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    • #22949

      When diagnosed with IPF four years ago, Charlene Marshall regularly questioned what exposures she may have had that led to the development of IPF. To her knowledge, she was never exposed to anything of concern, but knows that exposure to bacteria from external or environmental factors is often out of our control, so she’s left to ponder the question: why was she diagnosed with IPF, a fatal lung disease, as a young adult? 

      Although she knows she will never likely have satisfactory answers, Charlene often thinks about what may have caused her development of IPF. Since being diagnosed with IPF/PF, do you ever question why or how you developed this disease? Were you ever told it was linked to something in your childhood?

       

    • #22952
      Thom
      Participant

      I was a self employed ornamental iron worker for over 54 years.  I worked with my dad, my dad worked for his dad, and my son, 44 worked with me.  My son shows no sign of IPF, my father died of pancreatic cancer,  his father heart failure. At a very old age. The closed indoor environment was terrible.  I never gave it a second thought.  Welding fumes and smoke like heavy fog.  Metals of all kinds were constantly airborne, heavy dirt and dust everywhere.  For what it’s worth, I actually had a very clean shop!  Over the years and still today I stop to see others in my trade, and I’m amazed that anyone can work under such conditions.   Its anyone’s guess if they will eventually get the disease.  None of my employees have it, my dad didnt, so far my son appears fine.  I worked with asbestos, at times covering my body to shield me from fire and sparks, so did my father.  All my tests show no sign of asbestos, not one.

      How can this be possible?  That’s where the IDIOPATHIC come in I suppose.   I was diagnosed by a team of doctors at Yale, also by 2 local pulmonologist.  All said I have IPF.  I also discovered a first cousin died from the disease, he worked 40 years for The Bell System in Manhattan.

      So, what’s the answer?  Who the hell knows!  Someday I’m sure there will be an answer.   I often wonder at times why a mother carrying a child for 9 months and the child is stillborn.   No answers, but lots of questions.

      When I was diagnosed I was told I’m in advanced stage, perhaps 1 year, 18 months.  That was about 16 months ago.  Honestly, I feel fine.  I’m short of breath, I never changed my diet, and I’m living as I did for the past 71 years.  I see my doctor 1 to 2 times a week, hes surprised that I’ve not gone downhill.  When he does the PFT testing it’s usually better than last one.

      I do have a hernia that’s keeping me down, and cant find a surgeon that will take me.  They say the risk is too high.  I’m sure I’ll find one soon.

      Anyway that’s where I am.  To Charlene and all the others my very best to all of you.

      Thom

       

       

      .

    • #22954
      Bob
      Participant

      When you read the word “Idiopathic” for your disease it’s bound to raise questions in your mind.

      In my case, diagnosis at age 75 (I thought, as I was becoming short of breath, that I needed a new heart valve !) and now coming up to age 80 I think that my then acid reflux on a daily basis may have triggered it. Since diagnosis I have been taking one of the proton pump inhibitors that have stopped the reflux but obviously not cured the pulmonary problem.

      I only know of three friends with PF, two of whom were pilots like me and one a female in business who died from complications at age 87 years. None of them, or myself, knew of any family history of IPF.

      So in my case…possibly genetic and then exacerbated by acid reflux?

      Bob

    • #22956
      Connie Lum
      Participant

      I retired in August 2017 after working in the neonatal intensive care unit for 35 years. Exposure to numerous xrays taken for my patients. We either moved away from the bedside or wore a protective apron. There were many other exposures. My parents smoked for years. My dad was diagnosed with COPD (could this have beeen IPF?) he ended up on oxygen and had a chronic cough. I have 2 older sisters and 2 younger brothers. One brother was diagnosed with IPF in April 2018 and went downhill quickly after contracting rhinovirus and had a bilateral lung transplant July 2018, he is currently doing well. My other brother also has it requiring oxygen during activity, he too has a cough, he thought it was allergies until we all had to get tested after my brother’s transplant. I am active walking 3-5 miles a day. I have no symptoms and taking Esbriet. My sisters are negative for the disease.  It’s more common in males so why do I have it?Who knows. We were all exposed to second hand smoke, the 3 youngest had less exposure than the sisters. One sister and the brother who received the lung transplant are ex smokers. I am the most active. I can’t find a common link. That’s just how it is. I intend to continue my life as I always have, I’m in a clinical trial. There may be no answer just LIVE!!! Everyday is precious.

