When I heard the news today that there’s a new drug in the pipeline for severe asthma, my jaw dropped.

This is the first time in 58 years of living with this disease, that I actually feel excited about a new medication. Other than the re-formulation of a few bronchodialtors, the mainstay of severe asthma treatment in the last 5O years has pretty much been steroids. Anti Luekotriene drugs like Singulair and the anti IgE med Xolair came out a few years ago, but those medications are usually only effective in allergic type asthma. Dupilumab works in a totally different way. Thank you Dr Wenzel and the folks at Sanofi for giving us some real hope.

Saw this blog post by Bill Swan and liked it so much I just had to re-post it here. Bill provides us with a step by step instruction guide on how to run like a severe asthmatic. ( I think the photo says it all, don’t you?)

Read more about Bill on his blog at Life with Asthma.

I have had a long on-again-off-again relationship with exercise and running.

Despite being told as a child that I would be better off collecting stamps or taking up some other sedentary hobby, my contrarian tendency was to do the things I was told precisely not to do – I played soccer, basketball, softball. After seeing a film about the effect of running on mental health in grade 8 gym class – and my Dad buying himself a pair of the first Nike™ waffle soles (that I promptly commandeered) – I also started running. OK, to be honest to characterize it as running would be a stretch. At least at first.

My lungs are pretty damaged. Without my drug regime, I doubt I would still be around. I’ve been through respiratory failure, awoke in the Cardiac Care Unit and have had more bouts of pneumonia than I care to remember. I was diagnosed with asthma when I was 2, though I am sure that I always had asthma as my Mom tells me that once I was diagnosed and treated for asthma I stopped bawling all the time. When I was young, I remember spending a lot of time glaring at smokers wishing I could “trade” lungs, since they were hell-bent on damaging them on purpose – bastards.

To deal with my asthma, I take 2 inhalations of high-dose Symbicort™ (steroid and long-acting bronchodilator) twice a day, one inhalation of Asthmanex™ (steroid) twice a day, 4 snorts of Nasonex™ (steroid) at night, Singulair™ (anti-allergy) once a day. Before I run I often take a prophylactic dose of Bricanyl™ (short-acting bronchodilator). If I have an exacerbation I take a 5 day course of prednisone (broad-spectrum steroid), and with each bout of pneumonia I roll in expectorant and often a course of antibiotic. Moreover, I have anxiety, high blood pressure and gastrointestinal co-morbidities related to my asthma that I treat successfully as well. I have considered using the biologic Zolair™ and have investigated Bronchial Thermoplasty™ (where the bronchial muscles are “heated” to reduce muscle mass).

So, I am – as they say – heavily medicated (though not in the fun way). I am extremely careful with my triggers. I stay away from environments with pets, mold and mildews (which lead to some people thinking I’m snobbish). We have no carpets or household plants and few fabric drapes. I am fastidious when I travel, including keeping prednisone and antibiotics on hand should I take a turn for the worse when I am in places with iffy health care – like the US.

Yet, with all of this intervention and care I still only have just over 60% lung functionality compared to other people my age, weight, and asthma status. Compared to a healthy individual, I’m lucky if I have 50% functionality, on a good day and fully medicated.

I am sure this is why my Asthma Educator looks at me abashedly and asks “Bill, please don’t take this the wrong way, but are you SURE you run?”

Yes, despite all evidence to the contrary, when the stars align I run 30-50 kilometres a week (this includes dealing with all of the crap other 50 year olds deal with – plantar fasciitis, shin splints, aching knees, weight and ennui). I may not be the fastest runner, but I run dammit.

So, what’s it like to run when your lungs aren’t up to par?

Home-Made Recipe for 1 Severely Asthmatic Runner

1 healthy individual
1 roll medical tape (or duct tape if you are a masochist)
3 really narrow drink straws (not those big McDonald’s straws. A blue whale could breathe freely through those suckers)
A soupçon of gullibility

Apply tape “x’s” to each nostril and the mouth. Carefully insert a straw through each “x.” For the love of Pete, don’t jamb them all the way into your nasal cavity or your epiglottis; Gentle is the word. Carefully practice breathing in through your nose and out through your mouth.

This is important as a lot of people do not understand that one of the characteristics of asthma is that you often have more problems getting the air OUT than IN.

Put on your running gear, tell your partner your route and to come and find you in about 15 minutes.

*If you have actually followed the directions, PLEASE send me a picture. I promise not to post it on Facebook – much

The point here is that you do not have to be an elite athlete to be active (I make no illusions to being an elite athlete – elite regular schmo – but no athlete). No matter your level of infirmity you do have the capacity to – as we say in the Maritimes – Get off yer arse!

I have found a way to work through my limitation – a testament to mother nature over-engineering the human body – and so can you.

Shawn Strachan a severe asthmatic from Cochrane, Alberta with 52% lung capacity runs triathlons all over the world to draw attention to the need for asthmatics to keep active no matter the severity of their disease. He’s not the fastest, but he finishes.

The National Asthma Patient Alliance created Team Asthma to help encourage all asthmatics to get and stay active. We hope to support asthmatics who want to take up this challenge.

But this takes resources, with which you can help now!

Team Asthma will be running teams this year at the Scotiabank Blue Nose Marathon in Halifax, the Tamarack Ottawa Race, the Vancouver Half-Marathon and the Scotiabank Toronto Waterfront Marathon.

My 6-year old daughter Caelin (recently diagnosed with mild asthma) and I are leading Team Asthma for the Blue Nose Marathon Weekend. She will do the youth run and I will take on the 10K. Please sponsor either of us or support Team Asthma directly:

Donate to Caelin

Donate to Bill

Donate to Team Asthma

Keep on Breathing!

(Authored by Bill Swan and republished with permission)

Yesterday I completed my final “test” walk in a series of trial walks that started a month ago to see if training for a future marathon might be doable. The plan was to do the Portland marathon this October ( my 3rd time) and then hopefully obtain a qualifying time to enter Boston in 2014 . By pacing myself, the majority of those walks went OK, it was the respiratory symptoms that followed the majority of them was not OK, or even normal for me. Most of the time these post- walk symptoms are relatively mild, manifesting mainly as dyspnea caused by increased air trapping which usually diminishes overnight. But after Friday’s 6 mile walk I got so tight and progressively short of breath that I thought I might actually end up in the hospital on a ventilator. In addition to the expected air trapping symptoms, were talking bronchospasm, decreased PFs, dropping sats, the works! I’ve spent the last 48 hours doing every I can just to stay out of the hospital, including using an epi-pen, nebbing morphine and albuterol and bolusing with pred. This is not the way training for a sports event should go.

Something else I noticed during this trial, is that my lungs are getting more and more unpredictable in the way they respond to physical exertion now. I can feel fairly decent after doing a hard 10 miler, but then feel like I’m suffocating to death after doing an easy 1 miler. Just another example of the uncertainty Id have to face every time I want to take on a physical challenge. Bottom line, but not surprisingly, is the realization that my lungs are just too messed up and unforgiving now to push forward with a plan A. Even if I were to somehow miraculously make it through to Portland, Id be confronted with the same challenges and risks all over again in preparing for Boston just 6 months later. And for what? another medal? to make myself feel important? to be a role model? Been there done that. If I do another race I want it to be because I can.

While obviously not the outcome I was hoping for , it’s not the end of the world. Ive already proven myself by completing an astonishing 8 full marathons and 12 half marathon, including the most prestigious race in the world, all with in a 4 year period. Few people can say that, and even fewer with an FEV1 as low as mine.
Now, this doesn’t mean that I’m gonna stop training all together. I’m thick skulled and have a short memory. No, there’s still a little something out there to fall back on called a half marathon. Maybe not as impressive as a full 26 miler, but nothing to sneeze at either. A half marathon race is a slightly more tamable creature and is something that I’m now seriously considering if plan A doesn’t work out. While not as daunting as training for a full distance marathon, a 13 mile race is not exactly a walk in the park either( or is it?). It still requires a huge commitment to training, but at least it exposes me to fewer occasions in which to exacerbate my breathing issues. Another nice thing about plan B is that there are lots of half marathons here in California, including the SF and the SJ Rock&Roll locally. And with the money I’d save by not traveling to Portland and Boston, I’d be able to take another Adventure trip somewhere in the fascinating world as early as next year.

