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.

At Hansi’s Carmel home the day before the Big Sur marathon

To make the challenge even more rewarding, Hansi ended up taking 1st place at Big Sur. Francis had respectable finish times in both races as well. Heck, between the two of them, they’ve probably finished more than a hundred marathons in just about every country on the planet. My hat’s off to the both of them!

Read Frans 2010 Boston marathon race report. Lots of pics and vids too.

But, first let me start by acknowledging some wonderful people who helped make this a truly special day for me.

My walking partner in the race, Mike Mc Bride.
Our super cool spotters, John and Chris from the BAA
Our fantastic crew, Pete from Apria Health Care, and Tom and Brett from Caire Medical and Brett’s wife Shay.
The wonderful folks at the University of Pittsburgh’s Asthma Institute
And finally, our special course guide, the one and only Lis Shepard , who drove the spectators wild and who stuck by me the entire distance just so she could cross the finish line with me. A pretty awesome lady I’d say!

Introducing
“TEAM WHEEZY”

(hey…where’s Lis at? )

( Oh that’s…right, she’s yacking it up with the Boston Globe reporter dude)

So here’s a collection of unedited short clips that I took with my phone camera. Sorry, the video quality isn’t too good, but I wanted to give you a sense of what it’s like to be the first AND last people out on the Boston course. This pandemonium goes on goes on for 7 FULL hours!! See if you can hear my name being shouted during the middle and end portions of the clip. Every time my spotter John would see I was having problems with my breathing or my legs, he’s get the crowd cheering for me. It was like a magic potion that kept me going.

26 miles and 7 hours later , watch how Lizzy works the crowd and helps me make it to the finish line 6 minutes later. Again, this clip is a little long, but I wanted give you an idea of just how many die hard spectators waited for us to finish and how much fun it was to have Liz along for the ride.

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

Take for example Keven Counihan. Kevin lost part of his right foot in an accident with a lawnmower. 15 years later, he was in a near-fatal car accident that caused extensive knee, arm, hip, chest, and shoulder damage. Despite all this, and after years of rehabilitation, Kevin focused on running again and set his sights on the marathon distance. In the 7 years since he started marathon running again, Kevin has finished 99 marathons, and hopes to complete his 100th at this years Boston marathon! Pretty amazing Id say. Check out this recent article and Video about Kevin.

Then there’s Kelly Luckett, another awesome athlete. This is her 6th consecutive Boston marathon. She’s also done 21 Ultrathons (50ks) and over 80 shorter races. Kelly came in at 3rd place in this division in lasts years race. Way to go Kelly!

Can’t forget this guy. He is absolutely amazing to watch. Richard Whitehead is a congenital double amputee from the UK and quite a celebrity there. He has broken several world’s records, including the 2009 Rome marathon. I was there when he became the first amputee athlete in history, to break the 3 hour mark in a marathon. Absolutely incredible!

Last but certainly not least, there’s my good friend, Mike Mc Bride, who climbs skyscrapers for fun. Mike will pull an 80lb oxygen cart behind him for 26.2 miles. The fact that he does what he does, given his type of lung disease, still blows me away. He may not be lightning fast, but he has more fortitude and guts than most healthy people half his age. Check out this recent article in the Boston Globe

So, how does it feel to stand next to these phenomenal athletes at the starting line in Hopkinton, Massachusetts? IT FEELS INCREDIBLE !!

So as not to bore people waiting for me to update, I’ve added a new feature to my blog called “Posts from the Past” ( sorry, not very original title). I did this to highlight my older posts, some of which are actually pretty interesting. A lot people who visit my blog don’t realize that I have more than 5 years of archives. I know it can be a hassle digging through category tabs to find what you’re looking for, but I think this new widget can offer some good starting places if you’re so inclined.

An avid skier, Jim wasn’t a racewalker himself, but he would often come to San Francisco to cheer the rest of us on during our races. Jim also treated me to my first Giants Baseball game.

Jim was about my age, and though he had been battling his disease for years with weekly chemotherapy treatments, you never heard him complain about it. I was continually amazed by his perseverance, and somehow always figured that he would out live me.

[Jim, his wife Vickie, Me, Brandon and Rachel at the 2006 San Francisco Marathon]

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]]> http://breathinstephen.com/farewell-jim/feed/ 7 http://breathinstephen.com/the-sarp-experience/ http://breathinstephen.com/the-sarp-experience/#comments Sun, 22 Nov 2009 18:42:37 +0000 Stephen http://breathinstephen.com/?p=9283 Welcome to Pittsburgh, Pennsylvania for the Severe Asthma Research Program

(I just noticed what it says on the pillow)

Well, the trip was a success and the project went off without a hitch. However, the results that emerged from some of the studies they did on me , are not so good.

First , the good news…..

