Some photos of my recent trip to England. Had a great time and my lungs held out brilliantly. Traveled all over the central and western part of the country from Portsmouth to Liverpool. While in London I had the pleasure of meeting long time blogging friend, Susannah and her husband Julian. How cool is that? Can’t wait to go back to see the half of this wonderful country.

After an estimated 104 hospital admissions for severe asthma and probably 10 times that number of IV sticks, I have no peripheral venous access left. A half a century of IV steroids has rendered my veins useless. The only place they can get lines in, are in my knuckles and toes. So rather than endure hours of torture every time I have to go to the hospital, or risk having a vein blow when its needed the most, we decided it was time to have a VAP Venous Access Port (VAP) put in.

Unlike PICC lines where the ports dangle on the outside of the body, VAPs are implanted under the skin. This protects the port and makes it more comfortable for the patient. Because there are no dressings or anything hanging from your body, you can run, swim or do just about anything you did before. Placement of the device is usually done by a Thoracic or Vascular surgeon under light sedation and takes about an hour.

Mine was placed in my upper chest and is connected to a tube that feeds directly into the subclavian vein underneath my left clavicle. Whenever they need to start an IV on me, they simply pierce the skin over the port area with a special needle, and presto, instant IV access!

Of course there’s always an increased risk of infections with any type of indwelling catheter, so extra precautions have to be taken when accessing the port. They usually have specially trained Nurses who do this. Additionally, the port has to be flushed every 4-6 weeks to prevent it from clogging up. This means a monthly trip to the infusion center at the local hospital, which for me is totally worth the hassle.

Figured I better update my blog before people think I died or something.

Where do I start.

Walking ,I’m happy to report that while my lung function hasn’t been all that great this year, I am indeed still walking. I’m putting in about 22 miles a week, which is actually more than I was doing last year at this time. Unlike in previous years when I was doing all those races, I’m now walking primarily to stay active and in shape. Walking conditions my body in such a way, that makes it easier for me to tolerate my dyspnea. It also affords me the opportunity to get outdoors and to listen to my favorite tunes. Music always sounds better to me when its piped into my ears in high fidelity. Next to my guitar, I think my MP3 player is my favorite toy. I’m not ready to make an official announcement just yet, but there maybe another marathon attempt in my future. Stay tuned.

On the personal health front, I seem to be having more frequent severe exacerbations. Since April, Ive been hospitalized 3 times and had to be intubated during 2 of them. Fortunately, I now have wonderful pulmonologist following my care, which makes the difficult times just a little bit easier to get through. Knowing you have someone who you can call anytime and is there to help you, really makes a difference. I’m also having a VAP, venous access port put in. After 50 years and 104 hospitalizations, I have no veins left. This new port( which is implanted under the skin) will go a long way in stopping the torture I have to go through every time I need to have an IV started. Of course a central line carries it’s own risks, but to me it’s totally worth it.

Music, Well what can I say, except I love it and that it brings me a lot of joy. I wish I could play my guitar all day.
Ive only been playing now for about 4 months, but have regained most of what I had forgotten during my 35 year break. Bass playing styles and techniques have expanded exponentially since I last played. I’m really loving learning all these new methods. My real passion though is traditional jazz and rhythm and blues styles. I love latin and Motown too. Been experimenting with Mixcraft audio mixing software and have created a couple of tunes. ( I’ll post them in the future if you want). I’m hoping to attend one of Victor Wooton’s bass camps next spring. He’s a gifted bassist and a wonderful teacher.

Some traveling in the picture. So next month, if I don’t get sick, I’ll be taking my very first trip to the UK. Ive been to other parts of Europe , especially Italy where I have family, but Ive never been to England. I’m only going to be there for 12 days, but I have a lot crammed into those 12 day. I’ll be staying in both Bath and London and will travel to different areas of the country from those locations. I think England is such a beautiful country and I love the people. This trip has been in the planning stages for almost a year now. I’m getting itchy to go.

Asthma advocacy and support. I’m happy to report that membership and/or readership to both my blog forums and my Facebook SARP group continue to grow. We are creating a real community based on education, compassion and support for those suffering from this disease. Our members include world renowned scientists and physicians, Nurses and RTs , but mostly we have really nice people who have really bad lungs. If you have asthma or have an interest in it, please join us.

Finally, It’s my ( our) favorite time of the year, Autumn. Winston wanted to show off his Halloween costume with his fans.He’s a bit of a ham, like his human counterpart.

Not only did my new Pulmonologist call me at home, but she called at 8:30 in the evening and talked with me for over an hour.

So why am I writing about a silly phone call? Well, in all my years living with this disease I can’t remember a single time when a doctor cared enough to actually call me at home just to see how I was doing. I was so surprised by this call, I really didn’t know how to react. My first thought was that she had bad news to break to me. I mean, when does a doctor call you in the evening, unless it’s bad news, right? Well, it wasn’t like that at all. She was calling to confirm that she had received my earlier message regarding a medication change and just wanted me to know that it was taken care of. Before I knew it though, we ended up in this lengthy and fun conversation about everything and anything. She seemed genuinely interested in what was going on in my life. And because she had called just as I was going to bed, I think she has a better appreciation now of what my breathless nighttime world is really like. I get really short of breath at night and I think she could hear it in my voice.

Btw, this isn’t the first time that she has spent a lot of time with me. My first visit with her lasted over an hour and my 2nd over 2 hours! I even joked with her saying, how do you make any money if you spend 2 hours with each patient?( can’t remember her response). She’s just one of those rare doctors who finds the time. Getting to know her patients, especially her medically complex ones, is very important to her. In addition, she understands that being a good doctor also means being a good listener and following up even on the little things.

I think what I like most about her, is her candidness and her unpretentious laid back approach to medicine. I don’t sense any of that holier than thou attitude that Ive encountered with so many of the other specialists Ive had. She treats me like a VIP, like a friend. The first thing she did when we first met, was give me a hug. Not a handshake, a hug! She told me that she's never had an asthmatic as severe as I was, and that this would be a learning experience for both of us. She knows that I know my disease better than anyone and that her job as my pulmonologist is to be a facilitator and make sure I get the things I need. She’s also totally cool with Dr Wenzel being involved with my care and thinks my marathon walking is amazing. She thinks it’s incredible that I’m able to do the things I do and supports me 100%.

So here’s to my new Pulmonologist. I consider myself lucky to have her, as do I with Dr Wenzel.

(If you’re reading this Dr S, Thanks for taking me on as a patient. It was worth the year wait to see you. I hope I don’t wear you out too fast.)

It’s actually not a new passion, more like the reigniting of an on again, off again love affair Ive had since early childhood. I’m referring of course to the bass guitar, or for that matter any other heavy string instrument.

My introduction into the world of making music actually began at the age of 8. My weapon of choice, the trumpet. Not really sure why I chose that instrument, or if I was even inspired by any of the brass greats of the era, but I know I liked it enough to stick with it for a full 3 years. I actually got pretty good at it too, playing the lead position in the School band and even winning a few competitions. It was a pretty sweet gig, playing my little Al Hirt solos at the school talent shows, but just as I’m getting ready to graduate into the 6th grade, the Beatles happened and everything changed. Suddenly it wasn’t cool to play the trumpet anymore.

