Tag Archive for lungs

Summer 2014: ER Visit #3

Just as I had predicted the day before, it’s August and I’d probably end up having an ER trip.  I just didn’t think it’d be happening so soon.  Three days in a row I was exposed to some sort of smoke and the third time apparently worked.  A racetrack several miles away was having a special event that night where they were attempting to make as much carbon pollution as possible.  The result of said event made my entire neighborhood, several miles away, smell like burning tires.

I gave it almost a couple hours before deciding to throw in the towel and admit defeat on this one.  On the way, Liz said,

I’m sorry for making you go to the hospital.

She knows how much I don’t like going there, even though I get the help I need, because it tends to set me back a bit with work and other things.  For example, I’ve been awake close to 2 days now.  That’s what happens when I’m injected with solumedrol and my prednisone dose is greatly increased afterward.

We were surprised to see the place so empty on a Saturday night.  I never really have to wait, but that just means they get to me even faster.  Recently a friend of mine blogged about how emergency treatment protocols for asthma seem to have changed.  I’ve noticed some of the changes myself.  As usual I was having trouble talking clearly and being understood so Liz was able to answer a lot of questions for them.  I think this was the 4th time I had seen this particular respiratory tech, and she totally remembered me, so a lot of the initial questions were just confirming medical history and medications.

They checked on me fairly often because I wasn’t able to move a lot of air when I arrived, but the treatment was pretty identical to my other two trips this year.  One duoneb treatment, followed by listening to my lungs and checking O2 sat a while later, followed by 125mg solumedrol, see the doc, and then go from there.  I can always tell how much the doctor has read my chart by how the conversation goes with him or her.  I know this doctor hadn’t read much at all.  She told me I was moving more air, sounded ok, x-rays looked ok, and she was going to “send me home with steroids that’ll make me better in a couple days.”

I’m fairly familiar with prednisone as I’ve been taking it off and on for years.  In fact, I’ve been taking it every day for the past 15 months.  I’m also on every type of maintenance medication they give to asthmatics including xolair.  That and the fact I’m prednisone dependent gets me labeled as a severe asthmatic by many.  When doctors have read all this stuff they usually want to have a 10-15 minute conversation with me or longer.  They want to know how I’ve been recently, what I’ve tried, what works/doesn’t work, what brought on this exacerbation, symptoms, what I think we should do, do I think I should be admitted, have I heard of BT, etc, etc, etc.

So on this trip I got a few nebs, solumedrol, and was sent home after a few hours.  Some of my severe asthmatic friends liken this to a tune-up or oil change for your car.  You know, a quick maintenance sort of thing that needs to be done, and there are probably many other things you’d rather be doing instead.  I really hope I can stay on track with things for a while and not have to go back.  Things are really starting to ramp up right now with school starting soon and I kind of need to be around for stuff.

The funny part for me would have to be when the nurse was going through discharging papers with me and pointed out I was diagnosed with an asthma exacerbation followed by, “you probably know more about it than the paperwork…you probably know more about it than I do.”  Sounds like the nurse read through my chart.

Asthma equals exhaustion

Asthma attacks can be rough.  Chronic asthma can be even worse.

I’ve been officially diagnosed with asthma for about 23 years.  I have a family history of severe asthma and severe allergies.  I’ve been prescribed maintenance medications for the past 22 years and have pretty much taken every single steroid and combination-steroid inhaler at some point in time.  I pretty much take all the types of medications that are offered for asthma and have been taking prednisone solid for the past 15 months.  Just making sure I take my medications on time and log my daily symptoms feel like a part-time job.

I work full-time, I attempt to help take care of our two small children, and I’m working on grad school.  Amongst all that I have trouble sleeping on a regular schedule combined with weekly exacerbations/flare-ups, and every day I hit a wall of tiredness where my body declares, “NO MORE,” whenever it pleases.  It’s hard to make plans because I often have to cancel them.  I also have to be careful where I go so as not to encounter anything that could set me off on the chance I’m having an OK day and have decided to be adventurous.  I can’t go to friend’s houses with cats, I must avoid all types of smoke, I can’t be around mold, places with water damage are usually a bad idea, dusty is usually a bad thing, and during non-winter months there is always something in the air that can make me cough or sneeze and my eyes water…leading to it being harder to breathe.  I also have to be really careful about getting sick because common colds are like bronchitis, bronchitis is like pneumonia and actually getting pneumonia is a Go-To-Jail-Don’t-Pass-Go sort of situation for me.  And by jail I mean the hospital.

