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Deanne
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« on: September 08, 2014, 09:00:07 AM »

Has anyone else lost their appetite six months post-transplant? I wasn't hungry immediately after transplant for a while, but then I was eating more or less normally. Then I started wanting only carbs - cookies, brownies, ice cream - yum, but I still got hungry. Lately, I'm just not really very interested in eating. My labs are great. Creatinine at 90, BP last week at the neph's office was only 95/65-ish. No chills, no fever, no sign of infection. Energy has been low, but it's varied a lot since transplant.

I've had a lot of diarrhea and stomach cramps since transplant because of the magnesium and phosphorus supplements. Could the loss of appetite also be because of the supplements? I'm not sure if I should be worried or not. My weight has been up about 10 pounds and in the past, it seems like my appetite had dropped if my weight went up. It seemed like a self-regulating thing for me. All the rules have changed though, so I don't know if that's all it is.
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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
jeannea
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« Reply #1 on: September 08, 2014, 09:29:44 AM »

Appetite is a funny thing. There are so many reasons it changes. I agree that when supplements or CellCept mess up your intestines your appetite can change but it won't for everyone. Is this a sudden change? Are you nauseated when you eat? I think you should tell your transplant coordinator. Changes in appetite can be a sign of other problems.

Magnesium supplements are a pain. My mag is always low. I take a more expensive brand called Slow Mag. It's coated so it's kinder to the body. There could be a brand that's better for you. And I despise the phosphorus supplements. They're all gross and stomach turning. Maybe if you ask you could try stopping those and eating lots of high phsphorus foods.
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lainiepop
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« Reply #2 on: September 08, 2014, 12:57:03 PM »

My appetite was lost at about 4months post tx and I had bouts of diarreah too, it was the cellcept, all went back to normal when they put me on azathioprine instead of the cellcept, hungry again, and no diarreah. Then once they took me off steroids my appetite went down but in a good way, as in I wasn't eating every time I went into the kitchen lol xx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
SooMK
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« Reply #3 on: September 09, 2014, 06:59:35 PM »

I had no appetite for like the first month. After that my appetite has been fine. Trying to eat consistently healthy seems more difficult than before transplant. I'm just about at the 6 month mark. I'm on tacrolimus and myfortic. I have noticed the last few weeks that the afternoon dip in energy can be brutal. I don't know what that's all about. I wonder about those supplements you're taking. Ick.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Deanne
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« Reply #4 on: September 10, 2014, 09:05:48 AM »

I've notice similar things SooMK. The first couple of months, no appetite, then it was fine, but hard to eat healthy. Then harder and harder to eat healthy, and now I don't seem to eat as much of anything. I made two scrambled eggs for breakfast, took a couple of bites and lost interest. I made myself eat half of it. I'll probably go make some popcorn soon.

I've had the same dip in energy and it's been very hard to get moving on weekends unless I know I'm meeting friends to go walking. Once I'm out, I'm able to keep going. I spent a good piece of last weekend plopped on the couch trying to get motivated.

I'm hoping this is all just another phase that will pass soon. Otherwise, I'll call my neph. I've gotten hungry a couple of times the last couple of days anyway. I just lost interest after I started eating something.
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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
MooseMom
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« Reply #5 on: September 10, 2014, 09:31:31 AM »

Most post tx patients seem to experience a surge in appetite, presumably due to prednisone.  So if your appetite is practically non-existent, I suspect the supplements.  I don't take any supplements other than the usual calcium and multi-vitamin, and I've not seen a reduction in appetite.

Being properly nourished is important for everyone, especially for those of us who are fighting health issues.  Loss of appetite is a problem that really needs to be solved.  Not getting enough calories means you won't have enough energy because that is what calories are...energy.

If a few more weeks go by without improved appetite, calling your neph wouldn't hurt.

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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."
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