Wanting to know if how many of you have been following a kidney diet and have found that it has helped your creatinine values go down and your gfr value go up? Is there any of you that have followed one of these diets and it did not help these numbers to improve? In either experience, please describe the diet and tell how it improved/or not...your numbers please.
Do KD Diets help maintain/better kidney fun... - Kidney Disease
Do KD Diets help maintain/better kidney function?
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Dllfb
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When I received the diagnosis my GFR was 32. My next one was 35. I met with a renal dietitian went over my labs and the RD and I developed a kidney-friendly meal plan. I've been on it for almost 4 years and my GFR has averaged 52.I follow it and make the necessary adjustments to keep my numbers within the limits of the reference range.
It's part of a lifestyle change that includes exercise, keeping underlying conditions under control, medications, and determination.
If you're serious take the first step. You can be successful.
EYatNKFSvdMYLIF in reply to
Love this!
HarryStyles1981 in reply to
Hi Mr_Kidney, you are doing good with your eGFR, just wanna know if you are still eating animal foods?
in reply to HarryStyles1981
Yes, since I'm still at Stage 3. Should I drop into stage 4 I'll have to limit poultry to once every two weeks and seafood to twice a week. As the GFR decrease, I'll continue to make additional changes.
orangecity41NKF Ambassador
I was diagnosed with CKD level 3b 5 years ago. I was put on diet based on bloodwork. I am restricted on phosphorus, potassium, and sodium. So far the progression of CKD has slowed. I also do an average of eGFR and is 58. Here is a link to information on eGFR stages. kidney.org/atoz/content/gfr
Oh good...and what was your gfr level when you started this diet please?
eGFR was 52.
So it’s gone up then...that’s great!
53 to 58 shows she is running steady not real improvement but no futher decline either so in short the answer ias yes to your question. Renal diets are very carb laden so dont eat sweets though they are allowed in it and limit your carbs to a large extent to kidney friendly vegetables. You dont want to run. The risk of developing Type 2 diabetes if you have a genetic disposition to it as that can exacerbate kidney disease.
After posting my post below and reading the above comment I replied "Love this." Now as read all these comments I am going to repeat this comment because you all are phenomenal. I understood not many did what I did and its great to hear how you all are doing and how it's helped you. Wish all continued determination. You are doing great!
Thank you for the wonderful words of encouragement for us all.
I was only told about my CKD in Nov last year, though I’d had it for at least 10 years and at least two doctors had failed to inform me. Having found this forum, someone who’d made great changes to their numbers recommended Lee Hull’s book “ Stopping Kidney Disease “ . I bought them ( one huge tome full of research and the other a short recipe book) and read them ( no hope of a renal dietician in the U.K.- there are only a handful of them and the closest is in London) in just three months my eGFR has gone from 51 to 57 and I feel SO much better. In essence the advice is plant based, but wary of beans and sources of high protein, water- lots of it- up to two small cups of coffee a day, up to 5 small glasses of red wine a week ( no other alcohol, no processed foods, no charred foods. Follow your sodium, potassium and phosphorous levels and avoid foods high in these minerals if your blood results indicate to do so.
Great question.
That’s good..so if wRy about beans, where do you get your protein from in this plant based diet please?
Vegetables all have proteins in them. My eGFR is now 57 so I’m happy with brands and lentils. But for people with stage 4 and 5 they’ll need to be more cautious.
Have you tried the Beyond Meat Beyond Burgers? They are available at Costco and are 100% plant based and vegan and are absolutely delicious when cooked properly. They are a bit high in sodium, but if that (and a hamburger bun) is all the sodium you have all day, then you'll be fine. I believe that a Beyond Burger with bun is around 900 mg of sodium.
I shall do now ! Thanks
After posting my post below and reading the above comment I replied "Love this." Now as read all these comments I am going to repeat this comment because you all are phenomenal. I understood not many did what I did and its great to hear how you all are doing and how it's helped you. Wish all continued determination. You are doing great!
