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Author Topic: Yeah, I hate dialysis too...but am thankful for it  (Read 871 times)
Mr Sparky
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« on: May 05, 2016, 06:38:29 PM »

Dialysis has tormented me since age 21 after my kidneys have failed cause Lupus decided to pick a bone with with me. Not sure how I ended up with this curse of lupus, but my Ndad (he is pretty narcissistic sometimes) says it's my fault, among other things I haven't the slightest bit of control over. Ok. I did have a very awful diet growing up and in a way I think it's possible that diet plays a huge role with whether or not someone can develop lupus and all other diseases. But the thing is, I wasn't eating any better when living with him as a kid than I did when I went to live with my mom as a teen up until young adulthood.

 Yep. In classical Ndad style, mine's likes to shift the blame on anyone but himself. Guess it helps with his crappy self esteem or whatever. He makes me feel very guilty for being on dialysis. Like I purposefully brought this onto myself. I wouldn't even wish this on my worse enemy. It's so hard to be strong in times like this. But I am learning how to be, cause if I am weak, I won't live to see another mundane day. But it's too scary just to quit, roll over and die. I am trying to get on the list. Just waiting to get a call that the hospital I want to go to has received my questionnaire. I'm just tryin' to hang in there.....

"Dialysis ain't got nuthin' on me."

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When all else fails run in circles, shout loudly

« Reply #1 on: May 05, 2016, 10:13:12 PM »

Welcome to the site Mr Sparky


I always find it surprising how many people blame the patient for being ill.

Hang in there, Cas

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
       still on waitinglist, still ok I think
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« Reply #2 on: May 06, 2016, 12:49:25 AM »

 :welcomesign; Welcome to the site and world of dialyzing. Many folks here all eager to help and join forces to search for answers to the things that need most answered and in ways we can understand. It's a place to come in and take off your hat and have a rant, if you want. Even serves as the place to come just to pick each others bones on the latest issues life has dealt us. So good luck to you, take a browse around and speak up if you have questions or concerns or just some steam to vent. No need to go it alone when all of us are here. Family sometimes doesn't always "get it" but we do!

Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Michael Murphy
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« Reply #3 on: May 06, 2016, 05:41:54 AM »

Blamers got to Blame.  ESRD sucks but to blame someone for their childhood eating habits is a bit nutty. People who are that way are generally covering up their own feelings of failure.  Dialysis sucks but it's better than the alternative.  I hope you are selected soon for a transplant soon.  Personally I was concerned that I had done something that gave me ESRD. Then I read a article about ESRD causes it listed a bunch of childhood ailments that caused kidney damage and I realized I had them all.  In my case their is no one to blame just bad luck.  Besides what difference does it make. All that matters is how you go forward.  Looking back is for losers.
Charlie B53
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« Reply #4 on: May 06, 2016, 06:33:07 AM »

Ndad needs to be knocked in the head.   His refusal to admit his own errors and attempting to blame you instead are just further proof of mental failure.    It may be a long time before you will be free of the mental scars he has caused.

I on the other hand, know that some of my choices in life because on a lack of our educational system to teach us the importance of hydration and blood pressure control, have greatly accelerated the demise of my kidneys.   I have no doubt that they would have failed anyway, I just hurried it along.   Oh well, that's history and cannot be changed.   But since then I have learned to try to teach my Grandchildren a little better.   It may be in our genes, but hopefully they will know better how to forestall kidney damage much longer than I.

History is a tool we need to learn so to not repeat our mistakes.   It doesn't matter that it happened so long as we learn from it so to make sure that it does not happen to our Children.

No matter how you got here, you found us, and we Welcome you to our damaged Family.   Together we share our failures and thus become stronger together.   Being Human we can only try.   

Take Care,

Charlie B53
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« Reply #5 on: May 16, 2016, 01:56:40 PM »

Hello Mr. Sparky and welcome to IHD ... and please don't believe that your suffering from Lupus is in any way connected to lifestyle etc.
For example I was told by doctors that "my" Lupus/SLE/MCTD was most probably inherited from my genetic mother who died shortly after my birth ...
... And like cassandra, I find it surprising how many people blame the patient for being ill.
Hang in there and best wishes from Kristina.  :grouphug;

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 ...
Vt Big Rig
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« Reply #6 on: May 18, 2016, 05:03:39 AM »

Welcome to the site Mr Sparky.

Like most everything, I think, many things can be pointed to as the cause for this or any other disease. I am 64 and in my case, I think it was years of high blood pressure, too many doses of painkillers for my bad knees, then topped off by diabetes at 48.

Regardless of the cause, I deal with it the best  can and take the good times that I can. I know there are better better off, but I am sure there  are people worse off.

Take care, keep your chin up, visit often, post often. Welcome to this community.

VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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