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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Incarcerations

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

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

Treatment Plans
• My Asthma action plan and medication list are pretty much unchanged, except that I take methadone (10mg) every evening now.

New Treatment Options
• Bronchial Thermoplasty is no longer an option for me. My asthma is too severe, my lungs are too scarred. (* Speaking of Bronchial Thermoplasty, this is one of better articles Ive read on the subject. It’s objective, factual and well written)
• I’m waiting for clinical trials to begin ( hopefully by this time next year) on some new Th2 (IL-4/IL-13) blocking drugs.

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

For 5 years now, I’ve been heralding the benefits of daily exercise in people who have severe lung disease. That message is plastered all over this blog, and I believe is the reason that Ive lived so long. But wait, just as with every other facet of this frustrating disease, there’s a catch 22.
While there’s no argument that exercise can make a huge difference in the lives of people suffering from lung disease, Ive long suspected that too much exercise also carries with it, the potential for some not so pleasant side effects. Namely, dynamic hyperinflation, aka…. air trapping.

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

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

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

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

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

Just a year ago I was routinely hitting 370- 380 on the peak flow meter, representing the upper end of my green zone. Well, looks like those days are over.

Though Ive been breathing pretty decent lately with no major flares, on a good day Ive only been hitting 310-320, maybe 330 on a stellar day. In fact, I haven’t been able to top 330 in over 8 months now, which is a little discouraging.

I’m not sure if this drop in my maximum peak flows numbers( personal best ) represents an overall decline in my lung function, or if it’s just that my larger airways are getting stiffer , but in order for my peak flow numbers to have continued relevancy, I had to recalibrate my breathing zones. ( If not, Id be in the yellow zone ALL the time) My personal best is now 330 instead of 380.

Here are my new re-calculated breathing zones:

Rick over at the Respiratory Cave wrote an excellent post about peak flows. As he points out, one should never rely solely on their peak flow reading to assess their breathing status. The only reason I do peak flow measurements at all , is because I sometimes have a blunted perception of my own dyspnea and can’t always tell when I’m getting tight. The peak flow meter gives me a visual clue and provides me with an actual measurement of my lung function.

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

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

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

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

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

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

(My Hannibal Lecter look before Intubation)

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

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

About 1 hour after that video was taken, I was extubated and talking up a storm …or should I say cuzzing up a storm. Why was I not kept down longer? Why didn’t they use propofol to sedate me. Why were the RTs being so rude to me this time?

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

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

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

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

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

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

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

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

Dont get me wrong, I’m grateful, and for the most part , satisfied with the medical care I received during this hospital stay. There were a lot of good things that happened as well. For example, for the first time ever, the doctors actually granted my request to not exceed 60 mg per day of Solumedrol or prednisone, which really helped. I’m am however, not too happy with the way I was spoken to by some of the other staff, especially the RTs . There seems to be this weird vibe I get from other Respiratory Therapists when they find out that I’m a Therapist myself. Either they like me right off the bat or they are intimidated by me… I’m not sure what’s up with that. I was also made to feel by some of the physicians, that I somehow brought this exacerbation on myself by over -reacting to my own dyspnea. That simply wasn’t the case. I’m pretty sure it was the flu that triggered this event, not anxiety. Besides, I think it would be pretty hard to go into full blown clinical respiratory failure, just from anxiety alone.

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

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

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

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

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

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

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

Be sure to check out the Happy Hospitalist blog.

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

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.

I had been feeling really crumby most of that weekend prior. My dyspnea was increasing and my peak flows were gradually trending downward. By Sunday evening it was pretty evident that this flare-up was getting worse , not better. I bolused myself with 60mg prednisone and decided I would try to tough it out another 24 hours in order to give the steroids a chance to kick in.

On Monday morning I woke up lethargic and more breathless than the night before. My peak flows were now below 200 (my red-zone) and the neb treatments weren’t helping anymore. By early that afternoon I was starting to get really uncomfortable and fidgety ( this is usually a sure sign that my CO2 is rising), so I decided to call it day and headed to the hospital. At 2 pm my partner dropped me off in front of UCSF Emergency room . The next time I saw him, was 24 hours later after waking up on a ventilator.

We’ll start the gore fest with a little footage I took with my phone while I was in the ER. My Hannibal Lecter look (as Dave McGovern, my racewalking coach, so kindly puts it). It’s actually called Bipap, which is basically a machine that pushes air into your lungs and then holds that pressure in your airways through out the breathing cycle. The Bipap wasn’t cutting it though, and 8 hours later I ended up on a Ventilator.

