Most recent Milestones:

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

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

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

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

I’M TRAINING FOR A MARATHON ….well actually a half marathon, but it’s so nice to hear those words again. Hard to believe it’s been almost 5 months since Ive done any serious distance walking . To be honest with you, since the Boston marathon back in April, I’ve been in such a rut with all my breathing problems, I wasn’t really sure if Id ever be able to do another race. The fact is, my lung function has declined to an all time low and my endurance level totally sucks . But setting aside my physical limitations and the training obstacles I’ll probably face, mentally, I feel more than ready to take on the challenge of a half marathon again.

For the next 5 weekends , if breathing well enough, I’ll be doing a series of long slow training walks beginning with an 8 miler this Saturday and culminating with a 12 miler sometime towards the end of Sept. In between the LSDs, I’m gonna try to increase the number of 5- mile baseline walks I do to 4 times a week. I hope to also do at least one 10 mile tempo walk sometime before the race. The race itself, happens on Oct 4th at the San Jose Rock&Roll half marathon

Theres no doubt that my disease is catching up with me, as I’m finding it harder and harder to maintain a non-racewalking pace any faster than 15 min/mile over the longer distances, but as long as there are walker friendly events out there that have at least a 3.5 hour time limit for the half marathon and 7.5 for the full marathon, you can pretty much bet I’ll be there doing what I do.

As I mentioned in a previous post, Ive been having a real tough time lately getting any rest at night (don’t we all?) because I sometimes wake up gasping for air. Not sure if it’s my asthma, because the only thing that seems to help when this occurs is to get out of bed and sit straight up. Neb treatments don’t seem to help much.
More than likely it’s another condition they call “ Paroxysmal nocturnal dyspnea” (“PND”) , also known as , believe it or not…Cardiac Asthma. Wouldn’t that be just swell if I had Cardiac asthma on top of Bronchial asthma?

So anyways, tonight they’re doing a sleep study on me to see if they can pin down a cause for this PND, then next week their gonna do an echocardiogram to see what my heart is doing. One of the thoughts, is that my oxygen saturation might be dropping and my CO2 rising when I sleep ( possibly a result of sleep apnea), causing me to wake up gasping for air. I’m not sure I buy the whole sleep apnea and CO2 theory, but it does make sense that since I normally use my accessory muscles to breath while I’m awake, that when I fall asleep and stop using those muscles,that I would start breathing more shallow ,which in turn could then cause my CO2 to rise starting a vicious cycle.
Next week they’re gonna do a Transthoracic Echocardiogram to check my heart valves and to see if my pulmonary hypertension is getting any worse(most COPDers have elevated PA pressures). Congestive heart failure could also be the culprit.

Ive been very resistant to having sleep studies done, because I know that if anything abnormal shows up, they’re gonna want me use CPAP or Bipap when I sleep. YEAH….like that’s ever going to happen! There’s no way I could sleep with that contraption strapped to my face. You’d have to knock me out with sedatives just for me to be able to tolerate it, which would kind of defeat the whole purpose. What’s more, if it turns out that I’m desaturating while I sleep, they’re mostly likely going to want me to sleep with oxygen as well.

Lets see, I already have Oxygen at home, an O2 sat monitor , a PFT machine, a nebulizer system, injectable drugs…and now a bipap machine?
All they need to do now, is give me a ventilator and an intubation tray with a little propofol, and I’ll be able to set up my own ICU right in my own home:-)

OH..one thing that I thought was kinda cool, is that UCSF does their inpatient sleep studies at a local Hotel. Yeah, they actually rent out the entire 5th floor of the Hotel Tomo located in Japan town, because the ward they used to have at the hospital was too noisy due to the garbage trucks coming twice a night. The patients couldn’t get any sleep there. So if you’re so inclined, you could actually spend the day sightseeing SF and then take care of your sleep study business that night:-)

I opted for the home study because I have a really difficult time sleeping in hospitals OR hotels!

Just when I thought I knew everything there was to know about asthma and COPD in general, a couple of my lung docs kindly corrected me on a few misconceptions I had regarding my own lung disease.

Misconception #1 : I always thought that because I have a chronic problem with air trapping and the breathing discomfort that accompanies it, that I surely must have elements of COPD (emphysema) mixed in with my asthma.

Not necessarily. There are several ways that air-trapping can occur. My Pulmonologists believe that my air-trapping is caused primarily by chronic and persistent inflammation of my smaller airways, rather than by structural changes that you would expect to see in a patient with COPD or Emphysema. While it’s true that I have chronic severe asthma and probably have some airway remodeling, my lung doctors believe that my lung disease is still most likely “pure asthma” and not COPD or emphysema which is caused primarily by cigarette smoking.
A major research study on severe asthma completed last year , the SARP study, seems to support that claim. Something else I learned in that regard, is that air-trapping ( the kind you typically see in people with COPD) can be seen on a CT scan of the lungs. My CT scan shows no signs of that type of air-trapping.

