Power to the Patient!
This is an exercise in “peer to peer health advice.” I’m asking for advice, from “the DOC” (diabetes online community) – more on that below.
Here’s a message I received from someone who’s really peeved about a technology for managing his Type 2 diabetes. Does your experience match his? Should his digital device match the results from finger sticks? If not, for heaven’s sake why?
[Read more…]
The latest in the occasional series of e‑patient requests, in which someone asks me to post their search for information. No guarantees; sometimes we connect with answers, sometimes not.
I know nothing about the issues – I’m just forwarding the request. Please share on social media and/or forward this to anyone who might have suggestions. On social media, use the hashtag #PedsGI, to tap into that network.
This uterine cancer e-patient had a very bad reaction to a new chemo regimen yesterday and has lost confidence, and wants to learn more before proceeding. What advice do you have on these treatments? Are there good online e-patient communities?
The emails I received:
I went to the Infusion Room and a young RN starting infusing me with preparatory drugs such as Benadryl and steroids before the Taxol and later Carboplatin.
The moment the Taxol starting flowing into my system I had a series of “Oh no!” reactions that indicated a severe hypersensitivity to the drug. A crowd of nurses came on the scene.
This series of requests is usually about finding a good online patient group, but what the heck, why not this?
A heart patient named Chris from Long Island contacted me looking for something I’ve sought myself: a tool for organizing one’s records. I hope everyone who helped me with that last summer will be tolerant of my weak memory if I forget to mention theirs – my needs ended suddenly mid-search and I never got around to finishing the hunt. So here we are. This time we’ll record it in the comments!
Chris has hypertrophic cardiomyopathy, the enlarged heart-muscle condition that Hugo Campos has made famous. He’s never heard of Hugo, nor has he heard of the AliveCor, but he sure shares Hugo’s understandable desire to be responsible for his own well-being! That’s what we call being an empowered, engaged “e-patient.”
Here’s what he sent:
… I have been an advocate for myself insofar as I am able to try and garner information and ‘house’ my medical records for easier, access, transmittal and peace of mind. I fervently believe that this is a requisite portion of partnering with a doctor or medical teams to handle issues and provide solace.
As I had mentioned, I was diagnosed with a cardiac issue and being adopted, I never knew of my medical history. I have looked for years to find websites, apps and e-devices to scan, store, and file my medical history into one accessible hub. I simply cannot find one specific rating system or even helpful links that would provide more than a cursory glance into this technological world.
Here are the tools I know of, in alphabetical order, from past discussions:
Thoughts, all?? I know this field is advancing faster than I’ve been able to pay attention to it. Help!
Next in a series of very informal e-patient request blog posts, which feed the equally informal patient communities page. If you haven’t browsed the series you might find it interesting to see the kind of information people exchange for some conditions … and for others, we got nothing. Welcome to the internet!
This request is from e-patient Brenda Denzler, shown here in (characteristically) two comic settings. She’s seeking help for an issue that’s been with her for her whole life.
The doctor she mentions is Ryan Madanick @RyanMadanickMD, whom I’ve met on the conference circuit (particularly at Mayo social media) and online!
She sent this email. (In a comment I brought up EMDR as a trauma treatment, but I don’t know a lot, and besides, I’d like to hear more about other child medical traumas.)
My gastroenterologist was impressed with my preparation as a patient of his and referred me to your site. I’m not sure what it means to be your “current or potential client” – but am taking a chance by contacting you this way, anyway. [I don’t take “clients.”]
In late 1958 and early 1959, I had two medical situations arise. I was 5 years old. [Read more…]
Latest in the occasional series of e-Patient Requests.
A friend writes (anonymized):
Someone I know was just diagnosed with colon cancer. Yikes.
It seems to have been caught very early (routine colonoscopy, no symptoms) and she is now going through the genetic testing/biopsy/CAT scan stage over the next few weeks.
She asked me if I knew anyone who could tell me who the best drs (colorectal oncologist-surgeons) are in the NYC area. I’d deeply appreciate any advice you can give me for her. Thanks.
I don’t know individual doctors and I don’t know anything about colon cancer, but I know I’ve crossed paths with many of you out there. I realized that my Communities page has information about gut conditions IBD and celiac, but nothing about colon cancer. Help! I need two things:
And let’s add a third:
I’m hesitant to ask for specific recommendations here, because advice from strangers may not be worth much; I know first-hand that in a good community, advice is cross-vetted by a larger number of people. So I’m most interested in that.
If you want to offer the friend specific recommendations, please email me via my Contact page.