Hi, SkiingSailor, I think it was I who recommended Lee Hull's book to you (please correct me if I am wrong). Anyway, I am really glad that you are doing well following Mr. Hull's advice which is 100% based on current medical research and is a plant based diet.
It truly is a shame that every person with CKD does not buy Mr. Hull's book, read it to truly understand what CKD is all about, and follow his meticulously researched plant based diet plan -- and that goes for primary care physicians as well.
I thank you from the bottom of my heart ! You have new hope when I was in despair, reeling from my diagnosis ! I completely agree. Doctors are SO out of date! That’s if they care at all !
I now have had more blood tests and great results! Sodium potassium and lipids all in normal range and eGFR is 73 ! So a further big thank you.
Hi, SkiingSailor. You are most welcome. Wow! So your eGFR went from 51 to 73!! Congratulations!! What an incredible job!! So you are now well into Stage 2!!
Please contact Mr. Hull through his website (it's in the book) and submit your story. I submitted my story of going from 42 to 58 eGFR and he set up a video interview with his assistant which was recorded, edited and put up on his website.
Do you mind sharing with me and the others your new daily diet routine and new eating habits in greater detail? I might have slipped a bit. I just had my lab work done two days ago, but I never even made it into the 60s. I can use advice from someone who has done so well.
I've been following a hypothyroidism, hyperparathyroidism & CKD diet for the past 3 years. I don't eat potassium, phosphorus, calcium, caffeine, greasy, spicy, fried foods. My Levothyroxine was increased a little bit and I've lost 8# in the past 2 weeks. I was on 120 ounces of water for dehydration and creatinine was increasing. Now I'm down to 60 ounces of water and my creatinine in going lower. I also don't eat dark green vegetables. I get Procrit shots when my hemoglobin drops below 10.0 it's gone down to 8.6. Every other month it seems to go low.I had to give up Protonix and Demerol as they both cause CKD. I'm on Sodium Bicarbonate for Gerd 3x daily now. I've been down to stage 5 and immediately got rid of everything not on my diet. I went from 15 up to 38 in the past 6 months. I'm staging at 3a now. I also play catch with our new puppy. I throw the ball, dog stares at me and I travel all over backyard to get the ball. He's got me trained well. All of that walking helps me lower my weight. I focus on my creatinine and eGFR. My BUN, Potassium, Calcium, Sugar and phosphorus levels are back to normal. I still have a cyst on my left kidney that's starting to collapse. I have mobility issues and get kidney stones often. But I'm hopeful I'm working toward increasing my eGFR.
SkiingSailor in reply to
Sounds like you’re doing really well ! I have hypothyroidism too, but it’s taking all my energy to focus on the CKD for now. What’s your top tip for dealing with both ? ( I already eat a plant based diet and walk about 50 miles a week)
EYatNKFSvdMYLIF in reply to
After posting my post below and reading the above comment I replied "Love this." Now as read all these comments I am going to repeat this comment because you all are phenomenal. I understood not many did what I did and its great to hear how you all are doing and how it's helped you. Wish all continued determination. You are doing great!
Dear Dllfb,
I am a registered nurse who has had hypertension for 30 years and had a recent 3 year history of NSAID use due to back and hip problems (corrected by surgeries). In addition, I followed a high protein, low carb diet, including 2 eggs every morning. As a result of these factors, my creatinine was 1.85 and GFR was 28 last February, 2020. My internist took me off Dyazide and again recommended a low salt diet. I immediately did my own research and found that animal protein is hard on kidneys. I switched to a Whole Food, Plant based diet, with very little oil, salt, sugar, and limited potassium. I also drink a lot of water and do aerobic exercise daily. Since then, my creatinine and GFR have improved with every lab result. Creatinine is now 1.03 and GFR is 56. I am so thankful to have discovered what my kidneys need to recover.
Wow ! You’re doing well! I do wish that doctors would point us all in the direction of needing to change when eGFR’s first become low, rather than waiting and ignoring it !
