Tag Archive for lungs

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.

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.

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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.

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.

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.

The Dangers of Outside

I once had an Eastern European pulmonologist who spoke with an awesome accent and reminded me of Olek Krupa in The Italian Job (2003).  He was a very nice and caring doctor, but I had this feeling I should never cross him.  Back in 2007 I was in his office for the who-knows-time after another exacerbation.  This time I had come home to the smell of smoke outside, the local school still burns their trash, had an asthma attack and barely made it into the house.

Have you ever thought about getting one of those bubbles to live in?  You know, like that Bubble Boy movie?

Of course he was joking, but my doctor had a point.  Between my seasonal allergies and hyper-reactive airways, it sometimes wasn’t and still isn’t worth going outside certain days.  While living in a “bubble” or working in a “clean room” environment would probably be key for me and many others, it isn’t plausible, feasible or realistic.  The important things to focus on are identifying what to avoid and when to stay inside.

Allergies come in both the indoor and outdoor varieties.  Sometimes it’s easy to know what will cause you an allergic reaction, but it never hurts to see an allergist and be tested if this is a significant problem for you.  I’m allergic to most local trees, grasses, ragweed, dust, dust mites, most molds/fungi and cats.  Realistically I can encounter any of these inside or outside depending on the situation.  I’ve had to identify homes of friends and family I cannot visit, stores and buildings I cannot enter – there’s even a movie theater in town I don’t frequent because there’s either dust, water damage or mold in there.  We keep our doors and windows shut during most of the year, run our air conditioning and have a True HEPA filter that helps to keep the air clean.  Be sure to keep your furnace filter changed and stay on top of all your duct filters as well.  Cleaning can be a chicken-and-egg situation if dust is an issue.  Obviously stirring up dust by cleaning will aggravate your condition, but waiting too long to do it, or avoiding it completely, will just add to the amount of dust in your home making you sick.

Irritants are different than allergies, but can still make you feel just as bad when encountering them  Examples can include:

  • Smoke – wood, trash, tobacco, etc.  These all contain various particulates, chemicals and other “stuff” that can irritate and inflame your upper/lower respiratory system.
  • Smog and air pollution – while this problem is often confined to heavily populated areas, it can travel or become worse when combined with weather.
  • Strong odors – perfumes and colognes, cleaning chemicals/supplies, cooking smells, sewage, body odor, insect sprays, industrial glue, paint, etc
  • Particulates – tiny particles in the air such as chemicals sprayed on crops, dusts and powders, soot, etc.  These tiny particles of matter can be either solid or liquid and exist in the atmosphere.
  • Weather – I’m including weather separately below, but wanted to point out thunderstorms can often bring unwanted guests in the form of allergens, pollutants, particulates and anything else that was stirred up on its path from Point A to you.

Weather changes and patterns show up in the form of cold winter air, hot summer air, humidity, pressure changes, etc.  I have friends whose worst time is Winter with the cold air, but I can have just as much trouble with the heat and humidity in the summer.  The important thing to know what affects you and how prepare.

Cold and flu season can be hard to avoid in public places and work when simple cold and viruses seem like no big deal to people.  A pesky cold for an average Joe is like bronchitis for us, and bronchitis for them can be like pneumonia for us.  I’ve never found a great way to breach this with co-workers, but it’s about the same as just being out in public.  Try not to constantly touch your face, wash your hands, and avoid the coughing/sneezing zones if possible.

agoraphobia-2012

So last night I was feeling “ok” and almost forgetting I had been in the hospital just two days prior.  The idea was brought up to go get some ice cream at a local place in town and that seemed like a great idea.  It was neither hot nor humid outside, pollen and mold counts weren’t too bad, and I had been staying on top of my breathing treatments.  So we drove the 5 miles, got our ice cream and took some seats on the picnic tables farthest from the ice cream hut.  This is mainly to avoid anyone who may start smoking in line or in their cars immediately next to the building with their windows open.

