August 23, 2019 at 8:04 pm #20985
Good Evening Forum Members,
I am writing on behalf of one of our wonderful members. He and I had a conversation last week about his recent trip and lung function results from one of his Pulmonologists. In particular, we were talking about the noted decrease in his diffusing capacity of the lungs (DLCO) number. Based on my limited and non-medical understanding, this number reflects the ability of the lungs to transfer gas from air that is inhaled to the red blood cells, circulating then to the rest of our body.
Per his note below (verbatim); he is wondering if any other patients living with IPF have experienced a significant drop in their DLCO number and/or if there is anything he can do to reverse that decline. Here is his message, with some background for context as well:
“Was diagnosed with IPF in dec. 2017 but a 2014 CTscan showed unrecognized early symptoms. Have been taking 200 mg instead to the recommended 300 mg of Ofev but find it nearly intolerable due to side effects like lack of appetite, weight loss, fatigue, etc. A recent lung function test showed a fairly good result in spirometry and volumes but diffusion (DLCO) went down from 45% to 34% in a time span of about 3 months. My question: have other IPF-ers experienced similar DLCO reductions, characterized by increasing shortness of breath? Any medical explanation for the quick reduction or any recommendations on how to deal with this?”
Thanks in advance for sharing with all of us.
August 25, 2019 at 3:03 pm #21019
Hi! This posting made me go lookup my results between 12-2-2015 thru 8-14-2019. My % of predicted DLCO went like this: 57-52-53% . So I guess that is pretty stable. The respiratory therapist administering the PFT this last time was so helpful in letting me take my time in between each area of tests, he did not push me to just get thru it. As I am retired RN he and I talked some too, making the testing easier for me too. No perspiring, feeling awful like last year. He told me when I questioned the gases used in very small amounts for this portion are carbon monoxide (the fastest to combine to our blood), CO2, and nitrous oxide. I found that interesting. It is when I look at my FVC that I can see changes:. From 10-01-2001 to 8-14-2019 the actual went from 3.77 to 2.84 and % predicted from 107 down to 88% last yr and back up to 93% this year. Last year was a worse year for me physically. I am not as fatigued this year. The DLCO was not listed for years 2001 and 2007. I must have been in a full exacerbation in Jan & Feb & part of March last yr as I truly felt like I was dying and just didn’t care. And had no idea what the super fatigue, constant cough and not wanting to eat, never mind having energy to fix it was caused by. Diagnosis IPF in May, 2018. Thank God I didn’t die and have found help and advice. Thank you all.
August 27, 2019 at 4:30 pm #21037DennyParticipant
My DLCO was 59%when diagnosed in 2017. After taking WEI Lab Chinese herbs the numbers went from 69%, 76% twice and my last test was 89% in June. The herbs work!
August 27, 2019 at 6:18 pm #21049
Glad you continue to find them beneficial Denny, that is wonderful 🙂
August 30, 2019 at 6:05 pm #21086
September 9, 2019 at 5:53 pm #21202
Hi again Charlene.
Still on topic of reduced DLCO. I received a call today from a local hospital pulmonary rehab Dept. He told me they’d received an order from my Pulmonologist for rehab. I explained I just am starting my 3rd week of online rehab so could he hold the order until after I finished the 6 weeks? He had my latest PFT and told me I just did qualify with my DLCO in 50’s. They cannot accept a patient in their rehab if DLCO 60 or better. He also said my FEV1 at 116 and ratio were important to look at but mine were pretty good so they must have diagnosed me at age 73 pretty early. My DLCO as listed before has been in 50’s since 2015 that I am aware of. My thought is not to depend on just a PCP to know when you need to be referred to a pulmonologist. The person themself is still the best advocate for self! And even if seeing a pulmonologist may have to push for cardiopulmonary rehab.
