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  • Top 4 Words You’d Use to Describe IPF

    Posted by Charlene Marshall on April 20, 2022 at 7:13 am

    Hi forums family:

    Sorry for my absence the last few weeks! I’ve been adjusting to the news of a promotion at work which feels really scary but also exciting. I wrote a column about it, which will be published tomorrow (Thursday April 21) and as always, will share it here for you to have a read through. I’ve also been grieving the loss of another dear friend to IPF – it just never gets easier.

    One of my “older” columns has had a lot of views and comments in the last few weeks, which I have appreciated reading and responding to. Its called The Top 4 Words I Use to Describe IPF. I’m curious to hear your thoughts on the words I’d use, but more importantly: what are the top 4 words you’d use to describe this disease? 

    I look forward to hearing your thoughts!
    Sincerely,
    Char.

    Charlene Marshall replied 2 years ago 26 Members · 58 Replies
  • 58 Replies
  • Dave

    Member
    April 20, 2022 at 6:53 pm

    Devastating – Unpredictable – Misunderstood – Terminal

     

    • Charlene Marshall

      Member
      April 23, 2022 at 8:52 am

      Certainly an accurate description, Dave. Thanks for sharing!

    • Elle

      Member
      April 27, 2022 at 4:05 pm

      I was so traumatized, because my doctor who is also a Pulmonologist never told me that, I had Pulmonary Fibrosis. so something told me to ask for the results of my Ct can and when I opened the letter , I saw on my results that, I had :”pulmonary Fibrosis.” Now it has spread to my right Lung. So I am one of the unlucky one in which my PF is getting worse every day that goes by. I feel, alone, Lost ad helpless. These are my four words.

      • Christine McCann

        Member
        May 19, 2022 at 2:24 pm

        Ask your pulmonologist to put you on Meds to slow the progression. You are not alone.

    • Phyllis Della-Latta

      Member
      June 7, 2022 at 6:42 pm

      Incurable, debilitating, fatal, underdiagnosed,

      • Charlene Marshall

        Member
        June 7, 2022 at 9:13 pm

        Hi Phyllis,

        Underdiagnosed is most certainly (and unfortunately!) a good word used to describe IPF. Thanks for sharing.
        Char.

    • Jerry Genesio

      Member
      June 9, 2022 at 5:25 pm

      LIMITING – BURDENSOME – CHALLENGING – COMPROMISING

  • Christine McCann

    Member
    April 21, 2022 at 11:09 am

    Terminal. difficult, no fun.

    • Charlene Marshall

      Member
      April 23, 2022 at 8:52 am

      No fun for sure Christine. Thanks for sharing!

  • Mary Jane Wallace

    Member
    April 21, 2022 at 5:29 pm

    Difficult breathing, persistence cough, difficult and terminal

    • Charlene Marshall

      Member
      April 23, 2022 at 8:52 am

      Thanks for sharing Mary Jane, I definitely agree with your word choices!

      • Elle

        Member
        April 27, 2022 at 4:14 pm

        I feel the same way. But, if I may I would like to make a comment because I am curious to know if anyone else has similar symptoms to mine. I have developed severe  Gerd, so now even if i want to eat, nothing goes down. I vomit almost every single day. I feel unbearable and excruciating pain in my lungs / chest, because I keep cough for hours and hours. My legs are very swollen, I have a constant nasal drip. I feel tired every single day, Also most of the time, I can not sleep due to the pain, I am in. i have clubbing in both hands. I lose oxygen to my brain. So what is happening to me is very upsetting, In one of my many falls I fractured my nose and on the most recent fall I damaged my right knee. so, now I am in crutches. My doctor used to give me Tylenol #3 with codeine, and I have to be honest it helps tremendously with my unbearable pain, But now it is NOt just my lungs that are killing me but my knee feels as if it’s going to fall off.

