This is it! The countdown to the most amazing clinic you’ve ever attended has begun. In case you haven’t already heard, we will have quite a talent pool, including Sydney Olympic 50k silver medalist Aigars Fadejevs from Latvia, US Olympians Philip Dunn and Tim Seaman; Australian Commonwealth Games and World Cup team member Simone Wolowiec; Swedish IAAF World Cup and World Championships team member Andreas Gustafsson; and Canadian World Cup and World Championships team member Rachel Lavallée and US National Team member Liz Kemp Salvato. A pretty impressive group.

Received this confirmation email regarding this weekends racewalking clinic. Well, that pretty much sealed the deal for me. This is like the Hall of Fame or the Super Bowl of Racewalking clinics. All the heavies are going to be there coaching mere mortals like ME!
A thousand miles of driving or not, bad breathing or not…. I’m not missing out on this one. I’m psyched now!

Just in time for Halloween! Some newly discovered horror show pictures.

Last week while I was clearing out my cell phone, I stumbled upon these eerie photos that my partner Douglas must have taken when I was in the hospital this past June. If you recall, I was intubated for an asthma exacerbation, but had a reaction to the drug propofol, known as propofol infusion syndrome . As a result, they had to stop giving me the drug, which made it difficult to keep me sedated while I was still on the ventilator.

These are some photos of me waking up on the ventilator during that event. You probably can’t tell from the photos, but I had the worst feeling of suffocation imaginable, but at the same time I was so doped up… I couldn’t react to it. It was awful!
When I first saw these pictures, it was kinda like deja vu. Now, they just plain gross me out, so I thought Id share them with my ghoulish asthmatic friends.

Newly discovered Horror pictures

Nothing really interesting going on since I got out of the hospital. Though Ive taken a couple of short slow walks, overall Ive been trying to let my lungs heal as much as possible before jumping back into a physical fitness regimen full time. Been spending a lot of this post hospital recovery time doing non physical activities, including some asthma advocacy and research stuff. Keeping mentally busy, helps me cope with my breathlessness and the not so pleasant symptoms of prednisone withdrawal. The downtime has also allowed me to play catch up on some personal stuff.

Next Friday, Saturday and Sunday will hopefully, be a little more exciting and a little more normal for me. I’m supposed be going down to Solana beach ( near San Diego) for Dave’s advanced racewalking clinic. Ive been really run down lately from the steroid taper and its an awful long drive (450 mile each way), but I’m hoping that I’ll feel well enough by then to go.

If I do go, it will be mainly to hang out with other racewalkers and to meet some of the super stars of the sport. Three time Olympian, Philip Dun and two time Olympian Tim Seaman just to name a few, will be there coaching. Of course Dave Mc Govern , who’s a legend himself, will be running the whole show. My lungs are way too messed up to participate in much of the actual training, but sometimes just watching the elite walkers walk, and/or having my own racewalking form critiqued by them, provides me an adequate level of learning. Most of all though, I go to these weekend clinics because I have a passion for the sport and for the crazy people who engage in it.

In the coming weeks I have a ton of the usual medical appointments, but also a referral to a brand new service called “Symptom Management”. This new clinic is an off-chute of the Palliative care program over at UCSF. I’m going primarily, to see if there are any new therapies or strategies out there that can help me with my worsening dyspnea. To my knowledge, I’ll be the first asthmatic to receive treatment at this new clinic. I’ll be blogging more about the topic of palliative care in a future post.

Sunday was the Nike Womens Marathon. The last few miles of the marathon course passes by my old neighborhood at Ocean Beach in the outer Sunset. I know several people who are doing this years race. I hope they all had a great time!

Sorry, this race report is a little late in coming, but I didn’t want my little prison stint to over shadow all the good things about this race.

First let me say what a pleasure it was to finally meet the famous Miss Dizzy Lizzy and some of the other Mc Govern alumni who trekked in from all over the country to do this race. Talk about a ball of energy, Liz has enough enthusiasm for 100 racewalkers!

Liz and a friend of hers, Elizabeth and myself, all met up at the race Expo on Friday. Inside the Expo building they had this huge banner that actually had Lizzy’s photo on it, that they had captured at this very same Rock&Roll race 2 years ago. Naturally she had to take a picture of herself standing in front of the image of herself…..pretty cool.

