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Author Topic: I had forgotten what pain is  (Read 3678 times)
pagandialysis
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« on: November 17, 2011, 06:49:38 AM »

Today they were putting me on and there was a little pressure in the return needle like always which I have come to think of as pain instead of the annoyance it really is. Then after the machine started there was a burning pain that made me shoot up in my chair and bite my tongue so i wouldn't yell out. I had forgotten it could hurt that badly. I put up with an annoying pressure every treatment and I guess I had just associated that with real pain.

 :(
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Dining on Dialysis - www.diningondialysis.com
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Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
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boswife
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us and fam easter 2013

« Reply #1 on: November 17, 2011, 07:37:42 AM »

Dang it,,, thats going to put a damper on your willingness to go in next time huh.    Sorry you had to hurt  :(    so were you infultrated?   
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
pagandialysis
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« Reply #2 on: November 17, 2011, 07:52:39 AM »

I hope not....I REALLY hope not.
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Dining on Dialysis - www.diningondialysis.com
-------------------------------------------------------------
Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
Hypertension (Under Control)
monrein
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« Reply #3 on: November 17, 2011, 12:29:20 PM »

You'd know if you were infiltrated...bruising, swelling, machine not running.  It sounds as though you might be sticking through or resting on an irritated nerve ending and caffeine can make this more painful.  If you use sharps and laddering technique then hopefully an alternate site next time will help.  If buttonholes, perhaps it's time to start a new one.  I had one on a nerve but I got used to the sensation and it was only while I was getting the needle in the tunnel.
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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
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« Reply #4 on: November 17, 2011, 04:10:24 PM »

Oh, BAH!

There is pain and there is pain! So sorry!

I hope next time is better.  :cuddle;

Aleta
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Riki
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« Reply #5 on: November 17, 2011, 04:16:57 PM »

For me, the burning is usually followed by an immense amount of swelling and brusing.

One of my sites is really close to a nerve, and the needle hits it from time to time.  I got used to after the first few times.
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Dialysis - Feb 1991-Oct 1992
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dialysis - April 2001-May 2001
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sullidog
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« Reply #6 on: November 17, 2011, 07:17:07 PM »

Why do you have pressure on a return? that doesn't sound normal to me unless the needle is in wrong.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
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« Reply #7 on: November 18, 2011, 04:38:25 AM »

When I see someone in my dialysis center cringe when they get poked or hear stories like this it gives me second thoughts about getting a fistula, but I'd prefer some pain to never getting a shower again with a catheter or getting an infection or never going into the water again.   :waiting;
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« Reply #8 on: November 18, 2011, 06:19:28 AM »

Whamo, I have a PD cath and shower every day. And I've been told some swimming is ok (I just need to get the specific list of what I can and can't get into).
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tbarrett2533
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Me licking my kidneys from my birthday kidney cake

« Reply #9 on: November 18, 2011, 07:55:45 PM »

OMG I do NOT miss HEMO
and my at least 4 infiltations in less than 4 four months

please if you can do PD, do it!!

I pray that I never have to go back!!!  :pray;
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CKD since: 1981
9.22.10: Catheter surgery
9.23.10: Started in center Hemo
10.06.10: Fistula surgery
12.02.10: Started using right upper arm Fistula (15 gauge)
12.30.10: Catheter Removed
07.01.11: Laparoscopic CAPD Catheter insertion
07.29.11: Started CAPD, 2000ml, 4 exchanges (Baxter)
08.15.11: Started filling with 1500ml (instead of 2000ml), 4 exchanges
08.21.11: Back to 2000ml fills, 4 exchanges (3-2.5% & 1-1.5%)
10.12.11: 2000ml fills, 4 exchanges (3 1.5% & 1-2.5% overnight)
11.08.11: Transplant list

Dialysis works for me, I don't work for dialysis!
It's my body, my health!!
fearless
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« Reply #10 on: November 18, 2011, 08:05:51 PM »

I've been on hemo for 3-4 weeks.  My fistula was ready when I started, but I was infiltrated on the first attempt to stick.  The nurse kept grinding the needle around trying to find a path.  I pulled off the tournaquet and said "we're done"  (I still have my PD catheter)  So, then they insisted that i get a neck catheter, because apparently Medicare doesn't like you to just keep trying at the fistula until it works and then you get off PD.  You're either on hemo or you're on PD, and they're adamant about that.  I understand that some of it has to do with not being able to keep optimal care for your PD catheter if you're on hemo (I don't know why - it was never that involved when I was on PD - I just saw the nurse and doc once a month!?)
So, then I used the neck catheter for the next couple weeks, and today they tried again.  It seemed to work for a couple hours, then, voila:  HUGE infiltration - SO PAINFUL!  And the nurse was stupefied.  She had taken her time getting over to me after she saw I was infiltrating, because she couldn't believe it could be so bad.  So: 2 tries.  2 infiltrations.  This really really really really SUCKS!!!
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tbarrett2533
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Me licking my kidneys from my birthday kidney cake

« Reply #11 on: November 18, 2011, 09:11:08 PM »

I've been on hemo for 3-4 weeks.  My fistula was ready when I started, but I was infiltrated on the first attempt to stick.  The nurse kept grinding the needle around trying to find a path.  I pulled off the tournaquet and said "we're done"  (I still have my PD catheter)  So, then they insisted that i get a neck catheter, because apparently Medicare doesn't like you to just keep trying at the fistula until it works and then you get off PD.  You're either on hemo or you're on PD, and they're adamant about that.  I understand that some of it has to do with not being able to keep optimal care for your PD catheter if you're on hemo (I don't know why - it was never that involved when I was on PD - I just saw the nurse and doc once a month!?)
So, then I used the neck catheter for the next couple weeks, and today they tried again.  It seemed to work for a couple hours, then, voila:  HUGE infiltration - SO PAINFUL!  And the nurse was stupefied.  She had taken her time getting over to me after she saw I was infiltrating, because she couldn't believe it could be so bad.  So: 2 tries.  2 infiltrations.  This really really really really SUCKS!!!

