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    • #16003

      A wonderful forums member and I were recently discussing this, as idiopathic pulmonary fibrosis (IPF/PF) is so hard to describe to others quickly. This is especially true when you look otherwise healthy (ie. no oxygen, breathlessness, etc) and you’re trying to help others understand the seriousness of our condition.

      For the most part IPF/PF is an invisible illness, and our needs can be discredited because of how “healthy” we look. This can be very frustrating, and getting others to understand IPF quickly (ie. before they lose their attention…) is not always easy. Have you ever tried to do this? 

      Typically an “elevator speech” refers to something being described in 30 seconds or less, similar to the time it would take you to ride an elevator between a few floors, hence the name. I find describing IPF in that time-frame is nearly impossible, as there is just so much to be said. When someone asks what IPF is, usually my response (if it has to be quick and concise) is something along the lines of: “it is a life-threatening lung condition that will eventually make my lungs fail without a transplant”. 

      Do you have your own rendition of how you describe IPF/PF quickly? If so, we’d love to hear it as it can perhaps help others in the future!

      Charlene.

    • #16055
      William Kracke
      Participant

      Charlene – I usually use “IPF is a chronic, progressive scarring of the lungs that makes it harder to transfer oxygen into the blood. Sort of like my lungs are slowly turning to leather.”  Not really accurate but descriptive for understanding.  I don’t mention that it is “terminal” or “life threatening” because in my case and my age (72) a lot of other things could result in my death because my IPF is fairly stable with Esbriet.

       

      Bill K

    • #16082

      Hi Bill,

      Thanks so much for your reply on this interesting topic! I really like hearing from others about how they present their illness to others, as I find it is a tough balance of sharing too little vs. too much in a short amount of time. Your approach is definitely an easy-to-understand one, thanks for sharing how you describe IPF to others. What is the general response to that in your experience Bill? Do people tend to ask you more questions? Glad to hear your IPF is relatively stable right now with the Esbriet, I’ll keep my fingers crossed for you that this continues!

      Cheers,
      Charlene.

    • #16192
      Keith Nelson
      Participant

      Never really thought about this, so thank you for suggesting the topic. I am a newly diagnosed IPF victim. Consequently I have only family and a few close friends that have heard any input from me, regarding my affliction.

      I will give it a shot.

      On May 1 I experienced a scuba diving accident, the bends. My body did not dissipate the excess nitrogen my body absorbed when breathing compressed air. What we have discovered is that my lungs have become incapacitated to a great extent at exchanging gas. They do not off-gas carbon dioxide, nor do they absorb oxygen as normal lungs. Scaring in my lungs, identified as Idiopathic Pulmonary Fibrosis, prevents this from happening. IPF is not something you ever recover from. It is a devastating regressive malady, often destroying a person’s lungs in three to five years. There are drug therapies that have some success in retarding this progression, but not all cases. The only known “cure” is a lung transplant.

       

      (Seems we will need a very high building to actually complete this on a single elevator ride, perhaps an elevator speech, with a hold-over at a water fountain, for the conclusion.)

      Keith

      • #16234

        Hi Keith,

        Thanks so much for contributing your thoughts to this topic thread. It is a really interesting thing to think about, isn’t it? I have tried multiple times to quickly but effectively describe IPF to friends and family but its a balance I find. It’s figuring out how much/little to say in a short period of time, along with helping them understand the severity of my lung disease, because when I am not wearing my supplemental oxygen, I look pretty healthy for a 31 year old. Sounds like the approach you use so far (what you shared with us) is quite good and hopefully helps others understand the devastation that is IPF.

        Your comment about the tall building and stopping for a break at a water fountain before concluding the speech made me laugh, thanks for that 🙂 I agree, we’d have to find one of the tallest buildings and elevators that we can to perfect the speech!

        Cheers,
        Charlene.

    • #16201
      William Kracke
      Participant

      Charlene – I generally do get some more questions and I try to provide simple answers.  I also try to avoid presenting my condition as terminal (even though it is) and just say that it a progressive disease and cannot be cured.  I also tell people that I am on medication that slows the progression and that my condition has been fairly stable, so far.  I usually get the questions when I am using my POC because I am not on O2 full time , yet.  I also tell them that one of the primary symptoms is the lousy cough that I have and that the disease is not contagious.  I try to keep the discussions upbeat and casual rather than focusing on the inevitability of our condition.  And when the question comes up about whether this is terminal I sort of jokingly say “well if nothing else gets me first, this probably will” and sort of leave it at that.

       

      Bill K.

      • #16235

        Hi Bill,

        Thanks so much for your thoughts on this topic. I always love to hear from others about how they tell people in their lives about IPF. There is so much to say! I usually get questions when I am using POC as well. Do people outright ask you why you use it, or do they presume you have another type of illness? Interestingly, I always get asked if I have Cystic Fibrosis, maybe because I am in my 30s? There seems to be more awareness about CF than IPF, so I have to decline and explain IPF instead, which most people I interact with have never heard of.

        I like the clarification you provide that the cough is a symptom of the disease and not contagious. I am going to start using this too, as people give me terrible looks when I am coughing, as if to say “how dare you expose me to that”. Your approach will help me with that I think!

        Thanks again for sharing, I appreciate hearing your thoughts on this topic.

        Take care,
        Charlene.

    • #16205
      Keith Nelson
      Participant

      Thanks Bill, insightful.

      All the best,

      Keith

    • #16218
      paula
      Participant

      I can only think of when I discussed this with the hospice people I work with. This was before I went on oxygen

      Many knew about the diagnosis of the IPF but like myself did not look at it as something really bad. I looked good, was not having too much trouble breathing. But then I had an episode where the treating pulmonary doctor put it in perspective for me.

      So I told them, that at that time I was holding my own and at any given time the IPF could go whacky and start getting very aggressive. At some point I will have to be on oxygen and need a transplant. I then told them that I was not looking for sympathy I just wanted to keep them in the loop and for them to know that if I said I could not do a visit or something it was simply because I was having a bad day.

      The group was awesome. One guy, took my hand and said “We are here for you.” They all agreed and I thanked them.

      • #16236

        Hi Paula,

        So nice to hear from you, and my apologies: I know I still owe you and Ray an email back! 🙂

        Thanks for sharing your story with us about this topic, very reassuring that the folks you were working with were so supportive. I take a very similar approach with my family, especially when I am looking good – I think they sometimes forget that I have IPF. However, the other times when I am on my oxygen and struggling with fatigue, they step up to help which I appreciate. Really glad you were able to be so honest with the hospice crew and that they were supportive of you.

        I’m looking forward to writing you back and hearing an update on how things are. Stay tuned!
        Charlene.

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