Luckily I love watching movies.  That’s a great activity for someone like myself.  I also like to cook things I find delicious, and grow beards.  I just wish sometimes I could wake up in the morning without spending 30 min taking medicine trying to feel not-too-awful to start my day.  I wish I could spend an entire day at work not trying to figure out when I have time to take my meds or need to take my meds.  I wish I could come home after work and actually accomplish some things instead of needing to rest up so I can get out of bed the next day.  I just wish I wasn’t tired all of the time.

Getting my throat checked out

Several years ago my allergist at the time thought some of my breathing issues could reside in my throat.  Unfortunately, like many of my other conditions, at the time I wasn’t experiencing enough symptoms for the proper doctor to follow up on that.  Now several years later things like vocal chord dysfunction have been brought up once again and I figured I need to get that checked out.

My first step was to once again acquire a local ENT.  I had a great one before we moved and then had a terrible experience after we moved.  The doctor was so-so and the staff was a nightmare to deal with so I just quit going.  I had some reservations about returning, but decided I needed to just man up and do it.  Turned out that doctor with whom I was not thrilled no longer worked there and the new one they switched me to was amazingly better.  He was somewhat impressed with my list of medications and conditions and thought it’d be a good idea to go ahead and get a video laryngoscopy and see what that turns up.

Last week I went to the rehab center and met with a speech pathologist.  The easy, non-evasive scope wasn’t able to do the trick due to my over-sized tonsils and uvula, those wonderful things that greatly contribute to the OSA and enlarge when the allergies act up.  Everything was a little red which can be caused from the GERD and all the inhalers I use.  There was also some thickening in my vocal chords most likely caused by the years of coughing and throat clearing.  The good news is there wasn’t any blatant signs of VCD, but there’s probably a little something going on there which is contributing to everything else.

For now I’m following up with the speech pathologist who is going over some stretches and voice exercises with me to make sure I’m speaking with the right part of my throat and not tensing up.  The staying relaxed bit is good for several reasons and most of what she’s having me do are things I’ve done in the past to one degree or another when I used to lift all the time.  It’s been a wild and crazy 8 months.  It’d be great if my five doctors could get this figured out for me.

No albuterol yesterday

This may not sound like a big deal…

I didn’t take any albuterol yesterday.

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

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

Spirometry

If there’s one thing that can turn my day into a horrible, sweaty mess it’d be a breathing test.  After I showed up at my lung doc’s office earlier this week to find their computer system in shambles and my appointment lost, they rescheduled me for today.  I showed up 10 minutes before my appointment to find the computer problem even worse than before.  Cardiology was turning all patients away and forcing them to reschedule, but fortunately pulmonology was seeing any patients who arrived.  My appointments were still in the computer from a couple days ago as I was scheduled for spirometry and then a visit with the NP.

So a couple weeks ago I became extremely congested, which slowly moved from my sinuses to my throat to my chest.  I did a measly five-day z-pack, which I was skeptical about, yet they tell me I only have expiratory wheezes now.  I’ll take that over the constant accordion noises I was making at the beginning of the week.  My visit did start out with spirometry which really isn’t a big deal.  On a good day I just exhale as forcefully as possible into a tube and as long as I have three good attempts that aren’t statistically-significantly-different (did I just make that hyphen up?) from each other, I’m good to go.  Not so much today.  Any resemblance of a forceful exhale was sending me into coughing fits and I sounded like those old people who see my doctor.  You know, the ones with SERIOUS breathing issues who are targeted by all the commercials for my medications.  Even the nurse said, “GOOD GRIEF!  Sounds like we’re breaking some junk up in there!”  Eventually I had three that were similar enough to count and I actually felt much better after breaking up all that junk.  Unfortunately that feeling last maybe an hour before I was back to where I was.  This is why trying to stay active is important and why they’re always worried about people lying in hospital beds getting fluid in their lungs.  There’s still no end in sight yet for my prednisone habit, but I’m hoping my exhales can start sounding less like the 70 yr old thankful Spiriva allows him to eat dinner at the table and more like…well, a normal person.

