breathinstephen.com » Shortness of Breath http://breathinstephen.com Diary of a severely asthmatic wannabe endurance athlete Fri, 30 Jul 2010 23:37:33 +0000 en hourly 1 http://wordpress.org/?v=3.0.1 Double Whammy Asthma http://breathinstephen.com/double-whammy-asthma/ http://breathinstephen.com/double-whammy-asthma/#comments Thu, 15 Jul 2010 15:52:23 +0000 Stephen http://breathinstephen.com/?p=14772 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/or inflamed airways , 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. Basically, I have no reserve left. The inside of my air passages are so small 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

]]> http://breathinstephen.com/double-whammy-asthma/feed/ 0 Annual Asthma Report Card http://breathinstephen.com/annual-asthma-report-card/ http://breathinstephen.com/annual-asthma-report-card/#comments Tue, 29 Jun 2010 14:45:10 +0000 Stephen http://breathinstephen.com/?p=15009

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.
    New Treatment Options

  • Bronchial Thermoplasty is no longer an option for me. My asthma is too severe, my lungs are too scarred. (* 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)

]]> http://breathinstephen.com/annual-asthma-report-card/feed/ 5 Is too much of a good thing, bad? http://breathinstephen.com/is-too-much-of-a-good-thing-bad/ http://breathinstephen.com/is-too-much-of-a-good-thing-bad/#comments Thu, 10 Jun 2010 15:38:53 +0000 Stephen http://breathinstephen.com/?p=14132 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.

(Was finishing this Marathon worth the the nightmare that followed?)

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 do it. But, out of the 19 races Ive completed in the past 5 years, only 2 of those landed me in the hospital. And don’t forget, non-asthmatics end up in hospitals too from “over-doing it” too.

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.

]]> http://breathinstephen.com/is-too-much-of-a-good-thing-bad/feed/ 2 Lessons learned from Boston/ http://breathinstephen.com/lessons-learned-from-boston/ http://breathinstephen.com/lessons-learned-from-boston/#comments Thu, 06 May 2010 18:55:55 +0000 Stephen http://breathinstephen.com/?p=12991 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.

]]> http://breathinstephen.com/lessons-learned-from-boston/feed/ 1 Behind that finish line smile http://breathinstephen.com/behind-that-finish-line-smile/ http://breathinstephen.com/behind-that-finish-line-smile/#comments Tue, 27 Apr 2010 17:27:42 +0000 Stephen http://breathinstephen.com/?p=12742 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 Knocked down, but not defeated 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
me in the hospital

arterial line

(Arterial Line)

cardiac monitor

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 I still have it ! 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 Gotta whole lot a walking to do 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 Recovery progress note 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 #97 , misinformation and a virus from Hell 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.

Here’s a clip my camera-happy partner took. They were in the process of weaning me off the ventilator and just about to take the ET tube out.

About 1 hour after that video was taken, 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. Eveyone 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.

So, what was all this rudeness and attitude I was detecting from some of the RTs and some of the doctors? Well , it turns out that some of the ICU doctors were concerned about my tolerance for opiates. The fact that I was requesting Fentanyl and Dilaudid to ease my breathlessness was apparently a red-flag to them. Despite the fact that my personal pulmonlogist’s condone the use of opiates to treat severe breathlessness, it’s still not a widely accepted practice in the ICU. For many critical care doctors and respiratory therapists, if you’re taking opiates, you either have an addiction to them, or you have psychosomatic illness. In either case, you are definitely treated differently. You’re basically treated like a psych patient instead of a medical patient. In my case , neither of their assumptions were true. The fact is, I only take opiates ( or request them) when the work of breathing becomes overwhelming to me. The breathlessness that I experience is caused by my narrowing airways during an attack. It’s this breathlessness that causes my anxiety, not the other other way around. And that’s the part that people have a hard time accepting.

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. I’m am however, not too happy with the way I was spoken to by some of the other staff, especially the RTs . There seems to be this weird vibe I get from other Respiratory Therapists when they find out that I’m a Therapist myself. Either they like me right off the bat or they are intimidated by me… I’m not sure what’s up with that. I was also made to feel by some of the physicians, that I somehow brought this exacerbation on myself by over -reacting to my own dyspnea. That simply wasn’t the case. I’m pretty sure it was the flu that triggered this event, not anxiety. Besides, I think it would be pretty hard to go into full blown clinical respiratory failure, just from anxiety alone.

