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…

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 most 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 slammer. 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 or might need to be intubated, they’ll usually put you in the intensive care unit where they can keep a close eye 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.

Everyone experiences a little indigestion and bloating from time to time. Did you know that it’s very common for people with chronic lung disease to experience frequent abdominal bloating? What’s not so normal however, is to actually become so distended that it impairs your ability to breath effectively, but that’s what was happening to me.

Everything I ate or drank was bloating me like you wouldn’t believe. For a while there I thought I was going to explode…Literally! The bloating along with my already hyperinflated lungs was making it extremely difficult for me to breath , so a couple weeks ago I decided I’d better get it checked out.

At first I thought it might be diet related, or possibly even a food allergy. To my knowledge though, I don’t have a gluten allergy (though most people actually do and don’t know it). I do however eat an almost all-organic diet with emphasis on high fiber fruits and veggies, which of course can cause bloating. But why would these symptoms come on all of a sudden? My diet hasn’t changed in 8 months.

Well, after having a ton of blood work and other tests done, turns out my lipase and amylase levels were sky high, which pointed to some kind of pancreas. And one of the major symptoms of pancreas problems is, bingo…. Abdominal Bloating!

One of the things that can happen when your pancreas isn’t working correctly, is that your body has a hard time digesting fats and sugars. The pancrease produces a special enzyme called Lipase that’s used to break down fat into smaller fatty acids. High levels of lipase usually denotes a problem with the pancreas itself; however, elevated lipase levels can also be a symptom of a host of other disorders as well, including high cholesterol , of which I have a long history of.

Anyways, 7 days later they re-checked by lipase level and thank goodness it was totally normal again, so whatever was going on with my pancreas seems to have corrected itself. But because I wasn’t experiencing the pain normally associated with acute pancreatitis, they wanna do a CT scan to make sure I don’t have the chronic form of the disease , or worse. The bloating has diminished as well , and what little I still have might be due to my flax seed intake( Ive apparently using more than the recommend amount on my morning oatmeal).

Diagnosing the cause of abdominal bloating in a person with chronic lung disease is tricky, because most of us have some degree of air-trapping, which can contribute, mimic or intensify the symptoms of abdominal bloating. The best thing to do if you frequently experience any of these conditions, is to review your diet and loose a little weight, even if you’re not very overweight to begin with. If that doesn’t work , have your pancreas and liver checked to make sure you don’t have something more serious.

As for myself, the plan is to eliminate as much sugar and saturated fat from my diet as possible and to increase my statin medications to get my bad cholesterol ( LDL) down lower to where it should be. Hopefully, there’s nothing majorly wrong with my pancreas,but I’ll be sure to report back in a couple of months to let you know if any of strategies helped , or if additional medical work-up was required.

I haven’t blogged about this experience until now, because frankly, I been too sick to sit in front of the computer for more than a few minutes at a time. You see exactly 2 weeks today, I stopped taking one the most physically addictive substances known to man...Methadone ( Some might say even worse than heroin). But rather than doing it the smart way by slowly tapering the dosage down, I decided to stop taking it…. cold turkey! Believe me, this is a place you never wanna go.

Because I had been on a relatively low dose for only 11 months ( 20 mg), I mistakenly believed that I could stop taking the drug without tapering down first. I thought I could do this safely and suffer only minor withdrawal symptoms. I mean, how bad could it be?

Let me just say that detoxing of this drug was one of the hardest things Ive ever done in my life. You wouldn’t believe the incredible hold this drug can have over you. There were times I didn’t think Id make it.

I’m not totally there yet, but I’m definitely heading in the right direction now and can finally see some light at the end of the tunnel. As of this past Monday, there were no detectable levels left in my blood.

Some background
If you remember, about 11 months ago at the suggestion of a palliative care specialist, I began a trial of low-dose methadone to help quell my worsening dyspnea. It was felt that being placed on a maintenance dose of methadone would provide better around- the- clock coverage than the short- acting opiates that I had been prescribed previously.

Within the first few days of taking the drug, I didn’t like the way it made me feel and almost stopped taking it right then and there ( In retrospect I wish I would have). But after adjusting the dose, the unpleasant symptoms went away and I pretty much forgot all about it. Methadone just became another pill I had to take everyday to function. Other than the usual side effects that you would expect when taking opiates (mainly constipation) my dyspnea actually did improve. No doubt about it, methadone did help in masking my shortness of breath to some degree and it also gave me the perceived extra energy I needed to exercise the way I wanted to.

There’s always a catch
Yes, I was breathing better, but during this past year I started noticing that every time I was discharged home after a severe asthma hospitalization, I would suffer these really weird flu-like symptoms…only much more severe. Not a lot of fun to feel like you have the flu when you’re trying to recuperate from a severe asthma flare. At first I thought it might be from all steroids or maybe from some of the sedation meds that I receive when on the ventilator, but this had never happened before prior to last year.

Then about 4 weeks ago, right after being discharged from my most recent hospitalization, it happened again, only this time the symptoms were a hundred times more intense. We’re talking violently ill. Severe chills, restless legs, agitation, anxiety, insomnia, etc. I knew I was experiencing some kind of opiate withdrawal, and the only thing I was doing differently was taking methadone. Sure enough, as soon as I would resume taking the drug, those horrible symptoms would instantly go away. I was physically addicted.

It had finally dawned on me that the reason I had been suffering these mini withdrawals after coming home from the hospital, was because I was NOT receiving the drug while in the hospital. I later discovered that the half-life of methadone is longer than any other opiate ( 15-32 hours ), so most people don’t start experiencing withdrawal symptoms for several days after their last dose. This then would explain the delayed withdrawal and why they wouldn’t start until I got home from the hospital. Things were starting to make sense now, but I did not like what I was learning.

I’m not sure why they didn’t give me methadone during some of my hospitalizations. Maybe in all the commotion of trying to stabilize me in the ER during the more severe attacks, the drug just got overlooked or something. All I know is that in 2 of the 3 hospital admissions I had during that time period, methadone is not listed on any of the itemized hospital bills , nor is it listed in my medical records. In any case, that was the deal breaker for me. If there’s anything I hate more, it’s being a slave to something that has so much power over you. What if 5 years down the road I lost my health insurance and was unable to get my daily fix? Id be in some real do-do then. I figured it would be in my best interest to get off this poison immediately. So on Tuesday Jan 4th at 5 am, I took my last 20 mg dose. No weaning, no tapering, just cold turkey. A mistake? Maybe, but I wanted this s**t out of me as soon as possible.

Preparation
I may be just a tad impulsive, but I’m not a total bonehead. I knew there would be some nasty withdrawal symptoms, so in the hours leading up to my quit day, I tried to do some research to find out ways to make them more bearable . I went to the local GNC and purchased the ingredients needed for a modified version of the “Thomas recipe” that I had found on the web. The science behind it seemed right and for the most part I think it helped. (The only problem for me was the sheer quantity of pills and capsules I had to consume everyday, about 30 capsules. They made me extremely bloated , which in turn made it hard for me to breath).

The Withdrawals

Let me preface this paragraph by saying that I have a very high tolerance to most forms of physical discomfort. My history of life -long lung disease has toughened me up in a sense. Having said that, I’m also 56 years old and like I said…. have very severe lung disease!
Perhaps I was a little hasty in making my decision to stop cold turkey, because by day # 4 I wanted to blow my brains out and from there it just got worse. I don’t think Ive ever been so sick in my life, at least not while being conscience.

Methadone withdrawal is considered within the opiate dependent community, as the worst opiate withdrawal a human being can experience. The thing about this drug (and I suppose other opiates,) is that when you stop using it, your brain starts flooding your body with extra adrenalin. You can’t sit still, your limbs go crazy, your skin becomes hypersensitive and you get this souped up version of restless leg syndrome (RLS). You wanna jump out of your skin. It’s awful. But I think the worst thing about detoxing from methadone is the insomnia. Not only do you have to endure all the horrible withdrawal symptoms, but you can’t use sleep as an escape.

