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Author Topic: Quality of Life  (Read 39285 times)
cassandra
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When all else fails run in circles, shout loudly

« Reply #150 on: June 04, 2012, 03:23:18 AM »

Unbelievable! So glad I have the good fortune to live in the UK (concerning the billing arrangements that is)
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Grumpy-1
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Make me the person my dog thinks I am

« Reply #151 on: June 04, 2012, 05:34:59 AM »

I wonder what the difference in cost of PD verse Hemo (in a clinic) are.  I see the amount the clinic and doctors send into my insurance and what the insurance pays.  Pd is not cheap.  But is it cheaper than maintaining a clinic and having a staff man it?  I would it so.  Whammo is right, I don't think the current model can continue, but not sure what is a better method and still provide quality care to us patients.  Grumpy 
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Make me the person my dog thinks I am
Lillupie
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wedding 12-10-11

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« Reply #152 on: June 04, 2012, 06:28:38 AM »

I wonder what the difference in cost of PD verse Hemo (in a clinic) are.  I see the amount the clinic and doctors send into my insurance and what the insurance pays.  Pd is not cheap.  But is it cheaper than maintaining a clinic and having a staff man it?  I would it so.  Whammo is right, I don't think the current model can continue, but not sure what is a better method and still provide quality care to us patients.  Grumpy

Yes PD is cheaper which is why some clinics are educating people on PD, since the passing of the bundling. It is about $100,00 a year, give or take for hemo and about 60,000-70,000 for PD. Well for my supplies are $200 a day
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
RenalSurvivorDotCA
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10 Year Survivor

« Reply #153 on: June 05, 2012, 04:36:50 AM »

My QofL wasn't horrible when I was on incenter HD. I was never a candidate for PD. I adapted my life. Wasn't great, but hey, I was still breathing. Now I'm on nocturnal HHD. 7hrs x 5 nights while I sleep. Much better dialysis; 35hrs a week vs the 15 I used to get on conventional HD. And it's all while I'm sleeping so my entire waking life is mine again. Before, I had a hard time keeping my phosphorus in acceptable levels. Now my labs have been outstanding for months. My food AND fluid restrictions have been removed (maybe relaxed is a better word). I think noc HHD is as close to a transplant as you can get.

As far as the last topics for the last few days of this thread, I'm very confident that nanotechnology will produce nano-level filters(dialyzers) for us that will be dramatically superior to present technology.

Someone above posted that their unit pulls off too much fluid; but why would you allow that? Don't you calculate your own goals? When I was incenter, they would tell me the goal they calculated and I would concur or not. We, the patients, are ultimately in control of our treatments.
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Your life IS worth living. Fight for it!
cassandra
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When all else fails run in circles, shout loudly

« Reply #154 on: June 05, 2012, 06:06:26 AM »

Well said, I see all medical staff as advisers
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
YellowRose
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« Reply #155 on: June 06, 2012, 01:36:59 PM »

"It is just a shame that there isn't more compassion and understanding towards people with ESRD. "

I have to say the above statement hit me hard because even thought I am with ESRD but often I am lack of compassion and understanding to us as well ....
Sometimes on TV, it seems ESRD mean death sentence without transplant. I will be thinking "come on... it is not that bad, work with your doctor, make some like adjustment,
life move on, I did it OK for more than 10 years " but until ...

last year, I was doing in-center hemo, I saw some people were really really sick ;
last year, my sister was battling with breast cancer ;
early this year, I lost my best friend for 25 years to overian caner ....

I realized that I need to be more compassion and understanding not only to people with ESRD or people with Cancer but everyone around me,
because they may have their own burden or suffering I could never understand and I would never want to be in as well.

It is truth there are things I would like to do but could not due to ESRD but I choice not to focus on that, instead ....
to feel the warm that california sun gives me; to see the beauty of the fog in San Francisco;
to enjoy the sweetness of that one cherry; to cry and laugh with my family & friends...
to live every day to remember what matter to me so I will not have waste the time/blessings given me

hmm.... I felt much better now. How about you?!


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Dec 1993 start with CAPD
May 1995 1st transplant
Jan 2007 start with CCPD
April 2011 start with Hemo
Sept 2012 2nd transplant
Kitty Cat
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Lila & Smudgie

« Reply #156 on: June 06, 2012, 04:06:29 PM »

YellowRose,

That was beautifully put and I agree with you 100%.
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