Bottom line…Much like 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 going to happen. Evidence based medicine is here to stay.

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/ 26 Your mileage may vary 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.

You might like these posts as well:

]]> http://breathinstephen.com/your-mileage-may-very/feed/ 9 A physicians perspective on dysnea and opiates 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 Opiates, Dyspnea and Me 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.

methadone 002

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.

]]> http://breathinstephen.com/opiates-dyspnea-and-me/feed/ 6 The SARP experience http://breathinstephen.com/the-sarp-experience/ http://breathinstephen.com/the-sarp-experience/#comments Sun, 22 Nov 2009 18:42:37 +0000 Stephen http://breathinstephen.com/?p=9283
Welcome to Pittsburgh, Pennsylvania for the Severe Asthma Research Program

SARP 064SARP 023SARP 022
(I just noticed what it says on the pillow)

Well, the trip was a success and the project went off without a hitch. However, the results that emerged from some of the studies they did on me , are not so good.

First , the good news…..

I finally got to meet Dr. Sally Wenzel (up close and personal you might say, considering she analyzed my DNA and probed around inside my lungs). It’s difficult for me to find just the right adjectives to describe how I feel about her, so I’ll just say … I love this women! She’s like my pulmonary physician soul mate. I admire her, not only because she’s an awesome Pulmonologist and research scientist, but mainly because of her fiery personality and the passion she has in trying to understand asthmatics and what makes us tick. And get this….she’s a good listener too! She actually cares enough about what you have to say, that she takes the time to listen. Imagine that.

I think Sally (Dr Wenzel) probably knows more about asthma pathology and the personalities of asthmatics in general, than any non-asthmatic person Ive ever met. It’s absolutely uncanny the things she knows about our disease and how we behave and live. She understands things about asthmatics that they don’t teach you in medical school. Things that you would only know by interviewing thousands of us and immersing yourself in the severe asthma culture. I could spend literally days just talking with her about this subject. We seem to teach each other. I am so lucky that I was given the opportunity to hook up with her. I think we will be friends for a long time.

Me and Sally

The accolades don’t stop with Dr Wenzel, there were dozens of other wonderful people involved in this study as well. Here are just a few that Id like to mention by name and position.

Erin———–SARP research coordinator extraordinaire.
Cathrine RN—-Dr Wenzel’s assistant and other right hand
Mat tech——Very cool PFT tech.
Celo tech—–Just one of many super cool people on the bronch team
Trish RN——-A special Nurse. She actually called in on her day off to see how I was doing.
Lindsey RN—–Probably the sweetest Nurse Ive had the pleasure of meeting
Chuck RN——They don’t get better than this “young man”.
Rose RN——-Kind, Kind, Kind!
Michelle RN—-A Super Nurse.

To the above people , Id just like to say Thank You!
In all the years that Ive been in and out of various hospitals and clinics, Ive never come a cross a better team of compassionate and caring medical professionals like those associated with the SARP study, especially the people who took care of me in the Translational Research Care Unit at UMPC after my bronchoscopy. Kudo’s to you guys!

As for the SARP study itself, well, it’s probably the best coordinated and well thought out research experience Ive ever been a part of. With so many ancillary departments involved, like Nuclear Medicine, Pulmonary Functions and Diagnostics , it’s amazing how smooth the whole system runs. Everything is coordinated and timed down to the minute. In the bronchoscopy room, they actually had a group of lab personnel standing by in their running shoes, so that they could literally run the tissue samples over to the lab the moment they they were removed from my body. This method ensures that the samples will be ultra fresh. (I think).

Btw, if you’re not familiar with this part of the Country, the University of Pittsburgh and it’s affiliated medical schools ,hospitals and clinics, is massive in size. More like a small city, I counted at least 4 city blocks of medical buildings 2 and 3 deep. Some the size of mini skyscrapers, all connected through a series of enclosed pedestrian bridges. Pretty neat since it snows here in the winter.

