I hope EVERYONE in this site reads this article

[NoExcuses]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/fact/content/?041206fa_fact
">http://www.newyorker.com/fact/content/?041206fa_fact
</a>

Incredible article. Please read from start to finish.

 

[EnergyGal]

This is an excellent article. Jeanne from our site and Marty from Electromed sent this to me a few weeks ago.

 

[IG]

holy crap this is an olllllllllllllllllllld article.
As in I (and I'm sure several others) have already posted this link several times on this site old.

First time being in 04 and the last time by me on 07/28/2006.
If you're interested in the article you should really really read <a target=_blank class=ftalternatingbarlinklarge href="http://dimer.tamu.edu/simplog/archive.php?blogid=3&pid=839
">http://dimer.tamu.edu/simplog/....php?blogid=3&pid=839
</a>It definitely makes you see the article in a different light.

Just thought you should know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kayleesgrandma]

Amy, I just read this and am making a copy for our CF clinic. Wonder how it would rate?! Thank you.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ImmortalGoddezz</b></i>



If you're interested in the article you should really really read <a target=_blank class=ftalternatingbarlinklarge href="http://dimer.tamu.edu/simplog/archive.php?blogid=3&pid=839
">http://dimer.tamu.edu/simplog/...logid=3&pid=839
</a>
It definitely makes you see the article in a different light.
</end quote></div>

i still agree with the original article.

simply for the fact that Warwick is innovative and innovative treatments such as a new Vest system or agressive antibiotic therapy will lead to longer lifespans.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kayleesgrandma</b></i>

Amy, I just read this and am making a copy for our CF clinic. Wonder how it would rate?! Thank you.</end quote></div>

My clinic isn't ranked very high - and they were candid with me about that fact.

A lot of it has to do with weight. In LA, it's very fashionable to be skinny. CF patients like the way that they look. Weight is a part of the ratings (BMI) and it can effect lung function as well.

They also told me they weren't doing glucose tolerance tests annually on everybody like the CFF recommends. This affected their rating. But now they're doing them annually.

I love my doc and I think my CF team is great. And I think they're wonderful for being candid with me about how they rank and what goes into their rankings.

I think this information can only help CF care providers, patients, and family members obtain better care for CF patients.

 

[Scarlett81]

I'm glad you posted it b/c I've only been on this site less than a year and I hadn't read that article yet.

I personally found it fascinating.

I also read the link to the other article challenging the first one. There's always another side to a story and many 'conspiracy' theorists out there. Sometimes I think the truth lies somewhere right in the middle of each.

I got 2 things from it. First, all of us with cf and all care centers should constantly be challenging oursleves to improve. Cf is an ever changing disease and no center will ever get to the point where they've done all they can-they have to constantly learn and do research to get better. Or at least they should.

Secondly-the article shows-to us with cf, and to the average joe that read it that doesn't know anything about cf-just how much we have to do to take care of ourselves. It helped me to see that I could even be doing more to take care of myself.

As far as not having some sources sited in the article, and the question of facts not being accurate-maybe that's true. I don't know. But, people write every day in mags and newspapers things that are a matter of opinion, stretching the truth or outright propaganda about politics, celebrities, ect-and no one seems to mind it!

So give it a break!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[mneville]

The ratings of EVERY accredited CF center will be made available to
the public in November I believe. It will be on the web. We went to
Warwick about a year or so after reading this article. He is an
amazing man with a message of hope to all CFers. He thinks CF will
see a normal life expectancy in his lifetime (he is 79).<br>
<br>
Megan

 

[Jane]

My social worker gave us this link a few years ago after we were questioning the push to get the boys g tubes. She said our clinic wasn't where they wanted to be and thus the recent push for better nutrition and germ prevention.


Its interesting when statistics are presented, but they need to be read with a grain of salt, like Amy pointed out. We just found out our hospital has a lower success rate for transplants than others nearby. When questioning this we were told it is because they will accept risky patients (ones w/ bacteria) when others won't. Those details aren't included in the stats. You have to do some research too.

 

[amber682]

I went to a cf conference once that addressed the whole bell-curve
topic. Can I ask if you all have asked your centers what the
average life span at their clinic is (the article mentioned it
being higher at some centers). Or if they rank average or above
average.<br>
<br>
I know it sounds funny but I actually feel embarassed to question
the docs about this kind of thing sometimes, like I'm
second-guessing someone who knows more than me. I'm not really sure
how to bring up questions like these, but I really wonder a lot
about it because we recently moved and go to a different center.
 

 

[dramamama]

I called Preston campbell (sp?) at the CFF after this article came
out in 2004 and demanded to know where my center stood....not only
would he not tell me, but he said that info was not even available
to them...like the CFF didn't know one clinic was having such
amazing statistics.  <br>
<br>
<br>
Apparently, soooo many people contacted the CFF after this article
they are now going to make the rankings public by the end of 06 or
07.  My doc, who happens to help classify clinics, said it
would be bad for clinics because of funding....I was like,
"screw funding!!!  My health is at stake and I want to
know who I need to go to be better....."<br>
<br>
<br>
He also told me not to look at that clinic like it was the end all
be all because they have very few indigent patients there as
opposed to places with many indigent patients so compliance affects
the actual rating of a clinic.  I was sooo furious....
 while I see his point, it cannot affect it to that degree.
 The clinic in Minnesota is sooooo much more pro-active...and
THAT is why they have statistics.

 

[dramamama]

...and that is why they have statistics??? I meant that is why they
have such great statistics.<br>
<br>
m