When You Know It’s Not OK

We like it when our patients are their own advocates, the nurse says to me when I say, I wouldn’t have had this testing done if I hadn’t requested an appointment. There were no red flags except I KNEW I needed follow-up with my cardiologist when my blood pressure inched up. No one told me to do this! I was pissed already, but grateful that I had listened to my inner voice.

I hate giving bad news, she says as I cry on the phone, stunned, in shock. I suddenly feel like I need to comfort her, overly nice person that I am. I think much later, when did this become about her!

I google while she’s on the phone, not letting her hang up until I try to understand. I don’t understand. I calm myself. She says, the doctor wants you to start a statin. We’ll check you again in three months.

I wait. And wait. I wait for the report to hit the portal. It’s a few hours that seem like forever.

My calcium score. What I had anticipated would be ZERO is 3334.5 Yes, that’s three thousand, not three hundred. You read it right. Action needed when the score hits ONE HUNDRED.

Code YELLOW, whatever that is. I’m still stunned. 100th percentile. This is not good.

Report reads: Patient is advised to aggressively engage in risk factor modification. Clinical follow-up is recommended.

Risk factors to eliminate: The cigarettes I don’t smoke. The couch that doesn’t get company because I exercise EVERY DAY. The blood sugar that is normal. The cholesterol that is barely above 200. The five pounds I’ve always needed to lose, except when it’s 10 and I lose five. The wine I don’t drink. The blood pressure that’s controlled.

I’ve got it! Take the statin and clinical follow-up! More tests! YES! Information is KEY. What is really happening? Of course, we need more information.

I take a Xanax I had forgotten is in my medicine cabinet and go to bed at 7 PM.

Next morning, on the phone for an appointment with my cardiologist. Receptionist is looking. I wait. Eight minutes while she looks and apologizes. Nothing for months. Not with any provider. Nothing. I ask, Can I be placed on a waiting list? She responds, We don’t have one, you just have to call back. Snarky me says, Well, I guess we’re going to become good friends because you’ll be hearing from me every day!

I muddle through the week. My stepson is visiting. A good distraction. I facilitate a weekend workshop. Ditto. I can’t stay distracted. I google and look for good information. Cleveland Clinic, Johns Hopkins, and the like. No sites trying to sell me their diet or book.

I formulate a plan.

Fast forward one week. I see my GI doc. We have a 20 year relationship. He saw me through TWO treatments for hepatitis C. The first one in 2011 was hell and didn’t take. The second one, the miracle of mRNA, cured me. I still have risk factors for liver disease. We are on hugging terms.

He has a real desk. No, I’m not kidding. I love it. Solid wood. We each take our sides. We talk kids first, spouses next.

My turn. Do you have a good cardiologist? I ask. Yes, he says, he’s great! I toss my test results across his ample desk. He looks at the carotid ultrasound. Sets it aside dismissively. He takes up my cardiac calcium report and says, Holy fuck, and immediately texts his cardiologist while he listens to my story, incredulous that I was treated in such a cavalier manner. By the time I left the office, a nice long visit, I had an appointment scheduled next door less than 24 hours later.

I’m in the process of having aggressive testing and treatment of all parts relating to my cardiovascular system. I have confidence in my team. There is a plan in place with lots of moving parts, but they are on it. I’m on it. I just had a call while typing this, following up on the latest blood work. All is well in my world because I am my own advocate and I don’t suffer being dismissed when it comes to my wellbeing.

When it doesn’t feel right, it isn’t. When you know there’s more that needs to be discovered, there is. Trust yourself. Your head, heart, and gut. Let go of any idea that someone will judge you. That’s about them, not you. They’ve got thousands of patients, you’re the only you you’ve got. Dig in, hunker down, don’t give up. Knowledge is power. And never forget that you’re worth it.

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6 Responses to When You Know It’s Not OK

  1. Amanda St Pierre says:

    I am so glad you are your own advocate… be well… my thoughts are with you.

    Amanda St Pierre

    Pleasant Valley Farms

    Office:  802-848-7446

    Fax:  802-848-9919

    CONFIDENTIALITY NOTICE: This e-mail transmission may contain confidential information. This information is solely for the use of the individual(s) or entity to whom or which it was intended. If not an intended recipient, any review, copying, printing, disclosure, distribution or any other use is strictly prohibited. If you have received this email in error, please immediately notify the sender by reply e-mail. Please delete this e-mail from your files if you are not the intended recipient. Thank you.

  2. Holy crap. What a scare and thank goodness you persisted. Hope it all turns out ok.

  3. Lorraine says:

    Love you to the moon and back. Thank you for sharing these very challenging times. Many lessons learned here. Of course wishing you the best of health. Whatever it takes to get there

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