<p style=”text-align: center;”>Praying you are doing better with an increase in energy. Hoping Dr okays your trip plans tomorrow when you see him/her.</p>
September 10, 2019 at 7:46 am #21204
Oh – you’re so kind to remember my appointment with the pulmonologist today, thank you! I am heading to clinics within the hour in hopes of a “clean bill of health” for my trip. I use quotations because I suppose those of us with IPF will never have a clean bill of health technically, huh? 🙂
Interesting to hear what your pulmonologist said about rehab and DLCO number. Do you think you’ll do their rehab program if they can hold your spot until after your 3rd session of online pulmonary rehab is done? You’re totally right about the patient being the best advocate for themselves and their needs. Thanks for sharing and I hope you’re doing as well as possible. Thanks as always for writing us!
August 30, 2019 at 6:08 pm #21087
Hi Linda! Good news your numbers went back up. Do you attribute it to anything that you have been doing differently during this period? Wishing you the best, Lorraine
August 27, 2019 at 6:13 pm #21045
Thank you so much for sharing your experience with your DLCO number and the function of it over the years. I know the gentleman who wants to know about this will find your response beneficial. Glad to hear this year has been better for you, and that that is reflected in both your PFT numbers (%) and how you feel. It is encouraging to hear this number fluctuated and has increased again, thanks for sharing. I’m also glad you’re still here with us and such an active, wonderful member of our forums community.
September 10, 2019 at 10:36 am #21219jim noxParticipant
I had a similar experience. For several years after diagnosis, I had periodic PFT’s. My volumetric (FV & FV1) numbers were always pretty good. On a subsequent visit, my pulmonologist noted my good volume numbers and said I was doing well and could expect a longer survival. I asked if he was sure as I had been experiencing continual decline in O2 Sat pulse/oximeter readings and perceived myself as in serious decline. He looked again at the PFT report then said: “I take it all back”, look at the diffusing numbers – – they have declined 60% in a year. So he perscribed OFEV. (which I have declined to take for various reasons.
I am experimenting with Metformin for the moment. We’ll see. Fingers crossed.
September 11, 2019 at 8:50 am #21249
Thanks for writing and sharing your experience with the DLCO number, although so sorry to hear of your 60% decline. It must have been so disheartening to hear the doctor say, “I take it all back”. Did they give you any indication about the cause of that decline, or did the doctor just attribute it to disease progression? Hope the metformin exploration goes well for you, please keep us posted. I think they are on the verge of making some sort of break through with this drug and IPF. Take good care.
August 27, 2019 at 8:28 am #21031
My wife’s DLCO went down 10% between her tests in Aug 2018 and April 2019. Her tests yesterday, Aug 2019 went back up 10% to her 2018 numbers. Other numbers stayed the same, but she dropped to 88% on her 6 min walk, never below the low 90’s before. She is not on O2 but her Dr. is retesting in 3 months.
Maybe your DLCO will go back up as hers did. Good luck.
August 27, 2019 at 6:13 pm #21046
Thank you for sharing – I’m really happy to hear your wife’s DLCO reading has increased, that is encouraging news. I hope it remains stable at her next test. I appreciate your response, and I know my friend will as well.
Wishing you and your wife well,
August 30, 2019 at 6:12 pm #21088
September 5, 2019 at 10:33 am #21169
My wife did nothing. The DLCO came back all by itself.
September 5, 2019 at 2:46 pm #21171
Hi Ed: Thank you for your reply. Best wishes to you and your wife. Lorraine
September 6, 2019 at 8:14 am #21177
September 6, 2019 at 7:45 am #21176
Thanks for sharing Ed, I am glad the DLCO number has increased again for your wife. That is very encouraging news. I appreciate you getting back to us!
August 27, 2019 at 10:27 am #21032Glenda RoulandParticipant
This sounds like my story. Got diagnosed in 2015 but cray shied in 2013 but dr never got it. My DLCO has been stable starting at 50 always testing between 48-50 which is stable. In May of this year it was in the low 40’s and recently it was 34. Concerning the drop wondering if I had exerbation. My FVC has stayed low 70’s this year I started 86 in 2015 and went to 70’s mostly last year. I am being evaluated for transplant
August 27, 2019 at 6:15 pm #21047
So nice to hear from you, I hope your transplant evaluation is going okay? I know it is a lot to endure, we’re thinking of you!
