Chronic Kidney Disease

arrabella · ‎03-12-2010

I have just been diagonised with Stage 3 Chronic Kidney disease and am finding the diet pretty confusing as food that has always been good for you, now is bad for the kidneys. I'll be seeing a dietician in the middle of July but even after searching the internet, and buying a couple of books, the diet seems pretty complicated. I understand the sodium, protien, potassium, but the phosphorus is something I've never had to deal with. The balance between the potassium and phosphorus is the most confusing as some foods are low in potassiun and high in phosphorus, and vice versa. Will also have my lab work done repeated in 2 months. I haven't been refered to a nephrologist and think my internest is waiting to see what my next lab results will be. Right now my fluids are not resticted. Any info would be appreciated or maybe a support groupwould be helpful.

TIA

gmkb · ‎07-29-2012

I am sorry you have this diagnosis. My father had chronic kidney failure and was on dialysis the last 5 years of his life. Please speak with the nephrologist and dietician with any questions you may have about your care. Diet is a very important part of treatment, which should be thoroughly explained to you by the medical personnel caring for you. Please don't rely on lay people's suggestions. I wish you well.

151949 · ‎03-09-2010

@arrabella wrote:
I have just been diagonised with Stage 3 Chronic Kidney disease and am finding the diet pretty confusing as food that has always been good for you, now is bad for the kidneys. I'll be seeing a dietician in the middle of July but even after searching the internet, and buying a couple of books, the diet seems pretty complicated. I understand the sodium, protien, potassium, but the phosphorus is something I've never had to deal with. The balance between the potassium and phosphorus is the most confusing as some foods are low in potassiun and high in phosphorus, and vice versa. Will also have my lab work done repeated in 2 months. I haven't been refered to a nephrologist and think my internest is waiting to see what my next lab results will be. Right now my fluids are not resticted. Any info would be appreciated or maybe a support groupwould be helpful.
TIA

if I were in stage 3 renal failure I would want to be taken care of by a nephrologist. What has caused your renal failure?

arrabella · ‎03-12-2010

@gmkb wrote:
I am sorry you have this diagnosis. My father had chronic kidney failure and was on dialysis the last 5 years of his life. Please speak with the nephrologist and dietician with any questions you may have about your care. Diet is a very important part of treatment, which should be thoroughly explained to you by the medical personnel caring for you. Please don't rely on lay people's suggestions. I wish you well.

Thanks for your response. No, I won't rely on lay peoples suggestions as I can see that the diet is pretty complicated. My goal is to keeping it from advancing any further. Really looking forward to seeing the dietician, and to add to the mix, my hubby is daibetic so food that is good for him, not so much for me!

Gram W · ‎01-22-2013

My husband also had it. Our nephrologists had a support group and a dietician who worked very closely with all his families. I would suggest that you ask to be referred to the specialist asap. Each patient is different and your program will be set up to suit your bodies needs. It was suggested that we not read books or get on the internet as this can be very confusing as you have found out. Medicine today is so much more advanced than when we dealt with it. Follow your caregivers instructions and take all of your questions and concerns to them. Your team will be the ideal support for you. We found that our team helped him manage this disease and gave him a quality of life we had not thought possible. He could not have a transplant because of other health issues but some in his support group did. God be with you in this journey. Keep your spirits up and make sure you ask to join a support group recommended or led by your nephrologists.

Gooday · ‎03-23-2010

@arrabella wrote:
I have just been diagonised with Stage 3 Chronic Kidney disease and am finding the diet pretty confusing as food that has always been good for you, now is bad for the kidneys. I'll be seeing a dietician in the middle of July but even after searching the internet, and buying a couple of books, the diet seems pretty complicated. I understand the sodium, protien, potassium, but the phosphorus is something I've never had to deal with. The balance between the potassium and phosphorus is the most confusing as some foods are low in potassiun and high in phosphorus, and vice versa. Will also have my lab work done repeated in 2 months. I haven't been refered to a nephrologist and think my internest is waiting to see what my next lab results will be. Right now my fluids are not resticted. Any info would be appreciated or maybe a support groupwould be helpful.
TIA

My husband had to follow this diet with a significant fluid restriction. I cannot speak to specific foods other than what you have posted. I can tell you that if you like to drink diet pop...get over it and the quicker the better.

