9 times out of 10 I have an agenda when I walk into any of my health care professionals' office. I count off the items on my fingers and push each issue until I'm satisfied. Then I sign orders to make sure each physician's notes and test results are sent to the others. So following my faint, I naturally called my Pulmonologist in addition to my PCP with some concerns. In a nut shell it went a little like this:
KATE: Hey! I just wanted to let you know that I passed out yesterday. According to my PCP, I have a shortened PR interval and orthostatic hypotension. I've been on this Dulera inhaler for about a month and while it's absolutely helped my wheezing, I still have a tight chest when I run and I haven't been sleeping well. I'm worried there is a connection between my faint and this prescription and maybe I should get off this medicine?
NURSE 1: Ok. Let me ask the doctor and I'll give you a call back!
a few hours later...
NURSE 2: I'm just calling on behalf of your doctor, he doesn't want to stop any treatment that is helping your asthma and it sounds like the Dulera has stopped your wheezing. The chest tightness and passing out, those are cardiac issues and as a Pulmonary Specialist we deal with breathing issues. So we're not going to change your prescription and we will see you at your appointment in April. Also, please make sure that your PCP understands that Dulera can exacerbate cardiac issues. He might want to take you off this prescription. Ask him to send us his notes!
KATE: Wait. My PCP needs to remove me from Dulera? Aren't you the prescribing physician?
NURSE 2: Yes. But the Dulera is helping your breathing which is what we are concerned with. We don't deal with heart issues and haven't seen your official records. So your PCP needs to remove you from this inhaler if it's causing cardiac issues. Which he would know. Not us.
KATE: And this inhaler can cause cardiac issues?
NURSE2: Yes! It's very important that you make sure your PCP is aware of those side effects right away! You need to call him immediately. And if they decide to remove you from this prescription, let us know.
Then I thought, "Oh my god! I'm going to die!"
Naturally, I panicked. And I called my PCP who is at a conference the rest of the week. I opted to speak with the triage nurse.
KATE: So, my Pulmonary person said it was urgent that I tell my PCP that my inhaler could exacerbate cardiac issues but they don't want to change my meds because it's helping my asthma and cardiac issues are not asthma issues. But... I mean... if this is the problem - shouldn't I stop taking it immediately?
TRIAGE NURSE: The prescribing physician wants you to tell your PCP to take off this medicine?
KATE: Well, no. Just give him the option I guess?
TRIAGE NURSE: Well, it sounds like they are covering their behinds. I would say with your Holter this weekend you are going to want to keep your medication consistent until after the test. But I'll make sure your doctor gets this message. He'll be back next week.
So I change nothing. Until I see the Cardiologist. And I tell him:
CARDIOLOGIST: Tell me what you think caused you to pass out.
KATE: Probably the orthostatic hypotension? But, I'm also on this inhaler which can exacerbate cardiac issues. And I'm not sure I like it anyway. I've been just off since I started it. I passed out, I've had some headaches. I'm just off. This thing can affect your adrenal gland... maybe that's happening? Could have caused the orthostatic hypotension?
CARDIOLOGIST: Yeah, I don't think it's causing your cardiac issues. But don't take something that makes you feel that way. I would get taken off that immediately but it's up to you.
That's all I needed to hear - No more Dulera for me!
KATE: Hey, I don't want to take Dulera anymore. I'm not sleeping, I'm getting headaches, I just don't like it. Do I come in? Do I try something different?
NURSE 1: I'll ask the doctor and let you know!
later
NURSE 1: We have a new prescription for you. You can pick up a sample today from the front desk to see if you like it. Don't start using it until tomorrow through so the Dulera is out of your system, ok?
KATE: Oh, ok. What's it called?
NURSE 1: Asmanex! And you'll need to call your insurance company and ask if we need to get this one pre-authorized. You can do that while you're on the sample. Then call me back to get the prescription.
KATE: I don't need to come in?
NURSE 1: Nope! We will see you in April!
How the hell is my doctor treating me without talking to me?
How the hell is throwing drugs at a disorder in the dark considered acceptable care?
How the hell am I supposed to be an informed patient when my doctor's care doesn't come with a reason or an explanation but... a message from his nurse?
I picked up the sample. I used it for a day. Then decided it's time to be off drugs for awhile. It's been two weeks and the Pulmonary office has not called me to see if I want a prescription filled out or not. I guess they give as many shits as I do. The goods news is that I'm sleeping better, my head aches have stopped, and I feel more like me.