Exactly! Here’s to health!
After posting my post below and reading the above comment I replied "Love this." Now as read all these comments I am going to repeat this comment because you all are phenomenal. I understood not many did what I did and its great to hear how you all are doing and how it's helped you. Wish all continued determination. You are doing great!
Wow that’s wonderful! Good for you!
As I edit, please excuse this previous post that was one long paragraph. This may be easier to read. This post is not meant to overwhelm anyone. Perhaps one paragraph can assist someone in any form. Read only what you can take and in spurts. This was just what I learned from NKF along my way, which is what helped me get to where I am right now.
At age 36, I got sick and after being referred to a nephrologist, he informed me I had kidney disease for almost 20 yrs. It was actually 14 yrs due to a medication I was given at age 22, which 20 yrs later turned out to be a misdiagnosis. In 2002, I instantly got in touch with NKF of Greater NY. I volunteered to help with the Kidney Walk for them and by trying to find sponsors, I went to my doc's office. They didn't sponsor me but coming out of the doctor’s office to the right was an unfamiliar adjacent doorway to what years later I would learn is the dialysis center. A dietician happen to walk out of that door as I walked out of mine, who I engaged in conversation within that corridor. She told me I needed a Renal nutritionist which was the first time I ever heard of a "renal" one. I had already been with a regular one for 2 yrs, but it wasn't working well unknowingly to me at the time. This dietician referred me to the right one. I contacted this person who worked with my doctor about the limits I needed to follow. The difference she made was immeasurable.
I also went by train 90 minutes up to NYC for the Kidney Walk where I was a volunteer at the Check In. At the time, I had a torn cruciate and back sprain due to my sudden weight gain when the 1st symptoms began. I had 8 months of 38 specialists I went to before a Rheumatologist did a blood test and told me I needed to get to a Nephrologist, which I had never heard of before. He said my creatinine was very high at 1.9. I was very ill prior to engaging in this Kidney walk. Yet this is how I found this miraculous Renal Dietician who was the only one in my area. I only had one sponsor for my walk, yet by engaging in seeking sponsors, I found a gold mine. Randomly bumping into someone coming out of my Nephrologist's office led me to the right person I had never heard of before, a Renal Nutritionist. She is why I was able to sustain my kidney disease progression giving me an extra 5 years before I began dialysis.
Having traveled up NYC to the NKF office for this Kidney Walk meeting, they were all so gracious they gave me a round of applause. I left there with all this information this wonderful person generously gave me. Having my own now correct specialist dietician at home and now all of this information NKF gave me in NYC, they would be my contact over the next 15 yrs. I became very close with the Program Director until her retirement and the Nurse they used to have in their office was a lifesaver. I would call the NKF RN all the time from the grocery store each time I forgot things I needed to know about dieting.
The information packet and the info the mailed me or told my about on the phone through the years is priceless. Among the info I came home from NY with were these Lab Logs from Amgen. I would get a copy of every single lab report I had done every 10 wks throughout CKD to ESRD. The habits learned from this even came in handy on dialysis and after Transplant. I would track my labs by copying what info was on the lab report onto the NKF Amgen Lab Logs. With this Renal nutritionist I learned how to eat. With the info from NKF mailed to me I received the NKF Cookbook, "Living Well on Dialysis" (their chili is the absolute best). I also learned what was ahead with lifestyle changes etc. All this information remains on my bookcase I am looking at right now as I type.
To this day, this one-day meal plan I received from my Renal Nutritionist is on my bulletin board in my kitchen. When I found out I had kidney failure at age 36, my GFR was 45 and my creatinine was 1.9. I was given 5 to 10 years before dialysis was to begin. This one-page menu on my bulletin board, I ate every day for 6 years. Over time, I learned just by looking at one page how to switch it up. If I had an egg in the morning I had pasta at night. I was only allowed 4 oz of meat and 2 liters of liquid per day. Me, who was always perfectly healthy, who never had to diet or ever dieted before, this was so foreign to me. I never thought I could learn how to do it. Yet this info was priceless. By the time I learned, all I only needed to look at that was that one-day menu to know what to do. My kitchen walls were full of pages or printouts tacked onto it , which most remain there to this day. My Renal Nutritionist brought my creatinine down from 2.1 to 1.9 in 6 months. I was later able to keep my creatinine at 2.5 for 3 years simply by following that one-page menu. Mind you I read all the other info first before I learned how to perceive only one page.