    • #22959
      john sliwinski
      Participant

      Who knows like others have said. I worked in a steel mill for a few summers while in college, I smoked and stopped. My cause was GERD. Acid reflux in the night and all I thought it was just heart burn and took an antacid. My local pulmonologist said I had  2-5 years left but on second opinion at Penn in Philly I was told 10+ years. I am 72 years old. I too am starting a clinical trial in March. Maybe there is hope for all of us. Just keep doing what you can and never stop exercising since that helps the lungs and keeps them stretched to avoid more scarring..

    • #22963
      Mark Koziol
      Keymaster

      Hello John, you have the perfect attitude. Your attitude is amazing! Keep doing what you do! Keep exercising and keep living your life! Best wishes, Mark

       

    • #22965
      Mark Koziol
      Keymaster

      Hello Connie, you have an amazing attitude. You are so right, life is precious. This disease is devastating to families as you can attest. I would love to bottle up your spunk and spread it around the world. Please keep walking and staying physically active. I believe your regimen is helping you immensely. Take care and keep living, Mark

    • #22967
      Mark Koziol
      Keymaster

      @bob-osborne

      Hello Bob, GERD certainly is a cause of fibrosis. I hope you are doing well. What I find amazing is that you know of three others who have the disease. I didn’t communicate with other patients until I was being treated. Thank you for sharing your story. Best wishes, Mark.

    • #22988

      Hi Thom,

      Thanks so much for writing and sharing a bit of your experience pertaining to this topic. Ultimately, I don’t think I’ll ever really understand why I ended up with IPF, but it is always helpful to hear others’ experiences. With your cousin having IPF, do you think there is any familial link? It is unlikely based on it being extended relative as opposed to immediate but hearing ‘idiopathic’ can be very frustrating when you’re someone (like me) who wants answers. Thanks for sharing your experience, and I hope you continue to feel as well as possible!
      Charlene.

    • #22996
      Thom
      Participant

      Hello Charlene.  It’s always nice to hear from you.

      As for my cousin passing from IPF, I’m convinced hes the genetic link for me.   Unfortunately as most everyone, families become scattered.   I still have several relatives on the west coast but I can find them.

      Just do what you know to take care of yourself, there in nothing that any of us can.  One thing for certain is the help and insight this web site provides.

      Take care.   Thom

    • #22999
      John Kane
      Participant

      I was diagnosed with IPF last June. My father died of COPD/ emphysema and my mother did also, I was told. Both were heavy smokers. Last week, I found my mother’s death certificate which I had never seen before. IPF was listed as her cause of death.
      Knowing what I know now about this disease, I am amazed that she had it. Never saw her near any oxygen except on her death bed. So, now I know where this came from…

    • #23002
      Mark Koziol
      Keymaster

      Hello John, your mother sounds like an amazing woman. She probably suffered in silence as mothers do. I’m sorry your mom had to endure this disease. Take care, mark.

    • #23003
      john styles
      Participant

      Gerd, feathers, mold, heredity. I think it can be a combination or to much exposure. I think when the lungs get to much exposure they get scared.  Gas from feathers or feather comforters and pillows or gerd can be contributing factor, living with mold can be an issue. I think when we get to much exposure we get IPF.  I eliminated the feather pillows and comforters and installed the ultra violet light in the air handlers ( the ultra violet lights eliminate viruses and allergiens .) I thought I had developed the dreaded IPF cough and would cough my self to sleep.  Never realized I had gerd but now take nexium in morning and evening and if having a glass of wine or heavy meal I take a pepcid. I also sleep elevated.

    • #23009
      Mark Koziol
      Keymaster

      Hello John, thank you for sharing your expertise. I find your comments informative as I’m sure our forum members will as well. Your suggestions are helpful. Take care, mark.

    • #23015
      john styles
      Participant

      HI Mark

      I was really blind sided with the gerd. I had some liver scaring and was getting endoscopy to look for varisies and never was any damage to esophagus noted. I never had the burning sensation, only cough. The cough would happen if I put my recliner back a little or sitting up or laying down. I elevated the bed and took nexium and prescription cough medicine but still coughed my self to sleep and was convinced I had developed the IPF cough. I changed my eating to lower fat replaced ice cream with yogurt fried chicken with grilled chicken and reduced meal size and reduced my wine intake to once or twice a week, I now take a pepcid before drinking wine and before bed if I have a glass of wine. I find a basil leaf to munch on helps. I have eliminated the cough when I lay down. still cough a little during the day. I think its a combination of influences and the body acting out that causes this disease. I think if we take everything we have been told, may be feathers, gerd, mold, heredity and re think the situation we may have the answer.