Bronchitis

Ugh

It’s that time of year again.  The temperatures are dropping and winter is coming.  The plants that produce all those horrible allergens slowly go the way of the buffalo and my biggest fear turns to all the perpetually sick people who tend to surround me everywhere I go.  It’s not like I have one or several people to blame, it’s really society in general, and working at a university doesn’t help me avoid germs.  There’s only so much hand-washing, avoiding door knobs and staying away from crowded areas before I eventually come down with something.  Last week my allergies went berserk on our way to Pittsburgh and I just stayed stuffed up/congested all weekend.  Monday night I felt like I might be getting a cold/virus and then as the week progressed I watched as I started coughing blowing out multi-colored snot/mucous/phlegm and eventually went to an urgent care facility Saturday morning to be diagnosed with acute bronchitis.

I “love” trying to explain things to doctors who aren’t really paying attention.  I realize I was at the urgent care and these aren’t my normal doctors and nurses, but when a guy walks in with obvious breathing issues, hands over a list of 15 medications and tells you “I have severe asthma” you’d think the next question wouldn’t be – “ok…do you use an inhaler for that?”  My long list of medications, clearly separated into maintenance and rescue categories, has several inhalers listed.  The doc didn’t really know what to do with me.  She also wasn’t paying much attention until I said I’ve been to the ER/admitted seven times since June and have been on prednisone since May.  Her eyes got really big and then she wanted to know if I’ve ever been intubated before, etc, etc.  I eventually left with a 250mg z-pack for 5 days and was told, “you’re probably going to be very uncomfortable for a couple weeks.”  I figured it wasn’t worth saying I’ve been very uncomfortable for months.

The weird part is noticing how this is affecting me differently than the other flares I’ve had these past months.  I’m actually breathing much, much better than I was in August, but am still struggling.  I’m just not bad in the sense that I need to be on supplemental oxygen and monitored constantly.  At this point I’m still feeling the need to attempt work due to the ridiculous FMLA situation and I don’t really have any sick/vacation time to use up.  Six months ago this would be a stay-home-no-brainer, but comparing how I am now to how I’ve been in the recent past…this isn’t that bad.  I’ll really have to make a judgement call in the morning, but the good news is I happen to have a three month follow-up with lung doc #1 scheduled for Tuesday so we’ll see how my lungs sound and if I need upgraded to levaquin or something more heavy duty.

Fall 2013: ER Vist #7

I should note this isn’t my 7th visit for this part of the year, but my seventh 2013 visit.  Things were going ok, until I ran into some snags with environmental triggers and needed to up my prednisone dose temporarily.  That was working pretty well until I dropped from 40mg to 20mg.  I was having increased night time symptoms and my oxygen levels haven’t been in the normal range like they usually are.  Last week I passed out a couple times at home.  I’m just glad it didn’t happen while out and about anywhere.  My weekend was a little rough as usual with most of my time just spent in bed or on the couch.  One of those things I’m almost always asked at work on Monday is how my weekend went, what did I do, what did I accomplish?  I usually give some non-committal answer because who wants to know that I only slept about 10hrs total, laid on the couch for 24hrs and watched 32hrs of television?

Monday was a little rough for me at work.  Liz was thinking maybe I should stay home but I needed to teach that afternoon.  I made it through the class ok but was constantly having to stop and breathe as I wasn’t able to get enough air out while talking.  It’s one of those things that can be hard to explain without having experienced it before.  I guess you could imagine trying to have a conversation while jogging/running too quickly.

