I often find it frustrating that here I am, a life long asthmatic, a Respiratory therapist and an asthma educator, yet still unable in normal conversation, to describe what makes my type of asthma so different from others. When asked to define asthma in general, I usually give the spiel about how asthma is an inflammatory disease of the airways, and blah.. blah.. blah .
But lately it’s hit me that the explanation Ive been giving for so long, though medically correct and easier for lay people to understand, doesn’t really paint an accurate picture of what’s actually happening with MY own asthma. So, I’d like to take this opportunity to explain more in depth why my type of asthma is so different. I hope I can do this without boring you, or worse, loosing you.

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

It’s been almost a year since Ive updated my asthma status. Here’s the latest report card. For the year, I give myself a C +

In general my lung function has only declined a couple percent which is good. The problem of course, is that when you’re down in the lower ranges like I am, even the slightest change can have a huge impact on the way you feel. My baseline FEV1 now ranges from 33-42%, compared to 36-47% a year ago.

Probably the most noticeable change, and my biggest complaint by far, is that I get short of breath much faster now when engaging in even physical activity. Magnify that 3 or 4 fold when I do activities like racewalking or marathon walking.

My dependence on opiates and anxiolytics to quell my breathlessness keeps growing. Where I used to only take these drugs occasionally, I now take them on a daily basis.
The good news is that they do help and have probably kept me out of the hospital on more than on occasion.

My medical establishment labels are unchanged ( no big surprise there). Under the GINA guidelines, I’m still labeled a severe persistent asthmatic. Under the brand new SARP phenotypes for severe asthmatics, I’m labeled a Catagory/Cluster 5, Childhood onset asthmatic. ( Thank you Dr Wenzel)

Symptoms
• I’m pretty much short of breath to some degree all the time now (even when I’m in my green zone). Most of the time it doesn’t bother me because I’m used to it. But in addition to the low level chronic breathlessness, I’ve also been getting these short, but very intense bouts of dyspnea which seem to spring out of nowhere. The sensation is like that of sudden suffocation. It’s like someone put a bag over my head. It feels like my respiratory muscles are too weak to expand my lungs when I take a breath in. The sensation makes me anxious, which then perpetuates this viscous cycle of not being able to catch my breath. It’s awful. This video ,which Ive used before in my blog posts, does a great job of depicting what these intense mini attacks kinda feel like. The only difference is that I don’t struggle the way the actor does in the clip.
  Thankfully these bouts only last an hour or two and are usually relieved with meditative breathing, multiple back to back neb treatments and sometimes opiates. Unfortunately, these intense flares seem to be occurring more frequent now….almost daily. They’re probably a result of declining lung volumes and increased sensitivity to air-trapping.
• For the last 6 months I’ve also noticed a slight, but persistent audible insp wheeze when I breath. Hence, the “Inhaler voice” It’s more annoying than anything else, but I hate the way it makes my voice sound. ENT actually checked my vocal cords and they look fine ( no stenosis)
• It’s becoming increasingly more difficult for me to sleep laying flat. I now have to pretty much sleep with my back propped up, almost to a sitting position. Last year I switched from a conventional bed to a foam bed, which helped ease my lower back pain.
• A noticeable decreasing tolerance to exercise and physical exertion in general. I get winded much easier now when I do any type of exercise or walks.

Incarcerations

• 2 hospital admissions so far this year, totaling 12 days. 8 of those in the ICU, and 2 of those on a ventiltor.
• Ive had one intubation this year, bringing my lifetime total to 16 ( we’re talking Ripleys Believe it or not stuff)

Fitness and Diet
• Despite my worsening dyspnea, I still force myself to walk at least 4 days a week ( 4-6 miles per walk) and even farther when I’m training for a race.
• Earlier this month, I switched to an all organic diet. Additionally, Ive cut my sugar intake in half and eliminated HFCS almost completely. It’s way too soon to see how much of an impact this new way of eating will have on my health in general, but I suspect it will eventually be a positive one. How could it not.

Treatment Plans
• My Asthma action plan and medication list are pretty much unchanged, except that I take methadone (10mg) every evening now.

New Treatment Options
• Bronchial Thermoplasty is no longer an option for me. My asthma is too severe, my lungs are too scarred. (* Speaking of Bronchial Thermoplasty, this is one of better articles Ive read on the subject. It’s objective, factual and well written)
• I’m waiting for clinical trials to begin ( hopefully by this time next year) on some new Th2 (IL-4/IL-13) blocking drugs.