Thanks for sharing your experience with your DLCO numbers and the trending change in them. I hope others’ responses have been helpful, providing hope that they can increase again.
August 27, 2019 at 1:46 pm #21035Luke R MatthewsParticipant
My DLCO number was 68% on 12/17/18, 58% on 4/16/19, and 69% on 8/16/19. No explanation was given for the changes. As stated above, maybe yours will go back up. My FVC numbers have been stable.
As a side note I started on Ofev and my side effects became worse each month. I talked to my doctor about switching to Esbriet and now have been on it for five months with no stomach issues like Ofev. I am very cautious of the sun on Esbriet and do take precautions, so far with no real issues.
August 27, 2019 at 6:17 pm #21048
Thanks so much for connecting and sharing your experience with us, particularly the trend in your DLCO number over the year. Really encouraging to see that it has increased again – was any explanation given for that? Always curious to hear of others’ experience.
Glad the switch to Esbriet has been helpful for you too! Sun exposure is important to be mindful of on that drug for sure, but glad the GI issues have settled since coming off Ofev. Thanks again for writing.
August 27, 2019 at 6:27 pm #21050
Hi Charlene, you are welcome. I do get a lot of info belonging to this group. BTW, I did my own 6 minute walk but not with distance today – with bootcamp here in my LR walked a full 6 mins at times even lifted knees and at other times my arms upward. Started at 95% O2 finger oximeter, with motion starting down to 94% and stayed there until right before the 6 minutes when O2 sat dropped to 92%. This was my 4th day but first at 6 minutes, 2 sessions were 4 mins and yesterday 5 mins. And I did not need to breathe thru pierced lips this time until toward the end whereas was done about half way through. Pray you are feeling better.
August 28, 2019 at 11:12 am #21053
That is great Linda, thanks for the update on how your first 6MWT went. Glad your 02 sats stayed within the 90’s! Kudos to you for being so proactive in your care, that is important. Enjoy your day!
August 28, 2019 at 12:21 pm #21058
There can be many reasons for a decline in DLCO, but he does need to talk with his doctor about this. If he isn’t going to be able to see his pulmonologist for awhile, he should email in his medical portal if his clinic has one. (Many do now.) Otherwise, he should call and ask for a call back from the doctor or one of the staff to discuss this decline.
DLCO (Diffusing capacity) is a measure of how well the lungs are doing the gas exchange – exchanging the co2 (carbon dioxide) in the blood for oxygen. As the lung tissue stiffens from fibrosis, there is less and less gas exchange being done so the co2 in the blood is higher. The need for supplemental oxygen typically increases as well. The supplemental oxygen won’t take the co2 out of the blood, but it will help to get the right amount of oxygen to the brain, heart, other organs – to the entire body.
DLCO does decrease as fibrosis spreads so this decrease could be due to a progression of the fibrosis. It can also be affected by other factors such as other lung problems (copd, etc) and even GERD. Does the patient have untreated GERD possibly or maybe GERD that has worsened? There are many factors that can affect DLCO so it is important for the patient and doctor to have a conversation about this and try to find out why his DLCO decreased substantially.
In the mean time, it is important that the patient is getting adequate oxygen so he should ensure that he is using a liter flow that keeps his saturation from falling below 90%. If this is higher than prescribed, he should tell his doctor that he needs additional testing to see what his new need is. While waiting for that, he should be checking his oxygen saturation with a finger pulse oximeter and making note (on paper or electronically) what his results are: Date, time, saturation and heart rate, activity (sitting, walking, going up stairs, etc), duration of activity when he checked saturation, and how he was feeling (dizzy, lightheaded, chest pain or pressure, etc). This way he can show his doctor what is truly going on.