I also received packets of information from NKF mailed to me that I used as well. They sent me a newspaper from Dialysis Patient Citizens, which had an article discussing the importance of getting muscles in shape for dialysis. I, then, took a job as an Asst Mgr at a convenience store I used to work for in my 20s. I knew that would get me in shape and it did.
I had learned about my kidney failure on April 2, 2002. I made it the 10 years and didn't begin dialysis until March 2012 which was my 1st PD Catheter surgery of what would be several. I was told often by all throughout CKD that no matter how much I learn nothing prepares you for dialysis or transplant and believe me it doesn't (especially the common abuse on dialysis I endured but that is a whole separate topic). Yet the information I received and learned, the diet and exercising I did, I know gave me the perseverance to endure throughout. My connections from keeping in touch with NKF quite often from their free 800 phone number, I learned precious tips such as I could get on a transplant wait list at 20% when my doctors told me I had to wait until I was at 15%. For myself, information as well as tracking my labs gave me a sense of control. It also kept my weight and muscles toned and I know my being proactive got me this kidney. I am now 6 1/2 yrs into my kidney transplant. My per-Transplant Coordinator said I was "The most proactive patient she ever knew."
I am now 55 years old.
From age 36 to here is a long battle even stable, yet for me it all came down to the doctor, the medications and yes diet and exercising, which is key. With the habit of using the Lab Logs I would track what date I got shots such as Pneumonia Shots on it. Then a few years later my first months on dialysis the RNs at the Dialysis center wanted to give me a Pneumonia Shot. Yet when they called my doctor to find out if I had one already, my Nephrologist's office did not know they destroyed all my records and only had 1 year and 1/2 's worth. In my State where I live, they only keep records for 7 years. Today its only for 2 years. However, when I first found out at age 36 to my utter complete shock I had kidney failure, I immediately collected all my records from my Primary Care Physician and all my doctors. By using the Lab Logs, I got a copy of my blood tests every 10 weeks from my Nephrologist office and other Doctor's offices thereafter. I also purchased my records from docs through each stage or time with them.
Very recently my Primary Care Doctor was suddenly gone as I received a letter saying they no longer are in business from the Hospital. Over these decades, my Internists would be forced to merge with large hospitals as they can no longer afford to operate on their own. However, this creates problems as they lose a lot of freedom with their patients. I lost 3 Primary Care Physicians since Transplant who were bought out by the hospital or they closed their practice quitting medicine all together and I never see them again. When that happened to me 2 years ago with my Primary Care Doc I had for 20 yrs, the hospital notified the patients suddenly a month after the practice was closed. They gave me 2 weeks to get my records, I only received 2 pages worth after 20 yrs. Well, it didn't matter because I have 20 years of copies of all my blood tests and records from them as somewhere 10 yrs prior I had purchased all my records at that time. I bought my dialysis and transplant records too. Its expensive but worth it. So by having used these Lab Logs, when the RNs at the Dialysis Center called my Nephrologist that day to find out if I had a Pneumonia Shot of which they only give 2 in a lifetime, when the doctor's office didn't know because they rid my records, I went home, pulled out my Lab Logs, which are large legal size cardboard paper, and flicked through them like a card deck. Instantly, that info was there in red circled in these Logs. I had the Pneumonia Shot done 5 years earlier. Then I was able to get the Pneumonia Shot at the Dialysis Center along with other shots.
