Archive for August 2013

Summer 2013: ER Trip #5

Deciding To Go

This whole past week hasn’t been good with night time PF readings constantly dipping into the 300s.  My daily breathing treatment count slowly climbed to 10 by Thursday and I was once again being seriously asked if I needed to go to the hospital.  Of course I probably should have, but I really didn’t want to and had a case of the asthma-brain influencing my decisions.  I figured I’d go the cheap route and call my doctor yesterday morning to bump up my prednisone taper or something.  An email, I love that some doctor offices let you email them, to my primary care physician resulted in a quick reply that my doctor was not in today and suggested I contact my lung doctor.  While some might think I was blown off, the response was actually quite reasonable.  I still haven’t followed up with my lung doctor since I was hospitalized and they’re the ones that finally got me back on track in July before the drywall dust debacle at work last month.  So I left a message at my pulmonologist’s office, you can never actually get a person on the phone it seems, and waited.  I waited all day long and then ended up back in the ER.

It’s hard to describe, but unless I encounter a severe, unplanned trigger or circumstance – I can tell when I’m going to have a day bad enough to result in an hospital trip.  I kind of had that feeling Thursday and I definitely had that feeling Friday morning.  It’s that whole gut reaction thing.  I hadn’t slept for several days, but did get a couple hours sleep in mid-morning.  The sleep helps, but when you miss a scheduled breathing treatment, I’m not always sure which is worse.  Chuck and Liz got home just after 5 and Chuck really wanted me to play with her.  That’s about the time when the meds stopped keeping the symptoms at bay.  A good friend of ours brought over some amazing chili and corn bread for dinner.  We ate, Liz told me to go take more medicine, we hung out and watched some of The IT Crowd.  I was back into the cycle of PF at 400 or below, neb, get back up to 500ish and then slowly drop back down.  During this time I was noticing my O2 getting to 93, which isn’t bad, but also isn’t good, and when I’d start panting for no good reason I knew I had to keep an eye on things.

Around 11:00PM, PF values were at 350 and below.  I went ahead and told Liz and decided to re-evaluate myself at midnight.  An hour came and went.  I did everything I was supposed to and took all my meds, but my numbers were still the same.  It was time for ER trip #5.

I feel bad for Liz.  Yeah I have all the breathing problems, yeah I go for days without sleeping, yeah I’m on tons of drugs and am always getting stuck with needles – but I do all this while often getting to forget about normal day-to-day life.  Liz still has to go to work and teach, she ends up taking care of Chuck 90% of the time and that’s on top of everything else normal people do and take care of in their daily lives.  So while I’m feeling awful and need a ride to the Emergency Room, Liz, who is already tired, knows she’ll be up until at least 4am, will most likely be wrangling our daughter tomorrow AND has work obligations in the morning.  I think the Coen Brothers’ Nihilists say it best, “it’s not fair!”

Getting Treatment

Another quick PF check clocked me at 320, Liz’s mom came over to watch Chuck and I sloth’d my way to the car with asthma gear in hand.  Thunder had just started on our way out and I wondered how many other asthmatics we’d encounter.  With the high heat, insane ragweed/pollen counts and now a thunderstorm rolling in – I knew us lungers would be out in force.  The trip there was pretty easy since traffic dies way down after midnight.  When we pulled up to the ER entrance there was a less-than-smart citizen smoking a cigarette immediately next to the entrance.  While I would have loved to share my thoughts on all the no-smoking signs staring at the guy, I shuffled as quickly as I could into the building without breathing in the poison.  Before I knew it our friend from registration was telling a guy who I was cause she knows I can’t talk right when coming in.  I scribbled my name on a piece of paper, tried to answer a couple of questions to someone else, and they wheeled me back to a room.  Haley even came back later and got Liz some Subway.  All I have to say is it pays to know people.

Usually I get stalked back to the room by several people but today was the exception.  I lumbered off the wheelchair and onto the bed, was given a gown and the triage person left.  Remember me wondering how many other respiratory patients would be in there today?  Well there were a lot.  Ten minutes go by and someone from radiology showed up with a portable x-ray machine to perform a chest scan.  Liz told her it wasn’t really worth getting an x-ray right now because respiratory hadn’t even started meds yet.  I’ve had this happen before and when my airways are so tight, I can’t really breathe in enough for them to get a good image.  Five or ten minutes later you would have thought I’d just finished a marathon by the amount of sweat rolling off me because breathing can be hard work.  Another PF check showed me now at 260 so I decided to just start a breathing treatment of my own.  It really does pay to carry your own medicine with you.  Half way through my own meds, the room nurse came by assuming respiratory had started their thing from the noise of my nebulizer compressor.  She immediately put in another call to see where they were, got an IV started on the first try (last two trips took 4 pokes each), and set me up with 2L of oxygen.

The respiratory therapists, two this time, came by and were surprised to see me medicating myself.  They hooked me up with a couple duoneb treatments, listened to my lungs several times and relied on Liz for information.  Apparently I was really making their day because the main one announced they should go buy lotto tickets.

