• susan-howitt

    Member
    September 29, 2019 at 9:27 am

    I am not able to interpret my DLCO and FEV numbers like the rest of you because here it seems to be totally different,  here being France for the FEV I have worked out I fluctuate between 47 and 43 %  so pretty good I think

    For the DLCO not so sure but there are 5 different values and the first LFT on the 21 September 2018 there were three numbers in the red and two in the black, the last test August 2019 all were way into the red.  Use my oximeter and even on 5lts I can go down as low as 77 walking up the slightest incline. If I just sit around no need for O2 at all, same with sleeping, no oxygen but to get dressed or showered has me plummeting into the 70.  The lowest I got once, before going on O2 and this is what made the drs sit up and take notice, was I kept a log and just bringing the shopping, fair bit, in from the car, no slopes or steps and no more than 20 meters I went down to 49.

     

    Interested in the Chinese herbs,  Denny, especially as there are no other treatments for CPFE

  • taleena-koch

    Member
    January 25, 2020 at 2:01 pm

    @brian-sowter

    Hi Brian.  I am sorry for the late reply.  I just today received a notification from the PF News Forum system that I had a reply here that I was tagged on.  Gotta love technology.  🙂

    The GERD issue has become a hot one. Back in 1999, Dr. Ganesh Raghu (one of the world’s leading experts in PF) wrote a paper about GERD and PF.  It wasn’t well accepted at the time. Over the years, as other docs around the world started learning more, they all jumped on the GERD/PF train.  So now it is widely known that GERD could be a major cause (though not studied enough yet to prove it – it’s a theory in the PF medical community) and is certainly an exacerbating factor in the spread of PF.  Patients should all be evaluated for GERD and treated should they have it.  And most have it.  Let’s face it, I think most of us in the world have it.  Treatment can range anywhere from dietary modifications to medications to a Nissan Fundoplication (surgery to tighten the esophageal muscle at the stomach when the muscle isn’t tight enough and is allowing for reflux).

    I can send you Dr. Raghu’s paper and you can also google and find more information.  If you do this, look at the ATS website (American Thoracic Society) and also at the NIH website for good, valid and trusted information.  But yes, GERD is a factor and it does lower DLCO.

    If you want to contact me privately, my email address is [email protected].

    • adele-friedman

      Member
      April 5, 2023 at 4:47 pm

      Please don’t assume your O2 saturation during sleep is ok. There is an overnight test to see how low you drop, how often you drop below 90 and how long each event lasts. Even if you take a pulse ox reading right away upon waking up, it does not mean you are ok during sleep. A few breaths upon awakening brings the number up. And it may be far better than you were at points during your sleep.

  • timothy-black

    Member
    January 28, 2020 at 7:10 pm

    I am a part of the Patient Portals where I am kept up to date on test results, appointments and etc. I had a recent PFT and sent a note to the Dr asking for the results from the several I had.

    FEV1 is mildly reduced. FVC is mildly reduced. FEV1/FVC ratio is normal.DLCO is severely reduced.

    When a comparison was made to prior study from 9/5/19; there is a significant improvement in FEV1 and TLC; but 17% decrease in DLCO.

    So I have no idea about the overall decrease. Their overall diagnosis has changed since the beginning. COPD / IPF / Sarcoidosis / and now it is IPF with the slow ending of sarcoidosis.

    With my oxygen on with activity, my Dyspnea doesn’t seem to improve other than I stay alive and I stay a tad above 90 on my oxygen level. The Dr semi suggested a second opinion. He is a part of the local Lung & Allergy clinic.

    No wonder I stay confused.

    Tim

  • Charlene Marshall

    Member
    January 28, 2020 at 7:17 pm

    Hi Tim,

    Thanks for getting in touch with us and sharing your experience. Our hospital just started using the online patient portal for more information (they’ve had it for awhile, but didn’t often utilize it).. neat tool, isn’t it? I quite enjoy being able to log in and see my results.

    Yes, PFTs are so hard to decipher! I find it helpful to review each value and compare them to previous tests which helps me know which ones have improved, stabilized or decreased and then overall I have a better understanding if I’ve progressed. It is hard to understand % though, and the DLCO value is the most complex I believe. Are you going to take on the suggestion of finding a second opinion? Goodluck if so and do keep us posted.

     

    Thanks for connecting.
    Charlene.

