Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

Posted by anet @anet, Oct 21, 2019

My husband who is 75 is in stage 4 kidney disease according to his gfr. His last Gfr was 27. That sounds terrible to me, but his nephrologist says he is stable. He is not diabetic. His creatinine is 3.2, albumin 4.1. Phosphorus, sodium, calcium, potassium are all normal. His blood pressure is controlled by medication. He exercises by walking one and a half miles every day. He has two heart stents and takes cholesterol medicine. He has shortness of breath on occasion, but still does all of his normal activities like light yard work, fishing, dining out, going to church activities. I do think he sits too much, but try not to nag. He is not good about eating healthy, but is getting better. Maybe I am just worrying too much. Would like to hear from others in this stage of kidney disease.

Liked by billagreste

@anet Hi, I am 65 years old and am also stage 4. In the last 4 years my GFR has ranged from a low of 10 to a high of 17. My CKD is the result of a rare reaction to chemo for pancreatic cancer. Because they removed most of my pancreas, I am treated as a Type I diabetic. My greatest side effect is fatigue. I can do a lot of my normal day to day activities, but often need an afternoon nap. I am currently on the kidney transplant list at Mayo. My nephrologist says I am stable also – not on dialysis yet. I hope things go well for you and your husband.

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@marvinjsturing

@anet Hi, I am 65 years old and am also stage 4. In the last 4 years my GFR has ranged from a low of 10 to a high of 17. My CKD is the result of a rare reaction to chemo for pancreatic cancer. Because they removed most of my pancreas, I am treated as a Type I diabetic. My greatest side effect is fatigue. I can do a lot of my normal day to day activities, but often need an afternoon nap. I am currently on the kidney transplant list at Mayo. My nephrologist says I am stable also – not on dialysis yet. I hope things go well for you and your husband.

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Thank you, I hope you continue to be stable and if you need a transplant, younwill get it. Since I wrote the previous post wecwent back to the cardiologist because his heart rate was so low. 43. Took him off one of his BP meds Bystolic because of this. After reading more about Bystolic I found that it can cause kidney failure. We are now looking for a new cardiologist because he told us to let the kidney doctor prescribe a BP medication that would be good for his kidneys. Would really like to go to Mayo Clinic.

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Hi @anet. I hope your husband continues to be doing ok. Coming in a little late on this thread but wanted to tell you I have been Stage 4 for over 24 years. I just turned 60. I am not on dialysis but my function continues to slowly deteriorate. I recently got accepted for the transplant list hoping for a new kidney before I progress to Stage 5. As of now, I'm able to work and pretty much live my life as I please except for all the doctor, transplant center and lab appointments. Fatigue is my enemy so I try not to overdo it. So, of course, you're worried, but keeping a positive attitude, will go a long way for both of you.

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@anet

Thank you, I hope you continue to be stable and if you need a transplant, younwill get it. Since I wrote the previous post wecwent back to the cardiologist because his heart rate was so low. 43. Took him off one of his BP meds Bystolic because of this. After reading more about Bystolic I found that it can cause kidney failure. We are now looking for a new cardiologist because he told us to let the kidney doctor prescribe a BP medication that would be good for his kidneys. Would really like to go to Mayo Clinic.

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Hi, @anet – if you'd like to explore going to Mayo Clinic, you may request an appointment at this link online or via phone http://mayocl.in/1mtmR63

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I am interested in talking with patients in stage 4 kidney disease to learn what treatments they are receiving. My husband is 75. He has high blood pressure which has been under control, but his heart rate was very low. 43. Cardiologist reduced one BP med and heart rate has improved, but diastolic BP is now high. He also sees a nephrologist. His gfr is low 20's. Nephrologist says his labs are stable and acts like he is ok. His diastolic BP has suddenly gone up to 100 at times. I am afraid he is near kidney failure, but nothing is being done. The cardiologist only took him off a medication that was known to lower heart rate and told us to go to the kidney doctor for help with the blood pressure. I think we need new doctors.

