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Idiopathic or not?
Doesn’t “Idiopathic” mean “Source unknown”?
Also isn’t it hard to believe that such a large percentage of us are labeled Idiopathic? Could that be what you get when such a large percentage of our research into our personal history proves fruitless?
Well, so far, I continue to hunt for those speckles of historic dust of knowledge that have so far proved nothing to me. But wait, I wonder about some property I bought 4 acres back around 1997 that was solid wooded and solid poison ivy waist high and up almost every tree with very thick poison ivy vines (probably since the last ice age or the beginning of time?
You know who came to my rescue though, right? A highly touted product on Saturday mornings, somewhat safe, weedkiller advertised most every Saturday morning. Enough said, and I used it by the gallons up the trees vines and all over the ground growth on hot and humid days and etc.and after taking a shower later and putting my clothes in a pile my wife then scooped them up and put them in the washing machine..Only lately have I read an article on internet searches with more sophisticated search tools about how that situation was eventually resolved and my jaw dropped a bit as I read about lung scarring and oils that could take years to sink down low enough to eventually hit layers below the collagen layers and to cause issues with breathing and scarring and ILD over a much longer period of time and years.
I do believe everybody should attempt his or her own research when considering what in their history may have impacted the unknown causes of their personal afflictions. But this could be where you look hard enough and perhaps find a small pearl of something that might change you from an Ideopathic (unknown source) to a named (Agricultural- source and possibly easier to address treatment options? Maybe it could also provide a “starting point” and a likely “ending point” to the introduction of this afflictive catalyst in your life, just wondering?
At any rate it would be interesting to know just how many of our older crowd managed a garden around the 1990’s to 2015 or so era and figured out how to eliminate the weeds the easy way with a highly advertised weed killer product back then?
George Poulsen
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11 Replies
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Hi George.
Unfortunately your post has not had any replies. That
s because as with most men of our age ( but not all ) and with our life experiences we are used to giving practical advice to questions asked by our families and anyone who will listen ( or not). Weve mostly never asked anyone for advice; ever. So the understanding of how we need to ask a question about our conditions on this forum is some kind of magic.. We need to ask the right question with the right attitude: to get the response we need. Our condition is 75% female. Yep that lovely part of our universe. How would they ask?You haven
t done your homework George. There are over 200 types of "so called" ILD ; depending on any underlying conditions you have.</p><p>Mine is CTD PF . Its a game changer ( for me) according to the latest research . You havent said what you have specifically. ?</p><p>Your anger comes across in your post George ( hence no replies) . It is not helpfull when I try to show my wife how Im (not angry) handling this awful stuff , under the radar.I hope this comes across as a positive response George.
John
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George, John, if either of you can find a way to conclusively document the most likely cause of your own ILD, you can then search for an alternative treatment plan, alternative medication, and/or revised prognosis for your particular brand of ILD, caused by the same cause, and you might find something worthwhile, or devastating, to you personally. You could then share that newfound knowledge with this group, with your pulmonologist, and with everyone from your pharmacist to the American Lung Association. If you find great news, you might reduce the number of truly unknown causes of ILD by one or more, so I wish you well, and I will pray for your success. Given the number of known types of ILD, I’d venture that there will probably still be enough types to keep researchers busy for the remainder of your lifetimes and mine. I still pray for one big sweeping cure that proves me wrong, and if you happen to discover that, I will be forever in your debt.
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Hi George. One thing I learned at work was not to ask a question if I don’t know what to do with the answer. To me, finding out how my IPF started is not important and irrelevant. If I have to choose between knowing the origin and getting the cure, no doubt. I´m going through the screening process for a phase 2 clinical trial next week and will do anything within my reach to get better. I may get the placebo, though. But, in the meantime, will continue to live with joy and optimism whatever time I may have ahead. My fantastic wife, of course, my great support. Cheers.
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I have been dealing with the dreaded diagnosis of IPF for 4 years, been taking (OFEF 150mg 2x a day) from the start. My doctor told me after treating me for over three years, he thought I should switch to a center that had more experience with IPF. He is a board certified pulmonologist and the Department Head, but he said “Frankly there are very few people in America who have IPF”. He suggested I select one on three locations near us that had expertise dealing with IPF. I have a great deal of respect for him admitting his limitations, I wish he had a few years earlier. So I choose one that is two hours away, a university hospital. Within two visits I was accepted into a trial. There is a site to see how hospitals rank in Pulmanary Fibrosis care and research, it is your health, well worth the research.
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Actually a better meaning for “idiopathic” is “source not identified”, at least in the context of ILD’s. From a researcher or clinical perspective, identifying the source is not important unless doing so helps in the treatment. For example, identifying the cause of the ILD as sensitivity to bird dander would imply that the best course of treatment is to stay away from poultry farms. As another example, my ILD was caused (or aggravated) by working in a shipyard: therefore I should avoid shipyards as part of my treatment regiment. People with IPF have no clear cause that would benefit treatment, so why should the medical community continue looking for a cause?