Rewind to Monday afternoon: I high tail it to the UCSF Emergency (my home away from home) where they proceed to give me the usual continuous Albuterol nebs at 20 mg/hr along with Bipap set at 10/5. While there I received additional IV steroids, Mag Sulfate and a host of other asthma remedies. The first ABG results came back marginal , with subsequent gases getting gradually worse .My oxygen saturation was OK , but my CO2 was starting to climb. After a 6 hour stint in the ER, I was assessed by the ICU medical team and immediately transferred to the new 13th floor medical ICU , where they continued me on the Bipap, this time adding Heliox. They attempted multiple times to insert an arterial line in my wrists , but were unsuccessful. For the time being they would monitor my respiratory status using other means.

Over the next few hours, I was asked repeatedly by the doctors, if I thought I was tiring out ( something they always ask ), and each time I would respond to the negative, telling them, that at least for the time being, I felt like I was holding my own and did not want to be intubated. 6 hours later, despite being on continuous albuterol and bipap support, I was starting to poop out and finally caved in to their request. I was intubated at 2:30 am Tuesday morning.

The next thing I remember ( which turned out to be 14 hours later), was waking up with a tube shoved down my throat, gasping for air!
I have never experienced that degree of suffocation in my life. I was attached to the ventilator,yet..I couldn’t breath. Ive been intubated and ventilated many many times for severe asthma, but usually they keep me asleep for a couple days until the attack subsides. This was the first time Ive actually woken up on the ventilator during the peak of an attack. For the first time in a long time, I thought I was actually going to die. I remember hearing them saying ” you need to relax” ..and I can remember thinking..” you guys are going to kill me” … ” I can’t breath” . I thought something was wrong with the ventilator, but it turns out that it was my lungs that were all messed up.

My response to treatment, thus far, seemed to be making a lot of the doctors nervous. There was pandemonium in the room with doctors rushing in and out and nurses trying frantically to calm me down so that I wouldn’t self extubate. They finally gave a me a pen and paper on a clipboard to communicate with. I kept writing..” I can’t breath” . On more than one occasion, the feeling of suffocation got so bad ,that I had to disconnect myself from the ventilator just to get a breath of fresh air. Of course, all the alarms went off and RT got really upset with me.

The secretions in my lungs weren’t making things any better. All the junk that had accumulated in my chest was making it even more difficult to breath. You could hear me gurgling every time I took a breath. Being an RT, I knew how to self suction. You should have seen the look on their faces when I started to suction myself.! I(and they) were suctioning gobs and gobs of the grossest phlegm you can imagine. Dark reddish brown color with the consistency of jello instant pudding. Anyway, this nightmare of falling asleep and then waking up in a sitting position to find myself drowning in secretions, seemed to go on forever. Every time I got to the brink of wanting to rip the tube out of my throat, they would sedate me with Verced , and the cycle would start all over again. I would be out for an hour, and then I would wake up suffocating again. It was like the worse nightmare you could imagine. It was like hurdling down a long dark tunnel, and then suddenly, I would burst into conscientiousness ,waking up with a huge GASP. I was so miserable, I just wanted to die.

While all this was going on, I also experienced an episode of temporary blindness. Every time I would open my eyes, all I could see was a bright blinding light. I could make out silhouettes , but I couldn’t see people faces. It was really weird. They got worried about this new development and immediately called in an eye doctor to check me out. He couldn’t find anything obvious on his exam. He said it might have had something to do with pressure on the optic nerve. Thankfully the problem subsided and my eyesight came back.

So why on earth was I not sedated and kept asleep to begin with? Well, it turns out that I may have had a rare , but potentially serious reaction to the drug that they normally use to keep intubated patients asleep. The drug is called Propofol and it’s probably the #1 mostly used anesthetic in the world. It’s a wonderful drug, because you can basically turn on or off someone’s conscienceness like you’re turning on a light switch. It works super fast. It’s routinely used to keep intubated patients asleep, so that they don’t fight the ventilator like I was. When you want them to wake up, you simply stop the infusion. You wake up instantly. Works great when you want to wean someone off a ventilator. Though Ive been on this drug many times over the years, for some reason, my body wasn’t liking it this time and I began developing a lactic acidosis ( where your blood gets really acidic due to muscle breakdown.) My CKs and lactate levels were also getting really high. After ruling everything else out ( including too much albuterol , which can cause a similar problem), they concluded that it must had been the Propofol and immediately stopped the infusion. As an alternative ,they had to use a drug called Verced to sedate me. A nice drug for relaxing you , but not really designed to keep someone under for long periods.

