topic Re: Chronic Kidney Disease in Wellness

Chronic Kidney Disease

arrabella — Mon, 20 Jun 2016 18:19:04 GMT

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

Re: Chronic Kidney Disease

gmkb — Mon, 20 Jun 2016 18:33:44 GMT

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.

Re: Chronic Kidney Disease

151949 — Mon, 20 Jun 2016 18:48:05 GMT

@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?

Re: Chronic Kidney Disease

arrabella — Mon, 20 Jun 2016 18:51:36 GMT

@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!

Re: Chronic Kidney Disease

Gram W — Mon, 20 Jun 2016 18:52:23 GMT

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.

Re: Chronic Kidney Disease

Gooday — Mon, 20 Jun 2016 18:53:50 GMT

@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.

Re: Chronic Kidney Disease

arrabella — Mon, 20 Jun 2016 18:58:56 GMT

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.

Re: Chronic Kidney Disease

Cookie2025 — Mon, 20 Jun 2016 19:02:26 GMT

@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 !!!

Re: Chronic Kidney Disease

arrabella — Mon, 20 Jun 2016 19:09:56 GMT

@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!!

Re: Chronic Kidney Disease

arrabella — Mon, 20 Jun 2016 19:27:03 GMT

@Cookie2025 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.

Re: Chronic Kidney Disease

lucymo — Mon, 20 Jun 2016 20:13:21 GMT

@arrabella. My creatine level is 1.5 and my family doctor has already referred me to a nephrologist. I am not restricted on anything right now but they have changed some meds and last blood work was a couple points down. They think meds are causing my numbers to be higher than they should be. Please my only advice is get to the nephrologist as soon as you can, they know what to do now. Pràyers for you.

Re: Chronic Kidney Disease

151949 — Mon, 20 Jun 2016 20:21:15 GMT

I had one kidney removed due to cancer in 1991. Since then I have done fine until last spring when my GFR went down to 45 and my creatnine rose to 1.2 - I freaked out. I have many friends who are in the dialysis field and nephrologist friends - went to see one and he discovered I was taking 2 drugs that were not compatible together. Unfortunatly once you lose nephrons they do not come back so my GFR is still at the 45 to 47 range. My friend tells me this is an OK number for having only one kidney. I am considered stage 2 renal failure but since it is not progressing any worse I am content - just try to push fluids a lot. I also must be very careful to not get a UTI as I have been prone to them since I had my nephrectomy. I eat and drink cranberries & cranberry juice like it is my lifeblood.

Re: Chronic Kidney Disease

feline groovy — Mon, 20 Jun 2016 21:53:19 GMT

Sending positive prayers & good energy to you, @arrabella.

Re: Chronic Kidney Disease

Reba055 — Tue, 21 Jun 2016 00:12:42 GMT

@arrabella I hope you do very well. I'm sure a diagnosis like that is overwhelming. Sending positive thoughts your way!

Re: Chronic Kidney Disease

arrabella — Tue, 21 Jun 2016 06:51:31 GMT

@lucymo wrote:
@arrabella. My creatine level is 1.5 and my family doctor has already referred me to a nephrologist. I am not restricted on anything right now but they have changed some meds and last blood work was a couple points down. They think meds are causing my numbers to be higher than they should be. Please my only advice is get to the nephrologist as soon as you can, they know what to do now. Pràyers for you.

I'm looking forward to seeing a nephrologist so we can go over my meds and the suppplements I take. I haven't been restricted either, however I'm really watching my sodium intake more carefully as I also have high blood pressure. What I have been told is to drink a lot of fluids and not to take any nsaids. When I see the dietician next month, I'll bring a copy of my lab work as well as my medication list.

My prayers are with you too!!

Re: Chronic Kidney Disease

arrabella — Tue, 21 Jun 2016 07:01:10 GMT

@151949 wrote:
I had one kidney removed due to cancer in 1991. Since then I have done fine until last spring when my GFR went down to 45 and my creatnine rose to 1.2 - I freaked out. I have many friends who are in the dialysis field and nephrologist friends - went to see one and he discovered I was taking 2 drugs that were not compatible together. Unfortunatly once you lose nephrons they do not come back so my GFR is still at the 45 to 47 range. My friend tells me this is an OK number for having only one kidney. I am considered stage 2 renal failure but since it is not progressing any worse I am content - just try to push fluids a lot. I also must be very careful to not get a UTI as I have been prone to them since I had my nephrectomy. I eat and drink cranberries & cranberry juice like it is my lifeblood.

Sorry to hear that you had to have a kidney removed. I don't blame you for freaking out over the change in your lab work! You are fortunate to have so many friends who are so knowledgable in the field. This thing kind of blindsighted me. Kidney Disease never really crossed my mind! Best I can do at this point is to try to keep it from advancing as I an deal with it at this stage. I do take a cranberry supplement, as I have had UTI's in the past.

Re: Chronic Kidney Disease

arrabella — Tue, 21 Jun 2016 07:03:49 GMT

Thanks to all for your prayers and good wishes!!

Re: Chronic Kidney Disease

151949 — Tue, 21 Jun 2016 16:34:23 GMT

There are so many causes for kidney failure and unless you know what is causeing it you can't really take any steps to stop the decline. It could be BP, arterial stenosis, diabetes, meds,cysts - good heavens , many things. I was lucky it was just a med change required, but my PCP was clueless about it. The nephrologist put all my meds into a computer program and it immediately told him which ones were not compatible.

Re: Chronic Kidney Disease

arrabella — Thu, 23 Jun 2016 09:59:24 GMT

@151949 wrote:
There are so many causes for kidney failure and unless you know what is causeing it you can't really take any steps to stop the decline. It could be BP, arterial stenosis, diabetes, meds,cysts - good heavens , many things. I was lucky it was just a med change required, but my PCP was clueless about it. The nephrologist put all my meds into a computer program and it immediately told him which ones were not compatible.

Sounds like you have a really great nephrologist!! The only thing I know at this point is it's not diabetes. I think most PCP's are clueless when it comes to this disease.

Re: Chronic Kidney Disease

chiclet — Tue, 12 Apr 2022 14:00:10 GMT

@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

I was told by my Family Practice doctor I need to see a Nephrologist for stage 3 kidney disease. I can't see him until June. I need to lose weight and am doing research to decide what might I eat to not make kidneys worse. It seems everything is bad for them. I was wondering how you have fared with it all if you don't mind my asking.