Breathinstephen » Inspiration

Boston 2011 Race Report

Stephen — Thu, 21 Apr 2011 17:36:26 +0000

They don’t call it the best marathon in the world for nothing , and this year was no exception. The weather was near perfect and the spectators and volunteers outdid themselves.

The moment I entered athletes village and the disabled athletes staging area early Monday morning, my worries and stress about the race just melted away. I felt so privileged just to be part of all this for a 3rd time. This year there were only 12 of us in the mobility impaired division. It’s kinda like an exclusive club where the members get together once a year to show the world what they have accomplished.

Here’s some various scenes I captured before and during the first few miles of the race. I think they speak for themselves..

[We have the course to ourselves for the first 22 minutes.]

Strategy– Because I feared I would have problems with my left foot if I tried to racewalk the course, I decided at the last minute to keep my pace up by doing a combination of regular fast walking mixed with some very slow jogging. I would the walk the hills and jog the downhills and sometimes the flat areas. I tried my best to walk on the inside corners of the all curves, but sometimes it was difficult because of all the people on the course. The farthest I was able to jog at any one time (because of my breathing), was about 50 yards. For the most part the strategy was working and I was able to maintain a pretty constant 14:30-15:00 pace for most of the first 20kms. By mile 15 though, the jogging intervals were making me way too short of breath and I had to cut back. By mile 18 I was getting so short of breath, I couldn’t jog at all. I was using my inhaler and neb machine way too much, and my leg muscles were starting to cramp. I thought it best at that point to stick to plain old walking (on Heartbreak hill, even the runners were walking so I didn’t feel that bad). So anyways, I’m tooling along at a much slower pace now just trying to survive the hills (which never seem to end), when I figured I better hit the next pit stop, as my stomach was getting a little iffy. That’s when every thing changed!

The Curse —As I’m stepping out the porta potty at mile 21, I take about 3 steps forward back onto the course, when all of a sudden my left knee decides to totally give out. I mean boom… it just went limp and buckled. As I’m trying to keep myself upright, my “good” leg then decides to lock up on me. I then somehow manage to simultaneously slip on a paper cup and fly face first toward the pavement. I was able to brake the fall with my fingers and forearm, but as I hit the ground and rolled onto my back, both of my legs cramped up and I couldn’t move. (We’re talking full calve and quadriceps cramps…) There’s blood everywhere and my lower body is spasming…what a spectacle. Thankfully, some very cool, but slightly inebriated college students came to my rescue and helped me work the cramps out and made sure I was OK. By then however, the damage was done. I knew the moment I tried to stand up and put weight on my left leg, that my hopes for setting a new a PR went down the toilet. After limping a few yards on it, I was having serious doubts as to whether Id be able to finish the race at all. I was so devastated I just wanted to cry. Why did this have to happen? At that point I was experiencing so many emotions, my brain kinda shut down. I went into survival mode and decided that PR or not, there was no way I was going to quit after making it 21 miles.

To give you an idea of the cup situation, here’s a photo from last year.

The last 5 Miles —Every mile seemed like an eternity. The pain was so excruciating that I was actually moaning and grunting, but I knew that if I stopped, even for a moment, that my body would totally cramp up and that would be it. Frustrated as well, I think I was starting to make Jon ( my spotter) nervous. Here I am limping, blood dripping down my leg, I’m breathing really hard and we still have several miles to go, yet he totally gets how important it is for me to at least finish the race and he continues to encourage me. Heck, even the police, which were everywhere and could obviously see me limping and grimacing in pain, were acknowledging by their facial expressions that it was OK and not to give up …they cheered me on as well. Had this been any other race, I probably would have forced off the course. Anyway, as it turns out, I had made such good time during the previous 20 miles, that even with the injury and the subsequent slow down, I still managed to finish 12 minutes faster than last year.

