breathinstephen.com » Asthma http://breathinstephen.com Diary of a severely asthmatic wannabe endurance athlete Fri, 30 Jul 2010 23:37:33 +0000 en hourly 1 http://wordpress.org/?v=3.0.1 No Mountain climbing for me :-( http://breathinstephen.com/no-mountain-climbing-for-me/ http://breathinstephen.com/no-mountain-climbing-for-me/#comments Tue, 27 Jul 2010 14:50:44 +0000 Stephen http://breathinstephen.com/?p=15253 Looks like I jumped the gun on this one. After polling my family, friends and doctors, and after reading up on high altitude hiking, Ive decided to heed some good advise for a change and will not be participating in the Mt Evans COPD Challenge hike.

The elevation just makes it too risky for someone with lungs like mine. There’s just too great a chance that I could get really sick. My travel schedule wouldn’t have allowed me enough time to acclimate to the higher elevations of Colorado anyway, so that would have put me at an even greater risk for high altitude complications. I would hate to ruin it for the other participants if something were to happen and I needed to be taken off the mountain for emergency medical care.

To say I’m a little disappointed would be an understatement. I’m the type of person who thrives on mental and physical challenges, so making the decision to withdrawal from this event was tough for me. I was really looking forward to pushing my body to the limits on this one and to see this magnificent mountain range up close and personal. I suppose I’ll just have to get my kicks in a safer , more familiar fashion.

Though maybe not as challenging or as memorable as doing a walk two and a half miles up in the air, later this year I’m planning on doing back to back half marathons ( 4-6 weeks part). I haven’t chosen the exact races yet, but Ive narrowed it down to the San Jose Rock &Roll , the Spirit of Pittsburgh and the Las Vegas half marathons, taking place in October, November and December.
Training for the those races begins for me in less than two weeks.

To the wonderfully wacky people who haven’t chickened out of the Mt Evans Challenge, Good luck up there!

]]> http://breathinstephen.com/no-mountain-climbing-for-me/feed/ 9 Double Whammy Asthma http://breathinstephen.com/double-whammy-asthma/ http://breathinstephen.com/double-whammy-asthma/#comments Thu, 15 Jul 2010 15:52:23 +0000 Stephen http://breathinstephen.com/?p=14772 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

]]> http://breathinstephen.com/double-whammy-asthma/feed/ 0 I think I’ll go climb a REAL mountain http://breathinstephen.com/i-think-ill-go-climb-a-real-mountain/ http://breathinstephen.com/i-think-ill-go-climb-a-real-mountain/#comments Wed, 07 Jul 2010 14:19:10 +0000 Stephen http://breathinstephen.com/?p=15082 How’s this for a view!

In just a few weeks , if all goes as planned, I hope to be standing on that very same rock with a half a dozen of my COPD friends.

The brainchild of my Boston marathon walking partner Mike Mc Bride, the “COPD Mt Evans Challenge” as he calls it, is simply about a bunch of friends with severe lung disease, getting together for a day and hiking to the summit of one of the tallest mountains in the Rockies of Colorado…. just for the heck of it! No, we’re not going to scale an entire mountain, but we will be walking up the steepest portion of one.

Starting in Idaho Springs,elevation 8,700 ft, we’re gonna drive up the mountain road 9 miles to Summit Lake, which is situated at the 12,800 ft level. From there we’re gonna hike the last 5 miles on foot up to the summit of the mountain, which sits 14,220 ft above sea level. My COPD friends will be using high -flow oxygen @ 15 lpm to make the trek up the mountain I hopefully, will not need supplemental O2, but I’ll be closely monitoring my O2 sats just in case.


As you can see in this photo taken earlier this year during a race up the mountain, the grade along certain portions of the road is pretty steep. The part that we’re gonna be doing, gains approximately 1600 ft in elevation in just over 5 miles.

( Mike Mc Bride and Roxlyn Cole testing out their oxygen equip)

What makes this particular walk such a challenge for me (and for the other lungers), is the altitude and the steepness of the climb.
Excluding being a passenger in a pressurized airplane, this will be the highest altitude my body has ever been exposed to. The last walk I did that involved a mountain, was back in 2008 when I did the ET midnight marathon in the Nevada desert. And while it was a much longer walk ( 13.1 miles) , we only reached a maximum elevation of 5,500 feet during the race. The summit of Mt Evans is almost 3 times higher.

My lungs are not a big fan of climbing hills. I can barely walk uphill the two blocks it takes to reach my house, let alone 5.5 miles up the side of a mountain. Putting the physical challenges aside though, the main reason I wanna do this is, is to take in the sheer beauty of it all. I think Mountains are awesome.

