Friday, September 6, 2013

Sometimes it is the small things that warms your heart and gets you excited.

I have been working with a new doctor, Dr Thomas Parker Vail,  at another large facility, UCSF, he is the head of Orthopeadic and Reconstructive surgery.

To determine the state of my "end of stem" pain, a condition related to a failure of the stem part of the implant, Dr Vail,  requested I do another metabolic bone scan to see what the bone reabsorption rate (performed by osteoclasts) is compared to the rate of laying down of bone (performed by osteoblasts). If more is being reabsorbed than being laid down that is where there is a problem.

Anyway, the reason why I am sharing this part of the story has more to do with the doctor. He  asked me to send him an email when I was scheduled for the test. It took me 3 months, after I first met with him to finally get the test done, I emailed him to let him know, that was last night; this morning at 6am he sent ME directly an email back, thanking me, and asking his assistant to be on top of it.

Now, that is the exciting part of the story. He followed through on what he said he would do. This is a busy surgeon, chair of his department at a large academic hospital, and he emailed me. That is a WOW. My previous experience with a large academic hospital was horrible...I couldn't email anyone, it took them weeks to get back to me, and the doctor essentially blew me off.

I am sharing this because as a patient, with a chronic, painful, and complicated ortho condition it is such a relief to have a doctor treat you like a human being. Outside of my group of ortho doctors in Vail Colorado (how ironic) the positive patient to doctor experience has been desperately lacking. This doctor did not make me feel bad about myself, he didn't say "suck it up", and he treated me like a professional on the team, which when you come down to it, with any medical condition, especially a chronic one, is so very important. The simple action of being treated like a professional adult telegraphs to a much more positive overall patient experience and makes me very hopeful that I may have found the "ONE", so to speak. It doesn't mean that everything will be perfect, but this is a good start.

I will never, or I will try to never not follow my instincts again, as I had struggled for years with my doctor at Stanford, as was documented and reported last month by Kimberly Leonard from USNews, in, How to be an Empowered Patient. 

I thank her and the marvelous #Epatient Advocate Trisha Torrey, who diligently and wittily authors the's Patient Empowerment site and her own Every Patient's Advocate site among other patient advocacy engagements, for reaching out to me and asking me about my story. Who knew anyone would care about my story?

 It is because of these two ladies that I got inspired to re-engage my more broad patient advocate hat and share some of my stories so that others may not have to go through the same experiences. If my sharing helps even one person, that is one person more that can spend their life living rather than fighting the convoluted Healthcare system in the US.

So, stay tuned for more tips and tricks. And,  a shout out to Trisha Torrey and Kimberly Leonard! 

1 comment:

sasha willson said...

Good post, very well written.
Here's my link back to you

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