Extra-Allergy Perception (EAP)

I'm sure you've heard of extrasensory perception (ESP). Well, what I have is EAP, or extra-allergy perception. When you have allergic-asthma as long as I have, this is a skill you develop.

Okay, so I suppose you're wondering what EAP is. Well, it's the ability to know when something around you is one of your allergy triggers. It's the ability to know what places you need to avoid.

Actually, it's quite a neat skill. As far as I know, I'm the only person alive with this skill.

I'll give you an example. As I enter another person's home, I can "sense" as soon as I walk in if that person has a dog. And I know I need to either get out, or prepare myself for an allergy or asthma attack.

As I enter my dad's cabin, for example, I can sense that there are a lot of dust mites and molds, and that I must not stay long. I also get this feeling as I enter certain homes.

My EAP is pretty accurate too. For example, when I went to Florida a few years ago, my wife wanted to spend the night at her cousins. Well, as soon as I entered that house I had this feeling I was going to have trouble. I told her I was going to have a rough night.

"Oh, you'll be fine. It's all in your head," she said.

Voila, at bedtime, my allergies and early warning signs showed their ugly faces. I was puffing on my inhaler all night, and I was tired the entire next day.

When I got to my parents home the next day I received no such sensation. I knew I'd be safe during the rest of the vacation.

My allergies are so bad, that I find it better not to plan on spending the nights at relatives or friends, and to pay for a nice hotel room instead. Of course that brings up another issue. Cheap hotel rooms are a gamble when you have allergies as bad as I do, and is why I include this as one of my 11 tips for traveling with asthma.

I think one of the reason's I developed EAP is because I grew up with this disease. I think if I had developed it as an adult, I never would have developed this skill, and my EAP never would have had a chance to develop and flourish.

Likewise, due to the fact asthma wisdom and meds were primitive when I was growing up compared with all we know today, I had many asthma and allergy experiences during my life. Because asthma wisdom has improved, I doubt there would be many new cases of EAP -- assuming I'm not the only one with this skill.

However, whether you have EAP or not, it's always a good idea to premedicate yourself with allergy medicines prior to visiting someone else's home for the first time. Or, another viable alternative is avoidance.

My unique asthma flares

I'm having a rare asthma flare up today. The reason is because I hired someone to make a new bedroom in the basement for my son, and all the sawdust, and dust mites being spewed up through the vents is killing me.

Well, it probably doesn't help that I've been cleaning the upstairs bedrooms, but that's done now. Keep in mind I'm not as bad as I would be if I weren't on all these great new controller meds, although I can definitely notice my early warning signs:

1. Tight chest
2. Itching feeling in neck area
3. exhaustion
4. Urge to sneeze
5. Nasal congestion
6. Runny nose
7. gut feeling
8. Ventolin isn't working
9. Can smell all the allergins in the air (a unique skill I have. More on this later)

Now, I've been meaning to talk about this for a while, but my asthma is unique in that no matter how I feel my peak flows do not change. For example, I just blew into my peak flow meter, and my PEFR was 690. Keep in mind my personal best is 730, so 690 puts me right in my normal range.

In fact, as I track my peak flows, I've noted feeling mild or "undetectable" shortness of breath on days when I've blown a 650, which is in my green range, and I've noted breathing normal on mornings I've blown as low as 550, which is in my yellow range.

This was not true when I was a kid. However, as an adult, my PEFR is not representative of how I feel. In fact, back in 1998 when my asthma was so bad I could barely take in a half a breath, and ended up in the ER, and later admitted for 10 days, my PEFR was over 700 for the entire stay. Go figure that out.

The Asthma Guidelines do note, however, that both symptom monitoring and peak flow monitoring are equally effective. The only problem with symptom monitoring is it's hard to really know it's time to give up and go to the ER (No, I'm not even close to that point, but I'm just saying).

If you monitor peak flows, and you blow a 60% of your personal best (for me that would be 438 or less), then you know you better take action quick and get better, or get your lungs to the ER.

Of course, whichever method you use, it's always hard to make the decision to go to the ER. It's easier to be modest and try to treat it yourself. It was this thinking that prompted me to write "Having asthma symptoms? Here's five tips to help you decide what to do."

So, needless to say, I have to monitor my symptoms as opposed to my PEFR. Now I still continue to monitor my PEFRs in a peak flow flowsheet I created (you can link to it here) just in case, although I do tend to slack in this area.