I finally got to meet Dr. Sally Wenzel (up close and personal you might say, considering she analyzed my DNA and probed around inside my lungs). It’s difficult for me to find just the right adjectives to describe how I feel about her, so I’ll just say … I love this women! She’s like my pulmonary physician soul mate. I admire her, not only because she’s an awesome Pulmonologist and research scientist, but mainly because of her fiery personality and the passion she has in trying to understand asthmatics and what makes us tick. And get this….she’s a good listener too! She actually cares enough about what you have to say, that she takes the time to listen. Imagine that.

I think Sally (Dr Wenzel) probably knows more about asthma pathology and the personalities of asthmatics in general, than any non-asthmatic person Ive ever met. It’s absolutely uncanny the things she knows about our disease and how we behave and live. She understands things about asthmatics that they don’t teach you in medical school. Things that you would only know by interviewing thousands of us and immersing yourself in the severe asthma culture. I could spend literally days just talking with her about this subject. We seem to teach each other. I am so lucky that I was given the opportunity to hook up with her. I think we will be friends for a long time.

The accolades don’t stop with Dr Wenzel, there were dozens of other wonderful people involved in this study as well. Here are just a few that Id like to mention by name and position.

Erin———–SARP research coordinator extraordinaire.
Cathrine RN—-Dr Wenzel’s assistant and other right hand
Mat tech——Very cool PFT tech.
Celo tech—–Just one of many super cool people on the bronch team
Trish RN——-A special Nurse. She actually called in on her day off to see how I was doing.
Lindsey RN—–Probably the sweetest Nurse Ive had the pleasure of meeting
Chuck RN——They don’t get better than this “young man”.
Rose RN——-Kind, Kind, Kind!
Michelle RN—-A Super Nurse.

To the above people , Id just like to say Thank You!
In all the years that Ive been in and out of various hospitals and clinics, Ive never come a cross a better team of compassionate and caring medical professionals like those associated with the SARP study, especially the people who took care of me in the Translational Research Care Unit at UMPC after my bronchoscopy. Kudo’s to you guys!

As for the SARP study itself, well, it’s probably the best coordinated and well thought out research experience Ive ever been a part of. With so many ancillary departments involved, like Nuclear Medicine, Pulmonary Functions and Diagnostics , it’s amazing how smooth the whole system runs. Everything is coordinated and timed down to the minute. In the bronchoscopy room, they actually had a group of lab personnel standing by in their running shoes, so that they could literally run the tissue samples over to the lab the moment they they were removed from my body. This method ensures that the samples will be ultra fresh. (I think).

Btw, if you’re not familiar with this part of the Country, the University of Pittsburgh and it’s affiliated medical schools ,hospitals and clinics, is massive in size. More like a small city, I counted at least 4 city blocks of medical buildings 2 and 3 deep. Some the size of mini skyscrapers, all connected through a series of enclosed pedestrian bridges. Pretty neat since it snows here in the winter.

Here’s an abbreviated version of my actual testing itinerary:

Wednesday Afternoon: Completed a ton of questionnaires,did a verbal interview, and did pre&post bronchodilator spirometry, sputum induction attempt.
Thursday: Allergy skin testing (scratch test, not sub q), Full PFT ( lung volumes) pre&post bronchodilator.
Friday: Bronchoscopy prep, ( ie pre-medications and neb treatments), then nasal brushing, then the actual bronchoscopy with brushings and biopsy, but no lavage because of the potential side effects, more pfts
Friday Evening-Saturday,:Monitored in the hospital overnight.

As with any long distance trip , I didn’t eat or sleep very well and I’m totally worn out, but the effort of getting here to Pittsburgh to do this study was totally worth it. Definitively a positive experience and I would gladly return again if asked.

(Matthew, myself and Erin in the PFT lab)

(Chuck and Trish, two of the best nurses in the world)

Look at all the blood they took from me

(And check out this reaction I had to Grass allergen compared to tree allergen,which is the little dot to the left.)

Now for the not so good news….

Because this was the first time Ive ever had a bronchoscopy, it’s really the first time anyone has ever gotten a close-up look at the inside of my lungs. And what Dr Wenzel saw down there, wasn’t good. What she saw was lung anatomy that had undergone extensive remodeling. My airways appeared very scarred, stiff and fibrotic in nature…. seems my disease is much more advanced than previously thought. She actually found it quite amazing that I was still able to function as well as I do, let alone still alive. What was baffling to me, is that she couldn’t find any physical evidence of air-trapping or any of the other tell tale signs of COPD or emphysema that I often thought I had. It will be a few more weeks before they’ll have a final report, as they sent bits and pieces of my lung tissue and blood samples to various university labs for analysis, but suffice it to say, my long term survival isn’t looking too rosy right now.

