Locked and Loaded: Making Peace with CVD Medication
Taking medication is one of the first worries I have found when talking to people with heart disease. One of my old friends told me that she would never have mechanical heart valves because she wanted to avoid the need to take warfarin for the rest of her life. Granted, this was not an option that was given to me, but at the time of this discussion, about ten years ago, it surprised me how deeply she was against the notion of mechanical heart valves simply because of the medication and the restraint it would put on her ability to travel. However, it should be noted that we were having this discussion over a glass of wine in Shenzhen, China, where we were both gainfully employed despite our respective intense cardiovascular medical histories. So, technically, it was not the medicine that held us back, thus far in our lives… yet still the need for medications hung like a shadow over both of us, like the concept of increased medication directly meant foreshortened lifespan. This raised a particular question that has been living rent-free in the back of my mind for a decade, a question I personally did not want to research for a long time for fear of not liking the answer: with heart disease, does the increased medication necessarily mean someone is in worse health? And what is the source of fear of medication, especially regarding cardiovascular disease (CVD)?
Considering how I recently discovered that I could breathe better than I have in four years as a result of multiple medical interventions, and maybe even better than I have in at least a decade, simply by adding another medication to my CVD repertoire, this experience renewed my interest in this question.
So, let's find out.
When someone first hears they have cardiovascular disease (CVD), it often is accompanied by thoughts of fear and apprehension, for a good reason; however, in my experience, having taken medications like warfarin, among others, since childhood, I offer a different perspective. I consider them to be weapons in my arsenal. Things I use for self-defense are a fact of life, but they are essential to maintaining my well-being.
Granted, I remember first learning how to take them while sitting cross-legged on the floor of my bedroom in my Lion King nightgown as a child. I remember the pink bows on the ceiling and two nurses sitting across from me when I had trouble swallowing the pills they gave me, especially with the feeding tube still stuck in my nose.
As one can imagine, pill-taking was a difficult, but necessary skill I had to master, or I could never leave the hospital. So, I eventually mastered it over the course of several tubes of mini M&M's and a lot of choking and coughing, but after a night of practice, I got the hang of it.
Ironically, this particular set of skills came in handy as I got older. I had my first shots with friends at 18 while studying abroad in China. I ended up shocking my classmates, who were all so sure I would choke, being the ultra-naive "little Christian schoolgirl" they designated me to be. But, I was able to take shot after shot without a problem… although I would not recommend doing that because alcohol and warfarin do not mix well. Regardless, it was a fun night.
However, aside from warfarin, new medications have largely consisted of vitamins and a few asthmatic medications and Jardiance, but relatively few specifically dedicated to heart-failure-prevention purposes. At least that has been my experience up til this point, when recently I was prescribed a new type of medicine I had been trying to avoid for most of my life: diuretics.
To be honest, I'm not overly sure what specifically frightened me about this medicine. Although I could hazard a guess… Perhaps it was my introduction to them as a concept. I was threatened with needing to take them years ago, when such news arrived along with accusations of heart failure and how it was all caused by my own folly, which it turned out was caused by how other people did not believe me when I told them in the first place. So, it was genuinely an unpleasant experience and one I did not cause.
Since then, I had to take the medication twice before, and I felt absolutely miserable with restrictions on how much water I could drink and how my diet had to change… it was an all-around unpleasant experience.
And, the thought occurred to me… maybe that is the source of most people's fear of medication when it comes to CVD. It is not seen as a tool as much as a signal. A sign of an impending end and another whack hacking away at one's health, identity, and autonomy.
So, when I got the "heart failure" alert from my pacemaker (again!) that I was retaining fluid the day before this last trip to Germany, I was less than thrilled, but finally relented when my doctor gave me the medication on an "as needed" basis. And, as you can imagine, I was far from thrilled because, if past experiences were to serve as any form of standard, taking this new particular type of medication would undoubtedly "throw off my groove."
