I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Diet and Recipes => Topic started by: Amanda From OZ on October 04, 2006, 06:04:10 PM
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Hello,
After seeing my doctor this morning i have been put on the most strangest renal diet, which is high in salt, fluids and glucose. (i know this might sound to good to be true.. but its not)
I was told because of my very rare kidney disease (Medullary Cystic Disease) my body gets rid of fluids, salts, and metabolizes sugars very fast, and i need to accommodate to that.
Has anyone else has this same experience??
Toddy is a great day :2thumbsup;
EDITED: Moved to proper section "Dialysis: Diet & Recipes" - Epoman, Owner/Admin
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High in fluids :o meaning you are not on a fluid restriction?
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YEP!!!
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Everything i drink goes straight through!... i was advised to give myself some saline as soon as i get on dialysis, so i wont cramp up. and to let the machine run taking off a very small amount of fluid.
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That sounds very unusual! I thought the main function of dialysis was to remove toxins that our kidneys can not process (mostly by urination). Very interesting stuff, can you tell us more about Medullary Cystic Disease?
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yeah i know.... it sounds strange... both my father and sister had similar situation.... here is some info on Medullary Cystic Disease
Definition:
Medullary cystic disease is a hereditary disorder in which the kidneys gradually lose their ability to function because of cysts in the medulla (center) of each kidney.
Medullary cystic kidney disease (MCKD) is very similar to the childhood disease juvenile nephronopthesis (NPH). Both lead to scarring of the kidney and formation of fluid-filled cavities in the deeper parts of the kidney (medullary cysts).
However, NPH occurs in young children and is usually due to autosomal recessive inheritance. MCKD occurs in older patients and is transmitted in an autosomal dominant pattern.
In these conditions, the kidneys don't concentrate the urine enough, leading to excessive urine production and loss of sodium. Salt supplementation may be required. Additional kidney problems follow. Most MCKD patients reach end-stage kidney disease between the ages of 30 and 50. NPH patients are about 4 years of age when it begins.
Symptoms:
Early in the course of the disease, the symptoms include:
Need to urinate at night (nocturia)
Excessive urination (polyuria)
Weakness
Low blood pressure
Need for excessive salt intake
Late in the disease, the symptoms of kidney failure may develop:
Pale skin
Weakness
Unintentional weight loss
Nausea, vomiting
General ill feeling
Fatigue
Headache
Frequent hiccups
Generalized itching
Easy bruising or bleeding (such as vomiting blood or blood in the stool)
Decreased alertness, drowsiness, lethargy, confusion, delirium, coma
Muscle twitching or muscle cramps
Seizures
Increased skin pigmentation (skin may appear yellow or brown)
Reduced sensation in the hands, feet, or other areas
Signs and tests:
Early in the course, the physician may identify:
The patient is passing large amounts of diluted urine, with salt wasting
The urine specific gravity is low and fixed
Blood pressure may be low and require salt supplements
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Well that DOES make sense (I am wishing I had your type) but what causes the Frequent hiccups?
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Yeah after i read that it made sense to me too :)
I have no idea what causes the frequent hiccups, but it is SO annoying. It always seems to happen at important times, like in the middle of a presentation!! It's annoying!! :-[
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Yeah after i read that it made sense to me too :)
I have no idea what causes the frequent hiccups, but it is SO annoying. It always seems to happen at important times, like in the middle of a presentation!! It's annoying!! :-[
I don't have your condition, but I also get hiccups at inopportune times once in awhile. I work in radio, and I remember the first time I got hiccups while I was on the air. I was in the middle of reading a news story about a traffic fatality when the hiccups came on. That was bad enough, but the strangeness of the situation also gave me the giggles. I obviously didn't want to be giggling through a news story on someone's tragedy, so I rushed through it and went to commercial. Embarassing!!!! :o
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Here's what WebMD said about hiccups:
"Hiccups can be caused by problems with the chemical processes that take place in the body (metabolic problems), such as decreased kidney function or hyperventilation."
Interesting!
I've never heard of symptoms like yours with kidney disease, Amanda. I'm with Angie, I wish I had that type, if I even look at salt I gain five pounds of water.....
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Amanda, if that is contagious, can i pay you to sneeze on me :o ::) HAHAHA, ummm, maybe i need to rephrase that huh? ;D
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ha ha yes nkviking i could imagine how bad that would have been lol
Yeah i do agree with you all, a diet high in salt and fluid is wonderful... I guess any kidney disease is bad but if you could pick one, this one would be it.
