e-Patient Dave

Power to the Patient!

Search Results for: schedule

By 4 Comments

e-Patient request: Recurring bleeding & misery after partial knee replacement

From time to time I post an e-patient request from someone who seeks information or a community of patients with a particular condition.  This one is for a patient who had knee surgery in April, and it hasn’t gone well; current status is “Lots of pain, mood low, can’t walk well at all.” The history:

Patient is 56 years old, athletic male in good health.

Partial knee replacement performed April 12, 2013. Within four weeks he was back in surgery because of bleeding.

They retrofited the appliance June 7, sewed him up and sent him home within a week.

Started bleeding again in 3 weeks; arteriography now scheduled for July 12 w/ radiologist to find bleeding, (possibly). Two options anticipate: rest, wait, heal; and/or, full knee replacement.

Any advice, thoughts, experience?

If you have advice, please reply in comments below.

If for some reason you want to reply privately, see my contact page. And thank you, all.

By 3 Comments

Make it EASY to manage my pillbox!

Blue Button logo

Vote us up! (Alicia Staley and me)
Click to visit our proposal on the site, register if you need to,
and use one of your votes for this awesome idea!

(Or all three of your votes. :-) It’s allowed.)

Have you ever seen the set of pills that have to be managed for a person with a slew of prescriptions?  It’s nuts. What’s even more nuts is that with all we pay for healthcare and computers in this world, there’s no software anywhere that makes it easy to do the right thing. Let’s change that!

(I’m not complex at the moment (at least my prescriptions aren’t), but when I was sick I sure was. Farther down is the true story that gave me this idea.)

This is my submission for the “Blue Button CoDesign Challenge” that was sprung on us last Monday by the good folks at Health & Human Services, who are doing this radically modern thing – unusual for government, eh?  They came up with a fascinating challenge and are opening it to the public, with prizes! For details you can check out the challenge site.

Here’s my proposal. Over the weekend I’ll flesh out this blog post with more details, but for starters Friday afternoon, here’s the big idea:

Build me a Blue Button enabled tool that….

… makes it easy to manage our frickin’ prescriptions and take the right pills at the right time!

My doctors’ computers know my prescriptions and when I’m supposed to take them, right? So do the pharmacies. And computers can mash up all kinds of information from different sources, and organize it, and display it clearly, right? So why do they make ME figure out when I should take what?

Let’s have an app that can read all my prescriptions, and organize them into times of day. Even better, it could print out my pillbox and add pictures of what goes in each square. Why not?? Isn’t that what computers do – make complex information easy??

[Read more…]

By 3 Comments

Wall Street Journal picks up “Gimme My DaM Data” song!

Click to view the story & & the video

I just learned that “The Wall Street,” as cool people call it, reported last Tuesday on a session at the uber-hip South By Southwest conference (SxSW), saying this:

SXSW Reporter’s Notebook:
Who Rules the Data?

The full text requires a subscription, but here’s the relevant snip:

… Privacy is only one data concern. John Wilbanks, chief commons officer at research nonprofit Sage Bionetworks, began a panel on “health 2.0” by playing a song called “Gimme My Damn Data.”

While acknowledging the great possibilities of data for improving science and individual health, Mr. Wilbanks lamented the currently “broken” system where people can’t easily use data about themselves. “It is very hard to open-source your data,” he said. “It is owned by whoever has it—and it might be considered a corporate secret or private.”

The power of art in a cultural revolution:
[Read more…]

By Leave a Comment

Regina’s “Partnership WITH Patients” conference: donate, attend. (I am.)

Cross-posted from e-patients.net today.  I know my subscribers here have been following the growth of this movement; look at this truly extraordinary development, created by one widow with two kids and no foundation funding, and a bunch of peer supporters.

This is a hint of what social media can enable in giving voice to the disenfranchised – in healthcare and everywhere. You can help – support it in a large or small way. Use our ready-to-click links below.:-)

Yes, “Regina” – you know who I mean.:-) You know someone’s a star in the firmament when they gain first-name status. (Especially in healthcare, where “the other Regina” happens to be Surgeon General!)

As we reported here in June, Regina Holliday has led a band of patient colleagues and professional partners in creating this event, hosted by EMR vendor Cerner, to train and develop patients’ skills as effective advocates and related topics.

This is as grass roots as it gets – please support it,
as I am, personally, with time and cash.

Also, SPM is providing the infrastructure
for tax-free donations to support patient travel.

Summary of links below:

[Read more…]

By 9 Comments

A dermatologist responds: “Who the heck is charging $3000 for Mohs first stage?”

Well, that’s not exactly what he said. And I’m not even sure he’s a dermatologist, though it sure sounds like it.

For newcomers, this is the latest in a four month saga, including these posts:

Today (Saturday 6/16) on the “decision” post, commenter “Joe” (apparently a dermatologist) said the most interesting, thought-provoking stuff I’ve ever seen anywhere about basal cell carcinoma treatment options:
[Read more…]

By 20 Comments

Let Patients Help, Cost-Cutting Edition, Part 3: Shopping for my next CT scan

Since November  I’ve been blogging about what happens when a patient tries to help control costs, in my cost cutting edition posts. Most recently I noted that this stuff takes time, especially since our glorious American healthcare system seems to be set up to block our access to what things actually cost … or at very best, we have no channels and pathways to let us find the information.

Well, ladies and gents, I’m fed up.  I have to get on with life.  I’ve been trying to be a responsible, engaged patient, and if the established channels won’t make it easy for me to find out what I need to protect myself, I will blow the whistle, announce what I’ve found so far, and move on. And we’ll take it from there.

I’m leaving tomorrow for 11 days of work in more sane countries – Switzerland and Holland – so I’m going to report the status here.

A caution and apology at the outset: I expect this will be read by some of the people I’ve spoken to at these companies. A lot of the frustrations I express here are because we couldn’t connect. I am grateful for your effort; you’re just too hard to reach, which is a problem if you’re the only one at your company who can help with this kind of work. I will appreciate your continued effort as we work through this change in American healthcare.:)

Later I’ll blog about the results of my research into my basal cell carcinoma. But for today, let’s just look at the simple (you would think) matter of getting an important CT scan.

[Read more…]