The responsibility of one's health back in one's own hands. Be your own doctor first. This means scheduling well visits, making a list of things to discuss at your visit before you arrive, and walking into that office with a game plan. It means picking a physician that is on your team. This guy is only on his team. So I fired him.
Tuesday, February 18, 2014
Wednesday, January 22, 2014
My Holtor Monitor Run
Last Friday I was hooked up to a 48 hour Holtor monitor. It was more or less like having a third boob for the weekend. A smelly third boob because I wasn't allowed to shower while wearing this sucker. Other than that, it doesn't really impede your routine or life. It's just... there. Recording your heart rhythm for 48 hours. I guess a lot of people strap on this device and then sit on the couch for 2 days because they don't want to have something dangerous on the record. I'm not like that.
I was determined to go for a run while wearing my Holter monitor. So I recruited a chaperon (doctor's orders) and I planned my favorite short neighborhood run. It's just short of 4 miles, includes both long, slow inclines as well as a steep climb or two. I mostly love it because the road follows a beautiful stream past an orchard and through the woods down a private road just far enough away from civilization to be quiet and serene.
I will willingly admit that I was afraid of what might happen on this run. It could be a repeat of my last run: extremely tight chest, inability to catch my breathe, extreme fatigue at the end, and breathing challenges my rescue inhaler couldn't help. Or, I could pass out. Again.
What I like about this run is the easy start down a steep mountain side to warm up before a casual winding decline around an orchard. This is the easy part. And its builds confidence before you approach the 3/4 mile gentle but sneaky incline. I wanted to include an incline on this run to see how it impacted my heart rate. I anticipated walking. I've done it before. Several times. But I also knew that if I displayed strong asthma symptoms, my chaperon was going to pull me. Whether I liked it or not - if I screwed this up I was done. So I tried something different.
I intensely focused on the road no more than 5 feet in front of me. I didn't look around. I didn't evaluate the steepness in front of me or the distance before a shift to a kinder elevation. I just stared at the road. And I only thought about my air.
My chest tightened up fast. Within the first mile. Maybe within the first half mile. Maybe less than that if I'm feeling honest. Instead of panicking and losing hope, I decided that it was ok. I let my chest be tight. I accepted that is how if felt and I invited the tightness to stay awhile. I told my chest I wouldn't bother it more than necessary. Instead I imagined the air I took in rolling around my mouth before diving down the back of my throat and deeper into my body than it's accustomed. It diverted around my chest, through my back, before saturating my stomach with oxygen. To ensure it did not crowd the tightness in my chest for space, I consciously forced my belly to protrude outward with each breath and create space.
Several times I felt a strong urge to gasp for air. But rather than obliging this instinct, I asked it to be patient. There is always an opportunity to gasp for air. But what would happen - if just this once - we tried something different? What if we waited for one more deep breath to quiet our body? What if we cut our pace in half and waited a few more strides to see if that gasp was really necessary. I didn't say, "No." I simply asked if we could wait. And my lungs let me. And together we worked through the urge to panic and gasp and give up. And we did it the whole way up the hill.
A couple times my chaperon tried to talk to me. That didn't work out. I barely acknowledged that words were spoken. I was focused. At the top of the hill, we turned and headed back down. I was a more social runner at that point. Able to converse and breathe more freely as the tightness let up a little and the air seemed plentiful. There was an occasion or two that my chaperon pulled ahead of me by a few strides and my gut reaction was to quicken my pace. But I knew that would only cause trouble. So my gut thought was, "you suck." Well, maybe I do. But maybe I don't. Maybe I have some health stuff to deal with and I promised myself that this was my run. And maybe that promise is more important that my chaperon's pace. And maybe honoring my promise to myself will feel better than trying to force my body to do something it can't and then blaming it for failure. Maybe having a walk-free, asthma-free run at a super slow pace will feel better than imagining what my chaperon secretly thinks of my potential suckage. In fact, maybe my chaperon sucks because at this moment - cuz ain't no one close enough to catch me if I go down! So I let it go. And I just kept plodding along. And eventually my chaperon fell back in line.
As I mentioned, this run starts with a steep decent. And running downhill is fun. But getting home? I walk. That mountain is steep and I walk. Hell, my dog doesn't like to run up my street without a breather! But today I didn't. When I started back up the hill I wanted to know if I could do it again. I wanted to know if I control my breathe and control my urge to panic. And I did. I ran the whole thing. I ran up my own street! I didn't stop. I didn't need my inhaler. I was tired. Really tired. And it was mentally draining. But my body and I both made compromises and on the other side - it felt good. Really good. Hopefully my Cardiologist agrees!
