Tag Archive for albuterol

No albuterol yesterday

This may not sound like a big deal…

I didn’t take any albuterol yesterday.

No, I’m not lying, and yes this is kind of a big deal.  Last time I didn’t puff an inhaler or take a neb treatment was April 30th.  This has officially been the worst medical/health/breathing year of my life to date.  Most years the fall is a little rough until the cold weather comes, the plants die, and the farmers quit working in their fields.  That time of year has started and the cold temperatures have definitely brought some relief.  My allergies have been going a little nuts being in some dusty rooms here and there at work, but other than that I’d say I’m not too bad.

My next goals are to continue to increase my physical activity without overdoing it, and to continue to taper off the prednisone.  As much as I’d like to go running or lift some weights, appropriate levels of activity for me are things like walking, one flight of stairs at a time, using 25lb dumbbells at home, and slowly riding my bike.  Hopefully I can continue feeling not so bad and get back to feeling normal throughout the winter.

We’re not in Pittsburgh anymore

I’ve been trying to get albuterol for several weeks now.  You know, that most basic asthma medicine that everyone seems to have.  I don’t need inhalers, I’m running out of the nebulized form too quickly.  Most people I know with a nebulizer at home use it very infrequently, and when they do it’s maybe a couple times a day.  At one point this summer I was doing 10 treatments a day, which may sound excessive, but I was doing that many and more when I was in the hospital.  In August I inhaled 232 neb treatments and in September I did 210.  What that really means is I’m burning through the ampules much faster than I would normally receive them every three months.  I usually get 11-13 boxes of 25 whenever I order which just barely covers August.  Luckily I’ve tapered down to 3-4 treatments a day, but that doesn’t mean I’m not running short on albuterol.

My first step was to try and re-order from the mail-order pharmacy.  They told me I cannot order more until November 14th, and sometimes it takes two weeks after ordering for my medicine to arrive.  I then went to my allergist, who had originally written the prescription, to see if they could “fix it” for me.  I’m there quite often for injections and my conversation went something like this…

Me: Hey, I’m running out of albuterol too quickly and wondered if you guys could tell the mail order pharmacy I need more.

Nurse: Uh….ok, how much are you using?

Me: Well, right now I’m doing 6 treatments most days and I can’t re-order for another 7 weeks.

Nurse: <eyes get huge and skeptical look ensues> That’s too much.  Way too much.  If they say you can’t re-order, you can’t.

Me: Well, I’ve been pretty sick and have been in and out of the hospital.  I’m actually doing less now than I have been.  How am I supposed to get my medicine if I’m running out?

Nurse: <more crazy looks> Well, you’re just out of luck.

Debbie “the cool nurse”: What?  Of course we can get him more meds.  He’s been REALLY SICK this summer.

So Debbie the cool nurse writes a few notes down and talks to the doctor who calls me later to inform me anyone doing four neb treatments or more a day needs to be in the hospital.  Yeah, yeah…whatever.  So I call up my local pulmonologist’s office a leave a message saying basically the same thing.  He calls me back later to let me know I’m taking a lot of albuterol, which he told me to take, and I shouldn’t be doing this long-term, etc, etc.  He went ahead and sent in a new Rx for albuterol which should override the current Rx on file and everything is supposed to be taken care of.  Ten days later I still have no meds and mail order pharmacy has no recollection of ever receiving an Rx for me so pulmo re-sends the Rx.  Three days later I call up pharmacy again to check on the status and after letting them know what’s going on, they decide to just send me my albuterol early.  I have no idea why this couldn’t have been done before, but now they’re being nice.  The very next day my Rx from the pulmo magically appears and now they’ve left me a message all confused as to why I have two prescriptions for the same medication.

I looked at Liz and said, “We’re not in Pittsburgh anymore.”

Balancing asthma and life

Most of the time I feel like I’m able to balance my breathing with general living.  I may have to avoid going places or participating in certain things, but with the exception of flare ups, I like to think I do an ok job.  This summer has been the exception.  I was doing pretty well this past winter and spring until May.  Since then everything has been a bit of a blur.  I haven’t been to work in weeks and I’m also taking an online class at the moment.

I haven’t “been to school” for almost 10 years so while it’s a little bit of a culture shock getting back into the groove of things, it’s also not too bad because I don’t have to physically show up to class somewhere.  Most of the time this entails logging into the course management system at the beginning of the week to find out what discussion questions I want to answer, and then coming back later in the week to respond to my classmates.  Now that we’re into the semester there are more substantial assignments due, like the paper I’m getting close to being a week late on turning in.  I didn’t actually get a late start on the thing, I had my topic and key points figured out and found 20 peer-reviewed academic articles to use as sources when I was only required to have 5.  I of course had grandiose plans to knock it out on the way to Pittsburgh and while I was there, but that obviously didn’t happen.