  • Malcolm Mann

    Member
    January 30, 2020 at 3:54 pm

    Hi all

    There is a very good MOOC (online uni course) called “Respiration in the Human Body” on EDx, from a Belgian university that gives a good grounding in lung function and all things in respiration. The course is basically in french but with english subtitles and is readily understood.

    Its not currently operating, I think they run it annually I’ll let you know when it fires up again.

    cheers

    Mal

  • Charlene Marshall

    Member
    February 2, 2020 at 8:12 am

    Hi @mal-com,

    That would be super – thanks so much for sharing this resource with us. I’d really like to learn more about it and hopefully sign up for the “course” too. I think many of us would benefit from it, as I find understanding PFTs quite difficult at times. Thanks again!

    How are you doing with the fires down under? Have they subsided and the air quality improved a bit yet? I think of you, and many of our other Australian members so often!
    Charlene.

  • Malcolm Mann

    Member
    February 2, 2020 at 3:26 pm

    @charlene-marshall

    Hi

    Where we are the fires have not relented, only grown bigger, two mega fires have now merged, more houses were lost over the weekend. The problem is that the fires are seated in inaccessible mountain country, which up-til now was dense eucalyptus forest, interspersed with areas of farm land. The fires this season are totally unprecedented, before fires lasted a few days to a week, this local fire has been burning since November. Everyone is traumatized, the burnt country looks like WW1 photos form France

    The smoke combined with hot weather has left me stuck indoors with the air con and dog for company, some days the viability is down to a few hundred metres (some times 50 metres) and you can smell the fires.

    Doom and gloom aside, and on a slightly lighter side I have decided to give up motorcycling as its been getting too hard, and have bought a Mazda Miata (MX5) open sports car, as motor cycle replacement therapy, Jan & I are doing a 3 week trip to Tasmania, Australia’s island state for most of March in the Mazda, hopefully no smoke down there.

    cheers

    Mal

     

  • Charlene Marshall

    Member
    February 3, 2020 at 8:36 pm

    Hi @mal-com,

    It is so good to hear from you, though I am so sorry to hear you’re still contending with a raging fire not far from you. What an awful season it has been for so many in Australia… I truly can’t imagine! Even the recent rain fall didn’t knock out some of the fires near you?

    I’m glad you’re staying inside whenever possible with the smoke exposure from the fires. I recently read an article shared by another forum member about the respiratory risks of all those battling the blazes. Reminds me of the EMS responders in 9/11 who so many ended up with pulmonary fibrosis – just breaks my heart. Keep those lungs healthy and breathing in as clean air as you can my friend.

    Have fun in Tasmania with the new car! Sounds like fun – “tazzie” is on my list some day too. Enjoy!
    Char.

  • anne-philiben

    Member
    February 4, 2020 at 3:13 pm

    My DLCO is at 32% down from 54% two years ago.  I think it is from PH.  There is less diffusion space in blood vessels.  I’ve also noticed a significant increase in 02 consumption.  since diagnosed with PH.  I would agree with GERD being a cause of IPF.  While DLCO and other factors have changed the amount of fibrosis seen on CT scan is not significant.

  • glenda-rouland

    Member
    February 4, 2020 at 5:15 pm

    I am having same problem DLCO has gone down to 34 from 49 which I had for 3 years. So much more trouble breathing now with no change in ct or X-ray   Just evaluated for list at Vanderbilt and no PH. Don’t get what’s going on

  • Charlene Marshall

    Member
    February 5, 2020 at 7:50 am

    Hi Anne,

    Thanks so much for sharing your experience with us, though so sorry to hear of your decrease in DLCO. That must be so frustrating for you, especially after 50+ % two years ago. I unfortunately have also suffered a loss in my DLCO after being so sick lately, it really stinks! Your theory around this being connected to PH makes sense to me, have you confirmed this with your cardiologist managing the PH? I’d be curious to know. Glad to hear there isn’t significant fibrosis progression on imaging, I’ll keep my fingers crossed that it remains this way for you!
    Charlene.

  • Charlene Marshall

    Member
    February 5, 2020 at 8:01 am

    Hi Glenda,

    So nice to hear from you, thanks for writing!

