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Author Topic: Stage 5 and going on transplant list  (Read 7137 times)
mamagemini
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It's all me.

« on: May 04, 2012, 11:21:44 PM »

So my blood work came back yesterday and I am now in Stage 5. I go to the transplant info/meeting on the 10th.
I was wondering what stage you all are in right now? If you are in Stage 5 are you working? Also, what meds do you take for nausea?
The vascular surgeon took a look at my fistula today and said everything looked great and sounds great.
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
KarenInWA
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« Reply #1 on: May 04, 2012, 11:47:36 PM »

I am in Stage 5 on my native kidneys, with a transplant that is currently recovering from a hematoma-induced injury from a month ago. My creatinine is slowly coming back down. Thankfully, I am finally feeling human again!

I slipped into stage 5 early last year, and started dialysis in April 2011. I worked through all of it, only taking 3 days off to get a fistula placed and then a chest cath placed (I procrastinated on the fistula - I didn't think my kidney function would take such a quick drop). I then had my live-donor transplant in November. I took time off from work through Jan 9th, where I returned PT, then was FT again by Feb 6th. This time around, the last day I worked was Apr 6th, had emergency surgery Apr 7th, and am hoping to return to work PT next week.

I work a desk job in front of a computer all day, so not a physically taxing job.

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 #2 on: May 05, 2012, 12:07:23 AM »

Sorry you are into ESRD. I am still in stage 4, for which I am grateful. Glad you got your fistula put in ahead of time too. Are you going to dialyze in the daytime or do nocturnal?
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Sue
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« Reply #3 on: May 05, 2012, 04:47:33 AM »

I am stage 5, I am still working, just part-time now, 22 hrs a week. I don't take anything for the nausea, mine usually wears off by mid morning. My fistula is maturing well :)
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cattlekid
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« Reply #4 on: May 05, 2012, 05:38:32 AM »

I am stage 5.  I have been working full time the entire time since I started dialysis in January of 2011.  The only time I wasn't working full time was the three weeks that I trained for home hemo, even then I worked half-days. 

I don't have ongoing issues with nausea.  My problem is restless leg, for which I take Requip and Qualaquin. 
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Southpaw
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« Reply #5 on: May 05, 2012, 02:53:42 PM »

I go back and forth from stage 4 to 5 and right now I am a 4.  It all depends if I sick (cold, flu etc.) My GFR recently went from 10 back to 16. My appetite is so-so but no nausea yet.  My fistula is only a month old, so it need to mature more. My fistula surgeon said I could stay at a where I am now for a while. GFR of 16. I know if i go back to a 10 my neph gets freaked out. :o
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mamagemini
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« Reply #6 on: May 05, 2012, 06:48:56 PM »

I am working full-time and a part-time job. It is starting to get really hard to last through the day but I do. The nausea is after every meal. It may be from GERD maybe?
I am going to do in-center hemo - hopefully in the evenings after work.
I forgot my nausea med so have to pick it up tomorrow. Zofran is what he prescribed me. Ever hear of it?
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
Southpaw
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« Reply #7 on: May 05, 2012, 07:34:05 PM »

Zofran is a good one.
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mamagemini
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« Reply #8 on: May 07, 2012, 11:13:59 AM »

Thanks!
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
MomoMcSleepy
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« Reply #9 on: May 07, 2012, 11:25:26 AM »

stage 5, gfr is 15.  I take Zofran, good stuff.  I have acid reflux and take 40 mg 2x day of Omeprozole, without it I puke in the morning, or if something smells bad, etc.  I have stomach trouble, too, though.  Otherwise not much nausea, some lately, though.

I work full-time.  I have thought about picking up a weekend job, too, but afraid I'd have to quit.  I sit most of the day at work..  I am wiped out at night a lot of the time, but I feel better if I go on the treadmill.

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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
Joe
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« Reply #10 on: May 07, 2012, 07:46:56 PM »

I'm stage 5 and working full time. But I do PD nightly. I have an RX for phenegran for nausea, but I haven't had to use it and haven't had a nausea attack in several months.
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mamagemini
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It's all me.

« Reply #11 on: May 08, 2012, 12:55:37 PM »

I can't wait until there is NO nausea! A day when I can wake up and go all day with no nap!  :clap;
I too have GERD and need Zantac every day now. Have any of you been to a transplant orientation?
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
kitkatz
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« Reply #12 on: July 01, 2012, 05:14:11 PM »

Stage 6-  Should be Beating the Odds and Living and Working with Dialysis over ten years!
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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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Jean
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« Reply #13 on: July 01, 2012, 11:53:49 PM »

There is a stage 6???? I have never heard of that before. Or are you pulling my leg??
Oh, wait, valuable lesson learned, never post until you read the whole sentence. Sorry about that Kit.

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One day at a time, thats all I can do.
mamagemini
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It's all me.

« Reply #14 on: July 06, 2012, 10:44:40 PM »

If you all don't mind me asking - what kind of CKD are you dealing with? I see some of you have it in your profille but some do not....just wondering cause I have FSGS(Tip Lesion)/Nephrotic Syndrome for over 7 years CKF.
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
MooseMom
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« Reply #15 on: July 07, 2012, 11:24:29 AM »

I was diagnosed with FSGS in Jan 1992.  It took all this time for me to finally reach stage 5.  I have no idea what variety I have.  I'm not sure there were such things as varieties in 1992. ::)
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
mamagemini
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« Reply #16 on: July 13, 2012, 08:20:04 PM »

well the  echocardiogram went well and my ekg was good. They want me to do a stress test...ugh. Hate those. Have to get my cholesterol checked this week too. Blood, blood blood.
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
jbeany
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Cattitude

« Reply #17 on: July 13, 2012, 09:28:46 PM »

well the  echocardiogram went well and my ekg was good. They want me to do a stress test...ugh. Hate those. Have to get my cholesterol checked this week too. Blood, blood blood.

When I was first diagnosed, I was averaging 4 appointments a week with various docs, and they were all taking blood each time, and I was already drastically anemic.  Still love the doc who said, "You keep getting paler."   ::)

If you all don't mind me asking - what kind of CKD are you dealing with? I see some of you have it in your profille but some do not....just wondering cause I have FSGS(Tip Lesion)/Nephrotic Syndrome for over 7 years CKF.
I was diagnosed with FSGS in Jan 1992.  It took all this time for me to finally reach stage 5.  I have no idea what variety I have.  I'm not sure there were such things as varieties in 1992. ::)

I think she just meant was it diabetes, injury, FSGS, etc...
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mamagemini
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« Reply #18 on: July 16, 2012, 01:23:40 PM »

Blood work gfr 10 creatinine 4.86
Bun 10 on my way...
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
MooseMom
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« Reply #19 on: July 16, 2012, 03:07:29 PM »

You get yourself on that tx list asap.  Sounds like you're doing just that, and it also sounds like your heart is in good shape.  That makes all the difference.

Your goal now is to keep yourself as healthy as possible for surgery and post-tx protocols.  It takes work to STAY on the list and to remain as fit as possible.  And remember, you have the final say on when to initiate dialysis.  Ultimately, it is YOUR decision.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
mamagemini
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« Reply #20 on: July 16, 2012, 04:17:14 PM »

That's what I thought. I don't feel like I need it yet.  Just nausea every day.
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
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