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TOPIC:   Nearly 12 Years Out Now From Transplant 


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CBEVNOW
CBEVNOW's Photo Posts: 6,281
5/14/12 4:14 A

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People on Dialysis and with transplants do have a different diet just as we with CKD each of us has different needs. For instance dialysis patients need more protein then those of us in stages 1 through 3or some times the beginning of 4.
I my self am in stage 3 i do take coconut oil as i have no problem so far with potassium but i watch my intake of my potassium.
In all 5 stages we are each individuals with individual needs, each of us has different needs, but basically we are learning to take care of our Kidneys. My needs are different from Jen's, as well as to Claire's. But we learn about all of these things so we can help each other out. YET-- our needs are some what alike also because we are taking care of our Kidney's. I hope this makes since.
As far as the aluminum , its true, actually using aluminum foil is not good for us. Cooking with it is not good for us or for that matter any one. Things that are not organic are full of chemicals and the shampoo we use has chemicals it goes into our body. There are hundreds of things that you will find amazing as to what is in them and they go into our body.Things from tooth paste, make up, lotions, powders, water, . Look what soda pop does to our body's and how many of us drank this before we knew we had CKD. I drank Diet Coke, one of the worse,with its splenda in it , yek i think of all the junk i use to put in my body and look what happened .
Shawn i hope you stay with us, but if you feel your needs are else where we will understand.
Wishing you the best.

Caroline

Im starting to take control of my life today. I will take care of me, love my self., be good to my self, I am strong, i can do this.


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LIFE-FAITH
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5/13/12 6:45 P

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Shawn - I am not sure what you are looking for in our team - we share info on how to take care and love our kidneys - we all have different diseases that affect our CKD, but and too we have those on our team who have been donors - and I think we have a few who have been the recipient of a transplant all learning how to best care for their kidney/kidneys.

Learning how to take care of our kidneys (or love) is our goal on this team.

I am sorry if you feel we are not the right team for you.
Take care and God Bless you.
Jean


Edited by: LIFE-FAITH at: 5/14/2012 (08:35)
Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA

Time Zone is Eastern Time Zone: S.E. Michigan

"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)


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-SHAWN-
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5/12/12 11:13 A

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My grandson does have a dietician who works in nephrology. She is pleased with him having this (coconut) fat. All oils need to be limited, no matter who you are or your condition. Bodies need fat.
When he is ill, I make him electrolyte drinks, I will use a salt substitute, which is pure 100% food grade (bio-available) potassium, (which is standard in an electrolyte drink). Of course I could leave that out and would if his levels were out of optimal range, but they never have been.
He is tube fed, so his diet is optimal at all times.

I think this is the wrong team for us, I *think* diet after transplantation is different. He was never in a 'years' battle with kidney disease, his kidneys were removed soon after he was born. His diet back then was pure breast milk and that didn't change for quite some time.

Good luck!







LIFE-FAITH
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5/12/12 9:49 A

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Coconut Oil is HIGH in potassium, if you need to limit it - yes it should be avoided.

Shawn you can post your post in the Loving Our Kidneys forum or the Information forum.

There is so much info in the informational forum that I will look up the links to the dialysis diet - which I have posted here for those of us with CKD.

I follow this diet to maintain my CKD along with exercise, and drinking water 99% of my day. I drink one 8oz serving of cranberry juice a day. I never touch pop or any other juices.

Be back in a bit...

Edited by: LIFE-FAITH at: 5/12/2012 (10:38)
Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA

Time Zone is Eastern Time Zone: S.E. Michigan

"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)


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CLAIRE_LEFT_SP
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5/10/12 9:22 P

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I'm gonna punt this to Jean - she's got threads about what foods we should limit or avoid due to their potassium or phosphorus levels. (Coconut is high in potassium.)

Have you joined any of the kidney disease web sites? DaVita.com has a bunch of nutrition support tools. Also, the American Assoc of Kidney patients has the "AAKP Nutrition Counter" book that gives the amount of sodium, potassium, phosphorus, protein, and calories for just about any food you can think of. (aakp.org)

Any of us lucky enough to have the services of a renal dietician have probably been given a daily target for protein, sodium, pot, and phos. And each will be different based on our blood serum levels, dialysis or transplant status, stage of kidney disease.

