Archive for September 2013

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.

My new doctor

One of the goals of SARP is to identify and better understand the different types of asthma, as well as finding ways to better focus treatment.  Check out this video BreathinStephen recently shared.

Yep, that’s my new doctor.  I think I’m in good hands.  If you’re a fellow asthma sufferer, I can’t recommend participating in SARP enough.  There are seven locations around the United States and hopefully one is close to you.

SARP visits 1 and 2

After thinking, “I really need to go get checked out at an asthma clinic or center,” for a few months and finally deciding I wanted to participate in SARP at the Pittsburgh location, I really had no idea for what I was in store.  The past 20 years have been frustrating for me as an asthmatic, trying to find doctors who take the time to really understand my struggles without dismissing me, and who don’t dismiss me/give up up when I don’t respond to standard treatments.  Every employee we’ve encountered at UPMC has been the nicest, kindest, most thoughtful, caring, understanding, knowledgeable, educating, sympathetic and empathetic medical professionals I’ve ever experienced outside of a couple individuals or personal friends.  I cannot say enough for the people here and the personal care and attention we’ve received this week.

A few examples:

  • I have the personal emails and phone numbers of my doctors, nurses and technicians who have encouraged me to contact them for any reason I feel is important.  I was already receiving 12hr turn-arounds on emails sent over the weekend before we arrived.
  • Liz needed to jump online in order to meet with her class during my tests yesterday.  The research coordinator made sure Liz was online and settled in a quiet waiting room, even offering her own computer if Liz’s had any issues connecting to the hospital network.
  • Absolutely everything has been explained to me in great detail with every opportunity to ask any question I desire.
  • I haven’t had to defend or explain any of my symptoms or medical history.
  • I’ve never once been told, “You’re not normal,” “We’ve never seen/heard of this before,” “We don’t know what to do,” or “I don’t think you really have asthma.”
  • I haven’t had to talk to anyone who understands only asthma and not any of the secondary, accompanying conditions and diseases.
  • Everyone has been interested in Liz and I as people, not just my test results or medication list.
  • The main nurse and asthma educator spent as much time as possible in between tests to ascertain what my asthma is like, how I manage it and to inform me of anything that has come about in recent literature and studies that could improve my status quo.
  • No one has acted like my breathing difficulties are all in my head just because I don’t respond well enough to two puffs of albuterol or some prednisone.

Tomorrow I see my new doctor who has been out of town these past two days.  We’ll go over the test results and try to make a plan of action of what to do next.  I have not found a single negative thing about this doctor online.  Everyone has only amazing, not good or great but amazing, things to say about her.

For anyone out there suffering with asthma needing answers, I’d highly suggest checking out the Pittsburgh Asthma Institute or a similar facility.  I think it’s fair to say you’ll have a great experience.  If you do end up coming here, definitely check out Family House for a place to stay.  It’s at least half the price of any hotel you’ll find in the area, the staff are extremely friendly and helpful, you have access to an Iron Chef kitchen area and there are shuttles to take you between Family House and any of the UPMC medical facilities.  It’s not a five-star hotel, but it has everything you need with perks you won’t find elsewhere.  If you are seeing any doctor or receiving treatment in the area requiring you to stay overnight, you are eligible to stay at any of their locations.

100 worst cities for allergy sufferers

Do you have seasonal allergies?  Do you know how your city/region ranks?  Check out AllergyCapitals.com’s 2013 list of the worst cities for allergy sufferers.

1. Wichita, KS
2. Jackson, MS
3. Knoxville, TN
4. Louisville, KY
5. Memphis, TN

96. Daytona Beach, FL
97. Colorado Springs, CO
98. Stockton, CA
99. Sacramento, CA
100. Portland, OR

The Breathe Easies

This isn’t breaking news, but I just came across some new PSAs geared towards children involving a puppet band named The Breathe Easies.  It’s part of an asthma education program heading up by the Ad Council and the Environmental Protection Agency.  The videos and more can be found at NoAttacks.org

JUST CALM DOWN

It doesn’t take a severe asthmatic to know stress can cause a variety of negative side effects.  One important factor to remember if you can’t breathe is to stay as calm as possible throughout the ordeal – sounds easy, right?

