Tag Archive for lungs

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.

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?

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

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.

Candy for big kids

Remember way back in the day when you’d go to the doctor and get a sticker, sucker or what have you?  Well about about us big kids?  What do we get?  Tonight I found out what it takes to earn a Taco Bell Beefy Melt Burrito $5 Box.

  • 10 or so puffs on a rescue inhaler
  • 7 nebulizer treatments
  • 1 Z-pack
  • 85mg prednisone
  • a couple muscle relaxers
  • anti-anxiety medicine
  • codeine cough syrup
  • a 4hr coughing fit
  • continually turning purple
  • and my 3rd trip to the ER this year

Is it worth it?