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Author Topic: Tall, Slender Woman with Cankles  (Read 5285 times)
KarenInWA
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« on: July 08, 2010, 09:03:18 PM »

Well, Summer finally hit Seattle this week, and with it, a new medical problem for me.  I wore capris and sandals all day the other day, and was out walking with a friend telling her how much I like these sandals except for the fact that they're tight!  We both look down and see my glorious cankles!  No wonder the sandals were uncomfortable  :o !   I'm in stage 4 CKD, no D,  no fluid restrictions, and pee normally. 

I called the nurse line of a local hospital, who advised me to elevate my feet and drink plenty of water.  So, today I dutifully drink over 76 oz of water (yes, I was keeping track) and on a walk with the same friend, I have the same cankles (different pair of sandals, though..)

I don't want this visual reminder of my failing kidneys.  Also, I'm supposed to be going on a road trip to AZ and back later this month.  Does this mean whenever the nice hot weather hits, I'm going to have the ankles of an old woman ???  WTF ??? ???


Oh, and to top it off, my eyelids are all puffy, too.  Yeah, I'm a real beauty these days.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Jean
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« Reply #1 on: July 09, 2010, 12:00:04 AM »

Call your neph and they will probably give you some lasix to get rid of that.
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KICKSTART
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« Reply #2 on: July 09, 2010, 01:24:17 AM »

Drink plenty of water?  you might as well have just poured it on your ankles ! Water tablets and LESS fluid intake . :2thumbsup;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
*kana*
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« Reply #3 on: July 09, 2010, 04:25:56 AM »

Drink plenty of water?  you might as well have just poured it on your ankles ! Water tablets and LESS fluid intake . :2thumbsup;
That was my thought also.........why more water vs less?  I don't get it.  I honestly would not follow that advice at all.   

Are you taking Norvasc?  Lots of people near failure are put on Norvasc and that will make your ankles swell.  The puffy eyes are due to RF and will mostly subside when you begin D. 
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

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Nx Stage-current tx
Diagnosed with SEP 2014
KarenInWA
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« Reply #4 on: July 09, 2010, 05:15:57 AM »

No, no Norvasc.  I don't even know what this.  As for drinking more water when your ankles are swelling, that is something that I have heard of before.  When you're dehydrated, your body tends to hold onto water (especially in heat) which then causes the swelling.  Drink more water and it flushes it out (for lack of a better medical term...).  However, that didn't seem to work for me.  And I made *plenty* of trips to the bathroom yesterday, too!
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
KICKSTART
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« Reply #5 on: July 09, 2010, 10:22:45 AM »

Drinking water in that situation is for 'normal' people ! not for renal patients.
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
paris
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« Reply #6 on: July 09, 2010, 11:06:41 AM »

I was told to watch fluids and was put on lasix.  You need something to help pull that excess fluid off.  It can collect in other areas that aren't as visable and could be harmful.   My ankles are the first thing to swell and it reminds me to do all the things I can to help them.   Talk to the doctor about a diuretic (lasix), it will make a big difference.   
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Deanne
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« Reply #7 on: July 09, 2010, 12:06:04 PM »

I should've read your thread before starting my own! We could be twins, I think.
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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
KarenInWA
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« Reply #8 on: July 09, 2010, 01:44:10 PM »

Drinking water in that situation is for 'normal' people ! not for renal patients.

My neph has not yet put me on fluid restrictions.  I still pee "normally", and more so when I drink a lot anything.  This only started with the recent heat wave where I live.  We last had  warm days here in Sept of 2009.  It's been a long cold spell!

However, I will be seeing the dr today after work.  Not a neph, but my primary clinic is up to date on my kidney issues.  My neph is on vacation this week, but they will notify him of what is going on, and I will call next week to confirm.  Also, I see another neph on Wed, so I will be bringing this up to him as well.   I hate being unhealthy in what should be a healthy body. :(

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Trikkechickk
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« Reply #9 on: July 09, 2010, 02:11:09 PM »

Karen,

See also my reply under Water Balloon. 

For years I would swell up going south (Florida, Carribbean, etc).  Low albumin can cause water retention.  So can dehydration.  I am not fond of meat so now I subsitute Whey Protein (100 mgs Phos = 1 binder(Phos-lo).

I still pee, I maintain a 4.3 Albumin level.
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LoneHighway
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« Reply #10 on: July 10, 2010, 07:23:12 PM »

You might ask your doctor about prescription compression stockings. They are knee high and do a good job of keeping your ankles normal. You will have to figure out how long you can do without them in a day before the problem comes back.
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KarenInWA
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« Reply #11 on: July 10, 2010, 11:45:41 PM »

You might ask your doctor about prescription compression stockings. They are knee high and do a good job of keeping your ankles normal. You will have to figure out how long you can do without them in a day before the problem comes back.

