Friday, January 27, 2012

Blog post you should read: Internet mistakes to avoid (WEGO Health)

New patients should read this, seasoned patients should add comments to it.....valuable points

Mistakes Patients Should Avoid When First Taking to the Web

"Yes, information is the very first step toward empowerment – but (and this is a significant but) – these searches and health info sites can easily overwhelm you. Before you know it you’re scaring yourself into thinking of the worst. You’re hearing about symptoms, outcomes, and other frightening things all at once. Instead of overwhelming yourself, pause, and consider asking someone you trust to look for you (or alongside you). And, instead of just looking for articles and hard facts – seek out patient communities. The narrative piece and community piece are going to give you solace and honesty along with the facts. Look for patient leaders and community members who can humanize the black and white and fill in where your care team may have left off."

1 comment:

  1. Throughout my life I always trusted & did what ever the doctors told me to. But then somewhere through the years as I got older I started being more of an active participant in my own care. Perhaps it was because I had been through so much that I knew I knew my body better than the doctors & that this was actually an advantage or just because I knew doctors could make mistakes & it is important for me to be on top of what is going on just so that I am not clueless. As it is I have saved my life by taking an active part of my care. What is mean is that when my kidney transplant wasn't working right away I wanted to know why & they said ATN. I didn't know what that was but because the hospital I was at had the internet once I was well enough to walk around (I had lots of fluid on my body so I had to do dialysis again) I realized it meant Acute Tubular Necrosis. I also learned that it could take 6 weeks for the kidney to work. This helped me to not be in the dark but to actually be apart of the medical team. When they said they were sorry but the kidney isn't working & it was at the 6 week mark I told them not to give up before I have. It started working in the 7th week. If I didn't do the research I would have been in the dark & would have just went by what they said & told everyone the kidney didn't work. I am now in my 4th year of having been off of the dialysis machine with this kidney that supposedly wasn't going to work. That wasn't the only time I took my care into my own h&s but it was the easiest to understand example I figure. Another example was when I was admitted to the local hospital in severe pain & they couldn't find what was wrong with me. After 3 misdiagnosis they decided it was all my imagination or that I just wanted attention or pain pills or something & the nurses ignored me buzzing them to check my temperature & give me Tylenol to bring it down. I told the doctor that I could take better care of myself at home & was discharged. When I came home I called my transplant hospital (not local as my city doesn't do transplants) & was admitted there. They saw how much pain I was in & did the same tests but their imaging equipment must be better because they could see I had 3 abdominal abscesses & they said if I would have stayed in my local hospital I would have died. & just recently when it came to me waking up with partial facial paralysis I researched online & realized it was most likely Bell's Palsy. Now I didn't diagnose myself as I am not a doctor but I wanted to be in the know to know what questions to ask. Such as should I be put on anti-viral & what about possible causes such as tumour especially with me being immunosuppressed. The doctor didn't do any scans or put me on any anti-viral medication but did put me on Prednisone to bring down the inflammation. I did what he told me to because he is the doctor. Still I was in the know because of my own research.

    Now I think that is where the difference is. People who research online sometimes think they have symptoms they do not have or tell the doctor what they think before the doctor even has a chance to decide based on his experience. Why see a doctor if we already have decided? the internet does NOT replace a doctor. Research is good to become in the know & be apart of your care to know what questions to ask but that doesn't mean it should make up your mind as to what is wrong. I generally stand back & put in my input & ask questions but let the doctors do their job. After all it is their job. But being on top of things I know what questions to ask which sometimes they didn't even think about but are really good questions.