5 Hospital Professionals I Couldn’t Be Without on My PF Journey

5 Hospital Professionals I Couldn’t Be Without on My PF Journey

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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
×
Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

2 comments

  1. Carmela says:

    hi Charlene–

    haven’t been in touch in a long time–simply trying to deal w/dangerous and excessive heat in NJ….I’m waiting to have my central air installed—I have floor model right now..

    What I feel in the hospital is safety and normalcy—something we both know is not part of our daily lifestyle anymore.

    “Five Feet Apart” beautifully illustrates the challenges we face and the accommodations we have to make to get around life’s issues that separate us.

    I am so delighted to learn that you are a “transplant” candidate. What terrific news; I was never sure about that.

    and BTW, I LOVE British Colombia—spent a lot of time sailing in the calm of the Pacific Ocean and visiting friends! Where in Canada do you live?

    Regards to you and our community—-
    Carmela

    • Charlene Marshall says:

      Hi Carmela,

      So nice to hear from you, thank you for writing and continuing to read my columns!

      So sorry to hear about the dangerous/excessive heat in NJ – Ontario is currently experiencing the same heatwave, and I’ll be stuck inside this weekend until it breaks. Today it is supposed to feel like 45 here, which is not safe for anyone. Did you get the central air installed? Stay safe!

      I agree with you re: how you feel in the hospital. While I despise being admitted, when I am not feeling well I do feel a lot more comfortable and safe when I am there.

      I’m glad you liked “Five Feet Apart”, I’ve watched it several times and take away something new from it each time. The acting in it is pretty great, as well as the message to the “outside world” about difficult it can be to use supplemental oxygen.

      British Columbia is beautiful I agree! I spent a week there last April and went up Whistler mountain, it was stunning. I won’t soon forget the views at the top 🙂 I live in Ontario, not ideal as I really want to be by the ocean. Have you seen on the forums that I am heading to Hawaii in September? I certainly can’t wait for that!

      Take good care,
      Charlene.

Leave a Comment

Your email address will not be published. Required fields are marked *