It should be noted that nonadherence to taking heart medication is a particularly common and dangerous concern. The article, Medication Adherence In Cardiovascular Disease by Steven Baroletti and Heather Dell'Orfano notes how, "nonadherence to medications has been documented to occur in >60% of cardiovascular patients. Self-reported adherence to cardiovascular medications in patients who have coronary artery disease is <40% for the combination of aspirin, β-blocker, and a lipid-lowering agent in both isolated and long-term follow-up surveys" (Baroletti and Dell'Orfano, 2010). This is particularly important, especially after the immediate discharge period from the hospital, because that is the transition phase and a "time of high risk for nonadherence. Nearly 1 in 4 patients is partially or completely nonadherent in filling prescriptions after discharge. Of the patients who are initially adherent, up to 50% will discontinue antihypertensive medications within 6 to 12 months, and only ≈40% continue statin medications for 2 years after hospitalization for acute coronary syndrome" (Baroletti and Dell'Orfano, 2010). However, not adhering to one's medication regimen is far from brave or a sign of strength. Instead, it is incredibly dangerous and is the quickest way to prove the opposite to be true.
According to the article, "primary nonadherence (not initially filling the prescription written) leads to a significant increase in 1-year mortality after hospitalization for myocardial infarction. Secondary nonadherence (failure to follow the instructions or to refill the prescription) has been shown to increase mortality, hospitalizations, and costs" (Baroletti and Dell'Orfano, 2010). So, for example, when I returned from the hospital after my heart surgery and needed to take warfarin for the first time, that was likely why they were so adamant in teaching me how to take it and why they always ask at every single appointment if I take the medication properly… because oftentimes the answer may be no.
Personally, I am religious about it. While oftentimes that may not be the case, the benefits of being diligent with one’s medicine is clear because "patients with high adherence rates have a significantly lower risk of cardiovascular events compared with those with low adherence rates" (Baroletti and Dell'Orfano, 2010) while, on the other hand, "those who filled none of their discharge prescriptions within 120 days after myocardial infarction had an 80% increased odds of death and those who filled only some of their prescriptions had a 44% increased odds of death compared with those who filled most of their prescriptions" (Baroletti and Dell'Orfano, 2010). So, it is wise to follow your doctor's instructions to the best of one's ability and regularly follow up with them.
Yet, still, these stats are alarming and indicate that people don't take their medications regardless of the risks. So why is that? The article discusses three main reasons. The first is communication barriers, which are influenced by a lack of English or the local language as the primary language. If they are elderly, the common geriatric symptoms, such as difficulty with comprehension, may prove to be an additional barrier. Other potential reasons for nonadherence include, in addition to low functional literacy, possible substance abuse, and even potential mental illness (Baroletti and Dell'Orfano, 2010), which may lead to problems with clarification regarding why and how to take one's medication properly.
The second reason is socio-economic, meaning the problem may be linked to inadequate healthcare coverage and perhaps the cost of the medication. I have some experience with this. For example, one of my medications cost me $200 for a month's supply, and that was on the extremely cheap end. Another time, I had to switch from my preferred asthma medication to a more generic and less effective one simply because my insurance suddenly decided it would no longer cover the cost of the better medication and it was because of this different medicine that my doctor did not take my breathing problems seriously for months, assuming it was caused by the new medication not water retention around my lungs caused by my heart failure symptoms.
The third, mentioned in the article, is motivation, where the patient has poor knowledge of the illness and/or the function and necessity of the medication. This leads to a lack of understanding regarding the purpose and therefore benefit of the medication, and without that, then the absolute need to take it becomes more of a negotiable chore than an absolute necessity. This, in turn, leads to a fear of potential complications and adverse effects. Now, in all fairness, this is a legitimate concern, and I do have a particular adverse reaction of a type of cleaner for skin before a blood draw, which causes me to have breathing problems and a rash so it is always a risk that something could go wrong with a new medication… but it is most assuredly that something worse could go wrong if a health concern, especially one concerning the heart, remains unaddressed especially due to fear of the medication more than the illness itself.