Monday night was worse and Tuesday morning even more so.  Once again Liz was questioning my need to go to work and asking if I needed to go to the hospital.  That’s always a sign the inevitable is becoming obvious.  That morning I woke up with peakflows around 50% and my oxygen saturation under 90%.  Getting my morning meds and some albuterol in me usually perks me up, but by the time I was at my desk an hour later I was right back where I had started with my O2 bouncing between 87-92%.  I got another neb going and informed Liz what was happening.  I didn’t improve much at all so within an hour Liz had picked me up and gotten me over to my “Cheers,” aka the local hospital, where everyone knows my name on the night shift.  Even though this was early/mid morning, my nurse was someone I’ve seen several times before and the ER doctor on duty was one who had treated me earlier this summer as well.

I really enjoy working with medical professionals who take the time to listen and read.  This doctor knew I had been in there before and instead of doing the standard gamut of tests and imaging scans wanted to know what I thought would help.  We briefly discussed a few things and minutes later they started an IV with 125mg of salumedrol along with some ativan to try and relax things inside my chest.  On room air I was able to get back up to 95-96% for a while and then it started dipping back down to 90-93%, but it was better than when I arrived.  They eventually let me bounce around lunch time and I was able to spend the rest of the day resting at home.

The original taper for the day, plus the IV drugs and the modified prednisone I took later in the day got me up to about 200mg which isn’t exactly for lightweights.  I really hate the side effects of the drug, but it at least offers significant benefits for me.  Today I’m able to somewhat talk and walk around the house a bit.  I’m not constantly panting or looking for something to grab onto or hold.  Yesterday at work I went to fill a water bottle at the sink and had to find a chair to sit down while the bottle filled.  I don’t feel fine by any means, but I’m at least able to be up and moving around a bit.  Hopefully I can go back to work tomorrow and get a day in before I head back out to PA to follow up with my non-local pulmonologist.

More prednisone

Things were starting to get better for me the past few weeks as I saw my daily prednisone intake once again drop to 20mg and then 10mg.  I tried not to think too hard about getting off this love/hate drug as this whole summer I would get off this steroid only to get back on it or need to up my dose when it became too low.  Things almost seemed different this time and I thought I might actually get better before “Fall” hit.  I was wrong.

The weather started turning, mold counts were becoming ridiculously high and then the dreaded combining/harvesting began.  Living in the Midwest means you’re probably close to some form of agriculture, but I’ve always lived in sight, if not immediately next to fields.  When the harvesting begins there is a thick cloud of debris and dust that fills the air almost looking like smoke or dense fog.  All this stuff doesn’t really help anyone breathe, let alone someone like myself with respiratory issues.

I watched my peakflow averages drop 20-30% and my oxygen levels were consistently getting lower.  It wasn’t really until this past week when I passed out from my oxygen becoming too low that I realized I couldn’t keep ignoring this.  Liz really wanted me to go to the hospital, but I somehow convinced her not to take me.  I instead opted to get a hold of my PCP the next morning who got me a Kenalog shot and upped my prednisone taper from 5mg/day to a 40mg taper.  I think I’m experiencing side-effects of Cushing’s syndrome, but it’s nothing I haven’t been able to deal with so far.  The worst for me is lack of sleep and inability to think clearly most of the time.  I’d really love to stay home from work and rest, but I can’t afford not to work and the FMLA stuff is a much bigger pain for me than it’s ever been in the past.  Liz stopped by with Chuck the other day at work and took a picture of us.  I was a little shocked to see how awful I looked and that was me attempting to be cheerful.  As much as I try to hide how bad I feel, it’s obvious I’m not doing great.  I just keep checking my O2 and peakflow numbers when I feel worse because the last thing I need at work is to fall down, pass out or go into a full on attack.  It would really freak some people out.

My local pulmonologist has been saying I could be on a maintenance dose of prednisone for a long time.  I was really hoping that wouldn’t happen, but it’s starting to look more like a reality.  I emailed my new lung doctor to update on what’s been happening and she apologized for suggesting I taper as quickly as I did, which my local doc agreed to.  It’s not like it’s her fault and this occurred over the course of a month, not a week or days.  I’m heading back to Pittsburgh in a few days.  While I’m still on the dreaded drug, it is less than I was last visit.  Hopefully I can get some suggestions on treatment or ideas as to anything else that could be ailing me.

We’re not in Pittsburgh anymore

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

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

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

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

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

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

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

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

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

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

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

Balancing asthma and life

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

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

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

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

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

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