What makes my asthma so different from others, is that are actually TWO distinct processes going on in my lungs. A “double whammy” if you will. Both of these components are related to, and caused by asthma, but they are uniquely separate medical entities. One of them I have control over, the other I don’t . Let’s break these components down;

The first and primary component of my asthma, is pretty much the same one that all asthmatics have to some degree, and that is, hypersensitive, mucus producing-inflamed airways. When you have an asthma flare up, it’s the swelling of the lining of the airways, and/or the excessive mucus production, and/or the tightening of the muscle bands that attach to the outside of the airway, and/or ALL all of the above, that causes you to wheeze and feel short of breath. No one really knows why this happens, but luckily, most of these symptoms are treatable, and even preventable, when following an asthma action plan and taking the proper asthma medications. So, as with most asthmatics, this is the part of my asthma that I some control over.

My Bronchioles( sorry, it’s the best illustration I could find)

In addition to having sensitive and/or inflamed airways , I also have a 2nd component ,which is more commonly seen in people with COPD and Emphysema, but is now showing up more and more in extremely severe asthmatics. This component involves scarring and/or the loss of what they call “alveolar attachments” (essentially, elastic fibers which help pull the alveoli open from the outside).
Years and years of unchecked asthma exacerbations and multiple intubations, has left the inside of my airways severely damaged and scarred (what they call remodeling). The tissue that lines the inside of my breathing passages is literally scarred over, causing permanent narrowing ( see illustration above). Scarring of the airways looks just the way you would imagine any scar tissue to look. It’s thick, fibrous and pale looking. ( Click here to view the inside of my actual airways). Because of this scarring, my lung capacity and lung function are severely diminished. The combination of a loss of elastic recoil and a loss of alveolar attachments, makes it hard for me to empty my lungs completely (air trapping), which results in chronic breathlessness, sometimes severe.

The damage caused by lung scarring, cannot be reversed. Hence, this is the part of my asthma that I cannot control. Short of lung transplant surgery, there’s not a lot that can be done. All I can do is try and prevent the deterioration from getting worse (Ironically, it’s thought by some asthma researchers, that this kind of scarring might actually have a protective effect on the weaker airways and alveoli by preventing them from collapsing in on themselves). This would probably account for why I’m still alive.

So anyway, because of this double whammy effect on my lungs, what might be considered a minor flare up for some asthmatics, can turn into a life threatening one for me. Basically, I have no reserve left. The inside of my air passages are so small from all the scarring and inflammation, that even the slightest bronchospasm or inflammation of those airways can cause them to completely close off.

The message here is simple, if you wanna maintain control over your asthma, take it seriously from day one. Do everything you can to keep your symptoms in check, so that you minimize your chances of developing “Double Whammy” asthma. If you find that you have “difficult- to- control” asthma, try to get evaluated by a board certified Pulmonologist who specializes in severe asthma, as soon as possible . I can’t tell you how many general practitioners Ive seen over the years who claimed they knew everything there was to know about treating my asthma ( but that’s another post).

Addendum : There is a small glimmer of hope out there, that at least some forms of severe asthma might actually be treatable someday. The key, is asthma research and finding out why scarring occurs in some asthmatics and not in others. This is why phenotyping of severe asthma and the work of people like Dr Sally Wenzel, is so crucial.
If you have asthma, please consider being a volunteer for SARP. Help the researchers find the answer, so that we can all breath better. If you’d like to read more about my type of asthma, check the “About my Asthma” section

Here’s the deal…. if you have an obstructive lung disease and are prone to air-trapping (which is usually the case if you have severe asthma and to a greater degree if you have COPD or Emphysema), you need to be aware that any physical activity that makes you breath faster and deeper for prolonged periods of time, can also cause you to trap more air, which in turn can make your dyspnea worse and can even trigger a serious, life-threatening exacerbation. That’s right, you heard it from the king of asthmatic marathon walkers… If you exert yourself too much for prolonged periods, you can actually make yourself sick(er)…at least in the short term. The severity of ones lung disease and the propensity for air-trapping (as indicated by TLC and FEV1 ), probably adds to the likelihood that these negative side effects will occur. It also appears that this increased “air trapping”, at least in part, contributes to the delayed onset of symptoms that sometimes follows strenuous activity.
(Btw..the symptoms of air -trapping should not be confused with exercise induced asthma, which is totally different).

Now that’s not say that you shouldn’t exercise. In that regard, my message is the same as it’s always been, and that is….If you have asthma or any obstructive lung disease, you need to get out there and exercise your butt off regularly! Just don’t over do it, and always be aware of your breathing pattern.

Oh..and I should also point out, that it doesn’t seem to be how much exercise you do, but rather, how intense the exercise is , that determines how severe the air-trapping will be. If you participate in a sport such as running or jogging ( and yes, that would include racewalking), you’re probably going to be much more prone to developing increased air trapping than you would with regular fitness walking or from milder forms of exercise.

So for me, does this mean I should stop training and/or stop doing marathons? Probably. Will I follow through on my own advise? Probably Not.
I’ll be the first to admit that I have a bad habit of over do it. But, out of the 19 races Ive completed in the past 5 years, only 2 of those landed me in the hospital. And don’t forget, non-asthmatics end up in hospitals too from “over-doing it” too.

Hey, I’m short of breath 24/7 anyway, so if pushing myself to the brink is what I need to do to really feel alive, then regardless of the consequences, that’s what I’ll do. I’m willing to take that risk because Id rather be sick and feel happy , then to be healthy and feel miserable. Sounds contradictory I know, but it’s really not. We all deal with our afflictions in different ways.

The decision to write a post about the use of opiates to treat my breathlessness was a tough one for me. As a responsible blogger I always worry about the possibility of sending the wrong message, especially when it comes to the use of certain treatments and/or medications. Let me be clear in stating, that I don’t advocate the use of opiates for asthmatics in general… the risk of respiratory depression is just too high. There are however, a small percentage of people who’s obstructive lung disease is so advanced, that nothing else works in quelling their breathlessness. Though opiates should only be used as a last resort in treating dyspnea, they do offer a degree of welcome symptom relief for people like me, so I think their use is important to talk about.

