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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Withdrawals

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

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

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

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

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

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

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

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

Being sick for long periods like this, often has me thinking about lung transplant surgery and how wonderful it would be, at least in my mind, to not have to struggle to breath all the time. This month also marks the one year anniversary of my initial SARP work up, and the infamous meeting of the minds over at UCSF. At that time we had all decided that my disease wasn’t severe enough to be considered for transplant, and even if I did meet the criteria, I had pretty much made up my mind at that time, that transplant surgery was something that I wasn’t interested in. Well that was then, this is now.

Here I am a year later, getting more breathless everyday and starting to seriously re-think my earlier decision. But wait… even if I were to change my mind and actively pursue lung transplant surgery as a treatment option, my current baseline FEV1 of 35% is still too high to qualify. And if I’m suffering this much in the mid 30′s, I can’t even imagine how bad it must feel to be even lower.

The fact is, most people on the transplant waiting list have FEV1′s in the 20′s and sometimes in the teens. The majority are also on supplemental oxygen 24/7, and some of the sickest people are even on ventilators while they wait for donor lungs. I only require oxygen when I’m actively flaring and my FEV1 rarely drops into the 20′s unless I’m really really sick and Ive always managed to bounce back. [This whole oxygen criteria thing shouldn't even apply to an asthmatic waiting for transplant. The pathology of asthma is much different that Cystic Fibrosis or COPD. Asthma is a disease of the airways, not the alveoli. Most asthmatics don't require supplemental O2 unless they're actively flaring].

I suppose I should thank my lucky stars that my FEV1 readings are still in the mid 30′s, and occasionally even into the 40′s, but as good as I have it in comparison to those waiting for new lungs, life in the the 30′s is not exactly a picnic. And the fact that my lung function has dropped almost 30% in 6 years, tells me that my numbers will only continue on that downward path. It’s not a matter of if they will drop into the 20′s, but when .

Living in the 30 percent range is like living in a kind of breathless purgatory. Your days are filled with this low-level dyspnea that doesn’t get too severe unless you’re flaring, but is always there in the background effecting everything you do and making you miserable. In the 30′s percent range your lung disease becomes so advanced that most conventional therapies or medications no longer work, yet you’re not quite sick enough to qualify for transplant. Now, if I had emphysema and had lots of air-trapping, I would be a perfect candidate for LVRS or airway stents. But, I don’t have emphysema, nor do I have the type of hyperinflation or air-trapping that could be helped with airway stents. I have severe asthma with fixed obstruction and there’s very little that science can do for people like me.

There’s another criteria for lung transplant surgery that creeps me out a little and even makes my doctor a little uneasy, and that is, the longevity issue. How long can I be expected to live if I do nothing? Ive had doctors give me predictions of as much 5 years all the way down to one year. In order to be a transplant candidate you have to have a life expectancy of 2 years or less. Most transplant centers base that prediction on a BODE score of 5 or more.Currently, my BODE score is a 4.

I know I should be grateful for all Ive achieved through fitness and pure stubbornness, but sometimes I feel like I’m being penalized for doing the right thing and staying in shape. Had I not done all these healthy things, my FEV1 would have surely declined faster, putting me in a position where Id be eligible for transplant by now. Let’s face it, not too many people with an FEV1 of 35% have completed 7 marathons. What’s really ironic though, is that transplant candidates are scored on their level of physical fitness. Transplant centers want people who will be healthy enough to survive the wait time, ( up to 2 years in some cases), the surgery and the recovery. The stronger you are going in, the better the results. How that’s possible with an FEV1 in the 20′s or teens is be beyond me, but that’s the way it is. I have the required physical and mental stamina now, but will I still have them when my other numbers finally catch up. And even if I do meet all the criteria, will it happen in time? Most institutions set the maximum age for lung transplants at 60, I’m 56.

So as I’m getting ready to finish the closing paragraph of this post, the “But” part of the title hits me in the head like a ton of bricks. Life sucks with an FEV1′s in the 30′s, but I’m not to the point yet where I dread waking up everyday. I’m not to the point where everything I do is a total struggle. I still have the occasional “good breathing day” (or “not so bad breathing day”, whichever way you want to look at it). I’m not ready yet to trade my lungs in for a pair that may, or may not give me more of those precious “good breathing days”. But most importantly, and regardless of all the other criteria, I know I’m not ready for a lung transplant, because I’m still questioning whether I can live without one. I’ll know Ive hit my rock bottom when I’m no longer able to walk and life is no longer worth living…it’s as simple as that! I can see now why they set the transplant bar so high. It’s meant as a last resort, not a treatment option. So on that note, I’ll stop crying poor me and get on with life.

And as far as predicting how long I’ll be able to continuing walking, who knows, but it sure would be cool to rack up 3 Bostons in a row, before throwing in the towel.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Incarcerations

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

]]> http://breathinstephen.com/behind-that-finish-line-smile/feed/ 2 http://breathinstephen.com/training-update/ http://breathinstephen.com/training-update/#comments Sun, 28 Mar 2010 15:04:31 +0000 Stephen http://breathinstephen.com/?p=12151

Training for a marathon is no picnic..it’s hard work, but I’m a happy to report that I’m now 3/4′s finished with my training. With the exception of a minor, but troublesome foot injury, I’ve managed to survive this training session better than some of my previous ones. My lungs have been holding up pretty good too, with only a handful of bad breathing days so far.

