It’s Back!

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“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.

2 Comments Add yours

  1. Deborah Lardinois says:

    Oh how I feel your frustration. When pushed up against that wall, I intend to try eastern medicine. and if that doesn’t work, I’ll try a witch-doctor.

    And I agree that doctors need to be aware that their words – simple words affect us.

    But as patients, we need to challenge our doctors. When they say, “I’m not sure where to go from here,” we need to say – what are the options? We need to ask, have you consulted with other doctors? We need to challenge them to look beyond their own egos and resources to see if they have pushed all the buttons on our elevator known as life.

    I like my sarc doctor, because he tells me what he’s thinking, and he allows me to challenge him. If I’ve read about a new protocol, I’ll ask him about it. I bring in stuff I’ve read all the time, even if it seems like quackery.

    And I pray, (even though I’m not religious) that somewhere someone will give that doctor the inspiration they need to find a good treatment and better yet… a cure.

    And a little hope for you… my doctor tells me that there is now stem-cell research going on for our disease. It’s in the ‘safety’ phase… which I’m told means they have a small sample of patients that they are putting stem cells into to see if it is safe. Next, they will do research to see if it’s effective. I don’t know if you’ve seen the news saying that researchers using stem cells in heart patients are finding that with the cells, the heart is regenerating healthy cells. We need to get into those studies!

    Blessings to you. Thanks for writing.

    Like

    1. Basil Rene says:

      Thank you so much for the support and encouragement. I am a questioner, and a challenger, but for some reason, I received the news over the phone, and was stunned. I was then uncharacteristically stunned into silence when the doctor said those words and the call ended. I have an appointment today with my PCP who is a lung specialist, and who I credit with saving my life by thinking outside of the box. Together we will come up with a plan. Thanks again for visiting.
      ________________________
      Sent Via Blackberry® on AT&T

      Like

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