Earlier this week I got a chance to sit down with my Pulmonologists to discuss the problem Ive been having with these acute flare-ups that seem to develop a couple hours after doing my longer walks. (Sorry, this post has a lot of medical respiratory jargon in it, but I couldn’t find a way around it)

The thing that seems to perplex everyone the most , is why the delay in onset of symptoms? Why are these exacerbations occurring several hours AFTER the exercise event. These types of flare-ups seem to be more characteristic of an allergic response than exercise induced asthma. Made even more baffling when you consider the reason I walk along the waterfront in the first place, is to avoid the inland landscape that I’m definitely allergic to.

One of the theories being floated, is that I’m not getting the appropriate anticholinergic response or coverage I should be getting from all the Atrovent I take ( Atrovent works differently then Albuterol). They think it’s possible that I’m either immune to, or that the effect of the drug is wearing off long before I finish these longer walks. A possible explanation as to why my asthma symptoms don’t surface during the walk itself , is because vigorous exercise triggers what is known as a “sympathetic response” …..the release of bronchodialator type chemicals into the blood stream that actually helps dilate the airways in asthmatics. When the exercise seizes, so does this bronchodialating effect, and all of a sudden…I have a problem breathing. (You’d think it would be the other way around.)

To test some of these theories, they’re actually going to devise a special exercise stress test to see whats going on with my lungs in real time AFTER I finish a long walk . I’ve done several exercise tests in the past , on a bike in the lab, but because I can walk such far distances without a problem, they have never been able to induce an asthmatic response in the time allowed . For this new experiment, I’m actually going walk 15 miles along my normal route on the San Francisco waterfront ( including crossing the Golden Gate bridge) and will end the walk at the doors of the UCSF airway research clinic.
As soon as I walk through those doors, their going to do a series of pulmonary function tests spaced over several hours, in hopes that they can catch any delayed symptoms or exacerbation that might occur and If my peak flows bottom out, at least I’ll be in the right place.

They haven’t told me yet, what they hope to achieve with the data they collect , other than possibly increasing my daily doses of Atrovent, but I think this will be a worth while experiment and I appreciate all the effort that my doctors and the researchers at UCSF are putting forth in trying to solve this problem.

You know , despite all the incredible things Ive accomplished through fitness and exercise, no one has ever never been able to solve the mystery as to why I sometimes get critically ill after walking. What causes it , what are the triggers, why does it happen?
Five years ago , the answer to that question would have been ” You’re crazy for doing what you’re doing…or…You’re disease is too advance… or… You’re over doing it! ” and the recommendation would have been…” Stop training for marathons” .
Well, times have sure changed. I think through all my achievements and of proving people wrong time and time again, that Ive actually gained the respect of these scientists. Now instead of telling me to stop doing marathons, they’re actually encouraging me!

One of the biggest reasons people with severe asthma or chronic lung disease don’t exercise in the first place, is for fear that they will become even more short of breath. The truth is, if you don’t exercise regularly, you risk becoming so de-conditioned that it actually gets harder to breath. Hopefully, small experiments like this will shed some light on possible solutions.

Because I’m in the middle of training for the next marathon, we’re trying to work out the logistics and the best day in which to schedule the test. I’ll be sure to post more about this experiment in the coming weeks.

Here are just a few of the wonderful people who take care of me on a regular basis and who are involved in cutting edge asthma research:

Dr Gold
Dr. Lazerus
Dr Innes

Here’s a picture of some of the UCSF clinical airway researchers ( and muah) taken a couple of years ago in Golden Gate park for the ALA’s asthma annual walk.Don't you just love the yellow shirts?

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8 thoughts on “The Great Experiment

  1. Jay says:

    Wow, good stuff here. You are fortunate to have such an agressive medical team. I’m curious as to the outcome.

    Have they ever measured your nitric oxide levels exhaled before and after excercise to see if there is a change in inflammation. I’m still of the mind frame that you are causing acute stress to your lungs each time you walk mega miles. Then, after your body recovers from all of the adrenaline, endorphins and hormones that you are creating during your walk, you crash. You’ve sucked your reserves dry and your body has nothing left to recover from the “trauma”.

    Spiriva is a longer acting anti-cholinergic. Perhaps it could smooth out your blood levels and give you longer protection.

    On another note, perhaps your situation is endogenous. You’re actually creating chemicals during your walks that are detrimental to your condition…you have an issue with lactic acid produced by your muscles.

    Steve, you’re to be commended for your fortitude and also making your trials and tribulations public.

    Bottom line: stay healthy. You are at a point where you need to be concentrating on maintaining your FEV1s. Having numerous exacerbations a year is not in your favor (as I’m sure you are aware).

    Let me know if you don’t like my armchair diagnosing .