By day 6 my blood pressure was getting so high that my doctor was worried I’d have a stroke and wanted me to come into urgent care center to be evaluated. Needless to say she wasn’t too please at my decision to go cold turkey from this drug in the first place and tried to talk me into re-starting the methadone so that I could safely taper. I figured I had endured this hell for 6 days , there was no way I was going to back to it, no matter how fast it would have ended my suffering. Sympathizing with me, a Nurse Practitioner at the clinic agreed and prescribed me Clonidine, which is a blood pressure medicine that also helps reduce the severity of some opiate withdrawal symptoms. She also gave me a little Valium to help with sleep. That night I got 3 hours of sleep, the first sleep in a week. By day #8 most of my symptoms had peaked and I was gradually feeling better. I could finally see some light at the end of the tunnel.

Recovery
It’s now been 14 days, and while I’m still having some residual symptoms, such as intermittent chills, insomnia and mild depression, they’re not as intense as before and I’m finally starting to feel half way human again. I’m now in what they call the post withdrawal phase, which will probably continue for several more weeks. It’s a period in which cravings for the drug can be overwhelming for some people, especially for addicts and those who have been on high doses for a long time. The temptation to end one’s suffering by just popping another a bill can be a tough wall to hurdle when you’ve been through weeks of this hell. Fortunately for me, I was never on real high doses of the stuff and never got a “buzz” from it , so I don’t seem have a psychological dependence for it at all.

What I’d like to know is why was I never told or warned that withdrawing from the drug abruptly, or even slowly, would bring on such severe withdrawal symptoms? The only thing I can think of, is that the doctor who prescribed it to me assumed that I would be taking the drug for the rest of my life, so why bother. Who knows.

Things that helped
I believe exercise played a huge role in hastening my recovery. Starting around the 4th day of withdrawals, I forced myself to get outside and walk at least a couple of miles twice a day. I did this in the rain sometimes, and even did it while having a fever and severe chills. Not only does exercise make you sweat out the drug faster, it also helps reduce the RLS symptoms and make you feel emotionally better. I also found that by taking frequent hot baths offered a few minutes of welcome relief from the unrelenting chills and RLS. Finally, I can’t over emphasize just how important the support you get from online chatrooms, forums and even Youtube are in trying to get though the worst days. Reading about others who were going through it, or who had been through it, helped tremendously.

Conclusion
I still believe that opiates have a place in alleviating the suffering that comes from the breathlessness of severe lung disease or conditions that cause retractable pain, but I think you have to consider all the pluses and the minuses before going down that road. And by all means, people need to informed that these powerful drugs are extremely addictive and that they come with a lot of not so pleasant side effects. Unless the person prescribing this drug is an expert in the field of medication withdrawals effects, if you ever go on this drug, make sure you seek the advise of addiction specialist if you ever decide to come off it.

UPDATE: 11-6-2011 It’s now been full 10 months, almost to the day, since I quit methadone cold turkey. As I mentioned in the original post, the worst of the withdrawal symptoms last about 10_ 14 days. Looking back on it now , I can tell you that I continued to have residual symptoms, especially evening chills and RLS for at least 4 months. It wasn’t until about June ( or 6 months from when I quit )that noticed all of my withdrawal symptoms had faded away.

We all know what it’s like to be in asthma purgatory for a few days or maybe even a few weeks, but for 2 months? Geeze, cut me some slack would ya!
Seriously, except for a string of 6 days in the middle October when I still on high doses of pred, Ive been in the yellow zone almost continuously since the beginning of September. Just just check my peak flow records. (A year ago I was blowing 360′s)

I can’t figure out if I’m still flaring from the original exacerbation that landed me in the slammer back in September, or if this is a new exacerbation, or if my lung function is irreversibly declining because of so many exacerbations. Granted, I was pretty sick during that last hospitalization, and all the emotional crap that’s ensued probably hasn’t helped matters , but Ive been much sicker than this in the past ,and it didn’t take me nearly as long to recover. I’m really beginning to wonder if I ‘ll ever get back to where I was before I got sick.

Bumping up my pred dose would probably help improve my pfs and my breathing in general, but I’m hesitant to do so, because prednisone, as much as I hate it, is one of the last drugs I have left in my breathing arsenal. If I start getting dependent on higher and higher doses to keep my lung function up, I might not ever be able to come off it. At this stage of the game, that’s basically a death sentence for me.

The worse part for though, is not being able to get out there and exercise. I feel like a prisoner being held captive by my own disease. Held in kind of a white collar crime prison where you’re given some freedom, but not all. Sure, Im breathing well enough where I can do those really slow 2 mile evening walks, but as far as the real stuff goes? the workouts I really enjoy? the walks that are 5 miles or more? Well, I just get too short of breath, and without those longer walks, I can’t really train for any races, and well……just Get me outta Here!

PS…. One of the cool things about digital pf meters, is that you can upload the results to your computer, or in my case to something called the Microsoft Health vault, where you can analyze, trend and/or share the results with others.
If you wanted to impressive your Lung doctor, you could print out a report, complete with graphs and bring it with you to your next appointment. No more having to keep a written diary.

You train hard and wait months in anticipation to accomplish a goal you’ve been aiming for, and then BAM! ….in a matter of hours, a severe asthma flare erases it all.
Sadly, it looks like I’m not going to be able to do next weekend’s “Urban Cow Half Marathon”.

To say I’m disappointed would be an understatement. Had I been able to do this race as planned, it would have been my 13th- 13.1 miler (half marathon), in just 5 years. That would have been very cool.

I was hoping that I might be able to pull off a last minute save and squeak through this race like Ive done in others in the past, but this last exacerbation did a bigger number on me than I thought and recovery has been excruciatingly slow. I’m just too short of breath and out of shape right now to walk 13 miles. Doing so would be reckless and stupid. I’d end up back in the slammer again for sure.

It’s not so much the missing out on the event itself that bothers me, as it is the wasted time and effort that went into the preparation of it. Many of the races I do are planned 4-6 months in advance. Time and physical well being are precious commodities to me and I hate wasting them. A crystal ball would sure be nice, wouldn’t it?

My next scheduled race, if I decide to do it, isn’t for another 6 months ( Boston Marathon). But who knows, maybe another race will pop-up before then in which everything clicks for a change. I think that would more than make up for this weeks disappointment.

On a brighter note, Ms Kerri finished her very first 10K race. I’m very proud of her for tackling her fears and going for it. You go girl!

I actually had something else prepared for this weeks post, but since there’s a good chance I’ll be heading to the slammer shortly, I thought Id do a quick update on what’s been happening.

If you’ve been watching my sidebar lately you probably noticed that my numbers have been all over the place. Ive been flaring for about a week now. On Thursday I bumped my pred up to 60 mg, and by the time the weekend rolled around I was starting to feel better. Since Sunday night though, and despite being on high dose pred, I’m started to get tight again. For the first time in more than 6 months, I woke up in my red zone. My sats are starting to drop as well and my joints are starting to ache, which is usually an indication that my CO2 is rising. In other words, I’m getting pooped out from breathing.

Not sure of the trigger this time, if any. It could be the season change. September and October have historically been bad months for my lungs. Ive also been really run down lately with a lot of muscle pain and difficulty sleeping, not sure what that’s about.

As luck would have it , my asthma started flaring at a time when I should have been wrapping up my training for my next scheduled race , which is only 2 weeks out. The 11 mile training walk that I did last week, which was supposed to be the longest and the most important training walk for this race, turned out to be a total disaster. Everything went wrong. I got way over heated, had constant GI problems, and my legs and shoulder muscles were throbbing in pain. My shoulder muscles hurt so bad during the last 3 miles, that I seriously considered catching a taxi cab the rest of the way.
I’m gonna give it one more shot later this week if I’m feeling better, but if that walk fails or I’m still sick or hospitalized, I’ll have to withdraw from the race.