Last Thursday I attempted the dreaded 21 miler, (aka, the marathon before the marathon). The walk did not go as well as planned. My legs were starting to ache from mile 1 and only got worse as I went on. Due to ill fitting shoes (the new Saucony’s) and that nagging foot injury, I was only able to complete 19.2 miles. Talk about pain, and this on top of an already arthritic body. The walk left me totally trashed and as expected, threw me into my yellow breathing zone for a couple of days after. I would have stopped at mile 10 and re-attempted the walk the following week, but there simply isn’t enough time.

With less than 3 weeks of training left , I can’t take the risk of anymore injuries, so Ive decided to start tapering off my mileage right now and just hope for the best. For the remainder of my training walks, which consists of 2 more long distance walks ( a 14 mile and a 10 mile) and 8 more medium distance walks ( 4-6 miles each), I will be back to wearing my Asics Hyperspeed IIs . They might not be the best shoes for me, but my feet are used them and they haven’t caused me any injuries. The Sauconies are OK for short sprints, but not for long slow walks.

Getting back to that foot problem, Ive developed what they call a metatarsalgia in the ball of my left foot. It’s a fairly common injury in older marathoner runners, and normally it wouldn’t be a big deal, but because I’m supposed to be walking a marathon in just 3 weeks, it’s a potentially huge problem. What happens, is that because I’ve trying to avoid landing on that part of my foot when I walk, I end up landing instead on the outer edge of my foot which is causing the rest of my leg to get sore. Add to that the pain of an already arthritic body, and it can make walking long distances pure torture. If it flared up during the marathon, it could prevent me from finishing the race. I’m hoping now, that because I’m finished with the majority of my long walks, that my foot will have more time to heal…albeit 3 weeks isn’t much time.

(See the redness circled under my big toe?)

On a more positive note, Ive had fewer problems this year with calf cramps, which I attribute to better stretching and better hydration.

As far as my asthma goes, my lung function has been been fairly stable. This time of year tends to be when I have my best breathing, which is a good thing. I do however, get short of breath much easier these days, especially when I exert myself. Even my shorter walks are taking a lot more out of me than they used to.

Assuming that I have the good fortune of crossing the finish line at this marathon, this will definitely be my last full marathon. As much as I love doing these races, my body just can’t tolerate 26.2 mile distances anymore and/or the training it takes to prepare for them. Ive now done 6 full marathons in just 5 years and I think that’s a respectable number to retire at. Half marathons are challenging enough, and I think I still have a few of those left in me.

]]> http://breathinstephen.com/training-update/feed/ 3 http://breathinstephen.com/my-old-yellow-is-my-new-green/ http://breathinstephen.com/my-old-yellow-is-my-new-green/#comments Wed, 17 Mar 2010 14:05:59 +0000 Stephen http://breathinstephen.com/?p=11537

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:

Green Zone 300 or greater

Yellow Zone 299-210

Red Zone 209 or less

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.

]]> http://breathinstephen.com/my-old-yellow-is-my-new-green/feed/ 4 http://breathinstephen.com/turning-the-corner/ http://breathinstephen.com/turning-the-corner/#comments Fri, 12 Feb 2010 14:58:42 +0000 Stephen http://breathinstephen.com/?p=11313

Suffice it to say, I wasn’t exactly a happy camper when I wrote that last post about my little prison stint. I apologize for that. At the time, I was roided out of my mind and was still very sick. Dr W helped me get through this awful time by reassuring me that what anguish I was experiencing was a normal response after suffering such a severe flare up, and that my complaints were not really unique.

But what a difference a few extra days can make. I think it was Thursday that I finally “Turned the corner”. As happens so many times when I think I’ll never recover from a severe attack, I just woke up one morning and all of sudden…Wham! I was breathing better and feeling better. It’s as if whatever was causing my lungs to act up in the first place, just burned itself out and left my body.

It’s astonishing how fast the transformation can happen too. One minute you’re feeling crappy, the next you’re feeling fine. This probably sounds strange, but for a while there it actually felt kinda weird to be breathing easy. All day yesterday I caught myself conscientiously trying to analyze my own breathing to see if indeed I was breathing normal…or I was imagining it. No wheeze, no difficulty exhaling, no discomfort…just normal breathing! So weird, but so appreciated. Id give anything to be able to breath like this all the time. Healthy people take their breathing for granted.

So with this most recent revelation, and after having survived literally dozens of these types of exacerbations, I put all my observations together and made a list. Ive been able to identify 6 distinct phases that I go through during the recovery phase of a severe asthma exacerbation that required a hospital admission.

Just for fun I call it ” The Recuperative phases of a severe asthma exacerbation” . The word hospitalization is important here, because the recovery phase from a severe exacerbation that did not require hospitalization, doesn’t seem to follow the same pattern.

