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This girl has not yet gone to medical school, and she fully appreciates that her doctors have.
But sometimes, sitting at the patient end of things, I notice a couple of subtle things that my doctors could maybe do a little bit better. I’ve seen a LOT of doctors in my career as an asthmatic -walk-in docs, emergency room docs, family doctors, pulmonologists and anesthesiologists -and most of the time I worship the ground they walk on because they help me breathe and treat me well. Still, here is a list of things I occasionally notice:
1. For Pete’s sake, please introduce yourself to me when you walk in the room. First off, it would be nice of you to let me know that you’re the doctor taking care of me. Also, you get to know *every last detail* about me, can I at least know your name??
2. Please do not talk to me as if I am a baby. I know that you see a ton of patients over the course of a day, all of them having varying degrees of comprehension of their state of health, and you’ve got to find a “one-size-fits-all” patient jargon. But when I come to you as a 20-year-old who gives you a clear and concise description of her symptoms and who shows you that she is informed about asthma and asthma treatments, I would really appreciate it if you would tell it to me as it is. More specifically, if you could use the real name of medications/class of medications and tell me what you plan on giving me and WHY, that would be awesome. It really helps when your doctor shows that they view you as an integral part in attaining optimal health.
3. Please, please, please, do not tell me that since I’m not wheezing that everything is OK, or that maybe it’s not asthma. First of all, it is now well established that not all asthmatics wheeze, that wheezing is not present in every exacerbation, and that absence of wheezing after wheezing was originally heard can be a sign of a worsening attack. My pulmo told me so himself. That aside, when you say this, and I know that I am using my accessory muscles to breathe and speaking in 3 word sentences, it makes me feel like you are not paying attention WHATSOEVER to how my asthma is presenting, and it scares me. It also makes me feel like you think I came in for nothing.
I think that’s it. If every doctor did all these things, I’d be the happiest patient ever. That being said, most doctors do 
and I’m grateful for it.
Admittedly, after my exercise extravaganza yesterday, the lungs were rough last night. It was worse than most nights and I didn’t get much sleep. Nighttime asthma symptoms are so much worse because a) they happen when you’re alone in the dark, usually disoriented from your half-sleep and b) you get so aggravated because you think you’ll never ever fall asleep.
I feel much better now that it’s morning but I know I’m tired because I boiled water for my tea this morning and then poured it over my cereal. Duuhhhhh.
Do I think it was a mistake though, to do a cardio workout yesterday? No, I’ll probably do it again next Wednesday. The endorphin high and the good I know I’m doing for my cardio-respiratory system were worth it.
Thursdays are my favourite day because I have genomics (my favourite class) and accordion lesson and highland dance! So yeah I may be dead on my feet but at least I have an enjoyable day ahead of me.
And did I mention my muscles hurt? Oooooww 
Well I asked y’all for some blog food (Kerri’s way of saying please give me something to blog about!). She suggested I write specifically on living away from home with asthma. Well it’s something I write about most days in one way or another. I’ve also written a guest post about it at The Asthma Mom, which you can read here. Still, I’ll share some thoughts about it, as I guess I’m becoming the unofficial expert on the subject! Haha just kidding, sort of.
From day to day, I don’t find it too challenging. I’ve outgrown reminders to take my daily meds anyway. There are a few added responsibilities like picking up my prescriptions and getting my own butt to the doctor’s office. All these little things are like brushing my teeth to me, in other words I don’t think twice about them.
There are times when it’s really, really tough. The hardest part of being so far from home is when I feel like I’m approaching That Critical Point. If you’re an asthmatic, you’ll be all too familiar with what I’m referring to: it’s the point when you’ve been severely short of breath for several hours and all of a sudden your chest gets even tighter. A sense of impending doom washes over you and you think you need a little help breathing, but you are just dreading the inevitable cafuffle caused by going to the ER. I always have good intentions, I try to be a star asthmatic, but my reasoning always seems to go out the window in my desperation to have this quietly go away. It’s when I’m reaching this point that I want my mother and I want her now.
It is an unspoken rule between my mom and I that I call her, if I am able, when I get to this point. I tell her I have been feeling very bad for x number of hours and she asks what I think I need to do, do I need the hospital? (I never specifically call her about my breathing unless I’m really feeling nervous about it). I usually waffle around about it, saying maybe, I don’t know, maybe I should, I don’t want to, I don’t know. More often than not, she’ll calmly tell me that it’s OK to go in and that I should just go. The motherly shove is all I need. Or, conversely, sometimes we’ll agree that I’ll try prednisone or see my family doctor first. As you can see, I may be a semi-independent, reasonably intelligent young adult, but I still need my mother to be my brain when I am having an asthma attack. I wish more than anything that I could have her next to me every time I’m feeling like this, but we make do over the phone.
The other side of this is that I know my mom worries about me alot, which is entirely reasonable I’ll admit. It can’t be easy at all to know your child is thousands of miles away, having trouble BREATHING, and may or may not be fully emplying her logic capacities. Amy, do you wish to chime in here? I know she doesn’t like getting those phone calls, but I can tell she really appreciates that I call her to check in before I go to the ER. I think she likes to be able help me brainstorm about what to do.