We did a once through of the Expo, I didn’t buy anything, but Liz bought a pair of her favorite shoes .After that we all headed over to the hotel coffee shop and chit-chatted for a couple hours. It was great hearing everyones race stories.

On the morning of the race I managed to get to San Jose a little before 6:30 am. I parked over at the HP pavillion arena where there were already hundreds of people beginning to fill the parking lot. Good thing I got there an hour and a half early. From the parking lot, it was a full mile walk to the starting area of race.

This was a much bigger event than I thought it would be. They had something like 12,500 participants doing this race and the streets were filling fast. They had 13 starting corrals extending out about 4 blocks from the actual start line.One thing I noticed right off the bat, was how many Porta potties they had set up. I kid you not, there were hundreds of them lined up side by side , on both sides of the main street and dozens more on the side streets. This is the first event of this size Ive been too , where there were NO lines to use the johns! . At an event this size , you can usually expect to wait 30 minutes to use the toilets. In fact, thats one of the reasons I wanted to get here early. Hats off to the promoters for that one.

At about 15 minutes before the start , Liz called me and we all somehow managed to find each other in this massive crowd. Liz made it easier by wearing her famous “Ears”. After some quick photo taking, we all went over to our respective corrals ( which they packed like sardines) and waited for this huge sea of people to start moving. Once the gun went off, it took about 10 minutes for the runners in the 12th corral to make it across the starting line.

And were OFF….. As always ,I waited till the pack thinned out , which happened pretty fast, and then I pulled over to the left side of the road. I didn’t really have a chance to stretch before the race, so for the first mile or so, my shins were killing me. I knew though, that as I warmed up, the pain would diminish. The next couple of miles would be my warm up mode. This is usually the part of a race where I try to find a comfortable pace and the easiest position on the road itself to walk, usually the center or the crest of the road where its more even. If theres a yellow or white dividing line on the road , I’ll usually hug that line and racewalk right down the middle of it. ( it’s a good way to practice your technique too).

The course itself had a very suburban feel. It was basically flat and meandered in and out of various neighborhoods, most of them tree lined , upscale and very beautiful….Lots of mansions too. I can see now why people pay so much to live here.

Somewhere around the mile and a half mark , I passed Elizabeth. I was going to walk with her for a while, but decided that I needed to bank some time while I still had my lung power. I told her that she would probably pass me up in the last miles of the race. Some how that never happened, and I didn’t see her again until after the race.

It was about mile 2 where we hit the first watering station and thats when it really hits me, of just how long a 13 mile race really is. I would have to pass 6 more of these aid stations before finishing the race. It was also about this time, that I got in the mood to racewalk more and more. With my headphones and music cranked up, I was pretty much oblivious to what was happening around me. The diversion of music also gives me the courage to racewalk in huge crowds without getting too embarrassed. One runner lady who did pass me, tapped me on my shoulder and told me what a nice butt I had , and how she had been been watching my hips for the last 1/2 miles. I just laughed and continued to racewalk. I had seen lots of other walkers on the course swinging there arms, power walking or speed walking (which is not real racewalking), so I felt totally comfortable doing my thing. Mind you, I might not be the best racewalker, but I am a real racewalker. I follow all the rules.

The next 10 miles were actually pretty boring. To break up the monotony I decided I would racewalk the rest of the race. I racewalked on and off as much as I could and even when I would slow to a snails pace to catch my breath, I would try my best to stay in legal form (that’s racewalking lingo for, maintaining technique…ie forward knee locked and one foot on the ground at all times).

Miles 10 through 13 were the toughest. It was starting to get really warm , the sun was shining right in my face and I could actually feel myself overheating. I forced myself to drink both the electrolyte and plain water that was offered at each aid station, but I could still feel my calf muscles and left IT band wanting to spasm and lock up. I was also starting to breath pretty heavily, which is not a good thing for me, because it means that Im gonna be trapping a lot of air in my lungs. The problem with breathing fast, is that I cant exhale fast enough to make room for the next incoming breath. The longer this goes on, the more air that gets trapped in the smaller airways of my lung .Eventually my lungs will blowup like a balloon.
For most of the race I was averaging an inhaler hit about once every half mile, but that increased to about 2 hits every half mile the further into the race I got. In total, I used my puffer about 20 times. It sounds like a lot ..I know, but not unusual for me.