( In loving memory of Doug’s Papa Jerry Gagle, a truly gentle, genuine, beautiful person and Doug’s best friend. We both love you very much buddy)

Exposure to this ……
And this….

Is there anything Im not allergic too?

I think I need to live in one of these…

So two hospitalization in just two months has me and my Pulmonologists scratching our heads as to what it is that keeps causes my asthma to spiral out of control so often. As has been the case in so many of these bad flares that Ive had over the past few years since relocating to Crockett, Calif, I didn’t have a cold or lung infection and wasn’t experiencing any abnormal emotional stress that precipitated these attacks. That really only leaves one other type of trigger, namely.. ALLERGIES! Could the fact that I live in the sneezing and watery eyes capital of California have anything to do with it? Could it be that my environment is fueling some of these really bad exacerbations ? Well, it’s sure starting to look that way.

Not so much my indoor environment, though keeping the dust at bay is a never ending battle ( and we won’t even mention my furry friends), but rather my outdoor environment. It appears that I am more allergic to the trees and other greenery that surrounds my home (and basically the entire neighborhood), than I previous thought. Making things worse is the fact that I walk OUTDOORS ( not a fan of indoor health clubs). I live in a Beautiful little town, too bad it’s killing me.

Allergy triggers would sure explain a lot of things, including why I ended up in the hospital after only 3 of the 8 full and 12 half marathons Ive done. If it were just the walking or the exertion that was making me sick, I would end up in the hospital after every race. It turns out that courses of these 3 particular race all had excessive greenery. Ive also had more than one Pulmonologist tell me that because Im exerting myself while doing these long walks that I’m inhaling a lot more allergens and pollutants into my lungs. . Hmmm…maybe there’s something to these theories after all.

Ive had allergies my entire life, most asthmatics do. In fact, up until just recently I carried an epi-pen with me just in case. More times than not though, my body is usually slow to respond to allergens. Unlike most hay fever sufferers, because I dont always get that instant feedback when I’m exposed to certain t (ie, symptoms like acute wheezing, chest tightness, etc), I have a tendency to dismiss or downplay them as primary triggers for my asthma. The only substances that really evoke an immediate and nasty respiratory type response out of me are things like dust, smoke, and strong fragrances. Exposure to tree and grass pollens, dust mites and/or atmospheric conditions such as extreme temperatures and high humidity tend to produce a much slower response in me. Confusing the issue even more, is the fact that I rarely have an increased eosinophil count when Im hospitalized for asthma. Nor is my IgE elevated, both of which are red flags for allergic type asthma. At the same time though, my some of my skin test reactions are off the charts and I usually have pretty enlarged nasal polyps, another sign of alergic asthma. With all these conflicting signals, you can kinda see why Ive discounted the allergy theory for so long. Well, not anymore.

Ah, but as I get older and wiser I’m learning that not every asthmatic responds the same way. High eosinophil counts are usually a result of a MASSIVE allergen exposure. The allergic response in many chronic asthmatics tends to be more insidious in nature, and is not always reflected in elevated blood counts. The allergic response usually manifests itself in the form of gradual, and often prolonged airway inflammation and/or irritation, which can lead to mucus plugging, airway narrowing and air trapping. Sometimes it takes hours or several days for asthma type symptoms to start showing. In a person like myself who already has severely obstructed airways, this can lead to disastrous results.

Interestingly (and despite having normal IgE levels at the time) in 2009 I was placed on Xolair , which is used to treat severe allergic asthma. After receiving 150mg injections every month for a full year, we decided to discontinue it because there was no notable difference in my overall health. Looking back on it now though, my living environment was quite a bit different then. I was doing most of my walking in San Francisco along the waterfront or in the city itself where there are very few trees and grass. Im wondering now if we should re-check my IgE level and maybe try Xolair again. The drug has come down in price, but is still incredibly expensive.

So now that I’m enlightened about all this, what am I gonna do?
Well, in a perfect world Id simply pick up and move to a town with less greenery, or better yet live next to the ocean. Unfortunately, I’ll probably never be in a financial position to do that, so the best I can hope in the meantime is to find a way to adapt and to limit my exposure.

To any sympathetic and wealth philanthropists who might be reading this, if I can’t have a hermetically sealed Bubble to live in, a small beach house, would probably work just as well

In the meantime I’ll….

Take Zyrtec everyday instead of just during the Spring season.
Add a steroid nasal spray.
Possibly re-start on Xolair injections.
Do Nasal washes everyday.( yuk)
Change my walking route to an area where there are fewer trees and grass.( ie the famous bridge walks).
Consider wearing anytime I go outside( yeah, right. )
Not go outside at all on high pollen count days.

Just one of the advantages of being an asthmatic Respiratory Therapist, though the hospital staff might not be so thrilled. They get a little grouchy when the patients start adjusting ventilator settings

Now for the serious educational part:

The rational for using non -invasive bipap therapy during a severe asthma exacerbations is simply to reduce the work of breathing, thereby improving ventilation and hopefully reducing the need for intubation. To demonstrate this point, below are my ABGs( arterial blood gasses) taken before and after a one hour trial of Bipap. In the first set, you can see my PCO2 has climbed from a normal value of 35-40 into the 50′s and my Ph has dropped from a normal of 7.4 to 7.2, indicating impending respiratory failure. In the 2nd set drawn one 1 hour after being on Bipap, you can see that my ABGs improved significantly. My Ph has returned to normal and my PCO2 has dropped to an acceptable level. Had I not been put on Bipap, I probably would’ve needed intubation and ended up on a ventilator. Not cool.

ABGs before being placed on Bipap

ABGs after being on BIpap for one hour

As much as I hate that mask being strapped to my face when I can’t breath, it certainly beats the alternative.

My friend Don is up for a Juno award next month. Couldn’t have happened to a nicer guy. If you haven’t yet, check out his music

2013 has also been a really busy year for friend and bass mentor Rick Shaw. He just completed an 8 show tour in Japan with the Gordon Goodman’s Big Phat Band and is now touring with singing legend, Johnny Mathis.

Thanks guys for providing the world with loads of great music.

For the life of me I can’t figure out why my breathing was so good from those last 2 weeks in January all the way till Feb 3rd.

When I say “good” I don’t mean like a return to normal lung function or even a significant decrease in symptoms, but still what I experienced during those 3 weeks was the closet thing to normal breathing that I can relate too. I seemed to have been less air trapped, hence less short of breath. During that time period I probably used my neb less than 3 times a day, compared to my usual 6 per day. My dyspnea in level, which is usually pretty bad in the evening and nighttime hours, was much better and I actually managed to get some real sleep. At one point my FEV1 hit 50% . That’s the highest it’s been in 10 years!

So what’s the deal here. To what do I owe this temporary, but very much appreciated reprieve? Inquisitive minds need to know. Did it have something to do with the climate? Maybe less allergen or environmental triggers floating around? Was there less stress in my life at the time? ( doubtful on that last point, as I had just been discharged from the hospital.) Was it the recent steroid burst? ( Again doubtful , as I have gone through literally hundreds of steroid courses and never felt that good during one ). I didn’t walk any more or any less than before. Nothing changed in my diet. I’m perplexed.

The only thing I did different during those 3 weeks was take azithromycin ( z-pack) for a dental procedure I had done. I was on them for a period of 10 days. Hmm… could it have been the antibiotics that made my breathing better? After all, there are published studies that indicate a small percentage of severe asthmatics actually do better when on long term Azithromax. So to that end, with wishful thinking and the blessing of both my pulmos I embarked on a trial of Azthro. I loaded up for a week and then began the recommended dose of 250mg every other day. Alas, it wasn’t the magic bullet I was hoping for. 6 weeks into the trial my symptoms are as severe as ever. Ive since decided to stop the trial and am back to square one.