Other than the Beach Boys, the Beatles were the first modern rock band I had ever heard who harmonized their vocals. I really didn’t even know what harmony was back then, but when I heard that 3rd Yeah, Yeah..YEAH(a G6th chord btw) on “She loves you yeah yeah yeah”, I was totally hooked! I would find myself searching out keys on the piano trying to recreate those wonderful harmonic combinations, known as chords. I was starting to discover that there were more components to a song than just the melody. There was rhythm and this thing cool thing called bass. Sure, Id seen an Acoustic upright bass before, there was one in our school band, but it wasn’t until I saw Paul McCartney playing that violin shaped electric bass guitar of his, that I knew that this was the instrument I wanted to play.
From that moment on, it seemed like no matter what song I would listen to, my brain would zero in on the bass line. My brain was like a bass filter.

I spent a good part of teenage years in search of my very own bass guitar. We were extremely poor and asking my parents for another instrument was totally out of question. I think I finally managed to obtain one before I turned 18, but it wasn’t until I was 24 or 25 that I actually took my first formal bass lesson. Even though I had messed around and taught myself how to play a quite a few things over the years, I wanted to learn to sight read. I had always admired those studio musicians I worked with during my sound engineering days for their ability to read and play any type of music put in front of them. So I signed up for lessons at the local music store. I already knew how to read the treble clef on the trumpet and the entire musical range on the piano, how hard could it be to learn to play the bass clef on a 4 string instrument? Wow, plenty hard, that’s how hard. Unlike the trumpet or piano, there are several ways to play the same note on a guitar. It took me about a year of lessons before I could sight read even slowly.

I was very self-conscience about jamming with strangers, which is basically what you do when you learn to play the bass at a school, and eventually I just didn’t go to class anymore. For the next couple of years I would keep up with the bass mostly as a hobby, but as time went by and the demands of making a living caught up with me, and I was playing it less and less until eventually I quit all together and sold my guitar. Over the next 3 decades I would occasionally try to start over, but each time I would get frustrated with my progress and quit again. I fell into that trap of believing I was too old to do the things that I really loved and did well when I was in my youth.

Then just this last spring it came to me. I knew my lung disease was getting too severe to do anymore marathons,so why not focus my enormous capacity for learning and my love for a good challenge into something I’m really passionate about, but something that’s less physically demanding. Hmmmmm let’s see, what could that be? Duh, you stupid idiot. How about picking up the bass again??? But will I ever be good at it? Who the heck cares. I don’t plan to make a living from it, I’ll do it because I love the instrument and I love to play.

So here’s to the next chapter. If I can achieve on bass what Ive achieved with my walking, I’ll probably be one heck of a good bass player. Old man or not.

Stay tuned!

Well, after going back and forth with this for almost 2 years, I finally made the switch to a different medical group. Next week I’ll be seeing a Primary care physician as well as a new Pulmonologist. Both are part of the John Muir healthcare network in the eastbay town of Walnut Creek. Should I need hospital care, this is where my new prison cell will probably be. The facility also offers a service called “Care Pages” where inpatients can stay connected with family and friends via their own webpage. The new doctors offices and hospital are located much closer to where I live (15 miles versus 35).

During my last hospitalization at UCSF this past May, Dr Wenzel knowing the frustration I was having in finding a local doctor, put a courtesy call into to a lung specialist whom I had to tried to connect with a year prior, but who at the time wasn’t accepting any new patients. Well, that must have done the trick, because a couple of weeks ago I got a telephone call from this new doctor telling me that she would be more than happy to take me on as a new patient. (Dr Wenzel works her magic again!)

The main reason I’m switching to John Muir health ( or at least trying them out), is because Ive had too difficult a time finding a Pulmonologist who I really clique with over at UCSF. It was also way too difficult to access the pulmonologists when I needed them the most. All of the doctors that I liked were Fellows(doctors in training)who eventually graduated and moved on to bigger and better things. Don’t get me wrong, UCSF is a great hospital to go to if you’re sick, but a great hospital doesn’t do much good if you don’t have a pulmonologist following you on a regular basis.

In the interim, Dr Wenzel has been doing an awesome job of overseeing my care from the other side of the Country( sometimes the other side of the world), but it’s just not practical anymore. Because my disease is so complicated, we both agree that I really need to establish a relationship with a local lung specialist so that I can have better continuity and access. More important to me though, is connecting with someone I actually get along with.

Of course, it’s too early to tell if things are going to work out, but at least for now I have a local Primary care doc and a Pulmonologist who I should be able to get a hold of a little easier if needed. The new Pulmonologist also came highly recommended from friends of mine who are Respiratory Therapists. Hopefully this new alliance will mark the beginning of a new and better chapter in my asthma care…and one with less prison stays:-) If not, the search will continue.

Tonight we had organic chile and beans. Took me all day to slow cook em, but man were they were delicious.

So after eating we go into the kitchen to clean up and guess who’s sitting in the sink with that innocent look on his face. Don’t tell me my cat like chile beans?

Earlier I had filled the pan with water to soak it so it would be easier to clean. Winston must have of got curious and started drinking from it. I hope it doesn’t permanently stain his fur. What am I gonna do with this cat?

The photo is from the movie “Awake” , but what happened to me last September was not fiction. It was the real deal.
I’ll share with you now, what I couldn’t 9 months ago because of pending legal action. Ive since withdrawn my lawsuit against the parties involved and am now free to talk openly about it. I think it’s important that my story be told, as it may comfort others who have been through similar experiences.

Back on Sept 20th of 2010, I was admitted to the hospital for a severe asthma exacerbation(so what else is new). About 8 hours into the exacerbation, my breathing took a turn for the worse and a decision was made to intubate me and put me on a ventilator. No big deal. Ive been intubated many times. They knock you out, stick a breathing down your throat, put you on a ventilator and usually by the time you wake up you’re breathing a little better. That’s what’s supposed to happen, but that’s NOT what happened this time.
For some reason when they knocked me out, I didn’t fall asleep. That’s right, I was awake during the entire intubation and subsequent placement on the ventilator. I felt and heard everything !

How is that possible you say?
Normally when they intubate a bad asthmatic, they use a combination of drugs, one to sedate you so that you fall into a deep sleep and another one that temporarily paralyzes all the muscles in your body to make it easier for them to insert the breathing tube and ventilate your lungs. Well for some reason, the “sedation” part of this intubation drug cocktail didn’t get into my bloodstream, so I never fell asleep. I was paralyzed, but fully AWAKE…..and no one knew it, except me. I was trapped in my body and couldn’t move a muscle to alert anyone.

Words cannot describe what it’s like to be completely paralyzed while having a plastic tube shoved down your wind pipe during the middle of a severe asthma attack… and not be able to react to it! To say it was a living hell, doesn’t do it justice. It was like being buried alive with a thousand pounds of dirt on top of you. I have a huge tolerance for respiratory discomfort, but the feeling of suffocation I felt at that moment was indescribable. You feel like you’re drowning, but can’t move a muscle to save your life. The sense of helplessness and terror you experience is overwhelming, and made a thousand times worse, because you know there are people just inches away from people who could help, but who don’t know there’s even a problem. I tried non-stop with all my might to move my fingers and toes in an attempt to catch someones attention, but to know avail. I could hear and feel everything that was happening to me. I could even see the shadows of people moving around me through my closed eyelids. What seemed like an eternity turned out to be only 22 minutes, but it was the most terrifying and agonizing 22 minutes of my life. There were moments that I pleaded with god to please let me die, so that I could escape the torture. I just wanted my brain to shut off.

