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10/8/12 11:10 A

Caroline, I was mistaken about the anemia getting worse. It was actually my BP meds causing the problem. My BP was dropping way to low causing me to be very weak. My meds were lowered and I feel great now. I will be seeing my Neph in December for a follow up visit..

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9/13/12 12:21 A

I am still holding at stage 3. I hope every one is hanging in there and doing good. Dont forget to check your Blood Pressure, and drink your water, but remember dont go over your limit of fluids every day.

C

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9/5/12 3:57 P

for you Claire. I hope it continues for you.

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9/5/12 2:55 P

I got my blood test results, finally, and I'm still in stage 3. Each time I get my blood tested, my eGfr moves from the low 40's to the high 50's. All good numbers, but not stable.

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8/21/12 11:38 P

Janny, have you found out any thing yet from your Neph. if you can take any thing for the anemia.
the more we protect our selves from the high blood pressure the better are kidneys are.
Wishing you the best.

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8/7/12 11:40 A

Thank you for the recommendations. I will definitely talk to my nephrologist about it on my next visit. My GP told me that iron isn't my problem. It is the kidney disease causing the anemia, but I have found that he isn't well informed about CKD. He took me off of Losartan saying it was damaging to my kidneys and when I started seeing a nephrologist he put me back on Losartan because it is protective of the kidneys. I check with my nephrologist about everything now. The GP's mean well, but they just don't know enough and they can actually do harm.

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8/6/12 11:04 P

My Nephrologist did put me on Iron and i take B12. I do as pure as i can on these. Here is what i started taking.

Ultimate Iron--Multiple forms of iron and maximum absorption --Its a Enzymatic Thearpy, and womens health. 2 soft gels a day is what i take it has a small amount of B12 in it and also Folic acid. Folic acid is one we need as women and a lot of us dont have enough of it. Its good to take Folic Acid when you take B12.
Methyl B-12 5000 mcg. --by Jarrow, it is a lozenge you dissolve in the mouth or you can chew it. It is cherry flavored.
I ordere these from Amazon, no tax or shipping charge. And they are less expensive then other sights. You can compare prices with Swanson's but Amazon is usually less expensive. check this out if you are not taking any thing it might help you, check with your Dr. first though.
Caroline

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8/6/12 10:50 P

I have trouble with the anemia too. I can't plan anything at night because I just get too tired. I often nap mid day and there are days that I just have to give in to it.

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8/6/12 2:49 P

I am trying so hard to improve my GFR. And now to tackle the anemia also. It just makes me so tired. I hate this feeling, when i dont feel up to things, i try to find me a old movir on TV and watch it and just try to relax and flow with the movie. I am a big fan of Betty Davis, the old movies. I hope every one is doing ok.
C

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7/29/12 7:48 P

Oh, Caroline, I hope you're able to improve your number. I know you'll do every thing possible.

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7/29/12 7:07 P

I am still in stage 3----my visit to Neph on the 25th of this month my GFR is down from 52 to43. I will definitely work hard to bring this up.

C

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7/23/12 6:25 P

I hope our new members will post, what stage they are in
Me i am in 3rd stage for 5 years now., im hoping i will stay here.

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6/28/12 7:23 P

I hope every one is doing good, with there meds and diet. I will be going for my blood work the 1st of july and to see Neph on the 10th.
C

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6/19/12 7:27 P

Oh my! Diazide is harmful when you have kidney disease. I can understand why your GFR dropped. Are you seeing a nephrologist? I have found that the general practitioners are sometimes off track when it comes to treating patients with CKD. My GP told me that the Losartan that I was on was harmful to my kidneys and he took me off of it. When I visited a nephrologist he put me right back on the Losartan (ARB) saying that it is protective of the kidneys. The ace inhibitors and the Arbs are protective. When I needed a bit more help with my blood pressure my neph added the Clorothalidone. I asked if it would do more harm to my kidneys and he said that not controlling the BP would do far more harm then taking the chlorothalidone. It has worked out beautifully. My blood pressure is well controlled and my GFR has been stable for over a year.

I wish you well with the diet. I hope you will be able to meet with a nephrologist concerning the medications and also with a renal dietition to clarify what you can eat.