For the past year Ive been taking short acting opiates ( ie hydrocodone (Vicodin)and sometimes Dilaudid or Fentanyl) on an as-needed basis for bouts of prolonged moderate level breathlessness. When I say breathlessness, I’m not referring to the sudden shortness of breath that develops from acute bronchospasm or chest tightening you experience during an asthma flare, rather, I’m talking about the type of breathlessness that’s usually associated with air-trapping and chronically low lung function. There’s a huge difference, and thankfully most asthmatics will never experience this second category.

Starting next month ,they (my palliative care docs), wanna put me on a 30 day trial of continuous low dose methadone (Yes, the heroin withdrawal drug). They believe, that having a constant level of opiates in the bloodstream, is more effective in relieving dyspnea, and is better tolerated, than the shorter acting compounded drugs like vicodin (vicodin has tylenol in it).

My biggest concern about taking methadone or any of these morphine-like drugs, is how they will effect my ability to exercise. The experts claim that it might actually improve my exercise tolerance, because I wont “feel” as breathless. We’ll see about that.

Although physicians want to do all they can to help relieve dyspnea in their patients, fear of respiratory depression and criticism by colleagues has discouraged them from using opiates, even in treating those with end-stage disease. Thankfully, that attitude is slowly beginning to change. Opioids are very effective in relieving dyspnea, although the exact mechanism is not understood. Contrary to common belief, this effect does not result through inhibition of respiratory drive. Relief from the “work of breathing” is a function of steady-state opioid levels, much like steady-state opioid levels relieve pain. Inhibition of respiratory drive results primarily from rising opioid serum levels. Studies have demonstrated significant relief of dyspnea from opioids without significant effects on ventilation or pCO2 levels in common therapeutic doses.

For those of you who aren’t quite familiar the terminology, “dyspnea” is the subjective sensation of breathlessness or difficulty in breathing. It’s basically the experience of shortness of breath. Much like physical pain, we all perceive breathing discomfort differently. The way you perceive shortness of breath is probably different than the way I perceive it, and visa versa. Some of us have a higher tolerance for respiratory discomfort , and some lower. A million things can cause dyspnea, including chemical ,neurological and psychological abnormalities, but it’s usually a result of severe lung or heart problems. Dyspnea can me mild or severe. It can be acute ( abrupt ) or chronic ( long standing). Dyspnea is the main cause of suffering in lung disease patients, and is one of the top reasons why people seek emergency room care. Whatever the cause, dyspnea can be difficult to treat and can make your life miserable.

Why did they put ME on opiates in the first place? After all, I’m just a bad asthmatic , right?
Well, basically because we’ve tried everything else.
My lungs are so messed up , that even when my asthma is not flaring, I’m still short of breath. In fact, I’m pretty much short of breath to some degree … all the time. Because I’ve been this way for so long, for the most part it doesn’t bother me that much ….I’m used to it. But, there are other times when my dyspnea , for whatever reason, gets so out of control and so intense, that it becomes overwhelming and unbearable. Left unchecked, the resulting stress, anxiety and increased work of breathing that can emerge from these bouts, can actually fuel a full blown asthma exacerbation, leading to an unwanted date with an endotracheal tube.

I still actively practice all the more common treatment strategies, including daily exercise and stress reduction therapy to better manage my dyspnea. And while these more traditional therapies have probably helped me live longer and cope better with my disease, they haven’t alleviated much of the actual suffering. It’s for this reason, and under the guidance of a palliative care specialist, that I choose to take opiate medications and sometimes ativan to manage my dyspnea on a regular basis now.

(I just noticed what it says on the pillow)

First , the good news…..

I finally got to meet Dr. Sally Wenzel (up close and personal you might say, considering she analyzed my DNA and probed around inside my lungs). It’s difficult for me to find just the right adjectives to describe how I feel about her, so I’ll just say … I love this women! She’s like my pulmonary physician soul mate. I admire her, not only because she’s an awesome Pulmonologist and research scientist, but mainly because of her fiery personality and the passion she has in trying to understand asthmatics and what makes us tick. And get this….she’s a good listener too! She actually cares enough about what you have to say, that she takes the time to listen. Imagine that.

I think Sally (Dr Wenzel) probably knows more about asthma pathology and the personalities of asthmatics in general, than any non-asthmatic person Ive ever met. It’s absolutely uncanny the things she knows about our disease and how we behave and live. She understands things about asthmatics that they don’t teach you in medical school. Things that you would only know by interviewing thousands of us and immersing yourself in the severe asthma culture. I could spend literally days just talking with her about this subject. We seem to teach each other. I am so lucky that I was given the opportunity to hook up with her. I think we will be friends for a long time.

The accolades don’t stop with Dr Wenzel, there were dozens of other wonderful people involved in this study as well. Here are just a few that Id like to mention by name and position.

Erin———–SARP research coordinator extraordinaire.
Cathrine RN—-Dr Wenzel’s assistant and other right hand
Mat tech——Very cool PFT tech.
Celo tech—–Just one of many super cool people on the bronch team
Trish RN——-A special Nurse. She actually called in on her day off to see how I was doing.
Lindsey RN—–Probably the sweetest Nurse Ive had the pleasure of meeting
Chuck RN——They don’t get better than this “young man”.
Rose RN——-Kind, Kind, Kind!
Michelle RN—-A Super Nurse.

To the above people , Id just like to say Thank You!
In all the years that Ive been in and out of various hospitals and clinics, Ive never come a cross a better team of compassionate and caring medical professionals like those associated with the SARP study, especially the people who took care of me in the Translational Research Care Unit at UMPC after my bronchoscopy. Kudo’s to you guys!

As for the SARP study itself, well, it’s probably the best coordinated and well thought out research experience Ive ever been a part of. With so many ancillary departments involved, like Nuclear Medicine, Pulmonary Functions and Diagnostics , it’s amazing how smooth the whole system runs. Everything is coordinated and timed down to the minute. In the bronchoscopy room, they actually had a group of lab personnel standing by in their running shoes, so that they could literally run the tissue samples over to the lab the moment they they were removed from my body. This method ensures that the samples will be ultra fresh. (I think).

