“Mere”? Not hardly! I think folks with CKD (I’m really starting to loathe the word “patients” for people who have a chronic condition–it just doesn’t seem to me to fit) are some of the best advocates.
– First of all, y’all are so hard to find that EVERYONE wants to find you, and they listen raptly when you have anything to say.
– Second, you still have some ENERGY to be involved. Once folks start standard in-center HD, as 92% of them do if they get to CKD5, it’s like deflating a balloon. All most of them can do is drag themselves to and from their inadequate treatments. So, folks with predialysis CKD and those on home treatments or with transplants are the community’s advocates. Those 92%-ers really don’t have much of a voice. (If you are fatigued, though, it’s important to be checked for anemia and treated if you have it).
– Thirds, you are still MOTIVATED to have as close to a normal life as you can. I fear that the 92%-ers give up on that, establish a new normal (that is likely far lower than it needs to be) and many that I have seen live in regret for what they didn’t do in the past.
So, your voice is actually critical, and I, for one, would like to hear a lot more of it!
[QUOTE=Dori Schatell;20527]“Mere”? Not hardly! I think folks with CKD (I’m really starting to loathe the word “patients” for people who have a chronic condition–it just doesn’t seem to me to fit) are some of the best advocates.
– First of all, y’all are so hard to find that EVERYONE wants to find you, and they listen raptly when you have anything to say.
– Second, you still have some ENERGY to be involved. Once folks start standard in-center HD, as 92% of them do if they get to CKD5, it’s like deflating a balloon. All most of them can do is drag themselves to and from their inadequate treatments. So, folks with predialysis CKD and those on home treatments or with transplants are the community’s advocates. Those 92%-ers really don’t have much of a voice. (If you are fatigued, though, it’s important to be checked for anemia and treated if you have it).
– Thirds, you are still MOTIVATED to have as close to a normal life as you can. I fear that the 92%-ers give up on that, establish a new normal (that is likely far lower than it needs to be) and many that I have seen live in regret for what they didn’t do in the past.
So, your voice is actually critical, and I, for one, would like to hear a lot more of it![/QUOTE]
I agree, I think we have a new blogger in the making!!
Moosemum - we need you!
If I gave the impression that ‘mere’ patients (and Dori is right that ‘patient’ isn’t a good, fit or right-seeming descriptor) are not wanted, then I gave you a 180 degree impression from what I really believe and what I meant to give.
The patient - you (and let me call you a ‘patient’ for the moment for lack of a better term) - is what it is all about.
You are the focal point(s).
Your opinions, needs and aspirations are what drives this whole thing we might call ‘seeking better dialysis solutions for all’.
Why else are we here?
In my previous post ‘On my return …’, I put the patient first in my list of the groups we need to engage and hold fast as forward momentum is gained.
Please … never, ever think that you aren’t wanted/needed in the process. You are the core of it. I love the way you have engaged.
Dori is (again - as ever) right. You are a refreshing new voice. Stay with us.