Not too long later I caught a couple whiffs of smoke but it was pretty infrequent.  I’m guessing we were 40 yards away or so from the building, but there was a light breeze bringing anything from that direction our way.  Liz wanted to know if I should leave, but it wasn’t constant and I decided to stay.  Right about the time we were ready to leave, there was more smoke and Liz decided we needed to get out of there.  It’s a good thing she’s around to notice this kind of stuff because by the time I got into the car I was already losing my voice and hurting to breathe.  Two albuterol nebs later I was back up to about 430 on the PF and hovering at 92% O2 saturation.  I spent the next 7 hours doing treatments before I could finally fall asleep and have been completely exhausted all day.  This is what it’s like to be a severe asthmatic.  All I wanted was some ice cream and the people smoking weren’t even smoking in a non-smoking area or anywhere near me.  It’s just what we have to deal with on a regular basis.

Scheduling your medicine

Is timing your medication important?

Whether you take just one daily medication, several maintenance medications or only rescue medications – timing can be key.

Every morning I pop three pills, use a maintenance combo inhaler, and a nasal spray.  Many days I also use my rescue inhaler or take a breathing treatment to open my airways for my inhaled corticosteroids to be more effective, and most of the summer I’ve also been taking anti-biotics and/or oral prednisone.  In the evening I take another pill, use a long-acting bronchodilator and another dose of my inhaled combo inhaler.  Over the course of taking maintenance medications for 20 years or so I have not always been great about sticking to a strict schedule, but I’m working to improve that.

Taking medicine both “when I wake up” and “before I go to bed” are a great idea but in reality I don’t wake up or go to bed at the same time every day.  Some days I’m up at 6am and others I may not get up until 10am.  Night time is the same with me going to bed anywhere from 10pm to 3am or later.  While this may not seem like a big deal, most of my medications are on a 12hr or 24hr schedule and I already suffer from nocturnal asthma symptoms so making sure my symptoms are  appropriately covered by my medication is key.

Scenario 1:

I wake up at 6:30am and take my medication at 6:45am.  I get ready for work, head out and arrive back home around 5:45pm.  I help to prepare dinner, play with Chuck, we go through her bedtime routines, I watch some TV and get ready for bed around 11:30pm.  I take my medication at midnight and repeat basically the same schedule the next day.

You probably noticed I should have taken my evening doses of medication around 6:30pm-7:00pm, but instead waiting until midnight which was 6 hours too late.  Additionally, I’m taking another dose of medicine six to seven hours later effectively skewing the appropriate levels of medicine that should be in my body at any given time.  Fortunately I’m not dealing with dangerous levels of drugs here, but this could cause issues depending on what you’re taking.

Scenario 2:

This summer with all my extra exacerbations I’ve been attempting to stay on a better schedule for my medication.  I’ve typically been taking my meds between 6am and 9am and depending on when I took my morning doses, I match that same time at night.  While this hasn’t magically “cured” me, I have noticed a reduction in my nighttime symptoms.

Another change I’ve made is when I’m taking breathing treatments.  Usually these are as needed or “PRN” is a term/abbreviation you’ve probably seen written down.  Because I’m taking more than six every day I’ve been scheduling these treatments every four hours and supplementing in between with extras when necessary.  Many chronic asthmatics try to be heroes or gallant, waiting too long to really do anything timely for a variety of reasons.  I can’t afford to be the hero anymore, I just need to take my medicine to prevent an upcoming attack, even if I feel fine, as well as respond to symptoms early and not waiting.

How do we stay on task?

Basically you need to find something that works for you.  Setting an alarm on your watch or cell phone is something easy to try.  Some may find scheduling medications around their schedule easier to handle, or getting someone to remind them.  One thing I do is carry all my medication with me so no matter what happens I can always take it no matter where I am.  If I have to take my second dose of Dulera at 7pm, I need to have it with me no matter if I plan on being home then or not.  It’s not worth it to wait too long and then spend the next few days recovering due to unforeseen circumstances.

If you’re not sure when you should be taking your meds, or how often, this is a great question to ask your doctor at next visit, or contact their office in the near future to ask the nurse on duty.  It’s also a good idea to double check you are taking your medication properly as well as on time.  Do you use a spacer with your inhalers?  Is it necessary to use a spacer?  Are you rinsing your mouth with water after steroid inhalers?  Are you using your nasal spray properly?  If you’re compliant with your treatment but not doing it properly, this can be just as bad as not doing it at all.

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.

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