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@anet

I am interested in talking with patients in stage 4 kidney disease to learn what treatments they are receiving. My husband is 75. He has high blood pressure which has been under control, but his heart rate was very low. 43. Cardiologist reduced one BP med and heart rate has improved, but diastolic BP is now high. He also sees a nephrologist. His gfr is low 20's. Nephrologist says his labs are stable and acts like he is ok. His diastolic BP has suddenly gone up to 100 at times. I am afraid he is near kidney failure, but nothing is being done. The cardiologist only took him off a medication that was known to lower heart rate and told us to go to the kidney doctor for help with the blood pressure. I think we need new doctors.

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Hi, @anet – I've moved your post to this discussion where you were posting previously and connecting with others about stage 4 kidney disease. I'd also like to invite @randyr @jenniferhunter @valb68 @cpierce101604q @cgrammie2 into the conversation to talk about what treatments they or their loved one has received for kidney disease.

You mentioned you think you need new doctors. What are you thinking will be your next step, then, anet?

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@lisalucier

Hi, @anet – if you'd like to explore going to Mayo Clinic, you may request an appointment at this link online or via phone http://mayocl.in/1mtmR63

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Thank you. We have talked about contacting Mayo Clinic. We are going to see what this week brings in being more satisfied with his care. I think we need to be able to have a cardiologist and a Nephrologist in better communication with each other. Our primary care doctor is good but we have three doctors adding and changing medications and this is not good.

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Hi, my name is Alan, I'm 68 years old and I have stage 4 ckd. My gfr is 25, creatinine is 2.8. 20 years ago I was
diagnosed with bladder cancer, for the past 19 years I have had a neo bladder. One of my kidneys was blocked by scare tissue last year and was not detected until it was down to 15%. A nef tube was inserted with a bag to save what was left of the kidney, every 3 months it has to changed, out patient surgery. I would like to know if anyone has a reconstructed bladder for any length of time?

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@veteran

Hi, my name is Alan, I'm 68 years old and I have stage 4 ckd. My gfr is 25, creatinine is 2.8. 20 years ago I was
diagnosed with bladder cancer, for the past 19 years I have had a neo bladder. One of my kidneys was blocked by scare tissue last year and was not detected until it was down to 15%. A nef tube was inserted with a bag to save what was left of the kidney, every 3 months it has to changed, out patient surgery. I would like to know if anyone has a reconstructed bladder for any length of time?

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Hi @veteran, welcome to Mayo Clinic Connect. You may wish to read this discussion where @marcia_pez and @johnmclaughlin. John has been living with reconstructed neobladder since the 1990s.
– Bladder and prostate cancer, and neobladder reconstruction https://connect.mayoclinic.org/discussion/bladder-and-prostate-cancer/

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Inadvertently replied. Sorry Disregard. Best of luck.

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@s6885

Inadvertently replied. Sorry Disregard. Best of luck.

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Hi @s6885, Your original reply was very informative. Your experiences as someone living with stage 4 chronic kidney disease are a welcome addition to Mayo Clinic Connect. We look forward to getting to know you. Can you tell us more about the relationship of sleep, weight/diet, exercise and managing CKD?

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Okay, so I don't know if my post will get deleted because it does not follow conventional wisdom and my specialist didn't even ask me how the hell this happened, but….

I have stage 4 (late) failure at 22GFR. I've had kidney failure progressing over the last 10 years from damage to my kidney from Vasculitis and inflammation. My doctor set me up to get prepared to be a dialysis patient and to get on the transplant list once I lost 2 more digits on my function. He told me he believed this level of non function was my new normal and to prepare for the stage 5.

