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  • Improved spirometry values

    Posted by Monica Loftin on March 22, 2023 at 1:51 pm

    Hello all – was diagnosed with IPF in the summer of 2022 after I all of a sudden could not do anything without getting out of breath. It lasted for a couple of weeks. (There were signs of fibrosis on an Xray as early as 2919). I had a spirometry in september 2022 and a CT scan that showed characteristcs of idiopathic pulmonary fibrosis. I saw a pulmonogist in October and was told I would get a HRCT and 6 minute walk test and another spirometry test in the beginning of this year. The HRCT confirmed IPF, but spirometry showed improved values for diffusion (25%) and TLC (12%). I have not seen my pulmonologist who just sent a short letter about a new spirometry and CT scan in 9 months.

    I don’t know what to make of this. As I understand it, IPF cannot get better, only worse. Can diffusion and TLC values improve temporarily in spite of disease progression?

    Monica

    Donald Salzberg MD replied 1 year, 1 month ago 8 Members · 13 Replies
  • 13 Replies
  • Mike Clifford

    Member
    March 23, 2023 at 5:44 pm

    Monica,

    Based on discussions I’ve had with my pulmonologist the improvement is likely due to your effort, situation, position, or whatever the last time you had the spirometry. The measurements taken are a more general type measurement as opposed to a specific measurement such as your height. The complete set of measures is more indicative of your status more so than a specific measurements change. It is possible to see legitimate improvements in some or even several measure but it is very unlikely (probably impossible) that the fibrosis is actually improving or getting better. Sorry to offer this interpretation and then again I too am only a patient with the same problem as yours. Hope you do well on your journey and thrive for as long as possible.

    Mike

    • Monica Loftin

      Member
      March 26, 2023 at 2:38 pm

      @cliffmj

      Hi Mike,
      I have great problems in understanding the interface of this forum. This is what I thought I published earlier but it seems it was only published on my personal page. I don’t ignore comments directed to me.

      “Thank you for your reply. I see what you mean, but at least improved values are better than deteriorated values…
      Take care
      Monica”

    • Nina Merendino

      Member
      April 20, 2023 at 1:15 pm

      I was diagnosed via Ct scan done in 2018 because an X-ray looking for pneumonia found fibrosis of both lungs. I was in shock and then referred to pulmonologist who said I had to stop smoking and needed a lung biopsy on the operating table and I said “ no thanks. I have no symptoms of sob or cough. Then I went to UW interstitial lung clinic to the head guy and he told me I had to have lung biopsy thru my trachea and be tested for acid reflux. I did both and do have acid reflux. He asked me if I wanted to get on lung transplant list and I said “No!” He told me I had at most 5 years to live so I told my sons hurried to get my estate and will done and then after another appointment with this doctor, I decided he was rude, gave no hope so I changed to another pulmonologist who said he couldn’t possibly tell me how long I would live!!! So with him I had more breathing tests and they were better than the first ones. I had decided I was not going to let these doctors ruin my life. I stopped smoking, but in a swim spa to work out in due to pain from another disease, and still a year later today, just finished another round of breathing tests. They are even better today! Almost normal. I see him in a few minutes but what I have learned is that 1. Read Mind over Medicine. Exercise. I have been using sucked supplements like Hatkari I think, vitamin E, and a drug on Amazon that starts with a T like Tevigo or something. I listen to regenerative music every night in bed on UTube and think positive!! No cough or sob yet. I have read many stories of living for years and years with this and others that for some horrible reason die very quickly. I just heard a story from my testers today that one of their clients was given Olef ? And now has total reversal of the disease. So find a good doctor and think positive!! For a year all I did was think about my breathing but no more. When and if I get a cough or sob I will go back but not after today! Best of luck! Nina

  • Meredith

    Member
    March 23, 2023 at 7:40 pm

    Improved spirometer y values mean that you were breathing better the day you took the test. It does not mean that your disease has improved. The good news would be that it

    Yes, TLC AND FVC May fluctuate but scans and X-rays tell the real story. Keep seeing your pulmonologist so that if you have an emergency you know who to call.

    I’m a doctor but not an MD. I can’t treat myself or diagnose myself.

    keep in touch with your medical team and be compliant. Remember how you felt when you were out of breath. don’t go bCk there

     

    Meredith

    • Monica Loftin

      Member
      March 25, 2023 at 12:01 pm

      Thank you Meredith for your answer. I live in Sweden and I am subjected to the public health system here. I don’t know anything about a medical “team”, but my pulmonologist wrote me a letter after my last set of examinations on March 1 (HRCT, 6-min walking test and spirometry) saying that my values had improved and that I would be called to another CT scan and spirometry test in 9 months (which I think is a long time..). Glad to have found this forum. Here is where I find useful information and tips on how to help yourself! (One good thing about the Swedish medical system is that you can see everything in your medical records online.) All the best

