Living with IPF Has Shifted My Financial Priorities

Living with IPF Has Shifted My Financial Priorities

Before I got sick, my life was pretty straightforward. I knew what I wanted to study in college, and I earned my bachelor’s and master’s degrees. And although I have struggles in the workplace due to living with idiopathic pulmonary fibrosis (IPF), I am lucky to have a career I enjoy.

But my financial priorities have had to shift since being diagnosed three years ago, which has been challenging.

As I watch my friends and peers pay down school debt and save to buy a home, I can’t help but feel defeated. While I know others have it worse than I do, I wish IPF wasn’t part of my life. I long for the normalcy of being able to financially prioritize things that are not medically related.

I feel privileged to have recently returned from Hawaii, but I know it will be a long time before I can save enough to enjoy another vacation of pure joy and relaxation. It wouldn’t take as long if I didn’t have to set aside money for unexpected medical issues.

I am beginning to have conversations with my family members about purchasing my first home. The one I rent may be sold soon, and local rents are astronomical. I don’t know if I’m ready for the financial implications of owning a home, but renting without building equity feels like a waste of money. I worry about whether I can maintain a home with a chronic lung disease, but I don’t want IPF to dictate all the important decisions in my young adult life.

This has led me to thinking about how other patients with IPF prioritize their finances. Following are my priorities, but perhaps there should be others:

  • Saving for transplant: The operation will be covered with Canadian healthcare, but post-transplant care has other related costs. Financial considerations of transplant include relocation costs, travel and parking at the hospital, post-transplant medications, time off work, and rehabilitation expenses. While crowdfunding is an option, many of us choose privacy over public fundraising initiatives.
  • IPF-related education: I am a strong believer in education. Learning to live with IPF has been difficult, so any opportunity to network or educate myself on this disease is important. Many of these opportunities are out of the country, so I’ve been saving to attend. I’ll see you at the upcoming PFF Summit 2019!
  • Saving for the unexpected: Patients with a chronic illness rarely know when their health will cause things to go awry. A savings account offers a cushion when paid sick days are depleted. We also must prepare for cuts in government funding or charity assistance for needed medications.
  • Achieving milestones: Life with IPF is anything but normal, but I’d still like to dream about achieving the same milestones as my peers. This includes the excitement of buying my first home or celebrating the end of my student debt. I’ve also written about the benefits of travel, and how it helps to ground me amid the uncertainty of IPF. I want to experience the pure joy that Hawaii brought me at least one more time before my lungs become too unwell.

Can you add to my list of financial considerations or priorities as a patient with IPF? 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!
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4 comments

  1. Phil says:

    Hi Charlene. Thanks for your courage and information and thoughts/column. I was diagnosed in May 2018 aged 60. I already had battled almost lifelong crippling arthritis and genetic ischeamic heart disease plus clinical depression. In 2014 I was also diagnosed with cirrhosis of the liver as a result they think of NAFLD. Particularly as I have never been a regular drinker. The IPF diagnosis I think broke me a lot and I ended up accepting my employers advised early retirement due to ill health. This has led to major stress, financial and otherwise, particularly as my 2 small employment related pensions are being taxed here in the UK and I am not due to receive my state old age pension until my 66 birthday on 8 January 2024 (currently set as £8500 per year for pensioners already in receipt of this). I have lost most of my daily social interaction through finishing work as well as most of my confidence. I am scared, isolated and in pain etc day and night due to all the different but sometimes overlapping symptoms of my combined life threatening illnesses I need to face and fight. Whilst I am very grateful for our free medical NHS service here in the UK, I still have many other financial commitments, as well as the perceived need to buy more organic and healthier food plus relevant health supplements and things like filtered masks to cover my nose and mouth to keep the cold air out and pollution and germs etc. Whilst I am trying to keep some positivity and look for online jobs or money making opportunities and/or 1 to 1 mentorship, most online supposed opportunities turn out to be scams or at least are asking me to pay quite a lot of upfront money for info and ongoing mentorship on trust? Anyway, please know that reading your experiences and thoughts have helped me. I am so sorry that you have this dreadful condition at your young age and I hope and pray that at some point a cure is found and made available to all lung disease sufferers. Many Thanks.

    • Charlene Marshall says:

      Hi Phil

      Thank you for reading my columns and reaching out via the comments – I always appreciate hearing from others, though I wish many times their stories were easier, such as yours. Sorry to hear of so many struggles financially – the impact IPF has on employment is grossly misunderstood and can be devastating on those of us learning to live with this illness. Keep looking at options online, as this often ends up being the best source of income for many of us living with IPF. One of the sites I began using was Fiverr. Check it out and see if there are any opportunities on there for you. Glad to hear you’re trying to stay positive, that is important, though I know it isn’t always easy. Hang in there and feel free to write anytime – there is some comfort in knowing many of us truly understand the struggles of this disease, including the financial aspect. Thinking of you, and also praying a cure is found!
      Charlene.

  2. Alfred Arnold says:

    Hi Charlene,

    Haven’t checked in on this forum for some time. I wanted to report that my last lung function test in August showed no significant deterioration since my initial diagnosis of IPF in November 2017. I am not taking any lung medications and feel generally good. I do have metastatic prostate cancer and had part of my bladder resected in March to remove a tumor. My cardio and thyroid issues are being being treated with medication. I feel quite fortunate at age 71 not to have to bear what young people with IPF do.
    With all the comfort and hope that you so selflessly impart to others I pray that some small measure of good fortune comes your way soon.

    Al

    • Charlene Marshall says:

      Hi Al,

      It is so nice to hear from you! I read your lung function update on the forums, and was filled with joy and gratitude that your function tests did not show a significant deterioration, that is such wonderful news. I hope you did some celebrating 🙂 Glad to hear you’re otherwise feeling well, and I hope your recovering from the tumour resection went smoothly. Thanks for your good thoughts and kind words – they are very much appreciated. I hope you continue to feel well and stay in touch. Wishing you nothing but the very best!
      Charlene

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