  Th2 blocking drugs (if they turn out to work), block protein factors related to, but not the same thing as, allergy. These blockers are believed to work “higher up” on the immune inflammatory cascade (where things are getting started) so that they “could” block more things of relevance to asthma. I have a problem with mucus blocking my tiniest airways, which causes me to air trap. (air trapping is the number 1 cause of my suffering). We’re hoping that this new class of drugs might help with that. ( per Dr Sally Wenzel)

For 5 years now, I’ve been heralding the benefits of daily exercise in people who have severe lung disease. That message is plastered all over this blog, and I believe is the reason that Ive lived so long. But wait, just as with every other facet of this frustrating disease, there’s a catch 22.
While there’s no argument that exercise can make a huge difference in the lives of people suffering from lung disease, Ive long suspected that too much exercise also carries with it, the potential for some not so pleasant side effects. Namely, dynamic hyperinflation, aka…. air trapping.

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.

It’s been just over 2 weeks now since I did the Boston marathon, and except for today, which I can’t blame on the marathon, Ive managed to stay pretty healthy. That hasn’t always been the case right after a big race. Looking back on how things played out on Boston weekend, I think the strategy of proactively medicating with prednisone, paid off . If you remember, I bumped up my pred to 60 mg 2 days prior to the race and then rapidly weaned back down afterward. I still got really tight and wheezy immediately after the race and had to take several back to back neb treatments throughout that evening, but thanks to the prednisone I was able to keep things from escalating. I think a lot of the post-race flaring was caused by my body being in state of shock from all the exertion I put it through. As much as I hate the stuff, I think the prednisone did a great good job at protecting my airways during the race and in the hours and days that followed. It might have even kept me out of the hospital.

Another thing I learned from doing this marathon, is that I need to take off a few pounds. I mean it just makes sense that the lighter you are on your feet, the faster you’ll be on your feet. The less you weigh, the less stress you’ll put on your legs and feet and even your heart and lungs. I might not look real fat, but the fact is, I’m 10 lbs over my ideal body weight. For the Boston marathon I weighed in at 150 lbs, which is the heaviest Ive ever been at any of the marathons Ive done. Part of that weight gain was probably from steroids, but I’m sure the bulk of it was from eating too much fattening food during the winter holidays.
Back in 2006 when I walked my fastest marathon ever, I weighed 144lbs. We’re only talking 6lbs less , but that 6 lbs made a world of difference when it came to speed. I ended up finishing that race almost 30 minutes faster than I did this one. Too bad I didn’t pre-medicate with prednisone during that 2006 race, because two days after that race I ended up in the hospital. But back then, the whole marathon/ severe asthma thing was still new to me , and I wasn’t yet convinced that walking a marathon could actually make me sick(which by the way, I fully believe is the case now.) As far as my weight goes, you might not know this, but since I began walking for fitness back in 2004, Ive actually lost and kept off nearly 20 pounds. That’s right, the steroids along with a lack of physical activity, was turning me into a little blimp.

So anyway, to put into action the things Ive learned from the Boston experience, Ive set a goal to loose 7 lbs and then keep it off. I will accomplish this by doing more strength training at the gym and by eliminating some of the junk food from my diet. I hoping to knock these pound off in about 2 months, just in time for my next gig ( whatever that might me). And from now, every race I do, I’m going to bump up my pred. Yes, I hate the drug, but if it will keep me out of the intensive care unit, I’ll take it.

Speaking of the Boston marathon, my friend and ever so funny walking partner/guide in that race , Miss Dizzy Lizzy, is finally getting caught up on her blogging ( Some excuse about not having her laptop). Anyways, she promises to have a race report about the Boston marathon , up by this weekend. I love reading other people accounts of that race.

Ok, so I look really strong in some of my finish line photos, but believe me.. looks can be very very deceiving. I’m an expert at hiding what I feel inside (I think most asthmatics are, to some degree.) Behind those smiles were waves of excruciating pain shooting down my legs. My breathing was really labored at times and my calf muscles felt like they were going to explode, but I told myself at the start of this race that if I made it past mile 21, that no matter how bad my breathing was, or how much pain I might be in, that I would push on with positive thoughts in my head and a smile on my face….And that’s exactly what I did! And if for no other reason, that’s why I’m so proud of myself for finishing the race in style.

