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Author Topic: We are so afraid that this disease is going to kill us but....  (Read 6983 times)
goofynina
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He is the love of my life......

« on: May 20, 2006, 11:20:17 AM »

I am not too sure which category this should or will fall in but i was thinking,  We are so afraid that this disease is going to kill us but what we should be worried about is some of the small stuff that even healthy people need to worry about, such as, getting bit by a mosquito, contacting the bird flu, getting into a car accident, stuff like that.   When it is our time to go, we are going to go no matter which way,  it isnt necessarily going to be from dialysis people.  I know it sounds dumb but i just had to get it off of my chest.  Don't spend what time you have left wondering when and how your going to die cuz there is a good chance that it may not even be from this disease,  i know the odds are against us anyways, but says who??? NOT ME!!!  I am going to live everyday to the fullest and treasure what time i do spend here.  I am tired of being so down and depressed,  only I can change how i feel about my life and the way i live it.  The way i see it, God gave me a second chance and i am happy He did.  Transplant or no transplant, I am alive today and i look forward to tomorrow... i hope all of you learn to too.



I moved this thread from "Transplant Stories" to "General Disscussion" I think the post deserves it's own thread. It will make a very good discussion. :)

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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
kitkatz
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« Reply #1 on: May 20, 2006, 02:35:18 PM »

Still does not mean I can't hate what has happened to me in this life.  I can be grateful to be alive, but I can still have feelings about it!  I think a tra-la-la attitude is going to get someone punched in the jaw by other people who have been here and done this longer. :-[  There are days when life just sucks.  There are other days when the sky is blue and life is good.  I am not afraid this disease will kill me, I know it will eventually and that is all right with me.

Katherine
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Rerun
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Going through life tied to a chair!

« Reply #2 on: May 20, 2006, 07:25:26 PM »

I do NOT enjoy being sick and tired all the time.  I do NOT enjoy the fact that I'm on "Life Support."  I do NOT enjoy the way my life is.  That is the truth.  When you are at the top of the Mountain of Life it is a LONG way down to the bottom where there is a dialysis machine waiting for you.  Sorry, but I do not like my life the way it is and I'm with Kitkatz....  it will eventually get me and that is just fine.
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kevno
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« Reply #3 on: May 22, 2006, 04:54:18 AM »

I would not fear renal failure, that is not the thing that kills you in the end. It is a the complications of renal failure. Bad heart, vein damage and so on. It is always something else that gets us in the end, very rare renal failure. I have spoken to Doctors, even thay say, are you ready for this. On the death certificate it is rare to put just "Renal Failure."

I now feel miserable >:(

It's about time we had a happy topic :D

Kevno
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
kitkatz
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« Reply #4 on: May 22, 2006, 08:36:15 PM »

Okay Kevno, just to put a little lightness in this conversation...

Why did the elephant cross the road?   (Remember the old chicken joke?) scroll down!












Because the chicken was on vacation!   (LOL) >:D >:D
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Panda_9
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« Reply #5 on: May 23, 2006, 02:59:03 AM »

At times I get sooo pi**ed off that this has happened to me, but shit what can you do? You just have to live life as normal and as best you can, and be greatful there is at least a treatment for this horrible thing. I actually have got alot more scared since joining this forum and reading it from start to finish. I think its important to stay positive, however shit things are. If I let things get to me, I end up with a messy mind, which is not good when you have to hook yourself up to the machine by yourself.
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kevno
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« Reply #6 on: May 23, 2006, 09:53:12 AM »

Ha! Ha!

I bet you fell off you dinosaur the first time you heard that >:D
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
kitkatz
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« Reply #7 on: May 23, 2006, 04:04:32 PM »

Yep.. I sure did fall off the dinosaur.  It was a long drop, too.  Hit my head on the way down. >:D >:D

What do you call a group of ducks all gathered together in a box?