Here’s an abbreviated version of my actual testing itinerary:

Wednesday Afternoon: Completed a ton of questionnaires,did a verbal interview, and did pre&post bronchodilator spirometry, sputum induction attempt.
Thursday: Allergy skin testing (scratch test, not sub q), Full PFT ( lung volumes) pre&post bronchodilator.
Friday: Bronchoscopy prep, ( ie pre-medications and neb treatments), then nasal brushing, then the actual bronchoscopy with brushings and biopsy, but no lavage because of the potential side effects, more pfts
Friday Evening-Saturday,:Monitored in the hospital overnight.

As with any long distance trip , I didn’t eat or sleep very well and I’m totally worn out, but the effort of getting here to Pittsburgh to do this study was totally worth it. Definitively a positive experience and I would gladly return again if asked.

(Matthew, myself and Erin in the PFT lab)
SARP 082

(Chuck and Trish, two of the best nurses in the world)
SARP 086SARP 102

Look at all the blood they took from me
SARP 085
(And check out this reaction I had to Grass allergen compared to tree allergen,which is the little dot to the left.)
SARP 057

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Now for the not so good news….

Because this was the first time Ive ever had a bronchoscopy, it’s really the first time anyone has ever gotten a close-up look at the inside of my lungs. And what Dr Wenzel saw down there, wasn’t good. What she saw was lung anatomy that had undergone extensive remodeling. My airways appeared very scarred, stiff and fibrotic in nature…. seems my disease is much more advanced than previously thought. She actually found it quite amazing that I was still able to function as well as I do, let alone still alive. What was baffling to me, is that she couldn’t find any physical evidence of air-trapping or any of the other tell tale signs of COPD or emphysema that I often thought I had. It will be a few more weeks before they’ll have a final report, as they sent bits and pieces of my lung tissue and blood samples to various university labs for analysis, but suffice it to say, my long term survival isn’t looking too rosy right now.

( here’s a photo taken looking down into my left lower lung lobe)

SARP 107

They recommended that I seriously consider lung transplant surgery somewhere down the road. We all agreed that I’m not even close to that point right now, but that when the time comes, I shouldn’t procrastinate, as the waiting time for new lungs can take up to 3 years (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still relatively good(probably from all the aerobic exercise I do), and I’m still able to exercise, though that probably won’t be the case for very much longer.

Who knows, maybe someday I’ll be able to RUN the Boston marathon … instead of walking it!

Update as of 12-15-2009: Results from the computerized quantitative lung scans, did indeed show significant air trapping.

]]> http://breathinstephen.com/the-sarp-experience/feed/ 18 Darn Dyspnea Dilemma ( Part 1) http://breathinstephen.com/darn-dyspnea-dilemma-part-1/ http://breathinstephen.com/darn-dyspnea-dilemma-part-1/#comments Sat, 14 Nov 2009 17:21:43 +0000 Stephen http://breathinstephen.com/?p=9104 ……………….Try saying that 5 times really fast.

Before reading this post, you might find it useful to read the first two of paragraphs in the “My Asthma” section of my blog. This will give you a little background as to why my dyspnea (shortness of breath) is so difficult to manage. Along those same lines, Rick over at the Respiratory Therapy Cave, does a great job of explaining how asthma can sometimes turn into COPD.

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On Thursday I had my first appointment at this new service called “Symptom Management” . The clinic is basically an extension of the Palliative Care dept over at the UCSF Mt Zion campus. Rather than end-of-life care, this particular specialty focuses on treating the symptoms that cause suffering, i.e. breathing problems, pain, fatigue, stress, etc, regardless of the prognosis. I was referred there for my chronic and worsening dyspnea. Don’t get me wrong, I’m not giving up on traditional asthma care, but at the same time I don’t want to fool myself. I know that this disease will eventually kill me . In the meantime, I wanna stay not only as physically active as possible, but ALSO as comfortable as possible. Which for me means breathing easier.