If you look really deep, you can see the pain starting to come through
(Finish line photos)

I don’t care how healthy you are, even if just walking a marathon, when you get to a certain distance in a race, your body starts to hurt really bad (I think that’s what they mean by “Hitting the WALL”). The problem is, you can’t really stop moving or you run the risk of your whole body cramping up. It’s happened to me before, and I’m telling ya..it ain’t a pretty scene. A full body cramp would end the race for you , right then and there. So after 20 miles, you do whatever you can to stretch out those muscles while you’re moving, but you never stop.

So what did it take to get this 55 year old severe asthmatic across the finish line at the Boston marathon?
Well, how about lot’s of training, lots of medications and a ton of determination and willpower! Having a good friend walking along side of you , who makes you laugh constantly, probably helps as well.. Thank goodness for Lizzy.

Here are couple photos I left out of the main photo set. I think you know why…

(Had to stop to sneek a neb treatment about every 7 miles along the course… this eats up a lot of time )

( Needed 3 neb treatments back to back after crossing the finish line. )

Here are a few other things you probably didn’t know

*To control my asthma during this 26.2 mile race, in addition to the neb treatments every 7 miles, I took appx 24 hits off my inhaler ( about 3 puffs per hour). On top of the inhaled drugs, I swallowed 10 mg of prednisone every hour , chased by an antacid to control the stomach burning that the prednisone causes in the first place . Thank You Jon ( our spotter who went and got me some TUMS in the middle of the race.

*To control the pain in my calve muscles and the metatarsalgia pain in my feet, I took 2 Motrins every 2 hours along the course, 6 in total.

*For energy and hydration , I consumed 2-4 oz of plain water every mile, alternating with Gatorade every other mile. I did this for the first 20 miles, then switched to a 50-50 blend of electrolytes and water (2 oz) every mile for the rest of the race. In addition, I swallowed one Powerbar gel ( tangerine with double caffeine) every 6 miles.

So as you can see, doing this race ( or any other for that matter) wasn’t as as easy for me as most people might think. I just make it look that way:-)

Training for a marathon is no picnic..it’s hard work, but I’m a happy to report that I’m now 3/4′s finished with my training. With the exception of a minor, but troublesome foot injury, I’ve managed to survive this training session better than some of my previous ones. My lungs have been holding up pretty good too, with only a handful of bad breathing days so far.

Last Thursday I attempted the dreaded 21 miler, (aka, the marathon before the marathon). The walk did not go as well as planned. My legs were starting to ache from mile 1 and only got worse as I went on. Due to ill fitting shoes (the new Saucony’s) and that nagging foot injury, I was only able to complete 19.2 miles. Talk about pain, and this on top of an already arthritic body. The walk left me totally trashed and as expected, threw me into my yellow breathing zone for a couple of days after. I would have stopped at mile 10 and re-attempted the walk the following week, but there simply isn’t enough time.

With less than 3 weeks of training left , I can’t take the risk of anymore injuries, so Ive decided to start tapering off my mileage right now and just hope for the best. For the remainder of my training walks, which consists of 2 more long distance walks ( a 14 mile and a 10 mile) and 8 more medium distance walks ( 4-6 miles each), I will be back to wearing my Asics Hyperspeed IIs . They might not be the best shoes for me, but my feet are used them and they haven’t caused me any injuries. The Sauconies are OK for short sprints, but not for long slow walks.

Getting back to that foot problem, Ive developed what they call a metatarsalgia in the ball of my left foot. It’s a fairly common injury in older marathoner runners, and normally it wouldn’t be a big deal, but because I’m supposed to be walking a marathon in just 3 weeks, it’s a potentially huge problem. What happens, is that because I’ve trying to avoid landing on that part of my foot when I walk, I end up landing instead on the outer edge of my foot which is causing the rest of my leg to get sore. Add to that the pain of an already arthritic body, and it can make walking long distances pure torture. If it flared up during the marathon, it could prevent me from finishing the race. I’m hoping now, that because I’m finished with the majority of my long walks, that my foot will have more time to heal…albeit 3 weeks isn’t much time.

(See the redness circled under my big toe?)

On a more positive note, Ive had fewer problems this year with calf cramps, which I attribute to better stretching and better hydration.

