Hitting frustrating roadblocks when my symptoms are dismissed

Throughout my 18-year journey with pulmonary hypertension (PH), I’ve unfortunately had many experiences where doctors have brushed off my symptoms.

I was once admitted to an intensive care unit where healthcare providers dismissed my hyponatremia, or low sodium levels, assuming it was simply a side effect of my PH. Incidents like these make me feel like I’ve hit a roadblock in managing my complicated care.

More recently, I’ve been experiencing uncontrolled chest pains, confusion, and other neurological issues, which may be partially related to PH. However, a chest X-ray also showed left lobe atelectasis, which I only discovered when I checked my online patient chart the following day. I believe this should be investigated further, so now I’m awaiting another appointment. Having to advocate for myself is overwhelming and exhausting!

It’s especially frustrating when healthcare professionals trivialize my concerns — particularly when my team later discovers that they were valid and something serious was going on. New symptoms are often blamed on my PH and chronic kidney disease, and thus remain unexplored. Other times, my symptoms are chalked up to vague issues like “the effects of polypharmacy” or “metabolic problems.” To me, these answers indicate that a provider is uncertain about the root cause of my symptoms.

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It’s upsetting when healthcare professionals disregard my persistent concerns, but I recognize I’m not alone in this struggle.

As patients, we must advocate for our health, conduct our own research, and ensure that we receive proper medical attention — whether we have PH or not. It’s important that our providers conduct a thorough examination, investigate any medical issues, and work to pinpoint their cause. We all deserve that.

It’s also crucial that doctors listen carefully to patients, as our description of our health concerns can provide valuable insights. In my experience, it helps to gather information about diet, exercise, lifestyle, current treatments, and other underlying conditions. These data can help uncover potential causes, leading to accurate diagnoses and improved treatment plans.

Grateful for healthcare providers who listen

I want to note that many of my healthcare providers listen to my concerns with open ears and offer support. I appreciate my empathetic team.

The difficulties tend to arise during ER visits or encounters with new doctors. Explaining my medical history and suggesting treatment options to a new provider, especially for issues unrelated to PH, can be tiresome. When a doctor refuses to delve deeper or collaborate with my other providers, it makes me uneasy. I often leave these appointments feeling judged, as if my concerns make me an addict, a hypochondriac, or irrational. Can any of you relate?

Still, I remain optimistic that dedicated, compassionate professionals outweigh the rest.

We all deserve validation and respect

I know my experience isn’t unique, as I’ve heard many others share similar accounts of dismissal or inadequate care. Advocating for myself can be challenging, particularly when I’m grappling with chronic illness and not feeling well. I yearn to have all my concerns addressed, rather than being made to feel that my medical needs are insignificant.

Managing a rare, chronic disease often brings roadblocks like these. I share my experiences to support others and to advocate for future patients. I don’t intend to criticize healthcare providers; they’ve undoubtedly saved my life several times.

I didn’t choose to have a rare disease, and I don’t take pleasure in consulting many specialists to manage my well-being. Regrettably, this is my predicament, but I strive to flourish nonetheless. It’s the least I deserve.

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.