    Sorry to hear of your recent decline in the DLCO value, that must be so frustrating after having it at 49 for three years. Does your physician attribute it to disease progression or something a little more acute? My DLCO decreased significantly as well, as I ended up quite sick after being at the PFF Summit in November – battling strep, pneumonia and the flu. There may be a chance to improve my DLCO but not to where it was before, and the increased breathlessness is exhausting. I’m glad there doesn’t seem to be a change in your CT or x-ray in terms of the fibrosis progression, and no PH: this is what makes me wonder if the decline is due to something acute/underlying problem? Of course this is my non-medically trained self asking. How did your eval at Vanderbilt go?

  • luke-r-matthews

    Member
    February 25, 2020 at 12:32 pm

    I had posted earlier about my experience with a reduction in DLCO Numbers that bounced back. Since that post I have experienced a reduction in my DLCO and my FVC Number. Now, Two months since those numbers were recorded they have essentially bounced back to previous levels. In December my DLCO number decreased from 69% to 49%. Last week it returned to 69%. My FVC number went from 75% to 64% and has returned to 71%.

    My girlfriend and I had traveled by airlines at the end of October. We both became ill with some type of upper respiratory symptoms
    I went to bed for a few days and felt much better. She never went to bed rest but coughed for eighth to ten weeks. Her doctor even said she was close to having walking pneumonia.

    My symptoms were an ever increasing shortness of breath and a non productive cough. I was afraid that my disease was progressing at a faster rate. When they took my lung function test in mid December, they suggested I was having an acute exacerbation. They did an HRCT scan which showed no change since the January 2019 scan. After a discussion of a hospital stay, I was sent home with a high dose of prednisone. After twenty days I began to feel better and hoped that I was not imagining a decrease in shortness of breath. As I said earlier, my appointment last week showed an improvement in my numbers.

    I relay this information so that others can know that a reduction in your numbers can be caused by other things than just a progression of this disease. You may not be sleeping well and overly tired, or have a cold, or an upper respiratory infection like I did without really knowing it.

    Best Regards to All.

     

     

  • mark-koziol

    Member
    February 25, 2020 at 1:16 pm

    Hello Luke, thank you immensely for sharing your recent experiences. The information you have provided is beneficial for other forum members. Take care, Mark

  • marianne

    Member
    February 27, 2021 at 8:34 am

    Hi everyone –

    Recent PFT tests show my DLCO levels have dropped drastically but I don’t have a percentage.  My chart starts at 18.00 and drops to 12.00  One year ago I was at 15.00, then 16.50 and now around 11.50.  I will check with my pulmonary doctor to see if I can get a percentage from him.  TLC(pleth) is 3.250 (prior was 3.500), FEV1 steady at 1.850 and FVC down to 2.100.

    Marianne

  • Charlene Marshall

    Member
    February 28, 2021 at 7:42 pm

    Hi @marianne ,

    I’m sorry to hear of your recent drop in some of your PFT numbers. I know how discouraging (and frightening) that can be, especially when the drop is sudden and unexpected. Did your doctor have any suspicion as to why, such as a virus or exacerbation, or does he/she think it is disease progression? I ended up quite ill with a virus when mine dropped significantly but was able to recover some of the function with pulmonary rehab. Just something to consider. Hopefully your doctor can give you a percentage, I too find it so much to understand when our PFTs are put that way.
    Take care,
    Charlene.

  • marianne

    Member
    February 28, 2021 at 8:37 pm

    Charlene –

    Doctor has not given me any information yet.  Have an appointment this Friday.  To my knowledge I have never had an exacerbation.  I am thinking it is disease progression.  I know when I was first diagnosed about 2 years ago that doctor told me I would at some time have to go on supplemental oxygen.  He stated he would rather I go on it sooner than later.  Assuming that will be discussed at appointment.  Will let you know.

    Marianne

  • rachel-norene

    Member
    March 2, 2021 at 4:57 pm

    I too am incredibly grateful for this support group and to Charlene for your leadership and openly sharing your experiences, and wisdom!!  Re the DLCO, my husband were experienced a decline in all PFT readings, and thus we went on OFEV, it took time for him to adjust and taking a daily morning probiotic that is refrigerated  really helped him.    We do credit the OFEV with stablizing the FVC and the TLC (total lung capacity) readings, but regretfully, over the past two years, his DLCO has moved from 59% to 46% — and besides a serious dry cough everyday in the AM, for an hour or so,  and needing oxygen if we go above 2,500 ft, he is stable.    His old CPAP machine was traded in for a more sophisticated APAP machine that he qualified for and that dramatically improved the quality of his night sleep and waking up refreshed.