They recommended that I seriously consider lung transplant surgery somewhere down the road. We all agreed that I’m not even close to that point right now, but that when the time comes, I shouldn’t procrastinate, as the waiting time for new lungs can take up to 3 years (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still relatively good(probably from all the aerobic exercise I do), and I’m still able to exercise, though that probably won’t be the case for very much longer.

Who knows, maybe someday I’ll be able to RUN the Boston marathon … instead of walking it!

Update as of 12-15-2009: Results from the computerized quantitative lung scans, did indeed show significant air trapping.

The more I hear about this amazing women and all of her contributions to the study of this disease, the more excited I am to meet her and become one of her research subjects.

As Dr Wenzel jokingly told me the other day;
“A little MORE closing the loop still needs to happen. That is why I am so excited that I will get to meet you and have you personally participate in closing the loop.”

Wouldn’t that be something, if my DNA, lung tissue or some other bio marker did actually help close the loop?

Pretty nice place for an early morning racewalking jaunt..eh?

Solana Beach, California;

The advanced clinic was awesome as I knew it would be. Dave always puts on a hell of a class and is one of the funniest guys you’ll ever meet. I don’t think Ive never been in the company of so many World Class racewalkers at one time. 3 time Olympian, Philip Dunn, was there along with a host of other National and International champions. Also attending the clinic was an up and coming young collegiate racewalker by the name of Jose Moncado . His coach is Chris Rael. Man o Man, can this kid walk fast! More like flying actually…

And speaking of Chris Rael, I finally got to meet him. Chris is the creator of Racewalk Planet TV. Ive been watching his racewalking videos for years (this is one of my favorites, though his son is actually the one who filmed it.). An accomplished racewalker and coach in his own right, Chris produces all kinds of racewalking media, including racewalking videos and podcasts. He wanted to interview me for one of his upcoming podcasts, but I had to skip out early on Sunday and missed the opportunity. Hopefully I’ll get the chance to hook up with him again.

Did I mention that I suck at racewalking? I don’t know what happened. I looked horrible on the video analysis. I was slow, clunky and actually looked worst than I did 2 years ago at the last clinic. I didn’t have that nice smooth roll- through that the good racewalkers usually have. My form was really off. I had what they call “soft knees”, meaning that my landing leg was bending prematurely through my stride. Ok for runners, but a violation for racewalkers. Despite my lackluster performance though, I’m very grateful I got to take part in the clinic. I’m humbled and learned a lot. As Dave pointed out , that’s why you attend clinics ….to get better! And really, how many people get the opportunity to have their racewalking skills analyzed and critiqued by Olympians and National Champions?

Another thing Dave told me, which made a lot of sense, is that training to “regular walk” too many marathons (which Ive obviously been doing the past 2 years), can actually make you a slower racewalker . When you train to walk a marathon you spend a lot of time doing fat- burning, long slower training walks to build your endurance(what they call LSD’s). You gain endurance , but you loose the fast twitch muscle response that you need to be a good racewalker over the shorter distances. He recommended doing more speed drills, making my feet more “active” in all phases of my stride, and stretching out my calves out so that I land on my heel better.

(here’s a shot of me where my form actually looks pretty good)

Anyways, now that I know what I’m doing wrong, I can work on making it better. Still, the biggest problem I face in trying to become proficient in a sport like this, is that I simply don’t have the lung capacity . You can practice on your technique till the cows come home, but if you don’t have good lungs , you really can’t put the whole thing together and you certainly can’t compete in races. For me though, it’s never been about competition. It’s about doing and learning as much as you can for something you have a passion for. If you’re going to walk for fitness, why not learn about the mechanics and science behind it. Why not hang out with people who love the sport as much as you do. I know I’ll never be great at racewalking, but I get out there anyway, because it makes me feel good about myself.

