Data Independence Day – July 4, 2015

mayday9 years ago, I spent some time over the summer asking for medical records.

I wasn’t asking for my own, I was asking for my daughter’s medical record. You see, she had ‘graduated’ from the NICU but had spent time in 2 hospitals within 1 network – and we were already at our 3rd hospital.

Fortunately, I knew to ask.  Unfortunately, it wasn’t easy.  Thankfully 9 years have passed and I don’t remember all of the details – other than I know I had to show up in person at both hospitals.  I think I had to pay at one, but I don’t think it was that painful (to the pocketbook).  I scanned the pages and created a FYOL document – FYOL = First Year of Life.  It’s 4MB and 122 pages.

The reason I’m fortunate is because having the data myself saved my daughter (we can argue if I saved her quality of life or just her life).  But most doctors would agree recurrent high blood potassium isn’t an ideal situation.  The Story:

 “So when Alexis was celebrating her 100th day in the hospital and her 1 year birthday at the same time, we were assigned a kidney specialist – but ultrasound didn’t show anything but yet we could leave the hospital for 3 weeks because Alexis had elevated potassium levels.  And I thought, hey wait – I have notes from her NICU and ‘step down’ days that show her bloodwork having high potassium too.  I had all of Alexis’ paperwork by then, plotted the data and spelled out in an email to the doctors on her team. Sadly they dismissed me.  But I referred to Dr Google and had the answer, so I emailed the head of the kidney department and said “My daughter has pseudohypoaldosteronism type II.  Who on your staff can see us and confirm the diagnosis and start treating Alexis?”  He emailed back even though he was traveling and validated my observations and recommended a doctor on his team.” [story from my MedX talk in 2013 or the video]

Without being armed with the knowledge of my daughter’s details and being able to share it with her new hospital, we slide6never would have begun easy treatment with extra sodium.

It’s never easy to diagnose pseudohypoaldosteronism type II, and even more impossible without trended data. And when those trends sit as dots in individual hospitals, it will never be a trend. So the diagnosis was done by a Mom – who did have access to all of the data.  But not without hard work to connect the dots. But then again, it’s my own daughter’s life on the line.

Plan and simple:  Liberate the Data.  Data Independence Day!!!

Go to GetMyHealthData.org!

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Posted on 07/04, in Uncategorized. Bookmark the permalink. Leave a comment.

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