Btw, if you’re not familiar with this part of the Country, the University of Pittsburgh and it’s affiliated medical schools ,hospitals and clinics, is massive in size. More like a small city, I counted at least 4 city blocks of medical buildings 2 and 3 deep. Some the size of mini skyscrapers, all connected through a series of enclosed pedestrian bridges. Pretty neat since it snows here in the winter.

Here’s an abbreviated version of my actual testing itinerary:

Wednesday Afternoon: Completed a ton of questionnaires,did a verbal interview, and did pre&post bronchodilator spirometry, sputum induction attempt.
Thursday: Allergy skin testing (scratch test, not sub q), Full PFT ( lung volumes) pre&post bronchodilator.
Friday: Bronchoscopy prep, ( ie pre-medications and neb treatments), then nasal brushing, then the actual bronchoscopy with brushings and biopsy, but no lavage because of the potential side effects, more pfts
Friday Evening-Saturday,:Monitored in the hospital overnight.

As with any long distance trip , I didn’t eat or sleep very well and I’m totally worn out, but the effort of getting here to Pittsburgh to do this study was totally worth it. Definitively a positive experience and I would gladly return again if asked.

(Matthew, myself and Erin in the PFT lab)

(Chuck and Trish, two of the best nurses in the world)

Look at all the blood they took from me

(And check out this reaction I had to Grass allergen compared to tree allergen,which is the little dot to the left.)

Now for the not so good news….

Because this was the first time Ive ever had a bronchoscopy, it’s really the first time anyone has ever gotten a close-up look at the inside of my lungs. And what Dr Wenzel saw down there, wasn’t good. What she saw was lung anatomy that had undergone extensive remodeling. My airways appeared very scarred, stiff and fibrotic in nature…. seems my disease is much more advanced than previously thought. She actually found it quite amazing that I was still able to function as well as I do, let alone still alive. What was baffling to me, is that she couldn’t find any physical evidence of air-trapping or any of the other tell tale signs of COPD or emphysema that I often thought I had. It will be a few more weeks before they’ll have a final report, as they sent bits and pieces of my lung tissue and blood samples to various university labs for analysis, but suffice it to say, my long term survival isn’t looking too rosy right now.

They recommended that I seriously consider lung transplant surgery somewhere down the road. We all agreed that I’m not even close to that point right now, but that when the time comes, I shouldn’t procrastinate, as the waiting time for new lungs can take up to 3 years (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still relatively good(probably from all the aerobic exercise I do), and I’m still able to exercise, though that probably won’t be the case for very much longer.

Who knows, maybe someday I’ll be able to RUN the Boston marathon … instead of walking it!

Update as of 12-15-2009: Results from the computerized quantitative lung scans, did indeed show significant air trapping.

Before reading this post, you might find it useful to read the first two of paragraphs in the “My Asthma” section of my blog. This will give you a little background as to why my dyspnea (shortness of breath) is so difficult to manage. Along those same lines, Rick over at the Respiratory Therapy Cave, does a great job of explaining how asthma can sometimes turn into COPD.

On Thursday I had my first appointment at this new service called “Symptom Management” . The clinic is basically an extension of the Palliative Care dept over at the UCSF Mt Zion campus. Rather than end-of-life care, this particular specialty focuses on treating the symptoms that cause suffering, i.e. breathing problems, pain, fatigue, stress, etc, regardless of the prognosis. I was referred there for my chronic and worsening dyspnea. Don’t get me wrong, I’m not giving up on traditional asthma care, but at the same time I don’t want to fool myself. I know that this disease will eventually kill me . In the meantime, I wanna stay not only as physically active as possible, but ALSO as comfortable as possible. Which for me means breathing easier.

Most of my dyspnea (the sensation of breathlessness), stems from a condition called air-trapping. Pretty much the hallmark of obstructive lung diseases ( COPD, emyphysema and sometimes severe asthma), air- trapping occurs when airway obstruction due to chronic inflammation and/or loss of elasticity, causes air to become trapped in the lungs during exhalation. In other words…. I can’t exhale completely!
For an example of what air-trapping feels like. Take a full normal breath in, then try to exhale it out through a tiny straw (something like a coffee stirrer). See how long you can keep that up. You now have a sense of just how hard the work of breathing becomes for someone who has air-trapping . This is what my breathing feels like on a daily basis.

Things get even worse when my airways start getting twitchy, because then, in addition to the air-trapping symptoms, I also have to deal with my smaller airways closing up (bronchospasm). Having both of these 2 distinct symptoms at the same time becomes very troublesome, because it’s often difficult to tell which is causing which. Dyspnea associated with air trapping can most definitely make you feel uncomfortable, but the dyspnea that is caused by sudden or severe bronchospasm, can be potentially fatal.
In any case, the bottom line , is that dyspnea causes a lot of suffering and can make your life absolutely miserable.

For the past few years Ive been involved in several pulmonary rehab classes and research studies where they show you different techniques to help control your dyspnea. Some of what they teach helps, but most of these classes are geared towards people with COPD and Emphysema where having reactive airways ( ie bronchospasm) is usually not an issue. There are very few resources out there specifically designed to help chronic severe asthmatics deal with the complexities of the disease and type of breathlessness they experience. The only thing that’s really helped me so far, is a combination of relaxation techniques, anti-anxiety meds ( ativan) and mild opiates.

So anyways back to Thursday’s appt,

The symptom management doctor (who was really cool by the way) and I, both agreed that while my disease is pretty severe, that my quality of life is still quite good and that I should continue on with my current asthma action plan…even if it calls for future intubations! As far as my dyspnea goes, he recommended that I increase my vicodin dose to at least 4 times a day for better nighttime coverage. If that doesn’t work, he wants to try me on methadone ( yup, the drug heroin addicts use when detoxing ). I told him I would think about it, but I also made it clear that I didn’t want to take any medications that would effect my ability to exercise.
We also discussed “advance directives” and what would I want done ( or not done) , if I became critically ill and not able to communicate. For me this is mostly as issue of how long I would want to be on a ventilator, if there was no hope of recovering.

