Archive for Life

Another ER visit

This summer is truly turning into record breaking asthma for me.  As of today:

  • I have 22 days of prednisone under my belt with another 27 on the way
  • Two courses of anti-biotics
  • Two ER visits
  • Four PCP visits
  • Three Pulmonology visits
  • One Allergist visit
  • About 120 nebulizer treatments

Wednesday was brutal outside.  The temperature hit at least 90F with humidity to add to the heat index.  I know the heat index isn’t “real” but it sure does affect people like myself with pulmonary conditions.  I’ve been trying to figure out a better parking solution at work because the closest lot with my level of parking access is 880 walking yards away.  When I’m feeling ok, that mile of walking every day is great, but I’m not ok right now.  Ironically my doctor wrote a letter asking for a parking accommodation and later that day I ended up in the ER due to an exacerbation from walking around campus.

Trips to the emergency room or emergency department are never enjoyed or wanted.  I fancy myself as “tough,” never think I’m that bad and in the moment usually suffer from “asthma brain” fueled by a lack of oxygen.  It’s good to have someone around to make the decision for you or easily identifiable metrics defined to know when to go.  Walking around outside that day was causing my lungs to ache with every breathe which eventually led to dull, then sharp pain.  Around 6:30pm I’d rank my inhalation pain around 7/10, was shaking uncontrollably and had tears streaming down my face.  And that’s ok cause strong men also cry…right?

Whenever I recount stories like this, they sound ridiculous and of course I would try to force someone else to seek medical attention if they were in my situation.  What I had going through my head that night were things like:

  • There’s no way it can last that much longer
  • I’ve been worse before (it’s true)
  • I’d rather wait to incur more medical costs until after 7/1 when I have more FSA funds to pay for it
  • I’ll be ok

My wife started threatening to call an ambulance, and while I do respect all my paramedic friends, I hate taking ambulance rides.  Eventually I agreed to go if she would drive me, and she did.  I had already done four nebulizer treatments at home that day and by the time I finally went to the ER, my pain had dropped from 7/10 to about 4/10.  With the heat, humidity and thunderstorms, the ER was packed, however, since I’m a bit of a frequent flyer they recognized me when we walked in the door and let me cut in line.  As they were wheeling me to a room I began to notice all the people standing/sitting in the hallways being treated so I was grateful for a bed.  They got started on me right away with the standard tests.  The “asthma” wasn’t bad, I just wanted to punch a wall every time I breathed.

The respiratory tech was a good one that night.  Instead of answering a bunch of questions, I handed over my notebook which is when they start taking me seriously.  I’m basically on high doses of every type of maintenance and rescue medication in addition to the anti-biotics and prednisone I’ve been taking.  The attending physician ordered blood work, a chest xray and the dreaded ABG.  This was the first time a respiratory tech performed a blood gas test on me, usually they bring in a phlebotomist and it goes horribly.  This dude got it right away and I can actually move my wrist – major bonus.

Unsurprisingly they didn’t find anything out of the ordinary, well that is from what’s already known, they got me patched up and sent me home.  They did pump me full of morphine though which really made it easier to breathe.  I’m sure Rick James would tell us it’s one hell of a drug, but that’s a bit rhetorical.  At this point my body is just too tired, stressed and worn out from 6 weeks of asthma and not sleeping.  I need to start seriously looking out for myself the rest of the summer to avoid any more complications.  I sometimes joke about people dying from asthma, but it’s true.  I’m fortunate enough to have a special lady friend looking out for me, a good team of doctors and a boss who is accommodating.  I don’t know how I became so lucky some days.

Turns out trees really are important

I have a love/hate relationship with trees.  On one hand they filter huge amounts of pollution from the air, but on the other hand they produce pollen which makes my eyes swell and air sacs hurt.

http://www.pbs.org/newshour/rundown/2013/06/can-lack-of-trees-kill-you-faster.html

In the past ten years or so 100 million trees have died due to a beetle in the MidWest and Eastern sections of the US.  A rise in cardiovascular and pulmonary disease has been directly linked to the loss of these free “HEPA filters” nature has provided.

I recently read an article labeling Louisville, KY as America’s fastest warming city.  The main contributing factor to this rise in temperature is a lack of tree cover.  Who would have thought shade was that big of a deal?  We’ve in the process of taking down some dead trees where we live.  I want to make sure we plant some new ones to replace the air filters.

Final phase out of CFC inhalers

maxair

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

 

Are you at risk for an asthma attack?

A recent study in the UK surveyed more than 50,000 asthmatics asking them about risk factors and if they thought they were at risk for an attack.  As usual with many self-selecting surveys, 52% of the respondents thought they were at risk when 93% of them actually were.

Obviously these results apply to the US where I live as well, and I know at one point in time I was one of those pretending their asthma was under control.  While many of you don’t need to carry an inhaler, allergy medication, nebulizer and peak flow meter with them everywhere they go, it never hurts to have a current inhaler on hand.  I’ve actually had a few attacks in my life where I thought I could actually die, and no one likes getting ABG tests.  Stay safe guys.  Take your maintenance meds and carry an inhaler, please.

