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    • #27218
      Charlene Beck
      Participant

      i asked for all the tests as PCP did not feel a need….. I just had chest lung biopsy-  awaitn results but appears to be IPF family genetics– I am scared.   prognosis scares me.  help

    • #27220
      Renee
      Participant

      I too was just diagnosed with IPF. I have 2 siblings that had a definite diagnosis of IPF. My doctor says its nit genetic, but still makes me wonder about 3 of 6  developing this horrible disease.  They both only lived less than 3 years after the diagnosis.

       

      • #27279

        Hi @renee

        Thanks for writing though I’m really sorry to hear of your IPF diagnosis, and your siblings experience with this cruel disease. Like you, I think it seems too unusual for there not to be a real genetic/familial link that MDs are aware of. I’m hoping to better understand this link and the genetic component and am brainstorming a couple of ways how to do that with other patients who now have a diagnosis and their siblings did as well. However, they too have been told there is no link. If I host something like a focus group to better understand this with a company who is also interested in this, might you want to join us?

        Charlene.

    • #27228
      Mark Koziol
      Participant

      Hello Charlene, I’m hoping you are negative for ipf. If the diagnosis is ipf, please ask for an immediate referral to a pulmonologist. Please get back with us when you receive your diagnosis. Mark

    • #27243

      @chyna

      Charlene,  I too hope that you are negative for ipf but if it is, as Mark stated, get a referral to a pulmonologist especially one that specializes in Pulmonary Fibrosis.

      Renee,  I am sorry that you too have been diagnosed with ipf.  My husband’s dad as well as his grandfather both died with lung issues that I am sure that if it were today, it would most likely be ipf.   Please do not assume that like your siblings, it is a short life span.  As we have learned with my husband,  3-5 years is not the case anymore.  My husband was diagnosed in 2014 and he is doing well.

       

      God Bless

      • This reply was modified 5 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #27271
      Sharon MacMillan
      Participant

      My mom had interstitial lung disease. She suffered from the effects of long-term steroid usage.
      I was diagnosed with mild IPF last June through cat scan at age 71. I wish I could offer comfort to the 61 year old.
      I didn’t feel concern until I went out on my usual fast-paced walk with elevated blood pressure and couldn’t get my breathe after having COVID. I went out again in cold weather and again couldn’t get my breathe without discomfort. Dr ordered X-ray which revealed stable lungs with underlying IPF. New world for me. I don’t want to be making up problems that aren’t there.  I so feel empathy which each of you in your life’s journey with IPF.

      • This reply was modified 5 months, 2 weeks ago by Charlene Marshall. Reason: formatting to remove code
      • #27275

        Hi Sharon,

        Thanks for sharing a bit of your story with us, though I’m really sorry to hear of your Mom’s struggles and your subsequent IPF diagnosis. Sounds like COVID was the cause of getting your diagnosis, I hope you’ve recovered okay from this cruel virus and I hope you remain stable for a long time!
        Feel free to write anytime.
        Charlene.

    • #27326
      gaston
      Participant

      @chyna @deniseanton

      Dear, my IPF is family and my background is that my mother had this disease and my older brother. As soon as you have the diagnosis, my suggestion is to face this with a good pulmonologist and attend to your diet, exercise and other things that help you. My diagnosis was in 2010 and although now it is more advanced, I still believe that I can maintain my health. My note is one of optimism to face this disease.

      • This reply was modified 5 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #27405
      Charlene Beck
      Participant

      thank you for reaching out.   i appreciate your words very much.  I am thin and walk about 4 miles per day.  live in rural area and not much choice on Pulmonologist.   am getting my biopsy diagnoses this wk and med?

      do u suggest going on meds asap ?

      • #27417
        Vishal
        Participant

        Hey Charlene,

        I hope you don’t have it. But in the case that you do, immediately get a pulmonologist (they’re called respirologists in Canada) referral and work with him to learn as much as possible about the disease, available medications, diet and exercise. My dad has IPF and he’s at the end stage now – it’s an awful disease but the important thing will be to find ways to stay in the present and cope with it one day at a time.

        Wishing you the best,

        Vishal

      • #27418
        Vishal
        Participant

        Studies have shown that two medications: Ofev and Esbriet, slow the progression of the disease in the lungs. And they are more effective at earlier stages of the disease. My dad was Esbriet for 2 years – he got onto it about 6 months after diagnosis. He still progressed steadily and over the last few weeks he deteriorated a lot. So we decided that the medication was no longer helping and discontinued it. The side effects are all GI related – loss of appetite (and loss of weight), diarrhea, upset stomach, nausea, etc. They can be pretty bad and are the main reason for why most ppl choose to discontinue treatment with these medications.

    • #27419
      Charlene Beck
      Participant

      yes, i do have IPF> yes i have a pulmonologist — I have had an open chest biopsy/lung biopsy. thank you for reaching out to me. I have fears of the prognosis and the progression.
      I walk 4 miles per day uphill. (treadmill) and am thin./ My mom died of it and my brother has IPF also.
      I seems sad to think of such a poor prognosis…. how long has your dad had it and how old is he? has he had to go into the hospital? often? please advise and thanks again for helping me. this is so helpful

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