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Author Topic: Dialysis thought for the day  (Read 3794 times)
G-Ma
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« on: August 09, 2008, 10:07:46 AM »

I know we all have a random thought once in a while.  Let's share and try to help.

Dialysis is a lonely thing.  No matter how many people are on it or taking care of someone.  It is really very lonely.  How do I change this feeling or can I?
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Sluff
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« Reply #1 on: August 09, 2008, 10:43:55 AM »

Spend more time on IHD.  Otherwise I'm not sure what you can do to change the lonely feelings. The feeling I think stems from lack of knowledge to most people about this disease.  Before I was diagnosed I had no idea what dialysis was.  :grouphug;
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peleroja
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« Reply #2 on: August 09, 2008, 11:22:34 AM »

I knew what dialysis was, but I must admit I never knew that they don't remove the old kidneys during transplantation (unless they are necrotic).  As much as you think you know, there's always more to learn!  Sorry I can't help with your lonely feeling.  I'm one of those people who just looooooooooooooooves her independence and "alone" time.  In addition to IHD, do you have a renal support group near you?  If not, would you like to start one?  I've got all kinds of information about how we got The kidney Beings started.
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flip
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« Reply #3 on: August 09, 2008, 11:34:24 AM »

sitting in a recliner watching the olympics.....another hour and I'm out of here until Tuesday.
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That which does not kill me only makes me stronger - Neitzsche
G-Ma
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« Reply #4 on: August 09, 2008, 12:10:27 PM »

Thank you peleroja.  I may take you up on that...I think part of my loneliness is I have always worked in large call centers where there were so many people around all the time and now this alone thing is taking getting used to even though I always thought I enjoyed being alone...is there a massive confusion icon????  I have been checking for support groups and nothing except for transplant patients...well there should be others so will keep checking.  :rant;
Thank God for you guys/gals.
Logged

Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
G-Ma
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« Reply #5 on: August 09, 2008, 12:11:34 PM »

flip............... :sir ken; you have access to a computer in dialysis????????????????
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
meadowlandsnj
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« Reply #6 on: August 09, 2008, 04:25:50 PM »

I know we all have a random thought once in a while.  Let's share and try to help.

Dialysis is a lonely thing.  No matter how many people are on it or taking care of someone.  It is really very lonely.  How do I change this feeling or can I?

We're all here for you 24 hours a day, 7 days a week.   :grouphug;

Donna
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flip
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« Reply #7 on: August 09, 2008, 04:46:14 PM »

G-Ma, I have never been to dialysis without my laptop. Posting on IHD helps pass the time.
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okarol
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« Reply #8 on: August 09, 2008, 06:49:42 PM »



Jenna never had internet access at her dialysis center. She would have used the laptop more if they did.

G-Ma - do you ever visit with any other patients? I know the last thing you probably want to do is get there early, but if you do, walk around and say hello to at least 5 patients. Undoubtedly there are others who are feeling alone, and by reaching out, you may make a new friend. They might stop by on their way out to chat. Jenna did not want to interact with anyone, but I met some wonderful folks at her center. Good luck!
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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
flip
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« Reply #9 on: August 09, 2008, 06:56:56 PM »

I usually make the rounds, coming and going, chatting with all the other patients. I'll even give them a ride home if their bus is running late. It's almost like a big family.
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That which does not kill me only makes me stronger - Neitzsche
paris
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« Reply #10 on: August 09, 2008, 07:51:24 PM »

G-ma,  I would love for us to meet up for lunch someday.  Maybe somewhere between Raleigh and Charlotte.  After August is over, we should make definate plans.  A mini two person IHD meet up! 

Flip, you are such a good person.  You have a very compassionate heart.  :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
pelagia
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« Reply #11 on: August 09, 2008, 07:53:31 PM »

Getting to know the other folks in the clinic really helped Stephen. 
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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
G-Ma
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« Reply #12 on: August 09, 2008, 10:32:38 PM »

 :clap; that sounds GREAT paris...this fall...I love FALL and all the colors.
Logged

Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
monrein
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Might as well smile

« Reply #13 on: August 10, 2008, 04:09:22 AM »

I really look forward to my interactions with other patients and always do a walk past to say hi to everyone.  There's one older guy (well probably my age but he seems older) who is so thrilled when I say hi to him.  He doesn't speak english too well but he winks at me and a nurse said he looks forward to me getting there before he gets unhooked.  Last week one girl was having a terrible time with her needles and arm tension from having to stay super still. I spent a few minutes trying to soothe her as she was crying and her nurse was really busy at that moment.  I just rubbed her upper shoulder for a few minutes and she came to thank me afterwards and said it helped her mood (if not the pain).  I really believe that it's the little things in life that can make the biggest difference and all of us can be heroes in little ways every single day.
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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
G-Ma
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« Reply #14 on: August 10, 2008, 10:41:52 AM »

that's great monrein, however, both centers I have used did not wanting us walking through visiting...hi in passing was ok but stopping, not and NOT touching at all as a shoulder or something, so ...many times I would have liked to help someone by talking but was dissuaded from it.  I'm sure all centers have different rules and also different ways of applying those rules.
Logged

Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
monrein
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Might as well smile

« Reply #15 on: August 10, 2008, 03:37:24 PM »

Hmmm, isolate the prisoners so they won't spread the idea of revolt to the others.  What a crazy world.
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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
twirl
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« Reply #16 on: August 10, 2008, 03:48:11 PM »

dialysis thought of the day-------- sh-t I have to go today
non- D day-----------------Holy sh-t, I do not have to go today
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Mizar
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« Reply #17 on: August 10, 2008, 05:11:42 PM »

Twirl, I think Your Post said it very Eloquently.  :cuddle;
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G-Ma
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« Reply #18 on: August 10, 2008, 07:10:20 PM »

or...oh man I can't drink another thing....I hate that big time..not being able to pee.
Logged

Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
flip
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« Reply #19 on: August 10, 2008, 08:07:45 PM »

No dialysis today and none tomorrow. Got an early tee time in the morning. Some times I almost forget about dialysis and life seems normal again.
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That which does not kill me only makes me stronger - Neitzsche
Adam_W
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Me with Baron von Fresenius

« Reply #20 on: August 10, 2008, 09:36:18 PM »

Dialysis thought of the day: IT SUCKS (and blows)!
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
twirl
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« Reply #21 on: August 11, 2008, 10:10:00 AM »

Flip Bob----- you are so upbeat :clap;
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cherpep
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« Reply #22 on: August 11, 2008, 10:47:05 AM »

I went camping this weekend.  First time camping since I've been on dialysis.  What I liked was not having to make that trip to the restroom so frequently - especially during the middle of the night.  This was one time I was happy that I couldn't pee!!!
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G-Ma
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« Reply #23 on: August 11, 2008, 04:44:47 PM »

I want to clean house.............aarhhhhh running, screaming from that thought...I'll hold onto the chair until my brain cell gets in touch with its innerself again........ :rofl;  :rofl; well I guess that will be the 12th of never.
Logged

Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
flip
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« Reply #24 on: August 11, 2008, 06:13:18 PM »

I'm going camping this weekend and I can't wait. I'm sure my center will be raising hell at me since I also skipped the Saturday of the Chicago trip two weeks ago.
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That which does not kill me only makes me stronger - Neitzsche
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