In other news, I turned 56 this week( thanks everyone for all the greetings on Facebook), and on Saturday I withdrew from an Italian language class I was taking. It’s an advanced class and I just wasn’t prepared (and wasn’t feeling well). I’ll attempt it again in the winter semester.

Monday morning as I write this post, I’m holding my own, but if my numbers don’t turn around real quick, or if my O2 sats keep dropping, I’m gonna have to take my own advise and get my butt to the hospital. If by chance I do end up in the slammer today, I’ll try to get word out about my status

It sucks to have to write a post like this. Thanks for sticking by me.

I often find it frustrating that here I am, a life long asthmatic, a Respiratory therapist and an asthma educator, yet still unable in normal conversation, to describe what makes my type of asthma so different from others. When asked to define asthma in general, I usually give the spiel about how asthma is an inflammatory disease of the airways, and blah.. blah.. blah .
But lately it’s hit me that the explanation Ive been giving for so long, though medically correct and easier for lay people to understand, doesn’t really paint an accurate picture of what’s actually happening with MY own asthma. So, I’d like to take this opportunity to explain more in depth why my type of asthma is so different. I hope I can do this without boring you, or worse, loosing you.

What makes my asthma so different from others, is that are actually TWO distinct processes going on in my lungs. A “double whammy” if you will. Both of these components are related to, and caused by asthma, but they are uniquely separate medical entities. One of them I have control over, the other I don’t . Let’s break these components down;

The first and primary component of my asthma, is pretty much the same one that all asthmatics have to some degree, and that is, hypersensitive, mucus producing-inflamed airways. When you have an asthma flare up, it’s the swelling of the lining of the airways, and/or the excessive mucus production, and/or the tightening of the muscle bands that attach to the outside of the airway, and/or ALL all of the above, that causes you to wheeze and feel short of breath. No one really knows why this happens, but luckily, most of these symptoms are treatable, and even preventable, when following an asthma action plan and taking the proper asthma medications. So, as with most asthmatics, this is the part of my asthma that I some control over.

My Bronchioles( sorry, it’s the best illustration I could find)

In addition to having sensitive and  inflamed airways however , I also have a 2nd component  which is more commonly seen in people with COPD and Emphysema, but is now showing up more and more in extremely severe asthmatics. This component involves scarring and/or the loss of what they call “alveolar attachments” (essentially, elastic fibers which help pull the alveoli open from the outside).
Years and years of unchecked asthma exacerbations and multiple intubations, has left the inside of my airways severely damaged and scarred (what they call remodeling). The tissue that lines the inside of my breathing passages is literally scarred over, causing permanent narrowing ( see illustration above). Scarring of the airways looks just the way you would imagine any scar tissue to look. It’s thick, fibrous and pale looking. ( Click here to view the inside of my actual airways). Because of this scarring, my lung capacity and lung function are severely diminished. The combination of a loss of elastic recoil and a loss of alveolar attachments, makes it hard for me to empty my lungs completely (air trapping), which results in chronic breathlessness, sometimes severe.

The damage caused by lung scarring, cannot be reversed. Hence, this is the part of my asthma that I cannot control. Short of lung transplant surgery, there’s not a lot that can be done. All I can do is try and prevent the deterioration from getting worse. Ironically, it’s thought by some asthma researchers, that this kind of scarring might actually have a protective effect on the weaker airways and alveoli by preventing them from collapsing in on themselves. This would probably account for why I’m still alive.

So anyway, because of this double whammy effect on my lungs, what might be considered a minor flare up for some asthmatics, can turn into a life threatening one for me. Essentially, I have no reserve left. The inside of my air passages are so narrowed from all the scarring and inflammation, that even the slightest bronchospasm or inflammation of those airways can cause them to completely close off.

The message here is simple, if you wanna maintain control over your asthma, take it seriously from day one. Do everything you can to keep your symptoms in check, so that you minimize your chances of developing “Double Whammy” asthma. If you find that you have “difficult- to- control” asthma, try to get evaluated by a board certified Pulmonologist who specializes in severe asthma, as soon as possible . I can’t tell you how many general practitioners Ive seen over the years who claimed they knew everything there was to know about treating my asthma ( but that’s another post).

Addendum : There is a small glimmer of hope out there, that at least some forms of severe asthma might actually be treatable someday. The key, is asthma research and finding out why scarring occurs in some asthmatics and not in others. This is why phenotyping of severe asthma and the work of people like Dr Sally Wenzel, is so crucial.
If you have asthma, please consider being a volunteer for SARP. Help the researchers find the answer, so that we can all breath better. If you’d like to read more about my type of asthma, check the “About my Asthma” section

It’s been almost a year since Ive updated my asthma status. Here’s the latest report card. For the year, I give myself a C +

In general my lung function has only declined a couple percent which is good. The problem of course, is that when you’re down in the lower ranges like I am, even the slightest change can have a huge impact on the way you feel. My baseline FEV1 now ranges from 33-42%, compared to 36-47% a year ago.

Probably the most noticeable change, and my biggest complaint by far, is that I get short of breath much faster now when engaging in even physical activity. Magnify that 3 or 4 fold when I do activities like racewalking or marathon walking.

My dependence on opiates and anxiolytics to quell my breathlessness keeps growing. Where I used to only take these drugs occasionally, I now take them on a daily basis.
The good news is that they do help and have probably kept me out of the hospital on more than on occasion.

My medical establishment labels are unchanged ( no big surprise there). Under the GINA guidelines, I’m still labeled a severe persistent asthmatic. Under the brand new SARP phenotypes for severe asthmatics, I’m labeled a Catagory/Cluster 5, Childhood onset asthmatic. ( Thank you Dr Wenzel)

Symptoms
• I’m pretty much short of breath to some degree all the time now (even when I’m in my green zone). Most of the time it doesn’t bother me because I’m used to it. But in addition to the low level chronic breathlessness, I’ve also been getting these short, but very intense bouts of dyspnea which seem to spring out of nowhere. The sensation is like that of sudden suffocation. It’s like someone put a bag over my head. It feels like my respiratory muscles are too weak to expand my lungs when I take a breath in. The sensation makes me anxious, which then perpetuates this viscous cycle of not being able to catch my breath. It’s awful. This video ,which Ive used before in my blog posts, does a great job of depicting what these intense mini attacks kinda feel like. The only difference is that I don’t struggle the way the actor does in the clip.
  Thankfully these bouts only last an hour or two and are usually relieved with meditative breathing, multiple back to back neb treatments and sometimes opiates. Unfortunately, these intense flares seem to be occurring more frequent now….almost daily. They’re probably a result of declining lung volumes and increased sensitivity to air-trapping.
• For the last 6 months I’ve also noticed a slight, but persistent audible insp wheeze when I breath. Hence, the “Inhaler voice” It’s more annoying than anything else, but I hate the way it makes my voice sound. ENT actually checked my vocal cords and they look fine ( no stenosis)
• It’s becoming increasingly more difficult for me to sleep laying flat. I now have to pretty much sleep with my back propped up, almost to a sitting position. Last year I switched from a conventional bed to a foam bed, which helped ease my lower back pain.
• A noticeable decreasing tolerance to exercise and physical exertion in general. I get winded much easier now when I do any type of exercise or walks.

Incarcerations

• 2 hospital admissions so far this year, totaling 12 days. 8 of those in the ICU, and 2 of those on a ventiltor.
• Ive had one intubation this year, bringing my lifetime total to 16 ( we’re talking Ripleys Believe it or not stuff)

Fitness and Diet
• Despite my worsening dyspnea, I still force myself to walk at least 4 days a week ( 4-6 miles per walk) and even farther when I’m training for a race.
• Earlier this month, I switched to an all organic diet. Additionally, Ive cut my sugar intake in half and eliminated HFCS almost completely. It’s way too soon to see how much of an impact this new way of eating will have on my health in general, but I suspect it will eventually be a positive one. How could it not.