I would not have learned how to do all of this or have been so prepared and proactive for these situations described above, if not for the wonderful people at NKF. I use that recording system to this day, but now I don't need to track the labs as I know already just by reading the labs and keeping a copy of each lab in each Doctor's folders I created what my numbers are. I know in my future, I will be using these Lab Logs to track my labs again but for now I don't have to, my kidney is stable. After transplant they go by the creatinine, but I go by both the creatinine and GFR anyway. And I stick to that diet too, the diet that is appropriate for each stage. From dieting I learn that even when I cheat on a diet I never really do. I am in the habit unconsciously of knowing what to eat. I only have to watch my potassium and salt. Sugar in my case isn't an issue I am not a diabetic, but I don't eat much sugar anyway. I still have the habits of dieting from what I learned as it changes through each stage, but after transplant that is different. I asked NKF because after my transplant I got confused out of habit in my thinking that the Transplant Center was like NKF and that I would have all the one-on-one consistent information I was used to. However, no they don't give you the amount of info or attention, the Foundations do. Since my experience, I highly recommend Foundations to anyone I talk to for which ever disease they have. I asked NKF about the diet to follow with my transplant they suggested to follow the Heart Healthy Diet from the American Heart Association and to talk and confirm this with my Transplant Dietician and Doctors directly with my particular health. They were right.
There are many diets I had to learn as my kidney declined and then there are different ones on dialysis and transplant. Yet in my case I was in limbo for several months before Dialysis that was to begin. In between that time the Dialysis RN could not tell me a specific diet, but she did give me a chart on what to and not to drink. That was a little tricky as it was not thorough. I had planned for PD dialysis for 8 years, but it took 10 months and 4 PD catheter surgeries and 3 procedures to get me onto PD Dialysis for many reasons. PD catheter surgeries are easy just in my case the 3 PD catheters leaked after each surgery. For myself, I was lucky to be able to do PD a that is what works best for my body. I am 6 1/2 years into an 8–12-year cadaver kidney that I may possibly be able to make last to 20.
For other reasons I am not in the amazing shape I was before but am presently getting back in it. I already have the tools I have learned with dieting. NKF taught me. When I kept my creatinine at 2.5 for 3 yrs, I didn't care if I was a pain to the doctor’s office workers, I got a copy of my labs each visit. By tracking them and by that menu I ate every day for 6 yrs, if I went off my diet in any way, I knew by reading the labs, if the BUN was high, why it was and what it was I ate that made it high. I chose to be this strict. This became and interest and a challenge of mine to myself. I knew if the BUN was high which food I ate that caused it. That is my own belief that with my sticking to the diet so strictly it was my personal study of my own body. That was my own approach. I made a game of it so it wasn't so redundant, but I am the type of person that education calms me down, it doesn't make me more anxious. So in that terrifying fear it gave me a sense of control.
Another example of how tracking the labs and matching the blood tests to what I ate helped, not only did it help me diet, knowing my numbers helped me help the doctors in an Emergency. In End Stage Renal Failure I had to go to the ER for a UTI, but the ER doc couldn't give me an antibiotic medication at that point. However, the ER doc was so impressed I knew my numbers he smiled and in fun, challenged me asking if I knew what my creatinine clearance was. Ha- Ha, I did. From that exchange with my knowing my numbers he then pondered for a few seconds and said he was going to check the PDR (their Physician Desk Reference book of medications) and when he came back he said yes he could give me Cephalexin, but at a lower dosage. My knowing my blood tests not only pleased him and gave me something to ease the infection and pain, it also brought me more respect as a patient. That never hurts. What the NKF Amgen Lab Logs also had on their forms were a description and definition for each item in the lab report such as Serum Creatinine, Chloride, Hemoglobin, Hematocrit etc. which really helped understand the lab reports.