    • #23016

      Hi Thom,

      Yes, it certainly can be hard to understand any genetic/familial links when families do tend to drift. Sorry to hear you suspect there may be that link for you. I’m still trying to understand where any type of ILD fits into my family too. So hard when we just don’t have answers, but you’re right, the only thing we can do is take care of ourselves the best we know how. Enjoy your weekend.
      Charlene.

    • #23017
      Mark Koziol
      Keymaster

      Hello John Styles, I was diagnosed with achalasia. Which is rare and is the opposite of GERD. Instead of letting food and acid come back up, the esophagus muscles won’t let the food go down it’s regular path. Many ipf and pf patients suffer with esophageal motility problems. I like it that you aware what’s causing you problems. Nothing should come between you and your wine! Have a great Sunday and breath easy John. Mark

    • #23047
      Luis Pernia
      Participant

      Hi everyone.  In particular, I am very hopeful that a cure for that disease will soon be found.  You have to hope, move on and look for new encouraging news.

    • #23048

      I sure agree with you @mayid46 (Luis). The day they find a cure will be one to celebrate for sure! Keeping hope is important 🙂

    • #23078
      Richard J Shank
      Participant

      Just another data point:

      I was diagnosed with IPF 2 1/2 years ago.  Nobody in my family or extended family that I know of has this.  I’m special. {place facetious smiley here}.

      Me?  I did many things wrong.  I am 66 and I did smoke off and on from the age of 13 until about 60.  I smoked continuous from 13 until about 22, quit for many years but smoked occasionally.  Then smoked a pack a day for about 5 years in my 40s.  Then quit again for about 10 years (smoking on holiday vacations only) until about 54 when my job became too stressful.  I smoked about 10 cigarettes a day at work.  I had been able to quit relatively easily when I was younger.  I could smoke a pack a day for 2 weeks while on vacation and then come home and not smoke at all.  However, something happened in my mid 50s where smoking took over my life.  Finally, around 60, I just stopped and swore I’d never smoke again.  When I smoked, I smoked both regular and menthol.

      I was diagnosed at 64 with IPF.  Yeah, it’s the I (idiopathic) that is the big issue.  My doctor told me that if they knew the cause of my scarring, they could likely do something.  However, because they don’t know the cause, they’ve got nada.

      I turned to Chinese herbal medicine because my Chinese doctor friend told me China has had a treatment for this (turns out for over 1000 years).  It is not a cure but I think that it really slows the progression of the disease because it is just herbs that improve the health of the lungs.  I cough a lot and I’m often winded, but I refuse to lay down and die.  I’m doing well and I hope to be here 10 years from now.  My father is 94 and even his doctors tell him he’s going to make 100.  He exercises daily, never smoked, and only used alcohol in moderation and even then, he didn’t start drinking until he was about 80.

      In a nutshell, in my case, it is likely not genetic, but environmental.  I’m sure there is a genetic disposition to it all but I think I’m just lucky in my family.  My sister is one year older than me, smoked from the age of 16 until 61, has all the other issues I have (diabetes, sleep apnea, gerd) that are likely causes of this disease and she doesn’t have it (yet).  She’s abused her body much more than I have.

      I think a survey should be created with all the known possible life choices and stimuli that possibly lead to this disease.  We can all check off the items that we are associated with and then tally the results.  It is important to be as open and honest as we can so the results are valid.  Of course that implies anonymity to protect the people in the survey.

    • #23080
      Mark Koziol
      Keymaster

      Hello Richard, thank you for sharing your story. The survey would be a good idea. My doctor thoroughly questioned me on my initial appointment. The appointment lasted over 3 hours. In my case I didn’t smoke or work in a poor air quality environment. I think if every pulmonary doctor who is treating patients for ipf/pf or other ild, doctors should conduct their appointments such as my doctor did. These questions and answers could then be placed in a data base. Thanks for your suggestions and take care. Mark

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