      • Charlene Marshall

        Member
        April 29, 2022 at 8:10 am

        @ellebleu

        Hi Elle,

        Thanks for sharing your thoughts with us and contributing to this thread. I’m so sorry to hear of your experience with GERD too, how awful. Unfortunately, this is a common thing a lot of people with IPF deal with, and there have been some good forum discussions about it. If you look on the right hand side of the screen you’ll see a search bar. In that, if you start typing GERD or acid reflux, those conversations should appear for you to have a read through. I know its a pesky thing that lots of people deal with sadly! I appreciate your sharing and glad you connected with the forums.

        Char.

      • Christine McCann

        Member
        May 19, 2022 at 2:27 pm

        You need to see a pulmonologist AND A CARDIOLOGIST.

      • Tonya Worley

        Member
        June 1, 2022 at 4:49 pm

        I had to get my throat stretched.

  • Karen Martin

    Member
    April 22, 2022 at 10:01 am

    Unpredictable, sneaky, cruel and relentless.

    • Charlene Marshall

      Member
      April 23, 2022 at 8:53 am

      Cruel and relentless are words I often use to describe IPF in my columns as well Karen. Thanks for sharing.

    • Elle

      Member
      April 29, 2022 at 3:13 pm

      Hi Char ,

      Thanks for repkying to me yes it’s not just the gerd, it’s the consistent high blood pressure, I am constantly getting dizzy which is due to lack of oxygen to my brain so, I am always falling. As, I have mentioned, I hurt my right knee badly. But , I am curious if anyone else has a pulmonologist that refuses to give cough syrup but prescription. My Gerd obviously got worse because of taking over the counter cough syrup. And I know a few that are given pain meds because as soon as I start coughing for eight hours straight the pain either it’s my back but I would say my lungs is just unbearable. JUst wanted some insight if anyone else with pulmonary fibrosis feels this much pain. Thank you. I have had already 4 different Pulmonologist’s and they are just horrible. The last one I had over the phone she never met me never heard my lungs with a stethoscope and insists I am coughing because of Scoliosis. So, I went to the Orthopedist and she told me no you have pulmonary fibrosis and the lungs are the largest organs and scoliosis is “the spine.” One thing has nothing to do with the other.

      • Charlene Marshall

        Member
        May 15, 2022 at 11:44 am

        Hi @ellebleu

        Sorry to hear of the frustrations and pain you’re navigating. It seems unlikely that a 5th pulmonologist will give you answers that 4 already haven’t, but you can always consider a second opinion. I know some people who are prescribed pain meds, but its not common based on my understanding for those of us with IPF/PF. Not sure if you’ve explored this yet, but it may be worth contacting a Rheumatologist. Oftentimes lung conditions can be connected to autoimmune diseases… may be worth a try? Goodluck!
        Char.

      • Elle

        Member
        May 17, 2022 at 8:22 pm

        Hi Char thanks for writing back to me. Well from my end I know quite a few people especially when they are , I guess I don’t at the end of the line. I realize this is a terminal illness, and I truly hate how Doctors just don’t be more open on what to expect. I actually have seen many people mention here that they taCough Syrup like Promethazine Dm, and they receive pain killers because well the pstient has to be comfortable. I will probably see a rheumatologist but not here in corny New Jersey because I am moving back to Florida. I should be there already , but , I took a turn for the worse last week by the way. So , I feel that my pulmonary fibrosis has gotten a lot worse. Some people can go longer without “problems.” Unfortunately, I am not one of them. The reason why I saw 4 pulmonologist was because the first pulmonologist was also my doctor for 5 years and neglectfully didn’t warn me that I had Pulmonary Fibrosis. So I went for a second opinion. He told me that iit was a shame that he never told me anything that is medical negligence. And now I first only had it on my left lung and now it has spread top my right lung and it’s worse on the rt side, SO yes, I am so pissed but more hurt and disappointed.  But he retired the 3 rd is super far away for me and the 4th well she was a complete idiot, I told you it was only a phone consultation. First she said I had a large heart went to the Cardiologist he said no way, you are fine, it’s your lungs. Then she invents that’s it my scoliosis. Nope I had that since I was 12 it never caused me pain I was a competitive swimmer while in College when I lived in Brazil. Although , I am an American. and I did see a chiropractor and it was 76% and now it’s only 45%. So it’s  a lot better. It’s these doctor’s here. The thing is , I have to drive from here to Florida, I have my elderly Mom and my 4 pets. So, They are my responsibility , I want to make sure , I get my Mom out of here.  Sorry it took me so long to write. I barely get out of bed nowada

        ys. So yes the pain is excruciating. I don’t know about you guys but , I can’t deal with this pain.