I think one of the reasons I’ve been having trouble making significant progress is the discussion questions don’t take a whole lot of brain power for me to answer.  I read the chapter(s) from the required textbooks, check out the question, think about it, re-skim a section or two of the text and type away.  Writing this paper is requiring some higher-level brain function which doesn’t play well with my short attention span due to:

  • Constantly wishing I was lying down instead of sitting up
  • My oxygen saturation levels dropping whenever I’m up and moving around
  • Watching the clock to make sure I don’t wait too long before taking my next dose of meds
  • Is this a…what day is this?

Trying to work on the paper in Pittsburgh was almost laughable because all day every day my body was being stressed out doing what I like to call respiratory acrobatics.  Even if someone didn’t have trouble breathing, I think a normal person would be worn out from all the huffing/puffing, inhaling/exhaling, breath-holding and what have you.  To top it all off, I had to refrain from taking most of the maintenance medications that keep me going day after day.  Then every time they degraded my breathing to the pre-established stopping point, I’d be pumped full of rescue medication that gets me back to an acceptable level but also comes with a list of side effects that aren’t conducive to critical thinking.  I was telling my friend Steve I was in a constant state of sweaty or extra sweaty the whole time.  Even after we were finished at the hospital for the day I continued feeling like I was still in a constant state of “cool down” into the evening.

The good news is I’m still slowly getting better.  I was given the option to start tapering my prednisone early but decided to finish out my current dose before dropping down.  It was a good decision because just going to the grocery store with Liz yesterday and walking up and down a few isles left me sweaty, worn out, and having some serious trouble getting to sleep last night.  Even now, I’ve been lying down for the past 20min, my resting heart rate is over 100 and my O2 is 93-95% which is better than sitting up or moving around.  I’m about halfway done with this paper and am hoping to wrap it up tonight or tomorrow.  I’m guessing I should probably get my in-house composition expert to check it out before I turn it in.

Prednisone test

Today my prednisone starts tapering again.  This will be a test to see if I’m really improving or not.  So far I’ve stayed out of the hospital for just over a week, but I’ve also been on a high dose of prednisone for eight days.  Over the summer every time my taper has dropped down to a certain point everything flares up again.  There are some good signs though like I’m starting to sleep again and feel tired, and my voice is also sounding slightly normal.

I had the chance to consider returning to work this week but decided not to.  It’s just not worth it.  I’m still not able to be up on my feet all day.  Just doing what little around the house still leaves me worn out and exhausted.  I’m continuing to have bad spells at least once a day and I know just walking and talking at work would be detrimental.  I need to return ready to work, not dragging myself around and panting like I just ran a 5K.

My albuterol use has also decreased, which is wonderful.  I did over 200 neb treatments last month alone and would love to eventually get down to just four a day in the next couple weeks if possible.  For now I need to continue focusing on resting up, doing appropriate amounts of physical activity every day, stay on top of my school work and be ready for SARP.

Hooray for weather

In the midst of my summer-long asthma exacerbation I thought would never end, I finally caught a break courtesy of Mr Weather.  While it’s been hot and hotter for weeks and pollen/mold counts have been off the charts, we finally caught a cold front which brought the temperatures down 30-40 degrees and the ragweed is taking a break.  It may not seem like much, but for someone like me with horrendous allergies, it’s a Godsend.

anchorman_brick_weather

My Peakflow numbers have been stuck mostly in the 300 to 500 range for weeks and yesterday I hit 590 for the first time since July after a nebulizer treatment.  Now this temporary high was short lived and I was back down to 450 an hour later, but I’m still marking 590 as the high for the day.  On top of all that, my oxygen saturation leveled out to something reasonable and I only used albuterol 6 times where I’ve been doing 8 most of the week down from 9 or 10 previously.  It’s the little stuff that counts.

Today hasn’t been as great.  It was a little warmer, the plants were more active, and I had a bit of an allergy attack.  I did get 8 hours of sleep though, in shifts.  I think that’s the most I’ve slept in over a month and even though I woke up at 380 and 400 respectively, taking the edge off the exhaustion was totally worth it.  I need to see how I am tomorrow before deciding on work for Monday.  I’d love to be back, but I made the mistake of going back too early several times earlier this summer and paid for it dearly.  Other than that I’m just counting down the days until SARP.

Summer 2013: ER Visit #6

Another week, another trip to the ER.  They’re really starting to know me there.

  • Our friend Haley got me checked in at the registration desk
  • The triage nurse remembered me
  • The nurse who got me into a room has seen me at least 3x this summer
  • The respiratory therapist has helped me 3x now I think
  • The x-ray tech has scanned my chest at least once before
  • Also recognized Dr Wilson who I’ve seen before and has an EXCELLENT bedside manner

So why aren’t you better yet?

