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Author Topic: Low phosphorus a problem  (Read 4766 times)
pelagia
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« on: June 12, 2008, 10:27:01 AM »

My husband's phosphorus is still low a month after transplant (imagine that after all the struggles to keep it low while on dialysis...).  In addition to horse-pill sized phosphorus supplements they have prescribed something called "neutra-phos" that he mixes with juice.  He's not wild about another prescription.  Anyone have any good tips for getting phosphorus up other than eating yogurt, whole grains, etc?  He's been doing that pretty regularly.  How about a coke everyday?
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
donnia
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« Reply #1 on: June 12, 2008, 01:57:37 PM »

My transplant coordinator said it is common for us to have low phos. after transplant.... I am taking K-Phos.  I don't know yet if it is helping.  I do labs tomorrow and I will see how it looks.  Maybe cottage cheese ( I love dipping Doritos in cottage cheese..... shhhh... thats a secret.... Ranch doritos are the best!), drink more milk, etc....  I would like to know what you find out too... I am not crazy about taking  the K-Phos if I can get my phos. up naturally.  Thats 3 less pills than the 33 that I currently take a day.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
pelagia
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« Reply #2 on: June 12, 2008, 02:36:02 PM »

I know that coke isn't a great idea because of the sugar and the caffeine.  I eat my cottage cheese with Wheat Thin crisps! My husband is not a big cottage cheese fan - he likes things like peanut butter and jelly.  I have been baking a not so sweet cake for him that is made with all the things I think are high in phosphorus -- whole wheat pastry flour, wheat germ, wheat bran, nuts, and dry milk powder -- and that is not doing the trick yet (but at least it tastes good).  My husband's steroids definitely appreciate the cake.  I think his clinic may have told us that the kidney would eventually kick in with respect to regulating the minerals.  If anyone else knows how long that's likely to take, let us know!.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
KT0930
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« Reply #3 on: June 13, 2008, 07:39:58 PM »

I left the hospital with a "prescription" from the phys assistant to have pizza for dinner that night and drink two diet cokes everyday. I had already planned on the pizza that night and I found that caffeine-free diet coke works for pulling the phos up. It took awhile, but 6 weeks post-transplant, I was taken off the k-phos, and haven't heard the word phosphorous in relation to labs in probably three months.
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
pelagia
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« Reply #4 on: June 13, 2008, 09:56:17 PM »

Thanks for the tip.  I'm not sure he will drink diet soda, but pizza is always a big hit.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
okarol
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« Reply #5 on: June 13, 2008, 10:00:34 PM »

Foods high in phosphorus:

    *  Cheese
    * Chocolate
    * Cocoa
    * Fish, dried
    * Legumes
          o Chick peas
          o Munggo
          o Sitaw
          o Kadyos
    * Corn
    * Milk
    * Oatmeal
    * Meats
          o Bacon
          o Beef
          o Chicken
          o Heart
          o Kidney
    * Nuts-peanuts
    * Pinipig
    * Kalabasa
    * Misua
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
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cambonesegirl
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« Reply #6 on: June 13, 2008, 10:15:53 PM »

The same thing happened to me after my transplant. I was put on phospha-neutral for about two months. I was eating all types of high phosphorus foods but I guess that didn't seem to help because my wonderful kidney was flushing it out (no complaints here ;D)  I ate lots of nuts for phosphorus and magnesium. I was also magnesium deficient and was put on Mag-oxide.
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donnia
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me and my donor Joyce

« Reply #7 on: June 14, 2008, 12:49:16 PM »

I left the hospital with a "prescription" from the phys assistant to have pizza for dinner that night and drink two diet cokes everyday. I had already planned on the pizza that night and I found that caffeine-free diet coke works for pulling the phos up. It took awhile, but 6 weeks post-transplant, I was taken off the k-phos, and haven't heard the word phosphorous in relation to labs in probably three months.


