In part I of this tale, (On Death Row Without a Date) a doctor says my condition has a five year 78% all cause mortality rate. Crushing news for someone with an active lifestyle and longevity aspirations.
After my initial diagnosis for CHF (congestive heart failure) I dealt with various emotional states including depression. There didn’t seem to be a path forward. So what to do?
We are creatures of habit and mine is riding a bicycle. With that habit persisting I kept riding the trails around Mount Shasta on a full suspension mountain bike even though my GP counseled against it insisting I bring Nitros in case of a heart attack. When riding one day happenstance provided a meet-up with a MD trail friend, Dr C, whose path crosses mine time-to-time. He asked about my condition and found the asymptomatic nature of the CHF diagnosis puzzling and suggested getting a 2nd opinion from a cardiomyopathy specialist. A previously scheduled visit with Dr S, my GP (general practioner), provided the perfect opportunity for discussion with her. She concurred and said look at a teaching hospital like UC Davis, Stanford or UCSF, pick one, let her know and she would write a referral. After a few internet searches and a friend-of-a-friend recommendation I decided on Stanford.
Stanford called and set up an appointment for about a month out. At this point they had results from the stress test, echocardiogram and angiocardiography. The stress test showed the LBBB (left branch bundle block). The echo revealed the low ejection fraction numbers. The angiocardiography confirmed there were no major blockages or narrowing of the arteries. The reported ejection fraction usually means people get out of breath walking up stairs while I continued blissfully with no symptoms other than my riding buddies kick my ass every ride.
My brain and emotions continued playing me and maybe that’s normal — IDK. After the first cardiologist visit with the shocking CHF diagnosis, high risk mortality rate and meds for life prognosis, my emotional state processed the stages of grief for the now dead healthy self-image taken down like the statue of an unpopular historical person. So, when hearing the two Stanford cardiologists tell me a cocktail of drugs was the way forward, I was in a more receptive state.
There was also a marked change in bedside manner. When I repeated the original cardiologists pronouncement of a “78% all cause mortality rate — same as cancer” of leaving CHF untreated the senior Stanford cardio, DR K, rather sanguinely said he wouldn’t phrase it that way. And, when I repeated the first cardios description that the beta blocker would make every bike ride feel horrible until one pushes past a certain HR threshold, Dr K again said that was not a foregone conclusion. I debated them about the need for meds since my condition was currently asymptomatic. The answer was — yes, you are asymptomatic now and we want to keep you that way!
OK — that makes sense! In a way, the first cardio softened me up and the Stanford team of Dr B and Dr K were then able to reason with me. I decided to go forward in spite of my anti-med inclinations and misgivings about expected complications. Pill-paranoia-me was convinced side effects like stomach distress, lethargy and feeling like crap when cycling were certainties. An engineering background helped ground me and decide to treat this as an experiment and see what happens when taking carvedilol, Entresto, and spironolactone along with the pravastatin and baby aspirin.
Yikes! I am a freaking chemistry experiment and in the matter of a couple months have gone from someone on no meds to now keeping a weekly pill organizer. Since it was winter time and my cycling was mostly on a indoor trainer with built-in power meter there was good data to compare with. For roughly the same power wattage over a one hour period my heart rate was about 20 bpm lower. And, I felt alright! That was a very good outcome. And, I didn’t have any stomach issues or other side-effects. The Stanford cardios ordered weekly blood tests for three weeks and those were OK.
My first ride with the local cycling club didn’t go quite so well. It was a fast group and I got dropped right away. There were a couple regroupments and one buddy thankfully rode with me even though he could have kept up with the youngsters. So, 42 miles later I am having coffee with the guys and feeling OK. However, that night and the next day I had a few episodes of light-headedness when standing up after laying down. Dr B at Stanford said to drink more liquid but nothing with salt. I debated with Dr B and K about the no salt edict and lost.
This led to another process where I worked with a nutritionist that the sports nutrition website, The Feed, provides for free. A very nice service that does lead to sales for them since the products are sold on their site. But, I would not have figured this out on my own so quickly and probably would have procrastinated and maybe never changed which bars and gels to eat on a ride. I gave away all my LMNT since it is so high in sodium. And, I am not going to buy anymore Skratch products in spite of really loving the taste and results since it tends to be higher sodium. I’m now trying to consume around 70g’s of carbs per hour when on the bike. That is helping my Garmin body battery number to not bottom out and recover faster. I also started supplementing with magnesium (no calcium) which seems to help as well.
Is all this working? I returned to Stanford about 4.5 months later for another echocardiogram and cardio MRI. The good news was my LVEF had improved from 31 to 45%. And, I have returned to about 80% of the amount of riding I was doing pre-CHF diagnosis. Other than getting left in the dust by most of my riding buddies, I feel fine. My condition is still asymptomatic. They added Jardiance to my med list which is given to type 2 diabetics and CHF patients. Supposedly it helps your heart and kidney to function better. I am at day 6 and not feeling severe side-effects though had three days of light-headedness when standing up.
The cardiac MRI did not show any heart damage. Even Stanford doesn’t really know what happened and why I have CHF. Dr B believes the LBBB is the cause of the low LVEF. When I asked her what causes LBBB she said “no idea”. So, I am back to what the first cardio told me in Part I of this story…… “You didn’t do anything wrong.”
Can I find some joy again? A CHF diagnosis associated with a shortened lifespan and debilitating symptoms is not joyful but I have adjusted to the medications and mentally accepted a new reality. Physically I feel close to the same as pre-meds (see P.S.) And, being able to ride my bike, alpine ski, hike up hills, and feel normal has been joyful. And, maybe, just maybe I have become a little wiser and humbler facing death in a new way. Growing as a human being is good — isn’t it?
P.S. In talking with Dr. B about how the meds were working I told her the weekend before the new echo, cardiac MRI, and followup visit was the 2nd running of the Honey Badger 100K gravel ride. She is typing away and asked how it felt. “Well, pretty good though I was the last person in the small group of riders to finish”. She nods to affirm while typing the notes. “But, compared to last year on the same route, I was 0.8 MPH slower”, I said in a tone indicating concern about the meds influence on my performance. Dr B stops typing and turns her head to look at me and in a faintly exasperated tone with a hint of a smile says “Whoop-ti-do, that could have been the wind!”