If you’d like to read more, or maybe even join us, check out at Roxlyn Coles blog

]]> http://breathinstephen.com/i-think-ill-go-climb-a-real-mountain/feed/ 10 Annual Asthma Report Card http://breathinstephen.com/annual-asthma-report-card/ http://breathinstephen.com/annual-asthma-report-card/#comments Tue, 29 Jun 2010 14:45:10 +0000 Stephen http://breathinstephen.com/?p=15009

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.
    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)

]]> http://breathinstephen.com/annual-asthma-report-card/feed/ 5 Going Organic http://breathinstephen.com/going-organic/ http://breathinstephen.com/going-organic/#comments Thu, 17 Jun 2010 19:07:39 +0000 Stephen http://breathinstephen.com/?p=14498 Here’s a question Ive been asking myself a lot lately (thanks to a most cool brother);

When it comes to improving my fitness, why should I go through all the pain and sacrifice of exercising my body hard everyday, if I’m gonna continue to throw toxic chemicals into it? Doesn’t make much sense.. does it?

Good old fashioned common sense (which sometimes eludes me), tells me that eating healthy and natural untainted foods, surely must be better you for you than ingesting food that is treated with hormones and pesticides. How could it not?
Convinced that this is not only the right thing to do, but also the wisest, I’ve decided to switch from a conventional diet, to an all Organic one.

Ive already started with fruits and vegetables because they’re easier to find at the local markets. As I get better at doing this, I’ll start including dry and canned goods, and then eventually on to meats and dairy. I’d like to be 90% organic in 3-4 months.

Going Organic is obviously more expensive, but cost shouldn’t be an excuse. I spend $60 on gym fees and $25 for a haircut every month without batting an eye. Why would I even think twice about spending a little extra on something that can only make my life better. Besides, there are informational web tools out there that can help you get the biggest bang for your organic buck… you just have to be a savvy shopper and know what to look for. Remember too, that locally grown food takes less gas to transport it to market, which means less environmental pollution. So there’s a positive impact on more than just ones own body.

Without getting into politics of what’s considered safe and healthy, the turning point for me was this; Why do something only half right? Improving your health requires more than just working out regularly, you also need to fuel and nourish your body with clean natural food.
I love this line by Michael Palin……
“All I ask of food, is that it doesn’t harm me.” (Monty Python’s Flying Circus)

Buon appetito!

]]> http://breathinstephen.com/going-organic/feed/ 6 Is too much of a good thing, bad? http://breathinstephen.com/is-too-much-of-a-good-thing-bad/ http://breathinstephen.com/is-too-much-of-a-good-thing-bad/#comments Thu, 10 Jun 2010 15:38:53 +0000 Stephen http://breathinstephen.com/?p=14132 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.

(Was finishing this Marathon worth the the nightmare that followed?)

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.

]]> http://breathinstephen.com/is-too-much-of-a-good-thing-bad/feed/ 2 Born again Respiratory Therapist http://breathinstephen.com/born-again-respiratory-therapist/ http://breathinstephen.com/born-again-respiratory-therapist/#comments Mon, 07 Jun 2010 15:44:40 +0000 Stephen http://breathinstephen.com/?p=12987 Following up on a previous post, I’m happy to announce that the state RCP board has accepted my RCP renewal application. I now have a valid license to practice Respiratory Care in the State of California. Yah….I’m legal again!


I have no plans on ever returning to the traditional work force as an RT, but there’s definitely a sense of security and satisfaction, knowing that I could if I wanted to.

I’m also considering sitting for the National Asthma Educator Certification exam later this year or next. I already do quite a bit of asthma educating from the sidelines, and having official recognition of that skill would be nice to have.

Just as with the RCP license, becoming a “certified” asthma educator is something I don’t really need to do, rather, it’s something that I want to do.

]]> http://breathinstephen.com/born-again-respiratory-therapist/feed/ 6 The letter http://breathinstephen.com/the-letter/ http://breathinstephen.com/the-letter/#comments Mon, 31 May 2010 19:06:06 +0000 Stephen http://breathinstephen.com/?p=13608 I receive of dozens of letters from people living with really bad asthma, but this one really touched me, because the person who wrote it….. is only 16 years old.

Hey Stephen,

Read your website have to say it was quite intriguing! Just want to say you are a hero and a role model for me. Quite amazing what you’ve been through and I take my hat off to you dude! I am a 16 year old guy from Victoria BC Canada writing to you from my hospital bed on the pediatric 4d north tower. I also have neutrophillic predominant asthma I used to have eosinophillic asthma as my IGE level was 16,000 ug. Since then it has changed into neutrohilic and harder to take control of – I feel like you. Sorry if that offends you because I know it offends me when people ask me in the hospital what are you here for? and i say asthma they reply with oh yeah my son has asthma blah blah blah when they really have no idea…when I read your website I saw life through my moms eyes Pretty scary since im used to it. But I was wondering did you ever have high IGE at one point and then your lungs like changed into neutrophillic predominant? and like when you walk don’t you get out of breath at all? it was quite amazing how you walked al those miles. And have you ever used oxygen at home? And whats you’re criteria before you get to go home? for me its Q4 Nebs and 50% FEV1 which takes about 2 weeks every admission! WTF such a flipping frustration I’ve never met anyone like me before and I seem to see it in you. I’ve also been to national jewish hospital in america for further evaluation from ” the big shots” . My FEV1 varys from 45- 50% and FVC of 65%.