Im glad I went to this appointment. I think I came away a little less apprehensive about the whole issue of palliative care and what it implies. Anything that helps reduce the suffering that goes along with chronic disease ,is certainly worth considering as a treatment option.

In part two, I’ll talk about the impact that dyspnea and air-trapping have on my ability to exercise. For me, that’s the real dilemma.

Ever notice the time stamp on many of my blog entries? I usually compose and publish them in the early morning hours…sometimes way before dawn. You know why? Because I’m usually awake at 3 or 4 in the morning. And why am I up that early? Because Ive usually had a bad night of breathing and have to get out of bed just so I can breath.

I lead a double life. A mild to moderate asthmatic by day and a severe one by night . Starting around 6pm everyday, almost like clockwork, it’s as if someone came along and turned my bad breathing switch to the “on” position. Out of the blue, my peak flows will drop by as much as 1/3 , and as the evening progresses, so will my breathing discomfort. By the time 9 pm rolls around, I’m usually so uncomfortable, that I’ll have to down a little Ativan just to take the edge off. The drug doesn’t do anything for your breathing per se, it works by mellowing you out to the point where you basically don’t give a s**t that you’re short of breath. If the ativan doesn’t cut it , sometimes I’ll call on the big boys for help….the opiates. I hate taking narcotics for my breathing, because while they sometimes help, they also have a lot of side effects and can be very addictive.

I don’t wanna wave any red flags or sound overly dramatic, but there are times, especially during the evening hours, that my breathing gets so uncomfortable, I just want it all to end. I try to remain as calm as possible and do all the things that you’re supposed to do when your dyspnea gets outta control, but most of these stress relieving techniques, rarely work for me when my lungs get extra tight. Instead, I’ll usually go outside and sit on the front porch where there’s sometimes a breeze, and just tough it out the best I can. It’s during times like this , when all I can think of….. is not wanting to suffer with this disease anymore. It changes my personality and puts me in foul angry mood.

So why the huge daytime- to- nighttime swings? At first I thought it might have something to do with the time of day that I take my asthma meds. But thats unlikely, because I divide all of my meds into equal doses throughout the day to ensure more uniform coverage. My doctors thought that maybe I was having some sort of obstructive sleep apnea thing , but my sleep studies all came back totally negative. Then there’s the exercise issue, could too much exercise during the day make me feel like crap at night? Possibly, but again, the findings aren’t consistent. On the weekends when I generally don’t exercise, I still have the same nighttime breathing problems that I do on the days where I do exercise…sometimes even worse.

A lot of people will read this and assume that my asthma is simply not well controlled , and will recommend that I increase my bronchodilator use and/or steroid intake. The problem is, I’m already on maximal dosages of everything! , except for steroids in pill form, which for me, is not an option. My primary care doc recently recommended that I start taking a mild opiate, like vicodin, just before bedtime to see if that would quell my dyspnea enough to catch some sleep. Unfortunately, vicodin wires me.

Whether it’s full on bronchospasm or just air-trapping that brings on this distress, these bouts happen with such regularity now, that I don’t look forward to nice relaxing evenings anymore. In fact, I dread them. And except for an occasional night time stroll to take my mind off it, you’ll never see me out in public after dark.

I found this interesting article in the Chest Journal about this very same phenomena, titled “The Diurnal Rhythm of Asthma“.

OK, We can’t always have cheerful posts. I try my best to poke fun and put a positive spin on all things asthma, but lets face it, this disease sucks and can really dampen your spirits. Next week I have an appt with the Palliative care dept at UCSF, to see if they have any NEW advice to offer me, in dealing with my chronic dyspnea.

In the interest of being a responsible blogger, I must point out, that the use of opiates to treat dyspnea is usually reserved for people with terminal or end stage disease. It’s primary use is to end suffering.  Many pulmonologists would strongly discourage their asthmatic patients from taking such drugs, as they can also dangerously slow your breathing.

Dr Sorkness does a great job of explaining the basics of asthma as well as the research the SARP is doing, in trying to find out what makes the severe form of the disease different from the milder forms. This is the same SARP study that I will be participating in later this year. Listen here

Most days start out pretty good with my best breathing occurring during the morning hours , but that effect rarely extends into the afternoon. Generally ,as the day progresses, so does my breathlessness. If I eat even a small meal for lunch or dinner, the bloating that results, only adds to my breathing discomfort. By early evening I’m usually so short of breath , that I will have to take neb treatments every hour or two until bedtime. On most evenings I have to take Ativan or a strong opiate to quell my dyspnea enough to where I can nod off. When it’s time to go to bed I pre- medicate with a neb treatment , 2 Motrins and a half a vicodin.

If I’m able to sleep at all, it’s usually for no more than 2 hours at a time and then I wake up gasping for air. Sometimes I’m so physically exhausted that I will lay there in a semi- awake state feeling myself suffocating…it’s an awful feeling. After about 5 minutes of that, I have to sit up to catch my breath and then get up and take a breathing treatment. By the time I finish with the breathing treatment, I’m unable to fall back asleep and will lay in bed wide awake until the sun rises. By 4 am my shoulder muscles are hurting so bad from shrugging them all night long, that I’m forced to get out of bed just to relieve the pain. Finally by 6am when the 9 pills and the 3 different inhalers I took finally kick in, I’ll usually start to feel pretty good again. After that, if all goes well, I have about a 8 hour window of decent breathing, in which to get my daily chores done, walk , and get my daily exercise and/or training in.

Keep in mind that the above scenario only plays out when I’m having a relatively GOOD breathing day. On the not-so -good breathing days, you can skip the exercise part all together…or anything physical for that matter. If my asthma gets out of hand, then I have to deal with the uncertainty of just how bad it will get and the added stress of possibly being admitted to the hospital…or worse. Then there’s burden that these things place on the people who care about me.

