How Aldactone became my advocate.

I am always looking for solutions that will raise my low blood pressure and raise the amount of potassium I can include in my daily diet.  These are two factors that my doctors monitor (or have me monitor) on a frequent basis.

Since a number of the drugs that I take cause a decrease in blood pressure and an intake in blood potassium levels, that would seem to be an easy fix, right?  You just decrease or eliminate a drug that to you doesn’t seem to be doing much for you.  To my non-medical mind, it seems to pose little or no risk to implement, and then voila – problem on the way to being solved.
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Except as my sister always says to me – and where did you get your medical degree?  And of course, the answer at best is at the school of hard knocks.  But the last time I checked practical experience with your own body and its trials and tribulations, while useful, is not good enough to make a medical diagnosis or discontinue taking a medication on my own.  As much as it pains me to admit it, you need the doctor for that – or in my case two doctors.  So, I would never discontinue a drug on my own.  But I would, and I have, lobbied for maybe altering the drug treatment plan.  Hey – give me credit for being compliant yet persistent.

The drug that has been most recently on my radar screen was a drug with the brand name of Aldactone and the generic name of Spironolactone.  For purposes of this post we will call it Aldactone as that is easier to type and spell check even recognizes the word!  I have been taking Aldactone ever since I was diagnosed with heart failure, a period of approximately six years.

So, what is Aldactone?  Here is what the website accessdata.fda.gov says:

• Aldactone (spironolactone) is a specific pharmacologic antagonist of aldosterone, acting primarily through competitive binding of receptors at the aldosterone-dependent sodium-potassium exchange site in the distal convoluted renal tubule. Aldactone causes increased amounts of sodium and water to be excreted, while potassium is retained. Aldactone acts both as a diuretic and as an antihypertensive drug by this mechanism. 

I used to take 25 mg per day of Aldactone.  However, after a few years the doctors decreased the dosage to 12.5 mg per day because I was retaining too much potassium.  To my knowledge, the manufacturers do not make a dose of this size, so I end up cutting the pill in half.  (A pill splitter has become one of my favorite tools.)

As far as I know, the drug was prescribed for me for the diuretic qualities, in other words, to deal with water retention issues.  I had a more pronounced water retention issue about 5 years ago.  In addition to the Aldactone, I was also taking a more heavy-duty diuretic known by the brand name as Lasix (generic name furosemide).  But about 18 months ago while conducting a cardiac catheterization, the heart failure doctor noticed that I wasn’t backing up any fluid and suggested that I attempt to wean myself off the Lasix but remain on the Aldactone.  I did this and have been off the Lasix since then with no residual fluid retention.

In the last cardiac catheterization, which was about 6 months ago, I will still not backing up fluid and in fact seemed very dry.  So, in my mind (which of course is a legal mind not a medical mind), I began to look for a loophole.  I did not seem to be retaining water either.  So why not go off the Aldactone, as it looked like the lack of water backup and water retention meant that the drug was no longer needed. 

Because I happily lobby my doctors, I mentioned my suggestion to the heart failure doctor.  He said this was not a good idea as there are other heart failure impacts for the Aldactone other than as a diuretic for water retention.  For some reason, my usually curious mind failed to ask the question:  And what might those be?

Fast forward to the end of August, when I saw my cardiologist.  Although I was reconciled to cutting my potassium and having low blood pressure, I still was not the happiest camper about it. So, when I saw my cardiologist, I asked whether it would be possible to go off the Aldactone.  He agreed with my heart failure doctor that there was another heart failure impact.  This time, I stuck around for the discussion of what that impact might be.  Based on what he told me, I think this other impact is huge.

The cardiologist told me that over the years, the medical field found that Aldactone helped to address fibrosis, or basically, scarring of the heart.  I know my heart has become weaker – but it was news to me that it was scarred.  I bet that happened during the damage or “cardiomyopathy” that also ultimately enlarged my heart and made the pumping fraction so freaking low.

How to explain what cardiac fibrosis is?  Well, I did find a March 2019 article on the American Heart Association entitled Is Long Distance Running Good for the Heart.  It discussed a 2012 study on long-distance runners.  One of the participants said:  "our theory is that 25 percent of people are susceptible to this recurrent injury of the heart. A smaller subset, he estimates about 1 percent, could be prone to scarring. Myocardial fibrosis, or scarring of the heart, can lead to heart failure."  I did run prior to my heart failure, but I was not into long-distance running. 

The article did not discuss how Aldactone treated the scarring.  So, I looked further.  Alas, most of what I can find on websites is written in heavy medicalese or is about a clinical trial.  But I did find a February 2015 article on the USPharmacist website by Kristin Reilly entitled “Cardiac Fibrosis:  New Treatments in Cardiovascular Medicine”.  It says:

• Heart failure is initiated by any event that impairs the heart’s ability to contract and/or relax, resulting in reduced cardiac output. As cardiac output decreases, compensatory mechanisms activate to restore cardiac output through increased preload, tachycardia, vasoconstriction, ventricular hypertrophy, and remodeling. At the cellular level, ventricular hypertrophy and remodeling are accompanied by cardiomyocyte hypertrophy, necrosis, apoptosis, fibroblast proliferation, and increased deposition of fibrous collagen, the last two of which are collectively termed cardiac fibrosis.  This article will focus on cardiac fibrosis, including its mediators.

So, confirmation that heart failure seems to be precipitated and/or accompanied by fibrosis or scarring.  But nothing yet on what is it that the Aldactone does to help with the scarring.  Again, here is another paragraph from the USPharmacist article:

• Aldosterone has also been identified as a mediator of fibrosis. It affects fibroblast proliferation and collagen deposition in the ECM, heightening expression of cytokines and chemokines, signaling macrophages, and activating cardiomyocyte fibrogenic signals.

Okay, raise your hand if like me, you were totally lost in this paragraph.  Unfortunately, after a number of different searches, I have yet to find something that humans can comprehend (like on the Mayo or Cleveland Clinic or AHA or other heart organization websites) that explains the heart and fibrosis and Aldosterone.  It seems that for now, this topic is just written about for those who research and speak an entirely different language than most of us.

But I take it that Aldosterone might be enabling fibrosis, which in my mind would not be a good thing.  Since Aldactone is an Aldosterone antagonist, and since a synonym for the word antagonist is adversary, I am assuming that Aldactone is my champion in fending off the army of Aldosterone and other forces that allow fibrosis of my heart to even occur.

I am also thinking that while I look fit and rosy complexioned on the outside, the inside picture is totally different.  If my heart is dilated and scarred, then it resembles an out of shape, acne ridden female.  Yikes – maybe Aldactone and some of the other drugs can also begin to perform duties as my heart’s personal trainer/make-up artist!

If a doctor or nurse or other medical professional were to read this explanation, I am sure they would probably shake their head and wonder if my explanation was an attempt to trivialize medical treatment   In fact, I am trying to do the exact opposite.  I am trying to learn as much as I can about my condition so that I can help them to help me learn to manage it better.  My best option would be to have my doctors at my disposal 24/7 so I could get answers to all of my questions when they pop into my head.  But since they have many other patients and responsibilities, as well as a personal life, this is not a realistic option.

So, I look on what I think are reputable, knowledgeable websites to try to figure out what things mean.  I hope that this will better inform my questions at my next appointment and will help me understand why all these drugs are a necessary evil.  And the humor – well lame as it may be, it is my way of trying to manage the chronic illness without having an anxiety freakout.

So if thinking about the Aldactone as a many faceted advocate can help me stay on track treatment-wise and attack anxiety, isn’t that a good thing?