And if the horrible feeling of suffocation wasn’t bad enough, there were also the episodes of excruciating pain to deal with. You see it’s standard practice in most ICUs that when a person is intubated and placed on a ventilator, that they also get a Foley catheter ( urinary catheter) inserted into their bladder. Normally not big deal, but for some reason the guy who was trying putting the catheter in me kept encountering resistance or a blockage of some kind. I could heard him talking to another nurse telling her that he was having a hard time getting the catheter in. So to overcome the obstruction he starts FORCING it in! He keeps pushing it harder and harder until it finally passes through whatever obstruction was there. It felt like someone was shoving an an icepick up my urethra.

Simultaneously , I could feel the all too familiar probing of an arterial line needle inside my wrist, as they were apparently trying to insert a second arterial line. They must have inadvertently hit my radial nerve, because all of a sudden it felt like a jolt of electricity split my chest wide open. The pain was so intense I thought I was going to have a heart attack. A few moments later I could hear panic in the voices of the people around people. The alarms on the cardiac monitor were going off and I could feel people brushing against me. and saying things like.. “Something’s wrong!”….”He’s Crashing!”…..” I don’t think he’s Sedated enough!”. Hearing those words I thought to myself, wow..maybe they finally figured that Im awake in here. For a few brief moments I thought this nightmare was coming to an end. I could even sense that I was regaining a little bit of muscle use, because I was able to wiggle my baby toe. I could then hear one of the doctors say…”He needs more sedation!” I thought to myself, they’re finally gonna put me out of my misery. I’ll be going to sleep shortly. ( I found out later that my systolic blood pressure was close to 300)

So then I can feel them injecting some medication into my foot IV, but as they’re pushing the drug into the IV port , I start to feel a burning sensation around the vein. Sure enough, the vein had blown and the medication that was supposed to be going into my vein was going into the surrounding tissue. I’m thinking …Oh my god, they think the medication is going into my bloodstream, but it’s not. They think they are sedating me , but they’re not. I was in so much despair at that point that I was actually crying and screaming with laughter inside my head. Is this some kind of a cruel joke? How could God let anyone be tortured like this. Will this horrible nightmare ever end? I kept thinking that if I actually did die, no one will ever know the hell I went through in the minutes before.

Then mercifully and almost miraculous , I started to feel the paralytic drug loose its effect and I was actually able to wiggle my toes and fingers a little, which caught a nurses attention. I could here the shock in her voice…”He’s awake!” said. A few seconds later I lost conscienceness.

My next memory is of waking up periodically , still intubated and still on the ventilator and trying to alert someone of what had happened earlier. I had been asleep for about 12 hours since the event. The paralytic drug had long sense worn off and I was able to move all of my extremities again, but I still had the breathing tube in, so I couldn’t speak. They knew I was anxious about something because I kept setting off the ventilator alarms and motioning with my hands. Eventually one of the Nurses gave me a pen and paper to communicate with. Well, either they couldn’t read my writing or they thought I was just agitated from being on the ventilator, but for whatever reason I couldn’t get them to understand what I was trying to say. Frustrated, anxious and fearing that they would paralyze me again, I started to pull on my breathing tube, threatening to pull it all the way out. They decided that it would be safer just to extubate me. An hour later, they did just that.

Needless to say I was pretty stressed out. I was still very short of breath from the asthma and the memory of being tortured and buried alive was making my breathing worse. I had my cell phone with me an I was frantically calling and texting everyone I could think of. I just wanted someone to listen to me. I pleaded with everyone who entered my room, to please hear me out….I WAS AWAKE!! I kept saying it over and over again. One of the Nurses who was actually on duty the night I was intubed told me, she thought something was wrong, because my vital signs were going crazy. She also told me that they had a difficult time getting IVs into me and the Foley catheter. I said, I know..I know… I WAS THERE!! She along with others , including a supervising nurse, admitted to me that “mistakes” had been made. ( Documents that I later received, proved these people correct).

Anyway, later that day still angry and not satisfied that none of the doctors would talk to me about what had happened, I began threatening to yank out all of my IV’s, walk out of the hospital against medical advise and sue them for malpractice. Finally ,one of the doctors who was present during my intubation agreed to talk to me about it. Rather than offer any apologies or sympathies for the hell Id been through, she basically blamed the whole situation on the fact that they couldn’t give me the drug they wanted to (propofol,) because they had read in my chart that I was allergic to it. She explained that they had to use less effective sedation drugs like Presidex and Versed and that I probably just dreamt the whole thing. Of course this made me even more furious. I’m not stupid, I told her. I was awake and was even able to recite statements that I heard her say while I was supposedly asleep. Still she insisted it was just a bad dream.

Two days later I was transferred out of the ICU in to the step down unit. Angry, stressed out of my mind, and still reliving the nightmare, they sent a couple psychologists in to evaluate me. They determined that I was suffering from PTDS as a result of the incident and recommended that I seek continued counseling after leaving the hospital. Finally on the morning of my discharge, the hospital administrator and the head of Anesthesiology finally came to my room and offered their apologies. They’re exact words were ” We’re sorry this happened to you”. “This sort of thing is extremely rare, but it does happen”..We’re so sorry”.

It was now the weekend and I was finally home and way from that hell hole, but all the emotional stress of the last few days had caused my asthma to re-flare to the point where I need to be re-hospitalized. Afraid to go back to the same hospital for fear of being intubated again, I went to a different hospital and told them that if I got really bad or if I stopped breathing, that I did not want to be intubated or receive any form of CPR. Fortunately, they got my breathing back under control fairly quickly and after just one day in the ICU and 2 days in the medical ward, I was well enough to go home…again. Before leaving the hospital, I told the doctors what had happened to me at the other hospital. They were very sympathetic, but were also worried that my decision to make myself a DNR ( do not resuscitate) was made based on what had happened to me at the other hospital. They let me know that as tragic and unfortunate as it was, it was just a fluke, a mistake, and not worth making myself a DNR over. I knew they were right and knew I had to seek counseling.

The next couple of weeks were very difficult for me, both mentally and physically. Not only was I suffering from a very severe depression, but my body was still recovering from the asthma itself. I was reliving the nightmare at least 20 times a day, which of course was making my asthma recovery even more difficult. I was starting to withdrawal from people and the activities that I normally like to do. It was like I was in a constant state of road rage. The slightest thing seemed to piss me off.

Finally I got up the courage to seek outside counseling and contacted the psychologist that the inpatient shrinks had recommended. The first few sessions with her were difficult because her office was located only 50 yards from the ICU where the incident occurred. Talking about the incident was even harder, because that meant I had to re-live it again. As the weeks and months went by however, it became easier to talk about it and my PTSD symptoms got easier to live with. She had given me tools to help diffuse the “bomb”, if you will, that would go off on my brain anytime a memory of the event was triggered.

Shortly after I began seeing the shrink, I filed a complaint with hospital itself and also with the State. As expected the hospital’s Patient Relations department investigation findings, showed no wrong doing on the hospitals part. Nevertheless, and knowing that I was severely and psychologically harmed by this event, I contacted a medical malpractice attorney who agreed to take my case.

It took almost 6 months of therapy and a bunch of other distractions in my life ( like my methadone withdrawals adventure and training for the Boston marathon), but finally I was at a point where felt like I wasn’t loosing my mind anymore. The thoughtof ever having to be intubated again for my asthma no longer seem like a death sentence.

