- This topic has 24 replies, 11 voices, and was last updated 1 year, 10 months ago by Christie Patient.
June 19, 2021 at 8:57 am #28946Anonymous
Hello everybody i have IPF and <b>Emphysema, sleep apnea and heart disease i do not have any cough at all ,all i have is breathlessness my FVC is always over 5 my oxygen level usually 96 but drops a lot when i walk .I take ofev for ipf and a lot of heart medicine like clopidogrel asprin and statins ,lanzoprazle as my reflux valve is not working I do not know if these drugs interact as some days i feel sick but other i am fine I was wondering how my Spirometry is usually near normal</b>
June 19, 2021 at 9:24 am #28947Anonymous
Just done my spirometry here are results FEV1 3.54 86% FVC 5.25 96% FEV1/FVC Ratio 67% its usually 69% Anyone get these numbers?
June 22, 2021 at 4:40 pm #28975
May I ask how far your oxygen drops when walking?? I have a pulse oximeter but I was told that when your walking it is not accurate because I’m moving or moving my finger?? I was told you had to be still.
June 22, 2021 at 5:32 pm #28976
I had a spirometry test done but my pulmonologist never explained it to me. I’m not asking for medical advice just wondering if anyone knows about numbers? FVC actual:3.78 predicted:3.68 ,%predicted:103,CI range:2.96. All these columes will be in order:
Actual, predicted, % predicted
DLCO[HB]:SAME AS ABOVE
THIS WAS DONE MARCH 18 THIS YEAR
June 22, 2021 at 9:26 am #28967BobParticipant
Now in my 6th year since diagnosis. Never had the IPF cough but needed some coughing early morning to dislodge mucus in throat and roof of mouth. This is hard work and takes 10 to 15 minutes but on some mornings I don’t need to do this.
June 22, 2021 at 9:18 pm #28984
I’m in the same situation as Bob. No IPF cough. Frequently, not always, early morning cough to clear mouth and throat. I’d sure like to figure out what’s different about the mornings that I don’t have problem. So far I have no clue.
June 24, 2021 at 4:51 pm #28998
Im not a pulmonologist but the FEV1 and FVC means the following:
FEV1 is the volume of air you blow out (expire) that first second of the test. That changes with age and disease.
The FVC is the Forced Vital Capacity or how much the lungs can hold.
The ratio of FEV to FVC is normally 80% meaning the forced air you expire in one second should be 80% of the lung volume. That changes as you get older in general
IPF is a Restrictive lung disease so the FVC goes down (lung can’t expand as much) as does the FEV1 but the reduction in FEV1 is less than the FVC SO that often makes the FEV/FVC to be higher than 80% (0.8). In an obstructive disease like COPD the ratio is often <70%.
My ratio at age 66 (and also BMI affects this so increased weight lowers the ratio) is supposed to be 75% and my ratio is 84% so I’m 113% of expected.
Tammy i don’t know your age but your numbers look slightly better than normal (108%) but it’s the trend over time that matters most.
Anonymous—you have great numbers but the ratio is low. Do you have COPD ? This is all very age-dependent and also weight plays a role. And if you have a cold or bad wheezing when you do test—need to repeat the PFTs if the results show worsening
Sorry if I’ve confused everyone. I will talk in the DLCO later.
Don Salzberg Mad
June 25, 2021 at 12:20 pm #29015Kathleen RyanParticipant
Thank you for the explanation. I’ve often wondered what it all meant!
June 30, 2021 at 4:30 pm #29070
Thanks for that information, sure helps to be More educated
July 27, 2021 at 3:38 pm #29332morton campbellParticipant
June 24, 2021 at 5:38 pm #28999
<p style=”text-align: center;”>I am 49 years old and 207lbs. When you say ratio is low what does that mean?</p>
June 24, 2021 at 10:37 pm #29007
From what I’ve read with IPF it’s not unusual for the ratio to be >80% because the reduction in FEV1 is less that the reduction in FVC. You should ask your pulmonologist. You also have obstructive lung disease (emphysema) and that lowers the ratio. Harder for you to exhale. Possibly losing weight (if you have a high BMI) can help the FEV1. I read your first post. Your emphysema (COPD) is likely why the ratio is low. But mainly is the ratio trend stable. How is your DLCO? I find how I feel (fatigue; foggy; etc) doesn’t often correlate to my oxygen levels or spirometer. One thing that’s clear after reading others is that everyone is different despite often having the same disease. I never ever smoked but I read that many patients who get IPF had heavy second hand smoke exposure as kids. I’m 66 and most kids 60 years ago had parent(s) that smoked. Let’s pray the next generation have less of this if that’s truly a cause 50-60 years later!!! Don
July 3, 2021 at 5:36 am #29098Malcolm MannParticipant
I have had the cough for 15 odd years, well before IPF was diagnosed in 2015, the cough is still with me. Nothing seems to reduce the coughing, the medical fraternity seem to suggest I just live with it.
