What I didn't know

[challny]

Just had another PFT. Stupid me always thought FEV1 was THE important number. The nurse that administered the test said my FEV1 was 79 percent. I believe that's a good number with someone who has been diagnosed with emphysema. But my diffusion number was not so good: 66 percent, and down quite a bit from 2016. I have been saying that my breathing has been getting worse, and that could be the reason, I'm guessing. The test has not been looked at yet by a pulmonologist. I'm 68 and was first diagnosed about 3 and a half years ago. Finger oximeter read 98.

[skischool]

medicalnewstoday.com/articl...

For your information

66 % is below normal for an average male but not dramatically so,normal range is 80% to 120% of predicted value.i have very severe emphysema and mine is around the 35% mark which given my severity is the reason i need o2 on exertion as gases do not transfer in sufficient quantity and time to keep my blood saturated with oxygen.

Just mentioned that so you are not too alarmed by the figures but it does seem likely that it may be playing a part in your breathlessness?

Best wishes Ski's and Scruff's

[challny in reply to skischool]

Thanks, Skis. This test was done in my GP's medical complex, and the test seemed far more detailed than the ones I've been given by my pulmonologist. I'm now wondering if I should find a new pulmo. She does nothing but tell me I'm doing great after I've told her I'm so short of breath I can't sleep or do many things I was able to do just a year ago. My GP seems much more sensitive to my concerns. Here's wishing all the best to you in our common struggle with this malady.

[skischool in reply to challny]

Of course the DLCO figures are only a part of a much bigger picture with regard to the lungs,i am somewhat surprised that even with only 66 % you would be struggling so much so maybe a good long chat with your pulmonologist is in order,he/she will also be taking into account your heart and other factors that also relate to breathing and gas transfer issues.

[challny in reply to skischool]

Thanks for the reply, Skis. We can always count on you for sound advice. Hope you are doing well.

[skischool in reply to challny]

This might interest you,the science behind testing.

khanacademy.org/science/hea...

[Maricopa in reply to challny]

There are several things that factor in to our sob. Heart of course is affected when the lungs are damaged. The alveoli field can be diminishing due to damage alveolus and decrease our gas diffusion. Cor pulmonale. All of these things make each case different so we never can truly compare ourselves to others. We see numbers and we’re thinking well their numbers look better than mine. But they may be more sob than you and vice versa. We just don’t know every detail that is occurring in our bodies.

[challny]

Thanks for the reply, RedSox. My pulmo once suggested that I might need a sleep study, but she never scheduled one for me, left it up to me. I'm actually losing a bit of faith in her. Today's PFT was done in the lab at my GP's office. It is much more complex than the one that was performed by my pulmo. You would think it would be the other way around. My GP also seems much more interested in me than my pulmonologist. Believe me, I have considered a sleep study, and now I just might push for one. I hope you're doing well.

[jackdup in reply to challny]

Hard to say what your pulmonologist is thinking and why she would not have done a full PFT. The only thing I can think of is that seeing your FEV1% of predicted at 79% didn’t feel further investigation was needed but suspect she is wrong in your case. Definitely worth telling her about your breathlessness and to have her follow up on the sleep study as RedSox suggested.

[NYNY]

I too have been having SOB for quite some time and it has been getting progressively worse. Basically, I cannot take a deep breath and it's frustrating. My last Spirometry test has my FEV1 at 88% and DCLO at 85%, the only thing highlighted was VA at 81%. I have been referred by my pulmonary doctor to have a sleep test done (tonight I report for the overnight study) and will get the results back within 2 weeks. My wife states I do not snore but after a night's sleep I do not feel rested. The doctor feels like there is a lung issue going on as previous blood work shows a retention of CO2. He did prescribe Spiriva but after second day I felt tightness in airway that lasted all day and into the wee hours of the morning. That put the fear of God into me. I hesitate to try again. Pulmonary doctor stated after reviewing numerous chest CT scans that I do not have COPD nor Emphysema. I find that hard to believe as I did smoke for over 40 years. I am 67 YO. I was just recently diagnosed with Diastolic Dysfunction after recent heart Catherization and was told it was mild and that medication would be course of treatment. I am on diuretic but it hasn't helped with my SOB. So hoping that the sleep study sheds some light on it as I am running out of ideas. Just wondering if it is and they treat with CPAP during sleep how does it help you with daytime shortness of breath? Sure hope things work out for you. My prayers are with you