Treatment Plans
• My Asthma action plan and medication list are pretty much unchanged, except that I take methadone (10mg) every evening now. [UPDATE---Methadone discontinued on Feb 3rd 2011]

New Treatment Options
• Bronchial Thermoplasty is no longer an option for me. My asthma is too severe, my lungs are too scarred. I don’t have much smooth muscle left to shrink. (* Speaking of Bronchial Thermoplasty, this is one of better articles Ive read on the subject. It’s objective, factual and well written)
• I’m waiting for clinical trials to begin ( hopefully by this time next year) on some new Th2 (IL-4/IL-13) blocking drugs.

  Th2 blocking drugs (if they turn out to work), block protein factors related to, but not the same thing as, allergy. These blockers are believed to work “higher up” on the immune inflammatory cascade (where things are getting started) so that they “could” block more things of relevance to asthma. I have a problem with mucus blocking my tiniest airways, which causes me to air trap. (air trapping is the number 1 cause of my suffering). We’re hoping that this new class of drugs might help with that. ( per Dr Sally Wenzel)

For 5 years now, I’ve been heralding the benefits of daily exercise in people who have severe lung disease. That message is plastered all over this blog, and I believe is the reason that Ive lived so long. But wait, just as with every other facet of this frustrating disease, there’s a catch 22.

While there’s no argument that exercise can make a huge difference in the lives of people suffering from lung disease, Ive long suspected that too much exercise also carries with it, the potential for some not so pleasant side effects. Namely, dynamic hyperinflation, aka…. air trapping.

Here’s the deal…. if you have an obstructive lung disease and are prone to air-trapping (which is usually the case if you have severe asthma and to a greater degree if you have COPD or Emphysema), you need to be aware that any physical activity that makes you breath faster and deeper for prolonged periods of time, can also cause you to trap more air, which in turn can make your dyspnea worse and can even trigger a serious, life-threatening exacerbation. That’s right, you heard it from the king of asthmatic marathon walkers… If you exert yourself too much for prolonged periods, you can actually make yourself sick(er)…at least in the short term. The severity of ones lung disease and the propensity for air-trapping (as indicated by TLC and FEV1 ), probably adds to the likelihood that these negative side effects will occur. It also appears that this increased “air trapping”, at least in part, contributes to the delayed onset of symptoms that sometimes follows strenuous activity.
(Btw..the symptoms of air -trapping should not be confused with exercise induced asthma, which is totally different).

Now that’s not say that you shouldn’t exercise. In that regard, my message is the same as it’s always been, and that is….If you have asthma or any obstructive lung disease, you need to get out there and exercise your butt off regularly! Just don’t over do it, and always be aware of your breathing pattern.

Oh..and I should also point out, that it doesn’t seem to be how much exercise you do, but rather, how intense the exercise is , that determines how severe the air-trapping will be. If you participate in a sport such as running or jogging ( and yes, that would include racewalking), you’re probably going to be much more prone to developing increased air trapping than you would with regular fitness walking or from milder forms of exercise.

So for me, does this mean I should stop training and/or stop doing marathons? Probably. Will I follow through on my own advise? Probably Not. I’ll be the first to admit that I have a bad habit of over doing it. But, out of the 19 races Ive completed in the past 5 years, only 2 of those landed me in the hospital as a direct result. And don’t forget, non-asthmatic people end up in hospitals too from “over-doing it” .

Hey, I’m short of breath 24/7 anyway, so if pushing myself to the brink is what I need to do to really feel alive, then regardless of the consequences, that’s what I’ll do. I’m willing to take that risk because Id rather be sick and feel happy , then to be healthy and feel miserable. Sounds contradictory I know, but it’s really not. We all deal with our afflictions in different ways.

It’s been just over 2 weeks now since I did the Boston marathon, and except for today, which I can’t blame on the marathon, Ive managed to stay pretty healthy. That hasn’t always been the case right after a big race. Looking back on how things played out on Boston weekend, I think the strategy of proactively medicating with prednisone, paid off . If you remember, I bumped up my pred to 60 mg 2 days prior to the race and then rapidly weaned back down afterward. I still got really tight and wheezy immediately after the race and had to take several back to back neb treatments throughout that evening, but thanks to the prednisone I was able to keep things from escalating. I think a lot of the post-race flaring was caused by my body being in state of shock from all the exertion I put it through. As much as I hate the stuff, I think the prednisone did a great good job at protecting my airways during the race and in the hours and days that followed. It might have even kept me out of the hospital.

Another thing I learned from doing this marathon, is that I need to take off a few pounds. I mean it just makes sense that the lighter you are on your feet, the faster you’ll be on your feet. The less you weigh, the less stress you’ll put on your legs and feet and even your heart and lungs. I might not look real fat, but the fact is, I’m 10 lbs over my ideal body weight. For the Boston marathon I weighed in at 150 lbs, which is the heaviest Ive ever been at any of the marathons Ive done. Part of that weight gain was probably from steroids, but I’m sure the bulk of it was from eating too much fattening food during the winter holidays.
Back in 2006 when I walked my fastest marathon ever, I weighed 144lbs. We’re only talking 6lbs less , but that 6 lbs made a world of difference when it came to speed. I ended up finishing that race almost 30 minutes faster than I did this one. Too bad I didn’t pre-medicate with prednisone during that 2006 race, because two days after that race I ended up in the hospital. But back then, the whole marathon/ severe asthma thing was still new to me , and I wasn’t yet convinced that walking a marathon could actually make me sick(which by the way, I fully believe is the case now.) As far as my weight goes, you might not know this, but since I began walking for fitness back in 2004, Ive actually lost and kept off nearly 20 pounds. That’s right, the steroids along with a lack of physical activity, was turning me into a little blimp.

So anyway, to put into action the things Ive learned from the Boston experience, Ive set a goal to loose 7 lbs and then keep it off. I will accomplish this by doing more strength training at the gym and by eliminating some of the junk food from my diet. I hoping to knock these pound off in about 2 months, just in time for my next gig ( whatever that might me). And from now, every race I do, I’m going to bump up my pred. Yes, I hate the drug, but if it will keep me out of the intensive care unit, I’ll take it.

Speaking of the Boston marathon, my friend and ever so funny walking partner/guide in that race , Miss Dizzy Lizzy, is finally getting caught up on her blogging ( Some excuse about not having her laptop). Anyways, she promises to have a race report about the Boston marathon , up by this weekend. I love reading other people accounts of that race.

Ok, so I look really strong in some of my finish line photos, but believe me.. looks can be very very deceiving. I’m an expert at hiding what I feel inside (I think most asthmatics are, to some degree.) Behind those smiles were waves of excruciating pain shooting down my legs. My breathing was really labored at times and my calf muscles felt like they were going to explode, but I told myself at the start of this race that if I made it past mile 21, that no matter how bad my breathing was, or how much pain I might be in, that I would push on with positive thoughts in my head and a smile on my face….And that’s exactly what I did! And if for no other reason, that’s why I’m so proud of myself for finishing the race in style.

If you look really deep, you can see the pain starting to come through
(Finish line photos)

I don’t care how healthy you are, even if just walking a marathon, when you get to a certain distance in a race, your body starts to hurt really bad (I think that’s what they mean by “Hitting the WALL”). The problem is, you can’t really stop moving or you run the risk of your whole body cramping up. It’s happened to me before, and I’m telling ya..it ain’t a pretty scene. A full body cramp would end the race for you , right then and there. So after 20 miles, you do whatever you can to stretch out those muscles while you’re moving, but you never stop.

So what did it take to get this 55 year old severe asthmatic across the finish line at the Boston marathon?
Well, how about lot’s of training, lots of medications and a ton of determination and willpower! Having a good friend walking along side of you , who makes you laugh constantly, probably helps as well.. Thank goodness for Lizzy.

