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Author Topic: The Most Important Thing I have Learned  (Read 8726 times)
kitkatz
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« on: May 10, 2009, 09:15:37 PM »
What is the most important thing you have learned as a dialysis patient or kidney patient?



The most important thing I have learned is to be sure to ask questions of the medical teams I am dealing with and be up on what is going on with my own treatments.
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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
willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: May 11, 2009, 07:34:43 AM »
The most important thing I have learned is to look for information in several places. Don't just simply accept what the medical team says. Stay fully informed.
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
dwcrawford
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Getting the heck out of town.
« Reply #2 on: May 11, 2009, 07:48:59 AM »
That I am no longer in total control and that, if you live long enough, God's gonna get you....
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
cherpep
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« Reply #3 on: May 11, 2009, 07:50:43 AM »
To embrace every moment that you feel good, live those moments to the fullest!
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Zach
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"Still crazy after all these years."
« Reply #4 on: May 11, 2009, 08:24:14 AM »
Trust but verify.

8)
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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."
MandaMe1986
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« Reply #5 on: May 11, 2009, 08:26:55 AM »
That you need a doctor you can trust.  And that you need to move forward and not back.
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
Rerun
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Going through life tied to a chair!
« Reply #6 on: May 11, 2009, 10:16:21 AM »
I obviously haven't learned enough, and that is why I'm continually tested.

           >:(
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #7 on: May 11, 2009, 05:46:53 PM »
I have learned that I am a genuinely positive person.  No matter what, I always manage to see (create) an up side.  People have started calling me Pollyanna ha ha ha.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
cherpep
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« Reply #8 on: May 12, 2009, 09:32:18 AM »
How strong I really am.
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peleroja
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I have 16 hats, all the same style!
« Reply #9 on: May 12, 2009, 09:53:23 AM »
All of the above, and to keep a sense of humor about it all.
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jbeany
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« Reply #10 on: May 12, 2009, 10:02:26 AM »
Learn as much as you can so you can make truly informed decisions.  Remember that the doctors don't get the final say in what you want to do.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
LightLizard
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« Reply #11 on: May 12, 2009, 11:03:45 AM »
most people are insane and it's best  to let what they say go in one ear and out the other.
  :sir ken;
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dwcrawford
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Getting the heck out of town.
« Reply #12 on: May 12, 2009, 11:13:48 AM »
HEHE...
Most people are insane.  Join them and enjoy.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
Sunny
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Sunny
« Reply #13 on: May 12, 2009, 12:04:55 PM »
That I can learn to accept and adjust, no matter what happens.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
KT0930
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« Reply #14 on: May 12, 2009, 05:49:57 PM »
That I'm the only one who knows my medical history completely AND my body. I am my best and only advocate.
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
cherpep
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« Reply #15 on: May 13, 2009, 10:53:16 AM »
How lucky I am to have such a supporting, loving family.
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Lucinda
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Life is great!
« Reply #16 on: May 13, 2009, 02:32:55 PM »
That this site is far more informative than most health providers.  They just don't have all the answers....
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Ken Shelmerdine
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Life's a bitch and then you go on dialysis!
« Reply #17 on: May 13, 2009, 03:02:41 PM »
That the medical profession constantly contradicts itself in its knowledge of kidney disease.
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Ken
Wenchie58
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Always carrying the big silly grin!
« Reply #18 on: May 13, 2009, 03:51:24 PM »
I've learned that I truly CAN smile through anything.  And I have learned that all of you and this site are worth your weight in gold!!   :flower;  :cheer:
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
petey
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« Reply #19 on: May 13, 2009, 04:35:38 PM »
Quote from: Rerun on May 11, 2009, 10:16:21 AM
I obviously haven't learned enough, and that is why I'm continually tested.

           >:(

Rerun,
Marvin and I have learned that we are going to be continually tested over and over and over and over again -- and then tested a little bit more.  There's nothing we can do except "ride it out."


***
I think I've also learned that I'm stronger and braver than I ever thought I could (or would have to) be.

I've also learned that I'm NOT the strongest one (emotionally, mentally, spiritually) in my marriage.  For the first nine years, I thought I was the one who "carried" our marriage through the emotional, soul-testing times.  When Marvin was diagnosed with ESRD and started dialysis, I realized I was wrong -- it's Marvin who passes out the inner strength that keeps us both going.

I've learned that a "different" life (by others' standards) can still be a good life.

I've learned that sometimes it's better to laugh than to cry.

I've learned that in spite of all of the setbacks and bumps in the road in the last 14 years that Marvin and I are two of the luckiest people on earth.
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monsterman
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Impossible Is Nothing

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« Reply #20 on: May 13, 2009, 06:13:47 PM »
Ask question..
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Chris
MandaMe1986
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« Reply #21 on: May 13, 2009, 06:20:52 PM »
yes monsterman that is so ture. you must ask questions...
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
RichardMEL
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« Reply #22 on: May 14, 2009, 08:11:19 AM »
A far from complete list:

* Just "do it!!" - you may never get the chance again! Live life as much as you can

* Don't sweat the small things - there's much more serious stuff to worry about :)

* Sometimes you just have to sit back and laugh at it all - and that can be its own therapy.

* Understanding is as much power over your own treatment and situation as anything else. For me it is important to know and understand what is going on and why.. and that will make it easier for me to do the things I need to do to make my treatment the best/easiest it can be.

* Listen to your body. It knows.

* Having people who understand you can share with is a godsend - hence IHD is an invaluable resource.

* The women of IHD rock!! The men too.. just in a different kind of way for me!!  :rofl;

* Being positive as much as possible can do wonders
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
jbeany
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« Reply #23 on: May 14, 2009, 08:15:40 AM »
Quote from: RichardMEL on May 14, 2009, 08:11:19 AM
A far from complete list:


* Understanding is as much power over your own treatment and situation as anything else. For me it is important to know and understand what is going on and why.. and that will make it easier for me to do the things I need to do to make my treatment the best/easiest it can be.


My tech is taking the test to become certified this weekend.  She has been studying like crazy the last month.  She's going to lend me her text book as soon as she takes the test.  along with everything else, it explains all about how the machines work - something I don't know much about.  I'm interested to read it and find out more.  I want to know as much as I can!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Tinah1968
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ME
« Reply #24 on: May 14, 2009, 10:49:11 AM »
Quote from: RichardMEL on May 14, 2009, 08:11:19 AM
A far from complete list:

* Just "do it!!" - you may never get the chance again! Live life as much as you can

* Don't sweat the small things - there's much more serious stuff to worry about :)

* Sometimes you just have to sit back and laugh at it all - and that can be its own therapy.

* Understanding is as much power over your own treatment and situation as anything else. For me it is important to know and understand what is going on and why.. and that will make it easier for me to do the things I need to do to make my treatment the best/easiest it can be.

* Listen to your body. It knows.

* Having people who understand you can share with is a godsend - hence IHD is an invaluable resource.

* The women of IHD rock!! The men too.. just in a different kind of way for me!!  :rofl;

* Being positive as much as possible can do wonders

I learned that I am in control of my own destiny. Only I can make the adjustments in my life to stay alive.
I learned that My Family is my Rock
I learned that Friends worth keeping will stick around through the good and the bad.
I learned that I am lucky to have found IHD.
I learned that God is my Inner Strength.
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Tina
Fistula Oct 2007
Started Dialysis May 22, 2009
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