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DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/29/12 1:32 A

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C I just put it in the search bar and it came up, don't know what I was doing wrong but it came up in the search bar, so in order to find out if you have this you have to have certain test done right? I've had edema in my feet and ankles since I as 46 and I'm now 61 no one could tell me why and my dad had edema and he had a bad heart, but they ruled that out in me, my heart is fine, but no one did any tests or anything in the small town I lived in, they just let it go, but you know they told Sam this one guy that his kidneys were fine, and then he came down with a friend to Sioux Falls about 2 years ago and they had to put him on diayslsis right away and he was told for years nothing was wrong and so was I!

So little town docs are only gp's and don't know much and how I went from having nothing to stage 3 or whatever, and no one ever told me about what the edema was caused by and I was thin back then so it wasn't due to weight, but no one ever pursued the problem they just ignored it like they did Sam, and now he's waiting for a transplant but he's an older man so I don't know if he ever gets one.

I do have puffiness under my eyes and in my hands, but they never tell me its edema but it never goes away even when I sleep.

Ellen
DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/29/12 1:18 A

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C I typed those two addresses in and got page not found on both of them, I typed it in twice and got the same thing, so I can't get to the right page as it said page not found, its www.utmedicalcenter.org/disease00496 right and the other one was www.unckidneycenter.org/minimatchange.html right? I get on both of them page not found?

Ellen
CBEVNOW's Photo CBEVNOW Posts: 6,285
11/28/12 10:59 P

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Ellen, Go to this site, www.utmedicalcenter.org/disease/00496 i have another site for you, me i could understand this one better, but i did get something out of the other one also.
www.unckidneycenter.org/minimalchange.html
I think if your read this your self it will help you a lot. Then if you want to talk about it, we can discuss it. I hope this helps you some.

C emoticon

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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DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/28/12 7:01 P

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whats minimial change mean?

Ellen
DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/28/12 7:00 P

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ok thanks I will call the doc and get the bloodwork report and see what it was but I think the last one was done by my primary not the kidney doc, the kidney doc did one back on august and I asked his nurse to see a renal dietican and she said she would ask him but I never heard back from her, so I will give her a few days and if I Don't hear from her back will call her back and said look I want to see a renal dietician, I did tell her it was for preventative medicine and she said ok and then that was it, no one called me back today, i was out but I got voice mail.

No I don't normally at ice cream as I'm lactose intolerant unless I take lactaid, as I love it now and then, but I did not know jello and ice cream counted as liquids, this is all new to me ladies, so I just know nothing!

Ellen
CBEVNOW's Photo CBEVNOW Posts: 6,285
11/28/12 5:46 P

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Claire, glad to see you back, missed you. Have you tried sweets like some of the old fashion puddings like the Watergate dessert, you can make it low fat and all that. The orange jello, with the mandarin oranges, and cool whip. I make a peanut butter pie which also can be altered, its made homade pudding, so i use skim milk, etc.
I have a sweet tooth also, i try to limit it to once a day, and usually its a evening snack for me, with a cup of coffee.. Keep us updated.
C

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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CBEVNOW's Photo CBEVNOW Posts: 6,285
11/28/12 5:40 P

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Ellen, usually your Neph. or dietitian will tell you what you should be drinking. I dont know if you know this or not but, foods like soup, ice cream, jello, etc are considered liquids. thats why i recommended the site DaVita they will tell you so much .
When you ask me the question, did you mean,---- Minimal Change Disease? I have not looked this up for i wanted to know if this is what you meant. Let us know.

C

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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CLAIRE_LEFT_SP's Photo CLAIRE_LEFT_SP Posts: 2,802
11/28/12 4:28 P

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Hi! sorry I've been quiet for awhile. Just so much going on - but mostly, I'm not doing any of the right things. I have been struggling with my sugar addiction for over a year and now it's escalated to bingeing and hiding the treats, which I have never ever done before.

Ellen, water intake changes based on what size you are, how much you exercise, etc. The 64 oz is a commonly stated average target. Honestly, the BEST way to decide is the color and smell of your urine! If you can smell it or if it the color of tea, you are not drinking enough. There shouldn't be any smell and the color should be 1/4 to 1/2 the tea color. If there is no color, you are drinking too much.

Flooding your kidneys is as dangerous as starving them, so it IS important to find the right amount for you. I drink about 10 cups (80 oz) a day even though I'm not exercising right now. My body seems to use up more water than the average person.

It doesn't matter what form the water is in: count water, tea, coffee, juices, sodas.

You are running into the problem most of us have encountered - the majority of the medical community still treats chronic kidney disease too lightly. Stage 1 is excellent - as we age, even non-kidney disease patients lose kidney function, so most people end up in Stage 2 by the time they kick the bucket. Stage 2 and 3 would be considered moderate to me. We are in serious trouble if we move to Stage 4 and on dialysis or transplanted in Stage 5.

