Posts from the Past
No Thermoplasty for Steve

No Thermoplasty for Steve

[JP-Facebook-Like] Ive been getting a lot of email lately from people asking me if I'm gonna have the new clinical trials phase of this new procedure back in 2006, because my asthma was deemed “too severe” by the study investigators. People with ...

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#97 , misinformation and a virus from Hell

#97 , misinformation and a virus from Hell

[JP-Facebook-Like] Battle scars: 4 failed arterial line attempts and 12 failed IV attempts. I have no veins left and my radial arteries are so scarred up from previous insertions, that it's virtually impossible to get access unless they put a ...

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Propofol

Propofol

[JP-Facebook-Like] This is a picture of me on a ventilator last year during a severe asthma exacerbation ( what they call status asthmaticus). See the little IV bottle inside the blue rectangle with the milky looking stuff inside ? ...

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The not so glamorous side of being a severely asthmatic marathon walker

[JP-Facebook-Like] Yeah, I made it to Boston , Ive walked the Rome and Portland marathons a couple times, and yeah Ive been written up in lots of walk magazines and medical journals, but I think a lot of people who ...

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I look too Healthy

I look too Healthy

[JP-Facebook-Like] I get this all the time......... "You look so healthy" "You don't look like you have a disability" "You can walk farther then I can" "You look amazingly fit for someone with severe asthma" "You make ...

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Cracking the stems off of Primatine mist bottles.

Cracking the stems off of Primatine mist bottles.

[JP-Facebook-Like] I don't usually write about my childhood, because frankly, its too painful and because most of it is so outrageous, that a lot of people wouldn't believe it anyway. But just for kicks, I thought Id share one of my ...

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A quarter million puffs

A quarter million puffs

[JP-Facebook-Like] Care for some Albuterol? (Hey.....how did the primatine mist get in there?) I sometimes jokingly claim that Ive

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The Recuperative phases of a severe asthma exacerbation

[JP-Facebook-Like] Suffice it to say, I wasn't exactly a happy camper when I wrote that 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 ...

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Another piece of the asthma puzzle

Another piece of the asthma puzzle

[JP-Facebook-Like] Just got my lung biopsy report back from 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 ...

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Behind that finish line smile

Behind that finish line smile

[JP-Facebook-Like] 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.) ...

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The SARP experience

The SARP experience

[JP-Facebook-Like]Welcome to Pittsburgh, Pennsylvania for the

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My Lung Biopsy findings

My Lung Biopsy findings

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 ...

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Pre-Boston swag

Pre-Boston swag

Most of the marathon attire that Ive accumulated over the last 3 years usually ends up in a duffel bag crammed in the corner of my closet , never to be seen again. This jacket is gonna get worn a ...

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I'm a recovering  Albuter-holic

I'm a recovering Albuter-holic

Rick, the author of the Respiratory Therapy Cave , wrote to me the other day talking about what it was like growing up with severe asthma. One of the things he mentioned that I thought was kinda funny, ...

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Circa 1981

Circa 1981

Attending the recent taping of Barry Manilow's Music& Passion Special in Las Vegas and checking out all the sound production equipment and everything, made me flash back to a time when I was actually doing sound production for a living. ...

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The first few days are the worst

The first few days are the worst

First of all , thank you everyone! for all the nice comments. They mean a lot to me. My apologizes for the self pity thing in the previous post. I guess even us butch super hero ...

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The meeting

Before I begin, let me preface this post by saying that I haven't made up my mind as to whether I would even want lung transplant surgery, should it ever get to that point. I wanted however, to see ...

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Off to the Eternal city

Off to the Eternal city

(Piazza Navona) Well, after a close call with my lungs this weekend , in just a few hours and with a ton medications in tow, I'll be on a plane to Italy for the start of my Roman adventure. This ...

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Walk kind of walker are you?

Walk kind of walker are you?

Just as runners come in a variety of flavors (joggers, runners, sprinters, hurdlers, marathoners, ultramarathoners, etc.),not all walkers are alike. They also come in an assortment of flavors. ( Marciatori Racewalking Track... Circa 1900 ) (Italy's Ugo Frigerio wins the 10-kilometer ...

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I'm Hardcore Now

I'm Hardcore Now

GOT A NEW TATT !!! Hmmm...piercing sounds interesting too. Maybe next time.

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Reflecting

Reflecting

It's weird, but when I look at my marathon photos, it's almost like I'm looking at a stranger . It's as though someone else did this race for me and I just went along for the ride. ...

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The nights are the worse.

The nights are the worse.

Ever notice the time stamp on many of my blog entries? I usually compose and publish them in the early morning hours...sometimes way before dawn. You know why? Because I'm usually awake at 3 or 4 in ...

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Walking Expenses

Walking Expenses

Living on a fixed income, I have to track all of my expenses closely. I just figured out that in the last 6 months ,I spent a total of $1175.97 on walking related stuff . This includes fees ...

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My cat has a shoe fetish

My cat has a shoe fetish

This has been going on long before I started fitness walking..............

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Battle Scars......Electrode Gum

Battle Scars......Electrode Gum

Can anyone out there relate to this...... You've been home from the hospital for a few days now, and you still can't get all that electrode gum off your chest? It's like a black rubber ...

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Organic Dairy Question


Happy Cows

Happy Cows.........