The dr I saw did offer to write me an Rx for that, but, I'll be honest, there is no way in HELL I'd wear those, especially in hot weather.  I know I have the kidneys of a much older person, but that doesn't mean I want to start wearing "old people" socks.  *Especially* in hot weather.  Now that the temperature has gone down a bit, my swelling has gone away.  I can see my ankle bones again, and my eyelids!

Also, my heart and lungs sounded clear, so no scares there.  They did test my albumin, and were going to call if it was low, but so far I have not heard from them.
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Sunny
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Sunny

« Reply #12 on: July 11, 2010, 12:41:42 AM »

I retain water too. It sort of spreads out everywhere: my eyes, cheecks, thighs, hips, abdomen, but NOT my ankles. When I mention it to my doctor she looks at my ankles and proclaims me "fine" since I don't look as bad as most of her patients. It is a rare day when I will wear clothes that show my legs.
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Sunny, 49 year old female
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LoneHighway
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« Reply #13 on: July 11, 2010, 08:37:47 AM »

The technology has improved greatly, they don't look like old people socks. In fact they can look downright sexy! Do a search on Sigvaris Ever Sheer, you will be surprised. ;)
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KarenInWA
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« Reply #14 on: July 11, 2010, 10:45:33 AM »

The technology has improved greatly, they don't look like old people socks. In fact they can look downright sexy! Do a search on Sigvaris Ever Sheer, you will be surprised. ;)

So far, this only happens in weather where it's too hot to wear socks.  Still, not an option.  I tend to wear long sundresses or capris when the weather is warm, and sandals.  Socks of any sort will kill the look, and, more importantly, make me highly uncomfortable (read: hot) to boot.  Just not gonna happen.

What I'm more concerned about is the swelling around my eyes.  Can ones eyes swell to the point where it harms vision?  As it is, I can now imagine what it must be like to have eyes so swollen one cannot open them.  If that happens to me, I swear, I am done.

Oh, and Sunny, I am like you, I rarely wear anything that shows my legs, too.  That's why I only wear *long* dresses or capris.  My legs are horrendously ugly, white, with purple/pink bumps and veins.  An ugly sight to be sure. I've always wanted to know what it is like to have beautiful legs to show off, as I've had this problem for as long as I can remember.  Ugh.

KarenInWA
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Fox_nc
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« Reply #15 on: July 11, 2010, 07:22:34 PM »

If you are having that much swelling I would get a full round of labs done. Albumin is nice to know, but where is your creatine at?

A little Lasix may fix it, but for me, the kind of swelling you are describing is never a good thing. I really think labs are the best way to go - make someone order a FULL set of labs - soon! The sooner you know what's going on, the sooner you can correct it.

I stress the full labs because my primary neph was out of town once and getting anyone to check my labs was like pulling freaking teeth! By the time he got back I had to be hospitalized.  He, uh, corrected the problem of no one ordering my labs, but it was a good lesson for me, as the patient, to trust myself that I know when something is going on and get whatever tests done that I need to get done.
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Being normal is not necessarily a virtue. It rather denotes a lack of courage. -- from the movie Practical Magic
KarenInWA
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« Reply #16 on: July 11, 2010, 09:15:59 PM »

Hey Fox_nc!

That's the funny thing, I actually had a pretty full lab work-up done on Friday morning for my epo shot!  Normally, my neph just tests K and hematocrit, but he ordered a more complete one that had my creatinine at 2.5, which it has been at before.  (I wish it was more the size of a Geo Metro engine, instead of a 2010 Mazda3, but that's beside the point...)  The doc that I saw at my walk-in clinic called the hospital where I had the labs done and ordered albumin to be added to it.  I was supposed to get a phone call if it was not normal, but I never did hear anything.  I will call and confirm that tomorrow.

Happily, the temperature has gone down, and so has my swelling.  But, I love hot, summer days and don't want this to be my new reality.  And "hot" here is "normal" for other places!

KarenInWA
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
RichardMEL
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« Reply #17 on: July 17, 2010, 05:29:10 AM »

Just on this. I was listening to the latest edition of Kidney Talk (http://www.rsnhope.org/programs/kidney_talk3.php) entitled "Back on Dialysis Again: Surviving the Transition of Losing a Kidney." In the later parts of the podcast the discussion turns to symptoms of decreasing kidney function. Apart from a talk about Gout, there's some talk about ankles swelling and fluid retention. Apart from  salt being a major factor, they also discussed moving to a very low protein diet, and avoiding red meats - and that sometimes eating the "wrong" thing immediately results in swolen ankles and the like. I actually never had that problem myself, but it was interesting listening - you may want to check it out.
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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!
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