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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Fancy Smancy Walking Vest

Check out my new walking jacket.
6447-1182_-1475_d

I can’t tell you how long Ive searched for a sleeveless jersey or jacket with pockets, that I could wear on cold days or long training walks and races without over-heating. As a marathon walker with major health issues, I also have to carry tons of stuff with me, but I hate wearing those bulky packs around my waste.

Well, I think I finally found the perfect solution. It’s called the “Thermal Velocity Vest” made by Specialized (the Bike people). This vest/jacket has pretty much everything I want in a cold weather training top. It has a large zippered pocket on the rear, and a sleek breast pocket on the front. But, what makes this vest special, is that it’s made of a breathable material to keep you cool, and at the same time , fits like a wet suit to keep your core body temp warm. And because it’s a vest, your arms can move freely, which is really important when you’re fitness walking or racewalking . I think it will work out nicely for training on those cold days or for walking a course like the Boston marathon, where the temperatures and winds can fluctuate so dramatically .

A little pricey as far as vests go, but I think worth it. If I’m breathing OK this morning, I’m gonna try it out.

vest 007

Questions for Dr. Wenzel

Last week after finding out just how damaged my lungs really are, the only thing going through my head was..WHY? All of the assumptions I had made about my asthma throughout the years, suddenly didn’t seem to make sense anymore. I was beginning to wonder if I really ever had asthma at all? Maybe I just thought it was asthma, when it was actually something totally different? These are the crazy things that were going through my head. I had a ton of questions I desperately needed answered , and since she knows my lungs inside out ( literally) , who better to ask than Dr Wenzel.

Well, not only did she take the time to answer all of my questions, but the answers she gave ….made total sense.
I’m posting some of that discussion here, because I think it might help others out there who are in a similar situation. At the very least, it makes a great refresher course for the RT’s out there.

******************************************************

[Steve ] Because my larger airways are so scarred and stiff, does that mean that they ‘re incapable of clamping up or spasming or narrowing? [Dr. Wenzel]  No, not completely, but certainly will be harder to spasm.

[Steve] If that’s the case, and my larger airways are not clamping down, when I have an exacerbation, is it the smaller airways that are reacting? [Dr.Wenzel] Yes, they most certainly are likely to be and because it is also likely that they are narrower to begin with, just a little spasm COULD effect it a lot.

[Steve] I thought there was no smooth muscle in the smaller airways? [Dr.Wenzel] There IS smooth muscle in your small airways. But, you probably ALSO have “Scarring”/fibrosis in those airways which probably leaves them normally much narrower than normal small airways. Just a little mucus or spasm and they will close.

[Steve] You mentioned earlier that I might not actually have chronic inflammation of my airways.  If there’s no inflammatory process going on, or no smooth muscle spasm going on, what causes the obstruction or air flow limitation when I flare-up? [Dr.Wenzel]  See answers above. In addition, you likely have “loss of alveolar-airway attachments”. The alveolar septae attach to the outside of the small airways and actually help to “tether” the airway open. When those get destroyed, as we think they do in SEVERE asthma, that tendency to PULL the airway open from the outside is lost.

If my airways are non twitchy or non-reactive because they are so stiff,  how is it that I can have severe asthma exacerbations that land me in the hospital and sometimes even on a ventilator? [Dr. Wenzel] Your lungs (I think) are very stiff and when you have an attack your work of breathing becomes VERY BIG. That is why your CO2 increases. In addition, you did have a couple of attacks where your lactate levels did increase… that also goes along with your breathing VERY HARD and causing your muscles to start breaking down.

[Steve] If my airways are so damaged, why do I respond, and even partially reverse, with certain bronchodilators and steroids.[Dr. Wenzel] Although you likely don’t have much inflammation, the little that is there (plus some edema) reverses with the steroids. The bronchodilators likely just relax your smooth muscle enough to have an effect, albeit not a big one!

[Steve] Do I have any elements of COPD or Emphysema? [Dr.Wenzel] NO you don’t have COPD OR EMPHYSEMA!!!!

[Steve]Isn’t that generally the course that asthma takes over the long term? [Sally] NO!!! ASTHMA ALMOST NEVER BECOMES EMPHYSEMA…unless you smoke!

[Steve] Regarding my FEV1s, I think the reason I got a 50% reading that one time, was because I exhaled less forcefully during that particular manover ( I was still sleepy from the bronchoscopy). For some reason, when I blast out as hard and as fast as I can, I get slightly lower numbers. ( I think because my airways are narrowing too fast?) [Sally] YES, that is most certainly the case. There is a FORCED vital capacity and a SLOW vital capacity (meaning just that, that you exhale SLOWLY from Total lung capacity to residual volume) It IS likely that your SMALL AIRWAYS do collapse when you exhale fast due to the external force on the airway being greater than the force holding them open during expiration (when you have negative pressures in the airways themselves) .

And finally, there was this….
[Steve] BTW…..The wager we had regarding me being able to ever blow a 50% FEV1 as a result of using Qvar , was that you would get a new set of golf clubs. [Sally]  hee-heee… I expect only the finest clubs when I get you there!

Air-trapping

The SARP experience

Welcome to Pittsburgh, Pennsylvania for the

Asthma

Off to the Burgh for the SARP

I’m a lab rat…. and proud of it ! The field of Asthma Research desperately needs human test subjects for a variety of invasive and non-invasive clinical studies. If you’re an asthmatic, or if asthma effects your life in someway, you should really consider getting involved. We need to put and end to the suffering [...]

Air-trapping

Darn Dyspnea Dilemma ( Part 1)

……………….Try saying that 5 times really fast. Before reading this post, you might find it useful to read the first two of paragraphs in the “Rick over at the Respiratory Therapy Cave, does a great job of explaining how asthma can sometimes turn into COPD. *************************** On Thursday I had my first appointment at this [...]

Asthma

Introducing Medpedia

Medpedia, the worlds largest health and information encyclopedia project. Well, I’m excited to announce that they’ve just expanded their platform by including a “News and Analysis”, a Q&A section and an “Alerts” feature. Read the latest press release here. Also in the works, and one of my favorites features, is a “Clinical Trials” search engine… [...]

Asthma

Cracking the stems off of Primatine mist bottles.

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 favorite stories. To preface this ,I have to tell to you that I came from [...]

Boston Marathon

I guess lightening DOES strike twice

It’s official, I’m going to Boston…AGAIN! And this time around, I have a sponsor! (details to follow)

Asthma

Closing the loop on Asthma–Sally Wenzel

Found this interesting and informative article about Dr Sally Wenzel, and why she decided to get involved in severe asthma research. It gets a little technical in the middle , but well worth the read. The more I hear about this amazing women and all of her contributions to the study of this disease, the [...]

Air-trapping

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 the morning. And why am I up that early? Because Ive usually had a bad night of breathing [...]

Asthma

Qvar trial underway.

As I mentioned a while back, at the recommendation of Dr Wenzel at the University of Pittsburgh, I decided to do a 3 month trial of Qvar brand ( beclomethasone) . I’m hoping that adding Qvar to my treatment regimen will have a positive effect on my breathing by reducing the number of flare-ups I [...]

Achievements

Race results

Took a while, but I finally got my race results for the San Jose Rock&Roll half….3:08:22 For some reason the results of dozens of people weren’t showing up on the race website. Turns out there was a glitch with active.com when they tried to upload them. Better late than never I suppose. I think there [...]

Asthma

A months supply

This is what a one month supply of my asthma medications looks like nowadays. Pretty scary eh!

Page 7 of 41« First...«56789»...Last »

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

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