Write stuff down

About three years ago I was living in New Hampshire and having a hell of a time getting doctors to recognize my severe, uncontrolled asthma.  I’m not your average patient, but is anyone really average?  My symptoms aren’t the normal ones, I’ve historically performed much better on tests than the average pulmonary patient, and I don’t complain loud enough.  I have years of data and records to back things up, but how many doctors really take the time to study and comprehend all that paperwork?

The solution came from my wife, an English professor, who told me to write stuff down.  The answer was quite simple because when a doctor asked, “How have you been,” I could barely remember all the details from last week, let alone how they compared to last month.  It started with an excel spreadsheet where I would enter peakflow numbers.  I performed three readings before and after taking rescue meds, averaged the three numbers in a series and charted the high, low and average lines.  The first doctor I showed this data to laughed at me and made something up as to why the empirical data was irrelevant.  There’s a long story about how I fired this doctor, but this really isn’t the time or place.  The point I do want to make is every single doctor who has seen my record keeping since then has been blown away.

Today I keep a pocket-calendar/notebook where I write down all non-maintenance medications I take every day, record intentional exercise or physical activity and any events that may have contributed to an attack or flare.  I have written all known medical conditions, keep an updated list of medications and physicians, and I separately track any major events and the course of action taken.  This can be a large amount of information to record so I have devised a system of letter abbreviations to save space.  In the case I do need more room, I just have to flip a page or two where each day has a much larger and dedicated portion of the page.

notebook_may2013

There’s an example of my notebook from last month so when I follow up with a doctor and they want to know how I’ve been, there’s something to which I can refer.  The best part is I can flip to any previous month, and if I have last year’s notebook with me – that can be compared as well.

This is what got my complaints noticed.  This is what gave doctors a more clear picture of just how bad I’ve been feeling.  This is what finally got me treated and better.  At times it feels like a job, but I wouldn’t be surprised if this act of writing saves my life some day.

Calling in re-inforcements

After my 3rd PCP visit and kenalog shot, I got a call in to my pulmonologist’s office about an acute visit.  Unfortunately my rock-star lung doc is on some much needed vacation and fortunately I was able to see one of the NPs this morning.  They aren’t sure exactly what’s going on, but I’m at least being taken seriously.  After I finish the ER Z-pack, I’m starting 10 days of Levaquin, and my prednisone taper is being extended and lowered by smaller increments.  Next week they’re going to monitor my oxygen saturation at night to make sure the CPAP is working properly.  I think I have enough prednisone now to start my own pharmacy.  I’m just hoping I can continue to get at least a tiny amount of sleep.

On my outing today:

  • Had to stand in line for check-in at lung doc while the receptionist gossiped on the phone and kept another old woman with oxygen tank waiting
  • Another old woman, with oxygen tank, cut in line while I was waiting to check in
  • Some maniac in a Cadillac slammed into a Suburban while crossing 2 lanes coming within feet of my car and hitting another car in the hospital parking lot
  • I got lots of stares at Taco Bell while getting some tacos for lunch
  • I had to stand in line at CVS for about 20 min
  • A woman cut in front of me to buy M&Ms cause they’re more important than my prednisone
  • Some other dude tried to cut in front of me just because
  • I thought I wasn’t going to be able to walk out of CVS without sitting down for five minutes

I’ve had a rough morning and I still hate The Eagles.  Four puffs of maxair, a double abuterol nebulizer and an hour of sitting have helped a lot.  I think it’s time to start a movie.

No one likes a braggart

So I had been slightly over-impressed with myself for making it through this March without any major pulmonary incident.  The Ides of March slipped past with no hemoptysis, and I seemed to be well on my way into the summer of “the worst allergy season ever” without many of the symptoms I keep reading about on Facebook.  I saw my pulmonologist at the beginning of May and things seemed ok.  My lung function was slightly down from last time, but I seemed to be holding my own…and then it started.  The flare up that that required me to inhale 61 nebulizer treatments last month, and take two unsuccessful rounds of prednisone.

I think Rick James says it best – Prednisone is a hell of a drug.

My first course of steroids was five days at 50mg.  That kind of quick punch can usually get me back on track if I’m not too bad.  I started feeling better, but went downhill immediately after.  Round two started as a 15 day taper which got me feeling better on day two only to start getting worse on day three.  Day four ended with a coughing fit on the floor after unsuccessfully attempting to get up off the couch and walk 20 feet after Game of Thrones.

My ever-awesome wife got me over to the preferred hospital in town post haste.  They saw me coming and greeted me with a wheelchair at the check-in counter to immediately get an IV started for salumedrol.  I have to laugh sometimes when I hear people complaining about emergency room visits and waiting hours for treatment.  Whenever I show up, I get the platinum club treatment.  Liz says they had people hovering over me like the time I had pneumonia, the big difference being my oxygen saturation stabilized without too much effort.  I was able to leave after not too many hours, avoided a hospital stay and celebrated with Taco Bell.  My prednisone taper was replaced with a much stronger dose and started some anti-biotics.

