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Author Topic: Empathy  (Read 3121 times)
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« on: September 24, 2008, 04:11:39 PM »

Sometime I don't know what to say to the posts that say how bad some IHD members lives are and how they are feeling. I feel for you all so much but I don't know what it's really like because though on paper I should be dead man walking (6% GFR) but I'm not unwell and feel just as fit and normal as I've always felt even though I'm on dialysis.

I feel almost guilty that I can't yet empathise with you all because I've not experienced what it is really like yet to suffer the symptoms. On one hand I want to stay this way for as long as possible but I wish I could contribure more in peoples day to day illness problems. One day I know as my kidney function deteriorates and my energy levels start to decline I will be more qualified to gith my 2 pen,th and I know I'll have the loving support of my IHD Friends.Please have patience with me until then.
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Ken
willieandwinnie
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« Reply #1 on: September 24, 2008, 04:14:43 PM »

Oh Ken, you don't have to say anything. That's the wonderful thing about IHD. A  :grouphug; or a  :cuddle; would be just fine.  :waving;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
kitkatz
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« Reply #2 on: September 24, 2008, 04:16:06 PM »

I know how you feel with some posts.  Just know we understand.  :grouphug;
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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
monrein
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Might as well smile

« Reply #3 on: September 24, 2008, 04:19:53 PM »

Ken, I really hope you never feel so awful that you know exactly how it feels to go through some of the really bad bits.  I do understand what you meant in your post but I think that you might not be fully aware of how your caring comes through regularly in your posts.  Knowing that someone isn't afraid to listen and truly hear our worst pain, our deepest fears and our greatest vulnerabilities is plenty good enough in my opinion.

PS I haven't suffered as much as many here either and I hope I never have to.  If I do I only hope I can muster some of their grace and courage.



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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
paris
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« Reply #4 on: September 24, 2008, 05:24:36 PM »

Ken, you are so valuable here.  It helps to hear good stories, to know people can live a pretty good life with this disease.  You give me hope for the future.  Days I feel overwhelmed, I read posts from some who have dealt with so much and I feel guilty for complaining.  I think the bottom line is, we all need each other.   Sometimes it is hard to come up with the right words to help but we are in this together and a  :grouphug;  can speak volumes.  You are such a gentleman  :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
petey
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« Reply #5 on: September 24, 2008, 05:34:50 PM »

It's easy to say, "I've walked a mile in your shoes," but, really, each person's experience with dialysis, ESRD, transplantation, etc. is different.

I read some of the posts here, and I don't know how to respond.  Usually, I just tell about my and Marvin's experience with whatever the particular subject may possibly relate to.  Sometimes, if it's something we've experienced first-hand, I jump right in and start spouting off.  Sometimes, I don't respond at all -- mainly because I don't know what to say.  Sometimes, I don't understand at all what one member of IHD is posting -- epecially those posts that deal with how "awful" and horrible dialysis is.  Marvin and I (despite joining a forum entitled "I Hate Dialysis") have never hated dialysis.  Now, we don't "love" dialysis, either.  Our emotion about it is somewhere in the middle -- we embrace dialysis for what it does for Marvin (which is, keeps him alive for now).  When someone talks about wanting to stop dialysis, I can't understand that at all.  Marvin has never wanted to stop, and he's never missed a treatment.  I've never wanted him to stop, either.  I don't quite know what to say to the person who does want to stop.  (Not saying we're right, not saying you're wrong if you feel this way -- just saying we've never been there.)

So, back to the topic of the thread.  While we've each had different experiences under the same "dialysis umbrella," each has his/her own perspective, his/her own experiences, his/her own feelings.  I like to think that we're all traveling the same road (the Dialysis Road), but we're each going at a different speed and sometimes traveling in different lanes on the same road.   Some of us are "riding" in newer, faster, more efficient "cars."  If we see someone from IHD stalled out at a stoplight on this Dialysis Road, we should offer a "jump" or maybe a push from behind.  If we see someone on the Dialysis Road being reckless, we should caution them to slow down and watch for the sharp curve ahead.  If we see someone broken down along the side of this road, we should pull over and offer to help.  If we see a funeral procession passing, we should (as we do here in the South) pull over and show some respect.   If we see someone from IHD struggling to get up a steep hill, we should roll down our own windows and shout some encouraging words about how they'll be at the top of that hill soon and then they can coast.  Sometimes, all we can do is simply wave to each other when we pass, and that's okay, too.   :waving;
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #6 on: September 24, 2008, 05:40:17 PM »


Sometimes the only thing you can do is listen.