Here are a few pics my partner took of me gorked out on the vent. There’s a good shot of the ventilator settings for you RTs out there. ( One of my ex co-worker/ RT friends, saw the pics on Facebook and noticed that the vent was in the weaning mode)

Finally after 2 days of pure hell, they decided that it was probably better to take me off the ventilator and let me breath on my own, rather than risk me blowing out a lung because of all the fighting I was doing on the ventilator. ( I’m just guessing that’s what they were thinking..I don’t know for sure).

Day 4, I’m now off the ventilator breathing pretty well and my blood gases have returned to normal. As the day progresses I start to get this strong urge to use the bathroom. I already had a catheter in me to handle number 1, but now, I had to go number two! After not going for 4 days I guess it was no big surprise that I would eventually have to go, but I wasn’t prepared for for what was about to happen.
Unfortunately, UCSFs new 13th floor ICU doesn’t have toilets in the patient rooms, so for the first time in more than 20 years I had to use a bedpan! But, if that wasn’t bad enough, I had the worse case of diarrhea and cramps you can imagine. I don’t think it bothered the Nurses, but it sure bothered me. I was hating life! For the next 2 1/2 days, my lower gut was in knots and the nausea and cramps that followed were unrelenting. They eventually set me up with a bedside commode ( basically a toilet on wheels), but with all the wires and tubes that were attached to my body, it took at 2 nurses and a physical therapist to get me from the bed to the commode. And guess what? Someone has to empty the commode. How embarrassing. On that first day , I went 5 times, on the 2nd day , 4 times ! ( You have to remember, I hadn’t eaten anything in the previous 5 days, so where this was all coming from I don’t know). Apparently , on top of all the other drug reactions, I was now having a reaction to all the antibiotics and all the other drugs they were pumping into me. To be on the safe side, they decided to put me in isolation for C-diff precautions.

By Friday afternoon the stomach cramps were diminishing in intensity and my breathing was much better, so they transferred me out of the unit to a private room ( thanks to my isolation order) in the step-down unit ….with a private toilet…YEAHH . My C-Diff test eventually came back negative.

Things were looking up. The only problem I had to address before going home , were my swollen ankles and my oxygenation level. Because I had no IV access in my arms, earlier in my stay they had to place multiple IVs in my feet. Normally this wouldn’t have been a big deal, (Ive had IVs in my feet before) , but this time because of all the fluids I received, somehow the vein in my foot must have blown , so some of the fluids that were supposed to go in my veins actually ended up in the tissue surrounding my right ankle. As a result , this caused my foot to arch downward ( what they call foot drop).
When I was finally strong enough to get out of bed, just standing up was painful because it forced my feet to flex back to the normal position. For the next 2 days, I did multiple short walks , and when I was in bed, I propped my feet up with pillows and iced my ankles which really helped a lot.

The very last challenge I had to meet before being discharged home, was being able to walk without desaturating. On my first attempt at walking down the hallway, my sat went from 95 to 79% in 2 minutes. After doing several more walks I was only desating down to 85%, but this was not acceptable to them. After a lot of coaxing and a threat of not being discharged, I agreed to go home on Oxygen until I got better. On Sunday afternoon at 2pm, almost 7 days to the minute, my 94th sentence was commuted and I was released on good behavior.

This was a tough one, but I’m thankful that I got through it, more or less in tack. I have a lot of hard times ahead of me,because the hardest part of this exacerbation actually begins now. For the next two weeks I’ll be fighting off the prednisone withdrawal symptoms and trying to regain some of my strength. Months of fitness conditioning and endurance building were wiped out in just a single week in the hospital. Then again…. all that conditioning is probably the reason I’m still around to blog about it.

I’d like to thank the following people for putting up with my shit (literally) and for treating me like a human being instead of a medical oddity;
Dr. Erika Moseson, Dr. Daniels, and all the other interns and residents who helped save my life…..again.
Also to ICU nurse James, and TCU Nurse Jen O.

Back in the old days when you got sick and ended up in the hospital, it was probably because your primary care doctor put you there. Boy, have things changed.

Nowadays you have one set of doctors who see you in the clinic when you’re doing well, another set of doctors who see you if you need emergency care, and yet another set of doctors who take care of you if you become hospitalized . Many times these “hospital” doctors know little, if anything, about you except what they observe right there on the spot and /or what they can read about you from prior admissions. If you receive your medical care at a huge teaching institution like I do, it gets even more impersonal, because you have multiple teams of student doctors and residents that rotate through the system a every 3 or 4 months. Chances are, you’re gonna see a different doctor every time you go in.

This system seems to work fine if you’re generally healthy and don’t need frequent medical care, but if you have a complicated medical history and don”t fit the mold ( like yours truly), then things can get a little frustrating…especially in the Emergency room.