So, when any doc says, "No problem" They. Are. Wrong. Period. So, we HAVE to more closely control this condition than we might others. As others have urged, insist on a referral to a renal dietician. Call the doc back and ask them to mail you a copy of your lab results. Figure out which results are too high or too low (the sheet will tell you that) and talk to us about them - get our opinion on what you should do about them, then ask your doc next month specifically about those elements and what s/he wants you to do about them.

If our answers match up YAY! If they don't, you'd have an opportunity to ask why our suggestions are or are not good for you. Ultimately, you and your medical team are responsible for making your health care decisions based on your individual circumstances, so you'd just be getting our opinion to take with you.

It'll take time to learn all this stuff, but hang in there!

Claire
********
Those who think they have no time for a healthy lifestyle will sooner or later will have to find time for illness.
DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/27/12 9:29 P

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I forgot to ask how much water should I be drinking, I use to do weight watchers and they said 64 ozs a day but when I lived in this little town the primary told me 52 ozs a day or so but wonder if I am drinking too much, so do you all know whats safe to drink for water or tea ?

Ellen
DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/27/12 6:00 P

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Hi Everyone! I have the same problem, all my emails are going into spam, so if you figure out a way to get them in my inbox let me know. I have a question, the nurse from the kidney doc called me with my test results, but she did not know what or if this was anything major for me to worry about, so she said ask him next month when I see him, what does it mean if your kidneys are dimished? I did a yahoo search but could not find anything, so if you know would you please tell me? Thanks, hope you all have a good night, it was cold here today but the sun was out later in the day, pretty good for the last of november in South Dakota, we usually have blizzards by now!

Ellen
CBEVNOW's Photo CBEVNOW Posts: 6,285
11/27/12 4:35 P

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I hope every one is doing good today.It is cloudy and cool and dreary here today. I am sooooo lazy today.
I want to say i am not getting my E mails from SP, for some reason they are coming to my Spam , i am going to try to get this right today.
Take care of you and be healthy.

C emoticon to all of you.

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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DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/24/12 7:15 A

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Good Morning everyone! Thank you for understanding, I don't mean to be a wet rag I just don't understand some things and why the docs overlook stuff. And say oh its just mild ckd when the range shows its not. I hope you all have a great day, I am headed for the shower, its early and I like to get in their early as it gets so hot without heat in my apt, take care all!

Ellen
CBEVNOW's Photo CBEVNOW Posts: 6,285
11/24/12 1:38 A

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Roses, glad your dinner was a good one. You must be full of energy, with already decorated for Christmas. emoticon Take care of your self and dont over do things.

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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CBEVNOW's Photo CBEVNOW Posts: 6,285
11/24/12 1:36 A

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Ellen i think most of us have some one in the family who has CKD, my Dad had it. And as far as venting , go ahead and vent every one on this team does it and its good for the soul and body.
If you are walking start slow and just go at your own pace, you will get stronger. And post your feelings on here it will help you. And ask questions, we will try and help you. We are all in the same boat so to speak.
C

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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ROSES17's Photo ROSES17 Posts: 10,218
11/23/12 5:51 P

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Had a wonderful dinner party last night for Thanksgiving. I think everyone enjoyed themselves. Now everyone is asking if I am going to do one for Christmas also. I don't think so even though my house is decorated to the hilt. Took my Thanksgiving things down this morning and decorated for Christmas. Everything looks so pretty.

Lottie
Eastern North Carolina


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DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/23/12 8:15 A

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Thank you I will do that, so if stage 4 is dialysis then stage 5 is it? Thats not very comforting, I know an older man who got an older kidey in his 60's and it lasted for 15 years and now he's back on diaylsis, and I know that people like me would never get a trasnplant as I have too many health conditions and also his wife Darlene had a double kidney transplant all at once, but she did not do so good and died. She was in her late 60's and it was really hard on him, but I talked to my cousin last night she's in stage 3 PKD and she told me docs don't really take notice till its too late.

PKD runs in her side of the family, its not skipped over to my dads side, but her dad had it and my real grandfather had it, he died from a blood clot back in the 30's when they did not know what to do about blood clots. But because of my ongoing high bp and my diabetes is good, but I've had burning foot pain almost two months and the docs don't seem to be worried, but I see the neuro monday, see what he thinks it is, my cousin told me that of course none of us drink but she said you can't have chocolate and thats going to be hard I love it.
Her husband is on diaylsis too, he had a stroke about 3 years ago and then got kidney disease, I don't know how the two are related but he does it at home. His Gfr was 15 and before my uncle went on diaylsis he fought going on it as he was a working farmer and would not accept it, his got so low its a wonder he still was alive.

