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.
First, I take a class of drugs known as beta blockers. The purpose of a beta blocker is to block the production of adrenaline in your body. This is because too much adrenaline can damage the heart. If you were like me in my younger days, I thrived on adrenaline! Isn't adrenaline the substance that over time has helped us to survive because it inspires a fight or flight reaction when we are in danger?
Needless to say, beta blockers are a necessary treatment for congestive heart failure. According to the Mayo Clinic website: "Beta blockers, also known as beta-adrenergic blocking agents, are medications that reduce your blood pressure. Beta blockers work by blocking the effects of the hormone epinephrine, also known as adrenaline. Beta blockers cause your heart to beat more slowly and with less force, which lowers blood pressure. Beta blockers also help open up your veins and arteries to improve blood flow."
I have no doubt that beta blockers work well for some heart patients. But here is the thing. Adrenaline has been fueling my energy surges for oh, about 30 years prior to heart failure. I must have some of the most fit adrenaline that exists, because even now, when I feel either that a task has to be done, or if I perceive a threat, my adrenaline immediately sprints forward. I don’t see that a “blocker” has the sufficient time or speed to catch up with my adrenaline. What happens is that even though I no longer have the physical energy to sprint forward at the same rate as the adrenaline, my anxiety still has tons of energy. My anxiety kicks me into fight or flight mode and the anxiety runs hand in hand with my adrenaline!
Accordingly, I have decided that the pharmaceutical industry needs to develop a new class of drugs. I am going to call this new class beta snipers. Kind of like my Entresto, the beta sniper would have two substances. It would be armed with tranquilizing darts and aim straight for the adrenaline that is rushing forward. Once the dart hits the adrenaline, I can see that it would go into relaxation mode and maybe even sleep for a while.
That would give time for the second beta sniper substance to respond by moving in front of the sleepy, slow adrenaline and block it from kicking my active brain and anxiety into gear. I feel calmer just thinking about the possibility of this new wonder drug! Of course, if I bring this up with my doctors, they will give me this look that basically says: "She should be writing sci fi novels. Because that is really where this idea belongs! In a book or on the movie screen – but not in the field of cardiology! Plus, using her imagination in a productive, creative way would channel that pesky adrenaline so it does no further damage to her heart."
Maybe they are right – except channeling my imagination into the blog and other sources has not yet rehabilitated, blocked or eliminated my adrenaline. Instead my anxiety fuels my ability to think of even more inventive yet irritating questions to ask my heart doctors!
The next suggestion falls into the category of making sure the brand name of the drug is clear and correctly categorizes potential users. What do I mean by this? Well as you may recall, there are certain drugs a heart patient needs to avoid, such as non-steroidal inflammatory drugs (also known as NSAIDS) and certain cold medications like decongestants. So what is a girl to do when she has a really bad cold or upper respiratory infection.
Well happily, Tylenol (brand name or generic) has been approved for me to take for pain and fever. But what do I do to clear out the congestion – which can be a very real problem due to my continuous allergies, sinus issues and deviated septum? Before I know it the congestion has spread so that I have a stuffy nose, a scratchy or sore throat, and aches in my sinus cavities and in my ears.
The drug that was recommended for me by my medical team was Coricidin HBP which has various formulas such as cough and cold, chest congestion and flu. What does the HBP in the drug’s name mean? It stands for high blood pressure. This means that it is an okay medication to take that won’t raise the blood pressure of heart patients, which seems to be a typical symptom for heart patients. But if you have read previous posts you may have picked up on the fact that when it comes to heart symptoms, I am atypical. I fall into a much smaller class of patients who have low blood pressure.
Unfortunately, a number of the drugs that are prescribed to heart failure patients because they treat a litany of heart symptoms (including high blood pressure) tend to lower my blood pressure even more
But if you have read previous posts, you also understand that I tend to do exactly what the doctors and nurses tell me to do. So when I have a cold or upper respiratory infection with tons of congestion, I will go to the drugstore and search for Coricidin HBP.
When I go to purchase the product at the register, I expect a warning beep to sound and alert the clerk. This would be something similar to what happens when you buy alcohol and the clerk is alerted to check your ID for your age. (Although I have to admit that they never ask for my driver’s license because it is pretty clear that I passed the age of majority quite a few years ago).