I guess I should thank my lucky stars that I was wasn’t having abdominal surgery or something , as I’m sure the outcome would have been much worse. But what I went though still haunts me and despite all the therapy Ive been through, not a single day goes by that I don’t re-live at least small parts of the event. The difference now is that I know when my brain is messing with me and Im better able quash the bad memories before they suck me all the way in.

You have to remember..I’m an RT. Ive worked in and around ICUs for decades. I know what goes on in them. I know that mistakes are sometimes made and sometimes even covered up. All these people had to do was man up. All they had to do was acknowledge that they screwed up, or that a mistake was made and then apologize. Instead, they blamed it on me because of a supposed allergy to Propofol, OR that I just thought that I was awake. I was just as awake then, as I am now. Anesthesia doesn’t always work the way it’s supposed to.

If you’re wondering why I withdrew my lawsuit, there were actually two reasons. The first one was kind of a self preservation thing. I didn’t want to keep reliving the horrible memories, which Ive tried so hard to put behind me. The second reason ( and one I really struggled with) was the notion of punishing people who were actually trying to save my life. It was not their intention to harm me, nevertheless they did. Mistakes were made and I suffered a lot, but I got through it pretty much intact. For what little compensation I would have received from a lawsuit judgement, in the end it just wasn’t worth it to me. Don’t get me wrong, I had a very strong case and legal team and and am very confident that I would have prevailed . But what would I have really gained? I would have never been able to receive care again at an otherwise stellar medical institution. I would have been labeled as someone who like to sue..etc etc. Instead, I elected to take the high road and get on with my life.

In closing Id just like to say to those reading this who have asthma themselves; hopefully you’ll never be in a situation where your asthma gets so bad that you need to be to be intubated and/or mechanically ventilated in the first place. But if you do, don’t let my story freak you out. Though there are always risks involved with any type anesthesia or intubation, the odds of going through what I went through are extremely rare and the benefits will almost always outweigh the risks. Intubation can often mean the difference between life and death for a severe asthmatic. Most people who are at the point of needing an emergent intubation are usually too out of it to realize what’s going on anyway.

Post script…..To show how far Ive come in just 9 months. On May 25th of this year, during yet another severe asthma exacerbation, I faced my fears and went back to the very same hospital for treatment. I ended up in the same ICU and had to be intubated AGAIN. I made it clear to all the doctors taking care of me that I was scared to death because of what had happened to me the last time. This time, everything went smoothly, they put me into a deep sleep and didn’t feel a thing. I didn’t even have a sore throat afterwards, which I usually do.

The next Asthma Support Group teleconference, moderated by Dr Sally Wenzel from the University of Pittsburgh’s Asthma Institute will be held on June 20th at 6pm (EST). If you’d like to participate in this or future meetings, please join my Severe Asthma Support Group on Facebook.

Also check out Kerri’s new Living with asthma chat on Twitter. You can read more about it on her blog.

Ive written about this before, but this is such an important topic; one that effects most chronic lungers and causes more suffering than any other respiratory symptom, that Ive decided to come out of blog retirement to write about it again.

Most of the information that Ive been able to find on the internet regarding air-trapping is way too technical for the average person to understand. Hopefully my explanations will make it a little less confusing. This post will also appear as a topic on my Asthma forum pages for those of you who would like to discuss the issue further.

In a nutshell the term “air-trapping” refers to air that, well … gets trapped in your lungs!
Basically what happens, is that a person with an obstructive lung disease (like asthma), inhales a volume of air, but cannot exhale it easily or completely. The resulting sensation is often perceived as a feeling of chest heaviness or breathlessness. This uncomfortable symptom can vary in intensity from mild to debilitating and usually lasts until the lungs decompress to their baseline state. In the most severe cases, as in severe emphysema, air- trapping tends to get progressively worse and the lungs never fully decompress.

The hallmark of Emphysema, COPD and Severe Asthma, air- trapping occurs when mucus and/or inflammation obstructs the inside of air passages preventing the inhaled air from being easily exhaled. The condition can also occur when the airways themselves loose their elasticity (their ability to recoil) and/ or through the loss of alveolar attachments that stint the alveoli open from the outside. This type of destruction of the airways is seen in both emphysema and in chronic severe asthma (the former usually caused by cigarette smoking).

To get a better understanding of how air becomes trapped in the lungs , it’s helpful to review what goes on during the normal breathing cycle. I think this animation by the folks at Interactive Medical does a superb job of depicting that.

The act of inspiration (the act of inhaling) is an active process. It requires the use of certain muscles (in this case the diaphragm) to make the process work. What happens, is that the diaphragm muscle(which is a dome shaped muscle in your abdomen), contracts and pulls down making room for the lungs to expand within the chest cavity. The expansion of the lungs creates a vacuum within them, allowing air to be drawn in. As the lungs fill with air, stretch receptors tell the brain when equilibrium has been reached and inspiration terminates.

Expiration is (or should be)totally passive. Under normal circumstance there are no muscles used during the act of expiration. The whole system works pretty much like an inflatable balloon. You have “work” to blow up the balloon, but to deflate it, you just let it go and the air escapes by itself. Ah, but if you have swollen airways or thick mucus in them, or if your balloon is made out of cardboard or stiff plastic instead of rubber, it then becomes much harder for that balloon to deflate on it’s own. People who have obstructive lung diseases have to actually work harder to breath, because they have to literally “push” or force the air out of their lungs to make room for the next breath. This requires the use accessory muscles that you wouldn’t normally use to breath, and that extra muscle expends more energy, which makes you more tired and even more short of breath.

It’s important to note, that while air-trapping is abnormal, there is always a small amount of air that remains in the lungs after you exhale completely… even if have totally healthy lungs. This is known as residual volume. Without this residual air, your lungs would collapse into themselves and you would not be able to overcome the resistance required to re-inflate them.

With the exception of drugs like Tiotropium ( Spiriva) or the more radical treatments like LVS surgery or airway stints to treat the more severe forms of air trapping, there are really very few options out there. Certain breathing and relaxation techniques can help minimize the symptoms by basically tricking the brain and reducing the associated anxiety, but the best practice is to prevent the condition from occurring in the first place ,or if it does, by preventing it from getting worse.

This of course is an oversimplification of how and why air trapping occurs, there are different types of air trapping and many other factors involved, but hopefully my explanation gives you a better idea of what’s actually going when you hear the term…”air trapping”

OK, back to my retirement…

Just a quick update on what Ive up too the last couple weeks.

Lungs
I’ve pretty much fully recovered from that last exacerbation and hospital stint. I think the intubation is what caused me to get so sick in the first place. An endotracheal tube is the perfect conduit for introducing bacteria and viruses deep into the lungs. I was coughing up stuff for almost a month, something which is unheard of for me. The intubation also disqualified from participating in the 8 month NIH study in Maryland. The criteria says you have to be intubation free for 6-12 months. Oh well, probably would have got sick from all the air travel back and forth to Maryland.

Thanks to a good word put in by Dr Wenzel, a highly recommended and popular local Pulmonologist, whom it’s been in possible to get an appointment with, has agreed to take me on as a full time patient. I’m gonna give her a try and see if we click. First appt with the new doc is July 20th.

Everything Respiratory Magazine
I’m flattered to have my story featured in this magazine.