I was determined to go for a run while wearing my Holter monitor. So I recruited a chaperon (doctor's orders) and I planned my favorite short neighborhood run. It's just short of 4 miles, includes both long, slow inclines as well as a steep climb or two. I mostly love it because the road follows a beautiful stream past an orchard and through the woods down a private road just far enough away from civilization to be quiet and serene.
I will willingly admit that I was afraid of what might happen on this run. It could be a repeat of my last run: extremely tight chest, inability to catch my breathe, extreme fatigue at the end, and breathing challenges my rescue inhaler couldn't help. Or, I could pass out. Again.
What I like about this run is the easy start down a steep mountain side to warm up before a casual winding decline around an orchard. This is the easy part. And its builds confidence before you approach the 3/4 mile gentle but sneaky incline. I wanted to include an incline on this run to see how it impacted my heart rate. I anticipated walking. I've done it before. Several times. But I also knew that if I displayed strong asthma symptoms, my chaperon was going to pull me. Whether I liked it or not - if I screwed this up I was done. So I tried something different.
I intensely focused on the road no more than 5 feet in front of me. I didn't look around. I didn't evaluate the steepness in front of me or the distance before a shift to a kinder elevation. I just stared at the road. And I only thought about my air.
My chest tightened up fast. Within the first mile. Maybe within the first half mile. Maybe less than that if I'm feeling honest. Instead of panicking and losing hope, I decided that it was ok. I let my chest be tight. I accepted that is how if felt and I invited the tightness to stay awhile. I told my chest I wouldn't bother it more than necessary. Instead I imagined the air I took in rolling around my mouth before diving down the back of my throat and deeper into my body than it's accustomed. It diverted around my chest, through my back, before saturating my stomach with oxygen. To ensure it did not crowd the tightness in my chest for space, I consciously forced my belly to protrude outward with each breath and create space.
Several times I felt a strong urge to gasp for air. But rather than obliging this instinct, I asked it to be patient. There is always an opportunity to gasp for air. But what would happen - if just this once - we tried something different? What if we waited for one more deep breath to quiet our body? What if we cut our pace in half and waited a few more strides to see if that gasp was really necessary. I didn't say, "No." I simply asked if we could wait. And my lungs let me. And together we worked through the urge to panic and gasp and give up. And we did it the whole way up the hill.
A couple times my chaperon tried to talk to me. That didn't work out. I barely acknowledged that words were spoken. I was focused. At the top of the hill, we turned and headed back down. I was a more social runner at that point. Able to converse and breathe more freely as the tightness let up a little and the air seemed plentiful. There was an occasion or two that my chaperon pulled ahead of me by a few strides and my gut reaction was to quicken my pace. But I knew that would only cause trouble. So my gut thought was, "you suck." Well, maybe I do. But maybe I don't. Maybe I have some health stuff to deal with and I promised myself that this was my run. And maybe that promise is more important that my chaperon's pace. And maybe honoring my promise to myself will feel better than trying to force my body to do something it can't and then blaming it for failure. Maybe having a walk-free, asthma-free run at a super slow pace will feel better than imagining what my chaperon secretly thinks of my potential suckage. In fact, maybe my chaperon sucks because at this moment - cuz ain't no one close enough to catch me if I go down! So I let it go. And I just kept plodding along. And eventually my chaperon fell back in line.
As I mentioned, this run starts with a steep decent. And running downhill is fun. But getting home? I walk. That mountain is steep and I walk. Hell, my dog doesn't like to run up my street without a breather! But today I didn't. When I started back up the hill I wanted to know if I could do it again. I wanted to know if I control my breathe and control my urge to panic. And I did. I ran the whole thing. I ran up my own street! I didn't stop. I didn't need my inhaler. I was tired. Really tired. And it was mentally draining. But my body and I both made compromises and on the other side - it felt good. Really good. Hopefully my Cardiologist agrees!
Wednesday, January 15, 2014
Syncope? I don't see a sink anywhere...
"Alex. I'm broken"
"You're not 'broken'..."
"I am. I'm going back to plan B. I'm taking up video games and golf."
"I don't think you actually want to do that. I don't think you'd enjoy it as much as the other activities you've been pursuing."