It's for this reason I'm usually relegated to being observant to my early warning signs as a cue that I need to stop whatever I'm doing and take action. However, still, that is easier said than done, especially when you're involved in a task you're enjoying.

Time released meds great for asthma compliance

So asthma used to suck worse than it does today. Of course before 1903 there was no epi, and before the 1950s no inhalers and nebulizers. Yet, in the 1980s there were so many asthma meds that being compliant was a daily battle.

If you want a good example of what I'm writing about, click here. I was on so many meds back in 1985 that I was taking some asthma medicine at least every four hours. While it got better by 1998, I was still taking meds every four hours. Theophylline was every 8 hours, Azmacort was 4 puffs every 4 hours during the day, and plus there were a few others mixed in.

Finally in 1998 Flovent came along. It was a stronger inhaled corticosteroid and was only needed twice a day. That solved the problem of the Azmacort. I actually liked the taste of Azmacort, but there was no way I was going to lug that big thing around with me. So, basically, the only times I took it were when I so happened to be home.

My point here is, that asthmatics today should be very happy. I was a little slow getting on this train, but in 2007 I was finally started on Advair. Actually, I was introduced to Serevent CFC back in 1998, but the side effects were too great. Advair, however, made my life so much easier. That's 2 puffs a day. One puff when you brush your teeth in the morning, and one puff when you brush your teeth in the evening. That's it.

I remember just before I was admitted to the asthma hospital in 1985 my doctor put me on a time delayed theophylline pill -- the first of its kind -- so I only had to take it twice a day. My doctor at the asthma hospital said those time delayed pills were a bad idea, and he put me back on the 300 mg dose every 8 hours.

I guess he was a little behind the times, as it was 25 years later most asthma controller meds are on a time released system. The time released system allows for asthma meds to be taken twice a day and that's it. It's great.

Doctors

I can think of few people more intimidating, or blunt, than some doctors. It's not that they don't care, because if they didn't care they wouldn't be doctors. It's that they become so rushed, so irritated with stupid people (understandably so), that they end up treating all people the same.

Definitely most doctors aren't this way. Most are are patient and good communicators. I have seen both types from a professional standpoint, and personal standpoint. Thankfully most of my doctors have been the good kind, yet I've definitely had a few doctors I was not happy with. And I work with a few too.

I've had patients, too, complain to me that, "My doctor didn't let me get a word in edge wise. He explained nothing. I don't even know why I'm in the hospital."

I have empathy for these patients, because I had one doctor who was such a prick he would treat me like I was the stupidest lot on earth. He'd tell me what I was going to do, and it didn't matter what I thought. Literally, he made me feel like the idiot he was treating me as.

Of course I was seeing him because for some reason in 1995 my asthma took a turn for the worse after several years of behaving, and he was a pulmonologist who was highly recommended by a friend. Plus I was in a new town with a new job.

I got to the point I'd rather have no doctor than a doctor who treated me like that. So I fired him. I went the next three years without a doctor, moved to Shoreline where I got my recent job, and the process of moving (and the flu) landed me admitted here at Shoreline in Feb. of 1998 for the first time since I was discharged from NJH.

Ironically, the day before I was admitted in 1998 I had an appointment with an Internist I worked with here at Shoreline Medical. I chose this doctor because he
seemed to be normal. And I chose an Internist because there are no Pulmonologists nor allergists where I live, and I didn't want to travel. And I certainly didn't want to see a family doctor and gamble that he knew how to manage asthma.

So, the very first thing I said to my new doctor (We'll call him Dr. Breath) was this: "Look, I'm the kind of patient who likes to have control. I study asthma, I know all the new meds, and I want a say in my therapy. Likewise, I want you and I to work as a team to managing my asthma. I can't handle another doctor like my last one. Talking to him was like talking to a brick wall."

Funny thing was, Dr. Breath did his residency with my previous doctor, so he knew him well. "Hey," Dr. Breath said. "I'm fine with that. And I know he can be a hard doctor."

And from there we launched a positive doctor/patient relationship. He provides his wisdom and expertise, and I provide my experience and my asthma expertise. I never over rule him. And, when I come up with an idea, I usually lead him on so he thinks it was his idea. That's fine. I don't need credit.

