When I was given the news in 2007 that sarcoidosis affected my heart and that I had 5 to 10 years before I would need a heart and lung transplant, I was determined to prove doctors wrong. There was no way I was having a transplant. I was going to live way beyond the ten year prognosis with the heart and lungs I was born with.
Having such a mindset lets you not only survive and thrive, but you can also push too hard to prove to everyone that you are invincible. You may think you are fooling the world to no avail and to the detriment of yourself.
These past couple of months I have not been doing very well. My breathing gets labored, I have shortness of breath and in general not well. Yet, I have been trying to prove to the world and myself that I am just fine. But the world knows the truth. I was only really fooling myself, but not even.
I have been working long hours, some days fourteen or fifteen hours, without a break. I have not been using my oxygen as much as I should. I wear a face mask all day which is not exactly the best thing for someone with lung and heart issues. I have not been exercising and my diet in the last couple of weeks had way too much salt.
That’s when life intervened to slap me up across my head to tell me I needed to slow down and take care of myself.
I was leaving work andjust put my portable oxygen concentrator in the front seat of my car when I yelled out from pain that hit me hard between my left shoulder blade and spine. The pain was sudden, piercing and intense.
I wondered what I did to pull a muscle in my back because my concentrator weighs next to nothing. I got the rest of my stuff, locked up at work and drove home. As I got out of the car, my wife saw my face and knew that something was wrong.
My pain tolerance is very high and if I am showing signs of pain, then it’s bad. I told her that my back started to hurt for no reason and as I was telling her, another, equally intense pain shot into my chest right at the area of my heart. I wondered if I was having a heart attack, but I know my heart. I know when it is beating well, when its rhythms are out of whack, when it is going too fast and when it slows down to a crawl. I feel it and I knew that this pain was not coming from my heart, but right next to it.
Still, I took an ECG on my Apple Watch just to see if anything was going on with my heart. I did five different readings and they all came back normal, although the AppleWatch does disclaim that it does not check for heart attacks. I knew this was not a heart attack, but the pain was bad.
The next morning the pain had subsided substantially. My wife asked me if I needed to go to the doctor and since the pain had subsided somewhat, I said no. It only hurt when I took a deep breath. I wondered if this was just a really bad case of indigestion. In reality, this was a bad case of denial.
The second night I went to bed and when I lay flat, the pain in my chest was intense, so the next morning I sent my cardiologist the ecg reports from my watch and he told me it was not looking like a heart attack, but the pain I described could be from a blood clot in the lung.
I really did not want to go to the hospital because who wants to be in the ER with Covid19 so rampant? The next day I went to my doctor when I coughed up blood, did a CT scan and and EKG and thankfully I did not have a blood clot or a heart attack. What I did have was a pneumothorax or a collapsed lung. My lung literally popped.
You guessed it. I ended up in the ER and was hospitalized for three days. Thankfully they did not do any surgery as the collapse was right next to my heart and also I am on blood thinners, so the procedure risks were too high.
I think I realize now that I am not Superman and invincible. I have a lot of stuff going on with me that I seriously need to look after. I saw the images from the CT scan of my chest and I was shocked. I am always told that my lungs are scarred, but when I was shown the images, there were literal holes inside my lung from the Sarcoidosis.
Seeing those images really put everything into a new perspective. It’s not that I am resigning to the disease but actually it has woken me up to take more action to improve my condition but with the reality that I am not invincible and sure as hell not Superman.
Basil René was diagnosed with pulmonary sarcoidosis in 2006 and cardiac sarcoidosis in 2007. As a result of sarcoidosis, Basil René has heart failure and lives with an implanted AICD.
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