Misconception #2 : During times of breathing difficulty, I always thought that I could “feel” the difference as to whether I was air-trapping or having bronchospasm . I just assumed that when I have the sensation of not being able to exhale completely , that what I’m actually experiencing is air trapping ,and when I have the sensation of having difficulty getting air in, that I must be having bronchospasm.

Again, not necessarily. My lung docs were quick to point out that both air -trapping and bronchospasm can cause similar sensations. Whether the narrowing of the airway is caused by the constriction of the smooth muscle that surrounds the airway from the outside, or whether it’s caused from inflammation and swelling from the inside of the airway, the results are the same….The diameter of the airway gets smaller, making it difficult to inhale AND exhale! Both conditions can cause extreme discomfort.

So does this mean I don’t have at least a little bit of COPD superimposed on my asthma? Probably, but in any case , it now appears that the mostly likely beneficial treatment option for me in the future would be Bronchial Thermoplasty and not Endobronchial Valve placement as I originally thought.

PS…..I still think I can “feel” the difference between air trapping and bronchospasm….Ive been tuned into my lungs for a long time.

I thought Las Vegas was fabulous as usual, but apparently my lungs didn’t share the same view, and as a result, I was unable to do the ET race.

I’m not sure if it was the desert climate or being exposed to the smokey environment of the Hotels and Casinos, but by Saturday afternoon I could definitely feel a change in my breathing. My peak flows were dipping below 300 and the stress of doing a midnight race would have probably put me back in the hospital , so I decided to do the smart thing and not do the race.

Of course I’m disappointed that I missed another event because of my breathing, but I think I made a wise decision. And from what I’m hearing from other people who did the race, sounds like I didn’t miss much anyway. They told me that the event was very disorganized this year and that the breakfast at the Lil alien was less than tasty. Hopefully they’ll work out the bugs for next year.

On a positive note, I got to see 3 Barry Manilow shows in a single week! His Saturday night performance at the Hilton was probably the best Ive ever seen him do. The audience consisted mostly of his die hard fans and you could tell he knew it, because he delivered…big time! He was awesome. His voice, his energy, his range and his incredible note sustaining lung power was nothing short of jaw-dropping. Man that guy can write some powerful songs. As a bonus, I managed to get , not one, but two handshakes at this show. I decided in advance that I wouldn’t be taking pictures at these shows, because I end up spending too much time fiddling with the camera, trying to get good shots, that I don’t really get a chance to enjoy show. I have a million photos of the same show anyway.

What was also kind of funny, is that there was a major Star Trek convention going on at the Hilton . The place was crawling with “Trekkies”. from all over the world. Every time I got on the hotel elevator, Id’ run into one of the crew members of the Starship enterprise . These people really get into it.

Next scheduled race for me, is the San Jose Rock & Roll half marathon in San Jose. Next scheduled Manilow concert for me , is Oct 16th at the Arco Arena Sacramento.

Wednesday I have a pulmonary follow up visit at the UCSF chest clinic. What makes this appointment different, other than the fact that I will be breaking in a new Pulmonary fellow, is that we will be discussing some future treatments options, including bronchial Thermoplasty and Endobronchial Valve therapy (EBV) . At the present time, both of these procedures are still considered investigational,but both are in the process of seeking FDA approval . The latter (EBV), has never been done on an asthmatic, but because I have severe air -trapping, similar to that seen in emphysemic patients, it might be an option. I’ll go into more details about these specific treatments options in a future post.

I’m also requesting a referral to be seen at the University of Pittsburgh Asthma Institute in Pittsburgh Pennsylvania . World renowned Pulmonologist and severe asthma researcher, Sally Wenzel who’s part of the SARP team, has agreed to take me on as a patient. Dr Wenzel takes care of some of the most severe asthmatics on the planet and has done some fascinating research in the field. While she may not have much new to offer to my current care plan, there’s a lot that she and her team might be able to learn from me as a research subject, which might then get me in the door for future experimental therapies.

Don’t get me wrong, I have some of the best Pulmonologists in the world taking care of me right here, right now, in San Francisco, but UCSF doesn’t really specialize in the treatment and/or research of the more severe forms of this disease. If you have severe asthma that doesn’t respond to conventional therapies, I think it’s crucial that you seek out alternative treatment options, even if they’re considered risky. Never settle for the status quo. If it turns out that nothing more can be done for me, that’s fine , but at least I’ll know I gave it my best shot…..right?