      • Denise Stogdill

        Member
        June 14, 2022 at 5:46 pm

        I suffer from chronic pain.  I have fibromyalgia, rheumatoid arthritis, osteoarthritis and IPF.  I have a pain management doctor and he manages my pain with pain meds, topical pain lotions and lidocaine patches.  He is the best doctor I have had.  Find yourself a pain management doctor that will work with you to understand your pain. I hope this helps you.  God Bless????!

      • Charlene Marshall

        Member
        June 16, 2022 at 8:32 pm

        Thank you for sharing Denise, it’s always refreshing to hear of positive experiences with physicians and how they can help us on our journey. Sorry to hear you’re dealing with pain, but glad you have a good doctor in your corner.

        Take care,
        Char.

      • Christine McCann

        Member
        May 25, 2022 at 2:55 pm

        Elle, I find your difficulties with your pulmonologist very disturbing. If your IPF is bad you don’t want to live in Florida , too hot,& humid for anyone with lung issues . You need to find some better Dr.’s. People like us need to live at as low an elevation as possible with very moderate weather IE. not too hot , not too cold,. there are med’s that slow down the progression of this disease and a lot of support and info from the providers of Esbriet, CVS specialty pharmacy (not the regular CVS pharmacy) and 1st class medical thrive web sites, there are classes and webinars. Gerd can be one of the causes of IPF, Probiotics are necessary, you can get them over the counter but pick a good one, If you had a good Pulmonologist he/she would be advising you of all of this. Try talking to a CVS specialty Pharmacist or better yet google Esbriet, lots of info there. Make some demands on your Dr. if you can’t ind the results you need. Good luck you don’t need to suffer more than what this condition already brings with it.

  • jin jue

    Member
    April 22, 2022 at 10:09 am

    Outside of my immediate family, I do not tell others I have IDF or a terminal condition.  So my answers may not be what you are looking for.  I explain my condition when exercising or playing sports

    1) Extreme shortness of breath

    2) bad lungs

    3) Just need to rest to recover

    4) Coughing due to lung problem

  • Rod Danner

    Member
    April 22, 2022 at 11:02 am

    Smothering, progressive, incurable, and terminal.  It’s certainly not a pretty picture.

    • Charlene Marshall

      Member
      April 23, 2022 at 8:53 am

      Thanks for sharing Rod.

    • Elle

      Member
      May 18, 2022 at 1:11 am

      Rod , I couldn’t of said it better….Thank you.

  • Annette

    Member
    April 22, 2022 at 2:13 pm

    Sneaky, serious, unpredictable, frustrating

    • Charlene Marshall

      Member
      April 23, 2022 at 8:53 am

      Definitely frustrating! Thanks for sharing, Annette.

  • Chris

    Member
    April 23, 2022 at 5:24 pm

    Daunting
    Repressive
    Relentless
    Exhausting

  • Ron

    Member
    April 25, 2022 at 2:14 pm

    Curse. Debilitating

     

  • Jeff Taylor-Jackson

    Member
    April 26, 2022 at 9:19 am

    1) Depressing

    2) Horrible

    3) Tiresome

    4) Frustrating

    I added (4) because I dont see any cures on the horizon.

    Stay positive though everyone!!

    • Charlene Marshall

      Member
      April 26, 2022 at 9:05 pm

      Thanks for sharing your thoughts with us, Jeff. So important to stay positive as you say and I am watching for a cure on the horizon as well. Too many people have suffered from this damn illness!