My husband's case was unique in the fact that his kidney failure was not due to diabetes or polycystic kidneys. Many years ago he had his bladder removed due to stage IV bladder CA. Ureters were re-routed into the urostomy (bag). Within 6 months the urine backed up due to the narrowing and backflow of the urine causing one kidney to shut down. Finally, ureteral stents were used and every 90 days he went to special procedures for removal and insertion of new stents under fluoroscopy followed by blood work. That's how they knew the other kidney was failing.

He saw a nephrologist immedialy. (I would suggest you get your appointment sooner rather than later). He also got on the transplant list with Northwestern Memorial Hospital.

In the meantime, his creatinine was so hight at 8.2 that he was on dialysis for 5 hour sessions, 3 days a week. His graft failed within the first week of dialysis and he then had a fistula put in but they had to do dialysis through a port until the arm healed.

DH has been through a lot and he has turned 70 in January and doing well. He takes his anti rejection medications religiously and pretty much watches what he eats.

I do remember that while he was on dialysis, he would have given his kingdom to drink as much water or have a cup of soup as he wanted. It's the little things we take for granted.

Best of luck to you.

arrabella · ‎03-12-2010

151949--Have no idea what caused this and I highly doubt if my doctor does either. If I had to guess, it may be because of years of a high protein low carb diet, but that is just a guess. Must say I can't help but wonder why I started with stage 3 instead of stage 1. Will ask to be referred to a nephrologist after the next lab work is done.

sktchy · ‎03-10-2010

@Gooday wrote:
@arrabella wrote:
I have just been diagonised with Stage 3 Chronic Kidney disease and am finding the diet pretty confusing as food that has always been good for you, now is bad for the kidneys. I'll be seeing a dietician in the middle of July but even after searching the internet, and buying a couple of books, the diet seems pretty complicated. I understand the sodium, protien, potassium, but the phosphorus is something I've never had to deal with. The balance between the potassium and phosphorus is the most confusing as some foods are low in potassiun and high in phosphorus, and vice versa. Will also have my lab work done repeated in 2 months. I haven't been refered to a nephrologist and think my internest is waiting to see what my next lab results will be. Right now my fluids are not resticted. Any info would be appreciated or maybe a support groupwould be helpful.
TIA
My husband had to follow this diet with a significant fluid restriction. I cannot speak to specific foods other than what you have posted. I can tell you that if you like to drink diet pop...get over it and the quicker the better.
My husband's case was unique in the fact that his kidney failure was not due to diabetes or polycystic kidneys. Many years ago he had his bladder removed due to stage IV bladder CA. Ureters were re-routed into the urostomy (bag). Within 6 months the urine backed up due to the narrowing and backflow of the urine causing one kidney to shut down. Finally, ureteral stents were used and every 90 days he went to special procedures for removal and insertion of new stents under fluoroscopy followed by blood work. That's how they knew the other kidney was failing.
He saw a nephrologist immedialy. (I would suggest you get your appointment sooner rather than later). He also got on the transplant list with Northwestern Memorial Hospital.
In the meantime, his creatinine was so hight at 8.2 that he was on dialysis for 5 hour sessions, 3 days a week. His graft failed within the first week of dialysis and he then had a fistula put in but they had to do dialysis through a port until the arm healed.
DH has been through a lot and he has turned 70 in January and doing well. He takes his anti rejection medications religiously and pretty much watches what he eats.
I do remember that while he was on dialysis, he would have given his kingdom to drink as much water or have a cup of soup as he wanted. It's the little things we take for granted.
Best of luck to you.