I am not in pain, but I hurt for those who are struggling. And I cheer and cry and laugh with all of you.

Thank God we have each other!
 :grouphug;
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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
pelagia
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« Reply #7 on: September 24, 2008, 06:39:17 PM »

I know how you feel because often all I can offer is a  :grouphug;  Sometimes the most important thing we can do is listen.  I am grateful when someone has advice or wisdom to share and I am also thankful for the friendship and support I have gotten here. I try to return that when I can. 

And aside from providing support for others, your experiences are important for those who are trying to learn about ESRD.
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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
xtrememoosetrax
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« Reply #8 on: September 24, 2008, 07:53:59 PM »

I like to think that we're all traveling the same road (the Dialysis Road), but we're each going at a different speed and sometimes traveling in different lanes on the same road.   Some of us are "riding" in newer, faster, more efficient "cars."  If we see someone from IHD stalled out at a stoplight on this Dialysis Road, we should offer a "jump" or maybe a push from behind.  If we see someone on the Dialysis Road being reckless, we should caution them to slow down and watch for the sharp curve ahead.  If we see someone broken down along the side of this road, we should pull over and offer to help.  If we see a funeral procession passing, we should (as we do here in the South) pull over and show some respect.   If we see someone from IHD struggling to get up a steep hill, we should roll down our own windows and shout some encouraging words about how they'll be at the top of that hill soon and then they can coast.  Sometimes, all we can do is simply wave to each other when we pass, and that's okay, too.   :waving;
Great analogy, petey. :thx;
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Living donor to friend via 3-way paired exchange on July 30, 2008.

www.paireddonation.org
www.caringbridge.org/visit/marthahansen
Sunny
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Sunny

« Reply #9 on: September 25, 2008, 01:09:11 AM »

Ken,
Hopefully you will never have to feel lousy and will always have the health that you have now. Sometimes it's good just to read and listen to people here.No response required.
Maybe you feel good with your health in spite of it all because of your positive outlook on life. Either that or you've found some magic secret some of us could use! It's not easy to post on some of the threads because of the subject matter or because others have already said it so well.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
Joe Paul
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« Reply #10 on: September 25, 2008, 01:41:53 AM »

Ken,
Hopefully you will never have to feel lousy and will always have the health that you have now. Sometimes it's good just to read and listen to people here.No response required.
Maybe you feel good with your health in spite of it all because of your positive outlook on life. Either that or you've found some magic secret some of us could use! It's not easy to post on some of the threads because of the subject matter or because others have already said it so well.
Amen  :thumbup;
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #11 on: September 25, 2008, 03:19:52 AM »

Thanks for your replies. You are my heroes, all of you. I feel honoured to be part of this wonderful forum. May your God go with you and bless you all.  :grouphug; :grouphug; :grouphug; :grouphug;
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Ken
willieandwinnie
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« Reply #12 on: September 25, 2008, 05:00:00 AM »

See Ken, just a little  :cuddle; or a bigger  :grouphug; is all that is needed.  :-*
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"I know there's nothing to it, but I want to know what it is there's nothing to"
devon
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« Reply #13 on: September 25, 2008, 06:29:02 AM »

There is a great deal of variety here.  We are all walking the same path.  Some of us barefooted, some with a golf cart but it's the same path, just different experiences along the way.

Thanks Ken.

-Devon
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Deanne
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« Reply #14 on: September 25, 2008, 07:46:57 AM »

Ken, I understand what you're saying. I don't post much for that same reason. I get tired sometimes, but I don't think of myself as "sick," so I feel like I'd be one of those cruel techs drinking a Coke in front of someone on dialysis if I "talked" too much.
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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
TynyWonder
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Calvin

« Reply #15 on: October 20, 2008, 07:55:03 PM »

Maybe I am just feeling mushy tonight but these responses to Ken's posts just brought tears to my eyes.   Maybe because *once again* I see how loving the IHD family is!    It is just GREAT to be a part of this group!   Ken, I know you feel in a way & like others have said, hopefully you won't ever feel sick!      A :grouphug; for everyone here!   
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
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