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Patient advocates / The Why and Wherefore of patient advocacy

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We all must become a patient advocate when a family member is undergoing treatment for serious illness. There are times when you have to be your own advocate, and perform the due diligence needed to receive the best treatment possible. Physicians have a lot on their plate and out of necessity often rely on a standardized treatment regimen for their patients. However, these treatments may not be suitable for everyone; there are many factors that may influence the desired outcome.

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Doctor’s patient load, paperwork, and many other tasks pull them in opposite directions and puts undue pressure on them throughout their long days. It is our responsibility to get their attention so they can address our underlying concerns. It’s important that you feel comfortable with your course of treatment and the only one that can help you with that is your physician.

The internet allows patients to explore their disease up front and personal. You can read the latest research articles, search for unique factors that may affect your treatment, explore medications and their side effects, and so much more. Prior to the early 1990s you had to visit a library, search their card catalog, and hopefully find something current and relevant to your condition. We as layman may not understand all of the medical terms and intricacies our research uncovers but it does provide a basis for discussion with our medical providers that can influence treatment. Plus, the more research you do, the more you learn about the condition.

I’ve done this throughout life much to the chagrin of some physicians and others that welcomed and at least considered my perspective. Some are hesitant to possibly aggravate their doctor, and simply continue with treatment they feel uncomfortable with.

My wife was diagnosed with glaucoma 25 years ago and has had many procedures and surgeries since. Her first doctor couldn’t control her intraocular pressure (IOP) and transferred her to an associate!

The second doctor performed several laser treatments but had inadequate diagnostic equipment to evaluate her condition. He suggested she may have macular degeneration onset, and often recommended aggressive surgeries. I researched alternative glaucoma treatments online and discovered that a less invasive Selective Laser Trabeculoplasty [3] (SLT) laser procedure was available. Her current doctor couldn’t perform the procedure and Mary found Doctor Joel Schuman, the director of the UPMC Eye Center in Pittsburgh at the time, to take over her care.

Doctor Schuman performed several laser procedures including the SLT and successfully treated her condition for many years. He was instrumental in the development of the Optical Coherence Tomography (OCT) which provides a three-dimensional retinal image and used this diagnostic tool to determine that the macular degeneration noted previously was actually a birth defect.

There are issues that mask medical conditions and make them appear worse. For example, many have white coat hypertension. Whenever they go near a doctor, their blood pressure goes through the roof. This can also increase IOP and dramatically increases blood pressure readings at the doctor’s office. If you have this condition, take your blood pressure at home and keep a record for your physician. Otherwise, if the doctor diagnoses you with high blood pressure, they may prescribe drugs that could do more harm than good. Some with this condition will experience blood pressure readings up to the 180s and higher over 100 in the doctor’s office! It’s transitory but does mask symptoms. Doctors should be advised of this anomaly when they are treating someone with this condition.

Second opinions matter. In my mid 40s I was diagnosed with Atrial Fibrillation (AFib). I can physically feel the erratic heart rhythm when it occurs and the episodes can last several hours. A cardiologist prescribed a Holter Monitor to observe my heart rate at home and sent reports via telephone after attacks. They requested I come in after an extended attack and prescribed Coumadin, a blood thinner, and other caustic heart medications.

After researching the subject, and before taking the medications, I scheduled an appointment with an electrophysiologist. He determined that I had paroxysmal atrial fibrillation (AFib) with symptoms that come and go, usually lasting for a few minutes to hours. He suggested that I didn’t need these medications unless the attacks lasted for extended periods, 8 hours or longer. Had I listened to the first doctor I would have been on these caustic drugs for the past 28 years! I control the attacks with Magnesium Glycinate and take 50 mg twice a day and an additional 100 mg during severe attacks. They typically resolve the issue in 15 minutes to an hour. I use the Kardia home EKG monitor [4] and my Apple series 5 watch [4] to take EKGs when my AFib flares up and provide readouts to my doctors.

If you have concerns about your treatment, reservations about your medications or prognosis, discuss them with your physician or seek a second opinion if necessary. Research your condition on line and most importantly, write down any questions you may have so you won’t miss anything during your next visit. When you are the patient, it helps to have an advocate with you that can listen to the doctor, ask questions, take notes, and help to clarify and explain what transpired when you return home.

 

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Disclaimer: The information provided may not cover all aspect of unique or special circumstances, federal regulations, medical procedures, and benefit information are subject to change. To ensure the accuracy of this information, contact relevant parties for assistance including OPM’s retirement center. Over time, various dynamic economic factors relied upon as a basis for this article may change. The advice and strategies contained herein may not be suitable for your situation and this service is not affiliated with OPM or any federal entity. You should consult with a financial, medical or human resource professional where appropriate. Neither the publisher or author shall be liable for any loss or any other commercial damages, including but not limited to special, incidental, consequential, or other damages.

Last 5 posts by Dennis Damp