Be Involved in Your CF Care
Having cystic fibrosis has taught me the invaluable lesson: Learning to value myself when it comes to my own health. I believe it is easy to get lost in the medical mumbo jumbo that is thrown our way on a constant basis. It is easy to be a “yes man” when it comes to treatment. It is easy to agree and nod our heads when a doctor is telling us “this” and “that”. But what about what we want? What about how we should be treated? I have learned in my own life experiences several things and unfortunately, I had to learn these things the hard way: experience.
Good and bad healthcare experiences
Over the course of my life having cystic fibrosis, I have encountered both good and bad doctors, good and bad medical treatment. I have felt like a guinea pig on numerous occasions, and I have taken medication without asking about what they were for and how that medication would have any long-term effects on my body. It is a horrible feeling when you feel like a doctor is not listening to you or respecting your input.
When my pain was dismissed
I remember when I was telling a doctor about my lung pain and how it hurt to breathe in, especially on my right lower lobe. It was very painful, and he just ignored me, never ordered tests, and just gave me a 7-day course of antibiotics and told me that I would be alright. Only I was not, I actually had severe case of pneumonia and was hospitalized days later. That pain is still prominent today as lung damage from what I would later learn was associated with bronchiectasis that I developed.
Enough was enough
I came to a point in my life where enough was enough and I told that doctor that I was no longer going to be his patient. I stood up for myself because I wanted to be in control of my treatment and my care plan going forward. I did not want to remain this chart to my doctor, I wanted to be named. I wanted to have decisions and be able to say this does not work for me because I was tired of being a “yes man”. I wanted a doctor who take my concerns seriously and talk to me without rushing me because they had other patients. I did not to keep being dismissed or being the person that they tried this and that on. I wanted to be part of my healthcare team; I did not want to keep being just another patient.
Finding the right care team
When I found my current CF care team, it was the first time I ever felt validated and listened too. I have options and my input is respected. It is a complete turn around from what I have experienced growing up and that is because I finally took charge of my health instead of leaving it solely in the hands of doctors. I genuinely feel part of my CF care team, we discuss my treatments and not only that, but they also take their time to hear my concerns and address them. If I do not understand something, they walk me through it. I have their phone numbers so I can reach my team at any time if I am unwell, and they walk me through everything. It is a united fight and I am so glad to be where I am in my health journey with CF.
Never give up on how you should be treated by a doctor and ensure that you are part of that care team because in the end, the common goal is YOU.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?