The Shocking News When a Patient Dies in your CommunityDate:18 May 2017
This week it became apparent that my daughter's disease community was in big trouble.
I could see it on a personal level, when my daughter, who is a leader in her community ended up in the hospital two times in a week to help manage uncontrollable pain. The first time the emergency room doctors wanted to admit her, but her concierge doctor wanted her to go to her pain management doctor to deal with it. The second time was after trigger point injections went haywire and she was left writhing in pain. That's when she was admitted, given diuladid after six hours of pure misery, kept overnight to rest, and told to go back to the pain doctor for a patch, which is not yet approved by her insurance. The pain level for my daughter? From 1-10? 25.
And then I started seeing the posts.
Moms on Facebook letting us know that their daughters had died.
Stage 4 cancer, undetected because doctors only looked at the rare disease and not anything else. 3 days left to live.
Heart attacks, because POTS patients are not taken seriously .
Suicide from a beautiful young girl that had a psychotic break and could never recover fully. The pain was too much to bare.
My daughter said to me when she was fourteen, I would kill myself, but I don't want to leave you.
I have always kept that close to my heart. I know that her disease is ravaging her on every level. She is an incredibly amazing woman. I watch our community of mothers and daughters, and these girls are mostly type A, brought down by an unknown cause, left to plead their case and beg for relief.
As a mother, I carry my daughter's pain with me everyday. It hovers over me, and effects every decision I make. I want you to know, that if you are a doctor, and you treat a patient badly, because you are too jaded to think outside of the box, or to listen to what is being said to you, you should retire. No excuses. You are an affront to all of us who know that there is more to this visit, and your apathy hurts my child like an arrow in her already bruised and battered heart.
And that is what I am thinking about today....