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

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

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

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

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

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

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

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

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

Last week after finding out just how damaged my lungs really are, the only thing going through my head was..WHY? All of the assumptions I had made about my asthma throughout the years, suddenly didn’t seem to make sense anymore. I was beginning to wonder if I really ever had asthma at all? Maybe I just thought it was asthma, when it was actually something totally different? These are the crazy things that were going through my head. I had a ton of questions I desperately needed answered , and since she knows my lungs inside out ( literally) , who better to ask than Dr Wenzel.

Well, not only did she take the time to answer all of my questions, but the answers she gave ….made total sense.
I’m posting some of that discussion here, because I think it might help others out there who are in a similar situation. At the very least, it makes a great refresher course for the RT’s out there.

[Steve ] Because my larger airways are so scarred and stiff, does that mean that they ‘re incapable of clamping up or spasming or narrowing? [Dr. Wenzel]  No, not completely, but certainly will be harder to spasm.

[Steve] If that’s the case, and my larger airways are not clamping down, when I have an exacerbation, is it the smaller airways that are reacting? [Dr.Wenzel] Yes, they most certainly are likely to be and because it is also likely that they are narrower to begin with, just a little spasm COULD effect it a lot.

[Steve] I thought there was no smooth muscle in the smaller airways? [Dr.Wenzel] There IS smooth muscle in your small airways. But, you probably ALSO have “Scarring”/fibrosis in those airways which probably leaves them normally much narrower than normal small airways. Just a little mucus or spasm and they will close.

[Steve] You mentioned earlier that I might not actually have chronic inflammation of my airways.  If there’s no inflammatory process going on, or no smooth muscle spasm going on, what causes the obstruction or air flow limitation when I flare-up? [Dr.Wenzel]  See answers above. In addition, you likely have “loss of alveolar-airway attachments”. The alveolar septae attach to the outside of the small airways and actually help to “tether” the airway open. When those get destroyed, as we think they do in SEVERE asthma, that tendency to PULL the airway open from the outside is lost.

If my airways are non twitchy or non-reactive because they are so stiff,  how is it that I can have severe asthma exacerbations that land me in the hospital and sometimes even on a ventilator? [Dr. Wenzel] Your lungs (I think) are very stiff and when you have an attack your work of breathing becomes VERY BIG. That is why your CO2 increases. In addition, you did have a couple of attacks where your lactate levels did increase… that also goes along with your breathing VERY HARD and causing your muscles to start breaking down.

[Steve] If my airways are so damaged, why do I respond, and even partially reverse, with certain bronchodilators and steroids.[Dr. Wenzel] Although you likely don’t have much inflammation, the little that is there (plus some edema) reverses with the steroids. The bronchodilators likely just relax your smooth muscle enough to have an effect, albeit not a big one!

[Steve] Do I have any elements of COPD or Emphysema? [Dr.Wenzel] NO you don’t have COPD OR EMPHYSEMA!!!!

[Steve]Isn’t that generally the course that asthma takes over the long term? [Sally] NO!!! ASTHMA ALMOST NEVER BECOMES EMPHYSEMA…unless you smoke!

[Steve] Regarding my FEV1s, I think the reason I got a 50% reading that one time, was because I exhaled less forcefully during that particular manover ( I was still sleepy from the bronchoscopy). For some reason, when I blast out as hard and as fast as I can, I get slightly lower numbers. ( I think because my airways are narrowing too fast?) [Sally] YES, that is most certainly the case. There is a FORCED vital capacity and a SLOW vital capacity (meaning just that, that you exhale SLOWLY from Total lung capacity to residual volume) It IS likely that your SMALL AIRWAYS do collapse when you exhale fast due to the external force on the airway being greater than the force holding them open during expiration (when you have negative pressures in the airways themselves) .

And finally, there was this….
[Steve] BTW…..The wager we had regarding me being able to ever blow a 50% FEV1 as a result of using Qvar , was that you would get a new set of golf clubs. [Sally]  hee-heee… I expect only the finest clubs when I get you there!

……………….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.

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 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.

In case you haven’t heard, I’ve been working the past few months with the folks over at Medpedia, the worlds largest health and information encyclopedia project.

Well, I’m excited to announce that they’ve just expanded their platform by including a “News and Analysis”, a Q&A section and an “Alerts” feature. Read the latest press release here. Also in the works, and one of my favorites features, is a “Clinical Trials” search engine… It’s of the best Ive ever used.

You can find me in hanging out in the COPD/Asthma community and can find my blog feed in the new ” News and Analysis ” section.

I didn’t even know that this was out there until an RT blogger friend on Facebook told me. Mike and I are on page 61 of the current issue of the “AARC Times”.

The Times is a publication of the American Assoc for Respiratory Care, a national organization that thousands of Respiratory Therapists belong to. They also put out a science journal called “Respiratory Care” in which I was featured back in 2008.