Edited by: JANNYGIRL3 at: 6/19/2012 (19:28)

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6/19/12 6:01 P

I was also on a diaxide, and am now on the cholo... one.

It was changed from a different one three months ago at
my request because of water retention, however, he failed to
mention at that time to expect a 35 point drop in my GFR.

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6/16/12 9:00 P

Claire is right, a Renal Dietitian is the only person who can help you as to what you need to eat. The answer lies in your blood work, and they go from there. Each CKD patient is different and has different needs as to the food they eat.
Please check this out. What they told you does not sound right for CKD. The diet for CKD takes preference over SP diet.
Take care and the best to you. CKD is a serious disease and what you eat is so important as to how your Kidneys work.
C

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6/15/12 12:12 P

You mentioned that you are now on a diuretic. That caught my attention because I was also placed on a diuretic a year ago and my nephrologist said that I can increase the amount of potassium in my diet. I am on 12.5MG of Chorothalidone in addition to 100MG of Losartan daily for HBP. The Chlorthalidone can deplete the potassium. In the past I have taken Hydrochlorothyazide for HBP for many years and it lowered my potassium so much that I was hospitalized and infused with potassium in spite of being on a high potassium diet and a potassium supplement. As a result I was placed on a potasssium sparing diuretic.

When I was diagnosed with kidney disease I could no longer take the potassium sparing diuretic because it is harmful to the kidneys. The Clorothalidone is a safer alternative for me. My potassium is monitored closely to make sure that I am getting the right amount of potassium so that I do not drop to low again or go to high and of course my phosphorus is also checked. I enjoy a five fruit smoothie that includes a banana and sometimes an orange every day. I also enjoy a baked potato a few times a week and beans occaisionally and have tomato on my salads. I have peanut butter on toast or a few almonds now and then. These were all things that I could not have prior to being placed on the diuretic and I am loving every minute of it. :) I thought I would mention this since you are also taking a diuretic and perhaps you will be able to enjoy more potassium too.

I agree with Azclaire that it is important for you to meet with a renal dietition to discuss what is right for you. That is the best advice that anyone could give you.

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6/15/12 2:40 A

Now that you have kidney disease, any recommendations from SparkPeople or any other source of generalized weight loss advice is moot. Standard weight loss plans don't pay any attention to potassium and/or phosphorus levels, whereas most kidney patients need to monitor them closely. For example, kidney patients are usually counseled to not eat potatoes unless they've been soaked for hours before cooking. Beans and other dried foods (nuts, fruit) are very high in potassium and my dietitian wants me to completely stay away from them. Others are allowed small portions. Tomatoes are usually limited, too.

If you are seeing a renal dietician, then that is the advice you should follow. If you aren't, ask your doc for a referral to one because they can create a diet specifically for you based on your blood tests, size, age, etc. In the meantime aakp.org has a lot of renal diet nutritional guidelines.

I've never heard anyone advise doubling the carb numbers. I would think that if food companies were knowingly lying on their labels someone would be in deep trouble.

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6/14/12 9:21 P

He didn't give me a number for the protein.
The book says under 21 for very low protein, and that 40
was what we all need. SparkPeople wants 60-65 for 1200-1300 calories.
It's all very confusing to me LOL

He said no white bread, pasta, potatoes, corn.
He also said to figure twice the amount of carbs as what they "quote" ie
if they quote 15g carbs for 1/2 c of potatoes, figure it is 30g etc. ?????

(I had a baked potato and chili from wendy's for lunch and spiked past 220,
so he was telling me I couldn't eat that any more LOL)

I know if I am counting carbs, that I do best with 30-40 g carbs per meal,
which is way under the 60g the dieticians say I can have. (SP says I can
have 150-163 g of carbs per day)

No mention of veggies and fruits besides the high carb ones.

Edited by: NWME4EVRMARYANN at: 6/14/2012 (21:32)

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6/14/12 4:11 P

Is he just talking about grain-based carbs and you can still eat all the fruits/veggies you want? I'm curious, too, on how much protein he wants you to eat.