Any guesses?
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kevno
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« Reply #8 on: May 23, 2006, 04:14:02 PM »

Well as long as you fell on you softest part >:D

Have you been reading those under sevens comics again >:D

No idea ???
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
Rerun
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Going through life tied to a chair!

« Reply #9 on: May 23, 2006, 08:28:52 PM »

A box of doctors?  (get it Quacks)   >:D
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kitkatz
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« Reply #10 on: May 23, 2006, 08:40:13 PM »

I like that answer Rerun!

The answer: You have a box a crackers (qwackers)

Teehee!

Katherine
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
meadowlandsnj
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« Reply #11 on: May 26, 2006, 04:00:51 PM »

When  it's your time to go, you're gonna go.  You can get hit by a car, you can be struck by lightening, anything can happen to you and there's not a dam thing you can do about it  I  don't mean stand in the middle of the street and play car tag or go out in the thunderstorm and stand under a tree but life happens to you.  I know of one circumstance where a lady in a grocery store was killed because a can fell on her head.  Someone on the other side pushed a big can and it fell on her skull causing all kinds of brain damage.  When my time comes I hope it's not a slow lingering painful death.  I want to go out quick and with nice  underwear on.  Remember when you were a kid and your mom always told you to put on clean underwear in case you were in an accident?  I was in a car accident and I happened to be wearing my bleach stained pink (formerly red) panties with the hole in the crotch.  Good thing I was unconscious, I would have been dying of embarrassment
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Sara
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« Reply #12 on: May 26, 2006, 07:56:48 PM »

When  it's your time to go, you're gonna go.  You can get hit by a car, you can be struck by lightening, anything can happen to you and there's not a dam thing you can do about it  I  don't mean stand in the middle of the street and play car tag or go out in the thunderstorm and stand under a tree but life happens to you.  I know of one circumstance where a lady in a grocery store was killed because a can fell on her head.  Someone on the other side pushed a big can and it fell on her skull causing all kinds of brain damage.  When my time comes I hope it's not a slow lingering painful death.  I want to go out quick and with nice  underwear on.  Remember when you were a kid and your mom always told you to put on clean underwear in case you were in an accident?  I was in a car accident and I happened to be wearing my bleach stained pink (formerly red) panties with the hole in the crotch.  Good thing I was unconscious, I would have been dying of embarrassment

LOL, that's too funny!    :D :D :D
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Sara, wife to Joe (he's the one on dialysis)

Hemodialysis in-center since Jan '06
Transplant list since Sept '06
Joe died July 18, 2007
okarol
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« Reply #13 on: July 24, 2011, 02:55:47 PM »

 :bump; Just came across this. Goofynina had it right.  :bow;
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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
MooseMom
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« Reply #14 on: July 24, 2011, 05:32:49 PM »

I may be wrong, but I don't think most of us fear that we will die from kidney failure, but, rather, that we will suffer from it.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Stoday
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« Reply #15 on: July 24, 2011, 06:52:22 PM »

The only ones to die from kidney failure are those who stop dialysis.

We are much more likely to die from cardiac problems than the general population of the same age and gender. Sudden death due to heart arrhythmias related to electrolyte disorders is the most popular.
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okarol
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« Reply #16 on: July 24, 2011, 06:53:51 PM »

I may be wrong, but I don't think most of us fear that we will die from kidney failure, but, rather, that we will suffer from it.

Hmmm I have always been afraid of losing Jenna. And her suffering. They are both up there in my top 10 panic themes.

The only ones to die from kidney failure are those who stop dialysis.

We are much more likely to die from cardiac problems than the general population of the same age and gender. Sudden death due to heart arrhythmias related to electrolyte disorders is the most popular.


Dialysis and kidney patients die from infections too.

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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
*kana*
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« Reply #17 on: July 29, 2011, 02:20:29 PM »

Goof, I like your attitude!  Life isn't fair and I am always thankful that my life isn't worse then it is.  I worked in a hospital and I can tell you there are far worse diseases/issues then kidney failure. 
Stay positive and don't let others be a killjoy! 

