No one really enjoys being admitted to the hospital, but for many patients living with a chronic illness, hospitalization is inevitable, and can bring both comfort and relief. At least, that has been my experience while living with idiopathic pulmonary fibrosis (IPF).
There has been a lot of talk among many lung disease communities about the film “Five Feet Apart.” I won’t belabor the plot, but the film is set in a hospital and showcases two teens with cystic fibrosis who are inpatients on the same floor. The more I watch this movie, the more I can relate to the patients’ experience of learning to adapt to being in the hospital.
The relationship between the main character and her healthcare professionals is touching. It showcases a balance of the professional and personal, something I can relate to when it comes to my health team. These individuals are the reason I find comfort in hospital admissions; I know they have my best interests at heart. They are honest and upfront with me, despite having to share difficult news. They are also understanding and accommodating, especially when it comes to pushing the boundaries of my disease.
One of the many reasons I like “Five Feet Apart” is because it also normalizes the hospital experience. One of the characters transformed her room by bringing in items of comfort from home. That’s important to me when I am admitted. It also realistically showcases the friendships that can be made in the hospital. While losing friends with IPF never gets easier, I am often thankful and comforted when I’m admitted to the hospital and there is a patient I know just down the hall.
I am also glad to see familiar staff faces when I am admitted to the transplant center, which I know better than the local hospital, despite it being farther away from my home and family. I know and trust the team at the transplant center better than anyone else. They have become part of my family throughout this journey with IPF.
In particular, there are five healthcare professionals who have stood by my side since my diagnosis. I don’t know what I would do without these individuals:
- Transplant coordinator: Before being thrown into the world of chronic illness, I didn’t know this type of role existed. Not only do these individuals take the time to review all the aspects of transplantation — including the mental, financial, physical, social, and emotional implications — but they also advocate on the patient’s behalf. They act as the liaison between patient and healthcare team, voicing concerns and hopes for the transplant journey. My coordinator knows me better than some of my close friends, and I’d be lost without her.
- Physical therapist: Some days, I’d argue that this individual is someone I could live without, but that is only because he pushes me. However, that’s for my own benefit. After any prolonged hospital admission, surgery, or exacerbation, my physical therapist has been there to see me through lying weak in a bed to regaining my strength and walking again. We move at my own pace, while still achieving his goals that ultimately benefit me. He has the patience of a saint, and I am so thankful for his encouragement.
- Pulmonologist: It goes without saying that I wouldn’t be able to manage my lung disease without this individual. He encourages me when I need it, and is honest or blunt with me when I deserve it. Not only is my pulmonologist professional, prompt and courteous, but he also takes an interest in my personal life and passions. He is the epitome of a physician who takes a holistic approach to treatment.
- Social worker: I don’t know where I’d be without the practical assistance of my social worker. We’ve worked together on filling out various applications and understanding medical paperwork, and spent time talking about the impact this disease is having on my life. She has wiped away many tears, and is always compassionate and empathetic in the way she supports me.
- Favorite bedside nurses: I can’t help but have my favorite nurses when regularly admitted to hospital. They go beyond duties at my bedside and take personal interest in how I cope with long hospital admissions. We spend time watching movies when I can’t sleep at night and talk about my hopes for the future.
I don’t enjoy being admitted to the hospital, but these five individuals often make my inpatient stays better, and I am very thankful for them.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.