  • I knew my baseline, historical and current Peakflow information
  • I brought all my meds as well as had them listed on paper
  • I use a spacer
  • I’m compliant with my medications
  • I write down all meds taken and any circumstances surrounding my breathing
  • I had a fairly good idea of why today required me to come see them

They even asked if I had considered running a seminar on how to be a good asthma patient.  As usual one of the first comments was, “well I’m not really hearing any wheezing,” but they were surprised at how little air I was moving.  Liz quickly informed them of my general symptoms cause she’s awesome.  X-rays came back again to get that chest scan and Liz heard the therapists out in the hallway talking about how I don’t really “seem asthmatic” at first glance but I’m obviously a severe.  The respiratory therapists came back in to give me a 3rd treatment, but wanted my opinion on it since I had done nine in the previous 24 hrs and three more in the past hour.

RT: Here’s the deal, I think you could use another one, but I’m kind of concerned with your heart rate and the side effects.  What do you think?

Me: Let’s hold off for a bit and see what happens.  I’m already moving a lot more air.

After seeing my PF has gotten up to 450, they decide to go ahead and let me hold off for a while.

RT: We’ll check in with your doctor and see what he thinks.  I’d give you more medicine, but they only let me neb you 3x before a doctor gets involved…cause I’m just a lowly respiratory therapist.

Me: Yeah, and I’m just a lowly patient.

The Doctor

My doctor rolled in and right away I could tell there was something different.  On a rare occasion I encounter medical professionals too cool for school who want you to know they have it together.  They’ll say lots of big words, not really let you answer questions and walk out leaving you with more questions than before they arrived.  Dr C was not this kind of doctor, he was actually kind of awesome.  He had obviously looked through all my info.  He knew I had been there 4x prior, he knew I was on all the medications you would normally prescribe, and he knew I wasn’t your average asthmatic.  After discussing my medication, treatment and brief history the conversation quickly turned to something more interesting.

Doctor C: Have you guys by chance heard of RadioLab?

We then discussed that guy who gave himself tapeworms to cure his horrendous allergies and asthma.  While all three of us thought it was great the dude cured himself, Dr C wasn’t exactly endorsing the act of purchasing worms someone has harvested from their own feces.  After we had a good, well as much as I could muster, chuckle about infecting oneself parasites, the topic of conversation quickly switched to my Maxpedition Jumbo Versipack, aka the Asthma Bag.  I don’t know why all the medical people who see it thinks it’s so awesome.  Kind of makes me feel cool just to have it.  Doctor C picked it up and examined it thoroughly.  He really dug my setup.

So what to do…Doctor C was concerned with my O2 levels.  He also asked about other non-standard treatments they sometimes administer to avoid intubating.  My oxygen saturation usually registers pretty high in the 97-98% range.  After I had another breathing treatment and things settled down a bit, Doctor C took me off the nasal cannula to see who everything looked.  I did dip into the 80s briefly, but mostly stayed at or just above 92%, which was the defined line.  I was glad to not get admitted again.  I would guess we probably spent 20 minutes or more talking candidly with the doctor.  At no time was he acting like he needed to be somewhere else or one of his other patients in the ER that night was more important than me.  Interestingly I later popped his name into Facebook and discovered we not only graduated from the same university, we have cool Facebook friends in common.  Small world.

The Aftermath

One great observation the doctor made was when someone like myself is on prednisone, the taper really shouldn’t end until several days AFTER I’m doing well.  I did finally achieve that back in July but then had another setback with the construction dust flare-up.  So my taper’s back up to a “big boy” dose and I’m fairly confident I’ll be ok through the weekend until I can follow-up with my regular doctors.  The salumedrol is probably the most effective medicine I get at the hospital which I cannot give myself at home.  It’s a corticosteroid, similar to prednisone, administered through an IV.  I’ll be good for a couple days on that alone, and the extra oral prednisone should boost me the rest of the way.

This further cements in my mind the need to participate in an asthma research study.  I’m looking forward to beginning SARP III next month.  I’ve also been wondering if I should be nebulizing any other medications.  I’m already taking Spiriva, but maybe something like scheduled DuoNeb treatments supplemented with Albuterol treatments would be more effective?  Definitely something to talk about with the various doctors I’ll be seeing in the next few weeks.

Lastly I must mention the traditional drive through Taco Bell.  The hours of labored breathing can really work up an appetite.  I finally tried one of the new Fiery Doritos Locos Tacos.  The Nacho Cheese variety is pretty decent, but I was really disappointed with the Cool Ranch.  There just isn’t a strong taste to wow me into believing I’m eating an amazing Doritos-Taco Bell food combination.  To be fair Cool Ranch Doritos don’t exactly have an over-powering taste on their own, but I feel it should be stronger when combined with a taco.  The Fiery version takes the cake for me.  It has a big, bold flavor that improves upon the standard Nacho Cheese.

doritos_locos_tacos

Mt Dew: A Love Affair

As a small child I encountered Dr Pepper and immediately fell in love.  While others drank their Coke, RC Cola, and flavored pop like Cream Soda, Root Beer, Orange and Grape – Dr Pepper was the drink for me.  Eventually I moved to another part of the country where Pepsi was king and came across Mountain Dew.

By the time I was in junior high I had started working at this place with an old school Pepsi machine that dispensed bottles and provided me all the free Mt Dew I needed while at work.  In high school my friends and I would consume copious amounts of the stuff and the only reason I can come up with how I stomached all those calories is Mt Dew used to contain far fewer calories than it does today.  In fact, many people like to talk about just how bad Mt Dew and other caffeinated, sugar filled, chemical-laden sodas/pop/soft-drinks are.  Cause they’re bad for us, right?

