no. The reason for my well stocked medicine closet is that since the dawn of cardiomyopathy in my life, I now seem to bleed when I hear the word cut.
You might think that this is an odd statement. In many posts I have told you that my damaged heart cannot seem to pump blood efficiently. So if it can’t pump blood efficiently, why are my cuts spurting red blood like the geyser Old Faithful?
One of the things that I have learned to accept, even though I am not thrilled with it, is that it will take a miracle for me to lose the feeling of lingering fatigue caused by my heart failure. Don’t misunderstand, there are some points during the day where I feel energetic, and I am learning to use those times to my best advantage.
But there are also times when I just feel like something is draining every drop of energy out of my body. For someone who was always known as being “perky”, a energetic, lively and even feisty, this is one of the most significant impacts of heart failure.
One of the downsides of (1) getting older and (2) having a chronic condition is that you have to take a lot of medications. Depending on your health plan, some of the drugs can be costly. Even if the prices are reasonable, it can be time-consuming to keep track of ordering refills before they run out. I am also finding that sometimes I have to play Nancy Drew to get to the bottom of prescription mysteries.
It helps to establish a good rapport with the pharmacist at your local pharmacy and with the customer service representatives at your mail order pharmacy. Trust me, you may need to contact them if something goes awry in in the mail order process. I always keep in mind that whatever the issue is, the person answering the customer service number did not cause the issue. In other words, stay cool and pleasant with that person.
In January 2016, I was sure that I was beginning a period of heart health progress. I had a better echocardiogram result, I was exercising at a really good pace, and my weight was starting to trend downward. It seemed like everything was right with the world!
Unfortunately, February brought some disconcerting episodes. There were a number of times when I was exercising and had to slow down for a short time because I was experiencing shortness of breath. I also began to notice that my weight was starting to creep upward just a bit. I was starting to feel more fatigue than I had in a while and some episodes of dizziness in the morning. When this first started to happen, I had just completed a colonoscopy. So I thought it was possible that the preparation required, and the procedure itself, may have caused a temporary setback. I assumed I would get back to normal soon.
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.