There are a vast range of triggers but it is probably worse in the morning.
July 3, 2021 at 9:10 am #29099
Is your cough a dry cough? Or a productive cough (do you cough up mucus/sputum that you swallow or spit out)? If it is a productive cough (as mine is), I have a story to tell and a bunch more questions that might be helpful. Thanks!
July 3, 2021 at 5:26 pm #29102
My main challenge is my productive refractory coughing
with phegm. I have been taking Benzonatate pearls, and a
chinese tea capsules for cough which help. Does anyone have
similar issues? Thanks
July 27, 2021 at 3:42 pm #29333morton campbellParticipant
I HAVE HAD A CLEAR MUCUS COUGH SINCE DIAGNOSED WITH IPF. I HAVE EMPTY WATER BOTTLES TO SPIT IN ALL OVER THE HOUSE.
July 5, 2021 at 2:21 am #29105Malcolm MannParticipant
Productive in the mornings, not so much later in the day, also post nasal drip again mainly in the mornings. the post morning cough is dry annoying and brought on by exercise, bending down, stress, cold air, often when I’m trying to talk on the phone.
They have been prescribed steroidal nasal sprays and antibiotics, neither produced any benefit in my case.
It’s no great inconvenience, compared to some people here I’m blessed, but it is anoying.
July 6, 2021 at 1:45 pm #29112
Let me first say I’m not a doctor and do not play one on TV.
Decades ago I was diagnosed with chronic bronchitis with the primary symptoms being chest wheezing, crackling and chronic productive cough. I was told nothing could be done about it and given inhalers to ease symptoms. I also suffered from sinus pressure & drainage, sense of pressure/swelling in ears, forehead, around left eye, stiffness in joints, acne like rash on nose and upper cheeks and back/shoulders. I named it chronic systemic inflammation. CTs, MRIs, nasal endoscopy showed nothing. I floated the idea a number of times over the decades that I might have a bacterial or fungal or ? infection and suggest that sputum/mucus cultures might find something. I was repeatedly told it wasn’t indicated and wouldn’t show anything. I was diagnosed with IPF 2.5 years ago and a about a year after that I was seen by an intern at the clinic and conveyed to him the above chronic systemic inflammation symptoms and suggested a sputum culture. He said sure and wrote up the lab order. Bingo – A bacterial infection, heavy infestation. After a double course of antibiotic, my symptoms improved but I still felt there was something more. Another sputum culture lab order – BINGO – a second/different bacterial infection, heavy infestation. After another double course of a different antibiotic, the chronic system inflammation symptoms I mentioned above all disappeared. My chronic bronchitis like symptoms, the wheezing, crackling and productive cough have become less severe over time. I’m not suggestion you or others have bacterial infections like I did, that’s my story.
Like you, my coughing used to be triggered by lots of things including starting to talk. Now, for the most part, I initiate my coughing intentionally for the purpose of loosening & coughing up sputum. It is my sense/thinking that, over time, I have reduced the amount of sputum buildup that was normally collecting there. Note that I do not claim that my O2/CO2 lung function has improved. However, I am definitely breathing easier, with less effort, and coughing and that results my feeling better and being more interested in engaging in higher levels of physical and social activity.
Of course the sputum keeps getting replaced so you have to keep working at it. How do I work at it?
Note- I cleared the following with my Dr. first! I take bromelain and D-Hist (you can google them) to assist in loosening up sputum. Several times per week I do deep/max inhale and exhale exercise while seated and gentle /easy twisting/stretching. This triggers coughing and you soon figure out what stretches and twists are productive. Any sort of work/exercise with sufficient exertion to get your heart rate up for cardio exercise and use supplemental oxygen to keep your O2 saturation up.
I wish you well and hope that might be able to get the cough more under control.
July 11, 2021 at 12:25 am #29192
Thanks for sharing what happened to you. My primary challenge now is chronic refractory coughing with lots of phegm, yellow color. I will ask my pulmonologist to request all those test. I will also follow what u did. At this juncture we are open to try anything.