So, here is my advice to all asthmatics, and anyone who has a chronic illness and has to see doctors on a regular basis:

1. Respect your doctor, yet don't let him intimidate you.
2. Know you are the boss, not your doctor.
3. If you and your doctor don't click, hire a new one.
4. If you question the care you're given, ask for a referral
5. Make him take the time to answer your questions
6. Come with a list of questions and recommendations (on paper if necessary)
7. Do not leave his office unless all your questions are answered, and he responds to your recommendations.
8. Do not let him leave the office if you are not satisfied.
9. And remember, no question is dumb if you do your research and are prepared

Keep in mind here that doctors are busy, and they have a day stacked with many appointments, and they get paid by the appointment, not by how much time they spend with each patient. So a rushed doctor is often a blunt doctor. No disrespect meant, that's just the way it is.

Some people like this. Some people prefer a doctor to take charge. Yet, if you're the kind of person like me who is wise to his condition and wants to be a part of the therapy, then it's up to you to find a doctor who fits your personality type, and fits your agenda.

Related posts:

The 6 types of asthma doctors

Discreet inhaler use

I've noticed from reading other asthma blogs that I'm not alone in being discreet about using my inhaler. Yes, even though I've had this disease 40 years, and even though I'm an adult and most people around me know I have it, I still hate to use my rescue inhaler (my Albuterol) in front of other people.

It's been this way my whole life. It was 1980, and I was 10, when I got my first Alupent inhaler. My mom made me take it to school. Considering I was small for my age, and the inhaler was slightly bulkier than the ones we have today, that inhaler created a bulge in my pants. Yes, that in itself was embarrassing for a kid.

So, needless to say, I created a seat in the back of the class and stayed back there unless I absolutely had no choice. And when I was having asthma symptoms, that inhaler stayed put. I didn't want anyone to know I had it. I didn't want to answer whatever questions people had. I didn't want people to know I was sick. And, most important, I didn't want to be in the spotlight where the teacher and other kids would notice the bulge.

And, since my teachers never noticed I was having asthma symptoms, my asthma often went untreated while I was in school.

I know this sounds stupid, but it's how it was. And during recess I would stand by the side of the building instead of playing with the other kids. It was easier to not participate than risk being the center of attention. Of course the fact I was allergic to everything outside, and had exercise induced asthma, didn't help.

This behavior, coupled with the fact my nose was always dripping, ultimately lead me to being the easy person to pick on. Of course, one would hope, this type of thing would never happen today, as most parents and teachers are better educated about asthma, and asthma in children is better controlled by modern asthma wisdom and asthma medicine.

So, needless to say, there were many days I conveniently forgot my inhaler.

Ironically, one of the kids who picked on me when I was 10 later became a good friend of mine. We worked together at a local A&W when we were teens. One day the topic of my asthma was brought up, and she said, "I remember we picked on you because you were the little, easy to pick on kid who was always coughing and wiping his nose. I feel really bad. I never would have picked on you if I would have known you were sick."

"The thing was," I told her, "is I didn't think of myself as sick. To me, it was normal to be short-of-breath all the time. As a kid you don't know any better."

Yet, even as an adult, I still hate to use my inhaler in public. I will openly discuss my asthma, but I will rarely use my rescue inhaler in public.

When I first started my job as an RT at Shoreline Medical in 1998 I would use my inhaler whenever I needed it. And, before long, people were looking at me awkward and asking me questions, and I'd be forced to explain to them why I was using it. Since I don't like to be the center of attention, I chose to use my inhaler when no one else is around.

One day it was really busy, and I so happened to have a cold, and asthma symptoms. We were in the ER working on a sick patient, when I turned around and puffed on my inhaler. I think I did it more out of habit than anything. I needed it, and I used it.

Once things calmed down, the nursing supervisor cornered me, "Rick, you're sure using your inhaler a lot. Are you okay?"

I am? Shoot! I better be more careful," I thought. "No, I'm doing fine," I said.

"If you're fine," she said, "then why are you using it so much?"

"Ummm, ahhh, eeee, ahhhhh...."

See! It's easier to be discreet. It's easier to find a closet. It's easier to find an empty room. It's easier to wait to use it until you find a moment where you are alone to use it.

Out in the real world, it's easier to be a discreet inhaler user, unless you like the spotlight.

Reasons most asthmatics don't use spacers

It has been proven that a rescue inhaler like Albuterol works 175% better if used properly with a spacer device. That said, only 20% of asthmatics use their inhaler with a spacer.