Here are couple photos I left out of the main photo set. I think you know why…

(Had to stop to sneek a neb treatment about every 7 miles along the course… this eats up a lot of time )

( Needed 3 neb treatments back to back after crossing the finish line. )

Here are a few other things you probably didn’t know

*To control my asthma during this 26.2 mile race, in addition to the neb treatments every 7 miles, I took appx 24 hits off my inhaler ( about 3 puffs per hour). On top of the inhaled drugs, I swallowed 10 mg of prednisone every hour , chased by an antacid to control the stomach burning that the prednisone causes in the first place . Thank You Jon ( our spotter who went and got me some TUMS in the middle of the race.

*To control the pain in my calve muscles and the metatarsalgia pain in my feet, I took 2 Motrins every 2 hours along the course, 6 in total.

*For energy and hydration , I consumed 2-4 oz of plain water every mile, alternating with Gatorade every other mile. I did this for the first 20 miles, then switched to a 50-50 blend of electrolytes and water (2 oz) every mile for the rest of the race. In addition, I swallowed one Powerbar gel ( tangerine with double caffeine) every 6 miles.

So as you can see, doing this race ( or any other for that matter) wasn’t as as easy for me as most people might think. I just make it look that way:-)

]]> http://breathinstephen.com/behind-that-finish-line-smile/feed/ 2 http://breathinstephen.com/knocked-down-but-not-defeated/ http://breathinstephen.com/knocked-down-but-not-defeated/#comments Fri, 05 Feb 2010 20:23:19 +0000 Stephen http://breathinstephen.com/?p=11174

(Arterial Line)

Thanks everyone for your support and especially to Kerri and Dr Wensel for staying in close contact during my 98th hospitalization. Thanks also to ALL the wonderful nurses who took care of me..You guys are awesome! Most of all, thank you to my dear Douglas who goes through hell every time I get sick. I’m so sorry I put him through this. Yes, living with a brittle asthmatic is definitely not for wimps.

Im starting to sound like a broken record with these hospital reports, but no kidding, this flare-up was no picnic. It ranks up there as one of the worse on record for me. On a scale of 1-10, probably an 8 or 9. I was pretty sick there for a while and was starting to have doubts as to whether I was actually going to pull through it. But it seems I have more lives than all my kitty cats put together and will apparently live to do this all over again sometime the future ( I just hope it’s not the near future).
Not sure what the trigger was this time, but I’m guessing that the cold I had from the previous hospitalization never quite went away. ( walking in the rain last week probably didn’t help either)

The primary problem this time, and what usually happens when I get really sick like this, is something called CO2 retention. The act (or work) of breathing becomes so hard, that the level of CO2 in my blood climbs really high ( what they call respiratory failure). I was in failure for 4 days with PCO2s ranging from 38 to 70 (when breathing at a rate of 50, that’s not good) My lungs get so tight, that I can’t move any air…I don’t even wheeze! When you listen to my lungs ,you can’t hear any air moving.

Because of all the problems I experienced with lack of sedation while I was on the ventilator the last time, I chose not to be intubated this time ( probably a mistake,because it would have immediately lowered my Co2). Instead , we relied mostly on cont alb nebs, bipap, and steroids to reduce my CO2 indirectly. Thanks to a call put out to Dr Wenzel ( who btw, was in London England at the time), a huge increase in my steroids was ordered along with a few other strategies she recommended, seemed to set the stage for my eventual improvement. Finally on the 3rd day with the increased steroids on board, my lungs started opening up , my work of breathing decreased, and my CO2 started to fall. By day #4 my PCO2 was back to normal and I was starting to wheeze again ( a good thing) . Ironically, while all this was all going on, I found out that there was actually a world-wide shortage of propofol. So even if I chose to be intubated, they would have probably used an alternative sedative agent. Weird huh

On day # 5 I was stable enough to be transferred out of the ICU to the step down unit where I continued to improve. On day #7 I was bugging them to let me go home. On day #8 I was paroled.

This time around I thought Id do something different and post some of the good pictures instead of the bad ones. Of course, I still have to include my battle scars pics. I must have been stabbed 50 times just to gain access to 2 functional IVs and one arterial line. My arms look like black,blue and green swiss cheese and are really really sore.

Today, Im breathing a little better, though my lungs sound like a washing machine during the wash cycle. Course and wet sounding wheezes that you can hear from across the street. Again, this is a good thing and means that my lungs are opening up. The danger is not quite over, as there is a possibility that I could rebound during the next few days, but I think for the most part, I’m over the proverbial hump. In any event, I can already tell that recovering from this exacerbation is going to be slow and difficult process.

This may not come as a big shock to everyone, but these recent flares have taken such a toll on my body, that a Boston victory seems unlikely. There’s just not enough time to regain the training Ive lost. Having said that, I’m not going to let asthma stop me from doing what I love. Boston may, or may not happen. We’ll just have to wait and see.

Just one final thought…..Though I may look happy in the pictures above, it was all for the camera. I’m a ham, no doubt, but I’m also human. These recent exacerbations( 3 hospitalizations in 3 months) have left me incredibly frustrated and down on myself. Steroid induced or not, right now I’m in a pretty deep depression that I’m not sure how long will take to climb out of. I’m not really sure that I even wanna continue blogging about my disease. I hate to be selfish, but lately, just the word “asthma” or the thoughts it provokes, make me wanna run and hide. If I seem slow to respond or update, please bare with me. Thank you everyone for being such good friends. We have built a huge community around our disease and are getting the word out. You should all be very proud.

Postscript 2-7-2010; I had no idea I would strike such a chord with my friends over my comment about not wanting to blog about my asthma anymore.
Don’t worry, I will definitely continue to blog and post on asthma support sites. Maybe not as often , and maybe not focusing as much on my own asthma, but I will definitely keep everyone up to date on what’s happening in my crazy world. I’m just really burnt out right now and I need to focus my attention on things other than my own breathing. Ive been blogging about my asthma and my declining health for 5 continuous years now. I don’t want to be one of those people who chronicles their own death(as noble as that may be). I need to start paying more homage to my idol, the King of the ballad , Mr Manilow. (I haven’t even seen his new show at the Paris Vegas yet.)
So NO worries…. I’m not going away, my life is way too fascinating to keep all to myself

]]> http://breathinstephen.com/knocked-down-but-not-defeated/feed/ 12 http://breathinstephen.com/i-still-have-it/ http://breathinstephen.com/i-still-have-it/#comments Sun, 24 Jan 2010 00:47:56 +0000 Stephen http://breathinstephen.com/?p=10984

Whatever IT is, I must still have it, because today I walked 10 miles. And I couldn’t be happier about IT!

I think this tune kinda captures the mood for the day. I’m Alive (by ELO)

Now, I’m not going to say it was easy, cuz it wasn’t. In fact, it was one of the most difficult training walks Ive done in a long time. My lungs got tight right off that bat, and by the time I got to the 6 mile mark, I was hitting on my inhaler every 5 to 10 minutes (12 puffs in all). Did I mention that a bunch of thunderstorms erupted and it poured down freezing rain almost the entire 2 hours and 43 minutes that it took me to finish the walk? ( shame on you weather man) Yup, I was soaked to the bone and wheezing like a punctured set of bagpipes, but I pushed on, and man… did I feel alive!

The last 3 months have been really rocky. Two hospitalizations in a 12 week period and never fully recovering from either one, had me feeling pretty down and unsure if Id ever be able to any long distance walking again. Well with today’s uncertainty eliminated, Ive regained some of that confidence and am ready to tackle the other 300 miles that I’ll need to walk to be ready for Boston.

Note to myself: I will definitely need to take a couple neb treatments during Boston and also during my longer training walks, because the inhalers just don’t cut it when I’m over exerting myself.

]]> http://breathinstephen.com/i-still-have-it/feed/ 5 http://breathinstephen.com/gotta-whole-lot-a-walking-to-do/ http://breathinstephen.com/gotta-whole-lot-a-walking-to-do/#comments Wed, 20 Jan 2010 15:30:13 +0000 Stephen http://breathinstephen.com/?p=10767

It’s now or never –I’ve got some serious walking to do.

