Pulmonary Fibrosis and Me

Time for some sobering talk. A number of months ago, I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF), which is a scarring and thickening of the tissue around the lungs’ alveoli, cause unknown. The main symptom is shortness of breath, with cough. It occurs mainly in older people, and it only ever gets worse, not better. Some people live with it for a long time; others, not so long. It’s a disease that can kill you, and I’d never even heard of it until I got it. The only “cure” is a lung transplant.

I wasn’t too worried at first, because my shortness of breath was fairly mild, and I seemed to be stable. In the last couple of months, though, my shortness of breath has gotten a little worse, and I am now taking one of the two medications that are available to try to slow the process. They have side effects, of course. I have an excellent pulmonologist, and also an appointment with a clinic at one of the leading Boston hospitals that specializes in IPF and other interstitial lung diseases. This is all to the good, but doesn’t change the fact that I have gone from being pretty dang healthy to having a life-threatening illness. That’ll sober you up…

I am upping my exercise routine to keep my lungs and body in general in the best shape possible. For that to work, I need supplemental oxygen, and that’s supposed to be arriving tomorrow. I will soon be walking the dogs with a little tank slung over my back. Yay. In the meantime, I take breaks between sets of pushups and squats, etc., and pant and wait for the numbers to go back up on my pulse oximeter.

My secret hope for a silver lining is that once I have more O2 flowing in my brain, maybe some of the creative writing blocks that have been troubling me will give way in the face of oxygen. I can hope. Meanwhile, prayers and healing thoughts would be much appreciated. I hope this will be a long story to tell, but only the future knows for sure.

 

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20 Responses

  1. Richard J Bowker
    | Reply

    Oh dear. Unitarian thoughts and prayers are headed your way!

    • Norman Bendroth
      | Reply

      Oh Jeff, I’m so sorry. Getting old(er) sucks. I found out recently that I have arthritis in my left hip. Prayers ascend as you beat back this disease. Love to Allyson and the family.

  2. Jeffrey A. Carver
    | Reply

    Thanks, Rich!

  3. Jim Macano
    | Reply

    Definitely you are in my thoughts and prayers. I am counting on you to live a very long life and writing many more great books.

  4. Frances B Giuffre
    | Reply

    I’m not happy to hear this, Jeff, but I am sending you lots and lots of healing thoughts and prayers. I want you to live long and prosper, my friend. Fran and Theo tha cat

    • Jeffrey A. Carver
      | Reply

      Thank you, Fran and Theo!

      • Jan Wiles
        | Reply

        Oh, man, that absolutely STINKS!

        Wishing and hoping for you to have the best possible outcome

  5. Marya S Outterson
    | Reply

    Thanks for sharing, Jeff. Oh my, that’s a lot on your plate! Kevin and I will certainly pray for medical wisdom, healing, and new writing breakthroughs. Sending love!

  6. Deborah J Ross
    | Reply

    I’m so sorry to hear this, and I applaud your attitude. Oxygen is magical brain-stuff. I assume your pulmonologist has talked to you about the drugs that can slow the progression of the disease. They weren’t available when the two people I know who had IPF were diagnosed. You’ll be in my thoughts, my friend.

    • Jeffrey A. Carver
      | Reply

      Thanks, Deborah! Yes, I am on one of the two drugs, working my way up in dosage. It was making me feel tired, so I backed off a bit, and am creeping back up. I am now listening to the lulling puffs of the just-delivered O2 concentrator, as it slowly flushes the chemical smell out of the green tubing that came with it. (You would think that health-care products wouldn’t contain phthalates, wouldn’t you? You’d be wrong.)

      • Virginia
        | Reply

        Jeff,
        You are surrounded by some of the best pulmonologists in the world. If they have not already offered, ask them about Clinical Trials. Please call me if I can help.
        Ginny

        • Jeffrey A. Carver
          | Reply

          Thank, Ginny. I’ve an appt at the Brigham ILD clinic in October. Will definitely ask about clinical trials.

  7. Lis Carey
    | Reply

    Not sure I even have a train of thought, but I hope treatment goes well, and that medicine makes rapid progress on this.

  8. victoriajanssen
    | Reply

    I’m sorry to hear this, but glad you’re getting excellent care. I’ll keep you and Allysen in my thoughts.

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