That’s where the patient “intro letter” comes in. More and more Physicians are writing these kinds of letters for their medically complex patients (not just severe asthmatics) to carry with them. If you ever end up having to go to an Emergency room ,the letter basically introduces you to the staff and provides the physician with some basic information about current health problems. It can save you from having to recite your entire medical history over and over again to people who don’t know you ( this is especially helpful, when you can”t breath). It can include valuable information on what seems to work best in treating your condition.

The letter below was just updated a few days ago by my Pulmonologist, and is the actual letter I sometimes bring with me to the ER .

(And Yes… the feeling of suffocation I sometimes get during a really bad flare up, can make me a little anxious. IV Fentanyl and Ativan in tiny doses helps take the edge off. Of course everyone reacts differently to narcotics and most physicians are very reluctant to give them to their respiratory patients during a crisis, but for me they really help.)

Sometimes when I’m suffering from bouts of dyspnea, I’ll divert my attention by writing about it …. or I should say… bitching about it. Nine out of ten times, I’ll never actually post/publish these rantings, because by the time Ive written them , I’ve already begun to feel little better and they somehow don’t seem as relevant anymore.

Below, is the post I was working on just a few hours before I ended up in the hospital last week. I had no idea at the time, that my symptoms would escalate to the point where I’d need emergent care. Kinda weird reading it now:

Post title ” A matter of timing”

No matter what I do, no matter how well I take care of myself, the reoccurring theme seems to be…Breath good for a few weeks–Breath bad for a few weeks ! Cycle on, cycle off.
It’s like a I have a built in “breathing disruption” chip that’s programmed to trigger on and off every few weeks.

Well, after almost a full month of easy breathing, I’m getting increasingly more short of breath , and it appears that my “good breathing”cycle is finally over. I’ve actually gone way past that point now , and I’m beginning to titter on that proverbial slippery slope.

The question now is, do I let myself fall into the hands of the authorities, or do I hang on a little longer and hope for the best? If I turn myself in now, maybe I’ll get a lighter sentence. If I lay low , maybe I’ll make things worse for myself. I don’t know what to do.

Sounds crazy huh? , but I relive this same scenario about every 3 weeks like clockwork. I ‘m constantly cycling back and forth between good breathing periods and bad breathing periods….The only variable is how bad my breathing will get during the “bad breathing” periods.
If my theory holds true and my calculations are correct, then I should be back in a ” good breathing” pattern in about three weeks. The only problem , is that I’m supposed to be walking a marathon in 3 weeks…..That’s cutting it awfully close!

The ultimate cruelty of this disease, is that my “bad breathing” cycle might prevent me from attaining my goal of walking the Portland marathon, which my “good breathing” cycle allowed me to prepare for in the first place .

Less then 10 days till the marathon, and I still don’t know if I’ll be able to do it. I hope my 3 week theory is correct.

OK .. I admit it, I’m getting a little discouraged. Not so much about my ability as an endurance walker, but more so about the way I’ve been feeling when I’m NOT walking. Since the middle of September, I’ve had a tough time climbing out of my yellow zone and I don’t really know why. I seem to be been more breathless than usual , experiencing almost continuous symptoms. Except for the three exceptional breathing days I had last week, I’ve been pretty much SOB to some degree, nearly 24/7 . My doctors will dismiss this as some sort of “prolonged exacerbation.” A nine week exacerbation? I guess it’s possible , but I doubt it.
In a typical year I get maybe a dozen flare ups , but they generally don’t last more than 2-3 weeks. Even those times times where I ‘ve been critically ill , I was still able to recuperate fully within a month to six weeks. I’m beginning to wonder if this current state of breathing is going to be my new baseline?

There can only be two explanations for what’s going on here; either there is something persistently irritating my lungs (ie environmental and/or non environmental factors like emotional stress) OR, my disease is just plain getting worse. I suppose, it could be a combination of both. (BTW , if you’re a non-asthmatic, I apologize for the medical mumbo jumbo)

In an attempt to rule out possible triggers and to regain some green days , I’ve been meticulously recording my pre& post workout PEFR’s ( peak expiratory flow rates) , and because I have a significant degree of small airway dysfunction, which is not always reflected in the peak flow readings, I’ve also been documenting the degree of perceived breathing difficulty that I experience before, during and after my walks. I ‘ve also temporarily eliminated low-dose aspirin from my medication list.

These are some of the things I know for sure:

* I definitely have an “exercise-induced” component to my asthma as evidenced by an average drop of 250 points in my PEFR’s , immediately following my walks. These results would indicate a significant degree of airway narrowing and/air trapping. After inhaling nebulized bronchodilators, my peak flows, at least partially , reverse back to baseline.