"Ugh, you sound like my Chiropractor. But look, the healthier I try to be, the more broken I actually am. And none of this interrupts my daily life! It's only a problem when I'm active. I could play video games and be fine. Instead, I joined CrossFit and got a Chiropractor. I started running and got a Pulmonologist. I joined a gym - a very basic gym - and now I'm going to have a Cardiologist! Who the hell has a Cardiologist at 27? I just ran a freaking marathon for crying out loud!"
"... People who pass out at the gym?"
"Well there are only ever really ridiculously old people in their waiting rooms....who did not run marathons last year."
So I passed out at the gym.
Hypothesizes:
- I thought maybe it was because I spent the previous evening doing breathing exercises that teach you get comfortable with a feeling of suffocation. (That's for another blog post...)
- The very rude lady at the front counter of the gym thought it was because I didn't eat eggs for breakfast. Rude.
- My roommate thought is was a psychological response to forgetting my inhaler and using a heart rate monitor for the first time.
- The trainer at the gym hasn't gotten to the why yet, he's still bewildered that it happened in the first place and feels bad that he didn't catch me.
I guess this is why it's important to have primary care physicians. And co-workers who won't let you out of their car until you call to set up an appointment with said physicians. I wouldn't have pushed the doctor appointment... but I had this discomfort in my chest after leaving the gym that was kind of nagging. Turns out - that was just an out of place rib. Or a few of them. Nothing serious. It may be a result of my fall. Or, my lungs pushed it out of place when they were trying to breath and being stressed. That's happened before. Maybe an over adjustment at the Chiropractor? Anyway... I digress.
I went to the doctor who ordered an EKG and a lying, sitting, standing blood pressure. I have orthostatic hypotension:
Which... is not that big of a deal. I don't think so anyway. Explains everything. Well, it would explain everything. If there wasn't a "slight hiccup" on my EKG. A shortened time between my heart's lub and dub mean no weight lifting, no unsupervised exercise, and no driving until further notice. And by further notice I mean 2 days with a Holter monitor and a consult with a Cardiologist.
FML.
I guess the asthma fix is going to have to get in line behind a heart fix.
Special thanks for this post goes to:
- My body for keeping things interesting.
- My co-workers who took turns calling me yesterday so their concern did not feel like harassment.
- My awesome boyfriend who fortunately likes to drive.
- My supervisor who think working from home is better than getting rides to the office.
- And lastly, my dad. Who waited until I was finished crying on the phone before telling me had to get back to work. And calling later that day to suggest I get a second opinion.
"You're not 'broken'..."
"I am. I'm going back to plan B. I'm taking up video games and golf."
"I don't think you actually want to do that. I don't think you'd enjoy it as much as the other activities you've been pursuing."
"Ugh, you sound like my Chiropractor. But look, the healthier I try to be, the more broken I actually am. And none of this interrupts my daily life! It's only a problem when I'm active. I could play video games and be fine. Instead, I joined CrossFit and got a Chiropractor. I started running and got a Pulmonologist. I joined a gym - a very basic gym - and now I'm going to have a Cardiologist! Who the hell has a Cardiologist at 27? I just ran a freaking marathon for crying out loud!"
"... People who pass out at the gym?"
"Well there are only ever really ridiculously old people in their waiting rooms....who did not run marathons last year."
So I passed out at the gym.
Hypothesizes:
- I thought maybe it was because I spent the previous evening doing breathing exercises that teach you get comfortable with a feeling of suffocation. (That's for another blog post...)
- The very rude lady at the front counter of the gym thought it was because I didn't eat eggs for breakfast. Rude.
- My roommate thought is was a psychological response to forgetting my inhaler and using a heart rate monitor for the first time.
- The trainer at the gym hasn't gotten to the why yet, he's still bewildered that it happened in the first place and feels bad that he didn't catch me.
I guess this is why it's important to have primary care physicians. And co-workers who won't let you out of their car until you call to set up an appointment with said physicians. I wouldn't have pushed the doctor appointment... but I had this discomfort in my chest after leaving the gym that was kind of nagging. Turns out - that was just an out of place rib. Or a few of them. Nothing serious. It may be a result of my fall. Or, my lungs pushed it out of place when they were trying to breath and being stressed. That's happened before. Maybe an over adjustment at the Chiropractor? Anyway... I digress.
