The Added Financial Burden of Homeownership with IPF

The Added Financial Burden of Homeownership with IPF

younger than 30

The financial impact of living with a life-threatening illness like idiopathic pulmonary fibrosis (IPF) can be overwhelming for patients. Thankfully, in Canada, we don’t have as much of a financial burden when it comes to medical costs. However, patients living with IPF still have several expenses related to care.

On top of pharmaceutical costs, financial stress can come from other expenses such as driving to and from medical appointments, hospital or clinic parking fees, rehabilitation equipment or programs not fully covered by healthcare programs, or relocation expenses during the wait or recovery period from transplantation. These are all costs directly associated with the management or treatment of IPF. But what about the indirect costs this disease forces upon a patient and their family?

IPF is a progressive disease that eventually robs a patient of their ability to breathe due to the fibrosis that develops in the lungs. Progression can be fast or slow, and it is often hard for physicians to predict when this disease will start impacting a patient’s physical abilities. When it does, additional costs and expenses begin to accrue for patients who are no longer able to maintain or complete the tasks they once were able to before their diagnosis. These costs are less directly related to IPF, yet patients wouldn’t have to deal with them if the disease wasn’t a part of their lives.

I was thinking about this the other day as I began my search for someone to help me with snow removal, as this is not something I can manage on my own anymore. This is just one of the added financial burdens that patients with IPF must deal with on a regular basis. Following are some of the others:

Lawn and yard maintenance

This includes snow removal, as I mentioned above. Sure, I have friends and family members who could help me with this, but as the homeowner, I don’t believe this should be their responsibility. They likely have their own homes to maintain. While they claim they are happy to do it for me since I have an extremely small driveway and no longer can physically do it on my own, it isn’t a task that they should worry about.

As a homeowner, I am responsible for clearing my own driveway and sidewalk after a heavy snowfall within 24 hours — it is a bylaw in the city where I live. With limited physical abilities, putting a time restriction on this is stressful. What if my friends and family can’t do this for me in time? Not only am I asking this huge favor of them, but now I also am asking for it to be completed within a timeframe. As a result, I have hired a company to help me as well as a lawn care manager for the summer months to ensure it gets done on time and efficiently. However, I am a bit resentful that I have this added expense because I have a lung disease. If I didn’t, I would be happy to do this myself as a proud homeowner. This also applies to housecleaning and inside maintenance such as dusting and tidying.

Lost wages/time spent away from work 

I am lucky that my employers accommodate the abundance of appointments I have.That said, I am constantly using my sick or vacation time because of my disease. While this isn’t a direct expense that comes out of my pocket, it certainly is an indirect cost to me as I cannot use that vacation time for travel, rest, or relaxation, as it is intended to be used. It is hard to watch people take weeks of vacation in the summer months because they didn’t have to use their time throughout the year as I do for appointments. This feels almost like a punishment for living with a life-threatening illness.

Pet walkers

This is something I used to thoroughly enjoy doing myself. I loved to walk my dog, and while I can still take her on short walks, I hired someone to do it for me when it’s too hot or cold. Sure, I understand it is my choice to have a dog. But the therapeutic benefits for me certainly outweigh the negatives, and I already had my dog before I became sick. I just feel a bit frustrated about yet another added expense due to my disease.

Do you feel the added financial implications of living with IPF as a homeowner?

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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!

One comment

  1. ash says:

    Dear Charlene –

    I empathize with you – any difficult illness can rob one of everything, it’s trickle down to every other thing in one’s life. Every small thing becomes a big thing – just because one is not able to handle it as before.

    Money is a big deal when dealing with a complicated threatening illness.

    It’s like one has to earn a livelihood just to deal with these expenses on top of the illness.

    Community should be more empathetic. There should be volunteering set up to help people with tasks and other such needs – I feel.

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