Deciding To Go
This whole past week hasn’t been good with night time PF readings constantly dipping into the 300s. My daily breathing treatment count slowly climbed to 10 by Thursday and I was once again being seriously asked if I needed to go to the hospital. Of course I probably should have, but I really didn’t want to and had a case of the asthma-brain influencing my decisions. I figured I’d go the cheap route and call my doctor yesterday morning to bump up my prednisone taper or something. An email, I love that some doctor offices let you email them, to my primary care physician resulted in a quick reply that my doctor was not in today and suggested I contact my lung doctor. While some might think I was blown off, the response was actually quite reasonable. I still haven’t followed up with my lung doctor since I was hospitalized and they’re the ones that finally got me back on track in July before the drywall dust debacle at work last month. So I left a message at my pulmonologist’s office, you can never actually get a person on the phone it seems, and waited. I waited all day long and then ended up back in the ER.
It’s hard to describe, but unless I encounter a severe, unplanned trigger or circumstance – I can tell when I’m going to have a day bad enough to result in an hospital trip. I kind of had that feeling Thursday and I definitely had that feeling Friday morning. It’s that whole gut reaction thing. I hadn’t slept for several days, but did get a couple hours sleep in mid-morning. The sleep helps, but when you miss a scheduled breathing treatment, I’m not always sure which is worse. Chuck and Liz got home just after 5 and Chuck really wanted me to play with her. That’s about the time when the meds stopped keeping the symptoms at bay. A good friend of ours brought over some amazing chili and corn bread for dinner. We ate, Liz told me to go take more medicine, we hung out and watched some of The IT Crowd. I was back into the cycle of PF at 400 or below, neb, get back up to 500ish and then slowly drop back down. During this time I was noticing my O2 getting to 93, which isn’t bad, but also isn’t good, and when I’d start panting for no good reason I knew I had to keep an eye on things.
Around 11:00PM, PF values were at 350 and below. I went ahead and told Liz and decided to re-evaluate myself at midnight. An hour came and went. I did everything I was supposed to and took all my meds, but my numbers were still the same. It was time for ER trip #5.
I feel bad for Liz. Yeah I have all the breathing problems, yeah I go for days without sleeping, yeah I’m on tons of drugs and am always getting stuck with needles – but I do all this while often getting to forget about normal day-to-day life. Liz still has to go to work and teach, she ends up taking care of Chuck 90% of the time and that’s on top of everything else normal people do and take care of in their daily lives. So while I’m feeling awful and need a ride to the Emergency Room, Liz, who is already tired, knows she’ll be up until at least 4am, will most likely be wrangling our daughter tomorrow AND has work obligations in the morning. I think the Coen Brothers’ Nihilists say it best, “it’s not fair!”
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.