Here's my list of why this might be:

1. Grew up in the no spacer era
2. Carrying a spacer is too inconvenient
3. Spacers are too bulky to carry around
4. Laziness
5. Never showed proper inhaler technique
6. Don't know what a spacer is
7. Don't know advantages of spacers
8. Spacers make being discreet impossible
9. Personal preference
10. Don't need 175% more medicine
11. It works just fine without a spacer
12. Can't afford one

Please help me add to this list.

Rescue inhalers

So let's talk rescue inhalers. You know what I'm talking about: Albuterol. Well, there are other ones out there too, but for me the bronchodilator (rescue inhaler) of choice is Albuterol.

It didn't start out that way though. I was first introduced to Alupent in 1980 shortly after my 10th birthday. I remember sitting on the edge of the doctors table, and the doctor entering the room with this little white thing. "This is an inhaler," he said. "We'll see if it helps you breathe better."

He held it a finger's length from my mouth, and I inhaled (as instructed) as he squirted. As most asthmatics do on their first inhaler breath, I choked on the nasty taste, and white mist spewed from my mouth, into the room and disappeared.

"Fine," he said as I coughed and gagged, "Let's try again."

Despite the nasty taste, the procedure went fine the second time, and that was the beginning of my love affair with the bronchodilator inhaler. Soon thereafter the stuff became tasteless.

Quite frankly, I don't know how I ever got along without it before that time, nor why I wasn't introduced to it earlier. It was simply an adorable little object.

I remember thinking how would I have survived back in the days before the inhaler was invented. I bet I would have died as a kid.

Yet, in retrospect, I now wonder if it was a gift or a boon.

Now, I'll stop myself here a moment. Most of you probably read that last sentence and said to yourself, "What? How could an inhaler be a boon?" Well, that's where what you'll learn by reading my blog will differ from what you will hear about asthma anywhere else. Allow me to explain.

I read a while back that none of the asthma experts of the 19th century noted that asthma caused their patients to die. In fact, Henry Hyde Salter mentioned in his book, "On Asthma," that none of his asthmatic patients died. They had a high morbidity, but nill mortality. It wasn't until epinepherine was invented in 1903 that asthma deaths started to spike (you can read more about this by clicking on the links that follow this post).

Before 1980, before I was introduced to Alupent, whenever I had an asthma attack I told my parents (well, eventually I would), and they'd take me to see Dr. Oliver or to the emergency room, depending on how bad I was, or what time of day I revealed my secret. I say secret because few people know how to pick up on the signs of bronchospasm -- at least back then anyway. It's a skill. You have it. I have it. Most people don't have it. Many doctors have no clue either.

At the doctor's office, or the ER, I would be given a shot of susphrine (long acting epinepherine) and it worked within 5 minutes to open my lungs and make my breathing easier. Then I'd be given a shot of systemic steroids, a pack of roids for the road, and be sent on my merry way back home with mom.

Now, with the inhaler in my possession, now I have a way to treat myself. Now I can puff and puff and puff to my hearts content. Thus, once I realized I wouldn't die by taking extra puffs (which didn't take too long by the way), I would take my inhaler instead of telling my parents.

Now, do you know how many asthmatics were found dead with that old faithful clutched in their grip? Right? Neither do I. But there were many. The same philosophy holds true for the Serevent, Adviar, Symbicort, Formoterol, and those types of medications. These meds have been blamed -- linked -- blamed for many asthma deaths.

Yet, when I take extra puffs of my Alupent-Albuterol-Serevent-Advair, I don't die. If I died, I certainly wouldn't be writing this right now would I? I dont' think so. So, the fact of the matter is, those meds don't kill. So, what does kill?

What kills is the false belief that these medicines will actually make your asthma get better when what you really need to do is seek professional help. And that, my asthmatic friends, is why I think the new asthma guidelines are a gift.

While they say it's fine to use rescue inhalers, and they recommend all asthmatics have one, they highly recommend to doctors that increased use of rescue inhalers is not going to kill the patient, but is a sign of poorly controlled asthma or worsening asthma. Yet, back in 1980, or in 1981, or even in 1985 when I was at the asthma hospital, or 1990, I was not taught this.

Of course in 1985 my asthma was controlled to the point I needed my rescue inhaler less often. Yet, still, increased rescue inhaler use was not linked to worsening asthma. It was linked to noncompliance. It was linked to bad asthma. But it was not linked to worsening asthma. Or, at least I don't think it was as a general rule.

Yet, over time, when Alupent hit the dust and along came the Albuterol, which had a stronger beta 2 effect on the lungs and much less of an alpha effect on the heart, well, now we had an inhaler that we could abuse even more.