Lessons learned–I put everything I had into this race and was on track for a 6:45 finish. Then wham…to have this happen just 5 miles from the finish was really disappointing. I guess I could blame it on having the worst luck in the world, but in reality what happened at mile 21 was just a freak accident made worse by some poor judgement on my part. You see, while bolusing with prednisone prior to a race can sometimes keep a post race asthma flare from escalating out of control, it can also cause some wicked muscle cramps. Add to that a group of muscles that are already over-worked from 6 hours of constant pounding, and you have a marathon disaster just waiting to happen. The bottom line, is that I didn’t stretch or hydrate enough, and most importantly, I didn’t do ANY speed training. You can’t train at a slow pace and then expect to race at a fast one. If you wanna be a fast walker, you have to train as a fast walker. But of course, therein lies the catch 22. In order to do any physical activity fast you have to have good lungs. There’s got to be a happy middle in there somewhere.

Final thoughts –My hard luck story isn’t really unique. There were a lot of injuries that day and a lot of suffering going on ( you should have seen all the people who were limping through the airport when I left, it was almost comical.) Race officials later told me that they had never seen so many leg, knee and calve injuries. Weird huh?
Anyways, 72 hours later and different perspective, I’m now feeling a lot less sorry for myself or my race results. I may have lost 20 or 30 minutes with my little acrobatic stunt, but the fact that I was able to continue on despite my breathing, despite some significant injuries and despite some excruciating pain, proves once again ,that while I might be the slowest person on the course, I still am one tough cookie. My spotter Jon who works with lots of professional athletes, made these remarks…..he said “Steve, if it were easy, everybody with severe lung disease would do it. You are truly one of the great athletes that raced on Monday!” I can’t tell you how much that meant to me. Thank you Jon for tolerating me for 7 hours ( his neck was so sore from being on that bike all day) and Thank you to all my cheer-leading buddies for supporting me though my 8th marathon.

Jon and I closing in on the finish line

My left leg gave out right as I stepped on the finish map.

Speaking of race photos, almost forgot….A fellow Dave Alumnus and marathoner whom I had never met, heard that I was in the race and snapped this finish photo of me as I limped across the finish pad ( and later collapsed). Thanks Mary Ann!
(The rest of my race photos are so disturbing, I’m not even gonna buy them this year)

[Post Script] After being evaluated back home, turns out I tore a ligament near my knee and pulled 2 of the quad muscles in my left leg.Walking 5 miles with this injury probably didn’t help matters. They’ll have a better idea of the damage after they do an MRI , but hopefully I’ll be good as new in a few weeks and won’t need surgery.

Training Complete!

Stephen — Fri, 08 Apr 2011 15:14:15 +0000

Taking a short break during an 18 miler on the Golden Gate bridge to mug for the camera.

Rather than rehash what Ive already been documenting on Dailymile for the last 4 months, I’ll just cut to the chase. I’ve successfully completed ALL of my training for my 3rd Boston marathon, BUT I’m not feeling very confident that I will actually finish the race this time.

While I’m definitely in much better shape (both physically and mentally) than I was 14 weeks ago and certainly capable of completing another marathon, my right foot is probably going to prevent that from happening this time around. I have a pretty nasty metatarsalgia in the ball of my right foot (inflammation of the 2nd metatarsal head), which has been bothering me a lot during my training walks. The pain generally kicks in after a few miles and gets gradually worse the farther I go. If the 21 miler I did a few weeks ago is any indication how my foot will hold up during a full marathon, it’s a sure bet I won’t finish the race.

Still, I have no plans to withdraw or cancel my trip to Boston. My lungs have been doing great the past week and I have way too much pain and sweat invested in this to back out before I even make it to the starting line. I may not be able to finish the entire race, but I plan to be there in Hopkinton with my friends on Patriots day and will complete as much of the 26.2 mile course as I can.
To increase my odds of success, I’ll be in total rest mode starting today until race day, which is 10 days from now. Who knows, maybe that will be enough time for my foot to at least partially heal.