Most of my dyspnea (the sensation of breathlessness), stems from a condition called air-trapping. Pretty much the hallmark of obstructive lung diseases ( COPD, emyphysema and sometimes severe asthma), air- trapping occurs when airway obstruction due to chronic inflammation and/or loss of elasticity, causes air to become trapped in the lungs during exhalation. In other words…. I can’t exhale completely!
For an example of what air-trapping feels like. Take a full normal breath in, then try to exhale it out through a tiny straw (something like a coffee stirrer). See how long you can keep that up. You now have a sense of just how hard the work of breathing becomes for someone who has air-trapping . This is what my breathing feels like on a daily basis.

Things get even worse when my airways start getting twitchy, because then, in addition to the air-trapping symptoms, I also have to deal with my smaller airways closing up (bronchospasm). Having both of these 2 distinct symptoms at the same time becomes very troublesome, because it’s often difficult to tell which is causing which. Dyspnea associated with air trapping can most definitely make you feel uncomfortable, but the dyspnea that is caused by sudden or severe bronchospasm, can be potentially fatal.
In any case, the bottom line , is that dyspnea causes a lot of suffering and can make your life absolutely miserable.

For the past few years Ive been involved in several pulmonary rehab classes and research studies where they show you different techniques to help control your dyspnea. Some of what they teach helps, but most of these classes are geared towards people with COPD and Emphysema where having reactive airways ( ie bronchospasm) is usually not an issue. There are very few resources out there specifically designed to help chronic severe asthmatics deal with the complexities of the disease and type of breathlessness they experience. The only thing that’s really helped me so far, is a combination of relaxation techniques, anti-anxiety meds ( ativan) and mild opiates.

So anyways back to Thursday’s appt,

The symptom management doctor (who was really cool by the way) and I, both agreed that while my disease is pretty severe, that my quality of life is still quite good and that I should continue on with my current asthma action plan…even if it calls for future intubations! As far as my dyspnea goes, he recommended that I increase my vicodin dose to at least 4 times a day for better nighttime coverage. If that doesn’t work, he wants to try me on methadone ( yup, the drug heroin addicts use when detoxing ). I told him I would think about it, but I also made it clear that I didn’t want to take any medications that would effect my ability to exercise.
We also discussed “advance directives” and what would I want done ( or not done) , if I became critically ill and not able to communicate. For me this is mostly as issue of how long I would want to be on a ventilator, if there was no hope of recovering.

Im glad I went to this appointment. I think I came away a little less apprehensive about the whole issue of palliative care and what it implies. Anything that helps reduce the suffering that goes along with chronic disease ,is certainly worth considering as a treatment option.

In part two, I’ll talk about the impact that dyspnea and air-trapping have on my ability to exercise. For me, that’s the real dilemma.

]]> http://breathinstephen.com/darn-dyspnea-dilemma-part-1/feed/ 2 The nights are the worse. http://breathinstephen.com/the-nights-are-the-worse/ http://breathinstephen.com/the-nights-are-the-worse/#comments Thu, 05 Nov 2009 14:21:33 +0000 Stephen http://breathinstephen.com/?p=8874

Ever notice the time stamp on many of my blog entries? I usually compose and publish them in the early morning hours…sometimes way before dawn. You know why? Because I’m usually awake at 3 or 4 in the morning. And why am I up that early? Because Ive usually had a bad night of breathing and have to get out of bed just so I can breath.

I lead a double life. A mild to moderate asthmatic by day and a severe one by night . Starting around 6pm everyday, almost like clockwork, it’s as if someone came along and turned my bad breathing switch to the “on” position. Out of the blue, my peak flows will drop by as much as 1/3 , and as the evening progresses, so will my breathing discomfort. By the time 9 pm rolls around, I’m usually so uncomfortable, that I’ll have to down a little Ativan just to take the edge off. The drug doesn’t do anything for your breathing per se, it works by mellowing you out to the point where you basically don’t give a s**t that you’re short of breath. If the ativan doesn’t cut it , sometimes I’ll call on the big boys for help….the opiates. I hate taking narcotics for my breathing, because while they sometimes help, they also have a lot of side effects and can be very addictive.

