PFTs and a Reduction in DLCO Number.

[Linda Williams]

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.

Linda Williams

[Denny]

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!

[Charlene]

Glad you continue to find them beneficial Denny, that is wonderful 🙂

[Lorraine]

@deliassen

Hi Denny: That is good news about your test results. Can you tell me the names of your supplements? Thank you, Lorraine

[Linda Williams]

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>
Linda Williams

[Charlene]

Hi Linda,

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!

Charlene.

[Lorraine]

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

[Charlene]

Hi Linda,

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.

Kind regards,
Charlene.

[jim nox]

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.

 

[Charlene]

@jimnox

 

Hi Jim,

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.
Charlene.

[Ed]

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.

[Charlene]

Hi Ed,

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,
Charlene.

[Lorraine]

@edknn

Hi Ed: Was your wife doing anything different that could have help the improved numbers. For example, Pulmonary Rehab or using Voldyne 5000 Incentive Spirometer. I hope she continues to do well. Lorraine

[Ed]

My wife did nothing. The DLCO came back all by itself.

[Lorraine]

Hi Ed: Thank you for your reply. Best wishes to you and your wife. Lorraine

[Ed]

Best wishes to you too Lorraine.

[Charlene]

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!
Charlene.

[Glenda Rouland]

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

[Charlene]

Hi Glenda,

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.

Take care,
Charlene.

[Luke R Matthews]

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.

[Charlene]

Hi Luke,

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.
Charlene.

[Linda Williams]

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.

Linda Williams

[Charlene]

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!
Charlene.

[Taleena Koch]

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.

[Charlene]

@taleenakoch,

 

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.

Kind regards.

[Linda Williams]

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?

Linda Williams

 

[Charlene]

Hi Linda,

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) 🙂
Charlene.

[Michael Kessler]

Hi there:

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.

 

 

 

 

 

[Linda Williams]

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.

Linda Williams

[Charlene]

Hi Linda,

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 🙂
Charlene.

[Nan]

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.

[Taleena Koch]

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!

[Charlene]

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.
Cheers!

[Charlene]

Hi Nan,

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!

Chat soon,
Charlene.

[May Mya Win]

Dear Charlene,

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

[Charlene]

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.
Charlene.

[Linda Williams]

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.

Linda Williams

 

[Linda Williams]

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!

Linda Williams

 

[Lorraine]

Hi Linda:

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.

Best wishes,

Lorraine

[Linda Williams]

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

Linda Williams

[Rene Hakkenberg]

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.

[Lesley]

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.

[Mark Koziol]

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.

[Linda Williams]

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

[Brian Sowter]

Hello Everybody

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.

[Linda Williams]

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

[Linda Williams]

Hi Charlene,

Will be thinking of you more than usual today. ???

Linda Williams

[Charlene]

Thank you so much Linda!