I hate to cook, I usually eat one meal a day here a the reitrement apts and then have a light breakfast of yogurt and fruit and make a small meal for supper, I hate to be in the kitchen, but I can learn.

Thanks for your help I really appreciate it, I did go to Davita and reigstered thought I can use all the help an resources available to me, it can be a scarey future to go it alone, so I need everyones help , right now its like why didn't the docs tell me I had stage 1 or 2, why don't they tell people?

Ellen
CBEVNOW's Photo CBEVNOW Posts: 6,285
11/23/12 8:05 A

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Ellen, i hate to say this but your Endo was wrong, stage 5 is the last stage which is Transplant. When you ask for dietitian be sure and ask for Renal Dietitian. They know about Kidneys.
Also always ask for a copy of your blood work. That way you can look and study it when you get home I keep files and write notes on mine.
Take your BP every day and keep a record of it and take it with you to Neph. We are here for you, support is very important to CKD patients. emoticon
C

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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DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/22/12 7:17 P

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Thank you much making notes here, so I can add it to my notes when I see kidney doc next month, I have a heel spur now and I've had them in the past, and had gout too, thus the high uric acid that no one did anything about till this year when I moved to Sioux Falls and they listened to me for a change.

I was put on prednisone too and I gained weight too, you can't help but, it makes you so hungry, I hope you are doing better all the way around, thanks for the info, the Endo told me that stage 5 is diaylsis not 4, boy these docs dont' know much do they? I am waiting for the results of the tests and am scared out of this world, but I'm going to ask him about the dietician and go from there, these docs seem not to care anymore, its not their body, what happend to house calls and good docs that came day or night? My mom was a nurse and everyone loved her, including me, she was the best shot giver and she cared, she would go by and check on people, so I miss that in more ways than one and I miss her and dad too, thanks for the help will check things out, I appreciate it very much!

Ellen
CBEVNOW's Photo CBEVNOW Posts: 6,285
11/22/12 4:31 P

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Ellen, i am glad you are getting some answers. and i can bet you your Nephrologist will still tell you 3rd stage is not serious.. I was in 3rd stage also when they told me i had CKD. One of the reasons Of not knowing you have stage1 or 2 is because PC. Drs. are not trained to tell you this and most of them dont take it serious. Insist to him you want to see a Renal Dietition, he will probley say you dont need to see one until 4 th stage. Tell him you are all about preventive medicine and you want to learn how to eat so you wont get to 4th stage which is dialysis.
As far as exercise, you are doing some exercise, i my self am a walker, started slow and was doing very well and than i got the Plantar Fasciitis in my heel and i was on Predisone for about 3 months, i am just now being able to walk some distance. I also do curves. But i love to walk. Ask your DR. about what he thinks you should be doing. And also go at your own speed, dont worry about what other people say or think.
Now i have to lose about 30-35 pounds i have gained from the Predisone.
sounds like you are getting it right. Check our DaVita.com site it is a execellent site and also aakp-American association of kidney patients.. this site has a small booklet called AAKP Nutrition Counter, whic tells you the sodium, phosphorus, potassium, Protein, Calories, in foods. It was free when i got mine several years ago, im sure it still is. I ask for 2 one i keep in my purse and the other in the kitchen.
Best to you, C

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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DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/22/12 8:46 A

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I wanted to ask everyone, is walking enough for me to do over a long range or should I be doing more? I do those chair exercises on here and chair exercises her at the retirement center, but do I need to do more to keep active, the inside of this place is huge, it consists of assisted living in the newer section and its very long and then there is our older apts and you put them all togther its quite a long walk, I don't have a pedometer but am going to get one, so should I be doing more or do you think this is ok? I read the article on working out makes you live longer in some ckd patients, so I want to do all I can, so do I need more vigorous exercises or am I doing ok? Is walking ok?

Ellen
DAKOTA4411's Photo DAKOTA4411 Posts: 1,009
11/21/12 9:24 P

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Wow everyone is so busy! The kids my son and his wife dont' drive home for turkey day they try to come at xmas, so turkey day is just another day for me. I had my kidney tests done today at hospital, I don't know the results yet but my ENDO called as I saw her yesterday and she was going to put me on Metformin not because my sugars are bad, they were 5.9 but because I am obese, but I told her I had kidney tests done at the hospital so she looked up my range and said I was in stage 3, now why did my kidney doc not tell me that, he said it was mild and what happend to stage 1 and 2? Not too happy about that, but I kind of wondered after I read things on line.

My back hurts as I laid on this table or bed or whatever they call it and my back hurts, he pressed a little hard on the stomach and kidneys so I hurt tonight, so going to bed soon, I think the problem was when I lived in the little town I use to and the primary did nothing about the high uric acid and it made things worse.