This is so frustrating. What was it that brought about that “good” breathing phase seemingly out of the blue, and why did it end so abruptly? And most importantly, how come I can’t recreate it? Certainly there are cycles of good and bad breathing phases that one experiences with this disease, but they usually follow some sort of a pattern ( I wrote more about a similar phenomena back in 2006). In this instance however, it was just the opposite. Instead of having a few good breathing every 3 weeks or so, this time the good breathing phase lasted a full 3 weeks. I honestly can’t remember a single time in the past 20 years when I had so many consecutive good breathing days in a row.

If it was indeed a decrease in air- trapping that made my breathing so much easier, what was it that caused it, and how was that effect maintained for 3 full weeks? There’s got to be an explanation for all this, I just haven’t figured it out yet. Im sure there are multiple variables at play here, wish I knew the secret combination.

When it rains it pours. Our hearts have never been so broken for so long. Why does this keep happening to the ones that bring us so much joy. It’s barely been 4 weeks since Milo’s passing, and now this morning we had to put to asleep yet another one of out beloved cats. His name was Duke. We’re not sure exactly how old he was , but we had the pleasure of his company for a little more than 12 years. He just showed up at our door one day with a chain around his neck. On the chain there was a tag that said “Duke”, so that’s what we called him.

What made Duke special, was that he was extremely vocal and loving. If you called his name we would respond with a loud and enthusiastic meow. Not just once in a while, but every single time you called his name! He was also a relentless snuggle bug who would curl up with you for hours at a time. Duke was an outdoor cat, but almost every morning he would meow at the back door to get our attention, not for food, but to be picked up and held by my partner Douglas. I’d open the back door to let him in and he would immediately search every room of the house until he found Douglas, and then he would hop onto his lap or jump in bed with him to snuggle . And I don’t mean just run of the mill snuggles, we’re talking up close in your face jowl rubbing, head bumping kind of snuggles. Ive never seen anything quite like it. Even our indoor cats aren’t that affectionate. That cat had a special bond with Douglas that he had with no other human, including myself. Id always joke around with Doug saying how much I thought the Geico Gecko looked and acted like Duke, especially his eyes. Every time the commercial would come on, Id say…Hey look…”Dukes on TV again”

We knew that Duke was getting old and starting to look frail, but we had no idea that he was as sick as he was. Two weeks earlier we had brought him to the vet because we noticed that he was getting increasingly thin and was having a difficult time walking and bending down to drink water. As is usually the case in older cats, they detected was they believed to be a large abdominal tumor, probably a lymphoma. There was basically nothing they could do to make him better. Still grieving over the loss of Milo and not ready to euthanize another pet so quickly, we decided to take him home, put him on steroids, love him as much as we could and hope for a miracle. Sure enough the steroids perked him up little and he even got some of his appetite back. Not surprising though, the positive effects of the drugs gradually wore off and by the end of the 2nd week he was becoming extremely dehydrated and incapacitated could barely get around. It go to the point where we were hand feeding him. He looked like a skeleton. It was obvious that he was slowly withering away and we knew in our hearts that it was time to release him from his failing body. The hardest part for us is that we was so alert and was purring and meowing right up till the very last second.

Ok so Duke was just your average looking tiger-striped brown short haired backyard cat and probably not special to anyone other than the two us, the neighbors who used to feed him and possibly his feline buddies, but I want the world to know that he existed and had purpose and that his presence enriched our lives deeply. He was a wonderful loving little creature and we will never ever forget him or his spirit. I think more than anything I’m going to miss his chattering meows. Funny, as I’m writing this I could swear I heard him meow in the other room. My mind is playing tricks on me.

We will miss you so much. Thank you for sharing your life with us. We love you snuggle bug.

Addendum: The loss of a loved one, human or otherwise, is always painful, but what a lot of people might not realize is that when a person suffers from severe lung disease, grieving can be especially difficult. Overwhelming emotions of sadness and grief can be physically and mentally draining. We know that strong emotions such as stress and anxiety can trigger breathing difficulties in asthmatics, but physical stress can as well. When you’re very short of breath to begin with, something as natural as the act of crying can make your breathing 10 times worse and can even be dangerous. When I experience intense sadness as I have these past few months, I have to actually hold back a lot of my emotions because I simply dont have the breath to cry, which makes me even more frustrated. If I do cry it often throws me into full blown bronchospasm. Sometimes I feel like Im going to explode inside because I can’t release the pressure unless Im having a good breathing day. Just another example of how wonderful this disease is. Can’t even friggin cry when you’re hurting so terribly.

Haven’t trained for or entered any races, or even taken any walks greater than 5 miles in almost 2 years now. However,come rain or shine, crappy breathing or not, I still get out and walk 3 to 4 miles almost every single day.

My main motivation for doing so nowadays, is mostly to preserve what little endurance I still have left and also to break up the monotony of the day. I take further advantage of that time by listening and/or studying a piece of music that I’m trying to learn, and sometimes I use my “walking time” just to free up my mind and get some fresh air. Being a slightly hyperactive person by nature, I get claustrophobic if I’m cooped up indoors for too long.

Because I’m no longer training for races, advance planning of where I’ll be doing the actual walk is not an issue for me anymore. I rarely travel into the city anymore to do those longer walks. Mostly I just walk around the small town I live in. I’m a lot more casual and less regimented now with my walking and how I dress for it. And because I’m no longer racewalking, the type of shoes I wear is less important, though I do try to wear distance appropriate footwear.

Currently Im doing one short walk in the early morning and another one in the afternoon. Each one is appx 1.5 to 2 miles and takes appx 40 minutes to complete, so on a daily basis were talking an hour and 20 minutes of walking. This is about 60% less walking than I was doing just 2 years ago, but still a lot more than even healthy people do.

Pre-medicating, usually with a double dose of nebulized albuterol even when I’m not tight, has become more important than ever now and seems to make a huge difference. Not only because my lungs get tighter much faster now, but also because the neighborhood route where I walk has a pretty steep grade to it. The first 1/4 mile of it is mostly downhill or flat. The next 3/4 miles however are totally uphill, ascending 150 feet during the first half mile of that section and the last 1/4 mile is both up AND down. Even though I’m walking much slower than than I used to ( 17 min/mile pace), the uphill portions of my current route tend to induce a lot more air -trapping in my lungs. Getting my lung maximally dilated prior to the walk, helps reduce the air- trapping and chest tightness significantly. Upon returning home I do another neb treatment.

So there you have it. I guess after doing this for more than 9 years and covering more than 7,000 miles, It’s a hard habit to break. And though Ive declared that I wont be doing anymore marathons, I have been toying with the idea of perhaps doing an easy half marathon somewhere down the road.

Milo 1994-2013

The oldest of our 4 cats who shared his live with us for almost 19 years, was given back to god at 10:10 am February 13th,2013

Milo was a proud and fiercely independent little Persian kitty that we adopted from the SF SPCA in 1996 and became a huge part of our family unit. Milo was an indoor cat and had a full and comfortable life until just the last few weeks when we noticed that his breathing seemed to be very labored when he slept. A visit with several vets revealed that he had a massive tumor of the spleen which had been compressing his lungs and had probably metastasized as well. Because of his advanced age we did not want to put him through the pain and stress of surgery. We decided instead to watch him closely and spend as much time with him as we could until it was time. God only knows how long the cancer had been growing. In retrospect there were signs a full year ago that something wasnt quite right, but given how normal he acted around us we just assumed it was old age.

Despite the horrible discomfort he must have experienced the past few weeks, when he was awake he still went through the motions of eating and drinking, using the litter box, even purring, but when he would lie down to rest his breathing would become very fast and labored. It was then we knew he was suffering terribly. For the next 9 days we spent every waking moment with him, caressing him, loving him, playing with him. We fed him is favorite treats and even took him outdoors for a few minutes everyday to distract him from his pain and labored breathing. Our other Persian cat Winston followed him around constantly and slept next to him everyday, something he’s never done before and something Milo would never have allowed before.