I can’t say my innards have every been tickled or that I got a girl to like me because of Mt Dew, but I have done a lot of target shooting with this preferred beverage keeping me “hydrated.”

All one has to do is a quick internet search to find out Mountain Dew can dissolve a mouse, rot your teeth, screw up your pH levels, or cause memory loss and organ failure.  Some of the Brominated Vegetable Oil stories have been slightly debunked, but I wouldn’t go so far as to say you should consume that.  I’ve even heard that Mountain Dew exacerbates asthma, but you’ll notice in this article there was a similar correlation between smokers contracting a respiratory condition.

To be fair I understand all the bad things about drinking pop, soda or whatever you call it.  A friend of mine, who happens to be a rare lung disease nurse, says the biggest thing to worry about with Mountain Dew and similar drinks is the phosphoric acid they contain.  It can negatively affect your bones, teeth and kidneys, but my friend is most concerned with how it makes muscles gummy or less responsive, which isn’t good for your diaphragm.

So is there anything good about Mountain Dew?  Well there’s caffeine and I happen to think it tastes good.  Caffeine is known to be a natural bronchodilator.  It’s no where near as effective is puffing a rescue inhaler, but it does help.  I’ve heard stories of doctors giving asthma patients cups of strong coffee or other highly caffeinated drinks to assist with asthma.  Every time my pulmonologist has me do a pulmonary function test I’m asked to abstain from caffeine beforehand.  At some point in high school I noticed drinking Mt Dew helped alleviate the side-effects of my asthma medications.  Just that alone can be worth it at times, especially when you’re dealing with insomnia.  While too much Mt Dew could make me tired while driving at night, I can’t count how many times it’s helped put me to sleep.  Sometimes reclining just the slightest makes my oxygen saturation drop making it impossible to become comfortable or sleep.

I think the real concern here, like with many other things, is moderation.  I don’t drink Mt Dew every day, nor do I pick up a 2L to drink in the car anymore for a road trip.  I have a personal rule to drink twice as much water after a Mt Dew and that’s in conjunction with my other rule to drink at least a gallon of water every day.  When all is said and done, I figure pop is better for my health than alcohol or the many other harmful things I could be putting into my body.

Severe Asthma Research Program

How I found SARP

A while ago I heard about the Severe Asthma Research Program (SARP) but didn’t really think much about it.  Last year wasn’t a good one for me with the non-existent winter creating an extra long mold season followed by the regular tree, grass, ragweed seasons rolling into fall with more mold.  I was fairly miserable until late November or early December when the cold temperatures finally killed everything off.  For a few months I was high on life doing little tasks around the house, cleaning out a closet, rebuilding a WWII shotgun and actually thinking about things I’d like to do with my free-time instead of just figuring out how I’m going to do the bare minimum.  Even though this only lasted a few months, I sure did enjoy it.

Eventually things started flaring up again and I can confidently say I’ve been “sick” since mid May.  I keep track of data for my doctors to more clearly quantify how well/bad I feel.  Here’s an account of how many breathing treatments I’ve been doing separate from my rescue inhaler or other rescue medications:

  • January – 28
  • February – 25
  • March – 31
  • April – 14
  • May – 61
  • June – 126
  • July – 107
  • August – 195 and counting

Earlier in the year several friends of mine in the medical community asked if I’ve ever gone to an asthma center/clinic or have ever gotten a full work up/proper diagnosis.  I was kind of surprised this hadn’t already happened.  I would say I’ve had moderate asthma for years.  It’s something I’ve struggled with for more than two decades and have been prescribed inhaled steroids to one degree or another since 1993.  I’ve never really thought of myself as “severe,” but to be fair my condition started deteriorating in 2006 and kind of went logarithmic in 2009.  Describing what all occurred and was discovered between 2008 and 2011 is a long story, but one compounding factor was just trying to find doctors interested in listening to my special case and taking me seriously.  In that time period I saw two primary care physicians, two allergists, three or four pulmonologists and an ENT doctor, as well as took a trip down to Brigham and Women’s Hospital in Boston to be told I was having a decent day and to stop worrying so much.  At times I’ve wondered if things wouldn’t be so bad had I continued to receive quality care during that time, but it’s a topic not really worth hashing and re-hashing.

So fast forward to August 2013 and I think it’s fair to say this is one of the worst months of asthma in my life so far.  Last week I spent four days either in the ER or admitted at my local hospital and I don’t even want to think about how much work I’ve been missing.  For now I just need to focus on getting better, avoiding triggers and physically limiting myself.  About a week ago I was out in the living room watching movies and googling whatever sounded interesting because once again my lung function was low enough I couldn’t sleep.  It was that night I came across BreathinStephen.com and noticed this thing called SARP for the second time.  I checked out the web site and it really seemed like something for me.  Friends of mine in the medical community had queued me into some of the good asthma centers in the country, but I wasn’t really sure how to get in to see someone.  For SARP all I had to do was inquire.  That morning/night/what-have-you I wrote a post on my blog which eventually led me to a few email exchanges with BreathinStephen, which eventually led to some emails with Dr. Wenzel of the University of Pittsburgh SARP site, and now I’m scheduling my first few visits with the site coordinator.

What is SARP?