  • Linda Maguire

    Member
    April 26, 2022 at 4:12 pm

    Breathlessness

    Cough

    Frightening

    Overwhelming

    • Charlene Marshall

      Member
      April 26, 2022 at 9:06 pm

      Thanks for sharing Linda. I certainly agree with you!

  • Bert Maidment

    Member
    April 26, 2022 at 4:17 pm

    Relentless cough

    Scary shortness of breath

    Overwhelming fatigue

    Life stealing no cure

    BERT

    • Charlene Marshall

      Member
      April 26, 2022 at 9:06 pm

      Thanks for sharing your thoughts with us Bert.

  • Steve Dragoo

    Member
    April 26, 2022 at 6:26 pm

    Mine are: Just another thing. (Oh, wait that’s only 3 words…)

    • Charlene Marshall

      Member
      April 26, 2022 at 9:07 pm

      Love your attitude about this disease my dear friend, Steve. We have a lot to learn from you!
      Hugs,
      Char.

  • denise anton

    Member
    April 26, 2022 at 8:45 pm

    Sad, challenging, frightening, & fatal.

    • Charlene Marshall

      Member
      April 26, 2022 at 9:07 pm

      Certainly agree with your choice of words Denise. Thank you for taking the time to share with us. Know we’re here for you!
      Char.

  • Paul B ~ Lakeland

    Member
    April 26, 2022 at 9:11 pm

    Reflective
    Unknowns
    Limiting
    Mindfulness

  • Charlene Marshall

    Member
    April 26, 2022 at 9:17 pm

    Thanks for sharing your top 4 words with us, Paul!

  • Gordon B Sandmire

    Member
    April 27, 2022 at 1:20 pm

    Exhausting

    hopeful(for a cure)

    debilitating

    acceptance

     

     

    • Charlene Marshall

      Member
      April 29, 2022 at 8:10 am

      Thanks for sharing your 4 words with us, Gordon! I too am hopeful (for a cure). Take care, Char.

  • William Kracke

    Member
    April 28, 2022 at 3:15 pm

    Lungs Turning Into Leather.

    Not really accurate but gets the general concept across.

    Bill K.

    • Charlene Marshall

      Member
      April 29, 2022 at 8:11 am

      Thanks for sharing your thoughts with us William! That is an easy visual for others to understand how difficult this disease is for us.

      Char.

  • Ann Chafin

    Member
    May 25, 2022 at 2:17 pm

    Puzzling

    Energy-sapping

    Constraining

    Challenging

    • Charlene Marshall

      Member
      May 29, 2022 at 8:06 am

      Couldn’t agree more with your word choices, Ann. Thanks for taking the time to write us and contribute to this thread.
      Take care,
      Char.

  • Amy

    Member
    May 26, 2022 at 4:59 pm

    Bewildering, frightening, unpredictable

    • Amy

      Member
      May 26, 2022 at 5:00 pm

      Oh and sucky.

      • Charlene Marshall

        Member
        May 29, 2022 at 8:05 am

        Great word choices Amy, I’d certainly agree with you!
        Char.

  • Terry Quinalty

    Member
    May 31, 2022 at 7:15 pm

    Chronic, irreversible, ultimately fatal.

    • Charlene Marshall

      Member
      June 5, 2022 at 9:57 am

      Good words, Terry! Hopefully soon we can remove the “ultimately fatal” descriptor for IPF because a cure will be found. I’m just praying for that day!
      Take care,
      Char.

  • Duty-Dave

    Member
    June 12, 2022 at 8:44 am

    disappointing

    debilitating

    punishing

    cruel

    • Charlene Marshall

      Member
      June 12, 2022 at 10:23 am

      Hi David,

      Thanks for contributing your words to this topic thread. Cruel is one word  I often use to describe IPF, so I certainly agree with you! Thanks for sharing.

      Char.

  • Denise Stogdill

    Member
    June 14, 2022 at 5:48 pm

    UNFAIR, EXERTING, TROUBLESOME, EXASPERATING

  • Charlene Marshall

    Member
    June 16, 2022 at 8:32 pm

    Absolutely unfair! Great words Denise, thanks for sharing!

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