On Wednesday morning as he was waking up, he had an extremely severe bout of respiratory distress which seemed to last 10 minutes. Miraculously it calmed and he was actually able to get up walk around a little and went to the bowl for a few bites of food. It was then that our worse fears came true, we knew it was time to do the unthinkable. We knew that in order to release him of his suffering, that we would have to let him go forever.

As we held him during those final moments in the vets office, I could tell by looking into his eyes that he was tired of this life of pain. It’s almost as if we was giving us permission to proceed and not to worry about him. We told him thank you for being in our lives and that we loved more than he’ll ever know. Less than 2 minute later we was gone. And along with him our hearts. How could a tiny creature like this have such a huge impact on your lives.

The fact that Milo lived 19 years is a pretty amazing in itself. Considering all that he went through in the final months of his life, he must had a tremendous will to live , or didn’t want to leave for fear of letting us down. We are so lucky to have had his companionship for all those years. The amount of joy he brought to our lives is well worth the excruciating pain we are experiencing now.

I will always remember him as a proud kitty. Master of his domain. He would often stand in front me all puffed up staring deeply into my eyes like he was seeking my approval and a good pat on the head and jowl rub. I will miss you so much buddy.

Till we meet again, Farewell little Milo. Nothing can hurt you now. You will always be a part of us and never ever forgotten.

Winston watching over Milo

For those of you facing a similar situation, or are tormented over making the right decision, I highly recommend you read the following chapter from Franklin D Mc Millin’s book “Unlocking the Animal Mind”. I think it may help.

It’s a real pleasure to have my good friend and asthma advocacy partner Kerri MacKay here as my first guest poster. Thank you Kerri!

Steve and Kerri at Ocean Beach!

For as long as I can remember, defining moments in my life have had some sort of musical connection to them. To use two very cool album titles in the same sentence, it’s been about words & sounds (Eric Nicholas), and scars & stories (The Fray) defining various characteristics of and nicely summating my story: I live with a soundtrack–whether it’s the philosophical reflections about a lyric that fits in my life so perfectly within the chapter being written; when my fingertips are all torn up from spending some time with the guitar; or those moments when I’m walking down the street and the perfect song for how I’m feeling in that moment shuffles onto my iPod.

With a skateboard and my shit guitar / I dream all day that they would get me far […] if I had a chance for another try / I wouldn’t change a thing / it’s made me all who I am inside. […] And every day I wake, I tell myself another harmless lie . . . the whole wide world is mine.

Rite of Spring, Angels and Airwaves

Music, like life, is up for interpretation. The person who wrote it may have been going through a completely different experience, but whether it’s a slightly tumultuous piano riff that crescendos into the best part of the song (a la Caves by Jack’s Mannequin), a punchy bass line, a victorious guitar riff or just the right vocal inflection accompanying a set of lyrics that just about makes you freeze . . . Yet, at that moment, days, months, years after it was experienced and then written by the composer . . . you’re stopped dead in your tracks like it was written about you. With a choice whether to move forward with that feeling of epiphany–or to abandon the experience and abandon the moment and continue your life unchanged, without a new sense of understanding of yourself or the world around you. That choice is yours alone.

The same choice comes with the diagnosis of a chronic disease–let it teach you, let it challenge you, let it help you grow . . . or choose to abandon the experience.

There’s a lot that I don’t know / There’s a lot that I’m still learning / When I think I’m letting go / I find my body is still burning / And you hold me down / And you got me living in the past . . .

The Resolution, Jack’s Mannequin

The danger of abandoning the experience is threefold. Physically, untreated, any chronic disease will take a toll on your body and your emotions–no matter how hard you try to deflect reality. Alternately, there is the ability to get stuck in limbo: a place where you simply idle, you do not change, and you do not affect your experience by modifying your perspective–you go through the motions to keep yourself healthy physically, but abandon any emotional connection, not allowing yourself to truly process what you’re feeling. The third is that, without treatment, it is not a case of if things will get worse, but when–and what repercussions this will have on not only you, but also those around you. There is a fine line between keeping healthy distance for purposes of, you know, sanity . . . and ignoring reality. This, and our behaviour in regard to asthma . . . is a choice.

Hey midnight, turn on your lights. / Roll out your stars . . . / I look tired, but I feel wired and my body hums like it’s coming undone . . .

Odette, Matthew Good

There is entirely a place for negativity—for frustration, for anger, to feel that dealing with a chronic disease is unfair. The flip side is not allowing your mind to get stuck there, and channeling those feelings into Good Things and growth. This is where choice comes in: to own your disease through how you interact with your body, to question, to make the active choice to not follow all the rules.

Change starts in your mind / Leave the past behind / Forget everything you know / Make a change . . . let go.

Fear, Creed

And this is where we enter a word that I invented that will probably never make it into even the most liberal of dictionaries. It’s not a diagnosis—it’s a lifestyle. For people with asthma . . . who are badasses—perception changing, world-altering badasses—and therefore do awesome shit.

Badassmatics.

Circumstance does not come with a choice—I don’t have a choice to have asthma. How I reacted to it, felt about it, thought about it—once I realized I completely have the ability to change my own thoughts—was 100% a choice. I can’t change my circumstances—I can change how I respond to them (thank you Jay Greenfeld for that piece of wisdom!). I have a choice to make good choices, and to not only feel as good as possible, but do as much good as possible in spite of it all. That good starts in myself and with myself, hopefully leading through example to encourage a ripple effect—of other people making positive changes and feeling that difference both physically and emotionally.

I’m keeping an eye on the future / An eye on the past / And the present in my pocket, just in case I need a door / […] The ripple effect is too good not to mention / if you’re not affected, you’re not paying attention. / It’s too good, not to have an effect.

Rogues, Incubus

“Your body can only give you what you give it,” is likely one of the most perception-shaking quotes I have heard in relation to health—and I was fortunate to hear it shortly after my asthma diagnosis when I was seventeen. Incredibly simple, but intense enough to light a fire under the perception of what it means in that health is simply not a passive experience—and certainly not so when you are balancing everything that comes with all the “strings attached” to being diagnosed with a chronic disease—but a choice in spite of circumstance.

It’s a new dawn, it’s a new day, it’s a new life . . . for me. And i’m feelin’ good.

Feelin’ Good, Muse

I think part of being a badass[matic] is making a lot of mistakes. Mistakes are awesome pending you climb over them and end up in the right place having learned something. Prior to almost the point of my eighteenth birthday, I could seriously care less what I did regarding my health. I think I was more pissed off than I realized about the asthma thing, and that in itself wasn’t healthy—but not only that, it was that I didn’t make the choices that helped things get any better. Then, something clicked (thank you Epic Steve). I joined a dance class for five months to close off my high-school career, and I realized that exercise didn’t have to be all sports and gym and suck-fest. And I was kind of blown away. At this point, my asthma “control” was nearly nonexistent, but I got up there nearly every morning and tried. I realized that physical activity could be far more than a thing I was ‘supposed’ to do, and be a thing I wanted to do—with the benefit of getting healthier and actually understanding my own body more (seriously, it’s amazing how disconnected your brain can actually be even though you’ve spent your entire life attached to your body). I then morphed into an occasional gym-goer, but more frequently I just dance in my living room when nobody’s home. [Side note: I turned into a mildly-regularly-exercising kinesiology major in the last almost five years since my asthma diagnosis, and the level of “what the actual eff?” in my head is still sometimes so high.]

You should make amends with you / and if only for better health. / But if you really want to live / why not try and make yourself?

Make Yourself, Incubus

Being a badassmatic? It’s beyond a treatment protocol. It’s beyond the inhalers and neb treatments (I’m known for giving nebs The Finger. Yes, that one.), beyond the doctor’s visits and PFT numbers and the stuff you have to do to stay healthy. It’s so far beyond the disease itself and into the realm of choice. It’s a lifestyle.