TRUST me when I tell you, that I know EXACTLY what you are going through!!!
I don't understand why if you still have your PD cath why you are not doing PD?? is there something going on why you cant??
and if your fistuall is only 3-4 weeks old (if thats what I am reading here, or am I misunderstanding??) than I think its way to soon for them to be sticking you with two needles, one yes and they should be sticking you with the smallest one at your unit!!!
shoot even the BEST virgin fistulas take 8 weeks before you should use them....... remember just like you did  :2thumbsup; you are the boss... this is your body and its your health and you have every right to stop them from doing anything to you!!!!!! so I commend you for doing it!!!!
 :cuddle;
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CKD since: 1981
9.22.10: Catheter surgery
9.23.10: Started in center Hemo
10.06.10: Fistula surgery
12.02.10: Started using right upper arm Fistula (15 gauge)
12.30.10: Catheter Removed
07.01.11: Laparoscopic CAPD Catheter insertion
07.29.11: Started CAPD, 2000ml, 4 exchanges (Baxter)
08.15.11: Started filling with 1500ml (instead of 2000ml), 4 exchanges
08.21.11: Back to 2000ml fills, 4 exchanges (3-2.5% & 1-1.5%)
10.12.11: 2000ml fills, 4 exchanges (3 1.5% & 1-2.5% overnight)
11.08.11: Transplant list

Dialysis works for me, I don't work for dialysis!
It's my body, my health!!
fearless
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« Reply #12 on: November 20, 2011, 04:48:56 PM »

tbarrett2533

Hi!  Depending on the development of your disease, PD may work for you for a little while or a long time.  But most people can't have optimal dialysis for more than 5 years.  I was lucky to get 8 years, but by the end it was lengthy and not effective enough.
My fistula has been in place for about four months.  It's a great fistula, but apparently not conducive to good treatment from the staff at my clinic!  It's time for me to get trained for home hemo, so i can stick myself and go back to some of the freedom of PD!

I wish you all the best and a long time on PD (of actually a short time if you're on the transplant list!)
cheers!
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pagandialysis
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« Reply #13 on: November 21, 2011, 10:30:23 PM »

Here is a quick set of answers for all of you:

I will not have a button hole as it creeps me out.

I wont do PD because I am always alone.

and maybe there is pressure on the return because its pushing blood into the vein?

That's all for now.
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Dining on Dialysis - www.diningondialysis.com
-------------------------------------------------------------
Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
Hypertension (Under Control)
tbarrett2533
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Me licking my kidneys from my birthday kidney cake

« Reply #14 on: November 22, 2011, 11:46:47 AM »

Here is a quick set of answers for all of you:

I will not have a button hole as it creeps me out.

I wont do PD because I am always alone.

and maybe there is pressure on the return because its pushing blood into the vein?

That's all for now.


 :twocents;
pssst... I am always alone too, with the exception of my BF but he works all day long (I do CAPD do I do my exchanges during the day) and the most he does for me is carry my 25 pound boxes of soloution up the steps for me and well I really don't even need him to do that for me, I just don't lke to carry heavy objects.
The reason I choose PD was b/c I did not need a care partner and well In-center Hemo was making me more sick and than better  ;D

 
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CKD since: 1981
9.22.10: Catheter surgery
9.23.10: Started in center Hemo
10.06.10: Fistula surgery
12.02.10: Started using right upper arm Fistula (15 gauge)
12.30.10: Catheter Removed
07.01.11: Laparoscopic CAPD Catheter insertion
07.29.11: Started CAPD, 2000ml, 4 exchanges (Baxter)
08.15.11: Started filling with 1500ml (instead of 2000ml), 4 exchanges
08.21.11: Back to 2000ml fills, 4 exchanges (3-2.5% & 1-1.5%)
10.12.11: 2000ml fills, 4 exchanges (3 1.5% & 1-2.5% overnight)
11.08.11: Transplant list

Dialysis works for me, I don't work for dialysis!
It's my body, my health!!
Riki
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« Reply #15 on: November 22, 2011, 12:26:06 PM »

Return needle.. the venous side??  if it's just a little pain or pressure, it could be that the needle is up against the side of the vessel.  If you pull back the needle, just a smidge, it pulls it away from the side of the vessel and it doesn't hurt anymore.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
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HD - Dec 2008-present
pagandialysis
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« Reply #16 on: December 03, 2011, 08:58:01 PM »

I just ice it and forget it.....that sounds like an infomercial.
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Dining on Dialysis - www.diningondialysis.com
-------------------------------------------------------------
Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
Hypertension (Under Control)
Riki
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« Reply #17 on: December 03, 2011, 09:19:57 PM »

I'm lucky that my nurses are really good at needling me.  It's been a month or more now since I was infiltrated.  I have veins that like to roll.  Before I was on hemo, bloodwork was a nasty chore, cuz it usually took at least 2 sticks to get the vein
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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