How low can it go?

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Having documented a significant, but relatively slow decline in my lung function over the past decade, Ive often wondered what life must be like for other asthmatics who have a baseline FEV1 below 25%. Well, now I know.

According to the last spirometry results, which I did for my annual SARP follow up visit last week, my baseline FEV1 is now down to 23%. We’re talking less than 1/4 of normal. Equally troubling is that my FVC has taken a hit as well, at only 39%. From a purely asthma standpoint that doesn’t leave a lot of reserve for the lungs to handle an acute flare up. Even the mildest exacerbation can be life threatening and throwing respiratory infection in the mix, would pretty much guarantee the end. Lucky for me, I still have a little bit of airway responsiveness left. During this last test my FEV1 actually increased to 31% after 6 puffs of Albuterol. The problem is that my FEV1 drops back down into the 20’s again after just an hour or two. Im on daily prednisone and have Ive tried every long acting bronchodilator out there, but nothing keeps my numbers up for very long. Needless to say, it ultra important for me to do whatever it takes to keep flare ups from getting out of control.

Getting back to that original question of what it feels like to live with numbers like this, personally Im not really noticing a huge difference while at rest, but I can sure tell a difference when I exert myself. Walking on even the slightest incline for example, is twice as difficult for me as it was just a year ago. I also get notably more short of breath when I try to do upper body exercises, such as lifting dumbbells. Interestingly, even with a super low FEV1’s, my O2 sats have remained pretty constant at 91-95%, proving that the primary problem is with my airways, and not my alveoli, as is usually the case when distinguishing asthma from COPD.

So how low are these numbers gonna get?

So far Ive managed to adapt pretty well to the changes in my lung function, but at point will it become a total struggle to breath all the time? At what number do the lungs trap so much air, or take in so little air that oxygenation is affected? At what number does the heart and other vitals organs start to fail as well? Is there a special number or warning sign on the test that will say.. “YOU HAVE ATTAINED THE LOWEST POSSIBLE FEV1 COMPATIBLE WITH LIFE”? Yikes!

Hey, Im a Respiratory Therapist and I should know these things, but I don’t, and I don’t think anyone really knows for sure. As an RT, Ive had patients with end-stage COPD or Cystic Fibrosis who had FEV1s in the teens just prior to receiving a lung a transplant or dying from other complications. Ive also worked with paraplegics and people with neuromuscular conditions who naturally had super low numbers and who were eventually dependent on ventilators to stay alive, but there’s really no data on asthmatics with similarly low PFT numbers.

Of course spirometry alone is not the best way to determine longevity in people with obstructive lung diseases, the BODE Index is a much more accurate tool. It uses a multidimensional grading system that takes into account, not only FEV1, but also body mass index, the degree of breathlessness a person experiences, and exercise capacity. If I plug my numbers into that index, my outlook appears to be a lot more rosier than if you just go by my FEV1 and FVC. But then again, the BODE Index was designed for primarily for COPD, not asthma. It doesn’t really take into account, the frequency, the unpredictability and/or severity of flare ups. In any case, if you look at the BODE index closely, you’ll see how much exercise influences the other factors, and in that department I believe Im doing very well.

Still, an FEV1 in the low 20’s is not a good sign and Im sure it will go lower. I try not to dwell on it, but there are times, like when Im flaring, or Im in the hospital suffering through a bad attack or even when Im playing the role of research subject, where it really hits home. Times like these it’s really hard to ignore. For the most part though, I try to stay positive and focus on the more enjoyable aspects of life. Albeit more limited , I still exercise everyday, I keep busy with a million other things and I continue to make semi long term plans as if my lungs were totally normal.

It’ll be interesting to see what my numbers are when they do a more precise PFT and a walk test in a few weeks. If my BODE score is still in the 3-5 range, Im totally cool with that.

http://breathinstephen.com/