I went to the doctor who ordered an EKG and a lying, sitting, standing blood pressure. I have orthostatic hypotension:
When a person stands up from sitting or lying down, the body must work to adjust to that change in position. It is especially important for the body to push blood upward and supply the brain with oxygen. If the body fails to do this adequately, blood pressure falls, and a person may feel lightheaded or even pass out. Orthostatic hypotension is the term used to describe the fall in blood pressure when a person stands (orthostatic= upright posture of the body; hypo= less + tension=pressure).
According to the American Academy of Neurology, the formal diagnosis of orthostatic hypotension requires a 20mm drop in systolic blood pressure or a 10mm drop in diastolic blood pressure within three minutes of standing. Often there is an associated increase in the heart rate, especially if dehydration or bleeding is the cause (if the patient is taking a beta blocker, the heart rate may not be able to respond with an increase).(Medicine Net)
Which... is not that big of a deal. I don't think so anyway. Explains everything. Well, it would explain everything. If there wasn't a "slight hiccup" on my EKG. A shortened time between my heart's lub and dub mean no weight lifting, no unsupervised exercise, and no driving until further notice. And by further notice I mean 2 days with a Holter monitor and a consult with a Cardiologist.
FML.
I guess the asthma fix is going to have to get in line behind a heart fix.
Special thanks for this post goes to:
- My body for keeping things interesting.
- My co-workers who took turns calling me yesterday so their concern did not feel like harassment.
- My awesome boyfriend who fortunately likes to drive.
- My supervisor who think working from home is better than getting rides to the office.
- And lastly, my dad. Who waited until I was finished crying on the phone before telling me had to get back to work. And calling later that day to suggest I get a second opinion.
Wednesday, January 8, 2014
From Zumba to Half Marathon... and Beyond! With asthma.
The blog is back! Well. Maybe. I'm thinking about it. This is NOT a commitment. We're going to see how it goes... The thing is: I need an attitude adjustment. And this might be a good place to start.
Since completing my first marathon my asthma has really crept up on me and seemingly taken over. I went from running 35-45 miles a week with strength training to running 4-5 miles a week and no strength training.
My pulmonary specialist says I need to control my asthma with medicine.
My chiropractors says I need to give up dairy.
My therapist says I need to try breathing techniques.
My boyfriend says not to worry because I still look good in running pants.
Since completing my first marathon my asthma has really crept up on me and seemingly taken over. I went from running 35-45 miles a week with strength training to running 4-5 miles a week and no strength training.
My pulmonary specialist says I need to control my asthma with medicine.
My chiropractors says I need to give up dairy.
My therapist says I need to try breathing techniques.
My boyfriend says not to worry because I still look good in running pants.
*sigh*
Who's right?
No, seriously. I'm asking you. Do you know? Because I have no idea.
And no one else - least of all the specialists - seem to have it figured out either. So, naturally I took my confusion to Google and found some really awesome runners with asthma who all started their blogs once they got their asthma under control. I found myself more envious/bored reading their race results than inspired/motivated by their journey. So I figured - what the hell? I've got lots of things to try and track anyway. Might as well make it public? Let's embrace frustration!
So here's the baseline:
Prescriptions:
Dulera maintenance inhaler twice daily.
PROAIR rescue inhaler as needed.
Alternative Strategies:
I'm day 3 Dairy free.
I tried the Buteyko breath holding time test.
My Results:
Well the dairy withdraw has had an immediate impact on my bowl movements! Talk about regular! Really comfortable... err. Sorry. This isn't the dinner table. I could probably save the poop talk for a different audience. Oops! Moving along...
(Haha... moving along... get it? Baahahahaha!! Sorry.)
In other news I'm blowing over 540 on my peak flow meter! Before using a maintenance inhaler, I usually blew in the 450-470 range. I only topped 500 after using my rescue inhaler and even then hitting the 550 was pretty rare. This is a measurable result that feels good!
And the Buteyko breathing test was a lovely reminder than I'm not normal or healthy. Apparently, the healthier you are, the less you breathe and the more oxygen you have. Some folks can exhale, hold their nose, and not feel a need to breath for upwards of 30-40 seconds. If you have a chronic condition (like asthma) you may need to breathe sooner. I needed to breathe after about 10-12 seconds which puts me in the "sick patients with health complaints and often on daily medication" category. Nail, meet head.
So this is it. This is where we start. With a road of breathing, gasping, reading, ice cream cravings, learning, prescriptions, and experiments ahead. I don't really know really know where it'll all end up. But I'm relieved to focus on something other than hating my body for awhile.
Subscribe to:
Posts (Atom)