There was nothing really special about the finish line, except that I was very happy to see it. I tried to pace myself through the last 1/10th mile of the race , so that I could racewalk through the finish chute and look good on camera, but I ran out of steam just a few feet short of the finish mat and ended up just walking across it. Oh…well, they didn’t take my finish line photo anyway.

I walked into the finish area, a little disoriented and trying to catch my breath. I got my medal and made my way to the Family reunion area where I spotted Lizzy’s Mouse ears poking up in the distance. She had finished about 10 minutes ahead of me and looked as fresh as she did before the race. I, on the other hand, looked like crap! Anyway, we rested a little and waited for the others to arrive. Elizabeth came in about 15 minutes after I did and looked good as well. Both Lizz’s and the rest of the gang walked with me to pick up my gear bag, we took one last picture as a group, said our goodbyes..and that was it. My 9th half marathon…completed!

Due to a glitch in the electronic timing system, my actually finish time has to be manually verified , which will take a few more days, but I think I finished somewhere between 3:00-3:10, which is much faster than I anticipated. Not a PR for me, not even close, but considering everything, I think it a respectable finish time. I performed well in this race and I’m proud of myself.

Some after thoughts While it’s obvious that pushing myself too hard during this race may have contributed to my asthma exacerbation and hospitalization that followed, I’d like to point out to the naysayers ( the people who criticize my involvement as an asthmatic in these types of events) that out of the 14 races Ive done in 3 years ( 5 of those being full marathons), Ive only gotten sick 2 times as a result of them. Id also like to that say, that even “healthy” people get sick after doing marathons and MANY of them end up in a hospital! I train very hard for every race I do, and if I get sick now and then from over- doing it… big deal. I’m not going to stop doing what I love and what keeps me alive.

Sadly, 2 young runners died during this half marathon. Both collapsed close to the finish line.

A lot of attention is focused on what goes on during a severe asthma exacerbation, but very little about what occurs after. What a lot of people ( and even some physicians ) don’t often realize, is that once the initial asthma crisis is over, the party has only just begun. There’s a perception that once you get past the acute phase of an asthma exacerbation, that your breathing rapidly returns to normal and everything is fine again. Well, that may be true in a very small percentage of asthmatics, but for severe chronic lungers like myself, the reality is much different. No matter how many of these severe exacerbations I go through, (and believe me, Ive been through a lot of them), it’s always the post hospital recovery period that’s the most difficult for me.

When you suffer an asthma attack that is severe enough to warrant hospitalization, once that critical acute phase is over , there’s also a recovery phase that you have to deal with. Though not as dramatic, can nevertheless make you feel just as miserable as the initial attack and can last twice as long!
You just don’t walk out of the hospital after a bad exacerbation and go about your business as if nothing ever happening. A severe asthma exacerbation and all the medications and interventions used to treat it, can reek all kinds of other havoc on your body, leaving you weak and breathless for days and weeks after the initial assault.There’s also an accumulative effect, whereby each subsequent exacerbation takes that much longer to recover from.

The length and severity of this recovery phase varies for everybody. For me, it’s usually determined by how severe the initial attack was, how many days I spent in the hospital,and how many steroids they had me on at the time of discharge. Generally, the longer the hospitalization and the higher the steroid dose, the longer it will take me to fully recover. Age and overall health play a role as well I’m sure.

Of course I’m grateful for the medical care I receive in that big building on the hill, but if you think about it, all they really do for you in the hospital, is stabilize you enough so that hopefully you won’t die. There’s no actual concern about “how you’re feeling” as long as your numbers are survivable. Once you’re over the hump clinically, you’re booted out and basically left to fend for yourself. There are no Nurses, Doctors or Respiratory Therapists to hold your hands or monitor your progress after you leave the hospital (unless of course, you live with one). At best, you might have a follow-up a appointment with your doctor a couple weeks down the road , but by then you’ll probably be back to normal ,which kind of negates the whole purpose of such an appointment.

