Puzzled (as always)

[challny]

I don't post much, and when I do it seems I'm always complaining. Sorry. Anyway, I had a PFT as pulmo office in August. I was not feeling too well. Mainly SOB. She tells me my FEV1 is 75 percent and she can't understand why I feel poorly. So recently see my GP, who seems much more interested in my health, and tell him I don't believe the results of that PFT. He says let's do another. This time FEV1 is 79 percent, and lab tech does it twice to make sure. BUT, lab tech also says my DLCO is 66 percent and has declined from 90 something in 2016. Well, I think that my be my answer. Then GP's nurse calls and says doc looked at results and said my PFT was "normal." I ask nurse what does that mean? Normal for a normal person? Normal for someone with COPD Stage 1? Normal for COPD Stage 2? etc. Of course nurse cannot answer. I'm 68 and not on 02. Oximeter on finger always reads around 98. I have twice in last year asked pulmo if I'm a CO2 retainer and she replies No. But lab tech says could be some air trapping. I routinely walk 2-3 miles daily, but generally feel at least a little SOB all the time. Sometimes worse than other times. Any thoughts? Sorry for length.

[Maricopa]

Your numbers look great compared to mine. I wonder if you may be anemic or a heart issue? There are several things besides lungs that can cause sob.

[Katinka46]

Your gas exchange is down, and you don’t feel right. Push for more explanations. COPD is common and sometimes doctors assume it’s that and don’t question the diagnosis enough.

Kate

[Katinka46]

I have just looked back at your previous posts. You know there is something wrong so don’t let them fob you off by saying that your FEV1 is fine. There are other conditions that would produce normal FEV1. What are the other results from your PFT?

K

[challny in reply to Katinka46]

Katinka46 I really don't know more than what I've stated. They don't tell me much, except that I'm doing well. But I keep saying, Well, I'm not feeling so well. I'm supposed to see both of them (pulmo and GP) within the next couple of months. I will have to press for more details. I used to think FEV1 was the key number, but I'm beginning to understand that it's just part of a larger equation. Actually, I'm breathing pretty good today. That's another strange thing about this disease, at least for me. Some days I feel sure that I need to be on oxygen and other days I think maybe I can walk 4 miles today instead of 2 or 3. But let me be clear on one thing -- both doctors have diagnosed me with emphysema. So it's not "all in my head" as some friends and family members have at times suggested. My prescribed inhalers are Spiriva, Symbicort and Abuterol. I don't always use the abuterol but I take the other two daily, though I don't feel like they help much. I hope you are feeling well.

[jackdup in reply to challny]

Do you also have asthma? The reason I ask is because Symbicort is a steroid inhaler and it is odd that someone who has an FEV1 of 79% of predicted would be on a steroid inhaler unless you also have asthma. I’m no doctor so there may be other reasons you are on a steroid inhaler but would check and if there is no reason for having a steroid you could maybe get it changed to one without a steroid.

[challny in reply to jackdup]

@jackdup it's interesting that you should ask that. At the very beginning, my pulmo said I had "some" asthma. I actually feel like that's not true, but I'm sure she knows more than I do.

[Katinka46]

Your diagnosis of emphysema is interesting. Way back in June 2010 I was diagnosed with emphysema. The doctor I saw then retired and unfortunately his successor didn’t look at the PFT. Eight years later I was diagnosed with obliterative bronchiolitis which looks like emphysema. I couldn’t possibly diagnose your condition obviously but I think you need to push for more clarity.

Kate x

[challny]

Katinka46 I don't even know what obliterative bronchiolitis is. I will have to Google it. What are your symptoms and treatment? I have heard people say that you cannot really diagnose emphysema without a CT scan. Just a few weeks ago my pulmo told me that she would not order one because based on my lung x-ray she saw nothing to warrant that. So my diagnosis was made separately by both my pulmo and GP based on PFT and chest x-ray and probably the fact that excessive mucus production and coughing are not components of my disease. My primary symptom is SOB and the accompanying fatigue and lack of sleep. I don't have sufficient reason to doubt them. My pulmo works for a large group of pulmonary specialists and my GP is at a nearby large hospital. I have to assume they know what they're doing. Of course I smoked for many years, but had stopped more than 20 years before my diagnosis. I don't even know what stage I'm at, but I would assume it is moderate. But was we all know, given the progressive nature of the disease, that could evolve to something worse given time. I hope you are doing well.

[challny]

Hidden thanks for your reply, which I find interesting. Just a few weeks ago my pulmo suggested I might want to see a second opinion. I'm not sure if she was just trying to get rid of me. My GP seems more interested in my health, but also seems to think anxiety could be a major contributor in my case. He actually apologized to me for not making me feel better. I did have a heart cath when I was first diagnosed 3 and a half years ago. I've always considered the possibility of a heart problem. I was a long time smoker, but quit more than 20 years before my diagnosis. I hope you are feeling well.