When I was fourteen months old, I was diagnosed with severe asthma. Between my diagnosis and my 17th birthday, I had been hospitalized 46 times, on life-support 4 different occasions, and had doctors tell my parents that I wasn't going to make on 2 different occasions. I can remember my mom telling me that all the doctors that had treated me over my life (before I turned 18) had never seen an asthma case as severe as mine. So it was my pediatrician's thought that I spend a month in Denver, Colorado at the National Jewish Health (an academic medical research facility specializing in respiratory, cardiac, and allergic disorders).
My mother consented with my pediatrician's idea. Her thought was this would be the perfect opportunity to find the root of my severe attacks. I was 10 years old when we left for Denver, Colorado. My first time on a plane and the first time I had ever slept a night without my mother. During this month visit, I underwent sleep tests, variations of medications and dosages, therapy, and even a test where I had a thin tube inserted into my nose that had a balloon on the end which was blown up once inside my lungs. The purpose of this test was to measure my air capacity. I had another test which involved a thin tube that was inserted into my nose that I had to wear for 24 hours and this test was conducted to measure my acid reflux.
Writing this brings back so many horrible memories. I hated every minute of it. I use this as an example of research that benefits children and families because although I endured through these tests, it was for the benefit of my overall respiratory health and so that my parents could have peace of mind that they would never have another doctor approach them with the words, "We don't think she's going to make it". I highlight this experience because it shows how research can be looked as a "horrible experience" to one but the greatest gift to another. With this experience, can it be said that research had a thin line between barbaric and life-saving?
Monique,
ReplyDeleteWhat a terribly sad situation you had to endure with your severe asthma! It sounds like you truly were a participant in many things that weren't always seen as pleasant at any point. Your last statement is truly food for thought---there is such a thin line between the two, and unfortunately, it would seem you had to walk that line more than once. I do believe that there is a benefit to the research, and even though the risks were awful, it does seem to have made a positive difference.
Thank you for openly sharing your story!
Kate
Hi Monique,
ReplyDeleteIt is heart wrenching to hear about your personal experience with severe asthma. Just like any child who endures such a large ailment on such a tiny body, it can leave devastating emotional scars. I am happy to see how you became resilient from your experience. For the greater good, your experience has helped push along research for the children to follow. I'm sure that you have contributed in a major way. Thanks for sharing.
Monique,
ReplyDeleteI am sorry that you had to go through this hard situation during your childhood. Being separated from your mom when you were ten years old was also frustrating for you. However, your desire to get better and your mother consent to approve this research study saved your life and probably the lives of others with the same condition. It is so good that you made it, thank you very much for sharing this uplifting story!!!
Leticia
Monique,
ReplyDeleteIt is heart wrenching to hear what you endured but it is also a twist to pressing through for the sake of medicine. Often we overlook the pain of the child and work against research but this shines a good light on research done well.