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6/13/12 4:49 P

I am back in Stage 2

He put me on a diuretic for swelling and he thinks
that is what caused the drop from 95 to 70 in three months.

I am not a happy camper

Not sure what I need to do, he doesn't want me to eat less
protein, but less carbs, so it's back to the drawing board.

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6/3/12 5:15 P

I understand what you mean by accute Kidney failure, i wasnt thinking of this at the time. Yes i know people who have gone into hospital and this happens and then they will find the cause and treat this and kidneys can be ok, but they do have to keep a check on there kidneys. But at the same time some people come out with Kidney disease.. thanks again.
C

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5/25/12 1:01 A

Thanks for the info, i will read it.
C

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5/22/12 9:47 A

Here is some info about Acute kidney failure:

Acute Kidney Failure—When Kidneys Suddenly Stop Working

Patients are sometimes confused about the difference between acute kidney failure and chronic kidney failure. Chronic kidney failure is a condition where the kidneys’ ability to filter waste from the bloodstream becomes worse over time, generally a period of years.

Acute kidney failure is the sudden loss of this important ability. Although the condition can be life threatening, it can also be reversible. Patients whose kidneys have suffered from a direct injury or an obstruction are at risk. According to American Family Physician, 5 percent of hospitalized patients develop this condition.
www.davita.com/kidney-disease/overview/sym
ptoms-and-diagnosis/acute-kidney-failu
re---when-kidneys-suddenly-stop-workin
g/e/4719

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5/22/12 12:51 A

Kidney failure does not go away to my knowledge, it can be slowed down with diet and exercise. I will have to look this up to be sure, i have not heard of any one being cured . I have been in stage 3 for about 5 years now. My GFR started at 52 dropped to 47 and during a stressful time it dropped to 22 , it scared me so bad, i got so strict with my diet and raised it up to 46 and holding. Take care.

C

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5/3/12 9:58 A

According to my nephrologist I am stage 3. I was stage 4 1 1/2 years ago. My nephrologist believes that I was in acute kidney failure due to powerful antibiotics that I had to take after being bitten by a deer tick. After recovering from the antibiotic I was back to stage 3. I agree that Chronic kidney disease does not change. We improve our numbers by lessening the workload of our kidneys, but the damage remains. Acute kidney failure may go away on it's own.

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5/3/12 2:14 A

Well i do agree. Once you have kidney disease you have it, Hold on you are doing good. I remember Jen saying that about her Dr. saying she didnt have CKD. As i said before once you have it you have it and it wont change that fact.
C

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5/3/12 2:08 A

It seems logical to me that I'd be considered stage 2, but when this has come up before, Jean has indicated she thinks differently. That once we are a stage we are always at that stage - the improved eGFR I see right now is just an indicator of how well I'me managing my Stage 3. And, I can see that point of view. If I stop watching my diet and exercise, my numbers would slide right back into the 40's, I would think.

In fact, I remember Jean recently talking about the need to change docs because her doc didn't believe she had CKD because her #s were good. That seems logical on paper, but I think we all agree she and I still have kidney disease. If I got my number above 90, would any of us think I didn't have kidney disease anymore and could go back to my Hostess Cupcakes? I don't think so.

Sooo, I think I believe I'm in stage 3 with stage 2 numbers. No wonder I was completely confused when I first joined this team - you guys kept saying, "There's no one answer... it depends... " until I wanted to rip my monitor off the table! This would be one of those moments!

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5/3/12 1:13 A

Claire, with a GFR of 63 wouldn't you be considered stage 2 now? this would be

C

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3/29/12 9:15 P

Hanging in there with stage 3.

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3/26/12 11:03 A

I decided to start completely over, my old "name" was EmilyD1952.

As I said before:
Hi!

I think I am in stage 1.

My microalbumin/creatine ratio is 30.
However, my estimated GFR is 95.

My test before last was estimated GFR was 64
And m/c ratio was 0.05 (normal being below 0.03)

I guess I am in stage 1, but he didn't really say so.
He did say he wanted me to eat regular portions of
protein, not to increase my carbs as my BS are not
under control either. He changed my diuretic and it
is still not doing a great job, but will give it one more
week before I call him again.

