Recent health setbacks require us to find a more accessible home

In case you hadn’t noticed, I didn’t file a column last week. I missed you and feel like I need to explain.

My body told me I needed to take a break. I had back-to-back medical appointments that left me wiped out, so I decided to listen to my body. Little did I know at the time that this would lead to even bigger changes.

When I was diagnosed with idiopathic pulmonary fibrosis in 2017, my world changed immediately and forever. In that moment, I didn’t realize the gravity of the changes my wife, Susan, and I would face. Even today, we can be caught off guard, which proved to be true in recent weeks.

Susan and I bought our current home in August 2011. Today, 15 years later, we’re facing a decision about a home we have loved but is no longer right for us.

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When I received a bilateral lung transplant in 2021, we knew it would be a new chapter of life, with new challenges. My recent hospitalization with shingles and a subsequent diagnosis of foot drop has accelerated our plans. Our beautiful, multistory waterfront home was suddenly less welcoming.

My foot drop requires me to use a walker to move around, primarily on the main floor. I can’t use the stairs by myself. To shower, I have to go upstairs and require hands-on assistance, even with a roll-in shower. We’ve been talking about downsizing for some time, and suddenly, that time was now.

No one knows how long foot drop will be an issue for me. Initially, my team said it could last months. The physical therapist recently told me it could be up to a year. I intend to continue to work hard to regain the use of my foot and my mobility.

The criteria we used

We toured a number of homes. The immediate challenge with older constructions was that my current walker wouldn’t fit through the bathroom doors. This didn’t seem to be the case in the newer constructions we visited.

But we had to look at this differently than whether my walker would fit through the bathroom door. We had used five activities of daily living — bathing, dressing, transferring, eating, and incontinence — to assess my need for a healthcare aide following my release from the hospital. Requiring any two of these qualified me for assistance. They also turned out to be good criteria for looking for a new home.

In my case, I required assistance with bathing, dressing, transferring, and incontinence. So we looked at the features in each property based on those criteria.

Using bathing as an example, can I roll my walker into the shower and sit on a shower chair? Will the person assisting me be able to provide hands-on help to get me positioned on a shower chair and in bathing areas I cannot reach?

I have little to no control over my lower left leg and left foot. Dressing, especially anything involving that side of my body, requires assistance. Underwear, pants, and compression socks were the three primary areas I needed assistance with there. My left shoe is fitted with an ankle-foot brace that is inserted in my shoe and strapped to my leg. This requires sufficient space for myself and the person helping me.

I’m learning that transferring is a learned skill that must be practiced. Two of my primary areas for transferring assistance are using the toilet and getting into vehicles. I’m not always able to maneuver my walker to be adjacent to the toilet, thus requiring assistance. Getting into and out of my truck can also be a challenge. It’s more easily accomplished with assistance and reduces the risk of falling.

Finally, there is incontinence, which is something I never thought I’d share in a column. My care team has prescribed torsemide, a diuretic, to assist in reducing edema. I don’t always have a toilet available, so I carry plastic urinals like the ones in a hospital setting. I must also wear some form of incontinence protection, which is necessary for maintaining my quality of life.

We’re continuing to look for our forever home. We thought we had found it in 2011, but we hadn’t anticipated all that life has thrown at us. Still, we accept the challenge in order to 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.