The Severe Asthma Research Program is a comprehensive study on asthma in adults and children with seven clinical universities studying different aspects of the disease funded by the National Institutes of Health (NIH).  I’m not expecting a cure or a magic bullet, I’m most excited at the prospect of learning more about my condition and contributing to the body of data which could result in helping others.  Here’s their description of what they’re trying to accomplish:

The Severe Asthma Research Program was established with the mission to improve the understanding of severe asthma such that better treatment approaches can be developed.  SARP is not a clinical trial of new or old drugs.  Rather, its purpose is to gather an extraordinary amount of information ranging from responses to simple questions, to lung function, allergy and blood testing, as well as genetic and lung inflammation testing. This information,  gathered over a series of 4-6 visits, is databased along with information from thousands of others.  The data are  analyzed to improve our understanding of this disease and focus the development of new drugs targeted specifically to severe asthma.  Your participation in SARP allows your information to be joined with thousands of others to get a much “bigger picture”  of the causes and processes of severe asthma.

Over the course of several visits I’ll go through many tests I’ve already experienced and a few about which I’ve only heard.  Some of the tests have always been on the list of things to do if I was ever “bad enough.”  This is one way for me to get them done without having to bug my doctors about it.  A major bonus is all treatment and diagnosis through the study is free.  I just have to show up for it.

Up until now I’ve seen separate lung and allergy doctors who both try to treat my asthma, but are never really on the same page.  Allergies and asthma are so closely tied together but it’s been odd to have allergists constantly thinking I’m on way too many lung maintenance medications while the lung doctors think I’m on way too many allergy maintenance medications.  SARP will be looking at both chronic conditions simultaneously which could gain some new perspective.  I’ve already mentioned this to my primary care physician, who thinks it sounds like an amazing opportunity, and will be discussing this with my pulmonologist in a couple weeks.  I’m looking forward to sharing my results here and with a new community of severe asthmatics I’ve recently joined.

Asthma bag to the rescue

For years I’ve been carrying asthma-related things everywhere I go.  At first it was an inhaler or two in a pocket which eventually upgraded into a backpack, and now is my Maxpedition Jumbo Versipack.  I need many more things than a pocket or two on my pants can carry and putting everything into an easy bag with both a handle and shoulder strap makes it all the more easier.  I went to my main doctor today to follow up from the hospital trips last week and the nurse wasn’t sure where their pulse oximeter was.  Lo and behold I keep one with me at all times so she used it instead.

My man-bag, asthma-purse, asthma-bag, satchel, what-have-you regularly contains:

Maxepedition Jumbo Versipack Khaki/Foliage

Maxepedition Jumbo Versipack Khaki/Foliage

  • Maxpedition Jumbo Versipack
    • Pari Trek S nebulizer with AC adapter, car adapter and battery pack
    • Pari LC Sprint Nebulizer with wing-tip tubing
    • Albuterol .083% nebulizer solution
    • Peakflow meter
    • Nonin 9590 pulse oximeter
    • Cetirizine (Zyrtec)
    • Patanase
    • Current and last year’s asthma journals
    • Bandana
    • Pocket knife
    • CRKT large spork
    • Sunglasses in hard clamshell case
    • Black and blue ballpoint pens
    • iPad VGA and HDMI connectors
Contents of my asthma bag

Contents of my asthma bag

So this is what I’m lugging around all the time and my bag is by no means stuffed.  There’s always room to stash some business papers, grab a couple notebooks or even slide an iPad3 into one of the pockets.  Obviously I’d need to take a couple things out to go through TSA, but overall it’s something easy to always have ready and take with me.

Trying to take it easy

For as much as I love hanging out, watching movies and studying the finer points of The Big Lebowski, you’d think I’d have no problem with “taking it easy.”  I’ve been sick solid since mid-May this year.  I’ve been to the hospital four times, made way too many calls to my doctors’ offices, taken five courses of anti-biotics and if all the steroids I’ve been taking were metabolic I’d look like Schwarzenegger from Terminator 2.  You’d think this cycle of almost getting better and then trying to get back into what I shouldn’t be doing too early would have stopped by now, but I’m a bit of an idiot at times.

A few days ago I decided to just stay home from work next week.

It was about the time I thought I was doing ok and then no matter what I did my lung function kept dropping below 40% landing me back at the hospital on Thursday.  It was interesting to see how seriously the hospital staff took me showing up again.  While they were obviously trying to make sure I didn’t become worse, I’m sure others were trying to make sure they hadn’t released me too soon.  I ended up bouncing back fairly quickly and got some of the advice I get every time:

  • Don’t forget to take your medicine – taking medicine is like a part-time job for me
  • Don’t be afraid to come back if you need to – that’s happened twice this summer
  • Try to avoid your triggers – this is my other part-time job
  • Try to take it easy – sure, that can’t be hard to do

Yeah…taking it easy.  When I feel super awful I never leave my bed.  When I feel just slightly less awful I make an attempt to get out of bed and live on the couch.  While limiting my activity might sound like exactly what I’m doing, little things like getting more water, swapping a dvd, getting up to use the restroom, answering the door – these can all be way too much.  One thing I do pride myself on is pushing myself a little every day no matter what my current breathing condition is.  Some days that’s picking up the living room or doing laundry.  Other days it’s me walking to the mailbox and back.  On really good days it’s parking a half mile from my office and riding my bike after work.