I don’t wanna wave any red flags or sound overly dramatic, but there are times, especially during the evening hours, that my breathing gets so uncomfortable, I just want it all to end. I try to remain as calm as possible and do all the things that you’re supposed to do when your dyspnea gets outta control, but most of these stress relieving techniques, rarely work for me when my lungs get extra tight. Instead, I’ll usually go outside and sit on the front porch where there’s sometimes a breeze, and just tough it out the best I can. It’s during times like this , when all I can think of….. is not wanting to suffer with this disease anymore. It changes my personality and puts me in foul angry mood.

So why the huge daytime- to- nighttime swings? At first I thought it might have something to do with the time of day that I take my asthma meds. But thats unlikely, because I divide all of my meds into equal doses throughout the day to ensure more uniform coverage. My doctors thought that maybe I was having some sort of obstructive sleep apnea thing , but my sleep studies all came back totally negative. Then there’s the exercise issue, could too much exercise during the day make me feel like crap at night? Possibly, but again, the findings aren’t consistent. On the weekends when I generally don’t exercise, I still have the same nighttime breathing problems that I do on the days where I do exercise…sometimes even worse.

A lot of people will read this and assume that my asthma is simply not well controlled , and will recommend that I increase my bronchodilator use and/or steroid intake. The problem is, I’m already on maximal dosages of everything! , except for steroids in pill form, which for me, is not an option. My primary care doc recently recommended that I start taking a mild opiate, like vicodin, just before bedtime to see if that would quell my dyspnea enough to catch some sleep. Unfortunately, vicodin wires me.

Whether it’s full on bronchospasm or just air-trapping that brings on this distress, these bouts happen with such regularity now, that I don’t look forward to nice relaxing evenings anymore. In fact, I dread them. And except for an occasional night time stroll to take my mind off it, you’ll never see me out in public after dark.

I found this interesting article in the Chest Journal about this very same phenomena, titled “The Diurnal Rhythm of Asthma“.

OK, We can’t always have cheerful posts. I try my best to poke fun and put a positive spin on all things asthma, but lets face it, this disease sucks and can really dampen your spirits. Next week I have an appt with the Palliative care dept at UCSF, to see if they have any NEW advice to offer me, in dealing with my chronic dyspnea.

In the interest of being a responsible blogger, I must point out, that the use of opiates to treat dyspnea is usually reserved for people with terminal or end stage disease. It’s primary use is to end suffering.  Many pulmonologists would strongly discourage their asthmatic patients from taking such drugs, as they can also dangerously slow your breathing.

]]> http://breathinstephen.com/the-nights-are-the-worse/feed/ 15 Laying low, but staying busy http://breathinstephen.com/laying-low-but-staying-busy/ http://breathinstephen.com/laying-low-but-staying-busy/#comments Sun, 18 Oct 2009 13:00:11 +0000 Stephen http://breathinstephen.com/?p=8433 Nothing really interesting going on since I got out of the hospital. Though Ive taken a couple of short slow walks, overall Ive been trying to let my lungs heal as much as possible before jumping back into a physical fitness regimen full time. Been spending a lot of this post hospital recovery time doing non physical activities, including some asthma advocacy and research stuff. Keeping mentally busy, helps me cope with my breathlessness and the not so pleasant symptoms of prednisone withdrawal. The downtime has also allowed me to play catch up on some personal stuff.

Next Friday, Saturday and Sunday will hopefully, be a little more exciting and a little more normal for me. I’m supposed be going down to Solana beach ( near San Diego) for Dave’s advanced racewalking clinic. Ive been really run down lately from the steroid taper and its an awful long drive (450 mile each way), but I’m hoping that I’ll feel well enough by then to go.

If I do go, it will be mainly to hang out with other racewalkers and to meet some of the super stars of the sport. Three time Olympian, Philip Dun and two time Olympian Tim Seaman just to name a few, will be there coaching. Of course Dave Mc Govern , who’s a legend himself, will be running the whole show. My lungs are way too messed up to participate in much of the actual training, but sometimes just watching the elite walkers walk, and/or having my own racewalking form critiqued by them, provides me an adequate level of learning. Most of all though, I go to these weekend clinics because I have a passion for the sport and for the crazy people who engage in it.

In the coming weeks I have a ton of the usual medical appointments, but also a referral to a brand new service called “Symptom Management”. This new clinic is an off-chute of the Palliative care program over at UCSF. I’m going primarily, to see if there are any new therapies or strategies out there that can help me with my worsening dyspnea. To my knowledge, I’ll be the first asthmatic to receive treatment at this new clinic. I’ll be blogging more about the topic of palliative care in a future post.