If all goes well, I’ll be kicking off my Boston marathon training this Saturday with a 10 mile bridge to bridge walk in San Francisco. For the next 12 weeks (lungs permitting), I will be walking my ass off, and in the process will rack up close to 300 miles. From this point on, I will need to focus a 100% of my attention on my training , so I’ll probably be blogging less frequently. I will however, post a weekly update of my progress.

I’ll be following the training template below. Because I’m already a month behind, I’ll be entering at the 3rd week of the schedule and finishing on the 16th. To cram this much this training into such a short period, will definitely be a challenge.

(click to enlarge)

As with previous training sessions, I’ll be doing most of my lsds (long slow distance) walks, in San Francisco along the waterfront and Golden Gate Bridge, and my shorter 3-5 mile tempo walks, in Crockett, California on the Al Zampa Bridge.

So you might be asking , why is all this training and preparation so important for someone who is only walking a marathon vs running one? Well, 26 miles…. is 26 miles, whether you run it, walk it, or crawl it. It’s not like you’re given a week to complete the race. If that were the case, anyone could do a marathon. I have 7 hours to cross the finish line at the Boston marathon, which equals a pace of about 16 min/mile. If you’re not quite sure how fast that this, just imagine walking at a brisk pace, non-stop, for 7 + hours. I assure you it’s not easy, even for people who prepare for it. The average body is not build to withstand the stress of trekking 42 thousand meters without a break. No matter how healthy you are, you need to train for these kinds of races.
Then there’s this little problem I have with my lungs. My lung function is less than 50% to begin with, and on top of that, I have very severe asthma. Put all these things together and you can see why training for a marathon is such a big deal for me.

Ive only been out of the hospital for 2 weeks now, and because my shortness of breath and exercise tolerance have worsened this past year, until I know how my body is going to react to some of these upcoming training walks, I can’t really say with certainty, if I’ll be up to the task of completing, what would be my 7th marathon and last marathon.

Preparing for an event like the Boston marathon also requires a huge commitment of time, money and sweat. For this reason, I’m not going to make a final decision about my participation in the race until Jan 30th. Here’s hoping for a green light.

]]> http://breathinstephen.com/gotta-whole-lot-a-walking-to-do/feed/ 3 http://breathinstephen.com/recovery-progress-note/ http://breathinstephen.com/recovery-progress-note/#comments Wed, 13 Jan 2010 14:57:31 +0000 Stephen http://breathinstephen.com/?p=10672

So after each bad asthma exacerbation or flare-up, I feel compelled to write something about the recovery phase that follows. You would think that after going through this process more than a hundred times, that I would get use to it. You learn to deal with it a little better, but you never get used to it.
Better in some ways, and worse in others, the anatomy of this recovery is pretty typical. So far, this is how it’s been going……

Dyspnea : As with most of my post hospital recovery periods, days 5 and 6 have been the hardest to deal with in terms of being short of breath. I was breathing well for the first couple days after being discharged from the hospital, but then my dyspnea levels gradually crept back up again. Yesterday it was unbearable. A mixture of bronchospasm ,air-trapping, stomach bloating and humid weather, I felt like I was suffocating . I’m not sure what today will bring, but I hope things turn around soon as I’m starting to get to really tired of this.

Steroid Withdrawals : This time around they’ve been fairly mild. No major psychosis, just some mild muscle cramps, acne and mood swings. The main reason Ive been spared this time, is because my maximum dose in the hospital was only 60 mg per day. In previous hospitalizations, Ive been on as high as 300-500 mg per day, which can lead to weeks of intense withdrawals and even the potential to re-exacerbate. I have to thank Dr Wenzel for this one. She’s been pretty much able to prove, that high doses of steroids don’t do much for someone with my type of asthma. Currently on my taper, I’m down to 30mg.

Opiate Withdrawals: Next to the bouts of severe breathlessness, the worst problem Ive had to deal with this time, are opiate withdrawal symptoms. While I was in the hospital, I received a lot of IV narcotics for my dyspnea. And because I was on a ventilator this time, I received even more than I normally do. I was getting them almost every hour for the first 4 days and then about every 2-3 hours for the last 3 days. That figures out to more than 100 doses of intravenous Dilaudid and/or Fentanyl. That’s a lot of opiates to put in your body in just a 7 day period. And since I don’t take any of these more potent morphine-like drugs outside of the hospital, stopping them abruptly ( ie cold turkey), always causes me some pretty nasty withdrawal symptoms. Insomnia, nonstop chills/rigors, restless leg syndrome and muscle cramps, just to name a few. The symptoms gradually fade, but the first week can really be a bear.

Body Trauma and weakness: Laying in a hospital bed for a week, working really hard to get a breath, getting jabbed with needles and pumped with drugs and having a tube shoved in my wind pipe (and one in another place), has been pretty traumatic to this old body. I’m starting to feel all the aches from all the IV bruises and Im still weak as hell. You should see the welts left on my belly left from the Lovenox injections.

Looking forward to better days: No matter how bleak the situation seems during the first week of a rough recovery, I always try to focus on better days ahead. Consider this if you will; Yesterday, I could barely walk from my bedroom to the living room without getting totally winded, a distance of less than 10 meters. In just 13 weeks from now, I will attempt to walk 42 THOUSAND meters, at the Boston marathon. That means that between now and April, my endurance will have to increase 4000 fold! The way I feel right now, it seems an impossibility. Give me another week, and my outlook will probably be totally different.

Doing something special for myself: Finally, and maybe this is the selfish part of me, but if survive this exacerbation ,I plan to treat myself to a few goodies. This time, a haircut, a new pair of racing comps (shoes), and a ticket to Barry’s new show over at the Paris Las Vegas. Ok, so I’m a little spoiled.

]]> http://breathinstephen.com/recovery-progress-note/feed/ 2 http://breathinstephen.com/97-misinformation-and-a-virus-from-hell/ http://breathinstephen.com/97-misinformation-and-a-virus-from-hell/#comments Sat, 09 Jan 2010 17:52:45 +0000 Stephen http://breathinstephen.com/?p=10544

Battle scars: 4 failed arterial line attempts and 12 failed IV attempts. I have no veins left and my radial arteries are so scarred up from previous insertions, that it’s virtually impossible to get access unless they put a central line in. Very frustrating for the doctors and very painful for me.

I’d been having vague flu like symptoms, such as stomach bloating and chills for about a week before my lungs started to act up. Less than 3 weeks earlier I had received the H1H1 vaccine as well as the regular annual flu shot, so the last thing on my mind is that I might actually be coming down with the flu.

By New Years Eve afternoon my peak flows started to trend downward, and by that evening they had dropped from 340 to 200. My sats fell from 97 to 89%. I was requiring neb treatments almost every hour and had considered going to the ER right then and there, but had decided against it because of it being New Years eve and all. I figured the hospitals would be jammed with New Years revelers , so I decided I would just try to tough it out till morning and then re-assess. Maybe by then I would feel better. After a horribly breathless and sleepless night spent next to the nebulizer machine, I figured I had had enough, bit the bullet and went to the ER.

As is usual for me, rather than being carted in or delivered by ambulance, I strolled into ER on foot. I told the triage Nurse what the problem was. She took down my name and asked if I was in serious distress at the moment ( since I never really look sick) , I said I was OK at the moment . She had me take a seat in the waiting room ( which by the way, was pretty much emptied at 11am). 5 minutes had past, then 10 minutes, and 30 , and still they had not called me in. By now it had been almost an hour since I had a breathing treatment and I was really starting to close up. I hate making a scene , but I thought I was going to pass out, so I stood up and walked back over the triage window. The Nurse took one look at me and said ” OH MY GOD .. You haven’t been seen yet??? I said no, and I think I’m going to pass out. Within 30 seconds I was on a gurney on my way to the resuscitation room . I didn’t actually pass out, but I sure prompted a lot of people into action. Before I knew it, I was on a continuous albuterol neb with people whirling around me trying to get IVs in. They asked the usual questions.. Have you ever been intubated? Before I could answer, one of the ER doctors recognized me and said “He’s a bad one….he’s been intubated a dozen times”
Within a record 30 minutes, the ICU team had completed their evaluation and I was on my way to the unit.