****  I just looked at my husband and said "Honey, were having pizza and coke for dinner tonight"  ... this is what he did...... :yahoo;
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
KT0930
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« Reply #8 on: June 14, 2008, 02:04:01 PM »

Just a warning...all the high phos foods are also high in calories! I have gained around 15 pounds in the five months since the transplant. Now trying to lose it *sigh* I sure enjoyed gaining it, though!!!
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
pelagia
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« Reply #9 on: June 15, 2008, 05:37:57 PM »

Foods high in phosphorus:

    *  Cheese
    * Chocolate
    * Cocoa
    * Fish, dried
    * Legumes
          o Chick peas
          o Munggo
          o Sitaw
          o Kadyos
    * Corn
    * Milk
    * Oatmeal
    * Meats
          o Bacon
          o Beef
          o Chicken
          o Heart
          o Kidney
    * Nuts-peanuts
    * Pinipig
    * Kalabasa
    * Misua


I'm gonna have to Google some of these things.  I've travelled all around the world, but never heard of pinipig....  Okay, I looked it up -- it's immature glutinous rice.  I know that I'm not going to find this a the local Food Lion.  Maybe Trader Joe's!
He is already using the low phosphorus as an excuse to eat Oreos.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
cambonesegirl
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« Reply #10 on: June 17, 2008, 03:18:58 PM »

Just a warning...all the high phos foods are also high in calories! I have gained around 15 pounds in the five months since the transplant. Now trying to lose it *sigh* I sure enjoyed gaining it, though!!!

I too have gained 15 lbs  :( but now that I only take 5 mg of prednisone I haven't felt as hungry all the time like I use to.
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pelagia
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« Reply #11 on: June 17, 2008, 04:00:34 PM »

That's good news because I am having problems keeping up with the guys snacking -- with my husband on steroids and my 17 year old rowing everyday as part of a local crew club (and burns about 6000 calories a day when he is in training!!!!!).
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
angela515
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« Reply #12 on: June 19, 2008, 11:11:30 AM »

I also *had* low phosphors after transplant, and still have low magnesium and so I take Mag-Oxide twice daily. After about 5-6 months of having to eat high phosphorus foods and mixing the powder into juice mine became normal again, and I gained alot of weight... 15-20 lbs, and I am stuck craving all them foods. UGH
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
donnia
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me and my donor Joyce

« Reply #13 on: June 19, 2008, 11:31:03 AM »

Luckily I have not really felt all that hungry ... yet.... I am only 2 weeks post transplant and I am still trying to get rid of some of the excess fluids I had from the transplant.  I am currently 8 lbs over my "dry weight" the night before surgery.  I am consistently losing about 1 lb a day so I hope to get back down within about a week.  I sure hope I can stop taking the K-Phos in a few months!  I have joined the YMCA, although as yall know I can't go for a while.  I also invested in a Nintendo Wii and I am trying to get a Wii Fit.  I have been overweight for a while and I see this transplant as a new beginning for me so I am determined to lose some weight.  I have waaay to many things against me so I need to be proactive and help my situation (grandmother diabetic.... dad died of a mild heart attach at 54 years of age).  The drugs they have me on are going to already put me at a higher risk for diabetes and heart problems... so I am trying to combat that.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
angela515
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i am awesome.

« Reply #14 on: June 19, 2008, 12:48:56 PM »

I love my Wii. I am getting Wii Fitness as soon as it gets in our Walmart, it's ordered but not in yet. I love to play the bowling and tennis, the Tennis really wears me out and I am sweating after I get done playing it, yet it don't feel like a workout because your having so much fun! I hope you get yours soon.  ;D
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
pelagia
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« Reply #15 on: July 01, 2008, 05:01:32 AM »

Five weeks post-transplant my husband's phosphorus finally climbed into range  :bandance; :bandance; :bandance;

Here's a history:

3 weeks post-transplant  1.9 mg/dL
4 weeks post-transplant  2.0 mg/dL
5 weeks post-transplant  2.5 mg/dL
6 weeks post-transplant was drawn yesterday and we don't have results yet

He's been taking both the supplement pills (k-phos, 6x 250mg pills) all along, and they added the powdered phosphorus (neutra-phos) at about week four.

His magnesium has remained 1.2-1.3 mg/dL through the same period.  That's too low (needs to be 1.6 or higher).  He is eating loads of whole grains and beans already, so I am doubtful that he can elevate this with diet.  But, if anyone has any ideas, please send them my way.

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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
donnia
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me and my donor Joyce

« Reply #16 on: July 01, 2008, 08:36:03 AM »

Thursday will be 4 weeks post tx for me.  I am taking K-Phos with each meal.  My last lab said I was at 2.0 and my TC said "Are you sure you are taking your K-Phos with EACH meal".  So now he tells me to eat foods high in phosphorus..... I have been doing that!  Oh well.  We will see what my levels were yesterday.  Sure hope my phosphorus gets better quickly.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
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