So far i haven't met anyone who has medullary Cystic Disease. Do guys know anyone?? would love to know if they have had similar experiences.
The only negative thing which is SO ANNOYING is that everytime i am on dialysis i have to recirculate because i have to go bathroom 1 - 2 times a dialysis. >:(
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ha ha yes nkviking i could imagine how bad that would have been lol
Yeah i do agree with you all, a diet high in salt and fluid is wonderful... I guess any kidney disease is bad but if you could pick one, this one would be it.
So far i haven't met anyone who has medullary Cystic Disease. Do guys know anyone?? would love to know if they have had similar experiences.
The only negative thing which is SO ANNOYING is that everytime i am on dialysis i have to recirculate because i have to go bathroom 1 - 2 times a dialysis. >:(
I feel bad for you though, when your kidneys do fail, its going to be that much harder to give the "good" stuff up...
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what do you mean? my kidneys have failed. i already have no function left. i have been on dialysis for 2 and a half years.
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Oh, OK..I misunderstood, sorry :-[
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haha thats ok your forgiven. ;D
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do you still pee (I know you said you go to the bathroom 2 times during dialysis .. but I wanted to be sure what it was .. uh .. well .. it could be #2 :P)
I still peed for 2 1/2 -3 years after started dialysis. I have always been told that when kidneys go down to 0% function that you do not pee at all anymore because that is one function of the kidneys .. to produce urine.
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yes i meant pee. lol i have to get off dialysis at least 2 times because my bladder is bursting lol
Well i hope thats not the case with me... i love my fluids to much but i don't think thats the case with this disease.
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yes i meant pee. lol i have to get off dialysis at least 2 times because my bladder is bursting lol
Well i hope thats not the case with me... i love my fluids to much but i don't think thats the case with this disease.
I remember one lady who used to be at my unit. She had to pee so bad and once her run was done the nurse didn't want her to go til she did not only sitting BP but standing too so she said, "Bring me the wheelchair! If you don't I will go pee right here!!" lol
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ha ha i have had similar experiences... sometimes i felt the nurses were not very understanding about it either!
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yes i meant pee. lol i have to get off dialysis at least 2 times because my bladder is bursting lol
Well i hope thats not the case with me... i love my fluids to much but i don't think thats the case with this disease.
I still put out some urine, and if I have to go on treatment, they bring me a urinal and pull the curtain around me. I only have to interrupt treatment for a bowel movement. Thankfully, that isn't often. They'd bring me a bed pan if I asked, but it'll be a cold day before I choose a bedpan when there's another option.
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i totally agree.
So far things are a lot better, so hopefully it stays like this.
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ha ha i have had similar experiences... sometimes i felt the nurses were not very understanding about it either!
Ya turns out the dialysis nurse ASSUMED she no longer peed.
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Then the nurse was an idiot!
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I thought there was a thread about hic-coughs and dialysis...I can't seem to find it....do people on dialysis get them more then other people and what do you do about chronic hiccups-my husband has been hic-cupping since noon today(its midnight) they stop for a bit but they keep coming back....any ideas?
http://ihatedialysis.com/forum/index.php?topic=1478.msg18512#msg18512
I found the thread that mentions hiccups as a symptom of kidney failure....
EDITED: Merged Thread hiccoughs to High Salt and Fluid Diet on Dialysis - Sluff Moderator
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I guess I am the only one who is dumb and confused. I don't get it. If your kidneys have failed, and you are on dialysis... and you say you have 0 function left.... how can you be producing urine? Why isn't your body keeping your extra fluids on? Your kidney is what produces urine and if they have 0 function, i dont see how you can be producing urine, let alone drinking all the fluid you want and eating all the salt you want without retaining fluids. I guess i am just dumb, cuz I read what you posted but it makes no sense. I can see you having to pee all the time if your kidneys had function left, but not if there at 0.
Also, if your still peeing sooo much, why are you on dialysis? Is that just to get the toxins out?
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ha ha no your not "dumb" i don't get it either. But with my type of kidney disease (medullary cystic disease) the side effect is increased urine output. It is believed that water goes straight through the kidneys.
My father and sister were in the same situation before there transplant.
Even though i still pass urine, it does not get rid of all the toxins or else i wouldn't need dialysis. I have read that with this disease the kidneys don't concentrate the urine enough, leading to excessive urine production and loss of salt.
My kidney function has been stated by my doctor at being on 0%.
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Ahhh, makes more sense now... I think I get it. lol. Nice diet!! :P