Important things to note about finger pulse oximeters: They can be off by +/- 3% so a reading of 90% is anywhere from 87% to 90% and some are better than others at detecting the reading right away so keep it on for a couple of minutes to ensure a good read. When taking oxygen saturation during activity, it is important that it is DURING activity. Oxygen normalizes in PF patients quite quickly after activity is stopped so if they stop, sit down, and then take it, they won’t have an accurate “during activity” reading. Lastly, If the patient has something like Raynauds and it causes cold fingers, there are forehead and earlobe oximeters that can be purchased, those they are more expensive than the finger pulse oximeters. They can also try to warm their hand up first using those disposable hand warmers that people use in cold weather or they can use a heated towel, heating pad, etc. Get the fingers warm and then take the reading.
August 30, 2019 at 11:15 am #21071
You’re amazing – thank you so much for this thorough and very thoughtful reply! I am sure the individual seeking this information will really appreciate your level of knowledge regarding this topic. I think others will find your post helpful as well. Thank you again, and for all you do for those of us living with this disease in the IPF community.
August 30, 2019 at 11:15 am #21057
Hi Charlene – yes, I am trying to be proactive for my health. This rehab starts slow and progresses over the 6 wks. The Bootcamp is being offered again at 50% discount making it under $50 for 42 consecutive days lessons and strengthening not only Pulmonary but also legs, chest, arms. Lessons in nutrition, meditation, encouragement. I look forward to it daily to do at my own convenience in my home. See http://www.pulmonarywellness.com for new discount for Dr Noah Greenspan’s birthday discount. I plan to use my oximeter now when doing walk-about as I am sure will get longer. And when out and about in 22 acres of sr community I live in.
I hope you are feeling better. BTW when is your trip to Hawaii?
August 30, 2019 at 11:17 am #21073
So nice to hear from you, thanks for writing back!
I’ve heard a lot of really great things about the pulmonary wellness program. Good for you for trying it out! Are you finding a difference in what you’ve done already, when it comes to your oxygen sats or even how you’re feeling? The weather here is “cooling” down a bit as we approach fall, which I am a bit sad for because I love summer but the air feels just so crisp and clean for me to breathe.
Thanks for asking about Hawaii – I am so excited, and leave in 26 days (on Sept 25th) 🙂
August 30, 2019 at 11:29 am #21075Michael KesslerParticipant
For what its worth my wife’s DLCO went from 45 down to 15! I nearly panicked when I saw that number but never said anything to my wife as she would have worried herself crazy. That was over a year ago.
She is is on O2 ,24/7 @6 lpm.
Her other pft numbers also decreased but not that dramatic.
I don’t believe there is much that can be done to increase it or the Pulmo Dr. would have discussed it further. I suspect that the body has way to adjust to these types of changes.
She does go to COE and I do feel she is getting best of care.
Forgot to mention that she was on OFEV for 6 mo but couldn’t tolerate so was switched to Esbriet a year ago and tolerates it quite well.
She was diagnosed in March 2016. She had symptoms for a couple of years before that, but just figured it was the aging process. She is now 77.
I’m not downplaying the seriousness of DLCO just relating what our personal experience has been.
August 30, 2019 at 2:22 pm #21083
Hi Charlene – yes, I am feeling better physically with a bit more energy doing bootcamp. O2 sats yesterday between 95% down to 90%. Room air. I think of you often and wondered if you have done respiratory rehab yourself with working & fatigue? Starts slowly and keeps progressing, did Qigong yesterday, Yoga breathing day before plus working on accessory muscles for breathing several days now. Started at 4 min walk-about and today on day 6 up to 9 mins. If possible to do continuously but if not can breakdown to whatever we can do to get total 9 mins in. I am very pleased to have chosen to do this. Cannot beat the price plus all it gives me hope of having in future. Have you seen the raremark interview between a Dr in UK and a patient from Plano, TX? He was diagnosed at 72 and is now 81. Good interview. Think I will join site just to be able to listen.
I’ll be thinking of you on your trip and hope you find it quite relaxing and can breathe easy, getting your body relaxed.
September 3, 2019 at 1:01 pm #21123
Nice to hear from you and really glad you are feeling better and finding a bit more enery with the bootcamp. I have done a program through my local transplant center called Pulmonary Rehab. I haven’t had time to really look into the online versions – ie. Dr. Greenspan’s program – but have starred this so I can access it in between rehab programs. I really found it helpful and hope to do it again throughout a 12-week session after returning from Hawaii!
