Post-hospitalization rehabilitation and recovery have been hard

Rehabilitation from serious health setbacks is hard. This week has repeatedly proven that to me.

Since being diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I’ve learned a lot about the disease. But I haven’t learned everything yet.

During my IPF journey, I wasn’t hospitalized after my diagnosis until I received a bilateral lung transplant in July 2021. Ten days after that complicated procedure, I was discharged from the hospital. After that, over the years, I was hospitalized twice for seven days each. Then, last June, I was hospitalized for 17 days following a shingles diagnosis. I finally went home to continue with my rehabilitation.

In last week’s column, I discussed the path I took to get home and the level of support I was receiving. What I’ve learned over the past week is that rehabilitation is difficult, for various reasons.

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Pain management is an ongoing issue for me, for example. I currently manage my pain with a combination of medications.

I’ve also been titrating, or reducing the level of the prednisone I take from 60 mg per day to my maintenance dose of 5 mg per day. During this titration, my tremors have been terrible, especially in my hands. You can imagine typing this column when the tremor takes over control of my hands, resulting in a string of random letters.

Using a walker is also challenging. I spend most of my time at home on the main floor of the house. We had to move some furniture around to allow for walking paths around the house. I never imagined that using a walker would be so hard. Boy, was I wrong.

While moving around the house was difficult, being outdoors was harder. At one point, I had to enter a building that offered handicap parking but no opening devices on the exterior doors. I also now fully appreciate how far it is from handicap parking to buildings. It’s farther than most people think.

Pushing forward

The skilled nursing care I’m receiving at home has been helpful. Physical therapy has provided timed exercises to monitor my improvement. I also do safety exercises, primarily for sitting and standing.

My home health aide taught me some valuable lessons, too. If you’ve never experienced the assistance of a good home health aide, let me tell you, it makes a big difference. When I returned from the hospital, I needed assistance with bathing, dressing, eating and meal prep, stairs, and sometimes toileting. My home health aide was ever present.

Another challenge I had was maintaining my dignity under these circumstances. With encouragement from my home health aide, including constant reminders that this is her job, I became more comfortable each day.

I’ve written about giving grace in the past, but this was a new experience for me. I’d never used a walker before. While I’m behind it, the distance in front of me seems much greater. I remind myself that it’s temporary, and taking a break every 30 feet is OK. I’m grateful there is plenty of grace around me.

I know I’ll recover. If this is the worst thing that happens to me as I celebrate five years with new lungs, I consider myself blessed. Each year since my transplant has given me new opportunities I wouldn’t have had without the transplant. My readers have continued to walk with me on this journey, and I’ll continue to live my best life while making 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.