Tonight a friend of ours came over to watch The Newsroom and I had been on the couch for hours.  Even after seven breathing treatments today I start feeling bad out of no where.  With all my “taking it easy” I’m now sweating, PF has dropped by 100 and my O2 saturation is down 5%.  So I take another treatment and ride it out.  An hour later my body has mostly chilled out.  The coughing started and I decided to just take some cough syrup instead of letting it get bad.  Now I’m back on the couch watching Anchorman (thinking about what a Newsroom/Anchorman mashup would look like) and wondering how late I’ll be awake tonight.  I’m wheezing out of nowhere, more awake with the medicine I’ve taken and the only real reason I have for all this is nocturnal asthma.  It’s just one of those things I deal with on a regular basis.

To be fair this is probably the best I’ve been in a while, even though I don’t feel good at all.  It’s weird how “normal” changes over time when you never feel quite up to par.  Once you get a little better you may think you’re a million bucks only to be reminded three months ago you would have been seriously concerned with this million dollar feeling.

A couple years ago I had to stay home from work for three weeks – doctor’s orders.  My lung function improved 300% over that time period and I actually felt “great” for most of that hiatus.  I’m not planning to stay home for almost another month, but this next week will be a great start in the right direction.  At least I’ve been able to buzz through some HBO series and really beef up my Netflix ratings.  That has to be worth something, right?

Nebulizer cleaning and maintenance

Update: Check out Nebulizer Cleaning and Maintenance Part 2

I throw around the terms nebulizer, neb, treatment and breathing treatment often on this blog and thought it might be a good idea to explain what they are and how to maintain them.

Breathing treatment:

A breathing treatment consists of inhaling a liquid medication, similar to what’s inside an inhaler, through a nebulizer that is attached to air, oxygen or an air compressor.  The “air” moves through a tube into the nebulizer which then turns the liquid medicine into a fine mist.  It used to be this type of medication took up to 20 minutes to complete.  Today with technological advancements breathing treatments can take as few as 15 inhalations or a few minutes.  For some people this is a more effective way to receive the medicine.  Improperly used inhalers leave most of the medicine on your tongue or the back of your throat instead of down in your lungs where it needs to be.  Others sometimes find a treatment more soothing on their throat than conventional inhalers.  The only real drawbacks are size, portability and power – but you can buy air compressors today that are the size of a couple decks of cards and many have options for battery packs and car adapters as well as the standard AC adapter to plug into an electrical outlet.

Nebulizers:

Nebulizers can come in many shapes and sizes.  Here is what I would call a classic example that I used to see in hospitals and doctor offices all the time.  I started using them in the 90s at home.

nebuilzer_classicYou’ll notice tubing, the nebulizer cup with mouthpiece and an extra tube.  The extra tube is attached opposite the mouthpiece to help channel the air you exhale.  These nebulizers are disposable.  They aren’t meant to be used for days, months or years (yeah, I used one for a couple years once without ever properly cleaning it) – and they should be rinsed after every use.

Eventually I started seeing nebulizers more like this where you can set them to dispense medicine only when inhaling or they blow wide open like the above example.  Depending on the situation you may need one or the other, plus it’s always nice to have options.

aeroeclipse-r-ban-reusable-breath-actuated-nebulizerThis is what I have most often seen/used in hospitals the past few years.  This nebulizer is an Aeroclipse R BAN reusable breath actuated nebulizer.  The breath actuated part is useful to make sure the patient gets all the medication.  As before, this should be rinsed out after each use as long as you’re not in an acute situation where you’re needing frequent treatments.  It’s even dishwasher safe as long as you put it on the top shelf.  Ever since I bought my first Pari Trek S compressor that came with the Pari LC Sprint nebulizers, I’ve been using those on both my Trek S and my old school Devilbiss Pulmo-aide.

pari_lc_sprint_reusable_nebulizer_kit_with_tubing_primary_205

This comes with wing-tip tubing, I think that means extra fancy like the leather shoes my grandpa loves, a mouthpiece and is basically breath actuated similar to the previous nebuilzer.  The LC Sprint should be replaced every six months and Pari provides a sticker to slap onto your compressor which lets you know when six months is up.

Cleaning your nebulizer:

While cleaning your nebulizer probably makes sense, I know many people who do not.  Besides the regular sterilization or clean arguments, you should remember that anything you breathe in through this apparatus is going straight to your lungs.  It’s  probably not a great idea to give yourself a cold, bronchitis or pneumonia from your medical equipment.  A standard cleaning can include a quick rinse with water and air drying, cleaning with hot soapy water, placing on the top shelf of your dishwasher (only if dishwasher safe) or deep cleaning with a solution.

Since I’ve been doing anywhere from 7-11 treatments a day I don’t always rinse the nebulizer after every use, but I make sure it happens at least once a day.  I also clean my nebulizers in a water/vinegar solution to kill everything off.  I’m extremely allergic to most molds and fungi in my region of the world and these are two things which can easily grow and thrive in the moist environment of a nebulizer.  In fact, if you have problems with mold at home, vinegar is what you need to clean and kill it.  Many use bleach which just “bleaches” the color out of the fungus/mold and spreads it around.  It’ll just grow back in a matter of time and the patch will be bigger.  To do this deep cleaning, I dismantle my nebulizer into its four pieces, place them into a mixing bowl, and do a 1:1 or 2:1 ratio of water and white distilled vinegar.  After the pieces soak for an hour I rinse them thoroughly, let them dry and I’m good to go.  If your nebulizer is not dried out and you need to do a treatment, just let the air run through it for 15 seconds or so and that should do the trick.