Without even touching on the breathing or asthma implications in all this, training to run or walk a marathon is hard, and the older you get, the harder it becomes. This is a risky business and no matter how many precautions you take, s**t happens. The body wasn’t designed to withstand the constant and grueling pounding of pavement with an impact force of twice your body weight. Eventually it’s gonna catch up with you. When that happens, you can either give up and call it quits, or you can pick yourself up, make some adjustments, and continue on. I think the fact that I’ve come as far as I have, considering the obstacles I face, is because I believe in myself 100% and I’m truly passionate about everything I get involved in. I may not be a natural born athlete, but how many people do you know with severe lung disease that have completed 7 full marathons, including the Boston marathon, not once, but twice! And all within a 5 year span.

So yeah, I’m proud of myself for making it this far. If it turns out I finish the race…great! If not, no big deal.

That truly is one beautiful bridge

Alin

Stephen — Mon, 24 Jan 2011 17:15:20 +0000

I probably sound like a broken record when I say this, but it’s true… I might have crappy lungs, but it’s because of those crappy lungs that I’ve been able to meet so many wonderful and interesting people.
My friend Alin certainly fits in that category.

Alin has Autism, Spastic Quadriplegia Cerebral Palsy and an extremely rare condition that effects his heart and lungs, called Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation or (ROHHAD). Because of his condition, he has to be connected to a ventilator every night and occasionally during the day to help him breath.

Alin is an intelligent, articulate individual with a love for all things technical and tactile. He considers himself a nerd of sorts, and for good reason. He’s a near genius when it comes to computers and is also a bonafide Stock Market expert. He became fascinated with stock trading at a young age and found out he had a real knack for picking winning stocks. He’s also active in the ATIA, and in 2010 was a guest speaker at their annual conference.

Alin’s story is both heart breaking and inspiring. He’s an incredibly positive and upbeat person considering everything he’s been through in his short life. He’s had countless medical procedures done and last year had to have a tracheostomy put in. Thanks in part to a loving adoptive family, Alin thrives despite his disabilities.

What I like about Alin, is that what you see is what you get. He’s brutally honest and tells you exactly what’s on his mind. He’s very open about his condition and is not afraid to show off what it has done to his body. He’s the only other person I know who posts his bronchoscopy photos and other personal medical stuff. When I first made contact with him it was like a competition to see who had the most graphic medical photos. Hands down, Alin is the winner in that area.

Anywho (as Alin would say), if you’re so inclined, stop by Alins site and tell him Steve sent you And while you’re there, give him a big hug….He loves Hugs!

I’m Honored

Stephen — Wed, 12 Jan 2011 17:29:26 +0000

Just found out that my story is appearing in the RCB’s annual Newsletter…. “Breathing Matters”.

I’m always flattered when an organization or a person writes an article about my fitness walking achievements, but this one is special because it comes from the same government agency that regulates Respiratory Care in the State of California where I live, and who issued the very license I hold to practice Respiratory Therapy.

I’m certainly not the only asthmatic RCP out there, there are a lots us out there who know what it’s like to be on both ends of the stethoscope. I know this for a fact, because Ive worked with many of them over the years. Heck, some have actually taken care of ME as a patient in the hospital at one time or another (and Thank you by the way). Perhaps my story will inspire some of them to take up fitness walking or maybe tackle a marathon someday, or maybe even share my story with some of their rehab patients.

My message is simple, don’t let lung disease ruin your life. Fight it every step of the way and include exercise in your daily life.

Oh… and one last thing, Respiratory Therapists are very cool people!

(Click the Newsletter cover for the full pdf)

I’m blessed

Stephen — Sat, 18 Dec 2010 20:10:29 +0000

You know what? I might be cursed a crappy lungs, but I sure seem to be blessed with some cool and caring friends. Case in point:

After spending a pretty ugly night in the local ER, I woke up the next day to find a bunch of Facebook alerts on my phone. My talented friend and one women cheering section Kerri M, created this incredible mural for me and put it on my Facebook Fan Page (which she also created). I also found out that she had been posting updates about my condition on her blog. Kerri always finds way to cheer me up when times are not so good, so I guess I shouldn’t be surprised ….but custom artwork? How many people would take the time to do something like that! I love it, and am going to have it printed and framed. Thank you Miss Lovely.
Are you sure you weren’t born in the 1960s?