I’m not a very high-strung person and grew up in a family that didn’t really complain about health problems.  In fact there are probably many times I should have gone to the ER in the past but I haven’t because in my mind it just wasn’t “that” bad.  I always distinctly remember an ambulance trip to the ER back in 1995 where the paramedics showed up and were having me hold the tank for the supplemental oxygen they were giving me as well as a few other things.  Another person showed up and immediately wanted to know why I was having to hold everything while having breathing issues.  I think the first two guys were volunteer firemen.  They were cool and all, and before the ambulance pulled away with me in it they decided to start an IV line.  This is also the first time I remember someone having to dig and dig and dig to get one started.  Why’s that – oh, another reaction to stress.  When your body is undergoing trauma one thing that can happen is all your veins hide.  They eventually stuck me in the wrist and I still have a tiny scar from it today.

Eventually we got to the ER where they assessed me, gave me some breathing treatments and what have you, and eventually sent me home.  It wasn’t what I’d call a “bad episode” in the grand scheme of things but I do distinctly remember a nurse or respiratory technician who kept getting in my face and yelling,

JUST CALM DOWN!  YOU NEED TO CALM DOWN!  YOU’LL BREATHE BETTER WHEN YOU ARE MORE CALM!

The problem was I wasn’t freaking out.  I was just lying there, on the bed, similarly to that CD Manolo found on the floor in Burn After Reading.  If something similar were to happen today I’d most likely respond with, “calmer than you are,” but The Big Lebowski was just a gleam in Joel and Ethan’s eyes back then.  I wasn’t thrashing, straining, hyperventilating or sporting crazy eyes.  I was trying to chill out and this woman was screaming in my face.  Kind of counter-productive if you ask me.  Fortunately medical people I’ve dealt with in the past 15 years seem to understand yelling at asthmatics won’t help them breathe any better.  My mom later mentioned to me this would always happen to her sister, a fellow severe-asthmatic, in hospitals and emergency rooms.  I’m glad to see this is really a thing of the past.

1146419_708893167043_2137206112_o

It’s been ten days since my last ER visit and I’m starting to see some real progress on getting better.  I don’t have daily coughing fits and I’m not constantly feeling the need to lie down.  My peak flow numbers are slowly creeping up to 600 and I haven’t dipped into the 300s for several days.  I even had a decent ride on my bike yesterday where I rode longer than 30 minutes.  I don’t think that’s happened for two months or more.  This coming week I’ll be seeing a new doctor for evaluation and diagnosis as well as beginning my participation in a research study, after which I hope to return to work.  With everything going well, I’m feeling better, new doctors on the horizon, and life getting back to normal you’d think I’d be stress free right now.  Well I have four words for you in the form of an acronym – FMLA.

The Family Leave Medical Act of 1993 is a law requiring employers to grant eligible employees up to 12 weeks of unpaid leave from the job within a 12 month period to:

  • Care for their own serious health condition or that of a parent, spouse or child
  • Care for a newborn
  • Adopting a child or the foster care of a child

That’s not totally comprehensive, but it’s basically what the law does.  If you need to go on either full or intermittent leave, paperwork should be provided by your HR department which needs to be filled out by a doctor documenting the medical necessity of you not being at work.  This isn’t the first time I’ve needed to use FMLA and most definitely won’t be the last.  I’ve always thought this was no big deal with my breathing problems, but this summer has been interesting to say the least.  You would think six ER visits, a hospitalization, six courses of anti-biotics, three months of prednisone, numerous xrays, CT scans, blood tests and more doctor visits than I’d like to tally would make it obvious I’m not trying to “scam the system.”  While most of my experiences this summer have been positive, I’ve also had a less than awesome time dealing with my HR department at work.  My actual supervisors have been very understanding and great, it’s just been trying to get everything squared away with human resources, on which I don’t feel the need to get into specifics.

So that’s what is currently stressing me out.  It’s not the breathing, being stuck at home, shortness of breath, wheezing, coughing, insomnia, medicine, needles, breathing treatments, hypoxia, bilateral subsegmental atelectasis, bronchitis, possible pneumonia, chest pain, not working, paying bills, the shakes, being prednisone crazy, trying to care for a three year old or figuring out what to name our new child that will be here in a few months.  It’s HR and FMLA – two things which are supposed to be looking out for me and making sure I’m not getting screwed.