Advanced Clinic , Class of 2009
>

Had to get Philip’s and Dave’s sponsor in the shot

1. The illness I live with is: asthma
2. I was diagnosed with it : at the age of 2
3. But I had symptoms since: birth in 1954
4. The biggest adjustment I’ve had to make is: learning to live WITH the disease.
5. Most people assume: because I’m able to walk marathons, that I’m totally healthy
6. The hardest part about mornings are: that they end too soon.
7. My favorite medical TV show is: I don’t watch medical TV shows.
8. A gadget I couldn’t live without is: my Mp3 player.
9. The hardest part about nights are: making it through them.
10. Each day I take 12 pills, 3 inhalers and 6 nebulizer treatments .
11. Regarding alternative treatments I: have tried just about everything.
12. If I had to choose between an invisible illness or visible I would choose: probably an invisible one.
13. Regarding working and career: I chose something I was very familiar with…..Respiratory Therapy.
14. People would be surprised to know: that I have interests other than asthma.
15. The hardest thing to accept about my new reality has been: I was born with this disease, so it’s always been part of my reality.
16. Something I never thought I could do with my illness that I did was: become the first person with severe lung disease ever to finish the Boston marathon.
17. The commercials about my illness: I think this one depicts it the best.
18. Something I really miss doing since I was diagnosed is: taking my breathing for granted.
19. It was really hard to have to give up: Ive never given up anything because of my asthma, Ive always found ways around it.
20. A new hobby I have taken up since my diagnosis is: Searching for a cure.
21. If I could have one day of feeling normal again I would: RUN a marathon and savor every moment of it.
22. My illness has taught me: that I’m a lot stronger than I thought.
23. Want to know a secret? One thing people say that gets under my skin is: I’m an inspiration
24. But I love it when people: tell me that Ive made a positive impact on their life.
25. My favorite motto, scripture, quote that gets me through tough times is: “life isn’t about how to survive the storm, But learning how to dance in the rain”
26. When someone is diagnosed I’d like to tell them:that they’re  not alone.
27. Something that has surprised me about living with an illness is: that I would meet so many interesting and kind people.
28. The nicest thing someone did for me when I wasn’t feeling well was: stayed by my side till the crisis was over.
29. I’m involved with Invisible Illness Week because: believe it or not, Ive been guilty myself on occasion of judging people by their outward appearance. Shame on me.
30. The fact that you read this list makes me feel: that you’re interested in my answers.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at invisibleillness.com

Milestone #4 Occurred yesterday. See the odometer above? Since beginning this blog in the summer of 2005, Ive walked just over 4,000 miles. That equates to an average of about 83 miles that Ive walked every single month, for 4 years in a row. Not bad when you consider that the average healthy person probably walks or runs less than a 1/10 of that. And btw, those 4,000 miles are above and beyond the regular walking that one would do during a typical day at home or at work.

Milestone #5 …Occurred last week when I completed my 1000th walk across the Al Zampa Memorial bridge in Crockett,Calif. Walking that bridge accounts for more than 2,000 of those 4,000 miles . If you remember, my friend Melvin celebrated his 1000th crossing of that bridge just a few months back.

Milestone #6 …After suffering a near fatal asthma back in August of 2004, my partner was told by the doctors, that I had less than a 50/50 chance of surviving another 2 years. 5 years later, I’m walking marathons.

Milestone #7.. Will hopefully occur in 2 weeks, when I officially become a senior citizen. Yup , I turn 55 years old on Sept 12th ( pretty scary huh). I will have survived this disease all the way from birth to old age.

I wanna thank the folks, Lisa and Regina, over at theEmpowered Zone who were kind enough to send me this really cool hat with their special empowered symbol and the word “BREATHE” embroidered on it. What could be more fitting for someone like me?

I really love the concept behind their products and the fact that they always give back to the community events in which they sponsor. If you get a chance, please check out their line of custom inspirational apparel and Jewelry. They have some beautiful stuff there…. oh…and tell em Steve sent you.

What blows me away, is that this race STARTS at an elevation of 10,600 ft….thats 2 miles up! These two never cease to amaze me.

Unfortunately, I started to flare-up pretty bad during the last two miles of the race and within 5 minutes of crossing the finish line, was whisked away to the hospital where I’m supposedly in serious , but condition. This post was sent out courtesy of the wonderful Social Services personnel at Boston Mass General hospital. I ‘ll write a complete race report in about a week when I return to California, but let me just say this..The Boston marathon experience is everything people claim it is….and more!!

Thanks everyone for your support!

Michael has really bad emphysema and has to be connected to supplemental oxygen 24 hours a day just to stay alive. He actually has a tiny hole in his neck , which allows the oxygen to be delivered directly to his lungs (what they call ” Transtracheal Oxygen ).

Well, despite the bad hand he was dealt in life, Michael competes in marathons and climbs Skyscrapers for fun ! (and for charity). What’s even more amazing, is that he has to to pull a 100lb cart behind him which holds his oxygen tanks. When he does a race he goes through so much oxygen (17 lpm), that he has to have people positioned along the course to help change out all the empty tanks …. A logistical marvel in itself.

On April 20th, 2009, Mike will be the very first person with severe emphysema ever granted a disability slot to compete in the Boston marathon, and I will be the first severe asthmatic to do the same.

Mike’s been a tremendous inspiration for me and many many others, sick or healthy. If it wasn’t for Mike, I don’t think I would have pursued Boston the way I did. When I first applied I didn’t think I stood a chance of getting in. It wasn’t until Mike broke the news about his own success in being accepted, that I suddenly felt a new sense of enthusiasm for what seemed so out of reach before.

Wouldn’t it be something if we pull this off !

PS……Mike did a stair climb today. 54 stories in 28 minutes! Hauling his oxygen and all. Absolutely amazing.