Wow - I am freaking out because my creatine level is 1.60 - ! I am on anti-rejection medication and have monthly blood draws. My Transplant Team has told me things will be getting serious if the level reaches 2.0.

Prayers for your Husband, you and your Family. Good Health for your Hub's !!!

arrabella · ‎03-12-2010

@Gram W wrote:
My husband also had it. Our nephrologists had a support group and a dietician who worked very closely with all his families. I would suggest that you ask to be referred to the specialist asap. Each patient is different and your program will be set up to suit your bodies needs. It was suggested that we not read books or get on the internet as this can be very confusing as you have found out. Medicine today is so much more advanced than when we dealt with it. Follow your caregivers instructions and take all of your questions and concerns to them. Your team will be the ideal support for you. We found that our team helped him manage this disease and gave him a quality of life we had not thought possible. He could not have a transplant because of other health issues but some in his support group did. God be with you in this journey. Keep your spirits up and make sure you ask to join a support group recommended or led by your nephrologists.

I am planning to ask to see a nephrologist however with this health care system, everything has to be approved by a 3rd party and they don't seem to move too quickly. We also live in a rural area so there will be some travel involved. For now, am restricting my sodium to almost nothing and cutting way back on the proteins, and watching my potassium and phosphorus intake. And yes, I really want to join a support group!!

arrabella · ‎03-12-2010

@sktchy wrote:
@Gooday wrote:
@arrabella wrote:
I have just been diagonised with Stage 3 Chronic Kidney disease and am finding the diet pretty confusing as food that has always been good for you, now is bad for the kidneys. I'll be seeing a dietician in the middle of July but even after searching the internet, and buying a couple of books, the diet seems pretty complicated. I understand the sodium, protien, potassium, but the phosphorus is something I've never had to deal with. The balance between the potassium and phosphorus is the most confusing as some foods are low in potassiun and high in phosphorus, and vice versa. Will also have my lab work done repeated in 2 months. I haven't been refered to a nephrologist and think my internest is waiting to see what my next lab results will be. Right now my fluids are not resticted. Any info would be appreciated or maybe a support groupwould be helpful.
TIA
My husband had to follow this diet with a significant fluid restriction. I cannot speak to specific foods other than what you have posted. I can tell you that if you like to drink diet pop...get over it and the quicker the better.
My husband's case was unique in the fact that his kidney failure was not due to diabetes or polycystic kidneys. Many years ago he had his bladder removed due to stage IV bladder CA. Ureters were re-routed into the urostomy (bag). Within 6 months the urine backed up due to the narrowing and backflow of the urine causing one kidney to shut down. Finally, ureteral stents were used and every 90 days he went to special procedures for removal and insertion of new stents under fluoroscopy followed by blood work. That's how they knew the other kidney was failing.
He saw a nephrologist immedialy. (I would suggest you get your appointment sooner rather than later). He also got on the transplant list with Northwestern Memorial Hospital.
In the meantime, his creatinine was so hight at 8.2 that he was on dialysis for 5 hour sessions, 3 days a week. His graft failed within the first week of dialysis and he then had a fistula put in but they had to do dialysis through a port until the arm healed.
DH has been through a lot and he has turned 70 in January and doing well. He takes his anti rejection medications religiously and pretty much watches what he eats.
I do remember that while he was on dialysis, he would have given his kingdom to drink as much water or have a cup of soup as he wanted. It's the little things we take for granted.
Best of luck to you.
Wow - I am freaking out because my creatine level is 1.60 - ! I am on anti-rejection medication and have monthly blood draws. My Transplant Team has told me things will be getting serious if the level reaches 2.0.

Prayers for your Husband, you and your Family. Good Health for your Hub's !!!

First of all, thank you for your prayers. I'll keep you in mine.

There is so much to learn about this disease, so far my potassium, phosphorus and sodium serum levels are within normal limits but the BUN/Creatine ratio is high. Also the GFR is high, not sure what that is but will absolutly have a discussion with my Md on the next appointment. Just praying I can keep this from advancing any farther.