* I definitely have an allergic component to my asthma as evidenced by extemely reactive skin tests to common allergens. Oddly though, my circulating IGE levels are low and this has my doctors perplexed.

* Much like a person with emphysema, I’ve lost much of the elasticity of my lung tissue , so I tend to breath stack ( dynamically hyperinflate) proportionally , and over time, with exertion. This means that the longer , the harder , or the faster I walk, the worse my breathing gets. These results were also verified during an exercise stress conducted at UCSF clinical airway research lab last year. Again, I get at least partial relieve of the symptoms after taking breathing treatments.

* Because my baseline respiratory function is so low to begin with, it doesn’t take much of an insult to throw me over the edge. Something as subtle as a small change in barometric pressure or relative humidity can make me feel like I’m suffocating.

*Breathlessness sometimes makes me anxious which in turn can make my breathing worse. It’s a vicious cycle.

These are the actions I ‘ve taken:

* Ive reduced the frequency and distance of my walks. ( at least for now)
* I no longer start a walk if I’m in the yellow zone.
* I’ve added stress reducers and medication to quell anxiety
*Scheduled PFT’s , including lung volumes to see if there are any physical lung changes.

None of this really explains why I’m experiencing increasing breathlessness when I’m NOT exerting myself. But, at least it rules out fitness walking as the primary source. The last thing I want to do is to STOP Walking!…….

In about 10 days I’m scheduled to start on a six month trial of Xolair injections .This new drug is used primarily to treat the more severe forms of allergy triggered asthma. Maybe that will be the magic bullet I’ve been looking for.
I just want to retain enough lung function, so I can continue to walk and/or occasionally racewalk, and to be able to breath relatively easy when I’m not doing either.

Important note: Since I began exercising regularly nearly two years ago , my overall lung function has actually improved (my baseline FEV1 went from 30% to 40%) but the periods of severe breathlessness have worsened. Weird huh?
As my Pulmonolgist always tells me……..I’m an odd one.

Especially about my lungs and how they react to sustained, but controlled physical exertion. Prior to my debut into the world of racewalking, I had just about accepted the fact that while I was able to walk considerable distances, I would NEVER be able to exceed a certain pace without putting my life at risk.

Yesterday , in the middle of my usual 6 miler, I broke out into a racewalk tempo and kept it up for a little more than a 1/2 mile without developing refractory dyspnea (the real scary stuff). I did however, experience a significant degree of air-trapping , but I was able to effectively reduce some of that discomfort with controlled breathing techniques. More importantly, I was able to recover from that racewalking volley without loosing all of my momentum . I was able to continue on with my walk without stopping to catch my breath. My average pace during that racewalking segment was only in the 10:00 range, but I was able to sustain it for nearly 9 minutes.

I know this pace was slow by racewalking standards, but when you consider that just last year, I actually blacked out while jogging only 100 feet, then I’d say its quite an achievement. It also takes away some of the anxiety I’ve had about pushing myself too hard.

This all leads me to believe , that with persistent and responsible training , I can indeed, increase my walking pace significantly ( at least intermittently) without throwing myself into irreversible bronchospasm. I also see now, that no matter how messed your lungs are, you will find away to adapt.

Yesterday I was in the green and walked 6 miles. Today I’m tittering on the red and I’m unable to do much of anything . I usually don’t post when I’m in the red zone because even typing is a chore , but I wanted to document just how fast things can change when you have the uncontrolled form of this disease

If you gage symptom severity by peak flow measurements, then I’m actually borderline red/yellow.( you’re in the red zone when your peak flow drops below 50% of your baseline. My baseline is 575, and today’s reading is 300.)

If my peak flows hold at 300 , I’ll just tough it out , take a few extra nebs and re-assess later today. If my peak flow drops below the 300 mark ,and stays there, I’ll bolus myself with 60mg of prednisone and cross my fingers.

The next 24-36 hours are the wait and see hours. If I’m going to break through , it will happen within the next 36 hours and I’ll be back out there walking by tomorrow as if nothing happened. If I don’t break through, it means a hospital stay is imminent

I have a very high tolerance for respiratory discomfort , which means that I usually postpone “going in”. Most Emergency room Physicians will tell you that waiting to come in, is the worst thing you can do. I know my disease better than anyone AND I’m a licensed Respiratory Care Practitioner. Most of the things that they do for me in the hospital, I can do for myself at home. I only go -in when I’m absolutely sure that I can’t handle it on my own or if I start to fatigue-out. You see, once the whole hospital process begins, you just never know what the outcome will be.