It seems like a lot of work and I took it further as each doctor hospital's blood tests have different ranges for each item on the tests, such as Creatinine, Hemoglobin, etc. I just put them in a different column next to each other with the Name of the facility. That came in handy because my Nephrologist uses a different than the Transplant Ctr. The Transplant Center no longer shows the GFR above 60. So now during COVID if my telehealth appt shows my Tacrolimus level that that the Transplant Center is letting be a little high as its better than low, when that level is from my Nephrologist Office Labs, their range can be alarming on their reports. So I am able by knowing this to keep both Doctors’ Offices apprised as perhaps I missed a dose. They do a retest but for myself I don't get that alarmed, I get concerned enough to know to give more attention with the next lab report but know not to panic and for me that saves a lot of worry. I have now been doing this since 2002. Yet I did learn something new this month I never knew. I don't track my labs logs like I did, I read them thoroughly. Apparently not so well as I never knew they tested me for Epstein Barr. I knew about BK Virus and the others. My recent test had to be redone because they didn't get the labs as I am using a mobile phlebotomist during COVID. These lab logs are good for my memory too, which declined so easily in End Stage and on Dialysis and even with transplant at times for other reasons.
Tracking seemed like a lot of work especially when so sick, yet it isn't if you do it at your leisure with no pressure. This is just an interest of mine. There is plenty of time to take your time to do it if anyone chooses too. I was just running for my life in fear. I was also younger, and my body was compensating from 36 to 46 when I began dialysis. No doctor can by law or by their insurance tell me this information I was given from all the packets and the incredible precious relationships I met along the way who were so helpful at NKF. What a gift it was to those I was able to verbally speak to on the phone. Being 90 minutes away and only being able to travel up to NYC twice, I had the most rewarding relationships from such generous people with their time. As with each individual you find your own method along the way of what works for you. The one doc I had would say "You are still trying to do this with diet and exercise." Yes he gave me meds and I even did a clinical trial, but I believe its all-encompassing. Diet and Exercise is the key to all if you can do it or are at the stage you can do it. That's what I did for myself. I am not here to tell anyone what to do, each person has their own medical history. Diet is the key to all because what you put inside your body you are you putting into your own chemistry. Your body will let you know what it likes. I know when told in 2002 I had 5 to 10 yrs, dieting gave me that extra 5 years to make it to 10 yrs before dialysis began.
Not many know until the year or few months before dialysis they have kidney failure. In 2004 when I came to NKF, I first learned of the Dialysis Centers and their names. At the time I had a doctor my age who did not quote "Like to make his patients anxious." I attended College late at age 36 as this kidney failure developed during my first semester. I was determined with my curiosity. So I didn't wait for him or the years ahead ha ha, I instantly went to the Dialysis Center in my area and introduced myself to someone I would know over the next 10 yrs. I attended in 2004 their class they held at the center. Ha ha during it my luck my doc stopped in to ask the RN something. He didn't want me to worry for years ahead. Well to my shock everyone there in my class only found out they had kidney failure the week before, or months before and this much older woman in her 60s was a night RN and didn't find out until the year before but working her schedule she didn't realize dialysis was to begin. I stayed quiet but the information was important, for me to learn how to diet when I never had before seemed very difficult. They had discussed the process of leaching potatoes which I never heard of etc. Yet here I was with a GFR of 29% and some were going right into dialysis after this class. I did feel guilty, and my heart was there for them but together with them I was nervous and in shock having discovered this news of my new condition. It is scary. I don't know if today I could do all that I did at 36 to 49 before transplant again here at 55. I do know I am much more prepared as to what to expect should this kidney decline, yet no I am never really prepared for that. That doesn't stop the fear of that. I got lucky very lucky, I found out early. Prevention and Proactive is Key.
NKF has come a long way since 2002. Thank you Ellen and Theresa who have since retired and thank you NKF of Greater NY and NKF.org because now they have this great website in these present years this decade. More so with Dialysis Patient Citizens efforts throughout they just got passed in Congress extending Medicare passed the 3 years it would end after transplant. That information changed the course of my life back in 2002. I am too young still for a secondary insurance and I did not have any family or friend support throughout until dialysis and transplant. So I went on Disability at age 36. It saved me. I am so excited that everyone now doesn't have that cut off time and now have this progress they made with the medication coverage in the U.S. I didn't learn about Dialysis Patient Citizens until I received their newspaper in the original packet.
