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I’ve been bouncing around the respiratory clinic for the past week, conferring with my pulmonologist and getting full PFTs and simple bloods done. I also checked in with my gp this week. And the concensus is: it would be best for my asthma control if I had full control of my prednisone usage. In other words, I get a nice fat supply of steroids and decide when I need them.
Woah. This is different. In the past, I have had one course on hand to use in a pinch, like if I was travelling or something. The conditions are that I have to see my pulmo regularly (which I already do) and tell him exactly how I’m adjusting my treatment. The plan here is to sidestep the germy walk-in clinic and hopefully avoid emerg altogether. In case you didn’t know: I’m NOT on prednisone longterm, but I have an exacerbation every 1-2 months that requires treatment with oral steroids. For the past couple years I have averaged 9-10 courses a year. When I say it like that, it sounds shocking. This is TOO MUCH PREDNISONE and I wish it wasn’t like this but the flares come and avoiding taking it only lands me in the ER. That is not where I like to be.
I am kind of wary, will I know how to use it appropriately? Am I a responsible enough patient to be given full control? My pulmo says yes but I have my doubts. True, I know a lot about asthma and I certainly am used to how my own asthma presents itself. I was teaching the med student in the clinic a thing or 2 today. Poor guy was only second year and was sooo confused about asthma meds.
Here’s hoping I just stay well and won’t have to make too many executive decisions.
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.
It is really difficult to define and describe both the notions of asthma control and severity. I think it’s difficult for patients to articulate what their level of control is, and it’s also difficult for physicians to assess it in their office. In addition, people can be bothered to varying degrees by the symptoms they are experiencing. A new asthmatic will (appropriately) be distressed by mild bronchospasm whereas the most seasoned asthmatics can carry on with severe breathlessness.
There are several guidelines out there which aim to define asthma control in an objective way. Some measure by how many times a bronchodilator is used in a week, or how many ventolin puffers are used per year. Other measures include days of missed school/work, frequency of unscheduled doctor visits/ ER visits, etc. There are all good things to assess, but no one criterion will give the whole picture. Asthmatics are just too darned variable!
I think that most asthmatics have skewed perceptions of how they are doing. We see ourselves as less sick or more in control than we actually are. That’s human nature and that’s how it goes for most things, not just illness. As bad as the bad times are, they can be forgotten when considering the big picture. I’m trying to take an honest look at how my asthma has been recently, just for kicks.
When I saw my doctor last week, I said that things were good, that’s what I would say if I saw him today. When he was asking me his questions, I could tell that he was less than satisfied with my answers.
Despite feeling good overall, I still need my ventolin every day. On some days, I will need it frequently, and if I’m running, you can bet I’ll be using it a lot. Do I wake up at night with asthma symptoms? Yes, especially if I’ve exercised that day, but that doesn’t mean I’m having a “bad night” every night. And YES, my asthma did get out of control last week, to the point where my inhaled medications were not helping and I had to resort to prednisone. BUT the point is that I took the pred early-on-ish and I had my asthma back in control within 2 days (this is a good thing).
I’m not a short-sighted-silly, and I’m not stuck in denial. I know, when I think hard on it, that these are not signs of mild asthma, nor signs of asthma which is particularly well-controlled. I know that your average family doctor wouldn’t be too pleased when presented with the above. But the thing is, I feel like my asthma is good right now, I really do. I’m living a really normal life, doing everything I want to do, and I AM RUNNING. So I’m not fussed about it, I’m in control.
This brings me to my next point: the runnning. I feel great when I run, the adrenaline I get from it is beyond compare and my body is thanking me a thousand times over. But I still get tight, I still cough and I go through a lot of ventolin. As I said above, it also makes my nighttime symptoms a bit worse. The gist I get from people is that they assume that now that I can run, I must not have asthma symptoms any more. I have told a few people that I do in fact feel my asthma get worse in the hours after a run, and their response seems to be then why the heck do it???
Cause I can. Plain and simple. I told myself I could do it, tried it, and realized that I can do it. I seem to have asthma symptoms whether or not I’m physically active, so I might as well take the route that is actually good for my body.
So, all these convoluted ramblings to say that my personal perception of my asthma at this point in time is that it is actually quite good. Also, I love to run.
Wow, what a difference 5 degrees makes. Running in 13 C weather? smooth sailing. Running in 6 C weather? HURTS. Now I remember why I quit cross-country ski racing and speed skating. But seriously, I was not prepared for the amount of lungular pain of today’s run. The phlegminess was also quite unpleasant. I went for my 5 km loop but I’d estimate I walked about 2 km out of that, which is a little disappointing. Still, I’ll find away around this chilly air. Hopefully it doesn’t involve pulling out the balaclava this early on in the season 
.
As a side note: I KNOW that we do not actually have pain receptors in the lungs. But it still feels like my lungs hurt.
My doctor’s appointment was wonderful. I’ve told you all how much I respect and appreciate this guy before, but he never ceases to amaze me. It’s just the way he asks me the most pertinent questions, looks me right in the eye as I’m answering, and never lets me go until he’s sure he has a full picture of what’s going on. I was really excited to tell him about my running, which he approves of. He thinks I should be asymptomatic after running (which I’m not), but he agrees that I know what I’m doing. At the end he said “well everything sounds pretty good!”. I smiled and said “I thought so too”. Yaaaaaay. The thing I appreciate the most is that at the end of each appointment, he asks if I’m happy with everything else, giving me pretty much the perfect opportunity to voice any other concern I may have. Only once, in a moment of sheer desperation, did I say that I wasn’t, but I sure do appreciate the gesture.
You probably could guess that I’m warming up my popsi-lungs with a cup of tea right now! It’s back to the studying very soon!
I’m having a hard time assessing how I feel. I know that I’m exhausted, but I have no idea why, I’m chalking it up to allergies and maybe staying out too late on the weekend. The lungs are certainly not optimal, but they’ve been worse. I just wish I had a bit more energy today.
I have a doctor’s appointment this afternoon with my perfect family doctor. It’s just a check-up, as he likes to have these every so often, plus I’ll need some refills soon. I’m sure it will go well, I can’t wait to tell him I started running; I think that will speak volumes about how my asthma control is 
Then I have a running date with a friend, which I am still fully up for. It’s getting ccccold here, I’m busting out the gloves next time I go out.
How is everyone surviving??
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.
So. I am nearly out of Singulair, a visit to my friendly family doctor is in order. She is a big fan of preventative medicine and thus the yearly physical. I am in often to see her for asthma stuff, and whenever it’s been close to a year since my last one she starts to nag me. I knew that if I just booked a regular appointment to get my refills she would ask me to return for a full physical in a couple of weeks. And since she only gives me so much medication at a time, there’s no way for me to disappear for months and months. Soooo, as soon as I got home from university I bit the bullet and called to book a physical, which will be happening tomorrow. I’m sure that’s exactly what she aims for. But I’m not happy about it.