In the ICU they put me on the usual Bipap setting of 12/5 with 15mg/hr of Albuterol piped in. Because of my flu symptoms, they swabbed my nose with the rapid flu test, put me on droplet precautions and placed me in isolation, which means anyone coming in contact with me had to wear a mask and eye shields. Im sure the staff weren’t too please about that ( I know from personal experience what a pain it can be to work with a patient who is in isolation, especially a ventilator patient.)

For the first few hours, the bipap seemed like it was helping, my Sats had increased to 98% with an FIO2 of just 40%. Although I was saturating well, I was starting to feel that all familiar ache that I feel when my CO2 starts to climb. After several unsuccessful attempts at placing an Arterial-line ( which hurt like hell), they finally gave up and resorted to doing individual ABG draws.

(My Hannibal Lecter look before Intubation)

I had now been on bipap for about 4 hours and my PCo2 was starting to climb. The first PCO2 came back at 43, but I was on bipap and my resp rate was in 50s ( this is not a good sign). An hour later my PCO2 was 60. A half hour after that, it was 66 and my Ph 7.29 . It was time for the intubation talk. Rather than himming and hawing about how long to wait, this time I told them straight up, just intubate when you think Ive had enough. They agreed, and 30 minutes later it was lights out for me. 14 hours later I woke up with a tube down my windpipe.

Just a few hours later I was extubated and talking up a storm …or should I say cuzzing up a storm. Why was I not kept down longer? Why didn’t they use propofol to sedate me. Why were the RTs being so rude to me this time?

The anesthesiologist had promised me that they were going to use propofol and keep me asleep for at least 48 hours, but it turns out that I had the same weird reaction to propofol as I did during the previous intubation. Something called “infusion syndrome“,so they had to stop giving it to me. They thought it was strange, because propofol infusion syndrome usually occurs in people who are sedated for several days.
For that reason they had to use Versed and Fentanyl instead of propofol to keep me sedated, making it much harder to keep me asleep. At one point I actually remember walking up “paralyzed” and unable to move or communicate. Apparently they had not sedated me enough and I woke up before the paralytic agent (a drug they use when they insert the tube) wore off. Talk about a horrible experience. Nothing like being a zombie. In total, I was on the ventilator for less than 2 days.

After being extubated the RT gave me the choice of using the continuous neb or the bipap…. of course I chose the neb. I did Ok for about an hour , but then once again ,my PCO2 started to climb. Not happy with my recent ABGs, the RT comes into the room accusing me of causing this spike in my CO2, because of not following her instructions of using the bipap. WHAT THE F!
Since when is the patient suppose to decide what type of therapy he gets? Even an RT/ patient deserves someone else to call the shots when he’s sick. I didn’t like her attitude and I told her. The next thing I know, she sends in her supervisor who starts patronizing me. He says to me…” your Ph is 7.30 and your CO2 is climbing again. If you want , I can help you correct it. If you’re not willing to help,then there’s nothing I can do for you. WHAT THE F AGAIN? What’s with the all the attitude. Evey one was nice to me before I got exubated. What did I do?

I was so pissed off I wanted to scream, but I figured that they would treat me better if I did what they wanted. So I just sucked it up and did what they asked. The male RT set me up on what they call “non-Invasive” ventilation. It’s basically where they hook you up to a ventilator with a mask instead of an endotracheal tube. Its just a fancy way to give Bipap. He also encouraged me to play with the ventilator settings , so that I could adjust it the way I wanted. ( Remember, I’m an RT. I know how to operate ventilators). At this point I couldn’t figure out if he was making fun of me, or if he appreciated the fact that I was trying to play ball with him and cooperate. In any case, his act of showing a little kindness paid off, and within a short time my ABGs were stabilized and everyone was happy, including myself.

12 hours later I was strong enough to breath on my own and they were able to discontinue the breathing machine entirely. So, what was up with all the attitude they were directing my way? ( more about that later)

( Here’s me after coming off the Ventilator. What a difference huh?)

I have now been in the hospital for 3 days, been on and off the ventilator, and was starting to breath a little better. The Rapid flu antigen test came back negative, but because the test is only 50% accurate, they decided to do the more sensitive test for swine flu. That test takes 6 days and had to be send the to state for processing. What this basically meant, is that even if the test was negative, I would be spending the rest of my hospital stay in isolation. I really didn’t mind because it assured me a private room my entire hospital stay.

On Day 4 I was deemed stable enough to be transferred to the step down unit, where I stayed until my discharge 3 days later. While there , I was placed back on a continuous albuterol neb, but this time the dose was decreased to 5 mg per hour.I did fine on that , but began coughing much more than I usually do. My biggest complaint was the congested nose and the unrelenting chills from whatever virus I had. Eventually , my chest became congested as well. I was able to cough up some gunk , which they analyzed in the lab. Seems on top of this virus from hell, I also had a bacterial infection brewing and now had bronchitis. The next morning they started me on Doxycycline and decided to keep me in the hospital an extra day. On Friday I still felt like crap, but was home sick and convinced them that I felt well enough to go home.

I am not an anxious person, unless I’m suffocating to death. I can see now though, that my requests for painkillers to make my breathing easier, would probably account for why some of the doctors were acting weird around me. On more than one occasion, I has some of the doctors trying to convince me that I should try some long acting anti depressants and/or anti -anxiety meds, instead of opiates to manage my dyspnea. They also gave me a list of referral to various specialists who supposedly deal with dyspnea management ( all of whom, Id seen in the past without success). I reminded her, that I was taking opiates on the recommendation of one of UCSFs own highly acclaimed palliative care doctors.
In the end, I basically told her that we had been down this road many times before, and I that I refuse to discuss the matter any further. It’s my life, and if I choose to take opiates during bouts of severe breathlessness, that’s my choice, and it should in no way, change how I am treated during an active severe asthma exacerbation. Case closed!

Dont get me wrong, I’m grateful, and for the most part , satisfied with the medical care I received during this hospital stay. There were a lot of good things that happened as well. For example, for the first time ever, the doctors actually granted my request to not exceed 60 mg per day of Solumedrol or prednisone, which really helped.

Bottom line…Much like a credit report, incorrect statements or diagnosis that end up in your chart , can have a negative effect on the type of medical care you receive for years to come. I think this is especially true when it comes to medically complex patients (such as severe asthmatics.) A lot of this misinformation could be avoided if physicians were allowed to follow their patients in the hospital. Of course, that’s not likely to happen.

On asthma severity scale of 1-10, this probably only ranks a 6 or 7, though having the flu at the same made it feel like a 10. Number 97 is behind me now, but I still have a long recovery ahead. It will take me weeks to regain the strength I lost in just one week of illness. As Ive said before, the aftermath of a severe asthma exacerbation is often more difficult to deal with than the actual attack itself.
It often takes several days after the hospitalization before you start feeling the trauma of what your body has been through. Being jabbed dozens of time with needles and catheters. Lack of sleep, sensory overload, having a hose shoved down your windpipe, being place on artificial life support. And then of course , there’s all those potent drugs. All these catch up with you. Yes, the recovery is often the worse than the treatment.

If there are any bright spots to this other wise crappy week, it would be the wonderful Nurses I encountered in both the ICU and Step down units who have taken care of me many times. They are angels.

And finally, a special thank you and hug for Kerri and Dr Wenzel who took the time to check up on me everyday while I was in the hospital via telephone. Dr Wenzel recommended that they do a PFT on me for discharging me,..and they actually did it! Now, that’s what I call clout!

