My Journey with Lung Disease: Initial Diagnosis

Posted on December 09, 2019   |   
8 Comments   |   
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Written by patient and advocate John Torrence

We very much appreciate that a fellow BronchandNTM360social community member and NTM patient is willing to share his journey with us. He will take us through his initial symptoms, diagnosis, identification of a clear family connection, his experience at a well-known health center and what the future may hold. This is the first blog in a series where John will take us through his experiences with lung disease.

Torrence Death Valley Day

I cough. You cough. We all cough from time to time. Ten years ago, the coughing began, occasionally at first and soon with great frequency. I attributed this to a cold, allergies or dust from work. I took every medication in the flu and cold aisle and ate cough drops, “like they were candy,” according to my wife. My local physician attributed the cough to the same allergies, cold, etc. as I had. It did seem seasonal and by the third year I was able to start anticipating the cough.

Eventually, as for most, the cough became chronic and intolerable. I had an x-ray that showed a white line on my lung. The doctor declared Pneumonia and I was prescribed a 10-day dose of antibiotics. I had no relief and once again went to see my physician. This time I was prescribed another type of antibiotic. My exhaustion reached new levels and I was napping every afternoon, thinking I was tired due to my work schedule. My wife chalked it up to laziness. I was so physically tired from the coughing I stopped in at a clinic and insisted the doctor see me. Upon another chest x-ray, this doctor called me to come back in and to bring my wife along. I knew there was something much more serious than a cold going on inside of me.

The doctor showed us my chest x-ray that contained a white spot– a "nodule.” I learned that a nodule is anything that shows up an x-ray that doesn't belong there and has yet to be defined. The protocol is that the doctor needs to investigate until finding out whether or not it is cancer. The doctor was concerned that this was indeed a very early lung cancer.

I have never smoked anything in my life, but I have been around my share of construction and industrial dust. I began to feel guilty that I had breathed in bad dust without the proper protection and it was now catching up to me.

The doctor scheduled me for a CT scan and then a PET scan. Both came back as inconclusive. The next step was a series of sputum tests and a bronchoscopy. By this time, I had been referred to Pulmonology. The pulmonologist called in February 2012, after the sputum tests results came back to say that I had "nontuberculous mycobacterium" specifically "mycobacterium abscessus" whatever that means. I Googled it.

Things were not looking good. I was wishing that I was just the lazy husband my wife had accused me of being. Dr. Google was very unsure about my future. Something about long courses of antibiotics and possibly surgery.

I had been coughing for three years and finally had a diagnosis. Dr. Pulmonologist wanted to refer me to an infectious disease specialist (even though I was told I was not infectious) and that this new specialist would oversee my care. The next problem was that the infectious disease specialist was only in the clinic once a week and his first opening was in April. I just needed to sit with my infection for two months and wait for a plan...I had waited three years, so what would two more months be to continue the wait?!

John will continue sharing his journey with us. The next part of his story will discuss the family connection of this lung disease:

Infectious Disease doctor tells me that this is an extremely rare condition. He describes the many antibiotics I will be taking, yet all of his big words are sounding strangely familiar. My mother has had lung issues, so I call her and ask her to describe her symptoms and medications.

8 Comments



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  • Thank you for posting, I'm looking forward to reading more of his journey with NTM.
    Reply
  • This is a real page turner. Thank you so much for sharing your story.

    Reply
  • John,
    Thank you sooo much for posting, sharing your story. Most patients can relate to the long road, multiple misdiagnosis that we all go through before being accurately diagnosed and treated. I look forward to reading the next blog.:))). Have a pleasant day! Katie
    Reply
  • Thanks for sharing waiting on rest of the story.
    Reply
  • I think most of us can identify with his story. Bottom line for me, and what I keep telling people, is not to trust your doctor. I think they are put on too high a pedestal. You can't expect them to know everything but they need to set aside their over-confidence and say "I don't know" once in awhile and refer you to a specialist or at least look up the symptoms and ask more questions. They make too many assumptions. If a patient is intelligent, they need to be treated as such and not dismissed. I know it's hard when they have so little time for appointments but we depend on them and it's their responsibility. I know some people will say "of course you have to trust your doctor". I disagree. I'll only trust them when they have proven I can. We all have to do our homework to get to that point.
    Reply
    • Hello! Yes, I totally agree. We must all do our homework, learn from one another on this site , and advocate for ourselves. Seek 2nd, 3rd opinions if you get the vibe that something is not right.
      Reply
  • I finally have excellent pulmonologist and ID doctors now. If you have NTM/and or bronchiectasis, it helps to know that you might not get answers to all your questions. You'll get a lot of "maybe", "sometimes", and "possibly" answers from even the best doctors because there just aren't definitive answers to a lot of questions. These aren't common diseases with a lot of extensive research. Read what you can, as suggested on other posts, but keep in mind that everyone is different and will progress differently. Don't panic. Use this website, as it's very helpful, and know you aren't alone. Ksmiles123 always has something useful and positive to say.

    Reply
    • Kelly,
      Thank you sooo much for your kind words! Like HS Musical-We are all in this together ! The gift šŸŽ of support, empathy is huge when you are on a journey that no one close to you has traveled. We are here to assist one another in making our quality of life the best possible.
      Reply