I wish everyone good feeling days if not good feeling moments. Each modality has its own process. A transplant is not a cure, it’s a modality and in my case fortunately the best one. In each stage I wish all good feeling moments because there is nothing more priceless. I do not forget ever. I do know it I will be on dialysis again in the future. I have different challenges for different reasons, yet it still comes to diet and exercise of which I must do that I have not. All I have to do is look at what I kept on my kitchen wall all this time and what I already learned from CKD, Dialysis and Transplant thanks to NKF and their recommending after my transplant, diet info from the American Heart Association. There was a symposium NKF had not too long ago or perhaps it was. My time consciousness is different than others and 10 yrs is only one long day for me. But back in closer to 2011 there was a Symposium that included NKF, the American Heart Assoc. (AHA) and the American Diabetes Association (ADA) as they learned all three overlap and go hand in hand. That is true because the medications from Transplant could eventually cause Diabetes which is why watching sugar is important. In my case because I never had diabetes that most likely won't be my case, yet it doesn't mean I don't track it. I notice it. However, having learned to diet from NKF which led me to the Renal Nutritionist, I already diet without knowing it and my going off my diet is never really going outside the bounds of Kidney Disease. That became unconscious.
After transplant you no longer have kidney disease so to speak and depending on the medications you take there are things you must watch. Mine can elevate potassium. I just don't realize I don't eat much sugar. I do though eat more sodium and that raises potassium. So not until this month have I ever did anything like I just did which is sign up for MyFitnessPal online, because they had a free trial. In it I was able to figure out how to add Potassium in their slots to track. For that reason I signed up for the paid subscription. They have a free one. Researching online, I read their website is the one out of all similar sites that has the most food brands listed on there. I didn't realize just how much sodium I was eating. I am limited to 2000 mg of sodium and 1500 of potassium and by looking at the chart they had for a range of 30 days, it shows the I was way above 2000 mg way more often. Since then using MyFitnessPal almost daily, the past 3 weeks now shows just how much I reduced my sodium and have been within limits since following their website. Their website also tells you which foods that week, month, or 3-month etc you ate were the highest in Sodium Potassium Cholesterol etc etc. You can even track exercise if you want. I said the other day if they can find one like that for NKF whoever creates that website would make the bucks ha ha.
I was told after transplant to drink 4 bottles of water a day. I once got my GFR up to 76 and creatinine staying at 0.8. with my Nephrologist's Labs but since transplant my Transplant Center's Lab's show my GFR stayed at 59. I was dehydrated in one of my labs and my Nephrologist told to go up to 5 bottles or glasses per day. Well my using bottles 16.9 oz bottles in the hospital, I used the same bottles when I got home from the Transplant. (I didn't realize until someone who delivered the cases from the store 2 years ago, who suggested I should get a spring water cooler service, that one was right around the corner from me all these years. What I would have given for that service on dialysis had I thought about it. I went to school with the owner the thought just never entered my mind. Well ever since I had been drinking five 20oz glasses of water per day. My GFR has risen from 59 on the Transplant Centers Labs and up to 78 on my Nephrologist's Labs the last 2 yrs and though they go by creatinine mine stays at .8 and .9. Mind you the Transplant Centers Labs have a range that shows the GFR at 59 and don't count the GFR above 60 , whereas the range on my Nephrologists' Labs do and their range is different than the range of the Creatinine and the rest of their components than the Transplant Center. They focus on the Creatinine after Transplant, but I like focusing on both because when I do well I find these numbers that rise gives me such a boost. It makes me feel good. I do know my Nephrologist notices the GFR.
That was the amazing part of my Transplant Surgery watching the numbers the RNs put on the board of my GFR and Creatinine going down. I knew my numbers and for the 1st time since age 22 because I never knew I was sick then from the medication given, my new kidney was functioning at that level then, which is how I interpreted my transplant during my time in the hospital with my new kidney. Finding ways to elevate my mood, elevates endorphins. Mental is just as important as physical with all we endure. Whatever works with me I use.