I will probalby get the report from the kidney doc next week since tomorrow is a holiday, Im' going to ask him why he considered stage 3 mild and why he was not honest with me, I'm not one to sit still and be nicey, I want answers.

Hope everyone has a good turkey day and can enjoy friends and family!

Ellen
ROSES17's Photo ROSES17 Posts: 10,218
11/21/12 9:37 A

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I am also a crazy busy lady. Am having 8 people Thanksgiving night for supper and am really looking forward to it. Am going to cook this afternoon and my niece wants me to go to here house at 4:00 for a blind taste test for her science project. It is a real zoo around here today. Am really enoying myself with all of the preparation.

Lottie
Eastern North Carolina


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LIFE-FAITH's Photo LIFE-FAITH Posts: 7,597
11/20/12 10:02 P

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I am a crazy busy lady myself... not enough time to take a breather. I feel so emotionally and physically exhausted! Running mom and dad, taking care of everything for them - house, medical, physical.. I am drained! I am off this week from school, but again every day is something - when I return on Monday - I have 3 weeks left of school for Christmas break - I may just BREAK before then! NOT ONE of my siblings can help - they have holiday plans that do NOT include our parents.. how sad is that? I am taking them with me on Thanksgiving day - I am sure I will be there everyday until Monday when I go to school. OH and mom still has celulitis and the dr may be putting her back in the hospital tomorrow for a day or two.. thank you Jesus! I need a break... doc is about 60 miles round trip... ugh!

I am so very thankful that I am able to take care of mom and dad with all of my health issues and I am so thankful they are still here - so in lieu of that...

HAPPY THANKSGIVING TEAM!
Take care and be blessed!
Count your blessings!
Love your kidneys!
Jean

Dad: BIBLE: Basic Instructions Before Leaving Earth

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


"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)

You cannot change your life until you change something
that you do every day.
~John C. Maxwell~


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CBEVNOW's Photo CBEVNOW Posts: 6,285
11/20/12 4:20 P

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I am finally able to walk some, Oh Glory, how good it feels to walk. My sweet Lexy(dog) was lost so the girls next door have been walking her.
I had some very stressful days the last 2 weeks, and my BP went out of site. Like 201/84 pulse 96--182/90 pulse102, Called my Neph.( i am on 3 BP meds) she had put me on a new one because in her office it was high and i keep a record and give to her each time i go. Any way she caled the drug store and increase my Cardizen from 180mg. to 240 mg. And it is doing the trick, plus i am trying to learn how to better detress.. This was on a Friday the 9th. She called me on Mondaythe 12 to see how i was doing, i would say i have got a great Nephrologist, this is the 3rd one and i know she is the right one. DO NOT BE AFRAID TO CHANGE NEPHROLOGIST IF YOU DONT LIKE YOUR CURRENT ONE, IT IS YOUR LIFE WE ARE TALKING ABOUT. I will see her Dec. 11 and she said do come in, im there i told her
Sorry i havent posted more lately, but between the foot and the BP and my Stress Person its been kinda crazy here..
BP this afternoon was 134/60 so the meds are working.
I hope every one is doing good, dont cook to much. emoticon emoticon emoticon

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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ROSES17's Photo ROSES17 Posts: 10,218
11/2/12 3:52 P

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I also think of the victims of Sandy. Those people need all of the prayers we can give them.

Go to the nepherologist on Monday. Hope everything goes well.

Lottie
Eastern North Carolina


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CBEVNOW's Photo CBEVNOW Posts: 6,285
11/2/12 2:59 A

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Glad your mom is doing good Jen. Tell her best wishes from all of us. And you take care.

I have been dealing with this foot thing and it has been so overwhelming , not being able to walk and than the meds, are making me gain weight, but it sure helps with the pain. It is doing better. I hope this will be my last week on the med. I still wear a brace at night and i believe that helps. Also going to get one for the day to wear it is more flexable, and can wear with a shoe.. Trying to get things caught up a little around here. it is hard when you cant walk. At least i can hobble.
I am so thankful for home and hearth,prayers for all in the way of Sandy, storm. We must be a nation of prayer for these people. My heart goes out to them.
Every one be safe and hugs to all.

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's Photo LIFE-FAITH Posts: 7,597
11/2/12 12:07 A

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Sorry team! A day late!

Can you believe it is November already?

Mom's surgery went well yesterday morning - school is work work work!

Happy Thanksgiving Month for you Americans!
Happy Fall too!

emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

Dad: BIBLE: Basic Instructions Before Leaving Earth

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


"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)

You cannot change your life until you change something
that you do every day.
~John C. Maxwell~


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