Putting Patient Self-Advocacy Into Practice
There are times when it simply isn’t easy to be a patient. I would even extend that and say that sometimes being a human takes a lot of work. But being a patient is even harder when you have to be your own best advocate.
My patient self-advocacy journey: Unexpected symptoms
A recent medical adventure had me experiencing so many things. It first started with trying to get to some answers on some recent rib pain. I had a cough, which I thought was just something viral or related to asthma control.
Then I woke up suddenly one morning with this crazy rib pain. I knew that it likely was not something good, so I called my family doctor and got an appointment. Honestly, I thought it was just going to be either intercostal muscle strain or something similar.
I was shocked to discover how unwell I was! I was assessed as having decreased lung function and breath sounds. I was sent to the urgent care for an x-ray and CT scan.
Working towards a diagnosis
There was a suspicion that it might be a pulmonary embolism (a blockage in the lung) or collapsed lung. There was a part of me that felt that my family doctor may just be an alarmist.
I was given a choice: receive an outpatient x-ray (and likely be sent to urgent care anyways), or go straight there for evaluation. Neither option really seemed like the best, however, off to urgent care I went.
It was the standard fare of check-in, wait, triage, wait, see the doctor, getting quizzed about all the asthma things. I have to admit that this was the smartest urgent care doctor I think I have seen from an asthma perspective. They respected my knowledge as a patient and what my goals were.
We did have to agree and disagree at the end, as the x-ray showed something that may have been pneumonia. This was supposed to be an explanation. However, the center where my asthma is treated would have had this “pneumonia” confirmed by total sputum cell counts as well.
Advocating for myself
I agreed to connect with my respirologist before I would take the antibiotic. I had been trying to connect with his office and finally was able to make an arrangement to be seen. Phew! I was still in pain, wheezy and gurgling from mucus plug, but I was at least on my way to a diagnosis. At least that is what I hoped.
I saw my specialist and had a sputum induction and evaluation with their fellow. It appeared to be mucus plugging, so I needed to increase my mucus clearing and chest PT. I was waiting for my sputum results back and I still had this nagging rib pain.
Getting the true diagnosis
The next day I received the sputum results: eosinophilic inflammation. I needed to continue the mucus clearing for the mucus plugging and was told to take Tylenol for the pain.
Interestingly, we had a conversation about the connection between NSAID and asthma and they recommended that I switch to acetaminophen. I was finally getting somewhere!
It was interesting to note that my total cell counts were normal and there was no sign of the “pneumonia." I am glad that I was able to avoid antibiotics and advocate for further testing. This is hard to do, especially in urgent care when you are hoping that you are not wasting your time and that they will actually be able to help (plus physicians do not typically enjoy having a diagnosis questioned). However, I don’t feel that the patient should be the one that has to hope that they got it right.
Have you ever had to practice patient self-advocacy?
Have you had an experience where you have had to advocate for further testing or convince a physician to look differently or value your knowledge or insights? I would love to hear about your experiences in the comments below. You can also tell your asthma story here.
Have you had to practice patient self-advocacy?
Do you get muscle cramps caused by your asthma medicine?