Home healthcare has been a positive experience for me

Growing up with pulmonary hypertension (PH), I was fortunate to avoid many situations that required home healthcare. My parents and I used the service a few times, mainly when we needed training for a new medication or when both my mom and dad were out of town.

My grandparents would occasionally stay with my siblings and me, and a nurse would come to either prepare and administer my Flolan (epoprostenol GM) infusion or to provide care for my central line. The nurses were specifically trained for the tasks, as PH medications can cause a great deal of damage if incorrectly managed. I’m grateful this service was available where we lived.

As a child, I never cared much for strangers handling things usually done by my parents. I didn’t like someone other than my mom cleaning my central line or when someone did something differently when mixing my medications. My grandma remembers that when I was just 5 years old, I was a bit bossy with home care nurses. But those visits weren’t common and became unnecessary as I grew older and could care for myself.

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When I was in the hospital following my heart-lung transplant, my healthcare team started piecing together the logistics of my discharge. Home healthcare was discussed, but we had little experience with it. Since my needs had greatly increased, we relied on my team’s knowledge and opinions about the matter.

During our discussions, I was disappointed to hear some providers say they had little faith in home healthcare, which they found to be unreliable. We were discussing either sending me home or to a transitional care unit, so I was dismayed to hear home healthcare described that way. 

I was eventually transferred to another hospital closer to home for a month before I was discharged. This medical center, where I now receive long-term care, coordinated a healthcare plan I could use at home.

At first, I mainly required respiratory care. I was discharged with a tracheostomy and needed supplemental oxygen and a night ventilator. Additional care included nighttime feeds via a gastrostomy tube until I was able to increase my oral food intake. I also needed weekly lab work.

My first week back home was incredibly hectic, with a lot to take in. But we soon established a routine. We were relieved that everyone, especially the respiratory therapists, was eager to help us. Five years later, that’s still true.

Reliable, knowledgeable, and experienced

Today, the same respiratory care team still manages my home care needs. Once a month, like clockwork, they coordinate a delivery of trach and ventilator supplies and check in on how I’m doing. They have a dependable emergency line, and when my ventilator fails at night, someone arrives at our house within 90 minutes to assess and resolve the issue.

We’ve also relied on home healthcare over the years to provide care for my PICC line, administer antibiotics, and do lab work when I have an acute illness. While healthcare rarely runs perfectly, I’m overall pleased with the people and level of service of the home system I have.

I don’t doubt that my five-star experience is different from what some others go through. I’ve heard stories about some home healthcare services failing patients. I’m grateful to have a team that took the time to coordinate my transition home while I still needed complex care. 

As a family, we’ve usually felt capable of managing my needs. It takes a pretty high level of illness to cause enough discomfort for me to go to the hospital. Knowing this, we always advocate for home care as my best option. It’s a relief that we have solid systems to support us there, through all the seasons of my health.

Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.