Sunday was the Nike Womens Marathon. The last few miles of the marathon course passes by my old neighborhood at Ocean Beach in the outer Sunset. I know several people who are doing this years race. I hope they all had a great time!

]]> http://breathinstephen.com/laying-low-but-staying-busy/feed/ 4 Brief race update. http://breathinstephen.com/brief-race-update/ http://breathinstephen.com/brief-race-update/#comments Mon, 05 Oct 2009 12:35:20 +0000 Stephen http://breathinstephen.com/?p=8099
SJM

Had a great time and a stronger than expected finish at yesterday race. My final race results aren’t in yet due to a technical glitch, but I think I finished in about 3:07 , which is much faster than I anticipated and probably why I’m having problems today.

I felt fine immediately after the race, but as I was driving home, I could feel myself getting increasingly tighter and short of breath. By the time I made it home 2 hours later, my peak flows had fallen from 350 to 190 and I was tight as a drum.
I ended up staying awake all last night taking nebs treatments every hour with only minimal relief. Earlier this morning I bumped up my pred to 60mg, but they haven’t kicked in yet, or I’m not reacting to them

My doctor wants me to go to the hospital, but I’m really not in the mood to be tortured right now. I’m sore enough as it is..I can barely walk. I did however, promise her that I’d go in if things didn’t turn around by later today.

Bottom line, I might have exacerbated myself by over-doing it at yesterdays race. I shouldn’t have tried to racewalk the entire 13 mile distance , but I was feeling pretty good at the time and just couldn’t resist. It could have been that I had an exacerbation brewing and didn’t know it ( happens all the time to me). Exerting myself hard for 3 hours my have pushed me over the edge..Who know really knows what the trigger was.

I’ll have a proper race report up in a few days ( if I’m not in the hospital). Hope everyone else did well at their respective races!

PS…Check this out…what an amazing runner!

California’s fastest half-marathon lived up to its billing Sunday as American Meb Keflezighi set a new U.S. 20k record and bettered his personal best by 25 seconds winning the Rock ‘n’ Roll Half Marathon in a time of 1:01:00. Keflezighi’s 20k split of 57:52 broke Ryan Hall’s standing 20K record of 57:54 set in 2006.

RNRSJ09-Lester-34

]]> http://breathinstephen.com/brief-race-update/feed/ 5 SARP podcast http://breathinstephen.com/sarp-podcast/ http://breathinstephen.com/sarp-podcast/#comments Thu, 24 Sep 2009 14:53:29 +0000 Stephen http://breathinstephen.com/?p=7664 In case you didn’t get a chance to read the SARP‘s study on asthma titled “Lung Function in Adults with Stable but Severe asthma”, here’s a postcast where they interview Ronald Sorkness, a physiologist at the University of Wisconsin and the lead author of the study.

Dr Sorkness does a great job of explaining the basics of asthma as well as the research the SARP is doing, in trying to find out what makes the severe form of the disease different from the milder forms. This is the same SARP study that I will be participating in later this year. Listen here

]]> http://breathinstephen.com/sarp-podcast/feed/ 1 Asthma and marathon training updates http://breathinstephen.com/asthma-and-marathon-training-updates/ http://breathinstephen.com/asthma-and-marathon-training-updates/#comments Fri, 11 Sep 2009 13:40:24 +0000 Stephen http://breathinstephen.com/?p=7507 It’s generally been a rough couple of months on the asthma front. This disease has been kicking my butt. Seems like Ive been sick more often than not. A couple weeks ago I started flaring again pretty severely, and as a result, had to up my prednisone to 50mg for a few days. The prednisone did it’s job this time and kept me out of the hospital, but weaning back down was really tough. I always have a difficult time tapering down below 25mg…. my peak flows bottom out and my symptoms come back with a vengeance. I probably wean too fast, but I know my body, and I would rather risk rebounding and breath crumby for a few days, then to stay on the higher doses and suffer the side effect of the prednisone itself.

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

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

24_911Candle

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