Replacing your nebulizers:

Once you have a good handle on cleaning your nebulizers, another thing to think about is when to replace them.  I do treatments all the time and really need to adhere to a standard replacement schedule.  Pari suggests swapping out my LC Sprints every six months.  To make this easy on myself I throw out my nebulizers, I keep one at home and a second in my EDC bag, on January 1 and July 1 of every year.  That way I don’t have to remember exactly when I started using them.  For those of you who might use your nebulizer much less frequently, once a month or maybe a few times a year, replacing your nebulizer probably isn’t that big of a deal as long as you make sure they stay clean.

One other often overlooked part in the nebulizer system is the air filter.  Similar to keeping your nebulizer clean so you’re not making yourself sick, all air compressors have an air filter somewhere that has a replacement schedule and should be followed as well.  Before I looked into this kind of stuff I had one nebulizer whose air filter wasn’t replaced for 6 years.  Luckily when I finally took it out the thing wasn’t crusted and disgusting, but I really should have been changing that out every six months just like my nebulizer.

Where do I buy this stuff?

There are different places where you can purchase equipment.  Some like to use durable medical equipment companies.  I’ve never had too much luck with them.  These companies often carry the minimum amount of options for inventory purposes and often will not special order.  I recently bought a new nebulizer/compressor kit and the durable medical company didn’t even let me choose what they were going to sell me.  I ended up buying online from JustNebulizers.com as I’ve been doing for some time.  They often have sales, I’m always receiving coupons by email and if I buy in bulk I get a discount.  Once I had a problem with my order and a quick phone call took care of everything.  Their customer service is great.  Buying online usually means you need to submit a form to your insurance for reimbursement or to have the amount added to your deductible.  While this may seem like a pain, I’m actually costing my insurance company and me less by buying them on my own AND I actually use what I want.  If patients need to be compliant with their treatment, it helps if they don’t hate it.

If you end up in the ER, hospital or doctor office receiving treatments often, just ask to take the nebulizer with you.  They won’t give you the compressor, but after you leave they’re just going to throw away the tube and neb cup.  Might as well get some use out of it at home.

Also, if you spend a decent amount on health care every year, you should save receipts and keep track of how much you spend on all this stuff.  Itemizing your medical expenses can save you a lot of money on taxes depending on your situation.

John Goodman as Benjamin Button playing Walter Sobchak

One of my fun things to do while watching movies is to imagine the different characters played by one actor, in different films and television shows, to actually be connected.  John Goodman, who played Walter Sobchak in The Big Lebowski (1998), is in an upcoming film titled The Monuments Men (2013).  Can you catch the bit in the trailer below where an older Goodman is playing soldier in WWII?  I can clearly hear Walter Sobchak in the back of my head saying, “You know Dude, I myself dabbled with pacifism at one point. Not in Nam, of course…”

Feel free to ask if it’s not apparent or you just want to chat about it.  The Dude Abides.

Summer 2013: ER Trip #4

Tonight I have a success story because I wasn’t too much of an idiot.

Today was like most days for the past few weeks.  I went to bed early in the morning with a neb to take the edge off only to wake up a few hours later desperately needing more albuterol.  I then spent the rest of my day watching Netflix, taking care of some work stuff and doing more treatments every three hours or less.  Right around 4pm the treatment’s effectiveness seemed drastically reduced and I started dreading the idea of having to go back to the hospital AGAIN being I was just released on Tuesday.

I just wrote that long post on Asthma Acting and decided I better heed some of my own advice for a change.  It was time to get some data and seriously consider the best plan of action.  My oxygen saturation kept dipping down to low 90s and my PF numbers were consistently in the low 400s to mid 300s.  This meant it was time to go.  Granted I was no where near as bad as Sunday, but I could tell I was on the cusp of a hardcore attack if I didn’t nip it in the bud.

Liz asked her mom to come over and hang out while Chuck was sleeping, I packed up my gear and then we headed over to the hospital.  When we pulled up Liz noticed one of her friends was working registration who immediately helped me into a wheelchair and told someone else at the desk my name and info.  That in itself is a HUGE help cause it’s pretty hard to talk when your lungs are only pushing 30% capacity.

They wheeled me back and a nurse got me started on 2L oxygen, hooked me up to a pulse ox and heart monitor, and then attempted to start an IV and take some blood.  Little did I remember she was the one trying to start lines on my right arm just a few days ago.

Nurse: Hey, weren’t you here just a few days ago?

Me: Yeah…

Nurse: Man, you were really freaking us out!

Which actually reminded me of a short conversation with Jeff the nurse when he returned Tuesday morning after the “Josh Incident.”

Jeff: Dude, you were making me really nervous last night.

Me: Dude, I was making MYSELF nervous last night.

It’s true, I’ve seemed to have that effect on people throughout my whole asthma career because I usually wait too long to do something.  This night was totally different.  Instead of five people hovering over me for 2hrs and trying to figure out how to make it stop, we had a much calmer situation with fewer people scurrying around.  Unfortunately it took four tries to get an IV started again because when I can’t breathe my veins like to dive deep like the Red October avoiding depth charges.  I’m just glad they didn’t order any ABGs.

Soon the respiratory tech arrived and I’m sure you can imagine my relief it was not Josh, aka worst medical professional of the decade.  She listened to my lungs, had me create a PF baseline, asked what my personal best is, listened to my lungs, got me started on a double albuterol neb and then got some information out of my little black notebook with follow-up questions to Liz.  This woman was good.  As soon as she saw all my documentation and found out this was my fourth time this summer, immediately after a hospitalization, she knew I was on top of things.  She knew my airways were just hella tight.  She could tell what my cough was doing to everything and when one of the nurses said, “I don’t hear any wheezing,” the respiratory tech responded with, “his airways are too clamped down to even let him wheeze.”

