• Posted by anonymous on December 12, 2022 at 12:57 pm

    hi all, I have read a lot here very helpful!   this summer I noticed it was difficult to draw in a full breath. Not a real problem just “thats kinda weird” and chalked it up to being out of shape. Then in September I got a respiratory cold, saw my doc and mentioned the breath thing, and my doc sent me for a xray. They saw “interstitial prominence”, and sent me for hi res ct scan (HRCT). That confirmed there was minimal PF in my lower lungs but my pulmo says he could barely see it. My pulmo sent me for all the LFTs and my dlco was slightly low at 79%, otherwise tests were normal. I can feel very slight chest discomfort mostly all of the time and have a light dry cough. I have a lifetime of coughing with any irritant (even change of air temp) though due to a variant of asthma. Doc didnt see honeycomb, ground glass, or hear any crackling.

    They want to repeat the HRCT and LFTs in six months (Next April).

    My primary said that PF “can be” progressive. And I have not been diagnosed with anything specific yet.

    I did have pretty bad mold exposure over a longish period, and have always been sensitive to it. Also have worked with dusts and fumes on a hobby basis, so I think my lungs took some abuse through my 60 years life!  If this turns out bad, I’ve had a great life so far and my only concern is leaving my loved ones, if it comes to that.

    Any thoughts, experiences, suggestions appreciated!

     

     

     

     

     

     

     

     

    anonymous replied 11 months, 3 weeks ago 9 Members · 18 Replies
  • 18 Replies
  • david-reno

    Member
    December 12, 2022 at 4:04 pm

    I f helps I am in My 3rd year with IPF if things go as they have been I should get 3 or four more years. My wife’s Bro. has the same. He is starting his 9th year. We both take OFEV 100 mg. 2xday.No supplemental OX. yet. I will say My IPF is moving faster then His. Keep in mind that there are over 150 types PF. I wish You well.

    DJR0

  • msherbert

    Member
    December 13, 2022 at 12:47 am

    Hi Chris,

    Given the history of mold and dust exposure it could be Hypersensitivity Pneumonitis. HP can be acute or progressive. Removing the irritant can stop the progression which might explain the small amount of fibrosis. Corticosteroids can also help.

    I have radiation induced pulmonary fibrosis caused by breast cancer treatment. While the cause and scarring pattern are different it acts more like HP than IPF. The  two lower lobes of my right lung are riddled with PF in a reticular (net like) pattern. I was on high dose prednisone for several months which stopped the progression. I now use an inhaled steroid (Flovent HFA) to help with the severe dry cough I still have. It seems that the fibrosis distorts the lung tissue and exposes nerves to the air, hence the cough. The frequency has gone from about 120 to 20 times a day which is a huge improvement. My PFTs are just below normal. I get SOB on exertion but am OK if I pace myself.

    While things are stable right now the progression can be triggered again which is why my pulmonologist keeps an eye on it with CTs and PFTs. It sounds like your doctors are doing the same. If the cough is bothersome you might ask your doctor about trying an inhaled steroid.

    Margaret

  • anonymous

    Member
    December 13, 2022 at 1:04 am

    thanks guys very helpful… hoping for the least bad thing here but we’ll see. my chest does always feel “off” like as if I breathed smoke or something, which is new. the light cough doesnt bother me much. I’ve had bouts of more serious coughing that lasted months going back all my adult life and even in high school, but then it would go away for a long time. Very used to that and it’s very light lately. They called that “reactive airways” and more a nuisance than anything.  but obviously seeing this fibrosis is way different situation now.

    I am wearing 3M N95 respirator when doing anything involving light dust for example today when vacuuming the house, and a full respirator at all times when in the shop. HEPA room filter where I sleep as well (got that when the Covid pandemic started). Trying to protect from irritants.

