Hello all - first post here. I recently spent 3 weeks in the hospital due to surprise kidney failure. My creatinine level was at 18. I was given about 8 dialysis treatments - had a reaction to heparin, so they could not do a kidney biopsy because my platelets were low. In the meantime, my creatinine levels started to improve, as did urine output. The diagnosis was interstitial nephritis “without proof.” Most likely caused by an allergic reaction to medication(s).
I have been home for two weeks, and my creatinine level is now 1.29. My nephrologist says I am about 50% kidney function and it will hopefully keep getting better, but we can manage it at this level.
My main question is what resources can I rely on? I see renal diets with different recommendations for things like protein consumption. I want to give my kidneys the best chance for recovery.
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Shazz53
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Find a Renal dietician who can work up a diet that is specific for you. Each person is different so there is no one size fits all.
Personally, I do not like a lot of recipes that come from places that do dialysis like DaVita and Fresenius. I see the salt and protein levels are too high, especially for me who is at stage 4. Sometimes the recipe is for someone on dialysis and their needs are completely different than mine.
It can be a bit frustrated at first, but once you know your levels, using a tracker like MYFITNESSPAL works to keep you within range. Come back with any questions you have.
I was diagnosed with GFR17 in the first instance. Feb 2019 and sent home. No treatment.
After 2 weeks Metformin removed and then I had a kidney scan. Kidneys normal size. Saw nephrologist and he examined me, he advised to drink more. Given Ferrutin infusion as levels were very low.
Thanks for the replies. So far I have just been told to avoid salt. I have a follow up this week with the nephrologist and will push for more dietary info, and an appointment with the dietician. Even if my kidney function continues to improve, I want to know how to keep them healthy.
I am also diabetic, although it was well controlled before with diet and a low dose of metformin. They took me off of metformin. Am now on glipizide and insulin.
ask for a 24 hour urine sample test . My nephrologist considered this to be the main indicator of kidney health. Kidney dieting is not easy , because it is not only the kind of food you eat , but quantities especially protein from animal or fish sources which are important. A diet plan, with regular meals , is the key with plenty of water. For the challenge was not to go hungry - oats helped a lot here
I encourage you to get your diet structured and keep on keeping on. I discovered in 1980 that I had focal segmental glomerial sclerosis and a GFR of 50. I began a vegetarian diet (not vegan) when it was not that popular. I was told that I would require dialysis in 5 to 10 years. I did better than anyone would have believed. I began peritoneal dialysis in 2000 after 20 years. I’ve seen my 2 children grow up, married, and give me 7 grandchildren. I finally received a transplant in 2003 and have had excellent results. Get on the transplant list for your area when it is allowed and look into listing in other areas. I don’t know what the rules are now. UNOS (United Network of Organ Sharing) has an excellent website. Knowledge is to your advantage in all things. I know people who were on dialysis for 20 years before getting a transplant. You have choices as to what kind of dialysis you choose. Maybe more than I had in 2000 when I chose peritoneal, a routine that allowed me to travel, to be flexible and to do my dialysis while asleep, which was easy!!
Thank you for sharing your history. I am not currently on dialysis - just received several treatments in the hospital, but dialysis catheter has been removed. I will follow up with the advice to meet with a dietician who specializes In renal disease. I believe it is too soon to be thinking about a transplant.
Nice you hopped on this site to ask for information. I'd simply like to add that you apparently have diabetes. This is a game changer for many of us. Diabetic kidney disease (DKD) is responsible for the vast majority of kidney disease and dialysis as it weakens and takes out organs one by one. It slowly destroys tiny blood vessels in the kidneys, eyes, legs, etc. Generally, the damage becomes obvious in 20 years or so even when medically controlled. It's great that you've switched to taking insulin as that's the best way to stabilize those abrasive sugars. If you can get off all medical interventions, that would be the best therapy of all. That will stop the destructive process in its tracks. I highly encourage you to see a "registered" dietitian who can examine your blood and work with you to design a plan that incorporates both diabetes and kidney features. Some kidney diet items are terrible for diabetics - e.g. rice, sweet fruits, etc. Our dialysis nurse has noticed that many renal dietitians are indeed not addressing dietary needs for diabetics and their education needs to be improved, stating that "almost all" the patients at the center are diabetics. So look for one that handles both.
Unfortunately, diabetes has become so commonplace in modern society that many dismiss it. Yet, I speak as a caregiver to husband who began treatment for Diabetes Type II in his 40s. He went on dialysis at age 70. It runs in his family and prompted blindness, leg issues, kidney failure, urinary issues, heart attacks, etc. among his ancestors. Many dying early. His mother contracted it too, but she took instant action, ate properly, regained her trim figure, went off all meds, and lived well into her 80s. My husband after ignoring his condition for years, finally went off all diabetes meds too at age 71. (Our personal care physician took matters in hand and drove the point home; we wished others had been as direct and candid.) Bottom line, it can be done. I've included a link below which explains the role of diabetes in kidneys and elsewhere. Blessings on your journey.
Thank you for the information. I will follow up with a dietician who can help me manage/balance the needs of diet for both diabetes and kidney disease. I had noticed so many contradictions when looking at diets for renal disease, compared to what I know about controlling diabetes with diet.
Great information! I can't find a registered dietitian who can accurately addresses renal disease AND diabetes. I think they all assume that everyone wants to take medication for diabetes, when Metformin in fact lowers eGFR! I need to be low carb, low protein and low fat - and I have no idea what I can eat, so I'm not eating anything. If you can refer a dietitian for a televisit, I'd be grateful! I'm also very open to ideas on what I can eat besides cauliflower and cabbage! LOL
Hi GoodHealthIsAJourney. Unfortunately, like you, we were unable to find a great dietitian. They tend to focus almost exclusively on one area or another. In my husband's situation as a diabetic with serious kidney disease, his primary care physician stepped in and became his dietitian. Instead of giving him a diet plan, he limited my husband to a very low number of carbs - only 50 a day - to reduce weight and eliminate his diabetes medication. His nephrologist wholeheartedly endorsed the plan and we became avid label readers - modifying our own recipes to reduce carbs and then reducing salt intake, etc. His numbers improved significantly at that time. Both doctors were impressed. To this day, even though my husband is no longer on any diabetes meds, our primary focus is on the diabetes and our secondary focus is on kidney health. Please be aware that this worked well for my husband, but your needs may be different. If you can't find a knowledgeable dietitian, I highly recommend checking in with your physicians. Some have a big interest in nutrition and disease. Good luck!
Fantastic! Diabetes is the root cause for many serious health conditions. It's also a huge money maker for healthcare specialists and companies. Knowledge is indeed power. Cheers on successful outcomes!
Kidney failure in 1996 at 29 years old, I am now 54 creatinine runs 2. 9 to 4.2 eGFR from 15-24 and those have all been consistent for 25 years. Know what kills your kidneys like NSAIDS, alcohol and many other items. Let all doctors know and make sure it is on a medic-alert bracelet or a health app in cases of emergency so an unsuspecting ER doc doesn’t give you Duladid IV push after a car wreck. Work out often, eat right and maintain a healthy weight. It can be done. However, if you have diabetes than that s a game changer. Always been my biggest fear. However, so far blood sugar stays in the 80s and A1c is 5.2. Maybe that’ll stay consistent as well. Lord knows I got plenty wrong health wise...lol!
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