Jean! Oh she who posts the most! Can you point her at your food threads and favorite web tools? C, I know you take the aakp book with you everywhere - what other things do you use to help you track your diet?

PS I have a kidney diet app on my iPhone, too.

Claire
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Those who think they have no time for a healthy lifestyle will sooner or later will have to find time for illness.


-SHAWN-
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5/10/12 5:07 P

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"Don't know if we absorb much coconut topically; it's on our do not eat list."
Who is "our" and why is coconut oil a no no for them?

Anything you put on your skin is absorbed into the body.



CLAIRE_LEFT_SP
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5/10/12 4:42 P

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Whenever a new topic comes up, we try to put it in a separate thread so anyone looking for that topic can find it. (we have a forum dedicated to this kind of sharing.) So, here are some of the titles I can imagine for those threads - based on what the research shows, of course.

Heavy metals can cause kidney failure
Heavy metals and transplants
Symptoms of heavy metals over exposure
Products/foods containing heavy metals
Impact of heavy metal ingestion
All about kidneys and heavy metals

Sometimes we have to make hard choices: I use prescription anti-perspirants and absolutely cannot leave the house without it if I want to be within 10 feet of anyone.

Don't know if we absorb much coconut topically; it's on our do not eat list. I slather myself with Shea butter every day - love the stuff!

Claire
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Those who think they have no time for a healthy lifestyle will sooner or later will have to find time for illness.


-SHAWN-
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5/10/12 4:05 P

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A forum post on ?? What do you want the post title to be?

I no longer use probably 95% of what I used to use before my grandson came.

I was thrown into the deep end... It was sink or swim, and I was sinking here and there. I had to learn a lot fast, and keep it to memory.

Once his labs were off, and the doc wanted me to bring everything I feed him into her office, I told her "NO" she said they had to figure out what was effecting his labs, they were even going to have the pharmacy investigated for the possibility of delivering erroneous drugs (his transplant meds)... We finally got our answer, it was the SHAMPOO! I shave his head, so he has little hair to shampoo, it's only on for a second maybe twice a week... This is how I know what we put on our bodies is just as important as what we put into our bodies.

I use African Shea butter goo.gl/CTPhJ (Mine wasn't creamy like it says on the link page, that's new, mine is stiff, can't wait to get the creamy stuff) and coconut oil on both of us, I wouldn't touch an over the counter lotion such as Oil of Olay or whatever.

He can't have grapefruit juice either, it interferes with meds, not just meds for transplant patients but many types of meds, for instance statins and grapefruit juice together can actually cause kidney failure.

It's unbelievable the things I've learned over the past two and a half years since he arrived.

If it's a choice between stressing my kidney's or stinking, I'll choose stinkyemoticon
I know this is true because I recently found out my "don't pee your pants" pill causes serious memory problems and I've yet to find out if it's reversible, so I'm using pads now. I absolutely hate having to use them, but gee, the pills take a whopping 10 years from you mentally, well known in Australia, but that little tidbit has pretty much been kept from US citizens. Those drug companies need to keep making profits...grrr!
emoticon

Sorry I'll step down from the soapbox...he he he



LIFE-FAITH
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5/10/12 3:33 P

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I have heard of this but never pursued it.

Shawn do you mind making a forum post on the info you have? I will sticky it.
If you do not want to I understand - just let me know.
Thank you.
jean

Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA

Time Zone is Eastern Time Zone: S.E. Michigan

"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)


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CLAIRE_LEFT_SP
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5/10/12 3:29 P

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Huh. Never thought to worry about heavy metals, but it makes total sense. We should open some separate threads on this and share some research. (i'll add it to my to-do list for SP, but it'll be a couple weeks before i can get to it since I'll be out of town.) It'll be interesting to learn the symptoms of over exposure so we know if we should be pounding on - ahem, asking - our docs for blood tests.

Claire
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Those who think they have no time for a healthy lifestyle will sooner or later will have to find time for illness.