Drugs – Spiriva ( for copd) have you ever been on it?
Oxygen 1-2L nasal prongs when in hosp
Formorteral (oxeeze) 12mcg
flovent
azithromycin antibiotic apparently it helps with inflammation in the airways – that’s what they said in Denver at National Jewish hospital – Have you been there?
Ventolin Nebs Q4
Q30 mins when in hospital.
Prednisone 10mg one day 5mg the next alternating when in hops 60mg for 3 days since i had a steroid myopathy I cant get steroids for a long time because there worried abut that happening again ( Diaphragm paralysis) my diaphragm stopped working which made it hard for me to breath was on Bi pap for 6 months
I HATE PRED!
flutter – Chest physio
IVIG every 3 weeks
I am also getting a bronchoscopy which should tell them more about whats going on, as requested from Denver National jewish.

I’m sorry if im bugging you – just thought your page was really inspiring and something to look up to. Thanks for your time Stephen

Darcy Ablak

No Darcy, thank YOU for YOUR time.  It’s people like you who inspire ME !  Your letter made my day.


]]> http://breathinstephen.com/the-letter/feed/ 2 Hospital survival Kit, don’t leave home without it. http://breathinstephen.com/hospital-survival-kit-dont-leave-home-without-it/ http://breathinstephen.com/hospital-survival-kit-dont-leave-home-without-it/#comments Wed, 26 May 2010 16:51:18 +0000 Stephen http://breathinstephen.com/?p=13887 This is what I call my Hospital survival kit. Always packed and on standby 24/7, my HSK is a small carry bag I keep in my bedroom, that’s filled with everything I might need for a hospital stay.

If (or when) I get sick and have to go to the hospital, all I have to do is grab the bag and GO!

hospital survival kit

When you spend as much time in the slammer as I do, there are certain essentials you’re going to need to make your stay a little more bearable.

So what do I have in my HSK ?

*Introduction note: (See this earlier post for more details), but basically it’s a note from your personal physician summarizing your medical condition.

*List of medications: Since I’m probably not gonna be able to do a lot of talking to the triage nurse or the doctors, a pre-written list of all my medications comes in really handy.

*Extra clothing : Underwear, t-shirt , Socks etc.

*Toiletries: A few of the things that can make you feel like a human again, especially if you’ve been on the ventilator for a few days , are some clean underwear, a shave, a shampoo , some deodorant, and of course some good oral care help.

*Extra inhalers: As crazy as it sounds, an extra albuterol inhaler is an essential part of the HSK. Even though you’re in the hospital, it can sometimes take too long to get a PRN neb treatment. I can’t tell you how many times having my inhaler, saved me from crashing. ( If you carry one, my advise is not to tell them or they might confiscate it.)

*Phone and Charger: Hospitals can be very lonely places. Not to mention the hospital room phones can be pretty gross. My cell phone or computer is often my only connection to the outside world. Since I’m sometimes too short of breath to talk, texting is the way to go. And of course the camera is useful for blogging purposes ( as we all know).

* Pencil and paper: If you have a breathing problems, or wanna remember peoples name, or just wanna be able to fill out the food menu without tracking down a nurse, these simple items can be very useful. If you end up on bipap or a ventilator, they’re absolutely essential (unless you’re good with sign language.).

* Credit card and cash: Hospitals are more like prisons than you might think. It’s always good to have a credit card or a little cash on hand, in case you need to buy something.

So, what do y’all carry in YOUR Hospital Survival Kits?

medication list

Hospital Intro Letter

Here we a have medication list, contacts and a summary of my medical history

]]> http://breathinstephen.com/hospital-survival-kit-dont-leave-home-without-it/feed/ 17 University of Pittsburgh Newsletter May 2010 http://breathinstephen.com/university-of-pittsburgh-newsletter-may-2010/ http://breathinstephen.com/university-of-pittsburgh-newsletter-may-2010/#comments Wed, 19 May 2010 13:05:46 +0000 Stephen http://breathinstephen.com/?p=13025

( click to view )

]]> http://breathinstephen.com/university-of-pittsburgh-newsletter-may-2010/feed/ 7 No Thermoplasty for Steve http://breathinstephen.com/no-thermoplasty-for-steve/ http://breathinstephen.com/no-thermoplasty-for-steve/#comments Mon, 10 May 2010 17:31:13 +0000 Stephen http://breathinstephen.com/?p=13038

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.

