“I am not sure where to go forward from here”. Those words were said to me by my sarcoidosis doctor after delivering the results of my PET scan, which shows that the sarcoidosis is back and active again in the heart.
What exactly am I supposed to do with that? I am a fighter and I intend to once again beat this into submission, but when your doctor tells you those words, initially you can’t help but feel deflated.
My sarcoidosis doctor wants me to have an echocardiogram and then move from there. But words are such a sensitive thing, especially when used by a person that has taken an oath to not do any harm. Simple words like those can be so damaging. Said to someone else, it may have caused that person to give up, to think there is no more hope, that everything has been done, and there is nothing left but to die.
When I was first diagnosed with sarcoidosis of the heart, I was told that I had a 50% chance of living five years, and a 20% chance of living for ten. I don’t like statistics and I intend to prove them wrong.
And now sarcoidosis has poked it’s head out of remission to stir things up again. This is just another bump in the road of the journey of my life. I have not reached the end of the highway, but I have reached another intersection. I can turn left, and drive to the dead end and call it quits. I can turn right and put my fate in the hand of doctors alone and just see where the road goes, and for how long. I chose to forge straight ahead and fight this thing. I have no intention of getting off this road anytime soon.