Still, after going through this a million times, I consider myself lucky. There are some poor souls out there who’s asthma is so severe, that they never fully recover from their exacerbations. They are in a state of perpetual exacerbation and recovery. They are never symptom free. These are the people I feel for the most.

Maybe I’m asking too much, but I really think its important to have some kind of ” immediate” post hospital follow-up care for severe asthmatics. Even a phone call to see how you’re doing would help. Some of the Kaiser hospitals, to their credit, already do this.

Addendum : 4 hours after publishing this post, I actually received a phone call to see how I was doing. Not by the hospital personnel as you would expect, but from an understanding case worker from the insurance company . Needless to say, I was pleasantly surprised. The folks at Brown and Toland have their act together.

I’m not slamming any particular health organization or hospital for the lack of follow up care options for severe asthmatics, I’m just trying to bring attention to the fact, that there is often a prolonged and difficult recovery phase following an asthma hospitalization.
I have a pretty strong support network ( ie..this blog) , but many severe asthmatics don’t.

If this topic interests you, here are a few other posts Ive written in the past.

As far as incarcerations go, this one went pretty smooth and was fairly minor in intensity without any major surprises. Because the ER staff at UCSF know me so well, I didn’t have to spend that much time in the ER and was admitted promptly to the ICU. And because I had the smarts to come in early on in the exacerbation, I managed to avoid intubation…. which also means I suffered less trauma to my body in general. They didn’t have to put any IVs in my feet this time, but they did have to put one in my thumb…ouch!

In total I spent just 2 days in the Intensive Care Unit and day and a half in the step down unit. I was released on good behavior ( and because I’m an RT) Friday afternoon. They know I can take care of myself pretty good at home, so they’re always willing to discharge me sooner than they would with other asthma patients. My PFs on discharge were still in my red zone, but trending upward.

About the only complication I had this time around, was some benign,but really annoying heart palpitations/ectopy ( PVCs) probably caused from all the albuterol. Over a 4 day period, I received a total of 270 mg of Albuterol . To give you an idea of how much Albuterol that is, a single neb treatment contains only 2.5 mg , which means I received the equivalent of about 108 individual neb treatments. I also received 2 grams of Magnesium over 30 minutes ( instead of 1 gram) ,which is something new they’re doing for patients at UCSF with status asthmaticus.

While I was in the ICU they also gave me the (regular) flu shot, which was pretty cool , because now I don’t have to make a separate trip back to the hospital just for that. Because of my hypoxemia,they also wanted to test me for HIV , which I agreed to, and which of course was negative. Also new this time, is that they had Propofol ( the Micheal Jackson drug) listed as one of my allergies on my allergy bracelet, because of the reaction I had to it the last time I was intubated. Unfortunately, most of the alternative sedative drugs don’t work as well as Propofol. Hopefully, I won’t have test that theory anytime soon.

The Nurses I encountered during this 96th hospitalization were incredibly kind and professional. The ICU and TCU nurses in particular were awesome. Thank you Jen RN, Linda RN, Kevin(ICU Nurse Practitioner) and Susan RN , for putting up with me. The RTs were awesome as well. Thanks Oscar and Carl and the others for all your help. It’s tough taking care of someone like me over and over again…I drive everyone crazy. Last , but not least , a special thanks to Norm, one of the hospitals spiritual counselors, for spending time with me and for arranging a laptop to be send to my bed in ICU.. Thanks Norm!

I’m still pretty sick and on a lot of medication, so it may be some time before I can resume my regular fitness and/or blogging activities. Thanks again everyone for your continued support . Also give a shout out to Tammy for taking 1st place in the racewalking division at last weekends Portland Marathon .

PS..As it turns out, no one was really pissed off that I did the Rock&Roll race on Sunday and that it may have contributed to this flare-up. In fact, most of the doctors thought it was pretty cool that I did the race, and if it made me sick?… so what.. was their attitude.

Ive been trying my best to tough this one out at home, but I’m starting to get really tired which is not a good thing. If I end up on a ventilator because I waited too long to come in , I’ll really look like an idiot. So, I’m gonna bite the bullet now, and go in for treatment while I still have a chance for a quick recovery. I’ll be at the following prison…UCSF until further notice.

