The New Normal

Pulmonary Fibrosis

A week ago, reality bitch-slapped me — hard. My quiet world of carpools, laundry, what’s-for-dinner and the occasional annoyance of office politics exploded when I learned I have idiopathic pulmonary fibrosis.

Thankfully, IPF isn’t one of those instantly critical diagnoses like lung cancer.  Instead it’s a stealthy disease that progressively scars the lungs, making it harder and harder to pass oxygen into the blood.  At this point, I have about 50% lung capacity and I’ve started using oxygen when I’m moving around.  Room air is just fine when I’m sitting still.  Eventually that will change, and the day will come when my lungs simply can’t support me, no matter how much 02 I pump into them.  At that point, my only option will be a lung transplant.

How far off that day is, we don’t know. The progression of my IPF could be slow or fast — we’ll just have to see. But I do know that my sleepy little ramble through life is over.  For years I’ve been half-assedly thinking, planning, dreaming about what I wanted to do, who I wanted to be. The ideas were there but the will for action wasn’t. I’ve always felt like I was waiting for something — permission or a reason — to dive in.  Maybe this is it.

And so, I’m starting this blog. I originally trained as a journalist, and I remain an investigator at heart.  My plan is to share my journey through this blog — from the latest research taking place to insights in living with the disease to rants, revelations and those amazing moments I know lie ahead. I hope you’ll add your own ideas and discoveries to the conversation.

Some 200,000 people suffer from pulmonary fibrosis in the US, and it kills off nearly 40,000 a year. I hate those odds, and I plan to do what I can to swing things in our favor.  Bring it on baby.  Let’s kick some ass!

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12 thoughts on “The New Normal

  1. People you never knew were there will come out of the woods to be there for you. Through out our lives we spend so much time caring for others; being a mom, wife, friend, daughter, co-worker/boss. It’s time for you to concentrate on you and what you need. It’s okay to be selfish sometimes! Let us know what we can do for you. We are here and there for you. Sending warm thoughts across the miles! A & C

  2. Sweet friend…know that we are walking alongside you in this journey and covering each step with prayer. We are here for you and will help you with your “regimen”.

  3. I look forward to following your journey through this and I already appreciate your honesty and candor. I’m sure we’ll have many chats throughout your journey and I look forward to each one. You’ve already started the search for the holy grail within your situation and I believe you will find yourself along the way and you will amaze yourself. I look forward to hearing from you and keep in mind, I can always distract you with stories from my own journey of discovery. *hugs*

    -T-

  4. Lori,
    Hi my name is Mary Beth and you just followed me on Twitter. I’ve had pulmonary fibrosis for over 5 years and I continue to live my life to the fullest. I don’t have IPF but a different type and I know what caused mine. I’m 52 years old and have one grown son. I don’t know anything about you, your history or under what circumstances you were diagnosed. I just want to encourage you on two fronts. First don’t give up, as with any diagnosis like this there is a tendency towards despair and depression. It doesn’t have to be that way. Secondly, I would strongly recommend that if you haven’t already, you need to get yourself to a university medical center with a interstitial lung disease center. Get a thorough evaluation. It’s unusual for someone as young as you are to have IPF. If they can determine a cause, your prognosis is better. You will likely live longer and there are treatments, not cures but treatments. If you’ve already done this then disregard. I moderate an online support group for pulmonary fibrosis patients. Feel free to contact me if you wish.
    Good luck to you!
    Mary Beth

    • Hi Mary Beth,
      Thanks so much for your comment. I am 50 — so you and I are very close in age. I just underwent a lung biopsy to confirm the diagnosis. My doc says about 80% of pulmonary fibrosis diagnoses are “idiopathic”, so we have not idea what caused it. I live near St. Louis, and am in the process of trying to get on board with the pulmonary group at Barnes Jewish Hospital — that’s our big research hospital affiliated with Washington University. When and if I get to the point of transplant, that’s where I’ll go.

      I would love to learn more about your support group, so I’ll drop you an email. Thanks again for reaching out. I look forward to getting to know you.

      Lori

  5. I wanted to type “Kick IPF’s ass”, but I couldn’t say it, even in my own brain, without a lisp. So you’ll understand when I use the word ‘buttocks’, won’t you?

  6. Thanks for sharing your bravery, knowledge, and most importantly, your journey. We’ve never met, and it’s a bit unusual way to get to know each other… In this new world of technology, I’m a dinosaur. No facebook, twitter, etc. But, your brother cares deeply, so you’ve become important to me too. Audrey

    • Thanks for your support and warm words, Audrey. I look forward to meeting you face to face one day soon. In the meantime, we can share ideas, hearts and courage through this blog. Thanks, Lori

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