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.

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]

(I just noticed what it says on the pillow)

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 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 someday… instead of walking it!

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

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.

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, 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 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 makes 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.

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.

I rarely ever do these question and answer things , but some of my favorite asthmatics are doing it and it’s for a good cause…. so what the heck.

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