That is how I am able to use my mind to perceive my numbers and how I track them and how I try to find a way to get motivated which for me is not that easy. MyFitnessPal has a free account, but it doesn't show the potassium and that's what I need to watch. I am slow to get back to dieting and exercising and that's what I am using to get me up off my butt ha ha. These tools are for a lifetime at my leisure. It's also a great sense of control when you don't have any. I hope what I said can help in any way shape or form. Again have a good feeling moment or day!
Is there any way you can break up that monster paragraph into much smaller paragraphs? It's just too difficult to read for me as is. Thank you.
Hi. I read your much easier to read post. Wow. What a journey. Thank you for this priceless bit of information: "I could get on a transplant wait list at 20% when my doctors told me I had to wait until I was at 15%."
I am surprised at this: "I am limited to 2000 mg of sodium" as I understood the new guideline was 1,500 mg of sodium per day. I am also surprised that a renal dietician approved 4 oz of meat per day. I went all plant based with occasional small amounts of cheese and butter.
Great job on the 5 20 oz of water per day. I am really bad at drinking plenty of water unless it's just before my labs. I will work on that.
You did an incredible job on keeping logs of your diet and numbers and it paid off for you. And, yes, diet is supremely important.
Hi, thank you for your very kind, supportive words. I really appreciate you reading both my original mess of a reply and I really appreciate your informing me on its being difficult to read. That really assisted me as I didn't reread it originally. I was more than happy to edit it into the real post it is now.
As you are surprised about my limited to 2000 mg of sodium, I am surprised the guidelines said 1500 mg! My transplant dietician informed me of my limits. I am curious I will look into those guidelines.
This year I heard about the plant based diet for a first time and heard of it quite often. I had followed the Heart Association's Heart Healthy diet and most has the same ingredients. I have to be careful with the spinach because my calcium got too high in my blood test and in my diet I used too much bran and whole grain, which rose my potassium level, so I balanced that out and my next blood labs were okay. 2 years ago, I ate spinach and kale every day for 6 months and lost 30lbs even without exercising. Kale I had never eaten before and its delicious. The Plant Based diet is very smart as its great for your health and energy.
Water drinking depends one whether you are on dialysis because at that point I was limited to 1 bottle of 16 oz of water per day. After the transplant in the hospital and home I had to relearn how to drink water up to 4 bottles a day. It was so hard. That is when I started to track it simply with a mark, like those 4 marks with using the 5th one to cross over all 4 diagonally. Ha ha Pat Benetar's lyrics to Hit Me with Your Best Shot just came to mind, "...put another notch in my lipstick case." I am home all the time though which makes it easier to track.
I keep the chart I came home with from Transplant and make copies from the copier. I put it on a table in front of me so every I get up to refill the glass, with the penci I just mark it as I pass by. Then, I will notice later if I forget how much I drank. Sometimes I average only 2 20 oz glasses, but by seeing the paper and checking it, if didn't drink enough I just down the amount of glasses before I go to bed. The color the transplant center used for this chart is purple, which is great as it stands out as I walk passed it. When I ran out of their copies I just used the color on my copier and kept the same process going. When I notice I didn't drink enough water I will also eat salty foods as Planters Dry Roasted peanuts, because it makes me thirsty.
I really appreciate your replies and input. You acknowledgements and encouraging words really made a difference. Thank you!
Hi, Dllfb. Like SkiingSailor, I bought Lee Hull's "Stopping Kidney Disease" book and pretty much followed his plant based guidelines with some very minor cheating. My eGFR went from 42 (stage 3B) to 58 (stage 3A) in about three months -- Stage 2 CKD is 60 and above eGFR.
I highly recommend the book because it teaches you everything about CKD, it's all backed up by the included medical research articles which you can skim, and offers a plant based CKD diet. It's $19.99 or less on Amazon.
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