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:thatthey’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
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.
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.
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 group’s participants had actually undergone 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,so 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. If you 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 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.
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.
(This is what walking 4,000 miles will do to your leg muscles!)
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!
(Look at all this crap I have to wear while I sleep)
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?