Walking
I may not be walking as much as I did prior to Boston, but I’m still walking everyday for an average of 21 miles a week. Ive had to cut back on my 5 mile bridge walks from 5 days to 3 days a week, as my lungs just can’t handle it anymore. In October I’m hoping to a half marathon in Sacramento. I was supposed to do it last year, but I ended up in the slammer that weekend.

Travel
It’s no secret that I love traveling overseas and if my lungs cooperate, I plan to do just that. In November I’ll be spending a couple weeks in England ( which Ive never been too ) and next March I hope to return to Italy to visit friends and family.

Music
For those of you who don’t know, one of my biggest passions and pleasures in life is music. In fact, if wasn’t for music I probably would not have taken up walking. I can’t tell you important my Mp3 player was in getting me to Boston.

As a young child I played the trumpet and actually became pretty good at it, even won a couple of talent shows. When the Beatles came out, I switched to piano and eventually to acoustic bass and finally bass guitar. In my early 20′s I became so fascinated with audio production that I my put my RT career on hold and got a job in a prominent recording studio in south Florida. I started by working as a roadie for local mobile sound production company and worked my way up to recording engineer and music producer. Unfortunately, that lifestyle ( at least in the early 80′s) wasn’t very conducive to good lung health, so after a couple of years I ended up going back to Respiratory therapy. Well, here it is 30 years later and I’m going back to what I really love, playing the bass.

I purchased a couple vintage Spector basses, one 4 a stinger and one a 5 stringer. The instruments themselves are like little works of art . Almost as fun to look at as they are to play. Of course it’s been a quarter of a century since Ive had a guitar in my hand, but modern technology has made it much easier to get back on track with all the cool digital tools that are available now. Being old school can have it’s advantages too, because early on I learned to read music…a rarity among bassists. No, I’m not going to join a band or anything like that. I play for the joy of playing learning and having fun.

On Location
For the last few days, the town of Crockett has been inundated with huge Movie production trucks and personal. They’re actually filming right across the street from my house right now. They’re are lots of vintage 1930′s cars and props lining the neighborhoods streets and tons production people milling around. It’s a movie by Paul Thomas Anderson (who did Boogie Nights and Magnolia and a bunch of other hits) The story is about a man who returns after witnessing the horrors of WWII and tries to rediscover who he is in post-war America. Philip Seymour Hoffman plays the lead character. Oh…and I didn’t recognize him at first, but Joaquin Phoenix who is also in the movie, walked right past me (still in character) and say’s… how’s it going? . Pretty cool!

Well, that’s the latest. Hope everyone is staying reasonably healthy and enjoying their summer.

Cheers!

This is probably one of the hardest posts Ive ever had to write, so I’ll just cut to the chase. After 6 full years and nearly 600 posts, it’s time to call it a day. It’s been a great ride and proving people wrong along the way has made it even better.

I promised myself when I started this blog that if it ever I got to the point where I was repeating myself, that I would call it quits. Well, I think that time has come. This blog was never meant to be a platform in which to whine about my asthma or to chronicle my life with this disease to the very end. I created it to prove to others, that given enough encouragement , determination and/or just sheer willpower, that a person with a severe breathing problems could accomplish just about anything they set their mind to. My goal back then was to simply to get in good enough shape to walk around the block a few times without keeling over. 6 years ago if you would of told me that racewalking would become an all consuming passion of mine, or that one day Id walk the Boston marathon, I would have thought you had a screw loose. Never in my wildest dreams did I ever imagine I would finish a single marathon, let alone 8 of them.

So, to the thousands of visitors, wonderful fans and faithful friends, I wanna thank you from the bottom of my heart for sharing this incredible journey with me. Let’s keep the dream alive of a day where asthma no longer causes suffering and despair. Please do whatever you can to educate and get involved.

As for the future of this website, I intend to keep it up running as an archive of my experiences and will continue to participate in the message forums from time to time, but will not be updating the blog portion on a regular basis anymore. I hope you’ll check out my Severe Asthma Group on Facebook.

As for my own future, I have a million other passions I wanna pursue while I’m still able, including some traveling. I’m not sure if I’ll be doing anymore marathons(though I qualified again for Boston in 2012), but rest assured I’ll be out there pounding the pavement every chance I get and will also continue to be a vocal advocate for asthma related issues.

Thank for tuning in:-)
Stephen Gaudet

The idea for this post came to me during the middle a recent severe exacerbation. Actually, it was the same exacerbation that put me in the hospital for 12 days, for which I am still recovering.

Foremost on my mind during one of these really bad flares is the question….how bad will it get? Is this exacerbation going to escalate to the point where I need hospital care? If I don’t go in, will this be the one that kills me? After all, 5,000 people in this country still die every year from asthma. Many of them before they get to a hospital.

Like many severe asthmatics, I tend to downplay or ignore the severity of my symptoms for as long as possible, because I know what’s in store for me if I end up in the hospital. But in doing so, am I playing asthma Russian roulette? Should I go in at the first sign of trouble, or should I try to tough it out and hope it gets better on it’s own?

Assuming that the flare isn’t too severe and that Ive already followed the general recommendations in my action plan (which only exists in my head), I will usually try to use objective criteria, such as my peak flows, FEV1s and sats, as well subjective observations, such as my dyspnea level, to try and assess whether I need a higher level of treatment and monitoring. I say monitoring, because that’s essentially all that happens when you go to hospital to be treated for asthma. Most of the drugs they give you in the hospital are the same exact ones you take at home, only in higher concentrations.

The main benefit of being in the hospital during a severe flare is that you have Doctors, Nurses and RTs in close proximity if things get out of control, which they can easily do with asthma. If you’re sick enough where you actually need to be admitted to the hospital and are at high risk for death and might need to be intubated, they’ll usually put you in the intensive care unit where they can keep a close eye out on you. Generally though if you’re stable and breathing on your own, they’ll usually put you in a regular hospital room and check on you every few hours, not much different than being at home with a caregiver. Of course as an inpatient in the hospital, they can also perform diagnostic tests, give you IV meds, etc, but the hospital’s basic function for asthmatics is to monitor you until you’re over the hump. Your asthma flare is going to break when its darn good and ready, and nothing the Doctors, Nurses or “Hospital” can do is going to make that happen any faster. Most of the time your asthma flare won’t burn itself out until you’ve already been discharged from the hospital.

There are really no rules are guidelines to tell you if you should go to the ER for your asthma. And though an action plan can be helpful, I think most people rely on their gut feeling to make that decision.

So, what criteria do YOU use to determine if, or when, you should go to the hospital ? And how high do you set the proverbial ER bar? Do you wait until you’re at the brink of respiratory failure, or do you go in at the first sign of trouble? And how about asthmatic children? How do you know when it’s time to take them in?

Oh wait, I just remembered that I’m also an RT. I guess I better offer my professional two sense on the subject: I think the vast majority of acute asthma flares can probably be treated safely and effectively at home as long as you keep a close eye on your symptoms and follow your action plan. However, if you have a history of severe asthma or have been intubated in the past, Id say don’t mess around and get your your butt to the hospital pronto! As far as children go, they can’t cant speak for themselves, so by all means take them in right away if their symptoms don’t improve.

Greetings from the 14th floor isolation room a top the Moffitt building at UCSF medical center in San Francisco. Your guest host for tonight’s show is..well, me of course. I’ll be discussing how much fun it is being a patient in the hospital with severe asthma.

