It’s been a decade since I first experienced asthma symptoms, although it took many months and many more doctor visits before I got a correct diagnosis. Those symptoms spun into a series of misdiagnoses, and I experienced barriers to accessing proper primary medical care here in Canada. These issues made my journey to a diagnosis far longer and more frustrating than it needed to be.
There’s nothing I can do about the past, but this is my story. This is what I experienced at the beginning of my patient journey when I was forced to learn how to self-advocate in a healthcare system that often doesn’t have patient care at the center.
The origin story: Is it asthma?
At a choir event in February 2008, I asked my friend to toss me my water bottle, commenting that my lungs felt tight. She asked if I had asthma — I thought I didn’t. Two days later, the feeling was still there.
In Canada, as in the United States and many other countries, it can be a challenge to find a family doctor, and I didn’t have one. Instead, I went to a walk-in clinic. A doctor took two seconds — I’m not exaggerating, it was that quick — to listen to my lungs and diagnosed bronchitis. I was sent off with a prescription for an antibiotic. It did nothing to help my breathing because, as it turns out, I didn’t have bronchitis.
I struggled another month before going to a different walk-in clinic. This doctor was more thorough, but still decided, again, that I had bronchitis. Off I went with another prescription for antibiotics. Once again, I didn’t improve.
A month later I returned to see the second doctor. This time he recognized that it might be “mild” asthma. He queried me on the pets in my house and decided that I might be allergic to my guinea pig (I wasn’t). He sent me off with a prescription for asthma medication.
For the next six months, I used that medication as directed. Sometimes I had better days than others, but my symptoms were difficult. I would have taken the medication more often, but I followed the rules and observed the correct dosage limits. It wasn’t pleasant.
Finally, I found a new family doctor. But that family doctor also ran a walk-in clinic — and I was treated like a walk-in patient. He sent me for labs and pulmonary function tests (PFTs), but I never got the PFT requisition. I only saw him twice, and by then, I’d found another doctor who was accepting new patients. I saw her for a “meet and greet” in mid-October 2008.
By the end of month, she had prescribed asthma medication intended for long-term improvement of symptoms. Both of us felt certain that I had been experiencing nine months of near-constant asthma symptoms, which were only partly relieved. It was likely, the doctor thought, that underlying inflammation in my lungs meant that I was never really free of asthma symptoms during that time.
When you have a chronic illness, managing it in a walk-in clinic setting — where your doctor doesn’t know you or have proper records of your care — just doesn’t work. The need for a “continuity of care” model is imperative when you have a chronic illness. You need to have a doctor who knows you, who has your medical records, and who can see you on a regular basis.
To this day, as I said at the beginning, I wonder if continuity of care in those first nine months would have made it easier to control my asthma now.
With asthma, mysteries abound.
Getting more clear-cut answers
After I settled in with my new family doctor, we tried everything to get my asthma under control. I connected with the online asthma community in late 2008 and soon started blogging. A friend who is a respiratory therapist suggested things to try, and my doctor agreed with most of these suggestions.
About a year and a half after my first visit to a walk-in clinic, I finally saw a respirologist —known as a pulmonologist, or lung doctor, in the United States. He finally did PFTs — but he didn’t do much else. I saw him twice, but I felt that he didn’t take me seriously.
I was also referred to an allergist who did take me seriously. My only allergy was to dust mites, and I finally received a thorough review of my medication options. At this point, I was already taking a combination of medications, but my symptoms were persistent. This doctor made changes that my family doctor hadn’t been willing to try.
I remember times in university having my lungs so tight that I found myself stretching across a desk to breathe. I still went to the university gym with my friends, but it was hard and unpredictable. Fortunately, switching up my treatment plan led to a lot of improvement.
With the switch in my medications, I started to feel better. Not perfect, but better. It was an extremely frustrating journey.
Even though my new allergist helped get my asthma under better control, I still had to use rescue medicine almost every day. Then my respiratory therapist friend told me about the Canadian Severe Asthma Network. At the time, they were working to launch a severe asthma research study. I contacted the primary investigator, and she directed me to the participating doctor in my province. If we couldn’t get my asthma under control, maybe we could at least learn something from my lungs.
I got a referral to this new respirologist — I refer to her online as Dr. Smartypants! — and saw her several months later. It turned out that, while I thought I’d been referred for research, I’d actually been taken on as a patient in her practice.
What a difference from the first respirologist! Dr. Smartypants did PFTs herself in the office. She was young, personable, and super smart. She truly worked with me. Even though I only see her every six months, she seems to remember that I have a good understanding of my asthma, so she doesn’t have to water down her explanations too much.
Dr. Smartypants is knowledgeable about new research. And for someone like me, who is willing to try almost anything that may improve my symptoms, this is incredibly helpful. Now that I’m more stable — I’ve been reclassified as “moderate to severe, well-controlled” — it’s less enticing to mess around with my treatment plan too much. My asthma is better controlled — still not according to the Global Initiative for Asthma guidelines, but better controlled from my perspective. Right now, it seems to make sense to stick with what’s working for me.
What I learned in the process
Asthma sucks, period. The journey from first experiencing symptoms to getting a diagnosis to achieving some level of symptom control was extremely frustrating. Sometimes it still is. That’s the nature of chronic disease. However, I did learn a few tips along the way that I hope can help people who are newly diagnosed:
1. Learn all you can
Read everything. It’s hard to make a good case if you haven’t done your homework. Sadly, our doctors often only have between 10 and 20 minutes to give to us, and sometimes they’re not experts on the condition. Use reputable websites to learn all you can about asthma and science-based treatments so you can go in armed with knowledge.
2. ‘Self-advocate’ is a nice translation of ‘be a pain in the butt’
Self-advocacy is hugely important, especially if you have difficult-to-control or severe asthma. Know your stuff, and push for more to be done if you need it. Ask for referrals. If you don’t click with a doctor, like I didn’t with my first respirologist, try to get referred to a new one. Ask for printouts of your PFTs.
3. Ensure your diagnosis is correct
A third of people who think they have asthma don’t actually have asthma when their diagnosis is re-evaluated, according to a 2017 study in JAMA. If you’re struggling to get your symptoms under control, talk to your doctor to make sure you’re treating the right thing.
4. Follow and be part of the research
Keep an eye out for what’s new in the asthma world. If current treatments aren’t the best fit for you, talk to your doctor about whether something new might be. If you’re eligible, consider participating in research that could help you, and others, someday.
My journey with asthma has been unnecessarily frustrating — especially in the beginning. I wouldn’t want anyone else to go through what I did just to be able to breathe better. Hopefully, these tips will help other people like me forge a better pathway to getting appropriate asthma care faster.
RESP-US-NP-00058 MAY 2018