July 5, 2021 at 9:58 am #29106
I too am blessed without the issue of coughing. Throat clearing/mucous is clearly Part of this disease which I’ve had since my diagnosis. Also causes hoarseness.
I have retired from my Ophthalmology practice but I cared for a patient (after her work up) who had developed a chronic non-productive cough that lasted almost two years. She stated “I had every test that could possibly have been done.” It turns out she was having a reaction to her glaucoma drop (Lumigan) and when she accidentally ran out (and was off the drops for a week) her coughing stopped!! It returned when she restarted the drops!!! Two years of test after test!!!!! Eye Drops can cause localized and systemic symptoms (as they are absorbed into your bloodstream) so just something to consider. I have tried Flonase and Nasocort and Mucinex for mucous—no benefit. A recent trial study using an antibiotic for coughing showed no benefit.
July 11, 2021 at 10:12 am #29195
Again, I’m not a Dr. and have no medical training of any kind. Consider the source.
Phlegm with yellow color… When I had the bacterial lung infections, yellow was the color of the thicker, tacky phlegm that I could, sometimes, get coughed up from the lungs. Sputum culture of this phlegm yielded the bacterial infection, heavy infestation lab test results.
Sometimes… Getting good sputum samples from deep in the lungs is difficult to do. Samples are almost always contaminated by the plethora of normal oral, nasal, sinus, throat, upper airway stuff that can mask what little target phlegm we are trying to get evaluated. I had several ‘negative’ results before finally getting ‘positive – heavy infestation’ results. A credentialed respiratory therapist cousin of mine confirms this difficulty. There are complicated clinical procedures involving putting vacuum suction tubes down into lungs to collect samples.
Here’s what I learned and did… I never knew when I was going to be able to get up a ‘good’ uncontaminated sample. So I kept a few sample cups around and ready, particularly at night, ready for morning clearing coughs. When I sensed that what I coughed up was thicker, tackier and with little contamination, I spit it in the cup and sealed it up. I don’t think a large sample is required and I didn’t try to double up samples in a cup. If it was going to be more than a couple hours before the sample could get to the lab, I put the cup, in its plastic bag, in another container with ice cubes to keep it cool.
I did a web search this AM on phlegm and found the following link interesting…
Phlegm: Colors, textures, and home care (medicalnewstoday.com)
I’m rooting for you!
July 29, 2021 at 5:04 pm #29374Christine McCannParticipant
I have COPD, Emphysema & IPF I hardly ever cough and have no mucus or phlegm, which is a good thing I think. I have been on Esbriet fora little over 3 yrs and was doing very well after I figured out how to take it so I wouldn’t get nauseousness. Then because of Covid, transportation problems and Dr. being booked solid for months in advance a year went by without an appointment so he wouldn’t renew my prescription and I can not get an appointment with anyone else either until Nov so I am off the meds. I have to say I don’t feel bad yet I even feel a little better than when I was on the meds, but I know that won’t last, I just hope I can live without too many complications until my appointment in Nov. Yes I tried every Dr. Personally I think it is criminal.
July 28, 2021 at 4:30 pm #29359
Thanks for info, have an appointment with my
pulmonologist and will request those lab test for my phlegm. Will also keep u posted for results like you did. Best of luck my friend!!
July 29, 2021 at 5:07 pm #29375Christine McCannParticipant
have COPD, Emphysema & IPF I hardly ever cough and have no mucus or phlegm, which is a good thing I think. I have been on Esbriet fora little over 3 yrs and was doing very well after I figured out how to take it so I wouldn’t get nauseousness. Then because of Covid, transportation problems and Dr. being booked solid for months in advance a year went by without an appointment so he wouldn’t renew my prescription and I can not get an appointment with anyone else either until Nov so I am off the meds. I have to say I don’t feel bad yet I even feel a little better than when I was on the meds, but I know that won’t last, I just hope I can live without too many complications until my appointment in Nov. Yes I tried every Dr. Personally I think it is criminal.
July 30, 2021 at 3:59 pm #29380Christie PatientParticipant
@mahzie Christine, I am so sorry to hear it’s been such an ordeal to get into the doc’s office and get your prescription renewed. I agree, criminal. Especially with all of the accommodations people were (suddenly, magically) able to make during the height of COVID, like e-visits. I hope those accommodations last into the future and are improved upon so that things are more accessible all around. Doesn’t much help your situation now though, I know.
My advice would be to just be relentless with attempts to get in. Call every day if you have to. It sucks, but sometimes the squeaky wheel gets the grease, or at least you’ll be bugging them enough to know when cancellations happen.
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