Strong Advocacy Leads to Answers
I’m going to say it, even if it sounds like boasting: I worked hard to get Linda a new cardiologist once I realized that her old one was skipping standards of care with stroke diagnosis.
The new cardiologist immediately ordered extended heart monitoring for Linda to determine if she had a come-and-go atrial fibrillation (paroxysmal A-fib) that might be leading to her mini-strokes (TIAs). Within the first thirty days of that monitoring, they discovered that she not only had paroxysmal A-fib, her heart was stopping at various points. One pause was eleven seconds long! Suddenly, other instances of her needing to sit down or falling down for no apparent reason could be explained. So in thirty days her new cardiologist solved the problem her old cardiologist shrugged his shoulders at for three years.
She could’ve avoided two TIAs if he’d followed standard of care protocols on her case. She could’ve avoided two very disappointing and expensive visits to vascular neurologists and a multi-day hospital stay. Her substandard care cost her — her health, her money, and importantly, her trust in doctors.
The good news is, she now has good care. She has a pacemaker, so won’t have pauses or a heart rate so low that her organs and brains aren’t getting enough oxygen. She has a new medication that decreases her chances of another stroke by 50-70%, and she has a plan to get a Watchman, a device implanted in the heart that prevents A-fib clots without anti-coagulation (it’s own risk, especially for an IBM patient who may have falls). It’s a real win!
How I Advocated
Advocating for a loved one means working two angles at once: supporting the patient through the process, and pushing back on the medical system when needed. Let's start with the patient side, because sometimes that's the harder conversation.
Sometimes the first advocacy job is just helping your loved one take their own experience seriously. (See my previous post about this.) Linda had a chronically low heart rate for years. She wasn't worried — before her IBM diagnosis, she'd been a regular at the gym, and she'd internalized the idea that athletes just run low. I half-accepted this for a while, but it nagged at me. When she developed depression, I looked into her medications and found Bystolic on her list. Bystolic is a beta blocker, and beta blockers are well known to cause both bradycardia (low heart rate) and depression. I contacted her doctor's office and advocated for a dose reduction. They agreed, and her depression lifted — but her heart rate stayed stubbornly low.
That's one thing I'd encourage any caregiver or patient to do: know your medications. Look up their side effects. Doctors manage a lot of patients and don't always connect the dots between a drug they prescribed and a symptom you're experiencing. You're allowed to ask questions, request adjustments, and push back. Good resources are: Drugs.com, Medscape, and FDA. Your pharmacist is a wonderful resource as well.
The heart rate issue stayed in the background while something more urgent moved to the front: Linda had a second TIA, and nobody was trying very hard to find out why. I started pushing for extended heart monitoring. I went with Linda to a cardiology appointment and raised the idea of consulting a vascular neurologist to help determine the cause of her strokes. Her cardiologist actually discouraged this, suggesting it was his area of expertise. I want to be generous here and assume he believed that — but a doctor discouraging a patient from seeking specialist input is a flag worth noticing.
Around the same time, I dug into her existing records and found something called a Left Bundle Branch Block (LBBB) on her EKG. Her cardiologist had noted it as "not worked up" — and then never worked it up. LBBB is a known risk factor that makes atrial fibrillation more likely. She also had a history of unexplained falls and episodes where she needed to suddenly sit down. These things were not being connected or investigated.
So I started looking for a new cardiologist.
How did I know what questions to ask and what standards to hold her care to?
I used AI (mostly Claude, but also ChatGPT) as a research tool — specifically to understand standards of care around stroke and cardiology. If you're not comfortable with AI, an Internet search on "standard of care for [condition]" works too. (Additionally, AI can be wrong, so always double check the info it gives you. It’s a great place to start to get an idea of where to look next.)
Medical societies like the American Heart Association publish guidelines that are publicly accessible. The key question to ask yourself is: is my doctor actively trying to find the cause of this problem? Some things, like IBM itself, don't have a neat causal explanation. But most symptoms do have causes that can be identified and treated. Don't accidentally accept perpetual mystery around something that doesn't have to be mysterious.
The new cardiologist ordered extended heart monitoring immediately. Within thirty days, he had answers that three years hadn't produced. (You read the intro — you know how that turned out.)
A few more things I'd add from this experience:
Don't minimize symptoms. You are not a hypochondriac or a whiner for surfacing things. If something doesn't feel urgent, keep a running list and bring it to your check-in/next appointment. Get symptoms documented in the chart. A symptom in the chart creates a record and an obligation to address it.
Check your discharge paperwork. What's written there doesn't always match what you were told verbally. Pay particular attention to the medications section. It's not okay for a doctor to add or continue medications without doing a full workup first — that's their job.
Ask about all your options. Doctors don't always present the full menu, particularly when less invasive or less expensive options exist. It's fair to ask, "What are all the approaches here, including more conservative ones?"
And finally: you are allowed to fire a doctor. Even one you like personally. Personality and competence are different things, and you deserve both.
Linda is now in good hands with her new cardiologist, and with a pacemaker installed, she has added an electrophysiologist to her team as well. It can feel overwhelming to have a growing roster of specialists, but the right experts putting their focused knowledge to work for your loved one is a win, not a burden.
Linda could have avoided two TIAs, unnecessary hospital stays, and years of unanswered questions if the red flags had been caught earlier. That's what's at stake — and that's why the effort of advocating is worth it, even when it's uncomfortable, even when you're not sure you're right, and even when it means letting go of a doctor you've had for years.
So advocate. Trust your instincts. Do the research. Build the right team. And if you have a story about advocating for yourself or someone you love, share it in the comments — this community is stronger when we learn from each other.
“All we have to decide is what to do with the time that is given us.”
— J. R. R. Tolkien
We have a bookshop store HERE where you can find books Linda has read, or that look helpful for folks dealing with chronic diseases of various kinds.
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