      Monica

  • Stephanie Young

    Member
    March 26, 2023 at 1:52 am

    Hi Monica,
    I’m Stephanie, I’m new to the group. I was diagnosed in 2001,22 years ago. I was told I would only live 3days. I have good news for everyone. There is the possibility to improve. I am proof of that. I was told before my biopsy that I more than likely would not come off life support. They gave me three days to live. A surprise to all I did come off life support. Ten days later I was able to go home. I was on oxygen,due to the fact my left lung had collapsed. At that point they gave me three years to live. On my first follow up visit I was told the lower lobe of my collapsed lung had opened up and that it would benefit me more than I realized. I remained on the oxygen for about a year. Since being taken off the oxygen I have not had to go back on it. And at some point my collapsed lung opened up fully. I currently still have full function of both lungs. A lot of years have passed. My memory is not as good as it use to be. So my timeline may be off slightly but if so just by a month or so. It was in early 2003 during a routine visit that my doctor told me it was gone. I asked,what is gone? He replied, it’s gone, it’s just gone. He said there was no sign of it. I was in remission. At that point I was told instead of three years I could live up to five. No surprise, I found myself in Methodist Hospital,San Antonio, Texas just a few weeks later for research. I moved to Kentucky in 2004. Having given birth to my only child in 2003 with some difficulty. We both stopped breathing and he was delivered C-section. I haven’t seen or spoke to my doctor since moving. I’m sure he just assumed I passed away years ago. I’m here to let everyone know, I have lived with this for 22 years. I make it a point to never stop moving. I still use inhalers. And have taken a lot of Prednisone over the years. I’m back in Texas. My pulmonary just did a complete and thorough check up. I’ve seen my lungs improve by each passing year. This last test shows me blowing 92% with little resistance. My lungs are stronger now than most people my age (57). But my lungs have put rather a substantial strain on my heart over the years. I am currently in heart failure with an EF of 30%. I was told in the past that the lung only has a slight ability to heal itself. That just is not true. You can go into remission, and you can regain lung function. I don’t remember what my pulmonary function was in 2001. But from 2014 to 2016 my spirometry data shows FEF25-75 with a decrease of 28%. My RV decrease 34% with my DLCO decreased 20% in those two years.I don’t pretend to know exactly what these numbers mean. But my lungs improved greatly since then. I now have 92% function with very little resistance. So with prayer,good doctors, plenty of exercise. Don’t ever stop moving. Follow your doctor’s orders with no exceptions. Continue to push your pulmonary limits. You can heal! You can improve!

    • Monica Loftin

      Member
      March 26, 2023 at 2:20 pm

       

      Hi Stephanie and thank you so much for taking the time to write about your experience. I am very happy for you and it also makes me feel better about my own situation. About following doctor’s orders, there are none. I have only seen a pulmonologist once and at that time she spoke only of upcoming examinations as I had not yet had the obligatory HRCT and 6-minute walking test. When the results of these examinations and an additional spirometry were at hand, I got a letter saying I would be called to have another HRCT and a spirometry in 9 months. Nothing else… so I feel pretty much left to myself. The Swedish healthcare system is going downhill… So I do a lot of research on the internet and started several dietary supplements back in December. I am 80 years old and live alone in a cottage in the Swedish countryside and don’t move enough, especially not in the winter… I guess that is where I could improve. Thanks again.
      Monica

      PS I don’t really understand where my answers appear. This comment appeared on a page where all my pistings were gathered🤔

  • Adele Friedman

    Member
    April 20, 2023 at 3:25 pm

    First thing that comes to mind is whether you really have “I”PF. Many who have PF, scarring in lungs, actually have a cause for it if sufficient diagnostic testing is done. PFTs and walk tests can vary. It’s the trend over time that matters most. One of the most important, FVC (forced vital capacity) is improved generally by losing weight, if you were overweight. Indeed, the scans do show whether, and how much, fibrosis is progressing.  Wonder if you have had extensive bloodwork to see if your PF has a cause, like my Sjogren’s Syndrome, and other autoimmune diseases.

    • Monica Loftin

      Member
      April 25, 2023 at 2:35 pm

      Thank you Adele for your input. I think I may have cracked th code of the uer interface of the forum. Had a lot of problems replying but it turned out it was quite straight forward… I did not loose weight between the two spirometry tests I was referring to; my BMI was about 26,7 at both tests, and yes I did have extensive blood tests, at least I think I did. The blood was analyzed for 21 different things and all values were within reference values.

      Monica

  • Ken Osterlund

    Member
    April 21, 2023 at 9:51 am

    I have been diagnosed with IPF via a HRCTS. The spirometry measurement test has many variables, e.g., your condition, the tech, test equipment used, weather.  You need to take several tests and note the trend over time.  I have been in a gradual decline since the first test, with some tests showing improvement (good days).  The trend will give you some idea as to your general condition – rate of decline.  However,  your ability to do every day functions will be your best measure.

  • Monica Loftin

    Member
    April 24, 2023 at 4:27 pm

    <h4 class=”user-nicename hover-tip click-tip” title=”” data-toggle=”tooltip” data-container=”body” data-title=”Active 3 days, 16 hours ago” data-placement=”bottom” data-original-title=””>@keno</h4>
    <p style=”text-align: left;”>Hi Ken,</p>
    Yes, what you say about everyday functions makes sense.