I figured what have I got to lose at this point, so I followed everything they told me about salt, potassium and which foods to avoid. I also went shopping for a herbal kidney supplement and started taking this supplement along with eating a full bowl of blueberries every night. I did this every day for 2 months and even bought some creatine test strips just for the heck of it. After about 7 weeks I tested my urine and found I was on the last color of 4 colors of kidney failure advancement. But I kept up the routine and eventually a few tests I was on the 3rd color (with color 1 being normal). I took it as a good sign but it was time for my checkup and I did my blood work, went to the doctor and he talked to me more about our plan for eventual dialysis. Then he looked at my record and said "Oh, by the way, your kidney creatine level went back to 2.2 from my 3+ recent readings. This means I went back to my 2014 readings (6 years ago). He didn't make much of a deal about it but told me I was back at early stage 3 now with this test. I don't think he believes I got a good test because he wasn't that excited. But I am… The home test I have since moved from the 4h block (the worst reading) to the first block (normal). I had my wife do the test and compared the sticks and we are the same color. Her kidneys are in perfect health.

Were is this leading? I think it's leading to me finding out I'm out of level 3 and closer to level 1 or 2. I could be even better but who can rely completely on a home test strip. Now what is happening to me defies everything we know about kidney failure and the progression to stage 5. Am I getting a miracle? I'll have to wait for my next checkup to know but the home test strips show me at totally normal function right now.

I'll tell you I've prayed and prayed for a cure and it didn't seem to help. This past Chistmas in church we exchanged cards with a prayer need and on my card I asked for Kidney health. I then did my regiment of taking a supplement called Premium Kidney Cleanse Supplement by Sunergetic (on amazon) and I eat that full soup bowl size serving of blueberries every night. The blueberries are not a snack, it's a bowl full. Between my prayer request, this suppliment and this supplement I truly believe I'm headed in a different direction with my kidneys. Prayer is answered but not always in some magical burst of light through the clouds. I think God answered my prayers and set me on this path that is healing my kidneys. I also take Turmeric Curcumin, Cinnamon (these block inflammation), OmegaIII, Resveratrol (alleged to activate your longevity gene), and COQ10 every AM with Cinnamon Toast. I also take 500MG of Niacin which produces a very unpleasant flush sensation. The flush is blood that runs through your tiny veins that gives your body a light headed heat rush and it's no fun, but the kidneys are about blood, yes? I can't tell any of you if this .. any of it, is changing me but think it is! The herbal supplement I take has hundreds of reviews of people that claim it improved their kidney function. I took it to be a lie… but now I'm not thinking it's a lie.

We all suffer some kind of base for our failure and maybe mine is different than yours. But I was told there was no chance of getting better. At this moment that seems untrue. If anyone would like to follow up with me, This is my real name and you can find me on Facebook. Send me a friend request. I know first hand what you folks are feeling. I see some hope now.

Liked by cehunt57, kamama94, geck

REPLY
@colleenyoung

Hi @s6885, Your original reply was very informative. Your experiences as someone living with stage 4 chronic kidney disease are a welcome addition to Mayo Clinic Connect. We look forward to getting to know you. Can you tell us more about the relationship of sleep, weight/diet, exercise and managing CKD?

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Ginger I hope you consider leaving my post. Something really good is happening for me. It might be of help to others.

Liked by cehunt57

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@lisalucier

Hi, @anet – I've moved your post to this discussion where you were posting previously and connecting with others about stage 4 kidney disease. I'd also like to invite @randyr @jenniferhunter @valb68 @cpierce101604q @cgrammie2 into the conversation to talk about what treatments they or their loved one has received for kidney disease.

You mentioned you think you need new doctors. What are you thinking will be your next step, then, anet?

Jump to this post

Lisa, read my experience. I think it is worth someone of medical knowledge to investigate and follow up on.

Liked by cehunt57

REPLY
@billagreste

Okay, so I don't know if my post will get deleted because it does not follow conventional wisdom and my specialist didn't even ask me how the hell this happened, but….