I finally got back to walking today, only 10 min and puffing
the whole time, hands and feet swollen this morning. Will
try for another 10 later if I feel like it.

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3/22/12 8:21 P

Just found out today that I have stage 1 and might need a stent or one of those back things (sorry forgot name of procedure.) I don't do well with stents in fact they are unbearable! So I'm hoping I can talk the doctors out of having one. I don't know which is worse the thing in your side the tube to your kidney or a stent for pain???

I have hydreneuphrosis and they want to do this to keep my kidney from getting worse. Tomorrow go in for Kidney ultrasound.

Lisa

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3/18/12 1:31 A

So sorry Claire but you can bring it back up, diet, diet.

Hang in there Jannny you can do it too.

Edited by: CBEVNOW at: 3/18/2012 (01:32)

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3/17/12 10:31 P

Just got my new results yesterday.

Stage 3, eGFR 49 (down from 59)

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3/17/12 7:59 P

I am still stage 3, GFR 34.

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3/17/12 1:04 P

Hay every one be sure and keep us posted on what stage you are in we have new members.

I am still in stage 3 at 46 GFR for about 4 and half years---for me.

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3/7/12 2:31 A

If you went from a 64 to a 95 GFR that is wonderful. good for you. Do you have a Nephrologist? If you do always get copys of your blood work, so you can check them out at home. Usually when you are Debetic, they will tell you to follow the Kidney Diet as to what your needs are. Eack CKD patient has different needs as to there protein. pot, phosphorous, sodium, calcium etc. A must is a Renal Dietition. Most dr. even your Nephrologist will say you wont need one until 4th stage(dialysis) wrong, insist in a nice way to see a Renal Dietion, Diet is a preventative way to help slow down CKD. Wishing you the best.

C

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3/6/12 11:37 P

Hi!

I think I am in stage 1 or 2.

My microalbumin/creatine ratio is 30.
However, my estimated GFR is 95.

My test before last was estimated GFR was 64
And m/c ratio was 0.05 (normal being below 0.03)

Will clarify with doc on Tuesday.
For sure, I know I am kidney disease challenged.

Edited by: EMILYD1952 at: 3/6/2012 (23:43)

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2/28/12 1:18 P

Still in Stage 3 -

GFR is 62.9 (stage 2 reading)

BUN 16 (normal stage 1 reading)

Creatinine (normal stage 1 reading)

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2/27/12 4:06 P

I am still in 3rd stage,
C

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2/9/12 8:20 P

Thanks all!!!!

It appears with the stress of relocation uncontrolled BP I am at stage 3

I am going to make better food choices. And get my BP down down right now it is 168/63 with one med. I have a Dr's appt next week so I hope things will get better.

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2/8/12 4:54 P

Keep up the great work!

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2/8/12 4:10 P

Janet, that's wonderful news. So glad you're getting good care.

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2/8/12 12:43 A

Janet, that is such good news, moving to stage 2. I am glad you are where you can get good care. Some of our members are not so fortunate to get good care.
I my self am on 3 blood pressure meds.
A lot of it is what you eat, dont you think. Keep it up. Good and hard workon your part.
Caroline

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1/20/12 12:57 P

I have moved to stage 2 gfr 73

this is a eye opener. I will take better care and get my HB down it takes 5 meds and I am out to lunch when I have to take all that medciation however maybe I can keep my kidneys longer.

I am in Mass the care is more accessible here so I will get the care I need.


Janet

Edited by: SETAGOAL1 at: 1/23/2012 (21:42)

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1/20/12 11:37 A

I am stage 3, gfr 34.

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1/11/12 10:29 P

You both are so right and when you are in stage 1-2-3 if you dont do something about it as we have done, we could be waiting on a transplant at the moment. Most Dr. wont tell us that this disease Can be helped and not progress fast with the help of diet and exercise.
You know they say the best way to find a good Dr. is to call a Nurse, and ask one of them.
Caroline

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1/11/12 12:56 P

I know what you mean, Jean. Some of these primary care doctors seem to shrug off ckd esp. if it's Stage 3 or lower. BTW, I'm still in Stage 3, thank God.

