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  • Biggest piece of advice for a new IPF patient

    Posted by Charlene Marshall on May 14, 2024 at 10:15 am

    Recently I celebrated my 8th anniversary diagnosis of IPF. I don’t want to say ‘celebrated’; as a diagnosis of a life-threatening lung disease is nothing to celebrate so let me rephrase: I acknowledged my 8th anniversary of being told I have IPF. I wrote about it in a column called: Looking back on the 8 years that followed my IPF diagnosis.

    Over the years I’ve been privileged to be interviewed by various PF agencies, both via video and audio. Nearly every time I’m asked the following question, “What is the biggest piece of advice you’d give to a new IPF patient?” I’ve been thinking of this a lot as I surpass 8 years of living with this disease and my answer never wavers: ignore the 3-5 year prognosis that can be found online when you google IPF! 

    As fellow IPF patients, what advice would you give to someone newly diagnosed with this disease?

    Heather1 replied 1 month ago 6 Members · 5 Replies
  • 5 Replies
  • Temple Mayo

    Member
    May 14, 2024 at 2:36 pm

    Hi Charlene and thanks for all you do to keep the many coversations going. My advice, only based on my experience, is to get treated by a pulmonologist at a teaching hospital if possible. Those docs are expected to be up-to-date on the latest treatment. My first pulmo decided it was best to “wait and see”, after my diagnosis, which was the standard in years past. Not anymore. I missed two years od anti-fibrotic medication to “wait and see.”

    • Boonie

      Member
      May 14, 2024 at 10:07 pm

      Excellent advice! My husband has DrGanesh Raghu at UW Hospital in Seattle! He is considered the international expert on IPF and told us the sooner the better with OFEV or Espiernt )sp! So far 8 years and no supplemental oxygen !!!

  • Bruce F.

    Member
    May 14, 2024 at 3:09 pm

    I agree with temple-mayo!

    I have been on OFEV since my diagnosis two years ago. I was diagnosed early, and still have relatively healthy lungs. I have had to learn to give my self latitude with the medicine. There are some days and some situations when it makes more sense to skip doses, and I am trying to be more forgiving with myself about my need for OFEV breaks. Of course, everyone should take their meds as directed by their pulmonologist—but I have found it helpful to talk with my doc about what to do when the medicine is making me feel bad.

  • JSR

    Member
    May 16, 2024 at 9:34 pm

    My best recommendations are use smart watch technology. I realized that I had low oxygenation because of my smart watch. Go to the best pulmonologist you can find at a lung center if possible. Get proper testing, treatment, and go for as much pulmonary therapy as you can get. It really helps. Getting the diagnosis is an tough emotional kick in the gut, but ask lots of questions and do not give up hope. Take back your power and set yourself a goal. I plan to see all my grandkids graduate from high school at the very least. Focus on that goal.

  • Heather1

    Member
    May 21, 2024 at 6:51 pm

    All great posts. I have a friend who got a motor neurone disease diagnosis 17 YEARS AGO. Now in her 80’s and still thriving. She has so often said that it was the best thing to happen in her busy life as a doctor – completely changed her perspectives for the BETTER.

    For me diagnosis and realisation that I had this for at least five years prior already means I reset the investment of the only thing I can really control, my psychological energy. Living is a wonderful experience. Too many, who draw breath for a lifetime just like all of us, never get to love the life they live.

    Secondary advice, get off alcohol, which is toxic to the mind, body and spirit. It is destructive at the cellular level. Neither our mind, body nor our spirit, which are all integrated, needs to take in toxicity.

    And do what you love to do! I am a psychoanalyst, and will work for all of my ‘forever’. It feeds me, just like others have lent themselves to caring for and about MY life. This helps people find acceptance, meaning and peace, whatever they have met on their journey of knowing their own precious and unique being. Having a purpose and meaning is gold. Dig it!

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