The Lung Life of a Cystic Fibrosis Patient: A Patient and Physician Perspective
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COMMENTARY
The Lung Life of a Cystic Fibrosis Patient: A Patient and Physician Perspective Gabriella Balasa . Nauman Chaudary
Received: August 13, 2020 / Accepted: September 4, 2020 Ó The Author(s) 2020
ABSTRACT
PATIENT PERSPECTIVE
This article is co-authored by a patient living with cystic fibrosis, and her treating physician. The first section of this commentary article is authored by a patient, who describes their experience of living with cystic fibrosis. The following section is authored by the patient’s physician, who discusses the management of cystic fibrosis in the context of the patient’s experiences.
Gabriella Balasa
Keywords: Cystic fibrosis; Patient experience
DIGITAL FEATURES This article is published with digital features to facilitate understanding of the article. To view digital features for this article go to https://doi. org/10.6084/m9.figshare.12911894. Digital Features To view digital features for this article go to https://doi.org/10.6084/m9.figshare.12911894. G. Balasa (&) Virginia Commonwealth University, Richmond, VA, USA e-mail: [email protected] N. Chaudary (&) Department of Internal Medicine, Division of Pulmonary Disease and Critical Care Medicine, Virginia Commonwealth University, Richmond, VA 23298, USA e-mail: [email protected]
The day I was born, the median life expectancy of someone living with cystic fibrosis (CF) was 31. I was shielded from this knowledge until about age 12, when I secretly read my mother’s diary. The words ‘‘inevitable’’ and ‘‘death’’ still stick in my memory. Today, I’m 28. CF is a genetic, progressive disease that causes thick, sticky mucus to build up primarily in the lungs, but also in the digestive tract and sinuses. Over time, this mucus breeds infections from bacteria, which I then inhale into my lungs; the cycle of infections and inflammation leads to lung damage, then eventually respiratory failure, and death. Lung transplantation is an option to prolong the life of someone who has severe lung disease, but it comes with its own set of challenges. I have come close to this reality, but have survived the last 10 years having around 30% FEV1 (a measure of lung function) and holding onto it as long as I can. Growing up, I did everything most other kids my age did—playing soccer and scootering. But I also did many things they did not. Every day before lunchtime, I would go to the nurse’s office and complete an inhaled breathing treatment, drink a weight gain supplement and take enzymes to digest my food properly. In the
Pulm Ther
third grade, I had four stints of hospital stays, each 2 to 3 weeks long, during which I received intravenous antibiotics. I graduated college with a degree in biology and was offered my dream job, but I did not take it. Already having only 30% lung function, spending hours a day on breathing treatments, attending frequent doctors’ appointments, taking antibiotics to treat the infections—not to mention maintaining a social life and community involvement—were not conducive to a fulltime working schedule. I also
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