And how about this one from Danielle(another one of my asthmatic buddies up in Canada) ….So cool.

Thanks Danielle!

OK, Case in point #2:
After finding out that I had been hospitalized again, Sally Wenzel took time out from a convention she was attending in Chicago just to see how I was doing. She spoke to one of the doctors who was taking care of me and made herself available to them if needed. Mind you, Dr Wenzel who is one of the world’s imminent asthma specialists, has never been paid a dime for any of the help she’s ever provided me. She continues to be my strongest advocate for lung transplant and is a dear friend.

Case in point# 3:
During my hospital stay I had the privilege of sharing a room with one of the kindest, most compassionate and non pretentious people Ive ever met. His name is Larry M. And despite facing major open heart surgery in the coming hours , he was more concerned about my predicament than is own. Larry and I have very different views on religion, (not to mention the sexual orientation thing), but in the 2 short days that I got to know him and his family, I now consider them dear friends and I think the feeling is mutual. In a couple of months after Larry heals from his surgery, we plan to do some serious walking together. Maybe we’ll make up the “Heart and Lung” contingent for a future Boston marathon.

I don’t know if it’s the Christmas season or if it’s all the hardcore drugs they have me on, but during this 101st hospitalization for this thing they call asthma, Ive been reminded over and over again just how kind and caring people can be.
To all the people who sent me cards, emails and Facebook comments, thank you SOOOOO MUCH !
I might not get a chance to thank you all personally, but I know who you are and I will never forget your kindness. People whom Ive never even met before have taking the time to reach out. Well, I think that’s pretty great.

As for this current exacerbation, it was a relatively mild one and I was discharged from the hospital today. And and while I’m still very short of breath, I’m holding my own and thankful be home in time for Christmas. So many people aren’t as fortunate.

Now you know I couldn’t end this post without a video clip of some kind, right? But this time instead of posting images of me gorked out on a ventilator or sucking on a neb, I’ll leave you with this corny but totally appropriate snippet of the little doggy Christmas party we had in room 3104. ( I took this with my phone so the quality is not so great, especially with my thumb on the lens half the time.)

Cheers and have a great Christmas everyone!

The OTHER Breathinsteven

Stephen — Fri, 26 Nov 2010 16:29:49 +0000

His human name is Steve Ferkau, and his story is truly amazing.

Healing Walks

Stephen — Tue, 10 Aug 2010 14:33:58 +0000

Carolyn Scott Kortge’s new book is finally out and guess who’s in one of the chapters?

Carolyn contacted me about year ago for this project. She thought I had an interesting story to tell, and that it would fit in nicely with the motivational theme of the book. It’s really cool to finally see the finished work. She did a great job on it.

Healing Walks for Hard Times, maps a path through life’s difficulties with walks that tap the healing power of movement. She demonstrates how walking can restore momentum in lives that have been jolted by illness, cancer, grief, depression or trauma. With a focus on walking for wellness rather than walking strictly for fitness, it offers a path of resiliency in the steps of a familiar exercise.

More than an exercise guide, Healing Walks for Hard Times acknowledges recovery not only as a physical process, but also as an emotional, spiritual and mental journey—-a journey of Survivorship.

Carolyn lays out a progressive, eight-week walking program that encourages readers to get their feet on the ground and move forward, one step at a time. Included are personal stories from survivors of heart disease, cancer, depression, diabetes, chronic pain, natural disaster, and of course severe lung disease, that inspire and reassure. Week by week, walk by walk, readers regain balance and footing on a path that leads to healing, step by step.

Below are a couple of the pages I’m in…….

( Excerpted from HEALING WALKS FOR HARD TIMES by Carolyn Scott Kortge, (c) 2010)
(Published by arrangement with Trumpeter, an imprint of Shambhala Publications, Inc., Boston)
(www.Shambhala.com)

I hope you’ll check it out.

