My breathing problems affect my life on a daily basis. Every morning when I wake up I take a handful of pills and puffs off inhalers. I track peakflow numbers and sometimes take note of my oxygen saturation. I must pay attention to my body and symptoms in an attempt to catch any flare up, attack or exacerbation before it gets bad. I have to avoid smoke. I can’t hang out around cats. I have to stay out of musty/moldy buildings. I have to limit my activity in extreme temperatures. I must pay attention to the weather. I must manage my stress levels. I can’t let myself become too worn out or tired.
If I fail to stay on track with these things and others things can quickly go downhill for me. I may not notice right away, but the longer I wait the worse it gets. My rate of inhalation increases. I may breathe shallowly. I don’t always breathe with my abdomen well. I over-utilize my auxiliary muscles to breathe. I act irritated about everything. I become sluggish and less responsive. I slouch. I become still. I quit talking and start using other means of communication. Oh yeah, and I can become irritable like a 3 year old who desperately needs a nap.
I’ve snapped at my wife, yelled at my daughter, blown people off, acted rude and have probably looked like an idiot at times. I don’t like being this way and don’t try to act this way. It’s just what happens sometimes when I can’t keep a lid on it anymore. That stabbing pain every time I inhale or the constant struggle just to appear like I’m breathing normally without gasping for air in the middle of a meeting. It can be rough sometimes. I haven’t had a day where I’ve felt great since 2005 or so. Invisible diseases are tough.
Did you know 9 people die of asthma every day in the U.S.? Here are a bunch of asthma stats from AAAAI. I came across this link while catching the latest at My Life as an Asthma Mom.
A lot of things have been happening this past month
- I had several asthma attacks due to over exerting myself in the snow outside in sub-zero temperatures
- My prednisone in-take is finally back down to 5mg again
- I’m finally starting to lose some water weight from the lower prednisone dose
- I’m not feeling great, but also not feeling awful every day
- We have a new kid in the house
- Philip Seymour Hoffman died
- I heard I might get off the prednisone in 6 to 12 months
- Jimmy Fallon finally kicked Leno out
While I’ve always had at least moderate asthma, there were always a few things that separated me from those with serious asthma problems. Prednisone was something I had to take every so often, but never longer than a week, two at the most. Last year I did a taper or two and then have basically been on it since late May. While it drives me nuts and has some unpleasant side effects, I strongly believe it’s keeping helping me breathe better and I’d rather take these pills every day than end up in the ER on a regular basis like I was doing just a few months ago. I know some people who have been on prednisone for years and can’t really relate to that. There’s a good chance I’ll be on these steroids for a while, but at lest there’s a chance I can stop taking them before 2015.
Exercise and activity levels:
You never quite understand exactly what you have until you don’t have it anymore. I’ve heard this statement so many times, but it’s never rang truer this past year.
- I used to park half a mile away from my building at work and do the one mile round trip 1-3x a day.
- I never had to consider just how far away something was on campus before deciding to walk, catch the shuttle, drive or not go.
- I have to carry a man-purse with all my medical necessities everywhere I go.
- At some point in time, every day, I feel kind of awful.
- I try to make plans but often have to cancel them.
I’m trying to walk around as much as possible and not worry too much about doing anything heavy duty. I think Liz enjoys yelling at me whenever I try to do anything outside. Last week my local lung doc told me to stop breathing the cold air, so I guess I should probably listen. Fortunately Spring is on its way so as long as allergies don’t kill me, I’ll be able to start walking outside more as well.
Yes, we have a new baby in the house. I recently listed off a list of possible nicknames for the little dude, but Liz is calling him Neville on the internets so it seems I should too. Chuck has been great. She’s very helpful in an appropriate way without bugging or pestering the little guy. He’s pretty chill and Dude-like, which we appreciate. He’s also not up every hour all night long so we have been getting some sleep. While there is a certain amount of stress with taking care of a new baby, the worst is getting busy and forgetting to take my medicine, which doesn’t help at the end of the day when I sometimes crash out of nowhere.
It’s hard to stay mad at him too long for forgetting to take my meds. The kid already loves beards. THE KID LOVES BEARDS. He also likes taking it easy and folding his arms like he’s in a 90s boy band.
It was a real shock for me to learn Philip Seymour Hoffman died. The New York Times posted the story and I learned about it a mere three minutes later. He was truly one of the few great actors of his generation. We’ve tried to come up with other actors who are at the same level he was…it was hard to come up with a list of names. I haven’t been affected this strongly from a celebrity dying since Heath Ledger died, only Hoffman passing is a much bigger deal. It’s weird to think Jackie Treehorn and Brandt are no longer with us. I can’t even imagine what kind of roles and performances could have come out of Hoffman in the next 20+ years.
This week I had to call up my lung doc to get the prednisone refilled. When I picked it up the next day at the pharmacy I noticed it has 11 refills between now and Jan 2015. This either means I’m on the stuff for a lot longer than I want or he’s just tired of the refills. I’m pretty sure I’m just going to be on it for a while and even though I heartily dislike popping these particular pills every day, it’s a better alternative than trips to the hospital every few weeks.
Last year I was told I basically had three options:
- Become steroid dependent
- Look into bronchial thermoplasty
- Go visit an asthma center and get a full pulmonary diagnosis
Since then I’ve started SARP and have been on prednisone for months. The good news is I’m at work most of the time and can walk around without feeling horrifically awful. I still have the occasional setback, but I haven’t been to an ER/ED for almost three months. I don’t spend all my time in bed or lying down like I used to. I’ve been able to socialize a bit, cook food I want to eat and do random things here and there. While I don’t see myself being magically better any time soon, I am seeing very slow and gradual progress towards being not so chronically ill. I’m really hoping to make some strides this winter and stay away from flu/pneumonia in order to not be knocked off my feet when allergy season starts up again.
…is probably the most stupid thing I’ve done so far this year. Many of you experienced the snowpocalypse that encompassed a major portion of the country last week. We had -20F to -40F windchills and on the slightly warmer day I felt compelled to do a little shoveling since our country driveway was knee-deep and pregnant Liz isn’t supposed to be exerting herself. We finally found someone who could come out and plow a path who also knew how to not scrape all the gravel off into the grass. While this was occurring I, for some reason, felt the need to clear some fallen branches, direct the plow dude where to go and clear off the sidewalk.
Like most stupid decisions, it didn’t seem too bad until I was about 15 minutes into it and then decided I needed to be done. The next two days were spent wheezing, coughing, and Liz reminding me what a stupid decision that was. Fortunately I’m on the mend now. I’m tapering down on the never-ending prednisone and we’re eagerly awaiting kid #2 who’s due any day now.
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.
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.
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.
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.
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.