Patient Advocates - The Flour In The Cake

As my Mom continues to suffer the side effects of a fluoroquinolone drug, I am more convinced than ever of the importance of patient advocates, especially for the elderly. Mom has Lymphoma, the bad kind, but her symptoms today - confusion, anxiety, and disorientation are not related to her underlying disease or her age. I know the symptoms all to well, the nasty side effects of fluoroquinolones, as I too was “floxed“.

Mom has always been independent and competent, making her own medical, financial, and life decisions. Today she is scared, needs someone to help her navigate through this broken medical system and make decisions for her. I can vividly remember feeling the same way when I was “floxed” years ago. Although it took me more than a year to recover, I had youth in my favor and was not suffering from cancer.

Yesterday was mom’s scheduled treatment day. The doctor decided she was too run down to risk receiving treatment. I keep wondering if it’s not the Avelox preventing her from receiving the treatment she needs. I can’t tell you how anxious I was to get at those doctors and hear their justification for prescribing a restricted, last-resort antibiotic, contraindicated for the elderly, and intended for treatment of confirmed bacterial infections that have not responded to other treatment. THIS is the drug they gave my mom for her cold symptoms.

The nurse chose to argue with me, but I would have none of it. I INSISTED that Mom’s records instruct that she is NEVER to be prescribed any fluoroquinolones. The nurse asked, “How about Cipro (another fluoroquinilone)?” I’m like, “What part of NO fluoroquinolones do you not understand!?” She continued to try and sell me on fluoroquinolones, when the doctor came in. Lucky for him, he agreed with me, and Mom’s records now show that she has an allergy to fluoroquinolones.

Patient advocacy has gone from being the frosting on the medical care cake to being a necessary ingredient in any recipe for medical care that does more harm than good. Patients have to be informed, but all the information in the world still doesn’t help if you (or your advocate) doesn’t have the tenacity to insist that your views, concerns, and wishes be acknowledged, with or without the MD behind your name. This is especially critical for the elderly, who often do not have the resilience to recover from medical mistakes or sloppy drug-pushing.

What has happened to our medical system? Once upon a time, there was a deep bond of trust between doctors and patients, back when we didn’t need to be a walking pharmaceutical encyclopedia to understand our medical care. What if we didn’t have the internet? Would we (the patients and patient advocates) be better or worse off? How do you think your doctor would answer that question? Are you willing to rely on information that you receive from your doctor, or do you feel the need to research and direct your own care?

Susan Beausang,

LymphomaInfo Social