It’s understanding your disease and what’s going on in your body–choosing how you interact with your body. It’s understanding how you’re feeling about that, and how you can modify that perception to allow you to deal with your asthma effectively—in every way possible. It’s knowing that by putting good things into your body that you’ll get more good out—knowing the effects of nutrition on your immune system, your energy levels, and the growth healing process we’re putting our bodies through simply by existing every day.

It’s knowing yourself and what you want. It’s asking questions, it’s forming an understanding, and sometimes . . . it’s about questioning the choices someone else is making about the thing that you have to live with every day—asthma—and learning what more can be done to make your life better, and making an active choice to create change in your life.

It’s allowing nothing to stand in your way of what you want to accomplish. In reality, asthma is nothing but a six-letter word—letters are arbitrary. Perception is flexible. Make what you want out of those six letters and perhaps let them help explain you . . . but do not let them define you. They’re only as big as you let them be. Choice is as big as you let it be. Life is as big as you let it be.

Badassery? Badassery is as big as you let it be, too.

Like music, it’s about how you choose to interpret it—not about how somebody else thinks you should see life. I see life alive in every way . . . because a badassmatic allows nothing to hold them back.

I still have a hard time believing it, especially the way Ive been feeling this past year, but during my most recent Pulmonary function test a few weeks ago, I blew an incredible FEV1 of 50%!

OK, blowing an FEV1 of only half of normal may not sound like a big deal, but it’s the highest FEV1 Ive achieved on a PFT in nearly 10 years. Actually, I did do a 50% back in 2009 during one of my SARP PFTs, but we were unable to replicate it during the rest of test, so it got averaged into the other numbers and I ended up with a 43%. Like the other, we’re chalking up this most recent aberration to lots and lots of bronchodilators and steroids consumed in the hours and days leading up to the test, which btw was performed on the day I was discharged from the hospital during my most recent stay in December.

Anyway, one of the reasons I decided to devote a blog post to this single PFT number, is because it serves as an important reminder( and one which I often forget), that PFTs dont always correlate with asthma severity and/or symptoms. Airway inflammation is not always reflected in PFT numbers. Though rare, there are some individuals with severe asthma who actually have normal or near normal PFTs in between flares. Additionally, PFTs, especially flow rate readings, are very fleeting and can change from hour to hour. They’re basically a snapshot of what’s happening in the lungs at that the time the test was done. Variability and reliability of PFT results can also be affected by non-respiratory factors, such as patient effort during the test, chest wall and muscle strength, cardiac problems, pain, even anxiety.

Asthmatics such as myself who have terrible baseline PFTs, are usually those who have had the disease continuously for many years have had numerous severe exacerbations and have some degree of airway remodeling and/or lung scarring present. Probably more reliable indicator of small airway obstruction is the FEV25-75 reading, of which mine is only 6-15% of normal , as well as an FEV1/FVC ratio of only 48% . Having said that, Im happy to say that my DLCO is totally normal… actually above normal at 115%, meaning I have no diffusion or oxygenation problems associated with my asthma, unless I’m flaring.

Again, this FEV1 50% reading was probably a fluke, and of course it doesn’t mean that my lung disease is reversing itself, or that I’m any less short of breath, but on a purely emotional level it sure felt good knowing that the continuing downward trend I had expected in my numbers had plateaued and actually went in the other direction for a change…. at least it did for that day.

Alas, since that PFT was done, my FEV1 has gone back down into the high 30′s and low 40′s again. Today it was 41 %. Still better than it was this past summer. I’ll take it!

My journey begins in Winnipeg (my very first time crossing the Canadian border).

Just 2 days earlier there had been a pretty bad snow storm and potential weather delays at the airport were a big concern.Fortunately things worked out and I got there on time without any problems. Within minutes of stepping off the plane I received a Welcome greeting Text on my phone from my friend Kerri. I promptly located the hotel shuttle van and in less than 20 minutes of stepping on Canadian soil for the first time ( or in this case Canadian snow), I was checked in at my hotel. 30 minutes later Ms Lovely (Kerri) knocks on my door bearing a Tupperware container chock full of delicious multicolored mini cupcakes she had made and decorated to the hilt. I could tell that this was not only going to be fun trip, but also a sweet one.

Later that afternoon we caught a city bus to the local Subway sandwich shop and brought back some food to the hotel. Mind you,Im from the SF bay area where it never snows, so just going cross town to grab something to eat was quite an adventure. There was a good foot of snow on the ground and trekking through it was a workout. Of course it didn’t phase Kerri in the least bit.

The following morning I caught a bus in front of the hotel and took it downtown to meet Kerri. I struck up a conversation with the driver who was originally from England and whose wife was actually born in Churchill. Knowing I was a tourist, he eagerly kept me entertained with facts and figures about Winnipeg and the history of various buildings along the bus route.
Kerri met me at the bus stop downtown where we were shortly met by her Mom who was nice enough to take a break from work just to give us a ride to the train station. Once there I picked up my tickets, dropped off my luggage and with 2 hours to spare, we set off on foot where Kerri gave me a tour of the Forks area of town. Lots of quaint shops , museums and landscapes. First time Ive ever seen a frozen river. At the mall I ended by buying some snacks for the long train ride, including some of the most flavorful local organic apples Ive ever tasted. At one of the stores we ran into Kerri’s Grandparents. Her grandmother made me a batch of chocolate chip cookies for the trip. How sweet is that! I think the MacKay clan is trying to make me fat.

The train ride from Winnipeg to Churchill is a slow 2 day ride. I don’t do well sleeping in a train seat , so I booked a sleeping berth for the trip. It turned out to be pretty cozy. There were only 2 other parties who had sleeping accommodations, Persa a Nurse practitioner from Alberta Canada and her niece Breanne a high school student. There was another interesting person named Doug on the train who was a probation officer supervisor for all of Manitoba, but he got off shortly after I got on.

I couldn’t have ask for better roomies on a train. Persa worked who as a Nurse practitioner way up near the north pole, was super friendly and had a real enthusiasm for traveling to far out places. Just by coincidence the 3 of us were booked on the same bear tour in Churchill. Oh, did I mention, they had a shower on the train? We’re talking a full on, hot shower room . They even provided fresh towels and soap daily.

The trip from Winnipeg to Churchill took about 2 days, so I was prepared for periods of extreme boredom, but what I didnt know before booking the ticket , was that there would be no dining car and that there would be a 5 hour layover in Thompson. Correction, there was a dining dining car, but there was no cook. The only food they offered was microwaved TV dinners and few other snack items. Apparently there were not enough passengers on this run to justify it. There were only 22 people on the entire train and that included 8 staff members, so really only 14 passengers!! That had to have been a big time money looser for the rail line. As far as the unexpected layover in Thompson, most everyone on board the train took cabs from the Thompson rail station to the downtown area to do a little sightseeing. I went into town as well, but I walked. Here’s a snippet of that walk.

While the train ride was boring at times, the winter scenery was pretty spectacular. Imagine being all tucked in to a warm and cozy swaying bed with this view.

39 hours later and 1 hour ahead of schedule, the train finally arrived in Churchill. Did I mention there was a blizzard going on?

The outside temp was -12 C,. but with sustained winds of 40mph it felt like -30.
I asked the station clerk for directions to my hotel and he said it was only a block away and no need to take a cab. Bundling up as best I could and hauling my suitcase behind me, I headed outside. OMG , Ive never been so cold in my life. It was so windy that the snow ( or ice crystals) were coming at me sideways and I could barely move. As I made it across the street someone with the Churchill logo on their truck stopped and offered me a ride. 2 minutes later I was at my hotel, the Tundra Inn, a very modern but cozy and warm hotel.

