Ive been getting a lot of email lately from people asking me if I’m gonna have the new Bronchial Thermoplasty procedure done. The answer is No. Unfortunately, my asthma is too severe even for the thermoplasty ,which is being touted as a treatment reserved for the most severe form of asthma …go figure. Actually, I don’t have a lot of the reactive smooth muscle in my larger airways that Thermoplasty targets. Most of my airway narrowing takes place deep down in my lungs in the smaller airways, where they cant reach with this device.

Hopefully this new treatment will help a few people, but I’m not convinced that this is the magic bullet that we’ve all been waiting for. It also seems that the company’s definition of “very severe asthma”, is somewhat different than my own. Ironically, I was denied entry into the clinical trials phase of this new procedure back in 2006, because my asthma was deemed “too severe” by the study investigators.

People with very severe chronic asthma usually have a fair amount of scarring, and some have less twitchiness in their large airways. It would seem to me, that this new procedure has a better chance of success on those individuals who have mild to moderate persistent asthma, whose primary problem is spastic airways and who don’t have a lot of airway remodeling. Although in both cases, inflammation can play a significant role in asthma and its symptoms. Bronchial thermoplasty is not known to do anything to inflammation.

Even if I was a suitable candidate for the procedure, I’m not really sure I’d want to have it done. There just hasn’t been enough research on it in the real world, and any scientific proof that it actually works, is marginal at best. Now that this device is approved for use in the US, I think it would be wise to wait a while and see what the outcomes will be like.

(Get it?)

Actually, I was inspired by Kerri’s messy drug drawer posts, to straighten up my own medicine storage area. ( There’s all kinds of double meanings here)

No , this isn’t my medication drawer, it’s my medication ROOM! I have so many boxes of Albuterol/Atrovent nebules.. I could open up a pharmacy ( a 120 boxes to be exact).

Can you tell I’m a Virgo? (aka… anal retentive)

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.

You might recall that over the past couple of years, Ive been trying to decide whether or not I should renew my RCP license with the State of California. Since I’m no longer able to work as an Respiratory Therapist, I couldn’t really see any benefit in maintaining my license to practice. There’s also the financial burden of having to come up with the bi-annual renewal fees and all the costs associated with the continuing education requirements. Not a fortune, but still several hundred dollars per year, and living on a fixed income, I have to justify every penny I spend.

Well, after mulling over the pros and cons and listening to all your feedback on this topic, Ive decided to go for it and renew my license. It will cost me $460.00 that I can’t really afford, but like many of you have said, it’s better to have the license and not need it, than to need it and not have it.

Ive been licensed with the State of California continuously for more than 25 years now , and retiring it just because I’m no longer able to work, would be a shame. I’m an RT whether I practice the profession for money or not, so I might as well keep my license current. (Which by the way, forces me to keep my educational requirements up to date).

It took a lot of hard work on my part, but in return, the Respiratory care profession has been very good to me over the years. So, I guess that in itself, is worth the money and effort I have to fork out to keep my license current.

I sent the application in last Monday along with the required continuing medical education units ( CME’s). I ‘ll let you know what happens. If they approve my renewal, my license will only be valid again until this September, at which time I’ll have to renew again and send in another $230.00. It never ends……

I graduated from RT school in 1977, but didn’t earn the RRT credential until 20 years later in 1997

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:-)

Check out my radio interview with Chris Rael over at Racewalk Planet Radio

Chris is an awesome racewalker and coach. It was a video of Chris racewalking(The long and winding road) that got me interested in the sport 5 years ago. I finally had the pleasure of meeting him at Dave Mc Governs advanced racewalking clinic in Solana Beach last October.

( read more)

Well, after all the training, all the planning, and all the hoping like crazy that my sore foot will somehow heal in time and that my lungs won’t act up too bad, for better or worse, to finish or not, the big daddy of race weekends is finally here!

Saturday night I catch the red eye out of San Francisco and should be in Boston bright and early Sunday morning. Mike was kind enough to pick up my Bib and Goodie-bag at the Expo today. This saves me from the hassle of having to go all the way into downtown on the subway after flying all night. The Boston marathon Expo is massive and a great place to buy race merchandise and get all psyched up about the race itself, but there’s nothing I really wanna buy this year and Ive already done the race once, so I’d just as soon skip the crowds and spend the day hanging around the hotel and resting up.The million dollar views of the Boston harbor and skyline from my hotel room are worth the trip alone.