As far as my asthma goes, my lung function has been been fairly stable. This time of year tends to be when I have my best breathing, which is a good thing. I do however, get short of breath much easier these days, especially when I exert myself. Even my shorter walks are taking a lot more out of me than they used to.

Assuming that I have the good fortune of crossing the finish line at this marathon, this will definitely be my last full marathon. As much as I love doing these races, my body just can’t tolerate 26.2 mile distances anymore and/or the training it takes to prepare for them. Ive now done 6 full marathons in just 5 years and I think that’s a respectable number to retire at. Half marathons are challenging enough, and I think I still have a few of those left in me.

Just a year ago I was routinely hitting 370- 380 on the peak flow meter, representing the upper end of my green zone. Well, looks like those days are over.

Though Ive been breathing pretty decent lately with no major flares, on a good day Ive only been hitting 310-320, maybe 330 on a stellar day. In fact, I haven’t been able to top 330 in over 8 months now, which is a little discouraging.

I’m not sure if this drop in my maximum peak flows numbers( personal best ) represents an overall decline in my lung function, or if it’s just that my larger airways are getting stiffer , but in order for my peak flow numbers to have continued relevancy, I had to recalibrate my breathing zones. ( If not, Id be in the yellow zone ALL the time) My personal best is now 330 instead of 380.

Here are my new re-calculated breathing zones:

Rick over at the Respiratory Cave wrote an excellent post about peak flows. As he points out, one should never rely solely on their peak flow reading to assess their breathing status. The only reason I do peak flow measurements at all , is because I sometimes have a blunted perception of my own dyspnea and can’t always tell when I’m getting tight. The peak flow meter gives me a visual clue and provides me with an actual measurement of my lung function.

Suffice it to say, I wasn’t exactly a happy camper when I wrote that last post about my little prison stint. At the time, I was roided out of my mind and still very sick. Dr W helped me get through this awful time by reassuring me that what anguish I was experiencing, was a normal response after suffering such a severe flare up, and that my complaints were not really unique. (darn…seems the only thing unique about me, is the number of times Ive been intubated)

But what a difference a few extra days can make. I think it was Thursday that I finally …”Turned the corner”. As happens so many times when I think I’ll never recover from a severe exacerbation, I just woke up one morning, and all of sudden… I was breathing better and feeling better! It’s as if whatever was causing my lungs to act up in the first place, just burned itself out and left my body.

It’s astonishing how fast the transformation can happen too… One minute you’re feeling crappy, the next you’re feeling fine. This probably sounds strange, but for a while there it actually felt kinda weird to be breathing easy. All day yesterday I caught myself conscientiously trying to analyze my own breathing to see if indeed I was breathing normal…or I was imagining it. No wheeze, no difficulty exhaling, no discomfort…just normal breathing! So weird, but so appreciated. Id give anything to be able to breath like this all the time. Healthy people take their breathing for granted.

So with this most recent revelation, and after having survived literally dozens of these types of exacerbations, I put all my observations together and made a list. Ive been able to identify 6 distinct phases that I go through during the recovery phase of a severe asthma exacerbation that required a hospital admission.

Just for fun I call it ” The Recuperative phases of a severe asthma exacerbation” . The word hospitalization is important here, because the recovery phase from a severe exacerbation that did not require hospitalization, doesn’t seem to follow the same pattern.

Here’s the list in the order of occurrence. Can anyone else relate or add to this?

So that’s my asthma recovery check list. I think every physician and RT who takes care of asthmatics should familiarize themselves with this list to get a better insight as to what we go through AFTER we get out of the hospital.

(Arterial Line)

Thanks everyone for your support and especially to Kerri and Dr Wensel for staying in close contact during my 98th hospitalization. Thanks also to ALL the wonderful nurses who took care of me..You guys are awesome! Most of all, thank you to my dear Douglas who goes through hell every time I get sick. I’m so sorry I put him through this. Yes, living with a brittle asthmatic is definitely not for wimps.