    One thing I am debating is whether to get a covid booster. I got the flu vax. but I found out there is a new variant and was told the moderna booster is a low protection match for that. I’m slightly suspicious of these mrna vaxes anyway simply because they are so new. (Although that’s what I got last fall)

     

    • adele-friedman

      Member
      December 13, 2022 at 2:18 pm

      My understanding is that almost every person with lung disease should get all the Covid boosters, unless there is some contraindication, like severe previous reaction. MRNA does its thing to the immune system and then leaves the body.

      It sounds as if you’ve done fairly well so far. Kudos to the doc for ordering a high res CT right away, not just regular CT.  What blood work have you had done? That, in combination with HRCT, can pinpoint cause in some cases, including mold damage,, if any.

      • anonymous

        Member
        December 13, 2022 at 6:46 pm

        hi adele, I had a bunch of blood work,

        ANTI SCLERODERMA, MYOMARKER PANEL 3, SEDIMENTATION RATE, AUTOMATED, CYCLIC CITRUL PEPTIDE AB, IGG, RHEUMATOID FACTOR SCREEN, ANTI NEUTROPHIL CYTOPLASMIC ANTIBODY, anti smith antibody, scl-70 antibody, smooth muscle antibody screen, antibody nuclear hep2, .

        I dont think these test turned up anything.

         

  • msherbert

    Member
    December 13, 2022 at 11:33 am

    Everybody needs to make vax decisions based on their own situation.  I have had every vaccine going because any respiratory infection, even a cold, could start the RIPF progression again. I also have to avoid about 300 medications and intubation (like for surgery) since they are progression triggers in RIPF, too. I’m still living the lockdown life and wear an N95 mask if I have to be near other people. It’s a bummer but the alternative (which I was facing when I was first diagnosed) is way worse. I’m looking forward to spring when I can socialize outside again.

  • anonymous

    Member
    December 13, 2022 at 1:49 pm

    Interesting.  What is RIPF?  Would I benefit from knowing the list of meds that are triggers?

  • samuel-kirton

    Member
    December 13, 2022 at 2:20 pm

    Chris,

    As Margaret said, vaccination decisions are personal choices. I am a post-transplant IPF patient. I have had the bivalent mRNA vaccine and Evusheld. I encourage you to talk to your care team about any consequences of not being fully vaccinated. Some care centers have declined to consider a patient for a transplant who is not fully vaccinated.

  • mike-monson

    Member
    December 13, 2022 at 2:49 pm

    I was diagnosed with IPF about a year and a half ago. Every 3 months I have a CT scan of my lungs and a PFT test. Low and behold unknown to my doctors at the University of Utah my symptoms have greatly improved. I no longer use oxygen. I am 78 years old. The scarring will never go away but my symptoms have greatly improved!! I attribute my success to a good diet, weight control and exercise.
    I’m sure that I could have an exacerbation down the road but for now all is well. I was on OFEV for 6 months but couldn’t handle the side effects. The university is trying to get me qualified for esbriet but so far my insurance has shot me down.
    Anyway…with all of that said there is hope for all. Have a great day!
    Mike

    • adele-friedman

      Member
      December 13, 2022 at 4:36 pm

      High resolution, or any CT scan does expose one to radiation, so I would ask the doc if one is suggested more often than every six months. I was just told last April’s does not need to be repeated for this year. As for diet and exercise reducing fibrosis, there is no scientific data supporting that. Was there another medication? In my case, mycophenolate reduced ground glass opacities (a marker of inflammation, not scarring) a good deal.

  • anonymous

    Member
    December 13, 2022 at 3:54 pm

    Thanks Mike,  happy for you.  🙂    Did you say Diet and exercise? This disease is more horrible than I thought!  just kidding!  It’s starting to become apparent to me that outcomes are VERY variable with this.  I can only hope my case doesn’t progress fast, that if/when it does, down the line, there’s a possible lung transplant option, and also my doc said PF is under research (as is I’m sure research going into making transplants more successful and last even longer).

