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

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

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

I don’t usually write about my childhood, because frankly, its too painful and because most of it is so outrageous, that a lot of people wouldn’t believe it anyway. But just for kicks, I thought Id share one of my favorite stories.
To preface this, I have to tell to you that I came from a very dysfunctional family and had a very abuse stepfather, whom by the way, had asthma as well.

True story……
I can vividly remember on several occasions when I was 12 and 13 years old, of suffering with asthma so bad at night (because I had no medicine), that I would go through our garbage can outside with a flashlight, looking for old discarded Primatine mist bottles that belonged to my selfish stepfather . If I was super lucky, I would find one with a little bit of medicine left in it. Because there wasn’t enough propellant left in the canister to discharge the last spray, I would get a pair of pliers, put the canister up to my mouth, pull the stem out , and simultaneously suck out the very last drop of medicine into my lungs. And believe it or not, that one hit, would often save me from suffering a horrible night.

Now, if I was unable to find any “Bottles” in the trash ( that’s what we called the primatine inhalers….Bottles ), I would either have to wait till 2am when my alcoholic stepfather came home from the Bar, so I could riffle through his trousers (which he would always leave hanging on the bathroom door), in hopes of finding his inhaler and sneaking a few puffs, OR, I would tough it out till the morning, ditch school and have one of my friends shoplift me a bottle from the nearby Payless drug store. In fact, most of the inhaled medication I used as a teenager, was stolen. My mother couldn’t afford to buy me inhalers and my stepfather would only let me use his, when he was home..(which of course he was never), so I had to rely on my friends help. I never stole the medicine myself, because I was too scared. But my teenage friends were more than willing to do it to save their buddy from suffering so bad.

On the really scary nights where I couldn’t find any “empties” or my stepfather had run out of his own inhalers, he would sit me down in the living room and proceed to give me shots of whiskey that would make me so drunk, that I couldn’t complain about my bad breathing. One time that little trick didn’t work as planned and I woke up a few hours later in full blown respiratory failure. Thankfully, he had mercy on me and took me to the local county hospital where I almost died. Let me re-phrase that….. he drove me to the hospital and dumped me off in the ER. My stepfather didn’t like me very much.

Hey, I may have not been the brightest kid to tolerate abuse like this kind of abuse, but I was certainly was creative

Found this interesting and informative article about Dr Sally Wenzel, and why she decided to get involved in severe asthma research. It gets a little technical in the middle , but well worth the read.

The more I hear about this amazing women and all of her contributions to the study of this disease, the more excited I am to meet her and become one of her research subjects.

Here’s the PDF of the magazine that contains the article.
(Scroll down to pg.18)

As Dr Wenzel jokingly told me the other day;
“A little MORE closing the loop still needs to happen. That is why I am so excited that I will get to meet you and have you personally participate in closing the loop.”

Wouldn’t that be something, if my DNA, lung tissue or some other bio marker did actually help close the loop?

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

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

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

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

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

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

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

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

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

As I mentioned a while back, at the recommendation of Dr Wenzel at the University of Pittsburgh, I decided to do a 3 month trial of Qvar brand ( beclomethasone) . I’m hoping that adding Qvar to my treatment regimen will have a positive effect on my breathing by reducing the number of flare-ups I experience, and ultimately allow me to reduce my prednisone intake.

There are tons of inhaled steroid preparations on the market, so why an older product like Qvar? Well, the manufacturer claims that it’s steroid formulation has a smaller particle size than the others. This means better deposition into the lungs where my airway inflammation is thought to be occurring. In other words, the drug gets down deeper where it needs to be.
Why the claim of smaller particle size doesn’t seem to hold true for the generic forms is still quite debatable, but perhaps it has something to do with the way the drug is manufactured. Regardless, I think it’s worth the time and the few extra dollars if it will help me breath even a little bit better.

I started the trial 7 days ago with a dose of 2 puffs ( 80mg strength) twice a day, along with my regular dose of Advair 550/50 , 1 puff twice a day and my 15 mg daily maintenance dose prednisone.
Anything to reduce my dependency on the evil candy would certainly be welcome. Inhaled steroids carry some side effects as well, but nothing like prednisone. I’ll try to do monthly updates on how it’s going.

This is what a one month supply of my asthma medications looks like nowadays. Pretty scary eh!