“The dangers of life are infinite, and among them is safety.” ~ Goethe
Sometimes we never "go back" to what we were before. Of course this is an undeniable truism of life - life changes us every single day, in fact every single moment - but most days we don't notice the small and subtle changes. But then there's the big things. The things that shake up the status quo.
Since I last wrote I had another echocardiogram. That one, three months after the previous normal one, also came back normal. So, based on that, I'm normal. I don't normally consider myself very 'normal' but in this case normal is fine with me. Though, my cardiologist will do more echos periodically to make sure everything keeps working right, I guess I can really start living again. But, there's this giant unknown hanging over me.
When you are diagnosed with something like Myocarditis, and with it heart failure, it changes you, or at least it changed me. I never gave my heart much thought. It seemed to be working fine and kept allowing me to do some pretty crazy things. The fact that I had no symptoms even when my heart was failing, is still rather disconcerting. In fact, when I tell others this, I sense real shock and maybe a little cause for pause. I can see the *WTF* look in their eyes. They don't really believe me. But it's true. We never really know what's happening inside - even those of us who are pretty damn aware of what's going on in their body. If it could happen without my knowing before, what if it happens again? How will I know?
Before everyone starts points to my coughing/breathing issues (which everyone does!!), let me explain how that all played out:
The issues began around January, 2017. I remember running Black Canyon 100k (DNF at 55 miles in freezing, dumping rain/sleet with hypothermia). My real breathing issues began here, having started that race with a "little" post-cold upper respiratory stuff that became chronic hacking after that race (Warning: Do not run a freezing cold, raining, 100k with an URI!!). After that I was diagnosed with bronchitis. My coughing was so violent that I ended up straining my diaphragm, resulting in pain for months. The fact is, and I can see that clearly now, that issue was never entirely resolved. Slowly and insidiously, the coughing and breathing issues continued and increased. I kept asking my doctor for some help in resolving it: First she diagnosed me with exercise induced asthma (via email, not a physical check up) and prescribed an inhaler. Case closed. But it wasn't. The inhaler did nothing as far as I could tell. I kept telling her that I felt that the whole thing started in my sinuses. She kept dismissing my issues - probably because she believed it was much ado about nothing - after all, I could run a hundred miles. After running Silver Rush 50 in July 2018, and having a horrible attack that lasted from about mile 30 to the finish following a bad electrical/hail storm at 12,000 feet, and then hacking uncontrollable for hours after (also rainy, cold conditions), I demanded tests. A pulmonary function test was ordered and came back negative for asthma. She said, "Okay, let's test your theory and have you start daily nasal steroids" (note: I had been using these for some time the previous year, following Black Canyon, but they caused a perforated septum!). The steroids got me through Leadville 100 (well, 100k) without any breathing issues. But then a month later, having backed off the steroid use because I didn't want to keep using that crap, the breathing issues returned. I got through Tunnel Hill 100 and had an appointment set for a week after to focus on figuring this out once and for all. My doc spoke with the pulmonologist who wanted some tests before moving forward. I went in for another pulmonary function test, this one with a methacholine challenge, and that was negative. Then came the echocardiogram to "rule out" heart conditions. Anyone who's been following this knows how that went. I had the echo three days into the flu, and had a fever of 103 during the test, but since it took two months to get the test, I did not want to reschedule as everything was on hold until all the tests were completed. I called my doc the morning of the test asking if there were any reasons not to have it done while sick with a fever. She responded later:
"The flu-like illness shouldn't affect the results.We do have a cause of your shortness of breath, but it isn't good news. Your heart function is decreased (this is called cardiomyopathy) but all the valves are working normally in the heart. This means we have to determine a cause of this decrease.It is possible that being an endurance athlete has contributed..."
Of course running is to blame - and in some cases it is, though running rarely causes this particular issue. Most endurance caused heart issues are electrical. Mine was the plumbing.
I have since learned that a fever can cause temporary cardiomyopathy. But a fever/flu can also be a symptom and/or cause of Myocarditis. So, thus began my months of "cardiac rest" after all other tests came back negative and/or normal.
But here's the thing, after my normal echo three months later, my coughing/breathing issues had gotten worse. My cardiologist, from the start, agreed that the coughing had no connection to my heart function. And as my heart function was now normal, the breathing was at its worst ever. My runs would start out great, and within 2-4 miles I was reduced to a gasping, breathless walk. I had seen an ENT while being treated for the heart stuff, and she diagnosed vocal cord dysfunction, only because she saw no other issues. VCD is a grab-bag type diagnosis - its cause can be sinuses, GERD, damage to the vocal cords, even anxiety - but I was still convinced mine was sinus related. My theory was that I had managed the sinus stuff with sudafed (taken every so often when things got bad, never regularly) prior to the heart issues. But while being treated for the Myocarditis I couldn't take sudafed. So, once I was off the heart meds I emailed my ENT: "Can we just try a round of antibiotics, just to see if they have an effect?" She agreed to test my theory and within two weeks there was substantial improvement. By week three, it was all but gone. The "all but" is still an issue and I am managing it. I still have very occasional, but manageable, issues and will probably need to do another round of antibiotics - but in the end it has been determined that the cough was completely unrelated to the heart issue. People do not believe me, or don't want to, which is why I am putting it all down here.
The truth remains:
I had NO symptoms of heart failure.
I now have no symptoms of heart failure.
In the event that my heart once again fails, will I have symptoms?
Hmmm. While the past does not guarantee the future, my experience is not very reassuring.
So, what to do now? Sit around and wait? Wait for what? How long should I wait before I feel confident that it won't happen again? Will that ever happen? Will waiting provide me with peace of mind?
When runners die running, people rush in with comments like:
"He/She must have known something was wrong."
"Watch your heart folks"
"Pay attention to your how you feel."
"How could someone not know something was wrong?"
“Security is mostly a superstition. Life is either a daring adventure or nothing.” ~ Helen KellerSo, will I ever feel the way I felt before this all began? Not physically, I feel completely normal physically - but mentally. In the past I never really gave a second thought to pushing myself - I don't mean day in and day out - but I mean in a race or training in general.
Sometimes you just have to choose to live. You don't get days and years back. Yes, there are times to sit back and wait, heal, recover, rebuild. I've done that now. Have I given it "enough" time? No one knows. The doctors don't know. I don't know. No one knows.
So this weekend I will run a 50k. It's my first actual "Race" this year. It is a training race, hopefully, for Tunnel Hill 100 in November. Tunnel Hill was my last real race since this whole nightmare began, and for me, returning this year is deeply symbolic and important. It's something I need and if people want to weigh in on the "prudence" of that, I will only say: Please keep it to yourself. This is MY life. This is my ONE life.
I refuse to define myself by something that has happened to me. I will not reduce myself down to this "condition" that just happened to pick me. Yet, some things happen in life that do change you profoundly. They redirect priorities, make you aware of things that never dawned on you before, open your eyes to a new perspectives. And these things can not be passed onto others, for they are all ours. We can try to explain, but no one can understand another's experience, and no two people have the same experience. I hope to hold onto the awareness that I've gained and push aside the fear of the unknown and unknowable.
“Go out on a limb. That’s where the fruit is.” ~ Jimmy Carter