Congestive Heart Failure – Catch 22

Life is a war we all lose eventually. How long the war lasts is unknown to us, but throughout our lives we fight various battles (congenital defects, diseases, etc.). For some of the battles, we are on our own. For most, we can enlist the aide of other people who know our opponent better than we do. Currently I am in a battle that I hope will last a long time, I’m fighting Congestive Heart Failure! In this endeavor I have called upon an excellent team of cardiologists and their technicians to assist me in the fight. 

I’ve had heart problems since birth. My first 13 years my mother was in constant fear that I wouldn’t make it. Long distance cycling, swimming and running for endurance managed to strengthen my heart to the point that the original problem was eliminated. I remain as active as I can be. Being active is what keeps me alive!

A few months after my 61st birthday, I tried Vietnamese food for the first time. The food tasted great, but about 3 hours later, as I was getting out of my car to visit a friend, I had some sever pain I thought was indigestion (my first ever as I never had any problems with eating before), it wasn’t! I happened to be extremely lucky in that my friend was a patient at the Mayo Clinic in Phoenix and within 20 minutes of that pain I was in the Cardiac Cath Lab getting stents put in. By the next morning, I was pacing in my room, anxious to get back to moving around.

A few months after that Heart attack, I had my second one. This one was quite mild in comparison and was treated using drugs alone. The most memorable thing about that one was sitting up quietly in bed with my heart monitor’s alarm blaring at me because my heart rate was too low. The nurses noted my alertness and did their best to try and tell the on duty cardiologist that I was awake, sitting up and asking for some coffee. About 3 hours of this mess, my cardiologist showed up talked to me for about 15 seconds and then asked the nurse to get me a couple of cups of coffee. After a few sips, the alarm went quiet! Shortly after that, I was allowed to move around the area with the portable heart monitor steadily showing a large improvement in heart activity. 

Other problems (bilateral knee, right hip replacements, and a few bouts of pneumonia) were skirmishes along the way for the next few years. As I had been told that I would be permitted to run after the replacements had been in for a year, I started working towards that goal by taking long walks and going to a gym on a more regular basis. I felt better than I had in years and figured the worst was over for now. My wife and I sat down and planned and paid for a few trips to enjoy the fully functioning me.

A few days before I turned 65, just after I qualified for Medicare, I walked the 3 miles to the local Y, did a full circuit of the machines with a class, and about 10 minutes afterward while cooling down felt the same feeling of “indigestion” I had during my first heart attack. As I went to stand up to get some water, the pain increased. I calmly told the instructor to help me to the floor and please call 911, I told a friend the combination to my locker and asked him to bring me my Nitrostat. A few hours later, I was once again getting stents. 

Aside from the pain associated with the burns from the defibrillator pads (my heart stopped twice), my recovery went well and I was once again working towards my goal of running again. I had gotten my walking up to the 2 mile mark, when I started getting overly tired by the end of the walk. Over the next week, the point of my exhaustion kept decreasing my distance. Mid July I was given a stress test, which was halted earlier than I expected. On August 2, 2018 More stents were placed during a very risky procedure. By the next day, I was pacing the hospital corridors anxious to go home.

I had once again gotten my walking back to the 2 mile mark by the beginning of September. Something wasn’t right. I developed a cough that wouldn’t go away and was particularly bad if I tried to lay down. I thought this was the onset of another round of pneumonia, and went to see my Primary care physician. He ordered a chest x-ray and antibiotics. The cough wouldn’t go away. He then put in a request for a CT scan. When going over the results, he calmly said that I should call and make an appointment with my cardiologist as there was a note on the CT scan that they would want to follow up on. Thinking it was no big deal, but curious as to what the report said, I called my cardiologist’s office and asked to make an appointment. I was requested to wait on the line a moment. Thinking that they were looking at the schedule, I got the shock of my life when told, “Can you be here in about 20 minutes?”

I got the impression that whatever that report had said, it must have struck a nerve with my cardiologist. I had never gotten an appointment with his office that wasn’t at least 1 week out. A quick examination was done along with an EKG. I was then given the news I was not prepared to hear, “You have Congestive Heart Failure, we need to add in a diuretic to try and relieve the fluid build up around your heart. By the way, you are not able to fly anywhere, so any vacation plans you have will have to be changed.”

The November trip to Southeast Asia was no longer a reality! I started to feel depressed. I did what I normally did to calm myself. I tried to take long walks. But the walking was getting harder to do. I had trouble playing with the dogs and when I went to get my echocardiogram, I was down to less than a tenth of a mile of walking. This alarmed my cardiologist and a review of my angiograms was done as well as the echocardiogram and EKG results. This led to another round of stents put in on October 25, 2018. 

Although I had no trouble walking in the hospital corridors, I was told that no matter how good I felt, I was not to get my heart rate up to high. Too high was clarified as keep it below 104. When asked about this restriction, the answer was, “We want you to stay alive.” I have an arrhythmia that starts at a heart rate above 108 that affects my heart’s ventricles. Since this can be fatal, I do my best to stay within those guidelines. It is a tough challenge, just walking at my normal pace can easily get my rate too fast. 

I am concentrating on endurance these days. I am up to 4 miles, in a 2.5 hour period, which is ok, but very frustrating. The medications I take regularly have now gotten me to a point where I can lay on my back all night with a minimal amount of coughing. If I can get another week of this, I will be able to get an ICD, which will eliminate some of the fear associated with trying to keep my exercise in check. I will still have to try and keep my heart rate down at least until I am in a cardiac rehab class, where it can be safely monitored.

The catch is that in order for your heart to improve its function, one must exercise. Yet exercise that makes my heart improve puts me at a higher risk of Vfib! Life is tough, but getting old is still better than the alternative!