Getting my affairs in order was crucial following my IPF diagnosis

Planning ahead benefits both you and your loved ones, a columnist explains

Samuel Kirton avatar

by Samuel Kirton |

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Three years ago, my life looked very different than it does today. I was at the apex of getting my affairs in order.

I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF), which is a chronic, progressive, and incurable lung disease. I still recall my doctor, Steven D. Nathan, the medical director of Inova’s Advanced Lung Disease Program and Lung Transplant Program, sharing that my prognosis was less than five years. During that same appointment, he recommended I get my affairs in order.

Initially, I thought my affairs were in order. I was wrong.

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Making the necessary arrangements

Before my diagnosis, I’d taken many of the actions normally associated with getting one’s affairs in order. I had an established trust complete with medical directives, a medical power of attorney, and a do-not-resuscitate order. I had a habit of reviewing it regularly, so I was confident the trust reflected my desires.

At the time of my diagnosis, I was 59 years old. Although I’d prepared them, I wasn’t expecting that any of the documents in the trust would need to be be called upon anytime soon. Acknowledging that my health status had now changed significantly, I sat down with my financial adviser, my estate attorney, and my wife, Susan. I asked the first two to ensure that Susan would have no issues when the documents came into play following my passing.

I reviewed my property assets, the things I owned, to identify actions I could take immediately. If an item was solely registered to me, I added Susan as an owner of that property.

In addition, we took care of anything that would’ve posed an issue for Susan following my death. A good example of that was my motorcycle. I’d been a motorcycle rider for a significant portion of my life, but I decided to sell my bike following my diagnosis. It was bittersweet no longer having a motorcycle of my own.

I also arranged my own funeral. My youngest brother, Wayne, had been in the funeral business his entire adult life. Together, we established what I wanted and met with a local funeral director to execute the preneed contract for my funeral and inurnment, including making the payment. That took care of another item that would’ve required Susan’s attention.

By June of 2021, I was at the clinic almost weekly and had been on the transplant list since March. I required 7 liters per minute of oxygen and could see the concern on my care team’s faces during each clinic visit. Susan and I didn’t expect that I’d make it to Christmas.

I’ve shared my view with you that attitude is everything. During this time, I summoned every ounce of positivity I could and was completely at peace with what the future held for me. Remaining positive helped me get through this difficult period, without a doubt. It also held up those around me. (As a side note, I even told Susan I’d write her profile for a dating site in the event of my passing.)

Even if you think you’re prepared, take a minute to review your affairs. Do it not only to ensure your wishes are known, but also to give your spouse, partner, or caregiver time to grieve without worrying about legal matters, which can feel of little consequence in the moment. Getting my affairs in order is yet another way I can make every breath count.


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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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