But lets be honest with each other: the major causes/aggravators of ILD’s are well known. They are exposure to tobacco (smoking or 2nd hand), obesity, lack of physical activity, and poor diet. You don’t mention whether you have been a smoker, lived or was raised in a smoking household, had other 2nd hand smoke exposure, are overweight, or suffer from other lifestyle induced causes. If it were me, I’d pursue correcting those problems first before suspecting garden sprays as the culprit.
In my case: I once had a job spraying mosquitos with a petroleum based insecticide. I also worked in a shipyard, served in the Navy on a submarine (w/ 24×7 exposure to lots of bad stuff), suffered continuous 2nd hand smoke while in the Navy, and later working in smoking offices and travelling on airplanes that allowed smoking. I am also (slightly) overweight, mostly sedentary, and eat fried, salty food. It shouldn’t surprise anyone that I have an ILD. (But I am now fixing the weight, exercise, and diet.)
My advise to everyone is to concentrate your energy staying (or getting) healthy. Looking for causes that don’t contribute to your well-being are a waste of time. Rather spend your time looking for the positives that can make the remainder of your life, such as it is, worthwhile.
– jon
ps It doesn’t some as a surprise to the medical community that most ILD patients suffer from at least one other comorbidity… Those ILD causes I mention effect every organ in the body.
pps Some people get IPF for no reason at all – at least that anyone can figure out. (I’m thinking of you @Charlene Marshall ). I truly feel sorry for them and their families. They are the rare exception to what I have said above.
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I cannot see any reason to label pulmonary fibrosis as idiopathic, the condition is centred in the interstitices of the lung and interstitial pulmonary fibrosis is a good description. The causes of this condition are many, myself I was exposed to numerous dust storms in inland Australia and then coal dust on mines. However, I was surprised to learn that IPF is familial i.e. genetically carried in families – my sister died from IPF last year and there is research showing the link within families. So there is no need to assume that the causes of IPF are unknown or many as they do have an explanation.
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I had IPF for 22 years prior to Txp. It was labeled HP (hypersensitivity pneumonitis) but no allergen was ever determined. I can guess the contributants but that’s the best I can do; it would have changed my course or treatment not at all. But I am struck by comments that obesity, diet, other lifestyle choices increase risk of the disease. Can anyone share research on this? As I’ve never read, heard, or been told that. I’m just curious. At diagnosis I was 40 yo, average weight and uneventful lifestyle. I’m just curious. But specific diagnosis would have changed absolutely nothing for me as there was “no treatment and no cure other than Txp.” (Quoting my original Pulm Doc)
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I had triple negative breast cancer in 2016, went through chemo/radiation. My Mother has IPF and hers started after she had a stent put in and the medication caused fibrosis. She’s 91 and doing ok. My understanding is that if you have the gene for IPF and you have certain medications, radiation to the chest or Cat scans it will trigger the gene. The Doctor said my last CAT scan after cancer treatment showed changes in my lungs – just slight, but I truly believe it was all from treatment. My Doctor dosen’t agree, but I have read a lot about this and have told my 3 girls not to go through any treatments like I had just in case they have the gene. I don’t have a weight problem, don’t smoke or anything else. I was extremely healthy before cancer. When I’m in Florida the red tide can really affect me. I’m labelled with IPF but I feel like I know why I got it.
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My Husband had Small Cell Ling Cancer age 39 never smoked got it from second hand smoke (parents chain smokers) regardless your comment Dr.’s I heard made a comment everyone carries a gene and something triggers it. He died within a year. We had an HMO I had to fight for his care the whole time it was an aggressive cancer. They just gave up on him.
I would not want my Dr.’s doing that to me and unfortunately me with now lung issues myself and crazy enough and other health issues.
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Hello All, with so much unknown about IPF and everyone reacting differently it’s difficult to determine how to proceed with treatment. I agree that too much energy or emphasis on the cause isn’t helpful for those of us fighting IPF. I worked in a dry cleaner after school as a teenager. I also smoked for 20 years. I was in the Air Force for 4 years as a Crew Chief on a F-4 Fighter Jet. VA says Jet exhaust could be the cause. I also was exposed to Agent Orange during my year in Vietnam as my base was heavily defoliated. I’m trying to get OFEV through the VA and waiting on their decision. I’m actually nervous about the side effects because Trelegy gave me a lung infection and rashes. Stolito made my hair thin like cotton candy . I don’t know if it’s better to take nothing and just let the IPF runs its course. I’m 77 and was diagnosed 5 yrs ago . Any advice ?
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VA offered Pirfenidone for my IPF. My civilian Pulmonologist says don’t take it due to its adverse reaction to sun exposure . I live in Southern California and easily sunburn anyway. It seems everywhere I turn it’s either, bad side effects, road blocks, high co pay (OFEV through United Healthcare had a $2980 co pay) or conflicting treatments. Again, I’m at a loss as to what course of action and a large part of me wants to just give up and let’s the chips fall where they may . I don’t want to die but I also don’t want to be vomiting, popping or bald . Any advice ?
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