Im starting to sound like a broken record with these hospital reports, but no kidding, this flare-up was no picnic. It ranks up there as one of the worse on record for me. On a scale of 1-10, probably an 8 or 9. I was pretty sick there for a while and was starting to have doubts as to whether I was actually going to pull through it. But it seems I have more lives than all my kitty cats put together and will apparently live to do this all over again sometime the future ( I just hope it’s not the near future).
Not sure what the trigger was this time, but I’m guessing that the cold I had from the previous hospitalization never quite went away. ( walking in the rain last week probably didn’t help either)

The primary problem this time, and what usually happens when I get really sick like this, is something called CO2 retention. The act (or work) of breathing becomes so hard, that the level of CO2 in my blood climbs really high ( what they call respiratory failure). I was in failure for 4 days with PCO2s ranging from 38 to 70 (when breathing at a rate of 50, that’s not good) My lungs get so tight, that I can’t move any air…I don’t even wheeze! When you listen to my lungs ,you can’t hear any air moving.

Because of all the problems I experienced with lack of sedation while I was on the ventilator the last time, I chose not to be intubated this time ( probably a mistake,because it would have immediately lowered my Co2). Instead , we relied mostly on cont alb nebs, bipap, and steroids to reduce my CO2 indirectly. Thanks to a call put out to Dr Wenzel ( who btw, was in London England at the time), a huge increase in my steroids was ordered along with a few other strategies she recommended, seemed to set the stage for my eventual improvement. Finally on the 3rd day with the increased steroids on board, my lungs started opening up , my work of breathing decreased, and my CO2 started to fall. By day #4 my PCO2 was back to normal and I was starting to wheeze again ( a good thing) . Ironically, while all this was all going on, I found out that there was actually a world-wide shortage of propofol. So even if I chose to be intubated, they would have probably used an alternative sedative agent. Weird huh

On day # 5 I was stable enough to be transferred out of the ICU to the step down unit where I continued to improve. On day #7 I was bugging them to let me go home. On day #8 I was paroled.

This time around I thought Id do something different and post some of the good pictures instead of the bad ones. Of course, I still have to include my battle scars pics. I must have been stabbed 50 times just to gain access to 2 functional IVs and one arterial line. My arms look like black,blue and green swiss cheese and are really really sore.

Today, Im breathing a little better, though my lungs sound like a washing machine during the wash cycle. Course and wet sounding wheezes that you can hear from across the street. Again, this is a good thing and means that my lungs are opening up. The danger is not quite over, as there is a possibility that I could rebound during the next few days, but I think for the most part, I’m over the proverbial hump. In any event, I can already tell that recovering from this exacerbation is going to be slow and difficult process.

This may not come as a big shock to everyone, but these recent flares have taken such a toll on my body, that a Boston victory seems unlikely. There’s just not enough time to regain the training Ive lost. Having said that, I’m not going to let asthma stop me from doing what I love. Boston may, or may not happen. We’ll just have to wait and see.

Just one final thought…..Though I may look happy in the pictures above, it was all for the camera. I’m a ham, no doubt, but I’m also human. These recent exacerbations( 3 hospitalizations in 3 months) have left me incredibly frustrated and down on myself. Steroid induced or not, right now I’m in a pretty deep depression that I’m not sure how long will take to climb out of. I’m not really sure that I even wanna continue blogging about my disease. I hate to be selfish, but lately, just the word “asthma” or the thoughts it provokes, make me wanna run and hide. If I seem slow to respond or update, please bare with me. Thank you everyone for being such good friends. We have built a huge community around our disease and are getting the word out. You should all be very proud.

Postscript 2-7-2010; I had no idea I would strike such a chord with my friends over my comment about not wanting to blog about my asthma anymore.
Don’t worry, I will definitely continue to blog and post on asthma support sites. Maybe not as often , and maybe not focusing as much on my own asthma, but I will definitely keep everyone up to date on what’s happening in my crazy world. I’m just really burnt out right now and I need to focus my attention on things other than my own breathing. Ive been blogging about my asthma and my declining health for 5 continuous years now. I don’t want to be one of those people who chronicles their own death(as noble as that may be). I need to start paying more homage to my idol, the King of the ballad , Mr Manilow. (I haven’t even seen his new show at the Paris Vegas yet.)
So NO worries…. I’m not going away, my life is way too fascinating to keep all to myself

Ever since I got out of the hospital for this last flare-up, Ive been noticing that when I take deep breaths in, I can hear (and feel) a slight inspiratory wheeze or airy sound coming from somewhere in my throat. More bothersome than the sound, I can actually feel some resistance as well. It feels like I’m breathing through a narrowed tube.

At first I thought that because I was weaning off the pred too fast, that my airways were rebelling by tightening up, but this sensation feels different than regular bronchospasm. Although very mild, it feels more like a permanent constricture in, or around the area of my vocal cords.

