kidney disease stage 5

Posted by sally86 @sally86, Jan 23 11:05pm

hello
My Primary care doctor just told me out of the blue that I had stage 5 kidney failure. He said I am so sorry; I want you to go to the ER immediately. He never mentioned my kindness I have been going to Kim for infection with a knee replacement. So I am in shock. I have been reading anything I can find with my family. I finally got a referral to a nephrologist, but it was not until February 28. I'm eating a plant-based diet. Any suggestions? Thank you so much. I have filled out a form online as a new patient as well. Time is significant, I know.

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@sally86, what a shock this must have been for you! Yes, a plant-based diet can be helpful. At one time I was in Stage 4 and on dialysis and went "almost vegan" and was able to stop dialysis and slowly came up to Stage 3.

You don't say how your primary determined your stage of CKD but by all means consult a nephrologist and perhaps 2 nephs-you're entitled to seek a second opinion.

Please let us know what you find out. Meanwhile, I'm sending you positive and healing vibes!

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I did not know dialysis was able to be stopped. Were you doing HD or PD? Currently at stage 5 and hoping to improve lab numbers and get back to stage 4 or better

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I probably shouldn't post this, but I must! Be Careful! A few years back, I was sent to a nephrologist and he diagnosed me with Stage III Kidley Failure and had me coming back to him for 2 years. I always wondered what the "H" he was doing for me because all he did was a UA and a couple of blood tests, with no discussion, but with directions to continue coming back monthly. After the couple of years, I was hospitalized with something else and in giving them my history I told them about the kidney failure. The hospitalist told me, after a couple of days, that there was absolutely nothing wrong with my kidneys, that they were perfectly healthy! I stopped going to the nephrologist and reported him to Medicare for fraudulous treatment, but they could have cared less. Your diagnosis is probably correct, and I am so sorry for that, but just be careful. It never hurts to get a second opinion. My best wishes to you.
P

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So when he told you to go to the ER immediately, did you go? If so, what did they tell you? I was suddenly diagnosed with End stage renal disease and was able to stay stable in that condition for the next 10 years by carefully eating to results of my blood labs. Try to get all of the test results they have and use that to adjust your eating around your lab results. I had high potassium so I tried to cut way back on the foods with high potassium, for example. Ten years in End stage and I never went on dialysis. You can't necessarily control everything, but you definitely can have a measure of control. Keep posting here and let us all know how it's going

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@sally86 This must have been a shock for you, definitely. Do you have access to you bloodwork in the recent past, to see if there was something going on? If this is a sudden onset, I can't help but wonder if there was a bad reaction from medication related to the infection you spoke of?

How are you feeling? If your appointment with a nephrologist isn't until the end of Feb, call their office and explain the situation, ask to be placed on a cancellation list to get in sooner. If you truly do have Stage 5 kidney issues, waiting that long could be a problem. Did you go to the ER and get bloodwork done; did they also say Stage 5? Did anyone talk to you about dialysis?

I am concerned for you and your health, and your kidneys!
Ginger

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@ococean09

I did not know dialysis was able to be stopped. Were you doing HD or PD? Currently at stage 5 and hoping to improve lab numbers and get back to stage 4 or better

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I had HD. I was in Stage 3 until a round of shingles dropped me to low 4. Prior to that my neph had asked me to consider a vegetarian diet but since there wasn't a good renal diet knowledge base in my area I designed my own. That, along with good medical management and less than 6 months on dialysis my docs said gave my only remaining damaged kidney enough time to recover from the "shock" of a bad case of shingles. My kidney began to function better a little at a time until I no longer needed dialysis.

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@m1rmiller

So when he told you to go to the ER immediately, did you go? If so, what did they tell you? I was suddenly diagnosed with End stage renal disease and was able to stay stable in that condition for the next 10 years by carefully eating to results of my blood labs. Try to get all of the test results they have and use that to adjust your eating around your lab results. I had high potassium so I tried to cut way back on the foods with high potassium, for example. Ten years in End stage and I never went on dialysis. You can't necessarily control everything, but you definitely can have a measure of control. Keep posting here and let us all know how it's going

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Hello, I'm near eGFR 20 which would put me in the transplant category. I have not reached it yet. I'm on a 95% vegetarian diet, careful with salt and potassium. My first cousin has also lived with ESRD for over 10 years without dialysis. And a very comfortable life as well. No symptoms to speak of, her blood work, creatinine, keeps her in that stage. She eats very little meat protein and watches her salt and potassium carefully.
May I ask what your numbers are? eGFR, creatinine, proteinuria (?). There are so many factors that play into how serious kidney disease is.
I have nephrogenic diabetes insipidus, which is a rare disease. My urine is always very clear which means my kidneys are not cleaning my blood very well. But I have no noticeable symptoms (now at least).
Kidney disease is mysterious in my opinion. My PCP has a few patients who refused dialysis and are living quite normally in "ESRD." I mean for years! I have an appointment with my nephrologist next week. My PTH is high (315), so I might have to take medicine for that.
My big concern is infection or virus illness. I just finished my shingles vaccine. I'm so careful washing my hands and cleanliness.

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I am so sorry you found out so abruptly. Just remember our kidneys are affected by our other body parts, not drinking enough water, taking medications etc. A serious infection always causes my kidney function to drop significantly. Consider calling the nephrologist office and asking for a expedited appt , explaining what is happening, to see if they can't work you in earlier. Did you go to emergency as suggested? Because sometimes they can call in consults , do tests and a scans etc to see what's happening . Eat well, low sodium, rest, drink fluid, don't take any NSaid type medications such as ibuprofen, and if you start feeling poorly, go to emergency instead of just your primary, where you can get more specific kidney care. I hope you can be seen soon and things progress well. Prayers!

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@mrainne

Hello, I'm near eGFR 20 which would put me in the transplant category. I have not reached it yet. I'm on a 95% vegetarian diet, careful with salt and potassium. My first cousin has also lived with ESRD for over 10 years without dialysis. And a very comfortable life as well. No symptoms to speak of, her blood work, creatinine, keeps her in that stage. She eats very little meat protein and watches her salt and potassium carefully.
May I ask what your numbers are? eGFR, creatinine, proteinuria (?). There are so many factors that play into how serious kidney disease is.
I have nephrogenic diabetes insipidus, which is a rare disease. My urine is always very clear which means my kidneys are not cleaning my blood very well. But I have no noticeable symptoms (now at least).
Kidney disease is mysterious in my opinion. My PCP has a few patients who refused dialysis and are living quite normally in "ESRD." I mean for years! I have an appointment with my nephrologist next week. My PTH is high (315), so I might have to take medicine for that.
My big concern is infection or virus illness. I just finished my shingles vaccine. I'm so careful washing my hands and cleanliness.

Jump to this post

Most recent numbers: eGFR= 79 the first time I've been below 80 since my transplant. Before transplant I was always below 15, usually around 12 or 13 more or less. In the last few months before transplant I went all the way down to 8. That's when I decided to go for transplant. Creatine was all the way up to 6.7 on the day I got transplant. I was generally somewhere between 3.5 and 5.5 for most of the 10 years before my transplant. Since transplant my creatinine has been less than 1 until the most recent bloodwork that showed creatinine at exactly 1. I never had trouble with parathyroid until I got the transplant but it's been ridiculously high since the, but does seem to be slowly coming down. Most recent was 146 parathyroid. My compromised immune system is also a big concern. My WBC got down to 1.6 and I suddenly started testin positive for BK virus after 9 months of new kidney with no BK positives. I too am constantly washing my hands and also mask up whenever I leave the house even to just take out garbage.

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