Just happy to be alive, I was hoping to broadcast live from my hospital bed last Saturday night, but I was too sick. In case you hadn’t heard, your favorite middle-aged marathon walker managed to rack up his 104th trip to the slammer and his 18th intubation for asthma. You heard right.. 18 intubations!! (we’re talking science fiction stuff here). Anyway, I must have been really sick, because it took me 4 whole days to get online and get word out about what was happening to me.

To hear the ICU doctors tell the story, it was my participation in the Boston marathon that did me in. The first thing that many of them said when introducing themselves to me was… Is it true you did the Boston marathon? (Most of them thought it was pretty cool). One of the residents had even read my blog and remembered me from an earlier hospitalization.
The fact is, I was breathing really well the day I left Boston and a full 5 days before going to the hospital. The marathon may have caused some major leg pain and body pain, but it didn’t cause my breathing to spiral out of control. What did me in was a nasty bug that decided to invade my chest, which I probably caught on the flight back from Boston. I knew I was in trouble that Sunday when it turned into bronchitis. With me, chest colds and asthma can be a deadly combination.
Knowing that any delay in seeking treatment would only make things worse, I only fought the attack for 2 days before hightailing it to the slammer, for which I was incarcerated for 12 days. A rather lengthy stay… even for me.

Not wanting to worry about leaving my car in the parking lot or on the street, I decided to take BART and Muni from my home in Crockett,Ca to the hospital in SF. I wasn’t in a lot of distress at the time, so I figured taking public transit wouldn’t be a big deal. As always though, I misjudged just how sick I was and by the time I completed the 90 minute trip to the hospital I was definitely in trouble.

I checked in at the triage desk in the ER and only had to wait about 10 minutes to be seen. It wasn’t really until the triage nurse was working me up that I realized just how sick I was. My sats on room air were only 84% ( they were 92% when I left the house) and my BP was through the roof at 220/114. I thought..oh shit here we go again. I could actually die from this freakin flare.
From the triage area the Nurse downgraded my condition to serious and put me in the cardiac resuscitation room (you know you’re sick when they put you in that room). A million people came rushing in trying to jab needles in me and place those sticky monitor leads all over. They began the usual protocol cont nebs, mag sulfate, steroid bulus, chest xrays, blood work, etc. Took em about 20 minutes to get an IV in me and get ABGs. After about an hour in the ER, the ICU staff came down and evaluated me. Because of my notorious history, they decided it would be safer to monitor me in the ICU.

I arrived at the 13th floor ICU sometime around 10 pm. Early blood gas results had shown that I was starting to retain CO2, so in addition to the 20mg/hr of cont albuterol and a huge bolus of prednisone they decided to put me on Bipap. After 2 hours on Bipap they rechecked my gases, but my CO2 was still climbing. At that point they decided that since I would be requiring frequent ABGs, that it would be better to insert an Arterial line, which they did. It was shortly after that that I remember them saying that my gases were getting worse and that I needed to be put on a ventilator. Reluctantly, I agreed and 20 minutes later I was out for the count.

The next thing I remember is waking up on the ventilator choking on the ET tube. Shortly after that I was breathing on my own and extubated. Total time elapsed from intubation to extubation was appx 21 hours( a fast turn around for me). I found out later that the reason they extubated me so soon, was because I had pulled out my A-line (a potential catastrophic situation) and had also threatened to self extubate ( pull the breathing tube out). Of course, I don’t remember doing any of this, but I did find it odd that my wrists were tied when I woke up. I also found an IV in my foot and another in my shin! Not mention a Foley catheter and and an NG tube in my stomach. Too many freakin tubes and wires!!

I spent the remainder of the day in ICU where things were starting to look up. While there they set me up with a PCA, so I could self-administer Dilaudid whenever I got short of breath. ( yes, I use opiates to quell my breathlessness)

Ah, but that expectation was shortly lived. Just hours before my planned discharge , I started wheezing and coughing uncontrollably. It was as if I was experiencing some massive allergen exposure to something in the air. It was bizarre. My nose became plugged up and then started dripping like faucet wide open. My lung sounds went from clear to sounding like a washing machine during the wash cycle. You could here me wheezing from down the hall. I somehow managed to pick up ANOTHER freakin virus right there in the hospital. Once it got in my chest, that was it, I couldn’t breath again. It was like the asthma attack was starting all over again. Not knowing what kind of virus they were dealing with, they moved me to a private isolation put me back on high dose continuous nebs and bumped up my pred to 120 mgs . I stayed on the continuous nebs for almost 4 days before the attack started to ease. Finally, 12 days after the initial attacked started I had met all the criteria they had set for discharge and was allowed to go home.

During the 12 days I spent in the slammer, I lost 11 pounds. I was so dehydrated that they skin on my toes was dried up and was peeling off.As far as battle scars go, I counted 66 holes in my arms and legs and of course that wonderful black and blue bruising you get from all those Lovenox injections in your stomach. Amazingly, I don’t have a sore throat from the intubation.

The first couple of days at home have been rough. Yesterday I was so short of breath I thought I was gonna die. My FEV1 had dropped to 22% ( .65 liters) The lowest its ever been. Part of the problem is that I was discharged from the hospital on high doses of pred ( 100mg) and sometimes this can actually have a reverse effect on my breathing. Today I’m down to 90mg and plan to wean by 10 mg per day till I get down to 50 mg and then slow the taper from there. Considering the trauma that my body has been through ( again) , I think Im doing pretty good. I think the training for that marathon helped me get through this better than most people would.

Spending time in the slammer is never fun, but all the Doctors , Nurses and RTs I encountered this time around were awesome… many remembered me from previous admissions. Dr Wenzel of course was a big help as was one of the attending physicians Dr Thompson who put in a good word for me to a local pulmonologist Ive been trying to hook up with.

Most important though, I wanna thank all my friends for the their love and support. I received over 200 emails and letters, not to mention some real artwork. Thanks Kerri and Sara M.

They don’t call it the best marathon in the world for nothing , and this year was no exception. The weather was near perfect and the spectators and volunteers outdid themselves.

The moment I entered athletes village and the disabled athletes staging area early Monday morning, my worries and stress about the race just melted away. I felt so privileged just to be part of all this for a 3rd time. This year there were only 12 of us in the mobility impaired division. It’s kinda like an exclusive club where the members get together once a year to show the world what they have accomplished.

Here’s some various scenes I captured before and during the first few miles of the race. I think they speak for themselves..

Strategy– Because I feared I would have problems with my left foot if I tried to racewalk the course, I decided at the last minute to keep my pace up by doing a combination of regular fast walking mixed with some very slow jogging. I would the walk the hills and jog the downhills and sometimes the flat areas. I tried my best to walk on the inside corners of the all curves, but sometimes it was difficult because of all the people on the course. The farthest I was able to jog at any one time (because of my breathing), was about 50 yards. For the most part the strategy was working and I was able to maintain a pretty constant 14:30-15:00 pace for most of the first 20kms. By mile 15 though, the jogging intervals were making me way too short of breath and I had to cut back. By mile 18 I was getting so short of breath, I couldn’t jog at all. I was using my inhaler and neb machine way too much, and my leg muscles were starting to cramp. I thought it best at that point to stick to plain old walking (on Heartbreak hill, even the runners were walking so I didn’t feel that bad). So anyways, I’m tooling along at a much slower pace now just trying to survive the hills (which never seem to end), when I figured I better hit the next pit stop, as my stomach was getting a little iffy. That’s when every thing changed!