    Looking forward to the results of your test and was glad you pulled out of this last “dip” you had. That was big!

    Stay well!

  2. Steve says:

    Hi Jay, Diagnosis away…lol I need all the help I can get.
    I must say, you’re pretty up on all this stuff. You brought up a lot of good points.

    What makes this so difficult to sort out, is that Im dealing not only with the symptoms of COPD ( ie breathstacking, air trapping etc) but also with bronchospasm , which is a totally different animal.

    Id say that about 75% of the exercise triggered exacerbations I get, are due to air-trapping, which I can deal with. It’s the other 25% which really get me in trouble, because there so unpredictable. My lungs simply clamp down…. almost like an allergic reaction.

    As far as the Spriva goes, I’m already on it. In addition I also use Atrovent my nebs every 4 hours or so.

    One of my Pulmonologists, Dr Gold ,who took part in the original atrovent clinical trials a million years ago, believes that there are individuals out there, that may require much high doses of the drug, than is normally prescribed.

    They check my nitric levels every time I go to the chest clinic ( about every 8 weeks), but they’ve never checked them during or after exercise.Im not sure how useful that would be but, I’ll be sure to mention that to them.

    Obviously, the key to this whole exercise vs asthma thing, is MODERATION…..but that wouldn’t be very fun or challenging would it.

    I’ll be sure to pass on the finding of this test to you.

    You stay healthy as well!

  3. Sus says:

    Hi Steve
    Really fantastic stuff-so interesting. Great job! And Jay too-hi again!

    On a personal note. it has always been explained to little me that the longer I keep going, the more adrenaline I am producing, and it is the stopping of the situation, exercise, ig concert, general stressy teaching work level etc, that bombs the adrenaline out so much that there is nothing left to kick ass the lungs and they clamp up. Hence I am allowed to shoot an Epipen at this moment.
    I don’t exactly have ‘exercise induced’ asthma, and because I’m always loaded up every time before and during my swims, it only really tends to hit me big time in the locker room about 20 minutes afterwards. I know that clamping up all too well. It has caused me to be quite a slower dresser post swimming, because I can’t push the lungs into doing anything much else.

    I haven’t heard of increasing the Atrovent to more than 6 hourly, but when I am in a reasonable patch, I decrease it to just am and pm nebs, so that when I start to flare it is my first step up before hitting the Pred hard.
    I was on Spiriva at the same time about 3 years ago, but again, the docs here now tend towards either or, and more a case of the Spiriva in COPDers and Atro nebs in the severe asthmas!

    The nitrous oxide tests are invaluable, but if you’re like me, you’ll be finding them really tough when you’re clogging with a big clamp down, and it also seems we need to be caught at exactly the right moment. I also bring up a very different type of sputum mid attack after exercising, so if you are a producer like me, that is also worth looking in to.
    Have you had your VC’s looked at just as the attack is imminent as that can also be another factor, particularly in a mouth breather who has just exercised outdoors. For that read, possible allergic trigger. Step up the anti H’s before exercise?

    You’re incredible. Keep it all going strong, pal!


    Sus xx

  4. Steve says:

    You’re so right about the adrenaline thing Sus. The human machine is pretty cool in that regard.

    It’s weird because I can start a walk feeling really tight, but 30-40 minutes later, the walk gets easier and the tightness is less noticeable…That’s why, even if I’m SOB in the morning, I will force myself to walk or exercise because I know that I will feel better once I get started.
    I thin this effect applies mostly to people with a strong asthma component to their disease.

    Hey, when you guys do you Nitric tests, do you use the one where you have to fly the kite across the river without letting it touch the water….lol ( They do a lot of pediatrics where I go)..

  5. Sus says:

    …. The kite flying test sounds cool! The one I do is like a car cockpit and you have to blow continuously to keep the odo in the green section else the engine stalls! Cant tell you how many times I’ve stalled it! Pretty good reflection of the amount of inflammation! And who said hospitals weren’t fun places!

    Good luck tomorrow with week 3’s training x x

  6. Sababby says:

    I hope your test brings out some good results as to why you get sick after your walks. Thank you so much for your reply to my journal entry on Daily Strength! 😉

  7. Jay says:

    I don’t have my nitric oxide levels monitored. Although, during my spirometry tests, it’s imperative that I blow the “Three Little Pigs” houses down. You progressively blow a house down during the test until all 3 are no longer there. All while the pigs are oinking.

    I wonder how many little kids emotional states have been hindered due to destroying the 3 little pigs houses.

  8. Amy says:

    If the asthma world needs a symbol of the ability/need to exercise even with chronic lung issues, you’re it, I think.

    Even more impressive is your willingness to serve as a guinea pig to help drs. solve some of the asthma puzzles out there. I hope your drs. can uncover some research that helps you personally and the medical world in general.

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