The letter

Stephen — Mon, 31 May 2010 19:06:06 +0000

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.

University of Pittsburgh Newsletter May 2010

Stephen — Wed, 19 May 2010 13:05:46 +0000

( click to view )

WAD 2010

Stephen — Tue, 04 May 2010 13:49:13 +0000

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.

Boston to Big Sur

Stephen — Thu, 29 Apr 2010 14:14:08 +0000

Congrats to two of my favorite running people, Hansi and Francis, for completing the Boston to Big Sur Challenge this past Sunday. These 2 wonderfully nutty people, along with a couple hundred other crazy people, ran BOTH the Boston marathon in Massachusetts AND the Big Sur marathon in California just 6 days apart. Two tough marathons in less than a week on opposite sides of the country. Francis came all the way from Toronto Canada to do these races.

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.

Boston marathon video highlights

Stephen — Wed, 21 Apr 2010 21:35:07 +0000

Rather than bore you with a mile-by-mile account of everything that happened during this entire 7 hour-17 minute very fun but challenging, and at times a excruciatingly painful journey, this year I decided only to post what I can consider to be the highlights. The experience was a little overwhelming and with so many pictures , videos and texts to prepare and post, I’m gonna have to dole them out little by little over the coming days.

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, Jon 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.

I’ll have tons more photos and video clips in upcoming posts….

Racewalk Planet Radio Interview

Stephen — Tue, 20 Apr 2010 19:01:26 +0000

[JP-Facebook-Like]
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.

Bound for Beantown

Stephen — Fri, 16 Apr 2010 23:03:22 +0000

( 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

In good company

Stephen — Mon, 12 Apr 2010 15:16:41 +0000

There might not be very many of us (only 26 this year) and we might not be as sleek as the other runners, but there are some pretty amazing athletes who compete in the Boston marathon’s mobility impaired division.

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 !!

Posts from the Past

Stephen — Mon, 05 Apr 2010 14:27:06 +0000

You may or may or may not have noticed, that I haven’t been updating my blog as often as I have in the past. There are several reasons for this, the main one being is that Ive just been preoccupied with training and preparing for this upcoming race. There are however, other times when I simply don’t have anything new to say and don’t feel like re-hashing old stuff. Everything I write about on this blog is 100% original…it comes out my own head. I don’t use other peoples content or ideas. So except for my 24 hour status updates ,which I try try keep current, when times are slow or when I’m too busy doing other things, I just don’t update as often.

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.

Farewell Jim

Stephen — Sun, 21 Feb 2010 16:08:13 +0000

I just want to take a few moments to honor the life of a good, kind person. His name is Jim Cady. The husband, father and best friend of one of my racewalking buddies, Vickie. Jim was a very kind, soft spoken, but courageous person.

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.

Surrounded by his family who absolutely adored him, Jim passed away on Feb 19th from an extremely rare form of lung cancer.

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.

Till we meet again Jim, addio amico mio!

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

The SARP experience

Stephen — Sun, 22 Nov 2009 18:42:37 +0000

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.)

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Now for the not so good news….

Because this was the first time Id been scoped since early adulthood, it’s really the first time anyone has ever seen the damage that decades of severe exacerbations had caused. What she saw was down there 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.

( here’s a photo taken looking down into my left lower lung lobe)

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.

Closing the loop on Asthma–Sally Wenzel

Stephen — Fri, 06 Nov 2009 14:48:20 +0000

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 more excited I am to meet her and become one of her research subjects.

Here’s the PDF of the magazine that contains the article.
(Scroll down to pg.18)

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?

Solana Beach Racewalking Clinic

Stephen — Tue, 27 Oct 2009 11:20:30 +0000

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

For those who attended the clinic, it was an honor to meet you all. Here’s a link to some of the photos I took. Sorry, I have a slow camera and wasn’t able catch everyone in full-stride.