In the lobby you could see that there were film crews and photographers preparing to head out for the days shoot. Apparently if you need a polar bear in your movie or are doing a documentary about them, Churchill is the place you come. But it ‘s not always a sure thing. Some of these crews had been there several days and had not seen a single bear. To make things worse there was a blizzard blowing through which polar bears dont like. In all I counted film crews from at least 3 different production companies, including one from Italy and one from Australia. One of the movies called “Midnight Sun” is supposed to be in theaters next year. Anyway, while waiting for my room to be cleaned, my train friends Persa and Breanne popped by the hotel and picked me up in an SUV they had rented and we set out to see the local sites. Here’s a clip of what we saw that morning..

OK, if you’ve never been on a Tundra buggy, it’s quite an experience. These things are like tanks and probably as comfortable too. They don’t have tracks like a tank, but they do have 6 wheel drive and can move over almost any surface. It can get quite bumpy, and spending 8 hours on these things can make you feel a little sea sick.

OK, by now Im sure you’re tired of reading about all the little stuff. How about some

BEARS!!!

We slowly followed the frozen shoreline of Hudson bay and were given tips on how to spot polar bears from a distant, which is harder than it seems again est a vast white background. About an hour out on the ice and no bear to be seen. It was late in the season and most of the bears had already migrated north, so there was no guarantee wed see anything. Then with tour guide, driver and the tourists all using binoculars, someone spotted our first bear. He was about 300 hundred yards away sleeping near the water. This is what we saw ( it’s kinda bumpy)

After this first sighting people started getting more excited and enthusiastic about the prospect of seeing more bears. And see more bears we did. Myself and a young couple I met from England ( Alex and Sarah) decided to go outside on the back of the buggy to see if we could get a better look at what appeared to be a bear way out on the ice. I have to apologize in advance for the crappy camera work. Let me apologize in advance for the crappy camera work. Im not a professional photographers the others on the buggy. We’re talking a hundred camera with a dinky lens. The footage is very shaky at times, as I was trying to use both my still camera and the video camera at the same time. That, plus my hands were totally numb and there was a lot of commotion and excitement going on when the bears came close. Still, I think I captured the moments that counted the most.

After that close encounter, the sightings became more frequent. Just a few minutes later we spotted this magnificent creature. Easily a thousand pound male, just strolling the ice. ( accidentally duplicated the footage during the last 30 seconds of clip)

Then there was this curious little guy…

We had now been on the buggy for 7 hours and it was time to head back. Here are some misc still photos taken during that day.

Today is Saturday, my last day in Churchill. My flight wasn’t scheduled to leave until 6pm, so I did a little souvenir
shopping and took one more walk around town and recorded this..

At 5 pm Belina,the Inn the keeper where I was staying, gave me a lift to the Churchill Airport and an hour later I was on a plane headed back to Winnipeg. One thing about the Churchill airport that kind of surprised me, is that there is no security check. In fact, they don’t even require ID to get on the plane. You just show up with a paid reservation and get on the plane.
This is also the first time I ever flown on a propeller plane or a plane that had to be De-iced before taking off. And believe it or not, this tiny airline actually serviced a full lunch. ( well, for $900 for a 2 hour flight, I guess they better).

Ok, so Im sitting on the plane when a tall lanky guy I had seen earlier in the airport carrying a guitar case asks if he can take the seat next to me. Turns out he’s a singer songwriter who had just performed in Churchill. While there he also got to see a couple polar bears and a fox which is pretty rare. This guys name btw is Don Amero. Don’s a really sweet down to earth family guy, a talented artist and according to my friend Kerri , very popular in Canada. After listening to his music I can see why. Don also does a lot of mentoring to high school students, which I thought was really cool. Anyway, we talked non stop for almost 3 hours about everything under the sun. He just came out with a new CD and was very excited about an upcoming showcase he was going to be doing in New York next year. (Here’s Don’s complete CD release concert). Upon arrival at the airport he was greeted by his wife whom I also got to meet briefly. He was gonna autograph one of his CDs for me, but there was a mix up with his luggage and couldn’t get me one. I later went online and downloaded a copy of it. It’s good, it’s really good. I like Don because he’s real and he’s honest. I think that will take his career along way. I wish him the very best and will be the first one in line when he plays here in the bay area.

I spent that Saturday night at a hotel located at the Winnipeg airport. Sunday morning Kerri came by again with yet another box of grandma’s home made cookies. We then headed to the terminal where I checked my bags for the flight back to the US and then we hung out at the Tim Hortons( my first time) plotting out our next adventure. The time flew by way too fast and before I knew it, it was time to say good bye.

I was a little worried that I wouldn’t haven’t enough time to make my 45 minute connection at Ohare, but my flight arrived there early and I got to the other gate ( a half mile away) with time to spare ( Im still a fast walker). Despite the weather, all of my flights and train connections on this trip were on time or even early. I think that’s a first for me.

Well Churchill sure didn’t disappoint. In all, I got to see 14 bears, 3 of them up close..real close. From those majestic four legged creatures to all the wonderful 2 legged ones I met along the way, this adventure definitely ranks up there as most memorable, satisfying and educational ones Ive ever embarked upon. Canada, from what little I saw, is a beautiful country and so are the people who live in it. Everyone I had contact with was friendly and polite, even the customs officer was nice..lol

And for those of you suffering with severe breathing problems, I hope this trip inspires you to create or own travel adventure or whatever passion you might have. Don’t let your health stop you from living. If I can do it, anyone can

It’s almost 2013 and I just realized I really haven’t posted a breathing status update in almost a year.

Probably the biggest change that I’m noticing, is that my dyspnea is getting more pronounced and more constant. Where I used get 8 or so “good” breathing hours a day, Im down now to less than half that. Most of this dyspnea I attribute to air-trapping, but Im sure there’s some bronchospasm thrown in there as well. Because of this, my nebulizer usage has gone through the roof. On an average day I’m now requiring a minimum of 6 neb treatments, and sometimes as many as 10. In about half of these treatments I’m doubling the amount of albuterol. Of course, the need for around- the- clock nebs makes it almost impossible to get a restful sleep. Im averaging less than 5 hours per night now.

Also been experiencing a lot more abdominal bloating, which when combined with lung air-trapping is not a good feeling. Ironically, the nebs treatments are probably making the bloating worse , as one tends to swallow more a lot of air during a neb treatment. For the longest time I thought it was my diet that was causing the bloating, but now I believe its just a side effect of my lung disease. Still, to reduce it somewhat Ive given up eating cereal and most bread products.

On the exercise front, no weight training, marathons or racwalking anymore, but I still walk 3 miles almost everyday in 2 segments. The biggest difference now, is that even these shorter casual walks are difficult for me. Im short of breath during every walk now. The fact that Im doing these walks on an incline probably doesn’t help, but the town I live in isnt flat.

On the clinical front, I have to have another chest CT in a couple weeks to see if a spot detected on an earlier scan is growing. The radiologist didnt seem to think that it was big deal, but since Im at higher risk for lung tumors they want to keep an eye on it. I’m also scheduled for another round of full PFTs. My most recent baseline FEV1 was 29%. My next appt with the transplant folks will probably be in January. If I don’t have any life threatening flares before then, they’ll probably change my follow visits to every 6 months.

On a slightly more positive note, as bad as Ive been feeling lately, I haven’t been hospitalized in nearly 4 months. Not sure why, but my guess is that while my dyspnea is worse, the actual asthma component ( ie the bronchospastic element) of my disease has been fairly stable. My pfs haven’t dipped in to the red zone for months. Also at play I’m sure is the fact that Im tired of hospitals.

But despite my not so great health, I refuse to live life in a bubble. I’m very excited about my upcoming trip to Churchill. Though I admit, I’m not sure how I’m gonna handle the whole medication/ neb thing. Because I’m relying much more now on neb treatments to keep me going, I’ll probably have use it a lot during the trip. I think my breathing will be OK on the plane and trains, its the Tundra buggy portion of the trip that has me a little concerned. A 7 hour stretch is a long time to spend in such a small confined space out in the middle of nowhere when you have breathing problems. Hopefully, I’ll be so distracted by all the polar bear sightings, that I’ll forget any breathing difficulties I might have at the time. Luckily they have a restroom on board where I can sneak a neb treatment if I need it. I’ll also have my epi with me if I get super tight.