I haven’t heard that interview, thanks for sharing. Can I find it via a quick Google search do you think? I am currently trying to decide if I want to attend the PFF summit in Texas in November, I can only imagine how much information will be shared there.
Thank you so much for your kind words about Hawaii. I’m so looking forward to it and truly hope to relax both my mind and body 🙂
August 30, 2019 at 6:49 pm #21090NanParticipant
Wow i have learned so much on this thread. My DLCO is 62%, my first PFTs, i did not even know what that meant. It does say on the report “volumes treading towards restriction that would be in keeping with interstitial lung disease, mildly impaired diffusion”. I dont understand any of the results on the PFTs but my saturation was good. Vital capacity less than 90%. How often are these tests normally done? i was exhausted after the test, i coughed so much through it.
September 3, 2019 at 1:08 pm #21125
Charlene and everyone dealing with PF… I would recommend the PFF Summit in San Antonio in November if you can. I have been to the Summit multiple times and not only is it a GREAT educational experience, it is also so wonderful to meet others in the PF community face to face. There are a LOT of patients and caregivers there and it’s always so good to finally put a face to a name. 🙂 I hope you can make it!
September 3, 2019 at 1:13 pm #21127
I agree Taleena, and I hope I can attend! Right now, I plan to 🙂
I’d love to meet other members of the PF community face to face and am planning on writing a forum topic about this soon to encourage others to attend if possible.
September 3, 2019 at 1:12 pm #21126
Do you have a designated lung specialist / respirologist yet? If not, I’d highly encourage you to obtain one so that he/she can help you interpret the findings or results on your reports. They are so hard to understand I agree. I know I owe you a private message, I’ll write back ASAP!
August 31, 2019 at 7:52 am #21096May Mya WinParticipant
I changed from Ofev to Esbriet because I could not tolerate the Ofev.
I have been on the maximum dose of Esbriet now for 9 months.
When I saw my doctor in early August this year, my function test was almost the same but the gas exchange DLCO was down from 45% to 39%. There was more fibrosis on X-ray This was reflected in my oxygen concentrations. There was a drop of 1% then and a further drop by another 2% within these past few weeks.
The doctor explained that different people behave differently and there are periods of plateauing off and periods of decline.
It was interesting to read Taleena Koch post. I gained much information about variability in the pulse oximeter reading in each of them.
I am not eligible for a lung transplant.
In the absence of a medication that cures. I have had very little response to the antifibrotics, I am hoping for a medication that will improve my well being and pulmonary function and subsequently prolong my life.
The post about Emphy clear N115 and the good results are encouraging and I am eager to try it.
Has anyone used it? Where can it be obtained?
Where is it available?
Can anyone help?
May Mya Win
September 3, 2019 at 1:08 pm #21124
Hi May Mya Win,
So nice to hear from you, thanks for writing! Isn’t it so frustrating to know we need a medication (ie. Ofev) but our bodies can’t tolerate it? I’ve heard a lot of people having a hard time with Ofev so I hope Esbriet has been better for you.
My friend who is inquiring about the DLCO will appreciate hearing your comments about your latest PFT, although sorry to hear there was an increase. Did they do anything else / change the course of disease management for you?
My doctor also agrees that everyone responds to this disease so differently – steady or rapid decline and also periods of plateauing. I see my doctor next Tuesday and am hopeful my numbers haven’t declined a lot ahead of my trip.
I haven’t heard about the medication / option you shared above, but I wonder if anyone else has? We’d appreciate your help if so! Please keep in touch, always great to hear how you’re doing.