The Curse —As I’m stepping out the porta potty at mile 21, I take about 3 steps forward back onto the course, when all of a sudden my left knee decides to totally give out. I mean boom… it just went limp and buckled. As I’m trying to keep myself upright, my “good” leg then decides to lock up on me. I then somehow manage to simultaneously slip on a paper cup and fly face first toward the pavement. I was able to brake the fall with my fingers and forearm, but as I hit the ground and rolled onto my back, both of my legs cramped up and I couldn’t move. (We’re talking full calve and quadriceps cramps…) There’s blood everywhere and my lower body is spasming…what a spectacle. Thankfully, some very cool, but slightly inebriated college students came to my rescue and helped me work the cramps out and made sure I was OK. By then however, the damage was done. I knew the moment I tried to stand up and put weight on my left leg, that my hopes for setting a new a PR went down the toilet. After limping a few yards on it, I was having serious doubts as to whether Id be able to finish the race at all. I was so devastated I just wanted to cry. Why did this have to happen? At that point I was experiencing so many emotions, my brain kinda shut down. I went into survival mode and decided that PR or not, there was no way I was going to quit after making it 21 miles.

The last 5 Miles —Every mile seemed like an eternity. The pain was so excruciating that I was actually moaning and grunting, but I knew that if I stopped, even for a moment, that my body would totally cramp up and that would be it. Frustrated as well, I think I was starting to make Jon ( my spotter) nervous. Here I am limping, blood dripping down my leg, I’m breathing really hard and we still have several miles to go, yet he totally gets how important it is for me to at least finish the race and he continues to encourage me. Heck, even the police, which were everywhere and could obviously see me limping and grimacing in pain, were acknowledging by their facial expressions that it was OK and not to give up …they cheered me on as well. Had this been any other race, I probably would have forced off the course. Anyway, as it turns out, I had made such good time during the previous 20 miles, that even with the injury and the subsequent slow down, I still managed to finish 12 minutes faster than last year.

Lessons learned–I put everything I had into this race and was on track for a 6:45 finish. Then wham…to have this happen just 5 miles from the finish was really disappointing. I guess I could blame it on having the worst luck in the world, but in reality what happened at mile 21 was just a freak accident made worse by some poor judgement on my part. You see, while bolusing with prednisone prior to a race can sometimes keep a post race asthma flare from escalating out of control, it can also cause some wicked muscle cramps. Add to that a group of muscles that are already over-worked from 6 hours of constant pounding, and you have a marathon disaster just waiting to happen. The bottom line, is that I didn’t stretch or hydrate enough, and most importantly, I didn’t do ANY speed training. You can’t train at a slow pace and then expect to race at a fast one. If you wanna be a fast walker, you have to train as a fast walker. But of course, therein lies the catch 22. In order to do any physical activity fast you have to have good lungs. There’s got to be a happy middle in there somewhere.

Final thoughts –My hard luck story isn’t really unique. There were a lot of injuries that day and a lot of suffering going on ( you should have seen all the people who were limping through the airport when I left, it was almost comical.) Race officials later told me that they had never seen so many leg, knee and calve injuries. Weird huh?
Anyways, 72 hours later and different perspective, I’m now feeling a lot less sorry for myself or my race results. I may have lost 20 or 30 minutes with my little acrobatic stunt, but the fact that I was able to continue on despite my breathing, despite some significant injuries and despite some excruciating pain, proves once again ,that while I might be the slowest person on the course, I still am one tough cookie. My spotter Jon who works with lots of professional athletes, made these remarks…..he said “Steve, if it were easy, everybody with severe lung disease would do it. You are truly one of the great athletes that raced on Monday!” I can’t tell you how much that meant to me. Thank you Jon for tolerating me for 7 hours ( his neck was so sore from being on that bike all day) and Thank you to all my cheer-leading buddies for supporting me though my 8th marathon.

Speaking of race photos, almost forgot….A fellow Dave Alumnus and marathoner whom I had never met, heard that I was in the race and snapped this finish photo of me as I limped across the finish pad ( and later collapsed). Thanks Mary Ann!
(The rest of my race photos are so disturbing, I’m not even gonna buy them this year)

[Post Script] After being evaluated back home, turns out I tore a ligament near my knee and pulled 2 of the quad muscles in my left leg.Walking 5 miles with this injury probably didn’t help matters. They’ll have a better idea of the damage after they do an MRI , but hopefully I’ll be good as new in a few weeks and won’t need surgery.

]]> http://breathinstephen.com/boston-2011-race-report/feed/ 17 http://breathinstephen.com/disappointed-but-still-finished-faster-than-last-year/ http://breathinstephen.com/disappointed-but-still-finished-faster-than-last-year/#comments Tue, 19 Apr 2011 01:01:20 +0000 Stephen http://breathinstephen.com/?p=19584

I was on well on my way to setting a personal best, when at mile 21, I slipped on some wet paper cups, did a full summer salt, cut my finger open and tore a ligament in my knee. It took me almost 2 hours in excruciating pain to limp the last 5 miles of the race , but at least I finished. Jon Robertson my spotter ( bless his heart), bent the rules a little and stayed with me on the course right through the finish chute. In the end, despite the time I lost as a result of my little acrobatic maneuver, I still managed to finish the race 12 min faster than last year.

Hey, it wasn’t all bad. The spectators really out did themselves this year. Imagine experiencing this scene for 7 hours. My hands are raw from from having them high5′d so many times.

Thank you everyone for your support and well wishes. I’ll have a more complete race report up in a few days.

PS….Thank you Kerri, I just saw my Facebook Fan page. Naughty naughty..:-)

PPS…It was nice meeting you Chris and Laura!

]]> http://breathinstephen.com/disappointed-but-still-finished-faster-than-last-year/feed/ 18 http://breathinstephen.com/boston-or-bust/ http://breathinstephen.com/boston-or-bust/#comments Thu, 14 Apr 2011 15:57:54 +0000 Stephen http://breathinstephen.com/?p=18802

So in just a few hours Bib# 21619 is off to the Boston area to take another stab at the mother of all foot races. Monday morning I will attempt to finish my 3rd Boston marathon in a row and my 8th full marathon since starting this incredible fitness journey 5 years ago.

May not sound like a big deal to walk a marathon,but put in perspective; only 1% of the population will ever walk or run a marathon in their lifetime, and most of those people will be totally healthy. The number of people who have completed 7 or more marathons is astronomically small. So, even if I don’t finish the race this year, I’m still ahead of the game.

Btw, Y’all know that the Boston marathon doesn’t actually start in Boston, right? It finishes in Boston, but it actually starts 26.2 miles away in a quaint little New England town called Hopkinton. For the last 115 years on Patriots day, the towns’ population explodes with tens of thousands of some of the fastest runners in the world as they gather at athletes village to make their way to Boston. Some will finish the 26.2 mile course in less than 2 and a quarter hours.

[Enlarge this photo to the max..it's wonderful]

And then there’s me……..
In 2010 , I became the last official finisher to cross the finish line. Out of the 22,672 people who completed the race, I came in dead last! In other words, I finished up in 22,672nd place.
Don’t ya just love it!

