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.
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!”
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.
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.
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.
As a small child I encountered Dr Pepper and immediately fell in love. While others drank their Coke, RC Cola, and flavored pop like Cream Soda, Root Beer, Orange and Grape – Dr Pepper was the drink for me. Eventually I moved to another part of the country where Pepsi was king and came across Mountain Dew.
By the time I was in junior high I had started working at this place with an old school Pepsi machine that dispensed bottles and provided me all the free Mt Dew I needed while at work. In high school my friends and I would consume copious amounts of the stuff and the only reason I can come up with how I stomached all those calories is Mt Dew used to contain far fewer calories than it does today. In fact, many people like to talk about just how bad Mt Dew and other caffeinated, sugar filled, chemical-laden sodas/pop/soft-drinks are. Cause they’re bad for us, right?
I can’t say my innards have every been tickled or that I got a girl to like me because of Mt Dew, but I have done a lot of target shooting with this preferred beverage keeping me “hydrated.”
To be fair I understand all the bad things about drinking pop, soda or whatever you call it. A friend of mine, who happens to be a rare lung disease nurse, says the biggest thing to worry about with Mountain Dew and similar drinks is the phosphoric acid they contain. It can negatively affect your bones, teeth and kidneys, but my friend is most concerned with how it makes muscles gummy or less responsive, which isn’t good for your diaphragm.
So is there anything good about Mountain Dew? Well there’s caffeine and I happen to think it tastes good. Caffeine is known to be a natural bronchodilator. It’s no where near as effective is puffing a rescue inhaler, but it does help. I’ve heard stories of doctors giving asthma patients cups of strong coffee or other highly caffeinated drinks to assist with asthma. Every time my pulmonologist has me do a pulmonary function test I’m asked to abstain from caffeine beforehand. At some point in high school I noticed drinking Mt Dew helped alleviate the side-effects of my asthma medications. Just that alone can be worth it at times, especially when you’re dealing with insomnia. While too much Mt Dew could make me tired while driving at night, I can’t count how many times it’s helped put me to sleep. Sometimes reclining just the slightest makes my oxygen saturation drop making it impossible to become comfortable or sleep.
I think the real concern here, like with many other things, is moderation. I don’t drink Mt Dew every day, nor do I pick up a 2L to drink in the car anymore for a road trip. I have a personal rule to drink twice as much water after a Mt Dew and that’s in conjunction with my other rule to drink at least a gallon of water every day. When all is said and done, I figure pop is better for my health than alcohol or the many other harmful things I could be putting into my body.
A while ago I heard about the Severe Asthma Research Program (SARP) but didn’t really think much about it. Last year wasn’t a good one for me with the non-existent winter creating an extra long mold season followed by the regular tree, grass, ragweed seasons rolling into fall with more mold. I was fairly miserable until late November or early December when the cold temperatures finally killed everything off. For a few months I was high on life doing little tasks around the house, cleaning out a closet, rebuilding a WWII shotgun and actually thinking about things I’d like to do with my free-time instead of just figuring out how I’m going to do the bare minimum. Even though this only lasted a few months, I sure did enjoy it.
Eventually things started flaring up again and I can confidently say I’ve been “sick” since mid May. I keep track of data for my doctors to more clearly quantify how well/bad I feel. Here’s an account of how many breathing treatments I’ve been doing separate from my rescue inhaler or other rescue medications:
January – 28
February – 25
March – 31
April – 14
May – 61
June – 126
July – 107
August – 195 and counting
Earlier in the year several friends of mine in the medical community asked if I’ve ever gone to an asthma center/clinic or have ever gotten a full work up/proper diagnosis. I was kind of surprised this hadn’t already happened. I would say I’ve had moderate asthma for years. It’s something I’ve struggled with for more than two decades and have been prescribed inhaled steroids to one degree or another since 1993. I’ve never really thought of myself as “severe,” but to be fair my condition started deteriorating in 2006 and kind of went logarithmic in 2009. Describing what all occurred and was discovered between 2008 and 2011 is a long story, but one compounding factor was just trying to find doctors interested in listening to my special case and taking me seriously. In that time period I saw two primary care physicians, two allergists, three or four pulmonologists and an ENT doctor, as well as took a trip down to Brigham and Women’s Hospital in Boston to be told I was having a decent day and to stop worrying so much. At times I’ve wondered if things wouldn’t be so bad had I continued to receive quality care during that time, but it’s a topic not really worth hashing and re-hashing.
So fast forward to August 2013 and I think it’s fair to say this is one of the worst months of asthma in my life so far. Last week I spent four days either in the ER or admitted at my local hospital and I don’t even want to think about how much work I’ve been missing. For now I just need to focus on getting better, avoiding triggers and physically limiting myself. About a week ago I was out in the living room watching movies and googling whatever sounded interesting because once again my lung function was low enough I couldn’t sleep. It was that night I came across BreathinStephen.com and noticed this thing called SARP for the second time. I checked out the web site and it really seemed like something for me. Friends of mine in the medical community had queued me into some of the good asthma centers in the country, but I wasn’t really sure how to get in to see someone. For SARP all I had to do was inquire. That morning/night/what-have-you I wrote a post on my blog which eventually led me to a few email exchanges with BreathinStephen, which eventually led to some emails with Dr. Wenzel of the University of Pittsburgh SARP site, and now I’m scheduling my first few visits with the site coordinator.
What is SARP?
The Severe Asthma Research Program is a comprehensive study on asthma in adults and children with seven clinical universities studying different aspects of the disease funded by the National Institutes of Health (NIH). I’m not expecting a cure or a magic bullet, I’m most excited at the prospect of learning more about my condition and contributing to the body of data which could result in helping others. Here’s their description of what they’re trying to accomplish:
The Severe Asthma Research Program was established with the mission to improve the understanding of severe asthma such that better treatment approaches can be developed. SARP is not a clinical trial of new or old drugs. Rather, its purpose is to gather an extraordinary amount of information ranging from responses to simple questions, to lung function, allergy and blood testing, as well as genetic and lung inflammation testing. This information, gathered over a series of 4-6 visits, is databased along with information from thousands of others. The data are analyzed to improve our understanding of this disease and focus the development of new drugs targeted specifically to severe asthma. Your participation in SARP allows your information to be joined with thousands of others to get a much “bigger picture” of the causes and processes of severe asthma.
Over the course of several visits I’ll go through many tests I’ve already experienced and a few about which I’ve only heard. Some of the tests have always been on the list of things to do if I was ever “bad enough.” This is one way for me to get them done without having to bug my doctors about it. A major bonus is all treatment and diagnosis through the study is free. I just have to show up for it.
Up until now I’ve seen separate lung and allergy doctors who both try to treat my asthma, but are never really on the same page. Allergies and asthma are so closely tied together but it’s been odd to have allergists constantly thinking I’m on way too many lung maintenance medications while the lung doctors think I’m on way too many allergy maintenance medications. SARP will be looking at both chronic conditions simultaneously which could gain some new perspective. I’ve already mentioned this to my primary care physician, who thinks it sounds like an amazing opportunity, and will be discussing this with my pulmonologist in a couple weeks. I’m looking forward to sharing my results here and with a new community of severe asthmatics I’ve recently joined.