So there was another medicine like Serevent and formoterol -- perhaps it was formoterol -- that was released in the 1970s, and asthma deaths spiked. So, instead of introducing asthmatics to this medicine in 1970, long-acting bronchodilators were not made available to the public until the mid to later 1990s. Why? Because areas where this long-acting bronchodilator were trialed, asthma deaths skyrocketed. I wonder how many asthmatics were found dead with this medicine clutched in their grip.

The same was true for Serevent. There was a time a few years ago that the FDA considered taking this medicine off the market because many asthmatics were found dead with this medicine clutched in their grasp. Thankfully, someone realized something here was amiss. Thankfully a warning was put up, "Take as prescribed. Take only twice a day."

Yet, still, was it really overuse of the Serevent that killed these patients, or because these asthmatics waited too long? Did these asthmatics have too much faith that the Serevent would get them over the hump that they died waiting? That's what I think.

With exceptions of course, I think most asthmatics don't die becasue they take extra puffs of their rescue inhalers, or long-acting bronchodilators. I think they die because of poor asthma education. And, thankfully, this area has been greatly improved in recent years.

Now you see medicines like Symbicort being approved to be used as rescue inhalers in Europe, Australia and Canada as part of the SMART program. This is currently being investigated as a possible option for asthmatics here in the U.S.

However, it must be noted that I am not endorsing the overuse of beta adrenergics. What I am endorsing is a common sense approach to asthma therapy. I endorse educating doctors, researchers, scientists and patients as to how rescue inhalers really work. I endorse asthma action plans. I endorse asthma wisdom.

Too much Albuterol has been proven to be safe, yet to what extent? What patient will die from too much Albuterol (I have yet to here of a patient die from too much Ventolin). I went through an inhaler in one day once (or probably more often than that), and I'm still here. So we know Albuterol didn't kill me. Or, was I lucky?

I wouldn't take that gamble with long acting bronchodilators like Serevent and Formoterol. I do think it's safe to use them more than just twice a day, but I wouldn't go overboard. And I wouldn't do anything with these meds without permission first from my doctor. And I highly recommend you don't either, unless you're the gambling type (like I was when I first got my Alupent inhaler).

There has to be a limit somewhere. The SMART program recommends using Symbicort -- I think -- no more than 8 times a day. I think that's a good place for a patient to stop. The FDA, however, and the asthma guidelines still have not approved this medicine for any greater use than twice a day for asthma. The black box warning still exists for both Advair and Symbicort.

So while I don't think these meds at their face value kill asthmatics, I still think we asthmatics can lean too much on these meds. They, in a sense, become a clutch. Yet I most humbly, and from my own personal experience, recommend that all asthmatics not use their rescue medicine -- and especially their long acting bronchodilators -- as a clutch.

And, in that sense, I often wonder if me using my Alupent as a clutch caused me to wait too long too many times, and that's how I developed worsening asthma as I aged from 10 to 15 when I was admitted to the asthma hospital. Or, would I have gotten worse regardless what I did.

I honestly was never admitted to the hospital once before I had a rescue inhaler, and between 1980 and 1985 I was to ER God knows how many times, and admitted God knows how many times. In 1984 alone I think it was 14 trips to the ER, all because I waited too long to seek treatment.

By 1985 my parents and doctors thought I was going to die if something wasn't' done. That's how I ended up at the asthma hospital for 6 months. In fact, I know I was thinking along these lines even as a 15 year old, because I remember talking to my counselor at NJH about my rescue inhaler overuse.

So, in a strange way, I wonder if all this would have been avoided if I simply was never given that device in the first place. I wonder if I wasn't given that first Alupent, if I would have sought out help instead of staying home and letting my asthma get all that bad that many times, thus every one of those bad attacks led to worsening scarring.

I say this because we know if an asthma attack is treated swiftly and correctly that further damage can be prevented, and asthma can be treated. Yet, I also know asthma wisdom was different back then. While doctors knew that inflammation occurred during an acute attack, they didn't know there was chronic inflammation that needed to be treated DAILY with inhaled steroids. Of course, inhaled steroids were feared back then as much as systemic steroids.

So who knows. Perhaps I'm thinking too hard. What do you think?

Related posts:

1. Modern meds may cause fatal asthma
2. Is it possible pure asthma is not a fatal disease
3. Advair/Symbicort: Is overuse really deadly?