    Fare well

    Monica

  • Ken Osterlund

    Member
    April 25, 2023 at 12:27 pm

    Just to give you some hope.  I was diagnosed by my pulmonary doctor in 2017 and given six months to live. I entered a research program and they verified I have IPF.  I had bad case of pneumonia in 2011 and had a HRCTS.  The research team reviewed the HRCTS  and discovered I had signs of IPF.  So you can live a long time depending on the type of PF you have.

    By the way my father was from Aland. My mother’s father and mother were swedes from north western Finland.

     

    Good luck.

    • Monica Loftin

      Member
      April 25, 2023 at 2:25 pm

      Thank you Ken. So good to hear good news about IPF. I don’t understand the user interface of this forum and wonder how I have managed to reply to postings. Thought you might be of Swedish ancestry with your name :-). I have written many replies that seem to disappear somewhere. Forgive me if I repeat myself now.

  • Donald Salzberg MD

    Member
    April 25, 2023 at 4:15 pm

    Hello everyone. Monica I am happy to hear that you are PFTs improved over a period of time. As Adele and Mike have said the pulmonary function tests can vary from time to time. I was officially diagnosed with IPF by an open lung biopsy in 2018.  Prior to that a simple chest x-ray picked up that I had pulmonary fibrosis and a HDCT (along with my symptoms) what is diagnosed as hypersensitivity pneumonitis. The treatment for HP is high-dose steroids for a period of time. I did have as Nina referred to as a trans bronchial biopsy. Most people with pulmonary fibrosis have the fibrosis at the base of the lungs, and it is almost impossible to get a biopsy through the bronchial system. I thus opted to have the lung biopsy, because IPF will look like many other lung fibrotic diseases on CT scan. When I had the biopsy, it came back, IPF and not HP. I was having no symptoms of shortness of breath or cough, but I was immediately placed on an anti-fibrotic medication. (OFEV). People that have IPF live twice as long based on studies if they are on an anti-fibrotic compared to not being on an anti-fibrotic. A lot of the old literature states 83 to five-year survival rate and that is changed significantly with the use of OFEV or Esbriet. I got a mild case of Covid last year, and I repeated my PFTs two months later, and it was a worsening of my tests. Three months after that, I went back and they returned back to normal, so those pulmonary function tests are affected by recent illness, or as Adele said, losing weight also helps a lot. I agree with Mike that because the values improved would not necessarily mean that your fibrosis is better. There is nothing on the market currently that improves the level of fibrosis, but the antifibrotics Med slow the process down more than anything else. Nina for a doctor (I am a retired one) to tell you how much time you have to live is a disgrace. With regards to acid reflux many many pulmonary fibrosis, gurus, believe that acid reflux is the cause or a big cause of this disease. I think anybody with pulmonary fibrosis and or acid reflux, should have testing for sleep apnea. Nina I suspect that your pulmonary function tests improved after you stop smoking and not necessarily because the pulmonary fibrosis got better with regards to Lung Transplant’s. You’re not a candidate for that until you are on chronic oxygen therapy to my knowledge. In this country, they are typically not doing Lung Transplant and people over 75 but that might be changing. It used to be that the cut off was age 70 or so but that’s changed. There are exciting studies with Zinc, aspirin, inhaled Esbriet etc. In the five years I have been on antifibrotics I have had very, very little progression and continue to function very well. Nina you mention “OLEF” in your note that it “ totally reversed everything” and the reality is that the drug does not reverse the disease at all, but does slow down the progression. From all my reading patients that truly have IPF should be on antifibrotic meds, but in reality 50% of people are not. But if you cannot take a lung biopsy and you are being treated as a patient with IPF, despite the side effects, your pulmonologist should consider this option as it statistically will likely add years to your life, especially if given at an early stage of IPF. As Ken stated there are many forms of ILD (interstitial, lung disease) and the prognosis for each disease is different depending on a lot of variables. I think it’s really important as I stated to treat acid reflux if it’s present, look at sleep apnea, stop smoking, and be tested for the various other causes a Pulmonary Fibrosis. Thank you all for your comments. I always learn a lot

    Don

  • Monica Loftin

    Member
    April 27, 2023 at 11:25 am

    Thank you Don for yours and everybody else’s generous input. However, being 80 years old, I don’t feel like taking a risk on Ofev/Esbriet or a biopsy with potentially overwhelming side effects but instead aim to focus on keeping as fit as circumstances allow and taking suppplements I believe in.
    Something that surprises me, though, is that I have not seen any postings in this forum about medical cannabis, especially as it seems to be easy to get in touch online with a medical marijuana physician in most states and get a medical marijuana card for about 50 dollars, which presumably gives you the right to buy the drug at the pharmacy. How much the medical marijuana costs in the pharmacy, I don’t know. You can check your state at veriheal.com. Another site that may be of interest in this context is https://accurateclinic.com/accurate-education-fda-approved-prescription-cannabis-based-medications/
    Monica

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