Take Care all!

This one doesn’t involve marathon walking , or music, or sightseeing through an ancient city. Nope, this adventure is totally different. I’m going on a Polar Bear expedition in Churchill Manitoba in north eastern Canada. Okay, so maybe the word expedition is a slight exaggeration. I guess a more appropriate description would be “Tour”, but the bottom line is that I’m going out onto the frozen subarctic tundra on one of these…

…………in search of these magnificent creatures.

The idea of doing this came to me a few years ago after watching a documentary all about getting up close and personal with the Polar Bears. (With Churchill being the Polar Bear capital of the world, the film might very well have been filmed there.) I remember I was struck by how regular people could actually go on these type of arctic wildlife safaris. Well, I had totally forgotten about it until just recently when I saw yet another documentary on the same topic. It looked wonderful. I said to myself, this is something I gotta do if I can. Ive always been attracted to desolate and extreme places with extreme climates, like area 51 in the Nevada desert (remember the ET Midnight marathon I did there?) or cold places like Antarctica. I’ll obviously never get to go to Antarctica, but North Canada is doable. I’m very excited and just hoping I can stay reasonably healthy for the next couple weeks.

The adventure begins on Nov 12th. I’m flying from San Francisco to Winnipeg. From there I continue the journey by train a thousand miles north to the town of Churchill.(The train portion takes about 2 days.) Once in Churchill I’ll be spending 2 of the days on a tundra buggy in search of Polar bears and other wildlife. The tundra buggies are wonderful because they allow for an up close and personal view of the bears in their natural habitat, and of course protect the observers from becoming bear food. With a little luck I might also get to see the Northern lights.

Interesting factoid: Polar bears often roam into town, so locals don’t lock their vehicles or houses, thereby giving people a place to escape to if confronted by a bear. This is one of the reasons that they recommend not walking around the parameter of the town in hopes of spotting a bear. Bears that do come into town are trapped and put in a huge holding facility called the Polar Bear jail (or more politically correctly called ‘the polar bear holding area). Interesting, it’s the only air conditioned building in Churchill. They are held there until the ice has formed then released miles away. They have no human contact while there and are just fed enough hay to keep them alive – Not very pleasant for the bears, but better than being shot as they were years ago. They even now have a fully enclosed rubbish dump inside a giant shed to stop the bears from scavenging.

Not sure how my lungs are gonna react on this trip, but I’m hoping for the best. Generally I do OK in colder dry climates. It’s the warm humid ones that make me sick. I had originally planned to take the train both ways to and from Winnipeg and Churchill, but after giving it more thought, I decided it would probably be better to spend a little more money and fly back from Churchill to Winnipeg rather than be on a crowded train for 2 additional days, not to mention seeing the same scenery again. For piece of mind I also purchased an emergency medical air evacuation policy. Churchill is pretty isolated, the nearest town with a hospital is 300 miles away. So it’s probably best to be prepared for every eventuality.

As an added bonus, since I have to spend the night in Winnipeg on both legs of my trip, I also get to meet up again with my friend Kerri. She’s promised to play local tour guide for me…very cool.

Hopefully the next time I post, I’ll have some Polar Bear picture to share:-)

Me and Rick Sept 22, 2012

A couple of Saturdays ago I had the pleasure of meeting one of my favorite bassists of all time, Rick Shaw. Rick has worked with all kinds of recording artists and is also the bassist for Gordon Goodwin’s Big Phat Band, my favorite jazz band.
As a novice bass player, it’s difficult to express what a thrill it was to meet and chat with a Master musician, not to mention one of my idols. Rick is a genius on the acoustic upright) bass. He’s not too shabby on the electric either. If the instrument has fat strings on it , he can probably play it. His forte is jazz, but I swear the guy can do it all. He’s also a much in demand music Professor and session player in Southern California.

I first discovered Rick’s bass playing and Gordon Goodwin’s music through the SmartMusic program, a really cool interactive music instruction software program used by a lot of High School and College music departments. Gordon writes some killer stuff and his band is absolutely phenomenal.The brass, lead guitar and rhythm sections in particular are just outstanding. The more of their music I heard, the more I liked it. Anyway, I was so impressed I wrote to Rick telling him how much I loved the band and especially his bass playing. I also included a video of myself playing one of their compositions. I didn’t really expect a reply, but sure enough he wrote back. Not only did he critique my playing, but he also sent me some walking bass line sheet music to practice with. Very cool of him to do that.

Anyway, a couple months went by and I heard that the Phat Band was scheduled to play at the Monterey Jazz Festival, which is fairly close to where I live, so just for fun I wrote to Rick again telling him that I had planned on attending the show and jokingly asked him if I could get a backstage pass. He wrote back saying that he didn’t have control over those kinda of things, but said that he had relatives who lived in a city close to me and that if I was going to be around on Saturday morning that maybe he could swing by and we could do a little bass playing. I thought to myself, yeah right! I should be so lucky that one of my favorite musicians is going to magically appear at my home and play bass with me.

Thinking that he was just trying to be nice ( after all, he knew about my lung issues, right?), I politely said, “sure” I’ll be home and pretty much dismissed the thought. Well, Saturday morning had come and gone, and no Rick. Im thinking, “well at least it was a nice gesture on his part”. So, I’m about to call it a day, when at 3′o clock guess who calls me? Yup, it’s Rick! He actually apologized for running late, because he had stayed awake most of the night to watch all the other acts after the followed the Phat bands performance at the jazz festival the night before. So 2 hours go by and sure enough he pulls up in his truck and says..”How’s it going Steve”! I was truly beside myself ( I hope I didn’t come across too much like a gushy fan).

After meeting me in the town center, we headed over to a local eatery and proceeded to talk about nothing except bass for 2 hours. I even got to pick his brain about certain playing techniques I had always wondered about. Upon leaving the restaurant we headed to our individual cars and did some show and tell with each others guitars right there in the parking lot. How cool is that! You should see his custom MTD. Oh wait, here’s a picture.

My friends, Rick is a master bassist who’s been playing for more than 40 years, it’s in his blood and obviously a life long passion. But I think what impressed me more was is super laid back attitude. He’s probably one of the nicest guys Ive ever met. Not pretentious or holier than thou because of his profession or celebrity status. Just a polite, intelligent easy going friendly guy, who went out of his way to meet a fellow bass player, student and fan. His way of giving back I guess. I’m so freaking lucky to have met him. I’m planning to get together with Rick early next year for some one on one lessons. Can’t wait to learn from the Master. Thank You Rick!!

If you’re curious about the videos I sent to Rick (Yo Tannenbuam, Hit the Ground Running and High Maintenance ) or about my bass playing progress, check out my new Bass Playing page . Right now I don’t have plans to play in a band or with other musicians, but that could change :-]

Earlier this week I had my long awaited lung transplant evaluation at Stanford University. Dr Weill and the other team members were awesome. I learned a lot and am satisfied with the outcome. In fact I think everyone involved in my care to this point has learned something. Very few asthmatics are ever referred for transplant, so I’m sure this was new territory for the evaluators as well.

So , what was the decision?

Because my diagnosis is asthma, the main question the transplant evaluators had to grapple was this; if I didn’t receive a transplant now, what is the likelihood that my next severe exacerbation would kill me? After pouring through my medical records and spending nearly 3 hours interviewing me, it was finally decided that because I had not suffered what they consider a “near fatal” asthma episode in the last 13 months, that it would be in my best interest to hold off on transplant for now and in the interim be followed in the pre-transplant program where they would re-evaluate me every 3-6 months. It’s their believe (and I totally agree) that though I have a life long history of severe and frequent exacerbations and intubations, the majority of them Ive somehow managed to turn around rapidly without any lasting complications. Therefore its reasonable to assume, that at least for now, the odds of me surviving the next “big one” are in my favor. That being the case, transplant now would be premature and might actually shorten my life. If however my lung function continues to decline or I don’t do so well with the next “big one”, then transplant option tilts back in my favor.