    I read with interest, one post that the WEI LAb Chinese herbs helped the DLCO stay stable, I think we will try the WEI Lab Chinese Herbs, if anyone had a bad reaction to them, please let me know

    And does anyone know how low one’s DLCO can drop before you are in serious trouble symptomatically??

    • Charlene Marshall

      Member
      March 2, 2021 at 8:31 pm

      Hi @rachel-norene

      Thank you so much for your post and sharing such kind words about me and the forum. That truly means a lot to me, thank you!

      I’m glad to hear your husband’s experience with Ofev wasn’t too terrible and that you feel it has stabilized a couple of his lung functions. DLCO declining can be scary, I remember getting that a few times and I know others have seen a decrease in their DLCO too — @renehakkenberg, this is is something you experienced, wasn’t it?

      I can’t speak to the specific range of a DLCO before your symptoms get worse, but I do know someone who will know! Let me see what I can find out from this specialist and I’ll get back to you Rachel.

      Hugs,
      Charlene.

      • Charlene Marshall

        Member
        March 2, 2021 at 9:38 pm

        Hi @rachel-norene,

        I asked the professional I know about this (without providing any identifying information of course) and he provided me with a severity and classification of DLCO reduction. Moderate would be considered 40-60% function and a DLCO at 46% could cause troublesome symptoms by the sounds of it. Keep in mind everyone is different of course, but the professional encouraged me to pass on that it is important to understand the drop in your husband’s DLCO if you can. Has he had an echo to check his pulmonary pressures or subsequent right heart catheterization depending on the echo results? Might be worth asking his doctor about the cause of the drop and getting a better understanding of that. I am glad to hear your husband remains stable, that is excellent news and do keep in mind everyone experiences symptoms differently so this is just a suggestion/thought from the professional I asked 🙂

  • terry-moriarty

    Member
    March 7, 2021 at 1:10 am

    I’ve found this discussion very interesting. I was diagnosed with an ILD (not IPF) in 2007. In 2011, I progressed to PF. My PFT results have always been very low, especially DLCO. My average until 2018 was around 35%. Then it dropped to 19%.  At my last PFT (9/20), I made it 21% (woo! woo!).

    DLCO is one test that I haven’t gotten any of my pulmonologists to explain. I know it has to do with oxygen exchange between the wall of the lungs and blood stream, but what does a low result mean?  Everything on the intrrnet is doom and gloom. Like why am I still alive? At the last interpretation, I was told that my body is just adjusting to diminished capacity.

    I was told I have severe fibrosis, but really no symptoms except shortness of breathe. During the day, no coughing, some fatigue. Been on oxygen 24/7 since 2011.

    So what’s the impact of low DLCO?

  • rene-hakkenberg

    Member
    March 7, 2021 at 6:16 am

    Hi Terry, I’ve found your post very interesting because my DLCO  is also low  so it’s encouraging how well you have done for so many years while also on low DLCO and 24/7 O2. I have IPF, diagnosed in 2017, but earlier evidence was missed on  CTscan in 2014. You are right, DLCO is a measure of the functionality of the lungs’ exchange of O2 into the blood and CO2 from the blood.

    My DLCO has been low since my diagnosis, starting around 50%, then hovering around 35% with a big drop to 27% this last week. I have the same symptoms as you, sob and some fatigue, no coughing. I am on 200 mg Ofev, nintendanib which causes lack of appetite, diarrhea and weight loss. Are you on any medicines?
    Sorry but I don’t know the answer to your question about the impact of low DLCO, but the number of years you have lived with it is encouraging.

     

     

     

  • terry-moriarty

    Member
    March 7, 2021 at 4:09 pm

    Rene, so good to hear from another low DLCO person. I have Hypersensitivity Pneumonitis which is triggered by some allergent. If you can get away from the trigger, then it can go away permanently. So long as there is no fibrosis. From 2007 to 2011, that’s what happened to me. Then something triggered it again and I progressed to PF.

    I’ve been on and off meds since 2007. Prednisone until 2010. Nothing until 2011, then back on prednisone. Tapered off to nothing in 2014. Put on Imuran in 2015, not because I had any symptoms but because my new pulmonologist thought I should be on something.  Now I have a different pulmonologist (I moved around a lot) and he changed me to Cellcept last September because I was getting worse for no reason. It’s made no difference as far as I can tell.