You might remember a couple weeks ago I wrote a post about switching to an all Organic diet?    Well, someone left a comment that raised some very interesting ethical questions regarding the treatment of sick organic dairy animals. Because I’m fairly new to the whole organic food thing, I decided to contact one of the better known organic dairy companies, the Straus Family Creamery, for their thoughts on this subject.

Here’s the comment that was left on my blog:

I’m a fan of locally grown, and prefer to grow my own when I can. I’m also a huge fan of grass-fed meat and free-range chickens. The one thing I will not buy organically however, is milk and dairy products. My educational background is agriculture. For me, I have the ethical dilemma knowing that often instead of a dairyman treating a sick cow because that would make her no longer “organic”, they allow her to continue to be ill with “name your favorite dairy cattle ailment here” and often feeling pain. I know a few dairymen in the Central Valley who run both organic and conventional dairies so that if a cow needs to be treated, she can be, then moved to the conventional dairy. Without that caveat I don’t feel organic animal products are ethical or healthier (who wants products from a sick animal?) and quite honestly, most organic producers don’t go to those lengths. I feel that the product from an healthy animal who, perhaps some time ago was treated with approved drugs, is still healthier than possibly sick animals producing a product entering the food chain. Just food for thought…”

And here is the Straus Family Creamery’s response to that comment:

“Hello Stephen
Thank you for your email, we appreciate your inquiry. Well, all organic dairies are not all the same. Some do actually care about their health and well-being while wanting to provide the best possible milk for customers.

In general, medical treatment guidelines on an organic dairy are as follows: vaccinations are allowed; antibiotics and hormones are not allowed.

Aspirin is allowed for use on organic dairies and is given to cows to reduce fever and inflammation. In addition, we use homeopathy to treat our cows when they get sick. Homeopathy is essentially diluted herbs.

Albert Straus originally heard about homeopathic remedies on cows in 1992 when he met one of only two large animal vets in North America who were using homeopathic medicines. Albert then began administering homeopathic remedies on our family’s own herd with good results.

On an organic dairy, cows are not given antibiotics unless it is the only way to save a cow’s life. At that point an organic dairy is allowed to keep the cow, but withhold its milk from sale for a period of 90 days. At any of the Straus Family Creamery dairies, if a cow is given antibiotics to save its life, it will then be removed permanently from the organic milking herd.

The most important aspect of keeping cows healthy is to minimize their stress. We accomplish this by providing clean bedding (we add clean rice hulls regularly), room to move (our cows graze from Spring through Fall when the fields are dry), a balanced diet, plenty of space wherever they are, a cooler climate (which is more comfortable for cows since they don’t sweat) and individual bedded stalls for each cow. It’s a pretty good life for a cow.”



I’m not really heavy into eating a lot dairy or beef in the first place, but I thought that both the question posed by the commenter and the response from Straus Family Creamery were enlightening. I definitely learned something.

What do y’all think ?

Organic Dairy Cows

Photos courtesy of Straus Creamery

Annual Asthma Report Card


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)

Childhood Memories

A Fathers Day Reunion 50 years in the making.

Hey, I gotta question for you? What’s the longest length of time you’ve ever been separated from a loved one until being reunited with them again? 5 years, 10 years, maybe even 20 years? How does four and a half decades sound? About a week ago, my brother and I took a very special trip [...]

Alternative Asthma treatments

Going Organic

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? [...]

Achievements

My First Adsense Paycheck…Woohoo!

Wow…Ive hit the big time! I’m major player now. A force to be reckoned with. At the top of my game. Watch out world, I’m going places now! Today I got one of these… Ben at his finest.That’s right, my blog is finally paying ME! So after 5 years, I finally reached the $100 threshold [...]

Air-trapping

Is too much of a good thing, bad?

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 [...]

Achievements

Born again Respiratory Therapist

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 [...]

Asthma

The letter

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 [...]

Asthma

Hospital survival Kit, don’t leave home without it.

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 [...]

Lung physiology

There’s a lot going on in our small airways

You’ve probably heard me talk about the “small airways” in our lungs, but you might be surprised on just how small they actually are. Here’s a color enhanced photo of the inner surface of our smallest airways taken with a scanning electron microscope. The hollow cavities you see are the alveoli ,this is where the [...]

My blog

6th incarnation

Unless you’re new here, you probably noticed that I changed the appearance of my blog… (slightly). This is the 6th makeover I’ve done in almost as many years. Hope it looks OK. To be honest, I was getting really tired of all those blue colors in the old layout, and the core theme itself, was [...]

Childhood Photos

ah….the age innocence

Me and my brother at age 5. Can you tell which one is me ? (girlfriend )

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Today, Friday , September 3rd, 2010

Symptoms: Breathing pretty good today.

Fitness: Walking a total of 13 miles today. 11 miles this morning in San Francisco and 2 miles this evening in Crockett.

Other News: Next race is only 4 weeks away!

FEV1:41% O2 SAT: ⇧ 98% Peak Flows:⇧ 87%

Categories

Ive managed to stay out of HERE


for

199
whole days

Approaching a record number of days that Ive been hospital -free!

I went Organic

and gave up
HFCS
82
days ago

Walked



Miles in 2010
and

Since starting this blog on 6-1-2005

Got Asthma?

Become a research volunteer
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Dr. Sally Wenzel
is Awesome!

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Oct 3rd 2010
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April 18th, 2011 Hopkinton,Ma

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Learn from my coach!

Dave Mc Govern
Official Coach for the 2008
United States
Olympic Racewalking Team

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