I should point out, that the term “Near Fatal Attack” is open to interpretation, but in this case I think they mean a severe exacerbation resulting in resp failure, impending or actual resp arrest and/or cardiac arrest, intubation, complications on ventilator, difficulty weaning from the ventilator… that sort of thing. All of these things have happened to me many times, but not in the past year or so. I think one of the reasons for that (knock on wood), is because I’m getting much better at identifying potential life threatening exacerbations before they get out of control and then seeking hospital treatment sooner rather than later.

So anyway, my immediate response to their decision was actually a sigh of relief. Knowing that I wont have to face transplant in my immediate future feels like a huge weight has been lifted . At the same time though, I find myself in kind of a mental fog. I don’t know if it’s due to some deep seated anxiety I have about facing my own mortality, or if it’s just fatigue from lack of sleep and stress over the the evaluation, but whatever it is I feel like Ive been put through the ringer. I hate to use a sports metaphor, but it’s kind of like that feeling you get after completing your first marathon. You’ve just tackled one of the most difficult physical and mental challenges of your life and you’re left wondering, what’s next? Where do I go from here? What’s the next big challenge for me ? How can anything top this? Sounds crazy I know, but finding out that you’re not ready for transplant, in a strange way kind of invalidates the way you perceive the severity of your illness. You start thinking to yourself, well maybe Im not that sick as I thought I was if I didn’t qualify for transplant. Of course the rational part of me knows that’s not the case at all, but still, it leaves you wondering about the what comes next, if anything. Am I gonna feel like this every time I get re-evaluated?

So I guess what Ive taken away from this experience, is that in order to be considered for lung transplant, the team has to be convinced that you will die within a year if you don’t have one. Plain and simple. But of course with asthma that’s very difficult to say. I also found out, much to my surprise, that quality of life issues such as worsening dyspnea plays virtually no role in determining eligibility for transplant. It’s all about the hard numbers and whether they believe that you will live longer with transplant, than without it. And just a bit of sad irony, out of the small handful of asthmatic candidates that this team had knowledge of, most of them died of asthma attacks while on the waiting list. Ive read about a few other individuals who survived the surgery, but survived less than 3 years. On the positive side, out of those asthmatics who were successfully transplanted, none of them had a re-occurrence of asthma. That to me is totally amazing. Can you imagine waking up without asthma? The thought blows my mind.

Finally for my friend Steve Ferkau, I just wanna say thanks for always emphasizing the positive aspects of transplant. Per my own transplant evaluation physician “don’t believe half of what you read on the web about transplant statistics”. According to him, a lot of the neg stuff simply isn’t true or is often exaggerated. There are of course side effects to all the anti rejection drugs, but the fact is, almost all transplant recipients experience a dramatic improvement in their breathing and with their lives in general. The improvement in lung function however, is for a finite amount of time. But isn’t that the way life is anyway?

Of course, none of us would have a 2nd chance at all if it weren’t for organ donors. Thank you.

It’s been way too long since I posted to my blog. Been doing most of my updating via my asthma support group on Facebook.

So anyways, after 6 months of going around and around with the insurance company, they have finally agreed to pay for a full lung transplant evaluation. My appointment is scheduled for August 15th at Stanford. Not sure if Stanford will accept me right away as a transplant candidate ( I think I’m probably still at least 1-2 years out), but at least I’m in the system now and can have regular follow ups with them if need be.

There were several reasons we were having a hard time getting the insurance company to pay for this. The biggest hang up stemmed from the fact that the medical group that I belong to does not have a transplant evaluation program, hence I had to go “Out-of Network”. Most insurance companies will only cover out-of network consult expenses if you are doing so for a 2nd opinion. In my case, I was seeking a 1st opinion, but couldn’t get that opinion “within” my own medical group. Secondly, there’s a huge difference between a regular Pulmonologist and lung transplant Pulmonologist. In the insurance companies eyes, I already have a “Pulmonologist”, so why would I need to see another one out-of network for a transplant eval. Finally, there’s this kinda of vague unwritten rule that asthma is not an accepted qualifying diagnosis for lung transplant surgery, when indeed it is. Traditionally, asthma is not considered an ultimately fatal disease.. though often times it is. Very few asthmatics have ever been or ever will be transplanted, because unlike a patient with CF or PHT, it’s difficult to tell how long a severe asthmatic will live if they don’t get a transplant. Asthma for the most part, is controllable in which most of it’s sufferers live fairly normal lives. But then there are the weirdos like me out there whose lungs have been so scarred by years and years of severe exacerbations, that nothing really works anymore and we slowly ( or quickly) suffocate to death. I think in those rare situations, transplant should be an option.

Another consideration is the financial impact on everyone involved. My medical bills total nearly 3/4s of a million dollars a year, and it keeps going up. With the average cost of lung transplant at one million dollars plus, the insurance company would actually save money for every year that I survive after transplant.

In the end , and with lots of letter writing and recommendations from all my wonderful physicians, including Dr Sally Wenzel, we were able to convince the insurance company that a lung transplant evaluation at this time was indeed a reasonable request. Ultimately, it’s up to the lung transplant team at whatever institution I end up going through to determine whether or not I will eventually be a suitable candidate for transplant and/or whether the benefits would outweigh the risks of this last resort treatment option. If so, I hope the insurance company won’t add to the stress by making me jump through too many more hurdles. We’ll see what happens.

As a side note, I was just discharged on Friday from my 106th hospitalization for asthma and my FEV1 now ranges from 26-33%, a 10% drop in 2 years.

Over the years Ive built up a pretty loyal following of friends who are interested in what Ive been up to and how I’m doing health wise , but the bulk of visitors to this blog still get here while searching for answers to asthma related questions or topics. The following (in order of popularity) are the top 3 internet search phrases that bring people to my blog. If you’re one of those people, let me help make your life easier by answering those questions for you right now.

1) Recovering from a Severe asthma Exacerbation

Ive written extensively on this topic from personal experience, but this is probably my favorite post on the subject.
The Recuperative phases of a severe asthma exacerbation

2) Can you have a normal O2 sat during an asthma flare?

This is another question that pops all the time, not only in the Google searches that brings people to this blog, but also in my asthma support groups and in private emails. So here’s the short answer:
YES , you most certainly can have a normal or near normal oxygen saturation during an asthma flare up. Asthma is a disease of the airways, NOT the alveoli ( air sacs) where oxygen exchange takes place. In fact, if you’re O2 saturation is low during an attack, this can be an ominous sign. O2 saturation is usually the last things to drop during an asthma flare. Having said that an asthmatic who had a low O2 sat is probably sicker than someone who has a higher sat. Regardless of someones O2 sat, an even more important indicator of respiratory failure is an elevated CO2 level( carbon dioxide). When in doubt, an ABG should be obtained. Here’s an article I wrote about oximeters and O2 sats
Btw, if you’re searching for answers to this question, you’re probably either a physician or a healthcare worker who has encountered a patient like this, OR, you’re an asthmatic who is trying to justify whether they are sick enough to warrant hospital care. Am I right?

3) Hospital Bills for Asthma

With over 100 hospitalizations for asthma during my life time, I know a thing or two about hospital bills. Thankfully Ive been fortunate enough to have fairly good medical insurance that covers most of my medical expenses. Asthma, especially severe asthma, is an extremely expensive disease and accounts for a large chunk of this countries healthcare costs.
The typical 7-10 day hospital for me averages about $180,000. That’s enough to by a small house here in the SF bay area. An ICU bed alone can cost $22,000 per DAY! and that doesn’t include any of the medications or treatments. In the past 3 years alone, my medical bills have exceeded $1 million. This is just one of the many posts Ive written about the topic. It’s getting expensive to stay alive

So what brings you here today?

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