This is an excellent question I’ve heard from a few people and have also asked myself.  This whole past week has been a rough one with asthma attacks on five days out of seven.  One was caused by 2nd hand cigarette smoke and the rest were allergy/weather related.  All five times this past week I’ve had to decide whether or not to go to the ER.  My peakflow numbers were at 50% or below, my oxygen saturation has been 89% to 93% pretty consistently, I’ve had trouble walking and moving around, and I’ve been mentally fuzzy.  These are all good reasons to seek medical attention.  Tonight was slightly different because my nights are usually bad between 10pm and 4am, and this time my symptoms fired up around 7pm.  I was short of breath, experiencing varying degrees of chest pain for different reasons, coughing, and my nebs were working but not lasting long.  These combined with my gut feeling of “it’s going to get much worse” in the next hours are what made the decision for me.

The ER was packed on arrival and we later found out that was the least busy it had been since 1pm.  Liz and I waited a little before being taken back, but we heard others being told there was a three and a half hour wait.  Fortunately I bring all my meds with me so I just hung out and nebbed until it was my turn.  I don’t know if it’s because they recognize me, I’ve been in so many times this summer or I’ve just learned how to communicate effectively…but lately I tend to get asked what I think should be done.

RT: Aw man, you’re back again??  So what do you think we should do?  Albuterol?  Duoneb?  Want some pulmicort?

I had just done an albuterol in the waiting room so we followed up with some duoneb.  It helped, but didn’t open me up much and I quickly regressed to where I was earlier.  I was glad this happened because it made a point as to why I’ve been nebbing 8 to 10 times a day and the relief just isn’t lasting.  They got me started on some salumedrol, as usual, and then followed up with a pulmicort neb.  Pulmicort is a steroid which addresses swelling in the airways and is different from bronchodilators, like albuterol and ventolin, which help address the muscles constricting around your airways.  This really helped to open my airways and allow me to breathe more deeply for a longer amount of time.  In the past I’ve had a combo inhaler (advair, symbicort, dulera, etc) along with another steroid inhaler acting as a booster for maintenance.  This summer I’ve been wondering if taking pulmicort or asmanex in addition to the dulera would help.  I’m adding this to my list of questions for the pulmonologist.

What next?

Lots of taking it easy, that’s what.  I’m working on some good questions for my lung doctor when i see him this week and am counting down the days to Pittsburgh.  I’m not expecting to be magically cured in Pennsylvania, but I am looking forward to another opinion and getting some of these tests done that have always been on the extreme/unnecessary list.  Maybe they’ll find something new and at the very least I’ll be contributing more data towards new treatments and understanding of how asthma functions.

I was glad to see the nebulized steroids make such a difference tonight.  That would probably do the trick for me at home when I’m up all night not being able to breathe deeply enough.  We also noticed my oxygen saturation dipping to 90% and below most of the time when not on 2L of supplemental oxygen.  This hasn’t really been as much of an issue before and I wonder if that means anything.  For now we’ve once again bumped up my prednisone taper and I need to return to the ER if things become bad enough to warrant another visit.  I also talk to my allergist about doubling my Xolair injections starting this month.  With allergies being so bad and mold season around the corner this might help me get a head start before leaves are falling and the combines are running.

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

Final phase out of CFC inhalers

In an effort to save the planet, regulations have been enacted by the EPA to restrict certain materials and products that hard the environment.  Obviously these laws were created to target big manufacturers, chemical companies and industries pumping out the pollution, right?  Well an easier target was inhalers containing CFCs or chloroflurocarbons.

In 2008 albuterol inhalers began the phase-out process.  New versions of both rescue and maintenance inhalers started having HFC attached to the end which stands for hydrofluorocarbons.  This new propellent is safer for the environment, sends the life-saving medicine out much less forcefully and no one seems to like them.  The actuators also clog much more easily with HFCs than CFCs, but many asthmatics don’t know they need to clean their medicine delivery system.  This results in less medicine being delivered over time further exacerbating the the whole “not breathing” problem.  Did I mention the cost of HFA inhalers can be three times more?

I’m not your average asthmatic and therefore I’m not on average drugs.  Way back in the day we found out Maxair, pirbuterol acetate, worked much more effectively for me than the standard albuterol sulfate inhalers.  There are currently two CFC inhalers still on the market that will no longer be available after December 31, 2013 and one of those is Maxair.  I’m really not looking forward to switching and am glad I’ve had a few extra years to wait.  There have been some improvements to inhaler technology in general such as more powder-based inhaled medications on the market.  Examples of these would be pulmicort, advair, seravent, spirivia and azmacort.  There have also been some strides taken with miniature nebulizers which are much easier to transport than the heavy duty models.

For now I’m just going to continue to try purchasing my Maxair.  I need to put in an order through the mail-order pharmacy before December hits.  I’ve asked my doctors several times about what I need to switch to and they act like it’s no big deal.  I really hope it isn’t.hfc-vs-cfc_inhalers