So yeah, Ive done some pretty amazing things and I hope to continue doing more, but at the end of the day I’m just a regular dude with really bad asthma and a tremendous will, dealing with this disease the best I can.

I started flaring- up about 2 weeks ago and haven’t really recovered since…at least not to my baseline. That, plus the inability to train the way I should be for this marathon , has put somewhat of a damper on my enthusiasm for this long awaited trip. Hopefully, I’ll turn the corner in the next few days and everything will seem exciting again. I would hate to have to cancel the reservations with my Italian hosts on such short notice.

In the meantime, I’m just gonna start packing and get things in order for the trip as if everything was normal. Man, you wouldn’t believe the planning that goes into a trip like this when you have serious health issues… especially when you travel alone. With just one suit case and one carry on to work with , I have to transport two separate stashes of medications, plus two separate nebulizer machines ( in case get my luggage gets lost, like it did last time). I also have to have multiple contingency plans in place, in case I get sick over there and need hospital care. I basically have to have a back up plan for everything I do when I travel. Not only costly, but a huge pain in the ass.

We’ll see how this all plays out by next weekend.

Oh..Almost forgot….as you can see , the old blog is getting a make-over. Should be finished in a couple days.

Thursday I did the second to the last of my really long training walks for the Boston and Rome marathons (18.1 miles to be exact), and now, a day later, I’m having a tough time keeping my peak flows out of the red zone. For the first time in a long time, my FEV1

actually dipped below 30%. Ive managed to hold my own by increasing my neb treatments to every 1-2 hours , but Ive been huffing and puffing just walking around my house. Funny how I can walk 18 miles one day, and then have a hard time walking 18 feet the next.

Maybe I over did it, though I’ll be damed if I know how. I felt fine during most of the walk , and to play it cautious , I even walked slower than usual and took half a dozen 3 minute rest breaks along the way. Total time to finish the walk was 4:58 . Other than the noticeable humidity in the air and the smell of fresh cut grass near Crissy field (which can sometimes set me off), overall Id say my breathing was better than average. If anything, it was my arms, legs and feet that were really starting to bother me near the end of the walk.

There are probably numerous environmental and intrinsic factors at play here that are causing me to flare-up after these long walks, but I think the reality is, my disease is simply catching up with me. My lung function and my tolerance for strenuous exercise is declining , and short of a bilateral lung transplant, there’s nothing that will change that. All the more the reason I suppose,to do these upcoming races while I’m still able.

I was asking my friend Mike how he trains for a marathon. His response was, that it takes too much out of him to do traditional mileage building and training walks, so instead, he does core strengthening ( pilates) and a few stair climbs races. Hmmm, maybe he’s on to something. Maybe that’s why he doesn’t have as many breathing flare-ups as I do. Geese, I’d love not to have to do training walks for months on end and risk dying every time I train for a marathon, but there’s no way on earth I would have the endurance or the breath to finish one if I didn’t train the way I currently do. Still, I wonder if the means justifies the end..( or something like that) Oddly, I seem to get sick after almost every training walk , but I’ve only gotten sick one time after finishing an actual marathon.

Btw, here’s a Google Map I plotted out of my 18 mile walk. I like this route because it gives you a little bit of everything. City streets, views of the bay, park paths, vistas from the Golden Gate bridge and just the right amount of hills and straight aways.
To take a virtual tour of my course, click on “view larger map”, zoom in anywhere along the purple course line and use the street view feature to see what I see when I walk this course.
Happy Training!

It was an absolutely gorgeous Saturday morning and a perfect day for walking in San Francisco, but once again, a couple hours after finishing the walk ( 13 miles this time), my lungs decided to protest by clamping down really tight and putting me through another evening of hell . Within just 2 hours of completing the 3.5 hour walk, my peaks flows dropped from 350 to 130. It took a full 24 hours of back to back neb treatments and an epi-pen shot just to get me back into my yellow zone. As I write this post my PF is back up to 290 ( which is still 80 below my baseline), and I’m still very SOB.

I hesitate in calling this event “exercise induced” , because generally , exercise induced asthma flare-ups occur during the exercise , not after it. I did feel a little tighter than usual at the beginning of the walk and probably used my inhalers more than the normal for me , but I didn’t feel so short of breath that I had to stop at any point. I was actually having more problems with the muscle pain in my shoulders and neck than with my breathing. In a way , I think Ive become so conditioned to being short of breath when I exert myself for long periods, that I don’t sense the decline in my lung function until it reaches a dangerous level.
This sensory disconnect, if you will, is starting to get really problematic for me. If only there was a way I could more accurately judge how tight I’m getting in advance, perhaps I could prevent some of these flare-ups from progressing . I’ve even considered taking a peak flow meter along on my walks, but I’m not sure how useful the results would be, since my breathing pattern would be affected by the exercise even if I was breathing OK .

It’s no secret to the people who read my blog that I have a tendency to “over do it” when it come walking, and that sometimes this over zealousness can lead to bouts of hyperinflation and air trapping after the event. But, these most recent post walk flare-ups seem to come out of the blue with symptoms that intensify very rapidly. First I’ll feel a little SOB, then I’ll start wheezing diffusely, and then my PFs will totally bottom out …all within a matter of minutes! Basically a full pledged , bronchospastic, classic text book asthma attack. I don’t like this one bit.

So I guess the big question is, am I gonna have go through this every time I do a long walk from now on ? or were these last two episodes just flukes?
So far, Ive been lucky and have turned around without having to hightail it to the ER , but next time who knows. And if I’m getting this sick after only 13 miles, whats gonna happen after 26 miles? It’s a kind of a scary thought when you consider that my next 26 miler is supposed to take place 6,000 miles from home.

My next scheduled walk is supposed to be 10 miler next weekend, followed a 15 miler the week after. Assuming I’m breathing well enough to walk by then, I think the 15 miler will be the deal breaker as to whether or not I will (or should) walk Rome this year.

Here’s some phone pics from the happier part of the day. (Hard to believe that there was an attack brewing).