Had a great time and a stronger than expected finish at yesterday race. My final race results aren’t in yet due to a technical glitch, but I think I finished in about 3:07 , which is much faster than I anticipated and probably why I’m having problems today.

I felt fine immediately after the race, but as I was driving home, I could feel myself getting increasingly tighter and short of breath. By the time I made it home 2 hours later, my peak flows had fallen from 350 to 190 and I was tight as a drum.
I ended up staying awake all last night taking nebs treatments every hour with only minimal relief. Earlier this morning I bumped up my pred to 60mg, but they haven’t kicked in yet, or I’m not reacting to them

My doctor wants me to go to the hospital, but I’m really not in the mood to be tortured right now. I’m sore enough as it is..I can barely walk. I did however, promise her that I’d go in if things didn’t turn around by later today.

Bottom line, I might have exacerbated myself by over-doing it at yesterdays race. I shouldn’t have tried to racewalk the entire 13 mile distance , but I was feeling pretty good at the time and just couldn’t resist. It could have been that I had an exacerbation brewing and didn’t know it ( happens all the time to me). Exerting myself hard for 3 hours my have pushed me over the edge..Who know really knows what the trigger was.

I’ll have a proper race report up in a few days ( if I’m not in the hospital). Hope everyone else did well at their respective races!

PS…Check this out…what an amazing runner!

California’s fastest half-marathon lived up to its billing Sunday as American Meb Keflezighi set a new U.S. 20k record and bettered his personal best by 25 seconds winning the Rock ‘n’ Roll Half Marathon in a time of 1:01:00. Keflezighi’s 20k split of 57:52 broke Ryan Hall’s standing 20K record of 57:54 set in 2006.

In case you didn’t get a chance to read the SARP‘s study on asthma titled “Lung Function in Adults with Stable but Severe asthma”, here’s a postcast where they interview Ronald Sorkness, a physiologist at the University of Wisconsin and the lead author of the study.

Dr Sorkness does a great job of explaining the basics of asthma as well as the research the SARP is doing, in trying to find out what makes the severe form of the disease different from the milder forms. This is the same SARP study that I will be participating in later this year. Listen here

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

Yup, I’m a severe asthmatic and my stress reliever is a cat! How weird is that.

As I eluded to in my last post, Dr. Wenzel along with the folks at the University of Pittsburgh’s Asthma Institute, have taken an interest in my case and have invited me to participate as a research subject in the Severe Asthma Research Program. The SARP is one of the most comprehensive studies of severe asthmatics ever undertaken. My study is scheduled for the 3rd week in November.

The project I’ll be involved in is titled : Inflammation, Myofibroblasts and Loss of Elastic Recoil in Severe Asthma.The Severe Asthma Research Program ( SARP for short), is a collaborative research effort involving 4 different Universities, each adding their own research specialties to the mix. The basic goal of the SARP is to determine what make “severe” asthma different than the moderate of mild forms of the disease. The information they gain by studying people like me, is added to their already extensive asthma database, which is available to lung researchers worldwide.

It’s an exhaustive study, involving several days of testing which includes; full pulmonary function testing and spirometry, allergy testing, spiral CT imaging, blood, sputum and DNA analysis…etc etc. They’re also going to do a bronchoscopy on me to look around inside my lungs and take tissue samples. The only part of the study I’m not too crazy about, is having to spending a night in the hospital following the bronchoscopy. They do this of course, just to be safe and to make sure that my asthma doesn’t worsened after being bronched.

I’m paying for all of my own travel expenses to Pennsylvania, but in return, the research program will be spending 10′s of thousands of dollars in the name of science to see what makes me tick, which I think is pretty cool. And though I probably wont benefit directly from the research, it gives me great satisfaction knowing I can contribute in someway to developing a better understanding of this awful disease.

I think the study is through invitation only, but if anyone out there with severe asthma is interested in volunteering , and can travel to one of the test sites, I’m sure the researchers would appreciate it. Here’s a link to the consent form , which includes many more details of the study.

PS……Remember this one?