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?

I can’t believe it . Today I obtained the age of 55, and the official rank of “Senior Citizen”. I guess I should start acting my physical age huh? (That’s a scary thought).

In my wildest dreams I never thought Id be around this long, but 13 marathons and 500 blog posts later…I’m still walkin, bloggin and breathin. I owe a lot to my friends, my readers and my partner Douglas for supporting my crazy endeavorers over the years.

Because I’ve been more fortunate than most people with the severe form of this disease, I’ve decided to give back, by devoting more of my time in the coming months to asthma research and education. In November I’ll be lab-ratting myself for an important severe asthma research study in Pittsburgh Pennsylvania (more about that in the next post). I’m also serving as an Asthma Community Administrator over at Medpedia.com and have become an asthma and fitness health advocate for several other organizations.

On my personal fitness front, I’m finally back on track with my training for the upcoming San Jose Rock&Roll half marathon and will also be attending Daves advanced racewalking clinic next month.

It’s generally been a rough couple of months on the asthma front. This disease has been kicking my butt. Seems like Ive been sick more often than not. A couple weeks ago I started flaring again pretty severely, and as a result, had to up my prednisone to 50mg for a few days. The prednisone did it’s job this time and kept me out of the hospital, but weaning back down was really tough. I always have a difficult time tapering down below 25mg…. my peak flows bottom out and my symptoms come back with a vengeance. I probably wean too fast, but I know my body, and I would rather risk rebounding and breath crumby for a few days, then to stay on the higher doses and suffer the side effect of the prednisone itself.

A few weeks back I had a sleep study and echo-cardiogram done to see if they might shed some light on why I’ve been having such a difficult time with my breathing at night. I’m short of breath pretty much 24/7, but more recently , especially in the evenings and the middle of the night, I sometimes get these really bad bouts of breathlessness that leave me gasping. My lung docs thought that maybe my oxygen saturation was dropping at night or that I was having sleep apneas or maybe even congestive heart failure.
Anyways, I got the results of the sleep study back, and they were totally normal. The results of the echo came back abnormal, indicating some mild to moderate pulmonary hypertension. The other parameters on the echo were normal. Whether the elevated pulmonary artery pressures could be causing my nocturnal dyspnea is still unclear. I have a follow pulmonary visit at the end of the month to see what we’re going to do next. Meanwhile, Ive propped up the head of my bed a few inches, and it seems to have helped a little.

As far as my walking goes, it’s been a challenging and somewhat abbreviated training cycle. I normally like to spend 10-12 weeks training for a half marathon , but it’s been difficult this time because of the all these mini flare-ups Ive been having. It’s just plain difficult to exercise and get motivated when you’re feeling crumby and can’t breath. So far, Ive only spent about one month training for this upcoming race, and as of today I only have 3 weeks left to get prepared. This weekend I’m doing a 12 mile LSD walk, ( the longest walk Ive done since Boston) followed by a 10 mile taper walk the following week. Doing these long slow walks are a critical part of my marathon training ,because they help build and increase my endurance levels. Without them, there’s no way Id be able complete a race greater than 5 miles. The problem of course, is that these longer walks can sometimes aggravate my breathing. The classic asthma catch 22.

Thought my fellow asthmatics might get a kick out of this.

A few days ago I chatting with friend and famous asthma researcher , Dr. Sally Wenzel , and I had mentioned to her how I wasn’t feeling that great , and how I had just upped my pred to 50mg in an attempt to stave off a prison stay. I told her I feared that if the pred didn’t do the trick that Id probably end up in the slammer, but that I would try to hold off from going in as long as possible.

This was her response :

” Grrr. Sorry you are on the high dose pred at the moment! We need to TRY the Qvar in you, for sure. MIGHT limit the bumps (might not, but won’t know until we try). Funny, your words on prison, slammer, not going until you really need to, etc, are SOOOO typical!!!! Sometimes I think you guys must all get together and come up with the lingo. There really is a “severe asthma personality” I think!”

Well fellow asthmatics……. I think the jinx is up ! She’s wise to us …..

Actually…….She’s an awesome Asthma-tologist ! ……. (I just made that one up right now)

Btw…The the evil candy did it’s job and I was able to avoid that incarceration. The trick now, is to wean off that poison without backsliding.