Quote
I think a tra-la-la attitude is going to get someone punched in the jaw by other people who have been here and done this longer
I'd much rather have the tra-la-la positive attitude like Goof  then the mean attitude of someone that wants to punch a fellow dialysis patient just because they are trying to make the best of their situation.  You can't change your situation, but you can change how you handle it.   

 
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PD started 09/08
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Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
MooseMom
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« Reply #18 on: July 29, 2011, 02:30:30 PM »

Sure, it would be really nice to just 'change you attitude", but that's easier said than done.  Some people are just wired with the tra-la-la mindset while others are not.  To somehow blame a struggling patient for their "bad attitude" just adds more to their already substantial burden, and I'm sure that's not anyone's intention.

In case anyone is interested, Dr. Agar over at Home Dialysis Central talks a bit about how different people cope, or not.  I thought it was an interesting insight from a nephrologist who has seen many kinds of patients over many years.

http://forums.homedialysis.org/showthread.php/2947-Low-expectations?p=21302#post21302
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #19 on: July 29, 2011, 05:55:50 PM »

Moosemom thanks for the link...interesting. :) 

In the end we can't control what happens to us, just our reaction to the situation. There are days you are going to hate being on the machine....bottom line NO ONE is getting outta here alive!!!

RIP Goofynina!!   :cuddle;

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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« Reply #20 on: July 29, 2011, 09:59:40 PM »

In the end we can't control what happens to us, just our reaction to the situation. There are days you are going to hate being on the machine....bottom line NO ONE is getting outta here alive!!!


Well, there must be something seriously wrong with me because I know I surely can't "control" my reaction all the time.  I remember very distinctly you saying how often you felt angry while on dialysis; I remember this well because I thought to myself, "Geez, if I feel angry NOW, what am I going to feel like once I actually have to start?", and I thought I could see my future in you.  So, now that you have your transplant and you can look back on your months on dialysis, how well do you think you were able to control your reaction to your situation?  Were you pretty successful, or was it an elusive goal?  If you ever DID feel like you couldn't control your reaction, what did you do?  Did you chastise yourself for feeling bad that day, or did you just sort of give in to the anger, believing that tomorrow would be a better day?

Would you like to answer more questions because I bet I could think of a lot more! :rofl;  Maybe this is something we could talk about in Las Vegas because I am always intensely interested in learning the different ways that people cope with dialysis.  You could perhaps give me some tips! :thumbup;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #21 on: July 30, 2011, 12:48:26 AM »

There were some days I let myself be sad/mad and cry, then other days I felt ok...I can see what you mean about not always be able to control your reactions to things...that is true. I guess I always hoped tomorrow would be a better day...when I was having a really rough day I would talk about it here and that seemed to help me. Instead of constantly feeling like I was alone or couldn't cope I reached out to IHD....that was/is a constant support. Also when I quit my horrendous job that made my life a lot easier to deal with.

I think when you first start dialysis it takes a few months to cope and accept. As time marches on you adjust...I think if I would of done nocternal or home dialysis it would of helped my anxiety because I would of felt in more control of the situation and my treatment. That is the one thing I hated about in center D that feeling of helplessness and putting your health into others hands. Also I knew I wasn't getting the optimal D for my body so that added to the anxiety of "Dialysis is killing me" thoughts in my head...when I am back on D I will do things differently the second time around...

xo,
R
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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« Reply #22 on: July 30, 2011, 03:27:00 PM »

Yes, that feeling of having so little control over your treatment can make life suck bigtime.  I know we can't control everything; I know we can't control the fact that our kidneys are crap, but there are things we at least SHOULD be able to control, and one of those things is what modality we use.  As much as I pray that you never have to see a dialysis ever again in your lifetime, if you DO, you will know what you DON'T want, and that's important.

I understand the whole "Dialysis is killing me" idea.  Like any treatment, dialysis CAN kill you if not utilized properly and optimally.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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