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Author Topic: how long on dialysis?  (Read 4899 times)
skinnacat
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« on: January 22, 2015, 04:23:47 PM »

i have just started doing pd dialysis...its been like 2 months now and
i was wondering how long all of you have been doing dialysis??
i have noticed many of you have been on here for quite a while and that gives me hope that i can do this dialysis stuff
and hopefully live many more years ...i have heard and read alot of negative stuff involving dialysis but i chose to follow my
doctors orders and be as positive as i can because i plan on being here for a good long while yet.
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jeannea
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« Reply #1 on: January 22, 2015, 09:32:28 PM »

I was very lucky. I had 3 years of dialysis then a transplant.

Everyone is different. If you do your best with your meds, liquids, and diet, you will most likely do better. Of course there are negatives. Keep open communication with your doctors. Educate yourself. Ask for help when you need it. You should be able to be on dialysis for quite awhile. Good luck!
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cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: January 22, 2015, 11:15:25 PM »

Hi skinnacat, all of the above, and some luck is what you need. And really do educate yourself, and open your mouth when you think it's needed.
Gobby patients do tend to live longer than docile once.
I'm on D, since 18, had dad's kidney 13 yrs. still around 32 yrs later.

Lots of luck, and love, Cas
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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
kristina
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« Reply #3 on: January 23, 2015, 04:19:27 AM »

Hello,
I am very new to dialysis, I "only" have started on 13th December 2014
and I am pleasantly surprised about how well my body "takes to it" (touch wood it continues like that...).
I reckon that I must have been pretty "run down" before finally admitting to dialysis,
because my body started to revive itself noticeably after I finally started with "it".
Everyone is different, but it is most important for me & my body to keep as fit as possible
(going for a walk whenever I can etc.) and to keep to my vegetarian diet
in order to keep my body and my stomach and my thoughts without any upheavals.
Everything connected with Dialysis is as much of an upheaval as my body seems to be prepared to take ...
For me it is also important to keep in constant dialogue with the doctors and other patients to learn more ...
Of course, I have heard and read many negative opinions about dialysis, but I am very grateful that dialysis exists,
because it keeps me agoing and it keeps me alive and it is my life-support-system ...
... and without it I would not be able to sit here and write...
Good luck wishes from from Kristina.
« Last Edit: January 23, 2015, 04:21:07 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
obsidianom
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« Reply #4 on: January 23, 2015, 05:04:23 AM »

My wife is at almost 3 years now.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
cattlekid
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« Reply #5 on: January 23, 2015, 07:18:51 AM »

27 months for me....started January 2011, immediately started transplant workup as well.  I was placed on the transplant list in June of 2011.  A year later, I transferred my waiting time to another center and received my transplant in April 2013. 
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Deanne
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« Reply #6 on: January 23, 2015, 08:30:55 AM »

I know some people here have been on dialysis for 20 or 30 years. Hopefully they'll chime in.

I don't think PD lasts forever, but it should last a good long time (years) before you need to consider HD. I went on the transplant list 2 years before I started dialysis and ended up only doing PD for six months before being called for transplant. PD wasn't nearly as bad as I thought it would be. I mostly lived a normal life, other than needing to head to bed at 7:30, both to get my time in on the cycler and get up for work on time, and because I was always tired by then anyway. Maybe the tiredness would have gone away after a couple more months.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
dublin
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« Reply #7 on: January 23, 2015, 09:32:41 AM »

Hi just over 3 years very long drawn out years good luck :waving; :bandance;
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noahvale
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« Reply #8 on: January 23, 2015, 10:37:23 AM »

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« Last Edit: September 19, 2015, 08:51:19 AM by noahvale » Logged
Zach
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"Still crazy after all these years."

« Reply #9 on: January 23, 2015, 01:04:05 PM »

There are many of us who have reached our 15+ years on dialysis.
As the saying goes, "Life is what you make it."

Sounds like you've got what it takes!!

 :beer1; :beer1; :beer1;
« Last Edit: January 23, 2015, 01:08:05 PM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
del
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del and willowtreewren meet

« Reply #10 on: January 23, 2015, 04:58:04 PM »

17 1/2 years for hubby!!
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Don't take your organs to heaven.  Heaven knows we need them here.
skinnacat
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« Reply #11 on: January 24, 2015, 05:53:48 PM »

thanks noahvale for all the great links...much appreciated....i am gonna make sure i always do my treatments exactly like the nurse trained me to do to
avoid infections and to make sure i eat lots and lots of protein..i do get kind
of tired of all the meat though and those wonderful eggs ::) so far its been pretty good on pd and i am glad i chose it but theres so much that i have had to learn
and so many vaccines i have had to get and seems like theres always some test i need done...i go for the pet test on tuesday so that should be interesting

 
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skinnacat
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« Reply #12 on: January 24, 2015, 06:09:21 PM »

oh and thanks to all of you that responded to my question....it means alot to me
i do worry about the d word....can't help it i guess...i have twin boys that need me so i am
gonna try to do my very best at this dialysis thing and ya i am always asking questions and stuff
i think the nurses get sick of me a little bit...because i am always calling them about something.
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Lucinda
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Life is great!

« Reply #13 on: January 26, 2015, 08:26:16 PM »

Hi skinnacat.

I have been on dialysis seven years and started my own business after being on it six months and now I work full-time and have only recently had a couple of issues but I seem to be on top of them now.  I am on hemo and a couple of my friends over here have been on it over 30 years.  They have never wanted to have a transplant so they accepted their fate and forged on.  They are both happy and healthy.  When you wake up in the morning you have two options.  Stay in bed and feel sorry for yourself or smile and be thankful you are here to enjoy another day and get up and do it.  I know it is hard some days but you will feel better for it.  The more normal your life is, the less you will feel like you are missing out.   :cuddle;
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kristina
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« Reply #14 on: January 27, 2015, 06:08:25 AM »

Hi skinnacat.

I have been on dialysis seven years and started my own business after being on it six months and now I work full-time and have only recently had a couple of issues but I seem to be on top of them now.  I am on hemo and a couple of my friends over here have been on it over 30 years.  They have never wanted to have a transplant so they accepted their fate and forged on.  They are both happy and healthy.  When you wake up in the morning you have two options.  Stay in bed and feel sorry for yourself or smile and be thankful you are here to enjoy another day and get up and do it.  I know it is hard some days but you will feel better for it.  The more normal your life is, the less you will feel like you are missing out.   :cuddle;

Thank you Lucinda for sharing with us your experiences
about how to "take" and "treat" dialysis and how to get on with life despite dialysis ...
Your thoughts are very inspiring and give great hope !
Thanks again for sharing your experiences with us.
Kind regards and best wishes from Kristina.   :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
thegrammalady
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« Reply #15 on: February 11, 2015, 08:05:55 AM »

9 years here. In lucky except for my kidneys in extremely healthy. And I intend to stay that way. The key is knowledge and knowing that no one is responsible for you except you. Know your body. Know your labs. Question everything. And keep questioning until you get an answer and understand. My mantra is "its my life do it my way or don't do it at all" and my doctor backs me. I question everything he says and he questions me. Works well.
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s
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
frankswife
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« Reply #16 on: February 11, 2015, 03:29:19 PM »

28 months for hubby, on the list 11 months.
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