This chart represents my dyspnea levels ( shortness of breath levels ), recorded daily for the past 330 days , and is part of a year long research study I’m involved in that deals with dyspnea, it’s effect on ones ability to exercise, and the most effective ways of providing education and support to those with chronic shortness of breath.

You’ll notice in the center of the chart , there was an extended period from early November through the end of January, where I enjoyed lot of mild to only moderately difficult breathing days ( 1s & 2s on the chart) . Then , as we get into February , I’m not so lucky. My breathing gets progressively worse,and from late March to Late April, my dypnea levels shoot up in into the severe zone ( 3s & 4s), where it stays for quite a while (the #4s coincide with my hospitalizations). Finally , in early June my dyspnea levels start trending back down to to my baseline where they have pretty much remained since.

Along with my daily dyspnea levels, I also have to record all of my physical activity as well as my exercise goals . At the end of the study on Aug 28th, the researchers will analyze all the data and come to some sort of conclusion. I’ll post the findings after they’re published.

Last Saturday just 4 days after being released from the prison, I went out and repeated the very same 8 mile walk that I thought might have put me behind bars in the first place. Let me first say, I wouldn’t have even attempted a repeat walk so soon after a hospitalization , but I was breathing easy the evening before, and with the steroids were making me so antsy , I decided to go for it. Though I had to walk slower than I would’ve liked (18 min/mile) , my lungs behaved nicely and the walk went relatively well. I felt so good in fact, that I actually ended up walking 9 miles instead of 8. I tried my best not to racewalk, but foolishness got the best of me and I probably did about a dozen or so short sprints. During the 3 hour walk I experienced chest tightness about every other mile , and think I used my inhaler about 8 times( pretty much normal for me for that distance.) The biggest problem I had was muscle fatigue and the tell tale signs of impending calf cramps, not surprising considering that I was on 40 mg of prednisone at the time and had been bed bound just a week earlier. Anyways, I finished the walk feeling strong. I came home, took an ice bath and had only minor breathing problems the rest of the day.

Sunday morning arrives, and my dyspnea level is noticeably worse than 24 hours earlier and it continues to escalate as the day wears on. ( I know somethings not right when I get  SOB just walking around the house.) My peak flows are still pretty good , but my FEV1s start to drift down. By Sunday evening I’m miserable and to make things worse  I couldn’t blame anyone but myself for the way I felt.  After all, I brought it on myself right?

Monday morning rolls around and I’m breathing great again, so I think to myself…  OK, one day of  bad breathing doesn’t sound like a bad trade-off for one good day of walking,  so why not go for it again . That afternoon I did my 5 mile bridge walk.   Monday night I’m still breathing good, and in fact,  felt better after the walk than before. Tuesday morning, a repeat of Sunday…..I can’t believe it.  I do a walk , and 24 hours later…I can’t breath again!  This is just plain weird.  This time however, the SOB spills over into Wednesday, and by that evening my dypnea level goes through the roof.    Wednesday night was so bad, I actually thought I was going to suffocate and that would be it.   Not only did I feel hyper- inflated , but I could feel my airways tightening up ( bronchospasm) . I was so SOB that I even had a hard time using my nebulizer. I couldn’t take a deep enough breath to get the meds in.  Now,  I’m not an anxious person in general, but I can tell you , that the anxiety of not being able to breath was making things worse. Just the extra brainpower that you consume when you’re anxious, can make you more SOB.   Afraid of falling over the edge and having to  911ing it,  I pulled out every trick in the book to relax my lungs and my brain !   By doing  diaphragmatic breathing exercises, purse-lip breathing, anti anxiety meds, opiates and neb treatments every hour,  I made it though the night ( sitting up).   That was probably a dare devilish move on my part, but at least I’m home right now and not in the hospital.

Thursday morning , exhausted , and still dyspneic from the night before,  I did the unthinkable, ( actually two unthinkables).   First , I bumped up my steroids back to 40 mg , then I  went out for a 5 mile walk!    I figured what the heck,  I’m so SOB anyway, how much worse could it get.  I complete the walk in 2 hours  in 86 degree “Spare The Air Day” weather,  and surprisingly , I was breathing BETTER after that walk…. than    before I left!

Its now Friday morning and I’m still breathing fairly well.  My PF’s are back in the green zone and my FEV1 is 39%.   So whats up?   I do a walk when I’m breathing well and I get sick 24 later.  But then I walk when I’m sick and 24 hours later I’m breathing well again. I must be wired backwards or something.  Maybe bumping up of the steroids had something to do with , but it usually takes at least a day for the extra steroids to take effect.

After a week of good and bad days, the  question remains ..is my walking causing my flare-ups?  Maybe it’s something in the environment?  Maybe  its just me?   Is there some kind of physical stress that I don’t perceive when Im walking that causes a gradual worsening of my symptoms.   Was it foolish to walk when I was already way too SOB to begin with?   That last question is debatable because many so-called experts will tell you to exercise even when you’re SOB. ( in all fairness , that last statement refers primarily to COPDers and not so much to COPD/ asthmatics) .

The experiment was inconclusive.   Because of the delayed response from the time I exercised , till the time I develop symptoms,  I still cannot say with 100% certainty,  that  walking in and of itself, is making me sick.  The search for the elusive trigger continues…  but until its found, I will continue to walk my ass off.

As I type this post up, I’m slowly recovering from what was my 91st Hospitalization. By asthma exacerbation standards, it was only a moderate attack, but it was by far one of the most stressful hospitalizations I’ve ever had. And to think I may have brought the attack on myself….I can only describe my feelings as … unsure of anything now.

Ok, so for whatever reason, I ended up in the hospital and ( ICU again) , but I’m still not totally convinced that my walking was the only culprit. In defense of the medical establishments stance on this subject , I have to agree that there is mounting evidence to support their theory that because my asthma is so severe and because I air trap , that I may be unknowingly exacerbating my own flare ups by “over-doing it”. Not just with my walking, but with ANY activity that causes physical or emotional stress . They also point out that regardless of how well I keep my internal living and breathing spaces clean and free of allergens, there are potential environmental triggers outside my home that could be making the milder exacerbations more severe. As logical as this all might sound, it’s still at best, speculation, an educated guess, one of the only explanations left , if you will. It could also be just as true, that no matter what I do, or how well I safeguard myself from all triggers, I’m going to get sick. It’s a classic catch 22. If I exercise ( or live) too much, I put myself at risk for death, if I don’t exercise , I will die an unhappy blob. Given a choice, which path do you think Id choose?