The second-hardest part of living away from home is the flip side of what I mentioned above: recovering from severe exacerbations. If you don’t have asthma, you probably don’t know that it can take weeks to return to your normal state (whatever the heck that is). Following a severe episode, especially if it has involved a hospital, I have very little energy and even little tasks continue to make me short of breath. At home, my family (I know I’m always talking about my mom but my dad and brother and sister also exist and are wonderful!) are really conscious of this, they don’t expect too much and help me out with the little things, like um, making me breakfast or carrying my bag or what have you. When I’m away in this situation and trying to get back into the swing of things and keep up with the rest of the world, it’s very tough. I just feel so tired helpless and I yearn for the help and understanding my family provides. This type of exhaustion would definitely be enough to make me cry.
I’ve read and re-read this post a couple of times now, and it kind of strikes me how unprepared I sound in it. Am I actually doing this right now?? I don’t sound ready to be taking care of myself whatsoever! Yet, here I am, thousands of miles away from my family just kind of rolling with the asthma attacks as they come (I wish they didn’t). I deal with each one differently, some more responsibly than others. In one week I turn 20 years old, am I taking care of myself like a 20-year-old should? Have I missed some sort of boat on the matter?
I am pretty diligent in checking the weather site seeing as my lungs are so finicky. Not that it helps, because the site changes its mind pretty much every hour. EC didn’t decide on rain for today until this morning, but my lungs knew it was coming before I sat down to my computer.
I just polished off a mighty flare. I’m medicated and feel good to go but I promise I’ll do something about it if it comes back tonight.
I just don’t understand why I can’t even handle a bit of rain anymore, this is getting ridiculous!
On a more humourous note, has anybody ever seen “Mean Girls”? I’m totally like Karen in this movie, except I forecast rain by what is IN my ribcage!!
I’ve heard people with chronic health issues say things like “I hate my disease, but given the chance, I don’t know if I’d get rid of it”. So, OK, I get where you’re coming from. I know that hardships help you grow, and make you appreciate life so much more. And I know that living with something like that for a long time can start to define you and become a part of your personality. Yes, yes and yes.
My take on the hypothetical “if you could take it all away…” situation is that my asthma is not the end of the world and I certainly can cope but if my fairy godmother came along, I would say YES! I’m thinking of all the possibilities here. I could get a good night’s sleep every night, I could wake up and feel like an actual human being in the mornings, I could dance and run without having an excuse not to, I wouldn’t have to take (and pay for) so many meds, I could go anywhere without having to run the list of potential triggers through my head. And most of all, there would be none of this life-threatening asthma episode stuff, no more scaring myself and everyone around me. Doesn’t all that seem like a good enough reason?
Of course, I can also appreciate the parts of having asthma that have been good for me. Number 1 is that if I hadn’t known what it’s like, I would never have learned to appreciate being able to run like the wind. Now, when I’m healthy, I’m extra-happy, and my smile shows it. I try to remember everything else about my health that is good, like having full mobility, no muscle or joint pain, no stomach issues, no headaches or neuro problems. Hey, I’m a healthy girl.
The other thing that’s been good, and which I really do appreciate is that I have a pretty good angle on what it’s like to be a patient and that will help me very much in my career. I’ve met a lot of doctors and I know which ones are able to communicate effectively and compassionately and I’m starting to model myself after these people.
So yes, every cloud has a silver lining! But I could still really do without the asthma attacks.
My 2 cents for the day, a little peek into my crazy brain. I’m away for the weekend, have a good one!
But they are gone now! Did I ever mention that I had a tonsillectomy when I was 16 years old? I don’t really have anything to write about today so i thought I would tell you the story of the year i had my tonsils out.
OK, well first let me tell you that the year i was 16 (grade 11) was the year my asthma started to get a lot worse. The initial incident involved me going to camp and getting a little too close to some horses. I had an asthma attack on a hike that left me breathless for weeks after. Another story for another time. That year I also a pneumonia in December that had me in the hospital.
Anyway, my tonsils. They were huge. Massive! And I had something called chronic cryptic tonsillitis, which meant my tonsils were full of little holes. Bacteria and other nasties got caught in there and then my whole throat would get infected. I was sick nearly every other week and I was chronically tired. This combined with my breathing issues meant that I was a pretty worn out girl. I was doing well in school, even though I missed a lot, but I didn’t have energy for much else.
I finally got in to see an ENT and he took one look in my throat and said he would take them out. I saw him for maybe one minute but I was just happy to know that I was going to have a way to feel better. The surgeon was pretty gruff and my mom didn’t have the best feeling about him but I wasn’t too fussed about it.
My surgery took place over spring break (what a rip off!). I got to the hospital early in the morning. I met the anesthesiologist in pre-op and he had me have a neb just for preventative measures. He was nice and on the ball and I felt pretty good about him. My last memory before conking out is of him getting an IV in the crook of my elbow and counting to three. Fast forward to approximately one hour later: I’m somewhere between dreamland and the land of the living.