Now, perhaps one may call me a hypocrite because I am not immune to being frustrated by the notion of taking new heart medication. Honestly, there have been a few times when I was irritated with taking an ever-increasing number of medications, especially when it was related to my heart. Sometimes even for no obvious reason.
An example is when I was fifteen and the new doctor, who at this point has saved my life on so many occasions, told me to take a baby aspirin every day to help keep my mechanical valves clean. Now, maybe this was just a symptom of me being fifteen and annoyed that I spent my fifteenth birthday on an operating table getting a new pacemaker, but at first, I rebelled against this medicine and said I had warfarin and that was enough. So, he sat me down, and we went through the need for this new simple medication in detail, and I have been taking it daily ever since.
While I have been a good sport about most of the other medicines, personally, being prescribed diuretics was another hurdle for me. This was because it differed from warfarin, the pacemaker, or even mechanical heart valves, given the meanings they held. They were not an uncomfortable but necessary stop on the eventual "getting better" train. But instead, I saw them as a sign of maintenance for a heart that was rapidly deteriorating, that needed maintenance and would never truly recover.
It seems silly for me to even entertain the hope that my heart would "recover" when that was never even in the cards, but it was what I was told growing up that each surgery would "make me better." Ironically, if I learned anything this year, it is that getting better with CVD is a process and a spectrum, but absolutely not a final destination. I had to realize that every procedure, surgery, and medication I had was all simply in the interest of "maintenance," which, ironically, was quite a pill to swallow.
As you can imagine, I was rather upset when I discovered these past 2 weeks that the "as-needed" diuretics rapidly turned into a "take it daily or else" medication. I felt awful when I did not take it, but realized that I felt awful generally before taking it, but had become so used to it and used to my friends and family telling me I was fine when I clearly wasn’t, that I got used to it just to keep them happy by at least being predictable, because I believed I was not worth fighting for.
However, to my shock and delight, even though the medicine was necessary, I felt infinitely better with the diuretics! More so than I had in a decade! With it on board, my thoughts were clearer, I could write better, move and jump, and even run to the point where my friend asked me to slow down. Mentally, I felt less like I was floating and trying to scrape the ground with my toes while everyone was walking and running around me, which I did not even know I was feeling until this medicine gave me a literal breath of fresh air.
My point is that medication with CVD is a touchy subject that oftentimes is not a smooth transition for a variety of reasons. But it is a necessary one all the same, for the sake of your health at the very least. Your doctors prescribe the medication to help you, not to hurt you. Yes, every new pill and prescription is a potential risk, and the cost adds up on both the wallet and the body. There are several reasons to avoid them, but infinitely more reasons to follow the doctor's orders. In my case, I would not have been able to travel and likely would not be here if I had not adhered to their medical advice. So, my advice is that with medication, treat it like a weapon in your arsenal, used for your own defense. Make sure they're locked and loaded every month and that you are ready to use them to fight for your life, because that is what they are there for. To help and never to harm, even if it requires trust and time, every tool for an adventure does the same.
Can you relate?
Comment below.
Tune in next Monday and Friday for more! I will be writing more now that I'm finally feeling better, so I'm getting a new, more frequent schedule.
Keep ticking, everybody!
P.S. Are there any aspects of CVD health or pacemakers you’d like to know more about?
Feel free to email me at:
Reference List:
Baroletti, S. and Dell’Orfano, H. (2010). Medication Adherence In Cardiovascular Disease. Circulation, 121(12), pp.1455–1458. doi:10.1161/circulationaha.109.904003.
#cvd #chd #travel #medication #diuretics #summer #hearthealthy #medicalprocedure #ablation #procedure #cardiac #cardioversion #chronicillness #medicaldanger #medicaldevice #achd #congenital #heartsurgery #cardiology #experience #pacemaker #afib