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1/11/12 9:36 A

I am suppose to see my nephrologist in Feb. My primary doc will not give me a referral - so I have to change drs again or persuade him somehow to believe that I have ckd. He does not believe me due to my test results. ugh! I need to start to deal with this TODAY. I wanted to get through the holidays and then deal - well I guess that day is today!

Thank you Caroline for pushing me to face this issue. Jean

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1/11/12 2:07 A

The last time I saw my doc I was doing well enough that I didn't need to see her again for 6 months. I'm due to see her again in Feb. I'll have an update then.

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1/10/12 11:31 P

Come on every one give us a up date or date as to where you are. This is a new year , some of us dont know where you are and some cant rememberLOL.
As per my last message i am still in 3rd stage and holding, i go see Neph. on Jan.24--12

Give us a up date please.

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1/2/12 7:36 P

I am still at 3rd. stage and holding. go see Neph. Jan 24, 12.

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12/7/11 11:44 P

Thankfully I am not on this scale yet. I am dealing with Poly-Cystic-Kidney. Otherwise my #s are "normal" right now...

Just know I gotta be careful or I will have issues with my kidney soon.

aria

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9/17/11 6:26 P

Hi I had acute kidney failure which is different from chronic at my worse I had a gfr of 30 but it is now in the normal range and I am classed as though I have no kidney problems as my condition was acute an allergic rection to voltaren a NSAIDs while suggesting from swine flu
March 14 gfr 55 ( swine flu and voltaren) reduced weekly 37 36 32 30 stayed at 30 until was on put steroids and it has climbed was 64 2 mths ago but has improved further and the only reason nephrologists are seeing me is because I'm on steroids they prescribed they've told me I have normal function and unless I take NSAIDs again I will remain healthy
As my condition was acute normal function feb to gfr 55 in march to gfr 30 I felt the affects badly and it stopped me in my tracks constant nausea unable to read constant headache need to use loo all time Insomnia muscle aches and pains anemia low potassium leaking protein all hit at once where in chronic it's a slow progression mine was like when a stomach bug hits it was sudden but has been cured too as it was an allergic reaction aclife threatening one too I know but
I don't need my gfr it's normal now !!:-) I can feel my kidneys are better I don't feel the burning in them I had before I don't feel cold around them now it's an amazing feeling to feel so Alive after feeling so slow and sluggish and in pain and nausea and forgetful and swollen
Xx

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9/17/11 5:33 P

Bounceback, glad to have you with us. do you know your GFR that will help a lot. As Jen says Vitamin D is a problem with most CKD people. Are you on extra Vit D.?
I was recently put on 5000iu a day of Vitamin D3. What stage are you? Please keep us informed and we will do the best we can for you.

Caroline

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9/17/11 4:31 P

Low Vit D is very common in those of us with kidney disease - as our kidneys do not function properly to keep the proper amount of D in our bodies. I am glad to see that you have checked in with us. I hope that your kidney function continues to improve.
jean

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9/16/11 11:51 P

I have
just been told my kidneys have normal function low end but normal not quite sure gfr but I have stopped seeing nephrologists fortnightly to every 6 weeks all the only problems I have now are low vit d and high cholesterol. And ensuring I never take any NSAIDs or aspirin ever or It will kill me
On 3mg steroids now in 3 weeks will be off completely

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9/16/11 11:14 A

That is such wonderful news! Keep on keeping on!

I am very thankful that you joined our team! God is so very good!

Jean

Edited by: SPARK-JEAN at: 9/16/2011 (11:15)

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9/16/11 9:10 A

Such wonderful news, Charmin! Since today is Friday, lets go out and buy some Mogen David...we can celebrate with that!! LOL :)

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9/16/11 8:40 A

Bravo, CHARMIN944!

Posts: 2,395
9/15/11 11:31 P

Your hard work is paying off! It's very motivating to see others success, so you've made my day, too.

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Posts: 3,216
9/15/11 8:23 P

, Caroline. I am very excited.