I can hear a female voice calling my name, but I’m in no hurry to answer. My body feels very very heavy. I can also feel some sort of urgency inside my chest cavity, like something is very wrong, but at the same time my conscious brain is saying “meh”. I can hear that I’m absolutely gasping and sucking air, but somehow it doesn’t register with me that it is me making those noises and that this is bad. The voice that has been calling my name all that time (how much time? 30 seconds? 10 minutes?) suddenly gets harsher and barks “Danielle!”. I lazily decide that this is reason enough to wake up and my brain switches on. It’s at this very moment that I realize what is going on. I’m not breathing. I can feel it throughout my body. My head kills and that cold wave of shock races to my fingertips and toes. 2 nurses and a doctor are with me and I’m being wheeled somewhere. There’s a mask on my face, I realize. Now I start to consciously work to breathe, arcing my body on the bed. It feels terrible, and I have no idea where I am or where I’m going or how much time has passed.
I’m wheeled into surgical ICU. WTF? The nurse is on the wall phone to the day surgery unit, bla bla status asthmaticus. WOah lady! The anesthesiologist is still with me and is the one telling me what the heck is happening. He says that I stopped breathing (or failed to start breathing on my own) when they extubated me and that my asthma is currently out of control (ok, duh). I’m on continuous nebs, apparently. Oy. I’m incredibly clamped up and it’s not getting in, and I’m stuck on CPAP. HELL. My body begins to relax and I conk out again. I dunno what happened here but I woke up later.
My mama came to see me a few minutes later, and I was off ventilation and onto the paeds ward by (late) bedtime. So much for DAY SURGERY! Note: this was not the children’s hospital that I had come to know and sort-of love. At this point, I was not liking the adult hospital.
The surgeon came around in the morning and said he had never seen anything like that and that he never has problems with asthma patients. Um, sorry? I didn’t mean to? That was the last time I saw him. A nice paediatrician took over, but he didn’t let me go home that day. Or the next for that matter. My lungs were so noisy that I was sent for Xrays. No pneumonia thankfully, just post-surgical gurgle-wheezes.
Gah! All this for a tonsillectomy? Was it really worth it? On day 4 I got to go home. In the hospital, I was so sick from the asthma attack and also probably very drugged and I forgot all about my tonsils, I didn’t feel any pain while I was there. The nurses kept giving me these delicious honeydew popsicles thinking my throat must be agony. When I got home though, man was I in pain. On day 7, I finally went to see my doctor just to check in, who discovered I had massive abscesses where my tonsils used to be. Somewhere in the mix I acquired a yucky infection. Kaibosh the amoxicillin and bring out the clavulin. Unfortunately, clavulin makes me break out into a burning rash.
Again, WTF? I think that everything that could have gone wrong with this surgery did go wrong. Well, I suppose that the surgeon could have dropped a scalpel down my throat, or cut out my tongue by accident.
2 weeks later I went back to school and my energy started to come back although I couldn’t shake the feeling that I had a brick strapped to my chest. It literally took me until summer to start breathing easier.
All this can be summarized by what my MedicAlert bracelet now says:
Asthma
Caution with General Anesthetics
Allergic: Clavulin
(I personally think that “caution” is a bit of a gentle term. I would personally put “avoid at all costs!”) I hope my appendix never craps out on me or I’m screwed.
I am feeling much better this morning. I felt the attack break at around 10 last night and managed to get a bit of sleep so all’s good. Being able to walk around my house without being too breathless sure makes a difference. Thanks pred! I’m having some wicked prednisone tummy and I’m a bit sore and in a few days I will probably wonder if the side effects were worth it this time, but right now I’m just thankful to be feeling better.
Hello, it’s me again. Can’t do much but sit with my laptop today. At about noon when I was struggling just putting my load of laundry into the washing machine and I refused to eat lunch because I was so breathless, I decided it was time to bring in the big guns, since ventolin is lasting me approximately 20 minutes. My mom zipped down to the pharmacy to pick me up a course of prednisone (I usually have a few repeat prescriptions at my disposal). So, booo prednisone. But yay to the fact that I didn’t wait to get to a critical point.
My mom made a *hilarious* joke as she handed me the meds. She said “you and your accordion were made for each other, you both have squeaky bellows”. Ha. ha. HA, Mom. Actually I did laugh a bit, but just to humour her.
(Yes, yes I play the accordion. Commence making fun….)
I am giving it until tomorrow morning for the steroids to kick in. And if they don’t well… you know.
I should probably sign off before I tell you more quasi-embarassing things about myself. TTFN.
4 PM : Grumpy, mopey
6 PM : Watery eyes
7 PM : Itchy throat, dry cough
1:30 AM : flaaaare!
I recognized it early on and took appropriate measures before bed. I would like to think it lessened the blow. Even though almost every surface outside is covered in ice crystals this morning, my mom decided to put all her potting plants that had been on the floor of the family room outside. We suspect they were the culprit. Poor plants!