-SHAWN-
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5/10/12 2:47 P

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Aluminum is hard on the kidneys, even healthy kidneys.
There are plenty of aluminum free products, I use THAI deodorant goo.gl/UJtB7 and my grandson uses Tom's. Same with everything that goes on or into the body, I check every label, even my baking powder is free of it ;-)

There are many substances that can build up in the kidneys such as: mercury, nickel, lead, arsenic, aluminum, cadmium and all can cause kidney congestion and kidney damage.

* Standard blood tests for kidney function are often normal.



CLAIRE_LEFT_SP
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5/10/12 2:21 P

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I've never heard about staying aluminum free. You don't want to be around me without that type of deodorant! What have you been told about this issue?

Claire
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Those who think they have no time for a healthy lifestyle will sooner or later will have to find time for illness.


LIFE-FAITH
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5/10/12 2:11 P

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Yes, but I always say: I am still learning - and I am... lol

We all have different experiences with our doctors, we all have different issues which affect our CKD.

I hope you are finding encouragement and helpful info on our forums.

In our informational forum you will find a lot of different articles on keeping kidneys healthy.

Jean

Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA

Time Zone is Eastern Time Zone: S.E. Michigan

"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)


10 Days until:  Graduate
 
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-SHAWN-
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5/9/12 12:32 A

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Oh I see... So you know all the no-no's, like aluminum free everything even your deodorant, keeping your protein intake low...yada yada yada...right?



LIFE-FAITH
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5/8/12 11:13 P

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I have not had a transplant - I am 3rd stage kidney failure - I have Chronic Kidney Disease. I have been maintaining my stage 3 for almost 4 years now.


Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA

Time Zone is Eastern Time Zone: S.E. Michigan

"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)


10 Days until:  Graduate
 
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-SHAWN-
-SHAWN-'s Photo Posts: 25,246
5/8/12 8:54 P

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I do know what an ultrasound is...lol
The downside is they want it done at a facility far away, so travel is involved and my brain injured grandson doesn't travel well.
His labs are excellent...

No biggie I'll write the doctor a letter.



-SHAWN-
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5/8/12 8:50 P

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CLAIRE_LEFT_SP
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5/8/12 5:42 P

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An ultrasound is not as potentially damaging as other tests might be since they're only using sound waves - not drugs, so I don't see a downside to having one done. After that long and in such a young person, I can see them wanting to get a full workup before he gets through puberty. Hormones have an impact on kidneys - so maybe they want a before picture in case symptoms start appearing?

Did they do blood tests and find that his kidney function is deteriorating? That would definitely be a reason to have the test.

Claire
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Those who think they have no time for a healthy lifestyle will sooner or later will have to find time for illness.


LIFE-FAITH
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5/7/12 10:29 A

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Yes I have had an ultrasound - a few in fact

Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA

Time Zone is Eastern Time Zone: S.E. Michigan

"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)


10 Days until:  Graduate
 
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-SHAWN-
-SHAWN-'s Photo Posts: 25,246
5/6/12 8:59 P

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LIFE-FAITH
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5/6/12 5:22 P

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Hi Shawn,
You will need to clarify that with your doc. Because he was so young when he got the transplant, they may want to keep an eye on it as he grows.

Some kidney diseases require more testing with ultrasound then others.

Welcome to the team!
Please let us know if you need support, encouragement or help.
Jean

Dad: BIBLE: Basic Instructions Before Leaving Earth

Leader:Loving Our Kidneys
Kidney Failure is the 8th leading cause of death in USA

Time Zone is Eastern Time Zone: S.E. Michigan

"Seventy years are given to us! Some may even reach eighty.
But even the best of these years are filled with pain and trouble;soon they disappear, and we are gone."(Psalms 90:10)


10 Days until:  Graduate
 
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-SHAWN-
-SHAWN-'s Photo Posts: 25,246
5/6/12 2:33 P

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My grandson will be 13 in September, his kidney transplant was at a year old.
Labs are excellent, no problems...

Why then does a doc want an ultrasound of the kidney?

How will that benefit my grandson?

I don't care about docs curiosity, is it standard procedure when all is better then ever?



 
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