Superman Is Grounded


I went into NYC for an ICD interrogation (Fancy term for reading my defibrillator), a simple procedure where the doctor downloads the information from the device and makes sure everything is okay. That little device – I call him “Buddy” – keeps track of my heart so completely that it even tells them what days I was active.

I sometimes have a couple of short A-Fibs, which usually only last a minute or two, and the heart regulates itself quickly. In a three month period I may have one or none. This last period I had four, in as many consecutive days! And they all happened in Arizona when I was on vacation and feeling the best I felt in a really long time.

I had so much energy there. I was revitalized, energized and just a crazy bunny hopping from place to place. I was going non stop.

And therein lies the reality check. Even though I may feel great and have energy enough to light up a state, the reality is that even though my heart has improved in its output and strength, the ticker is still damaged from sarcoidosis, and no matter what, I need to remember that. And I also have to remember that I also have pulmonary hypertension, a leaking hole in my heart, and severely scarred lungs.

That does not mean I stop and baby myself and walk around with a feel sorry for me attitude. It means I take better care of my self. I respect that there is a problem, or in my case, more than one, and get the rest I need. I need to go to sleep at a decent time and not between two and three in the morning. I need to take naps during the day like I used to. I need to exercise and eat better. I need to respect my body and not abuse it because it feels as if everything seems to be working right.

I know. I said all this before. But it is not until you see it on a piece of paper that your heart went into an irregular rhythm four days in a row, because I thought I was superman, that reality hits you in the face.

My wife sometimes needs to give me a reality check and remind me that I am not a well man. I don’t like to hear it, because deep down inside I still don’t want to accept it. By pretending I am superman, maybe it will all go away. But it won’t.

Don’t get me wrong. This does not mean I have given up or lost my positivity. It just means I realize that I need to respect my body’s capabilities and use my oxygen as I am supposed to. I was being good with the oxygen use, but then I started to feel better so I stopped using it when I go out. I haven’t stopped taking my heart medicine because my heart got better, so why stop the oxygen? It’s the best prescription medicine I have.

It seems I need a constant reality check when it comes to my health. I tend to live in a fantasy world where that is concerned. When I feel good, I think that it is all good. I can do no wrong. I am invincible. But I am not. I am human. And a human with a few imperfections in the health department. According to all my doctors, I function amazingly well for someone with my combination of medical conditions, so much so I baffle them. However, to keep up that level of functionality, I need to respect the reality of the situation and slow down, take a deep breath and put the cape away.

2 Comments Add yours

  1. I totally relate to what you have said here. I was in constant a-fib for over 4 months and now that I have converted out of it I have more energy than I have had in over a year. In the last 2 weeks I have been more active, done yard work and lots of spring cleaning on the house. However today the doctor told me that if they can’t get my EF above 35 we have to think about a Defibrillator. I feel great but am being told how sick I actually am, it is hard to reconcile the 2 together sometimes


    1. Basil Rene says:

      Thanks for the comment. I look at my defibrillator as an insurance policy. I hope I never have to get that kick in my chest, but if I do, I know it’s there. Sudden death does not sound very romantic. It does sound scary, the prospect of having a defibrillator implanted. But think of the alternative. When I first had it implanted, I was afraid it might go off. I got over that. I hope you are able to get you EF up. It is not impossible. When I was first told I had heart failure, my EF was between 20% and 25%, and I was told it would never get any better, and that I would need a heart transplant in a few years, around now according to the estimates. Now I have an EF of 45% to 50%, and everyone is baffled, except me. I accredit it to a) healthy living, b) positive thinking, c) hope, and d) faith. Faith in the universal power/God/Jehovah/Allah or whatever or whomever you wish to call it. Have faith that you will get through and if not, the journey will not be difficult. Once you tell yourself and BELIEVE that things will be better, they will. When the heart failure specialist told me I would need a transplant, I looked him in the eye and said “No, I will get better”. He smirked. Now there is a medical paper written about my case and how it baffles them. All the best ad keep those recipes coming. Still waiting to hear about those pickle!!

      ____________________________ Sent from my iPhone on AT&T®


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