I suppose it was only a matter of time, but it looks like I finally made it into the mid 20’s percent club. A club I might add with very few members. The ones who manage to obtain membership are usually on continuous oxygen or severely debilitated.

All joking aside, I was pretty shocked to learn at my last SARP appointment that my baseline FEV1 had dropped below 30%, 26% to be more precise. Its one thing to be in the “Severe range“, its quite another to be in the “You need a Lung Transplant soon or else” category….but whatever

Im short of breath to some degree pretty much all time, even in between exacerbations, but as I’ve alluded to in previous posts, Ive been noticeably more breathless this past year, especially when I exert myself. Till now Ive been shrugging it off as just getting old, I had no idea there was such a measurable decline in my lung function. Amazingly, despite my decent into the 20’s club, my O2 sats remain completely normal and for the most part Im able to function just fine, albeit with a little more huffing and puffing involved. I think living with this disease all these years, along with all the fitness walking Ive done, has toughened me up. I seem to have a much higher tolerance for respiratory discomfort than many.

To put these numbers into context, I think it’s important to note that FEV1s in asthmatics (and all the other spirometry values) are generally within the normal range of 80%-100% when the person isn’t flaring. In fact I know a few severe asthmatics whose FEV1 is OVER 100% when they are well. That’s because asthma is generally a reversible condition. The airways get tight, you take a bronchodilator and steroids if needed to open them up and all is well again. But, for those of us who have FEV1s persistently below 50% despite maximal treatment, is usually an indication of permanent damage to the airway., what we call in the biz… “Fixed airflow obstruction”. This is usually seen in people with Emphysema and other Obstructive Lung diseases, but it can also happen in people who have severe chronic asthma as well. Regardless of all that, 26% is really really low for an asthmatic, or for any lung condition for that matter.

The good news, if you can call it that, is that during that test, which is known as a “Maximal Bronchodilation Response” test, there was a rapid and significant increase in my expiratory flow rates. My FEV1 shot up from 26% to 36% after inhaling a total of 6 puffs of Albuterol. That represents a 38% improvement. In lay terms, my constricted airways became less constricted
and I was able to get air in and out of the tight airways much easier after inhaling Albuterol. The problem, just like at home, is that the improvement only lasted a couple hours and then I was back to where I started in the 20’s percent range. It seems my smaller airways just cant stay open unless they’re exposed to a near constant stream of fast acting bronchodilators. Even if I chose to go back on daily oral prednisone which reduces swelling in the airways and which might improve my FEV1, we’re only talking a few percentage points and it wouldn’t change the trajectory of the disease.

But its not only about having a low FEV1, that makes my asthma different than most, I also have very low lung volumes. Unlike those with classic COPD (emphysema and /or chronic bronchitis), my forced vital capacity ( the amount of air that can be forcibly exhaled from the lungs after taking the deepest breath possible) is less than half of normal. You usually see this in conditions, such as pulmonary fibrosis and neuromuscular diseases, or pretty much any condition that causes the lung tissue itself to be come stiff or impedes the ability for the lungs to expand fully. Conditions that follow this pattern are termed “restrictive” lung diseases, as opposed to “Obstructive” diseases like asthma and COPD. I actually have elements of both Obstructive and Restrictive lung disease. A double whammy if you will.

I think its also important for people to understand, that its not just about having severely reduced lung function, its about having really severe asthma. On top of having critically low PFT numbers , I also have very sensitive airways that can close up at the drop of a hat.

To give you some idea of what I deal with, imagine if you had the lung capacity of an infant in a full grown person’s body. Now imagine that you also had really bad asthma where the slightest trigger could cause those tiny lungs to clamp up. That’s essentially what Im up against and that’s why training and successfully completely a 26.2 mile distance, even if only walking it, is such a big deal.

A good friend who saw my latest Spirometry numbers and has really bad asthma herself asked, will this impact your plans for the Rome marathon this coming Spring? It hopefully wont impact my plans to travel to Italy, but at this point Im not sure about the marathon. Its definitely getting harder and harder for me to do long distance walking. Even doing shorter distances at a slower pace is making me short of breath now. Truth is, as much as Id love to complete another marathon, for the first time ever, I have doubts. In any case, I will train as hard as I can and will take my position at the starting line at the Rome marathon and go as far as I can. Just being there in the presence of other walking or running fanatics will be worth the effort involved.

Most of us will have medical challenges that we will have to deal with sometime in our lives, am I’m no different. Mine just happens to be the constant struggle of getting air in and out of my lungs. Fortunately I’ve been blessed with a body that can somehow tolerate it better than most. Going forward Ill continue to do what Ive always done…Ill find a way to adapt and get on with life the best I can.

Wishing everyone out there a very Happy and breathable Holiday Season! Hope to see you next year Xx

Related Posts:

4 thoughts on “Welcome to the mid-20’s club!

  1. Anne says:

    Dear Stephen

    I am sorry to hear that your lung function has deteriorated further.

    Stephen, about ten years ago you were kind and helpful to me at a time when I badly needed it. Could you drop me an e-mail, please?

    I hope that you and your family have a happy Christmas and peaceful New Year.

    Best wishes


  2. Thank you Anne. Merry Christmas to you as well! You can reach me at breathinstephen@gmail.com

  3. Nekona says:

    I’m sorry this isn’t great news. I’m sorry to hear about further deterioration for your lungs. Your tenacity has always been something incredible.
    I hope that even if you can’t do the full Rome marathon, that what you can do of it it brings you a ton of joy. Safe travels and may the better breathing days outnumber the more difficult ones!

    1. Hello and thank you. I appreciate your kindness.

      Xx Steve

Leave a Reply

Your email address will not be published. Required fields are marked *

WordPress Anti-Spam by WP-SpamShield