Speaking up for a loved one with PH is one way to ‘stand in the gap’

Caregivers and doctors often spot subtle changes a patient may not bring up

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by Karen Schultz |

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“Every one of us gets through the tough times because somebody is there, standing in the gap to close it for us.” — Oprah Winfrey

It has often struck me how fortunate my husband, Tim, and I have been that the same physician has cared for him for over 20 years. It is similar to when a parent sees an adult child after a month or two and notices something just a little different in their demeanor, body clues, or attitude. It’s something only someone who is familiar with them would notice.

The same can be said for the physicians who spend their days taking care of patients with pulmonary hypertension. Noticing a little swelling, weight gain, a different demeanor, or a different way a patient may be adhering to their treatment regimen is an important trait for a provider caring for a pulmonary hypertension patient. Recognizing the subtleties can make a difference when a patient forgets something or is unwilling to report a new development.

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For caregivers, it becomes second nature to be familiar with every aspect of how a person breathes, coughs, tolerates activities, or is motivated. This can tip off a caregiver to something that might not be quite right with their loved one’s disease. These observations are a unique way that caregivers can advocate for their loved ones.

For example, Tim enjoys any type of historical reenactment or sightseeing activity. Cannons being fired at Old Fort Jackson in Savannah, Georgia, was a must-see on a recent trip Tim and I took. Something would have to be off for him to miss out on that, and I would realize it immediately. (Unfortunately, I had no such luck on this trip, as I would much rather enjoy Savannah’s shopping and beaches than its history.)

My husband recently acknowledged that speaking up can feel like complaining. He has said that he dislikes the gripes and complaints he often hears while spending the day at the pulmonary clinic, and it can be tempting to say that everything is “just fine” when it’s not.

Sometimes it isn’t fun being the one reporting another person’s symptoms, or the wife who describes what is really happening when Tim casually leaves out information at appointments. But it’s important, because on several occasions, I was able to prevent caregivers from flushing and drawing blood from Tim’s central line, which is a normal practice unless there is a continuous infusion. Speaking up possibly prevented an adverse event for Tim in those instances.

These examples are some of the many ways that pulmonary hypertension care is a team effort.

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.


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