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Author Topic: I need to rant  (Read 2709 times)
Brightsky69
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« on: July 22, 2008, 10:17:25 AM »

Hi Everyone –

I hope you guys are doing well. I am about over it myself.  :banghead; I know I am getting closer and closer to dialysis. I’ve tried cutting back on protein and I try my best to stay away from salt. It’s like I can’t win….I cut back on protein and my anemia seems to be getting worse, if I eat more protein then that is not good for my transplant. I can’t even LOOK at salt without my ankles swelling. I am already on lasix for the extra fluid. I want to hang on to this transplant for as long as possible. But food is becoming a new enemy.

Before my transplant I use to do CAPD. This go around I want to try APD using a cycler machine at night. I wonder what it’s like. Do any of you use this type of dialysis?
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
pelagia
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« Reply #1 on: July 22, 2008, 11:36:33 AM »

Wish everything was going better for you.  It sounds like you've done everything you can as you get ready for a new stage.  :grouphug;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
peleroja
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« Reply #2 on: July 22, 2008, 11:46:43 AM »

I just graduated to CCPD after 5 years on CAPD.  The thing you have to get used to is the noise of the machine.  I'm on my 5th machine, due primarily to the noise.  Luckily I have a pretty big house, so I put the machine in the hallway (almost a room in itself as it's 11 feet wide), and I use an extension on the patient line so I can sleep in my bed.  Once I got that figured out it has become a piece of cake.  I hope you get to keep your transplant, but if not, CCPD is the way to go!
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Adam_W
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« Reply #3 on: July 22, 2008, 12:32:41 PM »

I hope your transplant hangs on longer. I'm still waiting to switch to CCPD (it will be even longer now because I have a leak in my peritoneum), but I'm really looking forward to using the cycler. As for the noise, I've personally never had a problem with any kind of noise as long as it's constant-I can't sleep with the TV or radio on. I probably could, however, sleep with a jet engine running beside my bed. OK, maybe not quite something like that. Anyhoo, hopefully you won't need dialysis again for a long time, but I would definitely recommend a return to PD (or even home hemo if you can).

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
IUNurse
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« Reply #4 on: July 22, 2008, 05:32:38 PM »

Baxter's cycler is very quiet.  Most all of my patient sleep right through it.  I think it depends on if you are a light sleeper or a heavy sleeper.  Good luck and I hope you don't have to think about dialysis anytime soon!
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It is not what you say to a patient that he will remember, it is how you made him feel.
okarol
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« Reply #5 on: July 22, 2008, 05:37:45 PM »



I am sorry you're losing that kidney, but it sure did last a long time!
Do you plan to get another transplant?
Good luck with the cycler.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
paris
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« Reply #6 on: July 22, 2008, 05:39:17 PM »

I'll keep hoping the transplant will last a little longer.  Sending good thoughts :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
stauffenberg
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« Reply #7 on: July 22, 2008, 05:59:19 PM »

As long as the diuretic is still being prescribed for you, that is a good sign, since diuretics are useless when the residual renal function sinks to a point very close to dialysis being necessary.
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Brightsky69
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« Reply #8 on: July 25, 2008, 06:48:36 PM »

Thanks for all of the support.

I got the call today. I am  officially on the transplant list. Let the wait begin!   :-\
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
okarol
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« Reply #9 on: July 25, 2008, 06:52:32 PM »

Thanks for all of the support.

I got the call today. I am  officially on the transplant list. Let the wait begin!   :-\

Cool!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Adam_W
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Me with Baron von Fresenius

« Reply #10 on: July 25, 2008, 07:13:29 PM »

Good to know your on the list. Hopefully that new kidney will come for you really soon.  :grouphug;

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
pelagia
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« Reply #11 on: July 25, 2008, 07:17:41 PM »

Happy to hear that you are on the list!  :)
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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