    What had made a difference was losing nearly 200 lbs. All my PFT results improved except for DLCO.

    Something I’ve learned about PFTs because I traveled around so much. I lived bi-coastal for 15 years and noticed my numbers dropped whenever I was in LA. Would always go back up when test was done in DC where I worked. Now I live in northern California after living 2 years continuously in LA. Results went back up and stayed up over the last 6 years. Except DLCO, which dropped to 19% after an exacerbation in 2018 and has stayed there while other results have rebounded. I think the difference in results can be attributed to LA’s smog. You may not see it anymore, but it’s still there.

  • rene-hakkenberg

    Member
    March 9, 2021 at 9:29 am

    Hi Terry, nice to hear from you and learning about your disease. Such bad luck that your HP went to PF. Despite that I live in a place with very good air and no pollution – the island of Bonaire in the Southern Caribbean – my PFT’s have shown a marked decline, especially my DLCO in the last 6 months. I think that Northern California is the second most beautiful place in the world to live, after Bonaire of course.

    Are you aware of the Pulmonary Wellness Foundation? They have recommended I get an echocardiogram in the hope of determining the reason behind my DLCO and SOB decline. I am trying to get that done.

    Lets stay in touch and advise each other if we find out more about DLCO.

  • terry-moriarty

    Member
    March 9, 2021 at 2:47 pm

    @renehakkenberg

    I’ve had all the heart tests. Last month wore a heart monitor. All is fine except for aFib which I’ve had for years.  I’m setting up my appointments for my 6 month checkups now which include a CT scan and PFT.

    I don’t live in the beautiful parts of Northern California.  I’m near Sacramento in the agricultural central valley between the beach and the mountains. What’s nice though is I can easily drive to the beach or the snow (when we have some) whenever I want. I’ve only been to 1 Caribbean island, Bermuda. I have to say I prefer Hawaii or Australia’s Great Barrier Reef. But I don’t think where I stayed in Bermuda was really representative of the Caribbean islands.

    Yes, let’s stay in touch.

  • Deleted User

    Deleted User
    March 12, 2021 at 2:08 pm

    In response to the original post:

    FVC is a reflection of the level of scaring in the lungs, DLCO is a reflection of scaring but also the level of inflammation in your lung tissue and this is why DLCO can fluctuate. So if your DLCO has dropped suddenly then that could be a sign of increased inflammation (which might be reversible) as opposed to increase in permanent scaring (which is non-reversible)

    If the inflammation is addressed then the decline in DLCO can be reversed and with it the improvement in breathing and O2 saturation levels, therefore it is crucial that you (the patient) force action from your doctors, action focused on anti inflammatory medication. Prednisone is an example.

    My experience so far is that the proactive role of patients in their treatment is crucial in making the right decisions. Doctors see so many patients daily that they sometimes oversee small interventions that could change your personal outcome. Don’t leave it only to them to decide what the next step is.

    If the inflammation does not get addressed then it will turn into permanent scaring.

    My father was in a stable mode for years, then the doctors decided he was on too low a doses of Prednisone for it to have any effect, 2.5mg a day, they were very wrong!

    6 months after stopping prednisone his FVC was the same but his DLCO had dropped by 13% of the pure number (9% of predicted, which is a misleading nr actually) they said its OK because it’s just 1 test, they needed another test in 6 months time to confirm the decline, in 6 months time it dropped a further 12% of pure DLCO nr, and my dad had gone from an active person to suffering fatigue every day. Only then did the doctors accept their experiment had failed and now he had to go back to 10mg prednisone (4 x original doses), 6 months later his DLCO had increased 13% and his energy levels were back to normal. The point here is that DLCO CAN be reversed and it will fluctuate, BUT don’t leave It solely to your Dr to make a decision, be strongly proactive and question every move they make, it’s your life not theirs.

    Also, please don’t focus on the “predicted” numbers of FVC or DLCO because it’s not an accurate number, if your benchmark changes (due to a small shift in weight f.eks) then the predicted changes with it and it makes comparisons to prior tests less accurate, always use the pure nr of FVC and DLCO and calculate the % change yourself. Doctors are not data analysers and I have discussed this issue but they don’t seem to understand the math behind it. Just to note that my father lives in Scandinavia with some of the best healthcare systems in the world, so mistakes can happen everywhere.
    Hope this helps

    Wish you all good health!

     

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