August 31, 2019 at 8:20 am #21097
Hi Nan – re frequency of PFT’s, My pulmonologist has done a year apart and told me that next year he probably won’t order a High Resolution CT Scan but just the PFT to compare with. I have read others saying they do every 3 months. So I guess it varies. As I don’t want a lung transplant I think he will be more conservative with me. The PFT I just had was ordered as required before respiratory rehab here in our area. However, I have not scheduled that yet as doing pulmonary rehab bootcamp with Dr Noah Greenspan, on my 7th day of 42 today. However, I think if I feel a lot worse, he would order HRCT. Or at least we would talk about it. I do want to maintain as much of my health as I can. May you do well in your treatment.
August 31, 2019 at 8:37 am #21098
Hi Lorraine – I do not know what affected my DLCO or FVC numbers. One thing is I decided not to let administer of the test rush me. Last year I was a mess doing the PFT. The young guy seemed to just want to get thru the test and I felt rushed. This year I decided between the different parts I would not start the next one until I felt ready. However, I also had a much more experienced and kind respiratory therapist giving this PFT. I think that helped a lot, no pushing me to zoom thru the test. He also explained everything ahead of time to me, not just what to do. Now that I am in bootcamp I wonder how different it might be next time when I do a PFT. After the 42 days I plan to do maintenance.
Has that birthday party happened yet? I am sure your grandfather enjoyed it music or not. I never was with either of my grandfathers on their BDs . So both of you were blessed to just be together!
September 2, 2019 at 3:07 pm #21110
I think I am a bad test taker. Also, I do not follow instructions well. Perhaps because I am distracted/not concentrating, because I am in panic mode when taking the PFT.
One Respiratory Tech is very persistent and then the results are better.
Lately, I am experiencing shortness of breath, primarily when it is humid and walking hills, hence the decrease.
I have come to use the Voldyne 5000 Incentive Spirometer again, as I retired from the harmonica, altho I did break out of retirement to play Happy Birthday to my dad on his 89th birthday. We all had some good laughs regarding my rendition and I was told to keep my day job, ha. And yes, glad we were all together to celebrate!
I wondered about the boot-camp and have thought about signing up. Would love to go to the center in person … but they do not accept my insurance and with traffic, it would probably take two-hours each way, so the boot-camp is ideal.
So even if you walk and do aerobic/Qigong and other classes, machines on your own, you feel Bootcamp is worthwhile?, good to know.
I hope my numbers are better next time.
Always nice to ‘chat’ with you and I appreciate your good advice and information-sharing.
September 3, 2019 at 12:07 pm #21111
Good to hear from you again Lorraine! So glad you did your rendition of Happy BD for your granddad! YES, I think pulmonary rehab bootcamp is DEFINITELY worth it !!! Finished day 9 today. There was a discount coupon again yesterday. 50 new members recently. I think same instructors as you would have in NYC without the traffic. http://www.pulmonarywellness.com
September 3, 2019 at 2:12 pm #21135
Thank you so much Taleena for your thorough response to my questions about declining DLCO readings. Living on a small island in the Caribbean, luckily not in the path of hurricane Dorian, I do have very limited access to a good pulmonologist that visits once every 2 or 3 months and phone calls are not accepted.
I definitely have GERD and had a Nissen Fundoplication operation at Weill Cornell hospital in NY to correct that problem but it was not successful as consequent endoscopies showed continuing GERD. I do take stomach protector and use a wedge pillow.
Again, your response was very helpful and I appreciate the time you took with this valuable information.
Rene, the originator of this message via Charlene.
September 3, 2019 at 6:18 pm #21149LesleyParticipant
Hi from New Zealand! I have found this group of great interest and as there are no support groups in or near where I live -I have followed all the sharing and knowledge avidly. I am 2 plus hours from respiratory clinic held in the general Hospital, currently having 6 monthly check ups with x-ray and respiratory tests, then a chat with physician. This is 3 years with PF for me, and latest scan shows “stable”, which I will be discussing at next check up in a month. I do my best to keep fit lung-wise. Walk a few kms, do a circuit at the gym twice a week, swim and cycle when weather permits. I am on no mess so far, though next step I know would be immunosuppressive..😣..hoping not for sometime yet. Trying not to overthink the future..I am 70 this year, and still do reception at dental practice 4 afternoons a week. I just try your “carry on as normal”..until something changes. Best regards to all with this wretched disease.