[Izb1]

I used to play centre forward when at school , long time ago. You have peaked my interest Redsox and might have a look at what is near to me come the better weather x

[NYNY]

I know that I have been thinking the same way. For instance my situation has been going on since 2011 and I have ruled out a number of things. First started with my weight and usage of two pain medications prescribed in 2010. I messed my back up and have herniation disc issues lumbar region. L2 was the culprit. I was prescribed Lyrica (cause of weight gain) and tramadol. Went on paleo diet after doctor stated I was fat and she was right. Stopped medications over 6 month period starting in 2012. I weighed 187 pounds and got down to 146 pounds and felt like crap. Five foot 7 inches and it was within a good range but still felt awful. Didn't notice shortness of breath. I was still smoking a half pack a day. 2014 was a bad year for gut issues, GERD, swallowing issues, everything in the book hit me. January 2015 quit smoking as hip replacement in February 2015. Picked up smoking again September 2016 and back to 1/2 pack a day. Never really remember inhaling deep in my lungs but none the less still smoked. We know secondary smoke is an issue. SOB again in December 2016 during heavy pollen season and assumed it must be allergy and colder weather issues. A lot of rain and Mold and dry heat etc.etc.etc. back and forth to doctors. one sent me to a shrink and that wan't the issue. Of course the heart doctor stated the issue is diastolic dysfuntion but medication isn't helping me as he stated it would. Been to allergist and evidently that isn't the issue, been to pulmonary doctor and I am retaining CO2 but very mild and that can cause SOB, I am going to do sleep study test tonight and see what they have to say. September 2019 had a chest strain and was told that can cause SOB. Did physical therapy and it seemed to help a little but still have SOB. Running out of ideas. So REDSOX I am with you on this as no one is on the same page with me and the checklist of professionals and ideas is running out. Gotta run to another doctor's appointment. Check in when I get the results of the sleep study test. Cheers!

[challny]

By the way, I have twice specifically asked my pulmonologist if I was a C02 retainer and both times she said no. But don't those diffusion numbers refute that? I'm confused. But I am def. SOB almost all the time. And that can vary. Sometimes not too bad, sometimes quite bad -- but always at least a little SOB. As I said, I'm confused, but my doctors seem to be as well. My GP just last week actually apologized to me for failing to help me feel better. He does not think I'm "crazy," but he does think I have high anxiety directly related to my condition and that it could contribute to my SOB. I agree with the anxiety part, but I don't think that's the real reason.

[challny]

RedSox so my next question would be: If my FEV1 is decent and has actually improved since 2016, is there something that can be done to specifically target DLC?

[Blackcat99]

I get very, very confused with all the different terms + their abbreviations, and have no real idea what most of them are about. Medics very rarely seem to offer any of this info to me anyway and, those that do tend to fire it at me so quickly that I'm just even more befuddled!

Does anyone know of a full (user-friendly) article on it all somewhere, so that I could swot up on the various tests, and what are the acceptable levels for them all?

[challny]

RedSox the sleep study intrigues me. You say you feel 100 percent better with Cpap machine. Could you give me an example of how you felt before and after? As far as I'm concerned, inhalers seem to do nothing for me. I find myself doing less and less. I'm able to walk fair distances, but there are no hills at all in my neighborhood. I walked 3 miles yesterday, but I felt like crap the whole way. I usually walk 2-3 miles every day and I've been doing that for years. I've given up playing golf, which was something I loved. I did mow my small lawn a couple of weeks ago, but it was not easy. Since my FEV1 is fairly decent, it has to be C02 that makes me so SOB. I'm slightly SOB even when idle. In fact, I would not be able to sleep if my GP did not give me klonopin. Did you go to a sleep lab for your study? I've heard they now have equipment that you can take him for the study. I really agree with you about viewing lung diseases specifically. My BIL is 81 and has chronic bronchitis but it rarely slows him down unless he gets a chest infection. He still works full-time. I think emphysema and CB are vastly different. I appreciate your input and hope you are well.

[oulpete2]

Great oxygen levels, little probs there, mine seldom gets into the 90’s