Yesterday I started feeling much worse again after all those IV steroids wore off, but was able to keep things under control with the nebulizer.  This morning I followed up with my PCP and the nurse told me I look like shit.  That was followed with, “will you slide your shorts down please,” and a shot of Kenalog into my posterior.  That empowered me to get a lot of work done at home today, but I’m sure I still come off as a crazy person who hasn’t slept for days.

My pulmonologist is out of town, but I have an appointment with his NP later this week.  A buddy of mine asked if I’ve ever thought about getting totally checked out at one of the big pulmonology centers in the country and that’s actually not a bad idea.  Fortunately I really like my lung doc here, he was totally in my corner before we moved and still is now that we’ve moved back.  It often seems like there’s still something not yet diagnosed with all the problems I have.  It’s been a couple years since I really pushed for some answers, I think there are still more out there.

Acute flare-up Day 29

My efforts to post daily have been thwarted by another asthma flare up.  Fortunately I’ve stayed out of the hospital so far this calendar year, but there were a couple times in the past weeks that I should have visited the ER.  I’m currently on my second round of prednisone and feel like I’m riding the Crazy Train.  The good news is I’m actually starting to feel better and I’m lucky enough to have a job that allows me to do work from home.  If you’re also suffering from asthma right now, here are some tips to get better more quickly.

  • Rest – it can be hard to just do nothing, but sometimes that’s what you need to do.  It’s not always possible to stay home from work or have someone else take care of things, but try to at least slow down.
  • Lots of fluids – water is important by itself, but can really help make a difference for asthmatics.
  • Avoid irritants and allergens – try staying in doors and limit outdoor activities.
  • Seek medical attention if necessary – when my oxygen saturation gets low, I acquire something called “asthma brain.”  I can’t seem to think clearly and make poor decisions.  Make sure there’s someone around to check up on you and don’t be a hero.  See the doctor if necessary.

I’m hoping to make a full recovery soon because I have a film festival to attend in July.  The Dude abides.

Asthma Intervention

I’ve watched nine seasons of A&E’s Emmy award winning show Intervention.  I know I’m no expert, but I’ve learned a lot about controlled substances and how you’re supposed to interact with addicts.  If I were to personify my lung disease and participate in an intervention for its downward spiraling life choices, the first episode that comes to mind is Allison** who huffed compressed air.

 

I'M WALKING ON SUNSHINE!

I’M WALKING ON SUNSHINE!

 

Dear Asthma,

I’m here today because I love you and care about you.  The happiest day of my life was when my doctor diagnosed me with lung disease and prescribed some inhalers.  I felt almost instant relief and had an excuse to why I constantly felt like crap and why people thought I was always in a bad mood.  You gave me an immense amount of trouble all through high school, but we made amends and had a good run during college.  Seven years ago your bad choices came back and started severely limiting my quality of life.  This is why I want you to accept this wonderful gift we have to offer you today.

Asthma, your addiction has affected me in the following ways:

Towlie Getting High on Computer Duster

  • Every time I make fun of someone on TV or in a movie who is only bench pressing 95-115lbs, you remind me I haven’t been to the gym in a year.
  • If I laugh too hard at something hilarious, you give me a coughing fit.  Stoicism is harder than it looks.
  • I used to love blowing stuff up.  Remember that one winter we buried all those firecrackers in snowbanks and watched them soar?  You’ve made me so reactive to any smoke I can’t even attend a bonfire or stand next to a cookout most days.
  • You ruin vacations and holidays.  Last year you made me so sick at a film festival they gave me an award for hardest traveled.
  • I spend 25% of my net pay on you for doctors, treatments and prescription drugs.  That doesn’t even account for all the Mt Dew and Dr Pepper.
  • I carry a bag full of medicine everywhere I go and my friends call it a man-purse behind my back.
  • At night you give me sharp pains in my left lung and make it hard to breathe.  I often stay up all night watching Netflix.  You had my sleep patterns so messed up in 2010, I completed a 28 movie marathon in less than two days.
  • And I’m not even able to regularly post on my blog every week!

What happened Asthma?  You used to be cool.  Yeah you held me back a bit, but the medicine always kept me going.  I care about you, Asthma.  This is why we’re providing you an opportunity to…

Asthma bolts for the door while the moderator sends the film crew to chase it into the hotel parking lot.  We should have seen this coming.

**Cause we all know Asthma would mimic the Mad Hatter

Breo Ellipta approved

About a month ago I found an article saying the FDA was favorably looking at a new drug called Breo Ellipta.  It appears they’ve approved it so it’s just a matter of time before someone you know will be on it.  It is important to note this has not been approved for treating asthma.  The other big Asthma/COPD players are Advair and Symbicort.  I think Dulera has only been approved for Asthma.

The one big difference I noticed about Breo Ellipta is the once a day dosage, similar to Spiriva.  Most combo inhalers require twice a day doses and patients often have a hard time following doctor’s orders.  I still haven’t seen a picture of what Breo Ellipta looks like, but am guessing I’ll see a poster soon enough in a doctor’s office.