I have stage 4 (late) failure at 22GFR. I've had kidney failure progressing over the last 10 years from damage to my kidney from Vasculitis and inflammation. My doctor set me up to get prepared to be a dialysis patient and to get on the transplant list once I lost 2 more digits on my function. He told me he believed this level of non function was my new normal and to prepare for the stage 5.

I figured what have I got to lose at this point, so I followed everything they told me about salt, potassium and which foods to avoid. I also went shopping for a herbal kidney supplement and started taking this supplement along with eating a full bowl of blueberries every night. I did this every day for 2 months and even bought some creatine test strips just for the heck of it. After about 7 weeks I tested my urine and found I was on the last color of 4 colors of kidney failure advancement. But I kept up the routine and eventually a few tests I was on the 3rd color (with color 1 being normal). I took it as a good sign but it was time for my checkup and I did my blood work, went to the doctor and he talked to me more about our plan for eventual dialysis. Then he looked at my record and said "Oh, by the way, your kidney creatine level went back to 2.2 from my 3+ recent readings. This means I went back to my 2014 readings (6 years ago). He didn't make much of a deal about it but told me I was back at early stage 3 now with this test. I don't think he believes I got a good test because he wasn't that excited. But I am… The home test I have since moved from the 4h block (the worst reading) to the first block (normal). I had my wife do the test and compared the sticks and we are the same color. Her kidneys are in perfect health.

Were is this leading? I think it's leading to me finding out I'm out of level 3 and closer to level 1 or 2. I could be even better but who can rely completely on a home test strip. Now what is happening to me defies everything we know about kidney failure and the progression to stage 5. Am I getting a miracle? I'll have to wait for my next checkup to know but the home test strips show me at totally normal function right now.

I'll tell you I've prayed and prayed for a cure and it didn't seem to help. This past Chistmas in church we exchanged cards with a prayer need and on my card I asked for Kidney health. I then did my regiment of taking a supplement called Premium Kidney Cleanse Supplement by Sunergetic (on amazon) and I eat that full soup bowl size serving of blueberries every night. The blueberries are not a snack, it's a bowl full. Between my prayer request, this suppliment and this supplement I truly believe I'm headed in a different direction with my kidneys. Prayer is answered but not always in some magical burst of light through the clouds. I think God answered my prayers and set me on this path that is healing my kidneys. I also take Turmeric Curcumin, Cinnamon (these block inflammation), OmegaIII, Resveratrol (alleged to activate your longevity gene), and COQ10 every AM with Cinnamon Toast. I also take 500MG of Niacin which produces a very unpleasant flush sensation. The flush is blood that runs through your tiny veins that gives your body a light headed heat rush and it's no fun, but the kidneys are about blood, yes? I can't tell any of you if this .. any of it, is changing me but think it is! The herbal supplement I take has hundreds of reviews of people that claim it improved their kidney function. I took it to be a lie… but now I'm not thinking it's a lie.

We all suffer some kind of base for our failure and maybe mine is different than yours. But I was told there was no chance of getting better. At this moment that seems untrue. If anyone would like to follow up with me, This is my real name and you can find me on Facebook. Send me a friend request. I know first hand what you folks are feeling. I see some hope now.

Jump to this post

@billagreste Yes! And the right diet is a major factor in low or no progression and even some reversal, IMHO. And in my neph's opinion as well. And in secondary neph's opinion. And in pcp's opinion. Something similar happened to me, though not quite as dramatic an improvement as yours. I went from Stage 2 to Stage 4 before we even realized I had a completely dead left kidney . I immediately went on a renal diet and shortly after that a vegetarian renal diet and shortly after that went back up to stage three. (Check older posts for my recipe collection here.) Yesterday neph told me I was doing amazingly well and the diet was a major part of it. BTW, I could happily eat a whole bowlful of anti-inflammatory and anti-oxidant blueberries every day-they're delicious. I am so very happy for your progress!

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