Click the cover to see the article

In much the same way that you would keep a diary of your asthma symptoms, I came up with the concept of posting my daily breathing parameters as a way of letting others out there know, (i.e. my doctors, family and fellow asthmatics), on how my lungs are doing on any particular day. I often forget though, that while most chronic lungers know what this stuff means, a lot of people who visit my blog probably don’t.  So, if anyone is interested, here’s a little explanation of what all that junk means…. I hope it’s not too confusing.

There are 4 major components to my daily breathing stats:  a Peak flow measurement , an FEV1 measurement a Breathing Update ( which is basically a subjective description of how I’m breathing on that particular day, and lastly, a section labeled Todays Fitness Activity where I jot down what, if any, exercise I did for that day. (Ive used the above links for general definitions of what Peak Flows and FEV1 measurements are )

Peak Flows : I do my peak flow measurements several times throughout the day on a digital peak flow meter, which also measures the FEV1. Those readings are then stored on a chip and uploaded to a database which can then be used to plot out trends and other useful info. I designed the peak flow meter graphic on my blog to correspond with my actual Green-Yellow-Red breathing zones , the same you would see on a real peak flow meter.

FEV1 : As far as pulmonary function terms go, FEV1 ( which stand for Forced Expiratory Volume in 1 second) is one of the most useful measurements in quantifying the severity of airway obstruction in a person with COPD or asthma. It’s usually expressed as a percent of normal, but can also be expressed as an actual volume. In the example shown in the graphic above, my FEV1 was 35% of predicted ( based on my height weight ,age etc ). The actual exhaled volume measured to come up with this percentage was 1.05 liters. This means, that blowing out as fast as I could, I was only able to exhale 1 liter of air from my lungs in the first one second, or appx 35% of what I should have been able to do if I was healthy. Since my FEV1 hovers in the 30-40% range, my disease severity is considered to be in the severe to very severe category.

Breathing update: Because I am a real person and not a machine, the way I “feel”, doesn’t always jive with what the numbers say I should feel like. Everybody perceives breathing discomfort differently. What I might perceive as mild respiratory distress, you might perceive as major distress, and visa versa. For that reason, Ive included a subjective description of my symptoms… or lack of.

Todays Fitness Activity: Finally, because this is after all… a fitness/asthma blog, I wanted to place to record my physical fitness activity. This is where I usually input what kind of exercise I did ( or did not do ) on a particular day. As far as my fitness and /or racewalking goes, all the miles I walk are represented by the little odometers you see just below the header of the blog. These are not estimates, they are the actual number of miles Ive walked and are taken from my Garmin Forerunner GPS.

Check out Roxylns report about the Slacker half marathon/relay/4m run in Colorado. Boy, those mountains sure look beautiful don’t they?

What blows me away, is that this race STARTS at an elevation of 10,600 ft….thats 2 miles up! These two never cease to amaze me.

If you get a chance, read Mike McBrides story over at COPD International, and what it took for him to make it the finish line at the Boston marathon. Pretty amazing stuff… but then again, he’s a pretty amazing person! (that’s my head in back of Mike)

You can see more of Mikes Boston Marathon race photos on his Facebook page.

Fellow blogger and lung challenged marathoner featured on the CBS evening news.

Be sure to check out his blog @ Live to run, run to live

I just wanted to take up a little bit of cyberspace to honor the passing of two people who touched my life in one way or another, and to extend my condolences to the families they left behind.
One of them was a friend and fellow lung blogger , the other was the loved one of a dear friend.

First, to my friend John Kirty who founded some of the UKs premier COPD websites………. “ Breathless with COPD .” John passed away a few weeks ago from the disease he knew would eventually kill him….COPD !
I never met John in person , but we corresponded with each other on a regular basis and became quite good friends. We shared a lot of our experiences in dealing with lung disease, and I think I even wrote a personal article about asthma for his website. He wanted to make sure that he had every aspect of lung disease was covered , and he preferred that people who contributed to his website, wrote from personal experience.
We was very passionate in his crusade to get the word out about COPD in the UK , and the importance of educating the public about this disease. He accomplished amazing things and helped countless others deal with their own disease before his finally took him. I’ll miss John, he had a great spirit.

Second, to my best friend Brandon, who’s dear Grandmother passed away just a couple of days ago from the very same disease. I never met her in person either, but her passing effects me as well, because she was an important part of Brandons life, and Brandon is like a brother to me.

Though they were quite a bit older than I am, I can still relate to a lot of what they probably dealt with on a daily basis. Unlike other, more scary sounding diseases, COPD/Emphysema/Chronic Asthma are insidious diseases that take their sweet time killing you.

We can stomp out this mostly preventable disease by getting rid of the things that cause is it in the first place…..Cigarettes, Air pollution and Ignorance.