One of the biggest problems of having asthma and living in a 120 year old Victorian house, is trying to keep the dust at bay. It’s not an easy task when you also have 3 indoor cats.. The fur collects everywhere. Now I know what you’re thinking…You’re an asthmatic and you have CATS? While my lungs are extremely sensitive to dust mites and other air-borne allergens, surprisingly, I’m not allergic to cat fur or cat dander, and therefore I choose to keep my furry feline friends. Nevertheless, pets create a lot of dust, so I vacuum frequently and I try to keep them out of my sleeping space.

Here are some of things Ive done to try to reduce the amount of dust in the area of the house in which I spend most of my time.

Earlier this week I participated in an asthma focus group , put on by the AAFA and sponsored by the company who makes the new Bronchial Thermoplasty equipment. I think there were 11 of us in the group, plus 3 silent observers. The severity of disease among the participants ran the gamut from people who had such severe steroid dependent asthma that they could barely speak or move , to those who had only used their inhaler once a month. The age range was 26 to 60. Oddly there were no female participants ( though they tried to get one on the phone during the conference). The entire thing was teleconferenced and lasted about 2 hours.

The first half of the discussion was introductions followed by the usual opener questions like..” How does asthma impact your life? How does it impact your family? How does it make you feel as a person ?”, ” Do feel that current the currently available therapies are adequate?”..”How do you feel about all the medication you have to take and their side effects?”

Though the views expressed by the participants were supposedly unbiased , the outcome of the conference was pretty predictable. You could tell that the moderator was gradually guiding the discussion in the direction of the newly touted breakthrough treatment , called “Bronchial Thermoplasty”.

Three of the groups participants had actually under gone the Thermoplasty procedure during the phase II and phase III clinical trials. During the last 15 minutes of the conference they were allowed to speak. As predicted, they had nothing but good things to say about the treatment.
Comments like… ” It changed my life”….. “It’s a miracle”…. “The best thing that ever happened to me”… “I can play sports again”……that sort of thing. I must say, that after hearing those 1st hand accounts of how this new procedure changed their lives, I was really jazzed up. It made me feel like maybe there was hope for people like me. It was also great to hear that the anticipated FDA target date for approval is for December of this year.

Now back to clearer thinking. If I remember correctly, none of the people in this focus group who had undergone the treatment, had what I would consider, severe asthma. Prior to their Thermoplasty treatments, they were describing mild to moderate symptoms at best. The other thing that kind of puzzled me, is that the clinical trials were blind studies. The research participants were not suppose to know if they received the real thing or placebo, but I’m assuming that they were told of the results once the research was complete.
It would have been nice to hear from other people who had less than miraculous results from the procedure .However, it was good to hear that the side effects of the procedure itself ( which is done via bronchoscopy), were relatively minor for most of the participants.
My general sense is that the purpose for this focus group, was to develop a marketing plan for the device and at the same time, obtain the AAFAs stamp of approval for it.

So while I’m still very excited about this new procedure and how it will help thousands of asthma sufferers, I’m not convinced that it will produce the same miraculous effects for someone like me . In fact, I’m not even sure I will be a candidate for the procedure. Remember , I was turned down for the clinical trials for this procedure because my asthma was considered too severe. Anyone with an FEV1 of less than 65% was excluded from participating . My FEV1 is only 36% now and it doesn’t reverse very much after bronchodialators. I have they call “fixed asthma”, which basically means that my airways have become stiff and permanently narrowed .It’s questionable whether thermoplasty, which targets the bronchial smooth muscle responsible for bronchoconstriction, would be of much benefit.
Then there’s the issue of cost and whether or not the insurance companies will pay for it. I would say, probably not, at least for the first few years. Though if you look at how much the insurance companies currently fork out every time I’m hospitalized, even if this new procedure helped prevent just one hospital stay per year, it would surely be in their best interest to approve it.

If I thought there was even the slightest chance that Thermoplasty could help me breath easier, Id travel to the far reaches of the planet and pay any just about amount to have it done. I guess we’ll just have to see how it goes after this new treatment option gets into full swing next year.