Coming in for treatment early probably thwarted off an intubation, but I’m beginning to wonder if all these preemptive hospital interventions are worth the huge emotional and physical drains they inflict on me. Never have I felt so much like a medical oddity or burden on the system. Never have I been poked , prodded or questioned by so many lung specialists in such short order. For the first time ever I got an uneasy feeling that they just wanted me be to do what a nice stoic severe asthmatic is supposed to do…not argue with them , take my steroids, and quietly fade away, (preferably at home). Never have I felt so beaten up depressed , or defeated after such a short hospital stay. As crazy as this might sound, when I used to wait until I was critically ill to come in, at least I felt justified that I was sick enough to be there in the first place and therefore the resulting torture was somehow acceptable.

Contrary to popular belief, I am not Superman and I am NOT a gluten for punishment . If I am making myself sick by pushing myself too hard during exercise, then I need to modify my training. Having said that, I am not afraid of dying doing something that I love.
Right now I’m working on an exercise plan to reduce both the mileage and intensity of my training walks, while at the same time maintaining a minimal level of endurance needed to complete the goals Ive set up for myself. Ive decided to eliminate the majority of my daily bridge walks, as this is where I’m most tempted to racewalk, (which is probably the main culprit in my walk related exacerbations.)

In the meantime, I’ve been referred to yet another team of ” asthma specialists” who work with the worst of the worst. From reading their bios, it looks like they deal primarily with behavior modification. I think they’re hoping that they can somehow brainwash me into thinking that I’m not short of breath, thereby eliminating the dyspnea-anxiety cycle. I’ve agreed to try anything except psych meds or anything that makes you “feel” that it’s OK to suffocate.

For those of you who think Ive wimped out because of this recent set back, this Saturday, just 4 days after getting out of the hospital, I will redo the 8 miler that supposedly made me sick to begin with. This time however, I will not push myself as hard. If I can pull this off without getting sick, then the plan is to continue with bi-weekly LSDs to prepare me for the upcoming summer races.

Today’s test walk was very disappointing. I was so short of breath, I couldn’t racewalk..at all! The best I could do was some regular walking with an occasional sprint thrown in so I that wouldn’t get bored.

My Peak flows are all over the place as well. Today before my walk they were 375, after my walk…240 (almost my red zone). Even when I’m not exerting myself, they’re dipping 100-200 points without rhyme or reason. In addition, my shortness of breath has been near constant, which makes me very irritable and quite bitchy. I havent been able to break through to my green zone in weeks now.

My lung doctors have been expressing their frustration as well. Not so much about the speed of my current recovery , but because I’ve ended up in the hospital 5 times this year and I seem to be getting critically ill now , at the drop of a hat.
They’re now classifying me as a type-1 brittle asthmatic (changed from a type-2) . We’re currently working on a new asthma action plan which includes close monitoring of even the most minor of flare-ups , so they don’t escalate into life- threatening ones. They also want me to stay on steroids ….permanently!
I’ve agreed to stay on a daily maintenance dose of 20mg, but anymore than that is totally out of the question. I might have agreed to more if I was 23 years old, but I’m not…. I’m 53 years old now. I’ve lived a long life with this disease and I’m just too tired to ride the steroid roller coaster anymore. Besides…. a higher maintenance dose would kill me way before the disease does. I ‘ll take my chances without them.

On occasion I receive emails from other asthmatics, commenting on how it is that I’m able maintain such a happy outlook on life with such severe disease. Some have even accused me of being in denial or hiding something. I hope this post dispels those notions. I have bad days just like everyone else, I just don’t let them get the best of me.

Below, is the post I was working on just a few hours before I ended up in the hospital last week. I had no idea at the time, that my symptoms would escalate to the point where I’d need emergent care. Kinda weird reading it now:

Post title ” A matter of timing”

No matter what I do, no matter how well I take care of myself, the reoccurring theme seems to be…Breath good for a few weeks–Breath bad for a few weeks ! Cycle on, cycle off.
It’s like a I have a built in “breathing disruption” chip that’s programmed to trigger on and off every few weeks.

Well, after almost a full month of easy breathing, I’m getting increasingly more short of breath , and it appears that my “good breathing”cycle is finally over. I’ve actually gone way past that point now , and I’m beginning to titter on that proverbial slippery slope.

The question now is, do I let myself fall into the hands of the authorities, or do I hang on a little longer and hope for the best? If I turn myself in now, maybe I’ll get a lighter sentence. If I lay low , maybe I’ll make things worse for myself. I don’t know what to do.

Sounds crazy huh? , but I relive this same scenario about every 3 weeks like clockwork. I ‘m constantly cycling back and forth between good breathing periods and bad breathing periods….The only variable is how bad my breathing will get during the “bad breathing” periods.
If my theory holds true and my calculations are correct, then I should be back in a ” good breathing” pattern in about three weeks. The only problem , is that I’m supposed to be walking a marathon in 3 weeks…..That’s cutting it awfully close!

The ultimate cruelty of this disease, is that my “bad breathing” cycle might prevent me from attaining my goal of walking the Portland marathon, which my “good breathing” cycle allowed me to prepare for in the first place .

Less then 10 days till the marathon, and I still don’t know if I’ll be able to do it. I hope my 3 week theory is correct.

How long does it take YOU to exhale a single breath? A few seconds maybe?
Well, on one of my typical breathing days, it can take me up to a half a minute !

Seriously… it takes me 15 to 30 FULL seconds to expel enough air, to allow for the proper core muscle contraction to take place. Even if I force the air out with a cough, it’s still takes upwards of 10 seconds to get most of the air out, and by the time I do get it all out and tighten the appropriate muscles , I’m too short of breath to maintain the proper breathing pattern for the recommended contraction interval.

