Treating PH Like the Bully It Is

Since my son Cullen’s diagnosis in 2008, I have imagined pulmonary hypertension (PH) as a toxic person rather than a disease.

Like the Grim Reaper, PH is an intimidating figure that wears a hood covering its face with looming darkness. The image never reacts or responds, but provides a target where I mentally direct my anger, blame, resentment, frustrations, and sadness.

If you are a patient or a caregiver, how often have you expressed how much you hate PH? How many times have you begged it for a chance to breathe? Don’t you feel like reaching into the shadows and shaking PH like a rag doll?

PH is a bully that relentlessly sits on its victim’s chest and squeezes the air out of the lungs, stressing hearts to the point of exhaustion. It dresses up like asthma or panic attacks to avoid identification. Or even worse, it convinces others that the pain is in the patient’s mind and nothing is wrong.

When finally exposed, PH remains ruthless, ready to battle and maintain control. Patients, caregivers, doctors, and nurses gather for interventions. Treatments often help ease PH aggression. Procedures like a Potts shunt can place PH in a sort of timeout by improving pulmonary blood flow and cyanosis.

But PH will stop at nothing to bring you down. It’s a sneaky thief maneuvering around the booby traps intended to keep it subdued.

Throughout this tumultuous relationship, PH haters gather to gossip and scheme about how to deal with the archenemy. They share war stories, shed tears, and note and celebrate progress. Many of us dealing with PH stay in touch through online support groups like the Pulmonary Hypertension News Forums.

An idiom suggests that you should keep your friends close, but your enemies closer. Another claims that the best way to handle a bully is to ignore them. In the forums, we help one another find a balance between the two.

There is strength in numbers. Knowing that you are not facing PH alone helps foster the courage to keep a close eye on the enemy and the determination to keep fighting it. But we also remind one another that it’s possible to find moments in life when we can shrug off PH and focus instead on the places, people, activities, and things that make us happy.

Don’t let PH be that unwanted guest keeping you from enjoying holidays and celebrations. Try to step away from its emotional grasp and embrace the joy of being among family and friends.

If you’re convinced you have lost everything to PH, prove it wrong. Get lost in a hobby, craft, movie, or a book. Snuggle or play with a pet. Call a friend and share a laugh. Lose yourself to nature, even if it’s just stepping outside, closing your eyes, and distracting your senses from the pain and discomfort PH is causing.

Rest is one of your best defenses against PH. Pushing yourself past your capabilities feeds PH’s power, but rest gives you power over it.

Thinking of PH as a person might sound crazy until you consider how it influences your life, how you mentally manage it, and how you explain its presence to others.

My son’s heart and double-lung transplant has physically cut PH out of our lives, but the traumatic memories remain. I will always hate PH for what it has done to my son, our family, and to others. Every time it takes the life of another person, PH transforms from bully to murderer in my mind.

I want PH sentenced and put to death. I want a cure!

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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.