Fwd: NYTimes: Rude Doctors, Rude Nurses, Rude Patients
blatino at RELIABILITY.COM
Wed Apr 19 10:39:25 UTC 2017
A family member of mine luckily has survived childhood leukemia (so far) when detected at the age of 3. She went through 3 years of treatments and I am happy to say she is cancer free. But for the parents of such children, they know that status can be temporary as the leukemia can return. I've learned through their experiences what parents of such children go through with their child's care, and how tightly bonded groups (they refer to them as prayer tribed) develop of like parents with kids in the same position. Below is a FB post of one of these other parents and the frustration they are going through related to getting a straight, accurate and timely Dx. This is just a post from 'the other side', a true picture of what families go through when doctors don't agree. They don't know who to believe and they want to believe the doctor who is telling them the news they 'want to hear'. Just an FYI as I find this relevant to our conversations on this forum.
"Savannah is a beautiful 7 year old girl who fought leukemia once before as a 2 y/o toddler and is now back in the battle.
Savannah is out from her BMA and LP. She did wonderful of course. We will not have results for 24-48 hours. I need to hit the pause button. I am so confused and frustrated. Two days ago not one but two oncologists said she had cancer. Two more on top of that said the same. Now down on the BMA room a different oncologist said there is still a chance she has some bad infection.
Why can't anyone get on the same page? I don't even know who to believe at this point. For almost SIX months I have known something is wrong. I've had her to an ER and was told her back pain was from scoliosis. That the fatigue was from side effects or low iron. That the migraines were from neck alignment issues.
Then we get the CT scan and get an urgent call to come back because it looks to be an infection in her brain and abscess behind her eye and that we would be admitted. Then we get to Seattle and were are told there is no abscess or infection. Just fluid.
We get the brain MRI and were taken into a room and told Savannah had cancer they just weren't sure what kind and what treatment should be. FIVE different oncologists have told us that there was no infection or orbital cellulitis. The neurosurgeon told is no infection just fluid. Then today after her procedure the oncologist says there is still a chance this could all be an infection. What!? I don't even know or understand at this point. I feel I have been through three different nightmares. I can't sleep, I can't eat. I feel like I've been punched in the gut. I feel embarrassed. That we alerted our tribe and now this could be something completely different.
I need to hit the pause button and unplug. We should have definite answers within 24-48 hours. I will answer messages and update when we know without a doubt. I truly am sorry.
We are of course holding onto hope that it is not the C word and a treatable infection. These will be the longest hours of my life. I am asking that everyone respect my silence for a couple of days. I am beyond grateful how already we have been given so much love and I promise to pay it forward."
Robert J. Latino, CEO
Reliability Center, Inc.
blatino at reliability.com
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From: David Meyers [mailto:dm0015 at ICLOUD.COM]
Sent: Tuesday, April 18, 2017 6:43 PM
To: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
Subject: [IMPROVEDX] Fwd: NYTimes: Rude Doctors, Rude Nurses, Rude Patients
David L Meyers, MD FACEP
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