Is there an alternate , but equally effective way of doing these types of abdominal strengthening exercises? I have no problem doing several reps of slow sit ups as long as each sit up only requires a single muscle contraction with a single exhaled breath.

A friend of mine recommended that I do less sit-ups and concentrate more on plank exercises, as they strengthen larger muscle groups . Apparently, a single plank exercise , if done correctly, will benefit you more than multiple sit ups. I’m not sure if that’s true, but I’ll give it a try.

Anyone else have any suggestions?

That’s right …It seems every race that I’ve ever done fast ,or PR’d, I’ve paid a hefty price afterwards. On two occasions I was actually hospitalized as a direct result of “over exerting” myself . Of those races witch I did very slowly ( for whatever reason , Portland for example), I had no significant breathing problems afterwards.
Hmmm …there seems to be a pattern emerging here.

I don’t know if my disease is getting worse or if I’m flaring up because I’m pushing myself too hard. If in fact, I’m making myself sick by walking too fast , then it must have something to do with intensity, not distance.

A possible explanation, is that the faster I breath (due to increasing exertion), the more hyper inflated my lungs become. Because I can’t exhale completely like a normal person, air becomes trapped in the tiny airways and gets progressively worse over time if the level of exertion remains high. Eventually my lungs get so over inflated, that I have a really difficult time breathing .To make things worse, my lungs only deflate when they’re damn good and ready. It’s often a very slow process and there’s not much one can do about it. They can stay in a state of “over inflation” for days after a race, sometimes even weeks. This in itself can lead to respiratory fatigue pulmonary hypertension, and even trigger a full blown attack.

The other possibility of course, is that my disease is progressing to the point where I’m going to be short of breath at any exertion level. I hope that isn’t the case.

Anyways, if my first hunch is correct, then all I would have to do is slow down…. ..right? There’s only one problem ….. I’m a racewalker! Walking slow kinda defeats the whole purpose doesn’t it?

I would hate to go back to “regular slow walking”. Hell, the boredom would kill me before my lungs do.

This morning I was feeling pretty good and thought I would test the waters by doing a short walk. I walked about 2 miles , when all of a sudden I went into severe bronchospasm ( my lungs clamped up really tight). When I finally made it home my peak flow was only 150! The inhalers and nebs didn’t help, so I had to use the Epi-pen. I don’t like using epinephrine because it makes your heart pound really hard and fast, but sometimes it’s the only thing that can open up my airways. Luckily it did the trick and I avoided a possible to trip to jail.

Lesson learned: It’s way too soon to start walking again!

Besides the physical limitations, I’m an emotional Zombie from lack of sleep,and my mood swings are driving everyone crazy. I’m up at 3am futzing around the house and analyzing my stock portfolio—just your typical steroid behavior I guess.

I’m currently on 40 mgs of prednisone, and my doctors want me to wean down at a rate of 10 mg per week. At that slow pace, I won’t be totally off the drug until AFTER my next scheduled race , which is on July 29th. This is not a good thing, because as we all know, even low doses of prednisone can cause horrible leg cramps (I learned that lesson in Portland).

Assuming that my breathing continues to gradually improve, and I manage to somehow wean off the evil candy a little faster, at best, I’ll have 2 weeks to prepare for this race–not exactly the best training plan!
Then again, I’m not your typical lunger, so I think it’s doable, but I don’t expect to PR . That’s OK , this half marathon was only supposed to be a prep walk for Portland , which is what I really have my eyes on.

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If you’ve ever read through my posts, no doubt you’ve seen the little blinking lights at the top of each post, but did you ever wonder what they really mean? Do you really care?

Because this blog is as much about living with lung disease as it is about endurance walking, I wanted a simple way to tie the two together and give you, the reader, a sense of how I’m breathing, without throwing it in your face.

The “traffic light” system I devised is loosely based on the peak-flow meter “zone” system that most asthmatics and the medical establishment uses. I take it a step further by including subject input as well , i.e. do I feel short of breath?

The Green light or (green zone ) represents how I feel when I’m symptom- free at rest. It doesn’t necessarily mean that I’m breathing normal ( I never breath normal), rather, it means I’m breathing at my baseline, which in my case , represents a peak flow of greater than 550 and symptoms only on exertion. In general , it means I’m breathing OK and that I’m happy.

The Red light indicates the obvious. It means that I’m extremely short of breath and that a more serious exacerbation is either occurring, or is imminent .
You won’t see many of these lights, because I’m either too sick to blog about it, or I’m already in the hospital.

The color I dread the most is Yellow. The clinical term ( if there was one) would probably be ” mild exacerbation” or “flare up”.
This is where I spend at least half my life. It’s kind of an asthma Purgatory. It seems to come out of the blue and can last for a few days, or a few weeks! There’s no dramatic scenes of someone gasping and wheezing, this is a place where you suffocate in silence.
When you’re in this zone, breathing becomes very uncomfortable. It feels like someone is sitting on my chest. You may or may not be wheezing, but you have a hard time exhaling because of air trapping. You feel like you’re dying, but your not….. you feel miserable!
You’re too short of breath to do much of anything, but because your peak flows are not in the Red zone , you’re not sick enough to seek emergency medical attention care. The best you can do is notify your caregiver , ( if you can get a hold of them) or follow an asthma action plan that you devised with your doctor. In my case, I increase all my medications , start on the prednisone (if I’m not already on it), closely monitor my peak flows and oxygen saturations, and try to stay calm as possible. You try to convince yourself that this is only temporary, and that you ‘ll be back in the green real soon ( at least that’s what I do).

Currently I’ve been cycling between the green and yellow zones about every 3 weeks, spending equal amounts of time in each zone. Because I’m extremely strong willed and have a very high tolerance for breathing discomfort, I’m able to function better than most, and sometimes, can even walk quite far when I’m in the yellow zone. However, as the ratio of green to yellow days continues to decline, I’m finding it harder and harder to cope with everyday life let alone racewalking.

I hope this phase passes quickly, I have a marathon to walk in less than 4 weeks!