It’s another beautiful Monday morning, and here again is look back at one of my post from July 2010. At the end of the post I have an update in reference to this post.
But Wasn’t I Supposed To Live To Be 92?
Posted on July 5, 2010
Have you ever seen the TV series “Whose Line Is It Anyway?”? It’s an improvisational show where the performers are given a basic outline of a story, but they must make up the script as the go along. Sometimes, the outline of the original story changes and they end up on another path altogether.
That’s how I think of life. When we come to the planet, we already have an outline of the path our life is supposed to take in order to learn our personal life lessons. However, stuff happens along the way, and we are given free will to go which ever way we see fit.
According to an old “spiritual adviser” that I met when I was in my twenties, I am supposed to live until I am 92. Amazing that she knew the exact year! Not according to statistics however.
I was in Mt. Sinai hospital last week for my semi-annual pulmonary exams to see if there is any progression of my sarcoidosis. All the tests came back that I was still in remission with no active granulomas. However, I do have extensive scaring which will never go away. So all in all, it’s a good thing as far as my lungs are concerned. This week my defibrillator gets remotely interrogated, which would let me know how the hearts been behaving in the last three months, and then I see my cardiologist next week. Seems the tests are never ending.
While I was waiting at the doctor’s office in Mt. Sinai, there was one of those Medical Journal magazines that had an article on Sarcoidosis, mainly cardiac sarcoidosis. I have both pulmonary and cardiac sarcoidosis. I already read these statistics, but they were listed again in the journal – cardiac sarcoidosis is responsible for 77% of sarcoidosis related deaths, and patients with cardiac sarcoidosis have a 50% change of surviving 5 years, and a less than 40% chance of surviving 10 years.
I was discovered to have heart failure three years ago next month, so statistically, I have a 50% chance of living two more years, and a less than 40% chance of living seven. That sucks. Not that I have a statistically short life span, but that the medical society has decided that I have cardiac sarcoidosis, so that’s it, settle your business, buy a plot, you’re going down!
I refuse to accept that. I was told one week after having my defibrillator implanted in my chest that I had a low ejection fraction, that it never gets better in sarcoid patients because of the irreparable scaring, and I would need a heart transplant in the future. I looked at that doctor and told him I will get better. I did. I beat the odds. I defied and puzzled the “experts”, so much so they did a medical paper on my case. My ejection fraction increased despite having severe pulmonary scaring, a scared failing heart, and an over pressurized pulmonary artery. I am not saying I am healed. I am saying that I told my self I was not going down now, and I will get better, and I did.
I still have a lot of work to do, and it is tough. I have to lose weight and I am limited in the amount and intensity of the exercise I can do. Some days it feels like I am climbing Mount Everest to climb a flight of stairs, and others I feel I can build a skyscraper. I know that I could die tomorrow, who knows, I could get hit by a bus. So I don’t dwell on the statistics of the medical world. No one can tell me when I am supposed to die. I will go out when I am supposed to. Not before, not after. And until that time, I will continue to love and enjoy each day as it comes, continue to appreciate the sound of the bee as it buzzes in my garden, the hummingbird drinking from the hibiscus, my adorable dogs and cat and their quirky ways, my wife and best friend who has been at my side through thick and thin, and life in general.
Medicine improves every day, so who is to say that I won’t live to be 92? Maybe my script was already written and my life is not an improv act, with the ending happening before the audience expected. Who is to say that old toothless woman, high in the hills of Trinidad, sitting at a table in a darkened room with a single burning candle, was wrong? I’m kinda hoping she was right.
In March and April, I had echocardiograms and X-rays and PFTs and everything is improved. My lung X-ray is the clearest it has ever been, my breathing function has improved and my heart function is now at 65%! What more can I ask for?
- Cindy Jo Bruce’s Sarcoidosis story (frankr311.wordpress.com)
- Diagnosis (othersideofsarcoid.wordpress.com)
- wayne Hunter’s Fight Against Sarcoidosis (frankr311.wordpress.com)
- Living with sarcoidosis: Sarcoidosis costs Jackson man nearly everything except marriage, faith (mlive.com)
- Happy Anniversary? (lifewithsarcoidosis.com)
- Carla Marcom’s Sarcoidosis Story! (frankr311.wordpress.com)
- On the Other Side of Sarcoidosis – (othersideofsarcoid.wordpress.com)