September 3, 2019 at 7:09 pm #21152Mark KoziolParticipant
Hello Lesley, I am glad you have reached out. You are doing very well. The PF is a complicated disease as we never know how the disease will manifest. I hope your disease remains stable and you are able to continue with your physical activity. This is great to hear. Best wishes, Mark.
September 4, 2019 at 11:32 am #21164
Hello Leslie – it just seems amazing to me that we can talk to people from all over the earth! Sounds like you are more like a 50 year old than 70! Good for you! Keep on keeping on! (I am 74 but have never been a big exerciser. Trying to change that now.) Linda Williams
September 6, 2019 at 9:57 am #21180Brian SowterParticipant
I was very interested to hear the comment by Taleena Koch that DLCO is affected by GERD. I have IPF and very severe GERD as a result of gasrtric surgery and although my FVC is normal I have relatively poor DCLO ranging eraticaly from 30% to 70% over the last 5 years. It has been suggested that the GERD caused the IPF.
I wonder Taleena ( @taleenakoch ) , if you could point me to any evidence/research about GERD and DCLO? Or is this personal experience? I am wondering if I would get a better DLCO reading if I take extra antacids a day or so before taking the DCLO test. I might try it next time.
- This reply was modified 1 year, 7 months ago by Charlene Marshall. Reason: tagging
September 10, 2019 at 11:12 am #21220
Hi Jim Nox
I wish you good results from Metformin. Had recently read an article that it was being trialed for PF. A drug so much cheaper than Esbriet or OFEV. Please let us know how your results come out using it. How long will you be on it before tested again? 6 months? 1 yr?
Praying all goes well. Linda Williams
September 10, 2019 at 11:21 am #21212
Will be thinking of you more than usual today. 🙏🙏💕
September 11, 2019 at 8:52 am #21250
Thank you so much Linda!
September 29, 2019 at 9:27 am #21469Susan HowittParticipant
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
January 25, 2020 at 2:01 pm #22680
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].
January 28, 2020 at 7:10 pm #22749Timothy BlackParticipant
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.
January 28, 2020 at 7:17 pm #22752
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.
January 30, 2020 at 3:54 pm #22783Malcolm MannParticipant
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.
February 2, 2020 at 8:12 am #22797
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!
February 2, 2020 at 3:26 pm #22803Malcolm MannParticipant
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.
- This reply was modified 1 year, 2 months ago by Malcolm Mann.
February 3, 2020 at 8:36 pm #22819
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!
February 4, 2020 at 3:13 pm #22836Anne PhilibenParticipant
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.
February 4, 2020 at 5:15 pm #22839Glenda RoulandParticipant
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
February 5, 2020 at 7:50 am #22844
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!
February 5, 2020 at 8:01 am #22847
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?
February 25, 2020 at 12:32 pm #23124Luke R MatthewsParticipant
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.
February 25, 2020 at 1:16 pm #23127Mark KoziolParticipant
Hello Luke, thank you immensely for sharing your recent experiences. The information you have provided is beneficial for other forum members. Take care, Mark
February 27, 2021 at 8:34 am #27521MarianneParticipant
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.
February 28, 2021 at 7:42 pm #27524
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.
February 28, 2021 at 8:37 pm #27529MarianneParticipant
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.
March 2, 2021 at 4:57 pm #27540Rachel NoreneParticipant
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??
March 2, 2021 at 8:31 pm #27549
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.
- This reply was modified 1 month, 1 week ago by Charlene Marshall.
March 2, 2021 at 9:38 pm #27554
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 🙂
March 7, 2021 at 1:10 am #27621
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?
March 7, 2021 at 6:16 am #27623
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.
March 7, 2021 at 4:09 pm #27631
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.
March 9, 2021 at 9:29 am #27637
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.
March 9, 2021 at 2:47 pm #27641
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.
- This reply was modified 1 month ago by Charlene Marshall. Reason: tagging
March 12, 2021 at 2:08 pm #27691LnourParticipant
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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