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.

My kid loves Alton Brown

As a parent it can be hard at times figuring out what’s no longer appropriate for “family time” as you transition from being that cool adult to someone with a little kid.  When Chuck was a baby she would often be fussy and fidgety for Liz, but would lie completely still for hours with me watching whatever I happened to be interested in on TV.  Since my asthma has been bad for much longer than Chuck has been alive, that means many, many hours of her early life were spent watching TV and movies with me.

At first I’d just watch whatever knowing she wasn’t paying attention, couldn’t exactly see what all was going on, and didn’t really understand anything.  I think it was around 6 months or so that we quit letting her sit in on R-rated stuff and definitely avoided all violence and anything sexual.  Eventually we started watching “kid stuff” with her but are fortunate she never got into some of the more annoying bits of children’s programming.

These days her favorite things on TV include:

  • Doctor Who
  • Star Wars (the original trilogy)
  • Power Rangers Samurai
  • Lord of the Rings
  • And anything with Alton Brown

AltonBrown_bowling

Yes, that’s correct – my kid loves Alton Brown.  We lucked out being he’s one of the coolest food personalities on TV, is a great educator, and does an amazing job with Good Eats and Iron Chef America.  Last night when it was getting close to bedtime Chuck asked…

Could I sit in the living room for a while and watch cooking shows?  Alton Brown, let’s watch Alton Brown.  Oh, and I’m hungry.  I need a snack.  I didn’t brush my teeth yet because I wanted to drink some juice.  Do we have any juice left?

So I fired up an episode of Good Eats from season 14 and got her some cheese and crackers from the kitchen with juice.  I’ve always enjoyed cooking and have tried to include Chuck whenever I’m preparing something.  It’s kind of cool that she’s so interested in food.  She loves olives, extremely sharp cheddar and asparagus, yet still refuses to eat eggs and mashed potatoes.  Every time Alton makes something Chuck wants to know whats going on, loves answering his rhetorical questions and always asks me, “Can we make that some day?  I want to try that.  It looks good.”  Occasionally the questions can become fast and furious and after a long day of questioning it’s a little tiring.  I just keep reminding myself – hey, at least she’s not obsessed with the latest Disney kid personality or Miley Cyrus.

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.

New treatment options

Since I last saw my pulmonologist I’ve been in the Emergency Room four times and admitted once.  First thing out of his mouth was, “Wow, you’ve had a rough two months!”  We talked about what’s been going on, symptoms, how the meds are working, prednisone, etc.  Dr M said it was obvious every time my taper gets down to a certain level everything flares up again.  He said I basically have three options.

  1. Go to an asthma clinic and get a full work-up.
  2. Look into bronchial thermoplasty
  3. Become steroid dependent

I first heard about bronchial thermoplasty three years ago.  They’ve been doing it in Europe for a while and FDA has approved it for use in the US.  The quick explanation is they scope a wire down into your airways using radio frequencies to heat up and burn away extra tissue.  This assists with the extreme swelling and inflammation many of us asthmatics deal with on a regular basis.

Steroid dependency is needing a small dose of prednisone or another steroid on a regular basis.  This is different from using inhaled corticosteroids as an inhaled maintenance medication.  I’ve been on prednisone 80 some days already this summer so continuing would be an easy step.  Dr M would rather not have to resort to that right now at my age, but we’ll see.

Dr M was really intent on option #1.  He talked about some of the different centers in the area and how beneficial it would be.  He welcomes second opinions and would like to consult to make sure he, Dr K and Dr J are all on the same page with treating me.  He was all ready to call up the Cleveland Clinic and get something scheduled when I finally had the chance to inform him I’m heading to Pittsburgh in 10 days to participate in SARP and see Dr W.  Dr M likes that I try to stay on top of things.

So for now we’re going to see how Pittsburgh goes and what they find.  I’d rather not stay on prednisone forever, but it’s better than visiting my friends at the ER every week and much less drastic than the bronchial thermoplasty.