YES!  SOMEONE KNOWS WHAT THEY’RE TALKING ABOUT!

After the double albuterol ended, we followed that up with some pulmicort and solumedrol.  Slowly, ever so slowly things started to open up.  Should I have stayed home?  No.  Was it the right thing to come in? Yes.  Did I avoid a possible re-admittance into the hospital?  Most likely.

So a few hours later we got to leave and I followed tradition by getting some Taco Bell on the way home.  This is also the most healthy I’ve ever been after leaving a hospital.  Even though I’m all jacked up on drugs right now and will be awake for a while, I’m no where near feeling as awful as I usually do.  Take it from me, the guy who freaks out the hospital staff – know your limits and go to the hospital when you’re supposed to.  The only real damage would be the bruises all over my arms from this week.

8 IV lines 2 ABGs 5 Blood draws

8 IV lines
2 ABGs
5 Blood draws

Preparing for a new school year

Are you the parent of a child with asthma?  I came across this article today with a video interview (I can’t seem to embed it properly) and thought it’d be something good to share.

Back when I was in school things weren’t as closely documented and regulated as they are now.  I did have to provide information and a rescue inhaler (this got expensive over time) to the school nurse and the trainers just in case.  It seemed silly to me because there were always three inhalers available to me when I was at school.  Now that I think back on it there were questions at times why I even had my own medicine on me, but there was no way I’d give that up.

I did appreciate what Dr. Carel had to say about informing the nurse, classroom teachers and gym teachers.  Yesterday I wrote about adults feeling uneasy speaking out so you know kids aren’t always the best advocates for their lung disease.  They probably aren’t even fully aware of their symptoms and the implications of ignoring/not treating them.

I had the most consistent trouble with asthma while in high school and had extra problems my freshmen year because I had transferred in from a different school and it was like I had to prove myself in everything I did.  The guidance counselor didn’t trust my good grades to let me into the classes I wanted to take, for the first few months I was accused of having mental problems which were causing my asthma (yeah, they tried to force me to see the school district’s psychologist but my mom shut that down), and after I was forced to quit football I also told the band director I could no longer do marching band.  The worst harassment probably came from the band staff.

After that first month or two the nurse called my mom one day and said, “You know, he really has asthma…like bad.”  After Mrs Tuftee was on my side, nobody dared question my condition.  She even went ballistic on the band secretary one day for me which ended the snide comments every time I came to practice.  I ended up spending a lot of time in her office that first year and made friends with the other chronically ill student who suffered from lupus.  I wouldn’t say I was having fun missing class or seizing up that one time resulting in a 911 call, but it was nice to know I had an advocate.

Asthma Acting

Background:

When reading BreathinStephen’s post Asthma Guilt Trip I immediately identified with this story.

  • I have spent years hiding my asthma from family, friends, co-workers and strangers
  • I have often not gone or waited too long to go to the ER or call 911
  • My wife and I have been sternly talked to by doctors about waiting too long
  • I’ve been belittled and laughed at by medical professionals who don’t even really understand the disease or my situation
  • I too have been described as stoic which either makes medical professionals not take me seriously enough or get a little freaked out because I’m too calm
  • I’ve also been around fellow-asthmatics who pulled the asthma card way too often just to avoid assignments/activities at school or avoid situations at work, etc – and I don’t want to be generalized as “that kind of person”

A Little History:

Almost as far back as I can remember, I’ve never consistently felt well and haven’t had a great breathing day since some time in 2005-2006.  My asthma wasn’t officially diagnosed until I was 10, but it was obvious at an early age I inherited the hay fever and allergies rampant on both sides of my family.  Unfortunately the asthma was a family thing too as my sister is a moderate asthmatic, my mother is a mild asthmatic, my mother’s sister is a severe asthmatic and my grandmother has asthma/COPD even though she’s never smoked.  I also come from families of tough people who don’t complain about medical stuff and have high to extreme pain tolerance.

When I was four or five years old my throat kind of hurt but I didn’t think it was a big enough deal to mention it to my mom.  I had it under control until one night in the bath I leaned over the edge of the tub puking blood all over the floor.  Obviously this freaked my mom out a bit and a trip to the ER discovered I had tonsillitis so bad that my tonsils had been bleeding down my throat for who knows long.  This was the first time I remember a doctor scolding me for not taking my health seriously.  I didn’t know what the big deal was because it was just a sore throat.  Not a big deal, right?

A year or so later on my first day of First Grade I decided to try out this monkey-bar-ish contraption on the playground.  I was holding onto this overhead bar swinging back and forth like an Olympic gymnast from the 1984 Los Angeles games when my hands slipped and I landed squarely on my face.  Yeah it hurt, yeah my face was covered in blood and my mom never got the stains out of my shirt.  Instead of crying, screaming, freaking or doing something else silly, I looked around for an adult, spotted someone about 40 yards away, calmly walked over to the man and tapped his leg until he noticed and turned around.

Me: Mister, I hurt myself.

Mister: HOLY CRAP!  ARE YOU OK?  DOESN’T THAT HURT?

Me: Yeah, a little bit.

