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.
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.
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.
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.
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.
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.
Go to an asthma clinic and get a full work-up.
Look into bronchial thermoplasty
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.
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.
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.
It’s easy to believe a lot of what you see on TV and in the movie theater until you come across something with which you have personal experience and say, “what the….” I first remember one of these instances sitting in the living room watching who knows what when a woman on TV was giving birth and my mother thought it was ridiculous. There was probably a lot of unnecessary sweat, screaming and flailing going on there. I just remember my mom thinking it was over-dramatized. I think the same can be said for asthma. At least 25 million Americans are diagnosed with asthma (“Asthma at a Glance,” National Center for Environmental Health, U.S. CDC, 1999) and COPD is currently the 4th leading cause of death in the US (Mannino and Kin, 2006). You’d think people would be more informed about lung disease and what it looks like. This also makes me wonder who is consulting with these writers, directors and producers as to exactly how actors should act in these scenes. To be fair, some portrayals are supposed to be over the top and exaggerated, but how is the average, free-breathing, entertainment-connoisseur supposed to know that?
Portrayals I find inaccurate, annoying, and what have you:
I have often seen asthma exaggerated, blown out of proportion, and not treated seriously in films and on TV. Children with asthma are often picked on, made fun of, ridiculed and seen as less than normal. They can’t go outside, participate in gym class, breathe normally, talk normally or do what they want in life. Their disease, condition, symptoms or even medication are used at plot points or MacGuffins, instead of just being a part of who they are. Even in the show Lost, the character Shannon has pretty convincing asthma, but it’s really just a ploy to find her medicine than anything else.
Mikey in The Goonies (1985) – way too many puffs on an OTC inhaler and later tosses it when he no longer wants it. Apparently I’m not the only one who recognizes this:
Uncle Junior in The Sopranos (1999) – OSA and his CPAP, can no one help him get his mask on properly?
Bobby Elvis in Sons of Anarchy (2008) – constantly trying to buy those “crazy expensive” albuterol inhalers, not to mention your average rescue inhaler has roughly 200 puffs in it.
Bobby – That dealer, she got that albuterol?
Piney – Probably.
Bobby – Tiki’s going through three inhalers a week…
Stevie on Malcolm in the Middle (2000) – overplayed wheezing and shortness of breath. Sorry about the poor quality of videos here. The first is a scene from an episode and the second is the actor, Craig Traylor, leaving a phone message as “Stevie.”
Morgan in Signs (2002) – suffers from an asthma attack without medicine while his father tries to help him through it.
Thomas in Black Hawk Down (2001) – soldier uses his inhaler before heading out on a mission, and yes I know there are questions to be asked about his active duty status.
Bob from Up in the Air (2009) – man loses his job and wants to know how he’ll care for his daughter without insurance. I really dig J.K. Simmons’ righteous anger here.
Barry in Sidekicks (1992) – teen with severe asthma manages his symptoms through a regulated exercise program.
So what’s wrong with asthma in pop culture?
I’m fairly certain there is no lack of education and information available about asthma. The problem is people seeking it out or stumbling across it. Unfortunately the main way people learn about things that aren’t in their face is through TV and film where asthmatics are generally depicted as:
Why asthma? Why did you select any life-threatening condition or the character, Carl Wheezer? Is asthma funnier than heart disease, diabetes, epilepsy, or AIDS?
There is nothing funny about growing up with asthma, a condition that robs children of oxygen, limits physical activity, and requires responsible use of inhaled medications and avoidance of allergens and irritants.
Was the character intended to educate children and the public about asthma?
If so, your efforts backfired.
Jimmy Neutron perpetuates the painful myth that children with asthma are emotional wimps that tend to overuse inhaled medications when faced with excitement.
It may not seem like a big deal, but these cartoons are both educating children on their limits and expected lifestyle AS WELL AS educating non-asthmatics on the appropriate response and treatment of those suffering with the disease. This includes other children, parents, teachers, family members and anyone else an asthmatic might deal with on a daily basis or run into only once. If this still doesn’t seem like a big deal, I’d like to point out several articles where two children and an adult find themselves in need of emergency care.
Personally I think we need to encourage children to make goals and support them in achieving those goals. I was told as a child I could do whatever I wanted and played football even though I suffer from severe asthma and severe summer/fall allergies. Instead of creating ridiculous, debilitating characters why not celebrate our fellow asthmatics who have proved they accomplish their goals. Asthma obviously didn’t keep Martin Scorsese from winning 111 film awards including an Oscar for Best Director on Hugo (2011). Here’s a short list of a few other famous people you might recognize.
John F Kennedy
Louis “Studs” Terkel
Ludwig von Beethoven
Peter the Great
Rev Jesse Jackson
William Tecumseh Sherman
So what can we do? I’ve decided to start blogging more to share my story and experiences. In just the past few weeks I’ve already been contacted by friends, family and strangers saying they’ve benefited from or learned something from things I’ve shared. I’m committed to be on the lookout for fellow asthmatics in need of assistance out in the world and taking action when necessary. I’m also looking to point out and share good examples of asthma in pop culture that will further asthma education around the world. In fact, there’s some buzz about a new movie, Asthma (????), directed by Jake Hoffman and starring Krysten Ritter from Breaking Bad.
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.
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.
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.
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.
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.