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9/15/11 7:06 P

Oh Charmin that is soooooo wonderful. I am so happy for you. It makes you feel better doesn't it. It can happen i know mine dropped one time to 26 and i brought it up to 42. So keep doing what ever you are doing.
caroline

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Posts: 3,216
9/15/11 5:46 P

My GFR has gone up to 39 from 27. God is so good! And I echo my teammates when I say how blessed I am that I stumbled upon this team!

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Posts: 6,192
9/15/11 3:06 A

I am still in stage 3 and holding on for as long as i can. Diet is so important in CKD, so try to follow as much as you can on your diet. I know we all drift and eat to much of some thing but if we do, get right back on the good wagon.
I know, because the other day i made navy beans, with onions, carrot's, spinach, and they were so good. I made corn bread, my son loves it, so i had a small piece, and the soup beans, had to take a pill for my Phosphorus after i ate though. So i know we all do this, we are only human.
Caroline

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Posts: 2,072
8/26/11 5:32 P

Claire,

Just heard that I am in stage 3 kidney disease. Didn't know that!

I will check out the link you shared..thanks! :)

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Posts: 2,395
8/26/11 5:25 P

It is important to know what stage you're in because it changes how you treat your disease. There is a blood test eGFR (globulin filtration rate) that measures what stage you are on. Attaches is a link to the description of each stage and the related eGFR results


http://www.kidney.org/professionals/kdoqi/guidelines_ckd/p4_class_g1.htm

Happy reading!

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Posts: 2,072
8/26/11 4:21 P

I believe I am in stage 1...have no real ideas of such stages. Any idea of what they mean? :)

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8/10/11 5:52 P

Fabulous that you're able to wean yourself off the steroids! I'm sure that's going to help your health.

Good luck with the blood pressure. If you can afford massages, they really help!

current weight: 156.5

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SparkPoints: (39,262)
Fitness Minutes: (41,137)
Posts: 1,946
8/9/11 8:25 A

Hi! I just saw my nephro 10 days ago. I have lupus glomerulonephritis. Kidneys still leaking protein but my team thinks it's because I have damaged kidneys and not because my disease is active, because all my other results are pretty good, except my blood pressure. I've been taking prednisone since 1998 and other meds, but the prednisone is getting me down and I'm weaning off it. I'm down to 5mg from 80mg a few years ago!

Posts: 6,192
8/9/11 4:18 A

Do you see a Nephrologist? do you know your GFR at the moment? When were you last checked for this? i want you to be healthy. I have not hear of remission in CKD but nothing is imposable in life. wishing the best for you. I will check on the HBP for you.

Caroline

current weight: 20.0  over

25 12.5 0 -12.5

-25

SparkPoints: (39,262)
Fitness Minutes: (41,137)
Posts: 1,946
8/8/11 10:16 P

I've been to level 4 at my worst but I think I'm in remission now. HBP is my worst symptom at the moment.

Posts: 6,192
7/25/11 10:39 P

Still in stage 3
Caroline

current weight: 20.0  over

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Posts: 2,395
7/25/11 3:46 A

Stage 3,GFR 48

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Posts: 14,163
7/15/11 10:23 P

stage 5

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Posts: 3,216
7/12/11 6:23 P

Stage 4 right now.

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SparkPoints: (26,961)
Fitness Minutes: (13,294)
Posts: 1,816
7/8/11 10:39 A

My Dad is in stage 5. He is on dialysis. We siblings have an appointment with his Team in a couple of weeks to discuss the possibility of one of us donating a kidney to him.
As for me, I have Lupus and have had kidney issues related.
FAith

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7/7/11 8:39 P

I'm in stage 3.

My husband was just diagnosed Stage 3 as well - he has hypertension that is often out of control, so that's probably what's damaged his kidneys.

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Posts: 673
7/7/11 10:34 A

I am in stage 1 but have a whole bunch of other serious health problems too and only 46. Time to take my walking more serious than ever!

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7/5/11 4:32 P

Team I have decided to permanently put this in the intro forum - it keeps getting moved around due to the NEW info shared monthly.

Feel free to re-post here if you want new members to know which stage you are in.

I am in stage 3.

jean

Edited by: SPARK-JEAN at: 7/26/2011 (09:20)

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