Mister: We gotta get you to the school nurse!  I can’t believe you’re not crying.

The school nurse assessed me, got me cleaned up, put some ice on my face and called my mom.  They gave me the option of going home or back to class.  I went back to class.

After my family moved to the Midwest region of the US, those hereditary allergies really started to kick in.  This was followed by a childhood filled with bronchitis, chronic rhinitis and several bad bouts of pneumonia.  In high school I decided to play football which some thought should be added to one of David Letterman’s Top 10 lists of stupid things.  Freshman year ended with doctors forcing me to quit during the pre-season.  Sophomore year I made to the 2nd or 3rd game, Junior year I played until the last game of the season and I made it through my entire Senior year.  My coaches didn’t understand why I tried to play football being allergic to grass, but I had an amazing pulmonologist who told me he’d help me do whatever I wanted – I’d just have to work hard for it.

The Signs:

My whole life I’ve always been told to smile more, be more expressive, lighten up, etc.  Part of this is just my quiet, reserved, introverted personality and most of it is how I’m medically feeling at the moment.  When many think of asthma symptoms things like wheezing, coughing or short of breath would definitely top the list, and this is a great list if you’re the poster-child for mild, uncomplicated asthma.  A few years ago I started hanging out at the HealthBoards.com page for asthma and found a much better list compiled by a fellow healthboard user.

It has been a year since I originally posted this information. Based on a thread on the allergy board, I thought it would be useful for those newer members.

Most people think of asthma and think wheezing, shortness of breath, tight chest and coughing. There are often other signs of pending attacks as well. I’ve found that the earlier I recognize a pending attack, the faster I can get a jump on treating it and trying to keep the severity of the attack down. Watching for these signs has become part of my asthma action plan.

Asthma Early Warning Signs:

  • itchy chin
  • itchy or sore throat
  • dark under eye circles
  • stuffy, runny or congested nose
  • tiredness
  • mood change–grouchy or extra quiet
  • itchy, glassy or watery eyes
  • thirst
  • sneezing
  • stomach ache
  • headache
  • fever
  • restlessness
  • eczema flare-up
  • sweating
  • heartburn
  • change in face color- pale or flushed
  • throat clearing
  • restlessness
  • heart beating faster
  • trouble sleeping
  • yawning

View original post at HealthBoards.com

I can’t tell you how many times I’ve finally sought medical attention for a severe asthma flare up only to be told, “well, I don’t hear any wheezing….so what’s the problem?”  There’s an issue that can occur when your airways constrict so tightly it is impossible to wheeze.  Sometimes I’ve had to do three nebulizer treatments back-to-back because once I got my airways opened up a bit the wheezing kicked in almost immediately, reversing the benefits of the medicine.  I’ve experienced almost all the above symptoms and have even come to rely on some of them to make sure I pay attention to what’s happening with my asthmatic self.  Another great help in recognizing symptoms has been my wife.  Filing taxes jointly isn’t the only bonus.  Being married has helped me manage my asthma in ways I never thought possible.  I have someone who is around me often and knows me better than most.  I asked Liz to come up with a list of symptoms she notices which others do not.  She even writes about me occasionally on her blog that gets quoted by places like The Atlantic.

I can tell you are having trouble when:

  • You are sitting extremely still instead of the subtle movements that people usually make, like fidgeting, shifting your weight, etc.
  • Your breathing begins to sound labored, rapid, slow, or otherwise different from normal.
  • You experience a sudden mood change or irritability that doesn’t really match the situation
Those are three biggies.

So why the act?

I don’t know if it’s just a regional thing, but whenever I’m at a doctor’s office (at least once every week or two) they have Sanjay Gupta on a TV along with other people talking about healthy eating, healthy lifestyles, managing chronic conditions, etc.  And because I’m in there so often I tend to see the same stories over and over.  A while back they were talking about heart attacks and how women are more likely to ignore signs and not want to bother anyone for help.  They even showed a short video starring Elizabeth Banks.

Even though this is a mother trying to wrangle kids, work and a household – this short film jumped out to me as a metaphor for how asthmatics handle their condition as well.  I don’t think I’m ashamed or afraid of my asthma and I definitely don’t ignore it – that’s almost impossible.  I think one of the reasons I do what I do is because I’ve experienced so many extreme reactions when letting people know I can’t breathe.  Either I’m ignored (I had a gym teacher senior year in high school refuse to let me retrieve an inhaler once during class – so I walked out of the gym with her yelling at me about detention) because I’m not acting out enough or people flip as if I’m about to stroke out and die.  Even though I have, at times, a life threatening condition that doesn’t mean I don’t want to feel “normal” like everyone else.

I like to think I’ve gotten better about the communication thing over the past five years.  Some of it has been absolutely necessary, but I believe it’s mostly me becoming better at managing my condition.  A good example of this would be trying to obtain a handicap parking space at work this summer instead of walking the one mile round trip every day from the far parking lot.  Of course parking services denied my request, but that’s another story for another day.  Education is key on this issue.  I recently read a story about a 17 year old young man who attempted to seek help during a severe asthma attack in a Tim Hortons only to have the staff completely ignore him.  Thank God a woman in the restaurant noticed the situation and called 911.  While this is one extreme example of a reaction to asthma, I believe the population could stand to be educated more on what the disease looks like and how to appropriately respond.  It would definitely help the estimated 25 million or more asthmatics living in the United States all breathe a little easier out in the world.