The alert I fear is someone challenging me with the question – what was your blood pressure reading this morning? Or maybe make me go to one of those blood pressure machines that are adjacent to the pharmacy aisle to make sure that I am well qualified to purchase a product that is made for people with “High Blood Pressure.” Obviously, this has never happened, but I do feel quite foolish taking the medication home. I put out of my mind the worry that it might lower my blood pressure even further because I just want the stupid congestion to disappear from my head.
So, I offer a simple tweak. Why can’t the package say: For heart patients, especially those with high blood pressure. This would be sufficient to encompass all heart patients, and not exclude those of us who have the blood pressure of a zombie but still need something other than a traditional decongestant.
The final suggestion I have relates to the product information printout that you receive from the pharmacist, or the package insert, or both. I recently took an antibiotic when I had bronchitis. I was miserable from long bouts of coughing for a few days, and I was not operating on all cylinders. I forgot to tell my family doctor “oh, by the way, a few months ago, we discovered I had a low level of premature ventricular contractions.”
By the time I picked up the antibiotic that was prescribed I was beyond miserable. I looked briefly at the product information I got from the pharmacy. It had a very long paragraph of side effects listed. The first sentence related to stomach problems that the antibiotic could cause. The next few sentences were standard verbiage that I see in every prescription I have – many people don’t have serious side effects. The doctor is prescribing this because the benefit is greater than the risk of side effects. By that point, I just wanted the cough to disappear and I took the first dose. It wasn’t till I had rested for a while that I looked more carefully at the product information. Listed further down on the side effects were irregular heartbeats – which is essentially what a PVC is.
Then I opened the patient insert, which is basically the size of the world atlas folded into a square the size of a matchbook. When you unfold it, the first thing you notice is that you need a magnifying glass to be able to even read the information that is displayed. The second thing you notice is that there is a wealth of charts, each giving the various conditions that the antibiotic can treat and the dosage based on either the weight or age of the patient. I lost count of all the conditions listed, but I can tell you that I am pretty sure that I only was being treated for one of the conditions. Also, the dosage that related to my specific condition had been placed on a label by the pharmacist, as directed by my doctor. So why do I need to read about every other condition known to man that might be treated by this drug? Deleting this could free up important space and make the insert more user friendly.
Then I had to search through the paragraphs to see if there is anything directed at my particular heart condition. I finally found a paragraph discussing what to tell your doctor before you take the antibiotic and it included whether or not you have irregular heartbeats. Swell – now what? Well, I got in touch with my heart doctor for advice on how to proceed, as well as a suggestion for a better antibiotic to take going forward. Happily, I do not have the irregular heartbeat issue that is most at risk for an adverse reaction with this particular antibiotic. My irregular beats pose a low risk, which is mitigated because I have a defibrillator. But still, you’d rather always be in the no risk category if possible.
What would I tell the people who put out the various product information documents? While it’s nice to know all the side effects, I think they should be displayed in order of those that may threaten your life first, even if they are less common and then the ones that make you feel bad but probably won’t kill you. I also think there should be in bold letters a category that says – these people need to advise their doctor up front – and then include the particular conditions that could land you in the hospital or in your grave. Just saying – when there is a lot of verbiage to wade through you need something that quickly catches your attention.
I know that I probably should have been more diligent in telling my doctor about recent discovery of the irregular heart beats. In my defense I was feeling pretty awful from a persistent heavy cough that made me feel miserable and strained my lower back. I wasn’t sleeping well, so I wasn’t on my A game. But perhaps I should update the card I keep in my purse so that it has not only the most current information on the drugs I’m taking, but also current information on new things that have occurred since we last met.
Finally, you have probably detected the fact that a lot of what I have written here is tongue in cheek. It’s my way of dealing with serious issues. I keep trying to find ways not to become anxious over my condition, or to gently mock myself and the condition when I fall into an anxiety frenzy. It helps most of the time. But please note that I do take my health very seriously and I respect and admire my medical team and the people who make the devices and medications that have made my life bearable. So hopefully my humor does not offend but lets all know that I’m well enough to find something to laugh about and to live a productive life.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.