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Author Topic: Anybody else get this?  (Read 2668 times)
RenallyChallenged
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« on: October 11, 2015, 02:52:16 PM »

Ever since I lost my transplant and started dialysis, I've been feeling like my throat and tongue are swollen. If a drink a little, it gets better, but it comes back after a while. I know, the first time I had kidney troubles back in 2005, my tongue started to swell up, but it went down. It seems to be happening more often lately, though. It's kind of scary and uncomfortable. Anybody else ever get this? If so, what do you do to make it go away?
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March 2008 - Kidney Failure due to Lupus Nephritis
September 2009 - Kidney Transplant
July 2015 - Back on dialysis

Currently training for NxStage Home Hemo.
cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: October 12, 2015, 06:07:31 PM »

Did your meds change when you lost your transplant? I had the tongue swelling, and turned allergic to just about anything. I used to be allergic to quite a lot of things before I had my dad's kidney, but the immuno suppressants suppressed the allergies too, so it could be the discontinuation of the immuno suppressants?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Rerun
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Going through life tied to a chair!

« Reply #2 on: October 13, 2015, 04:11:58 PM »

Mention it to your Neph when he/she rolls around.

Keeps us posted.           :cuddle;
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kitkatz
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« Reply #3 on: October 18, 2015, 12:48:10 PM »

It might be due to meds, or you may be allergic to something you are eating or drinking.  You can do an elimination diet to see if there is anything bothering you.
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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.

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nursey66
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« Reply #4 on: October 18, 2015, 04:08:44 PM »

Is it really swollen , or just feels like it is.  Sometimes anxiety can do this. I sometimes feel like I have a Hugh lump in my throat, it's so painfull. I had every test endoscopy, etc nothing found. Sometimes I think I am going to pass out.  Ice water helps. It usually comes on when I get stressed out.
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Riki
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« Reply #5 on: November 02, 2015, 11:21:00 AM »

I had that when I first got sick, back in 1991.. it was the first real symptom that I remember that told me something was weird... all the other symptoms seemed normal... like if you had flu or something like that... anyway.... in the days before I started dialysis, I felt like my tongue was a foot thick.. it felt like it filled my entire mouth, and I wasn't able to talk... what it turned out to be, was something similar to toxic shock syndrome.. the buildup of toxins from the kidney failure did some weird things to me... but the feeling of the thick tongue was the beginning of my body shutting down... I was rushed to the hospital, and started dialysis almost immediately after I was found in bed, in the fetal position, and unable to move or speak voluntarily... my saving grace was that the pediatrician who had been called in had seen it before, and she knew what it was... if she hadn't, I wouldn't have lasted the night... she gave me calcium and albumen, which made it so that I could move and talk... it was like the tin man being oiled.. I was able to move again... then I was put on a plane and sent to the nearest children's hospital.. that was around 2am.. and I started dialysis for the first time around 7am...
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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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