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    • #31734

      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.

    • #31739
      Dave
      Participant

      Devastating – Unpredictable – Misunderstood – Terminal

       

      • #31772

        Certainly an accurate description, Dave. Thanks for sharing!

      • #31823
        Elle
        Participant

        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.

        • #32129
          Christine McCann
          Participant

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

      • #32308
        Phyllis Della-Latta
        Participant

        Incurable, debilitating, fatal, underdiagnosed,

        • #32311

          Hi Phyllis,

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

      • #32329
        Jerry Genesio
        Participant

        LIMITING – BURDENSOME – CHALLENGING – COMPROMISING

    • #31748
      Christine McCann
      Participant

      Terminal. difficult, no fun.

    • #31759
      Mary Jane Wallace
      Participant

      Difficult breathing, persistence cough, difficult and terminal

      • #31774

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

        • #31824
          Elle
          Participant

          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.

        • #31873

          @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.

        • #32131
          Christine McCann
          Participant

          You need to see a pulmonologist AND A CARDIOLOGIST.

        • #32278
          Tonya Worley
          Participant

          I had to get my throat stretched.

    • #31762
      Karen Martin
      Participant

      Unpredictable, sneaky, cruel and relentless.

      • This reply was modified 7 months, 2 weeks ago by Karen Martin.
      • #31775

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

      • #31884
        Elle
        Participant

        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.

        • #32060

          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.

        • #32091
          Elle
          Participant

          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.

        • #32351
          Denise Stogdill
          Participant

          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🥰!

        • #32362

          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.

        • #32206
          Christine McCann
          Participant

          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.

    • #31765
      jin jue
      Participant

      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

    • #31766
      Rod Danner
      Participant

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

      • #31776

        Thanks for sharing Rod.

      • #32093
        Elle
        Participant

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

    • #31767
      Annette
      Participant

      Sneaky, serious, unpredictable, frustrating

    • #31782
      Chris
      Participant

      Daunting
      Repressive
      Relentless
      Exhausting

    • #31789
      Ron
      Participant

      Curse. Debilitating

       

    • #31794
      Jeff Taylor-Jackson
      Participant

      1) Depressing

      2) Horrible

      3) Tiresome

      4) Frustrating

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

      Stay positive though everyone!!

      • #31807

        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!

    • #31797
      Linda Maguire
      Participant

      Breathlessness

      Cough

      Frightening

      Overwhelming

      • #31808

        Thanks for sharing Linda. I certainly agree with you!

    • #31798
      Bert Maidment
      Participant

      Relentless cough

      Scary shortness of breath

      Overwhelming fatigue

      Life stealing no cure

      BERT

    • #31801
      Steve Dragoo
      Participant

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

      • #31810

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

    • #31805
      denise anton
      Participant

      Sad, challenging, frightening, & fatal.

      • #31811

        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.

    • #31812
      Paul B ~ Lakeland
      Participant

      Reflective
      Unknowns
      Limiting
      Mindfulness

    • #31813

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

    • #31819
      Gordon B Sandmire
      Participant

      Exhausting

      hopeful(for a cure)

      debilitating

      acceptance

       

       

      • #31874

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

    • #31852
      William Kracke
      Participant

      Lungs Turning Into Leather.

      Not really accurate but gets the general concept across.

      Bill K.

      • #31875

        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.

    • #32204
      Ann Chafin
      Participant

      Puzzling

      Energy-sapping

      Constraining

      Challenging

      • #32225

        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.

    • #32215
      Amy
      Participant

      Bewildering, frightening, unpredictable

      • #32216
        Amy
        Participant

        Oh and sucky.

        • #32224

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

    • #32252
      Terry Quinalty
      Participant

      Chronic, irreversible, ultimately fatal.

      • #32297

        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.

    • #32337
      David S
      Participant

      disappointing

      debilitating

      punishing

      cruel

      • #32338

        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.

    • #32352
      Denise Stogdill
      Participant

      UNFAIR, EXERTING, TROUBLESOME, EXASPERATING

    • #32363

      Absolutely unfair! Great words Denise, thanks for sharing!

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