My race top, courtesy of the University of Pittsburgh’s Asthma Institute and the best asthma doctor in the world, Sally Wenzel.
I figure that for every mile I walk, appx 10,000 people will see my shirt sleeves. My hope, is that my presence in this race will attract some much needed attention in the areas of severe asthma research, education and treatment.

Later on Sunday, Mike, myself and the crew are all gonna get together for an early dinner at a nice Italian restaurant. That’s probably where we’ll discuss the logistics of the race and who’s gonna to be doing what, when and where.The plan right now, is to arrive at the Athletes Village in Hopkinton around 7am. This will give us a couple hours to warm up and hopefully meet up with some of the other mobility impaired athletes, some of who’s stories are truly inspiring. The latest weather reports are forecasting intermittent scattered showers along the marathon course. Light, brief showers I can deal with, as long as it’s not too cold.

It’s weird, but I feel just as nervous and excited about this year’s trip, as I did last year. And even though I sorta know what to expect when I get there, it’s all still very much a big adventure for me. The only thing that will put a damper on the fun, is if I have to pull out of race because of my bad foot or my lungs. But no matter how the race turns out, I plan to have a kick-ass time in Boston!

So, that’s it. I’ll let you know how it all went next week after I return home.

To all the other runners out there who are doing Boston, good luck, have a blast, and keep an eye out for me!
To all my friends and readers, thanks so much for your continued support!

Oops…almost forgot, I know a lot of you who live in Canada and elsewhere might not be able to receive the Boston Marathon ATT athlete text alerts, so for those of you who are still interested on how we’re doing in the race, my friend Lis, has agreed to send out tweets throughout the day . Her twitter name is SFAUDIOGAL . I’m sure I’ll be updating on Facebook as well. Cheers!

This news came in after I posted……….

VIEW ALL NEWS HEADLINES

You might be surprised by how many people it takes to get 2 severely lung challenged athletes and an 80 lb oxygen cart across the finish line of the world’s most prestigious foot race.

Our spotters……………………………………Lizzy and Chuck

Not only I am privileged to participate again in this incredible race with my good friend Mike Mc Bride, but this year we have the pleasure of having Lizzy along for the ride. Liz will be Mikes official course guide and will also be helping me out by carrying some of my medications and other supplies. Also on the course with us again will be Chuck, our wonderful spotter from last year. Chuck will tail us on the course on his bicycle to make sure we don’t get trampled by the other runners or slowed down by over-zealous spectators as we pass by. We’re very lucky to get him again.

Our support team………………………..Tom………………………….Brett…………………………….Peter

Without the help of these wonderful people , it would be really difficult to pull this thing off. Thanks Guys (and Gals)! We really appreciate it.

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.

Just got my lung biopsy report back from Dr Wenzel. Seems I have high levels of a type of cell called a mast cell. A “normal” (not cancer) cell that has long been seen in asthma patients. But, mine are a slightly different version, which seems to be more common in people with really bad asthma. These new findings, along with all my other test results from the SARP study, are starting to paint a clearer picture of why my asthma is so severe.

If there’s any good news in all this, it’s that there’s a new drug in the pipeline that could possibly help people like me who have this cellular abnormality.

Dr Wenzel to me;

( 2-24-2010)

Steve, At long last, some MICROSCOPIC pictures of your airway! These are “orange colored STAIN” to identify cells called mast cells. The first AE2typrt identifies mast cells which make tryptase (an enzyme…. we don’t really know what it does, but it identifies this type of mast cell) the 2nd AE2chym is a different enzyme (chymase) also made by mast cells, but a different “type” of mast cells. As you can VISUALLY tell from the 1st slide, you have “orange” everywhere. LOTS and LOTS of mast cells (even though almost all of the OTHER cells we associate with asthma (eosinophils, lymphocytes) are gone) And, interestingly, about 50% or more of these mast cells make the 2nd enzyme chymase, (2nd slide) which we ONLY see in severe asthma. WE think understanding what causes this increase in these cells is REALLY critical to understanding severe asthma. We are WORKING On that… but you clearly fit the picture that we have seen in other severe asthmatics, maybe even to a greater degree than many.

Finally, you ALSO have an epithelial layer (the top of the slide with the oval-like holes in it) and some cilia on top) which is MOSTLY mucus producing cells. LOTS AND LOTS of them too. We think the mast cells and the mucus cells are somehow related and we are working on that. And, there MAY be some drugs that block PGD2 (a prostaglandin molecule also made by mast cells) which MIGHT help your asthma… but probably wont be able to try those for another year or 2 as part of a study, and if they work, 5+ years as a marketed drug. But, there MIGHT be hope!

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