Here’s the list in the order of occurrence. Can anyone else relate or add to this?

1)The Honeymoon phase: This is usually the period immediately following discharge from the hospital and usually lasts 24-36 hours. During this period you’re basically in a daze trying to adjust to familiar surroundings again. You’re breathing remarkably well and it seems like you’re getting better.
2)The Rebound phase: This phase usually starts on the 2nd or 3rd day out of the hospital and is characterized by a general worsening of all asthma symptoms. (So much for feeling better..huh). Now all of a sudden you actually feel like you are re-flaring and might need to go back into the hospital ( many do end up going back in). I think this phase is brought on primarily by the body trying to adjust to the lower levels of circulating systemic steroids (steroid withdrawals), and by other drugs and treatments that your body was used to getting while in the hospital.( ie cont or frequent nebs, bipap, oxygen etc.) There’s also the possibility that you were discharged from the hospital too soon.
3)The Zombie phase: Most of us know this phase well. Sleep deprived,unable to breath and body physically and mentally mangled, the steroids make you temporarily insane. Feelings of despair, guilt, blame and depression rear their ugly heads.
You’re riding an emotional roller coaster. You can’t turn your brain off. You’re body is rebelling too; You feel bloated, your muscles are cramping and you want to eat everything in sight. The intensity of these symptoms are usually steroid dose dependent and can last from a couple of days to a couple of weeks.
4)The Turning the corner phase: This phase mercifully begins usually around the 7-10th day out of the hospital, and can occur subtly without your awareness, or if you’re lucky, can happen with an abrupt onset, literally overnight. In either case, this is a welcome phase that signals you are finally getting better.
5)The Fatigue phase: Pretty self explanatory. You’re body is exhausted from working so hard, and now that you’re breathing easier and have less steroids in your system, you feel weak and sleepy. You’re coming down hard from a not so pleasant high.
6)The Amnesia phase: I’m not sure this happens to everyone, but certainly if you’ve been hospitalized multiple times, you’ve experienced this phenomena. This phase usually begins 1-2 weeks after the “Turning the corner”phase, or about 5-6 weeks after the initial exacerbation began. All of a sudden, it’s as if you were never sick, never hospitalized and never went through the living hell of a severe asthma exacerbation or recovery. I think it’s the brains way of blanking out the bad stuff, so that you can cope better with future attacks.

So that’s my asthma recovery theory/ check list. I think every physician and/or RT or Nurse who takes care of severe asthmatic patients should familiarize themselves with this list to get a better insight as to what we actually go through AFTER we get out of the hospital.

]]> http://breathinstephen.com/turning-the-corner/feed/ 18 http://breathinstephen.com/knocked-down-but-not-defeated/ http://breathinstephen.com/knocked-down-but-not-defeated/#comments Fri, 05 Feb 2010 20:23:19 +0000 Stephen http://breathinstephen.com/?p=11174

(Arterial Line)

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

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

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

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

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

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

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

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

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

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

]]> http://breathinstephen.com/knocked-down-but-not-defeated/feed/ 12 http://breathinstephen.com/tracheal-who/ http://breathinstephen.com/tracheal-who/#comments Tue, 26 Jan 2010 16:01:46 +0000 Stephen http://breathinstephen.com/?p=11062

Ever since I got out of the hospital for this last flare-up, Ive been noticing that when I take deep breaths in, I can hear (and feel) a slight inspiratory wheeze or airy sound coming from somewhere in my throat. More bothersome than the sound, I can actually feel some resistance as well. It feels like I’m breathing through a narrowed tube.

At first I thought that because I was weaning off the pred too fast, that my airways were rebelling by tightening up, but this sensation feels different than regular bronchospasm. Although very mild, it feels more like a permanent constricture in, or around the area of my vocal cords.

Well , after a week of trying to rule out possible causes, it finally dawned on me….. I probably have some kind of Tracheal Stenosis” or a vocal cord injury, related to my last intubation. I spoke with Dr W and she totally agreed with my assessment. An ENT doctor will have to look down my throat with a scope to confirm whether this is actually the problem, but I’m pretty confident it is. My only question is, is it my vocal cords that are jacked up, or is there some narrowing of the upper airway itself, and more important, can it be fixed?

From what little I know about this subject from working as an RT, Tracheal Stenosis is basically a narrowing of the trachea , either above or below the glottis, and is usually due to trauma caused when an Endotracheal tube is inserted in your windpipe ( Intubation).Although modern ET tubes are designed to be gentle on the airways, the physical presence of the breathing tube in your airway, can still cause damage and scarring to the surrounding tissue. The result, is swelling and/or thickening of that portion of the airway. The amount of time that the ET tube is in your airway is an important factor, as you’re more likely to develop a stenosis if you were intubated for a long period. But, that’s not always the case, especially when you’ve been intubated as many times as I have.

Up till now, this has been little more than an annoyance ,which only bothers me when I try to take a deep breath in. I am a little concerned however, that this could turn into a very serious problem the next time I have a major flare, so I just as soon get it checked and corrected as soon as possible.

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