    Might just get the covid booster, going to look into how good a match the current one is for current variants. My chest sorta bothering me hence the light dry cough, I wonder if thats something should be looked at by my Pulmo or is that normal for PF?   (Nothings changed since CT/LFTs and pulmo visit just weeks ago which obviously included him listening). I just wonder if PF normally always feels like a slight discomfort (like I said, as if I breathed dust or smoke, when I havent)?

     

     

    • david-ota

      Member
      December 21, 2022 at 2:55 pm

      Chris, your diet and exercise comment made me laugh. Thanks! It really is a crappy disease. If you have not had a ‘formal’ diagnosis of PF you may want to grab some Term Life Insurance while you’re still insurable.

  • claire

    Member
    December 13, 2022 at 9:28 pm

    Hi Chris, try not to stress about it as there is so much info that can be discouraging. I just wanted to share that I was devastated when I got the IPF diagnosis, but that was a beautiful 13 years ago. I only have mild shortness of breath and have not been on any meds. I definitely wear an N95 when I go anywhere, plus I have all the Covid vacs.  Other than that, my life is “normal” if that can be said during this crazy world and time. Best wishes to you!

  • arthur

    Member
    December 14, 2022 at 2:40 am

    I had smilar experience.I took cat scan in August and radologist said probale ILD and other drs relying on this report concluded that I had ILD.All blood tests were negative.Saw another pulmonary DR. in Florida and he revd scans and said he didn’t think it was scarring but was inflamation as I had the scans when I had covid.Getting a new scan and pray that I have inflmation and not scarring.No physical signs.Work out ,ride the recumbant bike and get heart rate over 100 and no problem.

  • mike-monson

    Member
    December 14, 2022 at 2:40 am

    Hi Chris! Your right, IPF is different for everyone. I grew up at home with a dad that smoked 3 packs of lucky strikes everyday. I smoked myself from age 12 until in my 50s. I have been a welder. Auto body painter and was subjected to agent orange during Vietnam. I suppose that’s why they call it idiopathic. They just don’t know. I also have small fiber neuropathy and so I lean toward the Agent Orange as a real possibility although I’ll probably never know. The VA is good about treating my symptoms but they sure don’t want to admit any wrong doing on their part.
    I’m too old for a transplant and don’t think I’d do it if I could. I’ll leave that to the younger folks. Good luck to you Chris!!

     

    • anonymous

      Member
      March 9, 2023 at 3:21 pm

      Thank you for your service Mike to our country. I had 3 veterans in our family, one WW2 medic Italy/Germany, one cold war (atomic vet!) and one Coast Guard.  It’s a big regret I didnt sign up myself and I look up to everyone who has served.

  • msherbert

    Member
    December 14, 2022 at 2:41 am

    Hi Chris, RIPF is radiation induced pulmonary fibrosis (a side effect of radiation therapy to the chest for cancer.) There are over 200 types of interstitial lung disease and consequently lots of acronyms and a variety of treatments. You would have to check with your doctor to see if those drugs were a problem in your case. My pulmonologist warned me since many of them are cancer drugs. There is a website which lists them for anyone interested.

    http://www.pneumotox.com

     

  • Millie

    Member
    December 14, 2022 at 9:50 am

    Hi Chris: You are fortunate that it was found early on, if that is what it is. Follow-ups are important to check it’s progress. When I was first diagnosed, 1 year ago, I had to go on oxygen immediately. It showed up on an x-ray I had done 4 years ago for something else and I was never told about it. That makes me very angry. I’m taking Ofev and also trying laser therapy according to the protocol of Dr. Hall, who himself has IPF. It is supposed to halt the progress of the disease. I’m having a baseline CAT scan done next month and then, 6 months later, another one. This will tell me if there has been any progression while using the laser and if it is working for me. Your doctors are on top if it and that is important as is early diagnosis. You may be able to stay ahead of the game. Good Luck. Millie

  • john-styles

    Member
    December 15, 2022 at 11:21 am

     

    Saw PF on a x-ray reminded me when I was 10 years old and got home from school and my older brother who was 18 at the time was eating a late lunch of chicken noodle soup and reading a magazine. Hw asked me anything new at school and I said yes, we were doing drills for a nuclear weapons explosions and we get under our school desks, he showed me the magazine he was reading and it was a playboy showing a man with his head between his legs attempting to kiss his rear end and it it read” in case of nuclear explosion put your head between your legs and kiss your but good by.” I laugh and think how  it may be appropriate for PF  today.