PS…In all fairness, the RTs in question were new to me . I had never worked with them before. Maybe they weren’t aware of my little quirks, but it still doesn’t give them the right to treat me like a 2 year old. As far as some of the physicians concerns, I suppose they were justified, I just wish they would talk to me before rushing to conclusions.

]]> http://breathinstephen.com/97-misinformation-and-a-virus-from-hell/feed/ 27 http://breathinstephen.com/your-mileage-may-very/ http://breathinstephen.com/your-mileage-may-very/#comments Tue, 29 Dec 2009 16:10:16 +0000 Stephen http://breathinstephen.com/?p=10190

Well, despite a few minor setbacks, I still managed to end the year with883 miles walked. A drop of almost 400 miles from my best walking year back in 2006, but nonetheless, still impressive when you consider what I have to work with.

Overall, my basic walking routine really hasn’t changed that much, I’m still out there walking at least 3 days a week when my lungs are behaving, and I try to hit the gym up at least once a week. I think the reason I was lagging behind in 2009, was that I was incarcerated 3 times (exacerbations and hospitalizations can really put a damper on things). That, plus I only completed 3 training cycles for the year, instead of the usual 4. One was for a full marathon ( Boston) and the other two for half marathons (ET midnight and San Rock&Roll). Those training cycles can really pile on the extra miles. Training for a full marathon for example, can easily add an additional 300 miles to the count.

I hate to admit it, but my lungs are finally starting to impact my ability to exercise and to walk long distances. It used to be that I would get 10-15 days of decent breathing in between flare-ups, even when I was training for marathons. Now it seems that every walk or gym workout that I do leaves me severely short of breath… sometimes for days. I’m not sure how much longer I’ll be able to keep this up.

Having said that, my goal for 2010 remains unchanged. I want to complete one more full marathon ( hopefully Boston) and Id also like to pass the 5,000 mile mark with my walking. After that, I’m definitely going to slow down.

And speaking of mileage; My legs, feet and lungs aren’t the only things that are suffering from wear and tear…. Check out my shoes!

[This is what the sole of my walking shoes look like after just 200 miles.]

In 2009, I went through 3 pairs of these Asics Hyperspeed 2s racing flats. Weighing only 158 grams (without the insoles) and with a low profile heel, they make excellent racewalking shoes. Unfortunately, since they’re made for speed and not distance, they wear out really fast. It’s also hard to find them now, since they’re not making them anymore.

[The Asics Hyperspeed 3 racing flat]

For 2010 I’m going to try out the replacement model (the Hyperspeed 3) They’re pretty much the same shoe, though the new ones don’t seem to cup my heel as well.

]]> http://breathinstephen.com/your-mileage-may-very/feed/ 9 http://breathinstephen.com/a-physicians-perspective-on-dysnea-and-opiates/ http://breathinstephen.com/a-physicians-perspective-on-dysnea-and-opiates/#comments Tue, 22 Dec 2009 14:16:35 +0000 Stephen http://breathinstephen.com/?p=10302

The Happy Hospitalist must have read the last post I published regarding dyspnea and opiates, because he just wrote an article about it.

I don’t know how many physicians actually read my stuff, but I’m totally flattered that someone would find one of my stories interesting enough for them to expand on it and write their own post about it.

Be sure to check out the Happy Hospitalist blog.

Great stuff!!
And if you were brought here by way of the HappyHospitalist, thanks for stopping by!

]]> http://breathinstephen.com/a-physicians-perspective-on-dysnea-and-opiates/feed/ 2 http://breathinstephen.com/opiates-dyspnea-and-me/ http://breathinstephen.com/opiates-dyspnea-and-me/#comments Fri, 18 Dec 2009 16:30:17 +0000 Stephen http://breathinstephen.com/?p=9824

No longer just reserved for severe pain control or to relieve end of life suffering, today a growing number of people with severe lung disease are using opiate medications to help quell their severe dyspnea . Well, you can now add to that list, a certain quirky little asthmatic marathon walker, by the name of Stephen.

The decision to write a post about the use of opiates to treat my breathlessness was a tough one for me. As a responsible blogger I always worry about the possibility of sending the wrong message, especially when it comes to the use of certain treatments and/or medications. Let me be clear in stating, that I don’t advocate the use of opiates for asthmatics in general… the risk of respiratory depression is just too high. There are however, a small percentage of people who’s obstructive lung disease is so advanced, that nothing else works in quelling their breathlessness. Though opiates should only be used as a last resort in treating dyspnea, they do offer a degree of welcome symptom relief for people like me, so I think their use is important to talk about.

For the past year Ive been taking short acting opiates ( ie hydrocodone (Vicodin)and sometimes Dilaudid or Fentanyl) on an as-needed basis for bouts of prolonged moderate level breathlessness. When I say breathlessness, I’m not referring to the sudden shortness of breath that develops from acute bronchospasm or chest tightening you experience during an asthma flare, rather, I’m talking about the type of breathlessness that’s usually associated with air-trapping and chronically low lung function. There’s a huge difference, and thankfully most asthmatics will never experience this second category.

Starting next month ,they (my palliative care docs), wanna put me on a 30 day trial of continuous low dose methadone (Yes, the heroin withdrawal drug). They believe, that having a constant level of opiates in the bloodstream, is more effective in relieving dyspnea, and is better tolerated, than the shorter acting compounded drugs like vicodin (vicodin has tylenol in it).

My biggest concern about taking methadone or any of these morphine-like drugs, is how they will effect my ability to exercise. The experts claim that it might actually improve my exercise tolerance, because I wont “feel” as breathless. We’ll see about that.

Although physicians want to do all they can to help relieve dyspnea in their patients, fear of respiratory depression and criticism by colleagues has discouraged them from using opiates, even in treating those with end-stage disease. Thankfully, that attitude is slowly beginning to change. Opioids are very effective in relieving dyspnea, although the exact mechanism is not understood. Contrary to common belief, this effect does not result through inhibition of respiratory drive. Relief from the “work of breathing” is a function of steady-state opioid levels, much like steady-state opioid levels relieve pain. Inhibition of respiratory drive results primarily from rising opioid serum levels. Studies have demonstrated significant relief of dyspnea from opioids without significant effects on ventilation or pCO2 levels in common therapeutic doses.

For those of you who aren’t quite familiar the terminology, “dyspnea” is the subjective sensation of breathlessness or difficulty in breathing. It’s basically the experience of shortness of breath. Much like physical pain, we all perceive breathing discomfort differently. The way you perceive shortness of breath is probably different than the way I perceive it, and visa versa. Some of us have a higher tolerance for respiratory discomfort , and some lower. A million things can cause dyspnea, including chemical ,neurological and psychological abnormalities, but it’s usually a result of severe lung or heart problems. Dyspnea can me mild or severe. It can be acute ( abrupt ) or chronic ( long standing). Dyspnea is the main cause of suffering in lung disease patients, and is one of the top reasons why people seek emergency room care. Whatever the cause, dyspnea can be difficult to treat and can make your life miserable.

Why did they put ME on opiates in the first place? After all, I’m just a bad asthmatic , right?
Well, basically because we’ve tried everything else.
My lungs are so messed up , that even when my asthma is not flaring, I’m still short of breath. In fact, I’m pretty much short of breath to some degree … all the time. Because I’ve been this way for so long, for the most part it doesn’t bother me that much ….I’m used to it. But, there are other times when my dyspnea , for whatever reason, gets so out of control and so intense that it becomes overwhelming and unbearable. Left unchecked, the resulting stress, anxiety and increased work of breathing that can emerge from these bouts, can actually fuel a full blown asthma exacerbation, leading to an unwanted date with an endotracheal tube.

I still actively practice all the more common treatment strategies, including daily exercise and stress reduction therapy to better manage my dyspnea. And while these more traditional therapies have probably helped me live longer and cope better with my disease, they haven’t alleviated much of the actual suffering. It’s for this reason, and under the guidance of a palliative care specialist, that I choose to take opiate medications and sometimes ativan to manage my dyspnea on a regular basis now.

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