Well , after a week of trying to rule out possible causes, it finally dawned on me….. I probably have some kind of Tracheal Stenosis” or a vocal cord injury, related to my last intubation. I spoke with Dr W and she totally agreed with my assessment. An ENT doctor will have to look down my throat with a scope to confirm whether this is actually the problem, but I’m pretty confident it is. My only question is, is it my vocal cords that are jacked up, or is there some narrowing of the upper airway itself, and more important, can it be fixed?

From what little I know about this subject from working as an RT, Tracheal Stenosis is basically a narrowing of the trachea , either above or below the glottis, and is usually due to trauma caused when an Endotracheal tube is inserted in your windpipe ( Intubation).Although modern ET tubes are designed to be gentle on the airways, the physical presence of the breathing tube in your airway, can still cause damage and scarring to the surrounding tissue. The result, is swelling and/or thickening of that portion of the airway. The amount of time that the ET tube is in your airway is an important factor, as you’re more likely to develop a stenosis if you were intubated for a long period. But, that’s not always the case, especially when you’ve been intubated as many times as I have.

Up till now, this has been little more than an annoyance ,which only bothers me when I try to take a deep breath in. I am a little concerned however, that this could turn into a very serious problem the next time I have a major flare, so I just as soon get it checked and corrected as soon as possible.

Whatever IT is, I must still have it, because today I walked 10 miles. And I couldn’t be happier about IT!

Now, I’m not going to say it was easy, cuz it wasn’t. In fact, it was one of the most difficult training walks Ive done in a long time. My lungs got tight right off that bat, and by the time I got to the 6 mile mark, I was hitting on my inhaler every 5 to 10 minutes (12 puffs in all). Did I mention that a bunch of thunderstorms erupted and it poured down freezing rain almost the entire 2 hours and 43 minutes that it took me to finish the walk? ( shame on you weather man) Yup, I was soaked to the bone and wheezing like a punctured set of bagpipes, but I pushed on, and man… did I feel alive!

Note to myself: I will definitely need to take a couple neb treatments during Boston and also during my longer training walks, because the inhalers just don’t cut it when I’m over exerting myself.

It’s now or never –I’ve got some serious walking to do.

If all goes well, I’ll be kicking off my Boston marathon training this Saturday with a 10 mile bridge to bridge walk in San Francisco. For the next 12 weeks (lungs permitting), I will be walking my ass off, and in the process will rack up close to 300 miles. From this point on, I will need to focus a 100% of my attention on my training , so I’ll probably be blogging less frequently. I will however, post a weekly update of my progress.

I’ll be following the training template below. Because I’m already a month behind, I’ll be entering at the 3rd week of the schedule and finishing on the 16th. To cram this much this training into such a short period, will definitely be a challenge.

(click to enlarge)

As with previous training sessions, I’ll be doing most of my lsds (long slow distance) walks, in San Francisco along the waterfront and Golden Gate Bridge, and my shorter 3-5 mile tempo walks, in Crockett, California on the Al Zampa Bridge.

So you might be asking , why is all this training and preparation so important for someone who is only walking a marathon vs running one? Well, 26 miles…. is 26 miles, whether you run it, walk it, or crawl it. It’s not like you’re given a week to complete the race. If that were the case, anyone could do a marathon. I have 7 hours to cross the finish line at the Boston marathon, which equals a pace of about 16 min/mile. If you’re not quite sure how fast that this, just imagine walking at a brisk pace, non-stop, for 7 + hours. I assure you it’s not easy, even for people who prepare for it. The average body is not build to withstand the stress of trekking 42 thousand meters without a break. No matter how healthy you are, you need to train for these kinds of races.
Then there’s this little problem I have with my lungs. My lung function is less than 50% to begin with, and on top of that, I have very severe asthma. Put all these things together and you can see why training for a marathon is such a big deal for me.

Ive only been out of the hospital for 2 weeks now, and because my shortness of breath and exercise tolerance have worsened this past year, until I know how my body is going to react to some of these upcoming training walks, I can’t really say with certainty, if I’ll be up to the task of completing, what would be my 7th marathon and last marathon.

Preparing for an event like the Boston marathon also requires a huge commitment of time, money and sweat. For this reason, I’m not going to make a final decision about my participation in the race until Jan 30th. Here’s hoping for a green light.