Managing Medication as a Patient with PF

Managing Medication as a Patient with PF

Patients living with a chronic illness must learn quickly to manage their medication. Access to the right treatment can be a matter of life or death, especially when talking about a rescue inhaler in response to a respiratory crisis.

I’ve experienced one respiratory crisis since being diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago. The trauma associated with that event left me paranoid about keeping my medication readily available.

My mom is a pharmacist in the small town where I grew up. Recently, she mentioned how many summer vacationers had stopped at the pharmacy to refill or transfer a prescription that they had left at home. While I tend to forget something every time I go away, my medications are not usually what is left behind.

Some apps are available to help patients manage their medications, but I prefer a standard alarm. Every Sunday evening, the alarm on my phone reminds me to sort my medications and refill the pillbox that Mom gave me to manage my tablets.

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I gather the original pill bottles and sort them on the bathroom counter, carefully counting supplements, vitamins, and prescription medications. I ensure that each slot in my pillbox has the correct dosage. This process allows me to feel in control of something pertaining to my disease when so much of IPF feels out of control.

But medication management is more than counting tablets and refilling a pillbox. Following are a few things for patients with a chronic illness to remember about managing their medication:

  • Remember expiration dates: I am only required to take Ventolin (albuterol) as needed. Because I don’t use this rescue inhaler regularly, it often expires without my noticing. My mom typically reminds me of the importance of renewing the prescription. The efficacy of a medication can be compromised if it expires. I have an alert set for every three months to remind me to check expiration dates on my medications.
  • Know how to administer medications: Not all medications are taken orally. Methods of administration can include subcutaneous, sublingual, topical, or intramuscular. Proper administration is key to the effectiveness of a medication. It is also important for others to know how to administer your medication in the event of an emergency. Writing your own respiratory protocol keeps others informed.
  • Store medications properly: Some medications are sensitive to sunlight, or should be stored at a certain temperature. They can’t be left in the car or taken to the beach or on a hike. Store medications properly to ensure the best results.
  • Have the right equipment: Sometimes, it is difficult for patients to self-administer their medications. I can no longer use a Turbuhaler because I can’t take a deep enough breath to ensure the medication reaches my lungs. While regular inhalers or steroid puffers are easier to inhale, I worry that I will breathe in too quickly or not hold my breath long enough for the medication to reach my lungs. I rely on an AeroChamber to help with my inhaled medications.

Do you have any tips when it comes to medication management and IPF/PF? Please share in the comments below.

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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!
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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. Charlene, I sympathizes hundred percent with your story, let me tell you , you are a brave young woman a big advantage to many of us with IPF ..is that you are young and strong. still lots of time to live yet, I was diagnosed at the end of 2012. still living a normal life not exerting myself though .I´m 71. Wish you all the best for the future and a great graduation on your master degree, and a wanderful trip to Australia. best regards
    jaime

    • Charlene Marshall says:

      Hi Jaime,

      Thanks so much for reading my columns and reaching out via the comments. I so appreciate your kind words, and feel so touched by being able to work and interact with folks who also live with IPF – none of us should face this disease alone! So glad to hear you’re still living a relatively normal life after being diagnosed in 2012, that gives me a lot of hope. Thanks again for your kind words and I wish you nothing but the very best.

      Kind regards,
      Charlene.

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