Not communicating your medical condition could be life threatening

I read the following abstract the other day and it immediately raised a flag. Several times in my association with the Kennedy’s Disease Association (KDA) I heard stories about complications resulting from a doctor or surgeon not knowing the patient has Kennedy’s Disease or an anesthesiologist not being aware of the problems that might be caused by using the wrong anesthesia with a person with a neurodegenerative disorder.

Complications After Cardiovascular Surgery in a Case of Undiagnosed Spinal-Bulbar Muscular Atrophy (Kennedy Disease)

• Stacey A. Skoretz, MSc,
• May-Sann Yee, MD, FRCPC and
• Rosemary Martino, MA, MSc, PhD

Abstract
Neurodegenerative diseases are often associated with life-threatening declines in respiratory and swallowing mechanisms. We report the case of a 70-year-old man who had postoperative dysphagia and respiratory failure that required reintubation after coronary artery bypass surgery. Impairment of the patient’s speech, swallowing, and respiratory mechanisms identified during postoperative clinical and instrumental examinations was suggestive of a neurodegenerative disease. Genetic testing confirmed a diagnosis of spinal-bulbar muscular atrophy (Kennedy disease). This case report aims to highlight increased morbidity in patients with undiagnosed neuromuscular disorders in the critical care setting and the benefits of vigilant postoperative monitoring and multidisciplinary involvement throughout the care of complex patients.

Over the last three years I have written several articles explaining the need to carry with you a medical information card and to be your own medical advocate (spokesperson). You also need someone that can be an advocate for you in case you are unable to express your feelings. Two of these articles are shown below and I encourage you to read them.

In the article I called, “When in Doubt Ask for a Second Opinion,” I mentioned: “I believe it is important that we become caretakers of our own health. We need to keep detailed records of doctor's visits, test results, medical history, etc. We also need to understand that we have an opinion and a voice in any diagnosis and treatment recommended. Yes, the doctor is the professional, but it is our body and health. When there is any doubt, just say "time out."

In another article titled, “Be Prepared – Preparation is the Key,” I mentioned carrying a medical identification card in your wallet and a medical information form in your car. I also encourage having the same form kept in your medical file at your doctor’s office.

Another article discusses Emergency Room Procedures. Medical I.D. bracelets are also helpful. Having an I.C.E. (In Case of Emergency) telephone number in your cell phone’s address book is also a good idea.

They key message to take away from this article is that there might come a time when you are unable to advise your surgeon of your medical condition, allergies, etc. Being prepared ahead of time with several backup options could save your life.