But regardless of how the race turns out, I probably wouldn’t be here at all if weren’t for the help of some generous and caring individuals. So let me take this opportunity to thank in advance, the officials at the BAA and my support crew, affectionately known as Team Wheezy . Helping me out again this year are Tom of Caire Inc, plusJon and Chris from the BAA. Jon and Chris will be spotting for me on bike and Tom will be providing logistical support on the course as well as transportation to and from the event. As a disabled athlete, I’m also allowed to have someone accompany me on the course, but this year I will be doing the race alone.

I also wanna thank some of the folks that contributed behind the scenes…. The wonderful folks at the Runningwarehouse for providing me with the shoes I’ll be wearing during the race, the very generous people at Rabbitair for providing me with clean air in my home, so that I could stay healthy while trained for the race, the Sony corporation for providing me with a bunch of their portable music players, which came in handy during those long training walks, to and to Microlife for providing me with the state of the art peak flow meters. Last, but not least, my Pulmonologist and dear friend, Sally Wenzel for supporting my fitness endeavors, no matter how extreme they might me.

While in Boston for the marathon, I’m also going to be participating in a medical study for runners over the age of 40 who take statin drugs (statin drugs are used to treat high cholesterol). The study is titled “The effects of chronic statin therapy on markers of skeletal and cardiac muscle damage in Marathon runners”.
They’ll be drawing my blood before and after the race and then a 3rd time 24 hrs later. After the study is complete, they’ll send me a detailed report of my lab results, including Lipid Panel, Liver Function Test, Muscle Myoglobin, CK Isoenzymes, Hemoglobin and Hematocrit and Cardiac Troponins. It’s basically a bunch of tests I need done anyway, so might as well contribute to science and get paid at the same time ($100 if you complete the study):-)

As far as the lungs go, I’ll pre-medicate with the usual bronchodilators. I’ll also have my portable neb with me on the course, along with a couple of epipens and a pocketful of inhalers. The riskiest time for me is usually not during the race, but afterward. The symptoms I experience in the hours immediately preceding the race will dictate how severe the flare will be. There’s really no way for me to stop or prevent a flare from occurring after exerting myself to this extent, but to increase my chances of keeping the flare at manageable levels, I’ll up pred to 50 mg the day before the race and then rapidly taper.

Depending how the day goes, I’ll try to post or tweet. If you’re dying to know how I’m doing, you can follow my progress via the AT&T athlete program. My bib# is 21619 (Not sure it will work if you live outside the US)

Good luck to the other 27,000 people participating in this historic marathon event!

]]> http://breathinstephen.com/boston-or-bust/feed/ 11 http://breathinstephen.com/training-complete/ http://breathinstephen.com/training-complete/#comments Fri, 08 Apr 2011 15:14:15 +0000 Stephen http://breathinstephen.com/?p=18961

Taking a short break during an 18 miler on the Golden Gate bridge to mug for the camera.

Rather than rehash what Ive already been documenting on Dailymile for the last 4 months, I’ll just cut to the chase. I’ve successfully completed ALL of my training for my 3rd Boston marathon, BUT I’m not feeling very confident that I will actually finish the race this time.

While I’m definitely in much better shape (both physically and mentally) than I was 14 weeks ago and certainly capable of completing another marathon, my right foot is probably going to prevent that from happening this time around. I have a pretty nasty metatarsalgia in the ball of my right foot (inflammation of the 2nd metatarsal head), which has been bothering me a lot during my training walks. The pain generally kicks in after a few miles and gets gradually worse the farther I go. If the 21 miler I did a few weeks ago is any indication how my foot will hold up during a full marathon, it’s a sure bet I won’t finish the race.

Still, I have no plans to withdraw or cancel my trip to Boston. My lungs have been doing great the past week and I have way too much pain and sweat invested in this to back out before I even make it to the starting line. I may not be able to finish the entire race, but I plan to be there in Hopkinton with my friends on Patriots day and will complete as much of the 26.2 mile course as I can.
To increase my odds of success, I’ll be in total rest mode starting today until race day, which is 10 days from now. Who knows, maybe that will be enough time for my foot to at least partially heal.

Without even touching on the breathing or asthma implications in all this, training to run or walk a marathon is hard, and the older you get, the harder it becomes. This is a risky business and no matter how many precautions you take, s**t happens. The body wasn’t designed to withstand the constant and grueling pounding of pavement with an impact force of twice your body weight. Eventually it’s gonna catch up with you. When that happens, you can either give up and call it quits, or you can pick yourself up, make some adjustments, and continue on. I think the fact that I’ve come as far as I have, considering the obstacles I face, is because I believe in myself 100% and I’m truly passionate about everything I get involved in. I may not be a natural born athlete, but how many people do you know with severe lung disease that have completed 7 full marathons, including the Boston marathon, not once, but twice! And all within a 5 year span.

So yeah, I’m proud of myself for making it this far. If it turns out I finish the race…great! If not, no big deal.

That truly is one beautiful bridge

]]> http://breathinstephen.com/training-complete/feed/ 15 http://breathinstephen.com/lunch-with-sally/ http://breathinstephen.com/lunch-with-sally/#comments Sat, 02 Apr 2011 22:07:20 +0000 Stephen http://breathinstephen.com/?p=19257

Had the great fortune of having lunch last week with one of my most favorite people in the whole world. Dr Wenzel was in town for the annual AAAAI convention in San Francisco and managed to squeeze in some private time with me in between her busy presentation schedule.

Although we keep in close contact via email, this is only the 3rd time we’ve had a face to face. It was so good to see her again. I love her to pieces (and I think the feeling is mutual). Ive never met a person, especially a physician, who has such a passion for severe asthma and the people who live with the disease everyday. She works tirelessly traveling all over the world trying to change peoples perception about severe asthma and to find better treatments for the most severe forms of the disease.

Among a million other things, we discussed the need for forming a grass roots national asthma advocacy and/or support organization geared for patients, as none currently exists. She can’t get involved directly herself because of her research interests, but she would be there to support such an effort in other ways. She also asked me if I would be interested in becoming a patient spokesperson for theNIH’s asthma research programs. I think I told her yes. The topic also came up about conducting a quarterly tele/cyber asthma support group which would be organized through the University of Pittsburgh’s asthma institute. I think it’s a wonderful idea.

The next time we meet up, will be in Pittsburgh. I’m scheduled to return there this summer for a SARP follow up ( and maybe a half marathon…..hehe)

Did I mention how much I love this women?

Oh yes, and word has it that SARP 3 is going to be funded!!! …YAH the research continues!

]]> http://breathinstephen.com/lunch-with-sally/feed/ 7 http://breathinstephen.com/lets-talk-asthma/ http://breathinstephen.com/lets-talk-asthma/#comments Tue, 29 Mar 2011 15:00:32 +0000 Stephen http://breathinstephen.com/?p=19265

To offer broader access to those who would like to participate in asthma related discussions (like those on our Facebook SARP group), Ive decided to reactivate ye old Asthma Forums right here on this blog.

I took the boards down last year because I was just too busy to be involved the way I wanted to. Now that I’m entering the home stretch on my marathon training, I’ll have more time to contribute. Initially, you’ll find a general asthma group called “Living with Asthma”. In the future I’ll creating a group for severe asthmatics as well.

You’ll find the link to the forums on the menu bar at the top of the page, or you can just click the blackboard. Please feel free to post new topics or expand on old ones. Everyone is welcome! Let the discussions begin.

[If you have problem logging in with IE or Chrome, please use Firefox browser or try the WordPress login at the bottom of the page. I hope to get this fixed soon]

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