Tuesday, April 20, 2010

What Friends Do

I know I've been MIA again, and it wasn't that long ago that I promised not to do that. Sorry. Mostly I've been busy just trying to cope day-to-day and do my best for my family. There haven't been any new developments to mention, although the next couple months will have me making my rounds of doctors here again. It's funny the way they periodically end up grouped together even though each doctor wants me checking in on different schedules.

I was reading an article on the LA Times website about the many ways people tell friends and family (or keep them updated) on bad news, such as health problems or deaths. I found it interesting that the degree of closeness between the person and her friends and relatives affected how the recipients felt about learning bad news electronically. It makes sense that people don't like to hear bad news from someone they feel close to via email, blogs or Facebook, and yet as the one who has shared bad news that way, I understand why people do that. 

But that's not why I poked my head in today. In that article, there's a website called What Friends Do that I'd never heard of. 

There are many sites out there that are specifically intended to help people dealing with a serious health problem (such as cancer, a premature baby, etc.) keep friends and family updates. They include CaringBridge and CarePages, both of which close friends of ours have used to keep their wide circles of support updated. 

But WhatFriendsDo.com does something I haven't seen before. It's a place to organize a meal train, visits, concrete ways to help a family dealing with a health crisis. I love the way the site gives suggestions for the random acts of kindness you can do to help someone out. They give every day a different theme for ideas of what to do, and also offer other ideas that might be more appealing or appropriate for a specific situation. They also offer suggestions of things to say, and advice for helping people who haven't been through a similar situation understand why, for instance, the friend in need that they want to help out isn't calling to ask them to do a specific task when they said, "Call if there's anything we can do to help."

And I love their motto: "We may not be able to change the outcome, but we hope to change the journey." 

Check it out, and keep it in mind next time someone close to you is in crisis. Or the next time someone asks you what they can do to help you out, this could be a great place to point them.

Thursday, April 1, 2010

No News Turns Out To Be Good News, Mostly

In some ways, I totally understand why it takes so long to hear test results when they turn out to be non-serious. And in the vast majority of cases, not hearing back means everything was normal or OK. 

But then there's teensy minority of cases where patients fall through the cracks and, for example, never hear that a PAP smear was abnormal and needed following up on. And it's that tiny minority that I always worry a little bit about falling into.

So why can't someone in every doctor's office take 30 seconds to call and leave a message (or tell me directly) that everything looked fine and I'll get a proper explanation in a letter? Or drop me an email that doesn't have my HIPPA protected info on it but at least gives me a more immediate all's-clear?

I finally broke down and called the neurosurgeon's office today to find out what the CT showed last week. The tech had told me the neurosurgeon would have the results by Monday, and I figured that if my head was going to explode, I'd have heard something fairly early in the day. (Heck, if it's really bad, they don't even let you leave the hospital.)

Sure enough, it seems like my brain has yet another thing that they will have to watch over time, but isn't currently anything to worry or do anything about. 
I'm going to get a report in the mail, someday, and I'll share it then. But the medical assistant read a small piece of the neurosurgeon's dictation to me that said it wasn't actually an aneurysm but an "infundibulum" on the "posterior communicating artery." (The MA actually had to spell the word "infundibulum" for me since she couldn't figure out how to say it. I can't either.) 

From what I can find on the Web, it essentially means that there's a widened spot on the internal carotid artery. Apparently sometimes they grow bigger and can become an aneurysm, but it's not one right now. 

Not really sure how often it will need to be checked on. Since I seem to be getting brain MRIs about annually anyway, I'm not sure it will require doing anything all that special. 

I'll let y'all know what, if anything, is different when I get the actual letter from the neurosurgeon. And/or after I talk to my internist, who I see in a couple weeks.