I’m sure this new treatment will help a lot of 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 moderate to severe persistent asthma, but 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.

]]> http://breathinstephen.com/no-thermoplasty-for-steve/feed/ 1 My drugs are still in the closet http://breathinstephen.com/my-drugs-are-still-in-the-closet/ http://breathinstephen.com/my-drugs-are-still-in-the-closet/#comments Sun, 09 May 2010 03:50:34 +0000 Stephen http://breathinstephen.com/?p=13070 (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).

My medication closet

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

]]> http://breathinstephen.com/my-drugs-are-still-in-the-closet/feed/ 4 Lessons learned from Boston/ http://breathinstephen.com/lessons-learned-from-boston/ http://breathinstephen.com/lessons-learned-from-boston/#comments Thu, 06 May 2010 18:55:55 +0000 Stephen http://breathinstephen.com/?p=12991 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.

]]> http://breathinstephen.com/lessons-learned-from-boston/feed/ 1 WAD 2010 http://breathinstephen.com/wad-2010/ http://breathinstephen.com/wad-2010/#comments Tue, 04 May 2010 13:49:13 +0000 Stephen http://breathinstephen.com/?p=12931
May 4th is WORLD ASTHMA DAY!

ASTHMATICS WANTED!

Can’t think of a better time to recruit people for our
Severe Asthma Facebook Group.
If you, or someone you know has difficult asthma, please join us.

To Dr Sally Wenzel, I’m sure I speak for all the SARP group members and asthmatics from around the world who have benefited from your research, when I say….. Thank you for your tireless efforts in hunting down the causes of this disease and searching for better treatments.

]]> http://breathinstephen.com/wad-2010/feed/ 5 I’m renewing my RCP License http://breathinstephen.com/im-renewing-my-rcp-license/ http://breathinstephen.com/im-renewing-my-rcp-license/#comments Fri, 30 Apr 2010 15:13:20 +0000 Stephen http://breathinstephen.com/?p=12776 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……

Here are two documents that I am very proud of


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

]]> http://breathinstephen.com/im-renewing-my-rcp-license/feed/ 7 Behind that finish line smile http://breathinstephen.com/behind-that-finish-line-smile/ http://breathinstephen.com/behind-that-finish-line-smile/#comments Tue, 27 Apr 2010 17:27:42 +0000 Stephen http://breathinstephen.com/?p=12742 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:-)

]]> http://breathinstephen.com/behind-that-finish-line-smile/feed/ 2 Racewalk Planet Radio Interview http://breathinstephen.com/racewalk-planet-radio-interview/ http://breathinstephen.com/racewalk-planet-radio-interview/#comments Tue, 20 Apr 2010 19:01:26 +0000 Stephen http://www.breathinstephen.com/?p=12664 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.

]]> http://breathinstephen.com/racewalk-planet-radio-interview/feed/ 3 Boston—-7 hours 17 minutes and change http://breathinstephen.com/boston-7-hours-17-minutes-and-change/ http://breathinstephen.com/boston-7-hours-17-minutes-and-change/#comments Mon, 19 Apr 2010 23:00:33 +0000 Stephen http://www.breathinstephen.com/?p=12662

20 feet from the finish line

Details and tons of more photos and videos in the following days.

( This is also the very first blog post Ive ever published from my cell phone…pretty cool)

]]> http://breathinstephen.com/boston-7-hours-17-minutes-and-change/feed/ 9 Bound for Beantown http://breathinstephen.com/bound-for-bean-town/ http://breathinstephen.com/bound-for-bean-town/#comments Fri, 16 Apr 2010 23:03:22 +0000 Stephen http://breathinstephen.com/?p=12414

( 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

]]> http://breathinstephen.com/bound-for-bean-town/feed/ 7 Boston crew http://breathinstephen.com/boston-crew-2/ http://breathinstephen.com/boston-crew-2/#comments Thu, 01 Apr 2010 20:45:39 +0000 Stephen http://breathinstephen.com/?p=11996 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.
Introducing the crew !

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


Tom and Brett from Caire Medical along with Peter from Apria Health Care will be providing us with transportation to the starting line, and will also be providing logistical support for Mikes Oxygen equipment along course. Mike’s tanks have to be switched out about every 6 miles along the course. His crew stays in constant radio contact with our spotter Chuck, so that they know exactly when and where on the course to do the change outs. They can switch out all of his tanks in less than a minute. It’s pretty amazing to watch.

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.

(PS…Sorry, got my Toms and Rons mixed up earlier.)

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