  • rand-obrien

    Member
    December 15, 2022 at 7:12 pm

    I would be worried if my PCP noted that IPF “could” be progressive, given all the literature out there.   It is progressive, by all accounts I’ve seen.  I didn’t catch where you live, but I’d get to a good BIG hospital for a full work-up.  If near a place like Boston or Denver.  Look up the top Pulmonary Hosp1tals via Google and go. The sooner the better. I ain’t not doc, but getting on Anti-fibrotics early seems important.  From the stories on this forum, doctors have waited to prescribe appropriate Rx way too long.  In my career as a psychotherapist, I had to continually nudge my clients to advocate for themselves….I found the majority of docs won’t do it for them.  Educate yourself and find the right facility.  Luckily, my Pul. doc was a resident at MGH Pul. in Boston, though I’m not in Boston. and my PCP dxed it as soon as he heard “crackles” and an good old fashioned x-ray.

  • anonymous

    Member
    December 15, 2022 at 7:24 pm

    Thanks Rand, I dont have IPF yet, nothing diagnosed. Next Spring we repeat HRCT and PFTs etc.  It could well turn out to be that, but at this point could also be scarring from almost anything.

    Even though it barely shows, and lungs sound good, I can “feel” my chest is not right. I wonder if this is always the case with PF? Does it always feel funny? Or only when it is active?

  • mike-monson

    Member
    December 16, 2022 at 9:40 am

    That’s a great one John!

    Mike

  • anonymous

    Member
    December 19, 2022 at 9:28 pm

    Well I got the covid booster. Already had flu vax in Oct.  Been wearing N95 when in crowded spaces like stores or when working near dust etc.  Trying to get a little more exercise too. Not much more I can do until the followup imaging and tests in the Spring.

  • denise-stogdill

    Member
    December 21, 2022 at 2:56 pm

    Hi Chris, I don’t know enough to tell you that when your chest feels “funny” it’s because the IPF is active or not.  But I do on occasion have an uncomfortable feeling in my chest area as well.  Mine feels like someone is sitting on my chest and even though my O2 sat is good, I feel like I’m working a little harder to breath. I’ve spoken to my dr about it it and he says I He says it can be inflammation or I can be reacting to something in the air (change in temperature or allergens).  I don’t do anything when this happens but I have heard of people doing albuterol inhalers.

    Regarding the boosters, I know there’s a lot of controversy out there over whether they’re good for you or not.  Through the recommendation of both my pulmonologist and rheumatologist I have had all COVID vaccines and all other vaccines, i.e., pneumonia, shingles, etc.  So far, my last CT which was done about a month ago showed no progression of the IPF.  I didn’t have any issues with the vaccines either. While taking the vaccines is a personal choice, I took my drs advice and went with it.  With this disease, we need to do as much as we can to prevent infection or chest colds or anything else that can put us onto a spiral of exacerbation.  Just food for thought!  You’re a warrior!  Good luck on your journey.  God Bless….

  • anonymous

    Member
    March 9, 2023 at 3:17 pm

    Hi Folks, I was just re-reading this thread, very helpful.  As an update, despite getting the booster, I caught symptomatic Covid in January. Took paxlovid and was better in 1 day, but when the 5-day pax ran out, I got sick again but again only mildly and it cleared on its own. My chest symptoms are unchanged. Thank God

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