@gingerw Glad you posted this. I purchased some herbal teas, several have licorice root in them. I wonder how much of the glycyrrhizin ends up in a cup of tea? Guess I can always donate the tea to our church fellowship group. I did have some of the tea to sooth the throat and coughing during a recent cold/flu. It would be wonderful if companies were made aware of the issues they cause for people with high BP. Or, the licorice root for CKD. I think of the amount of sodium being dumped on food when dining out. Many of those foods have 2000-5000 mg of sodium in them, extremely high levels. Seems like a letter writing campaign needs to happen with restaurant companies, food producers and to the NIH and others.
@gwladj76 NIH is aware. I find the only way to control sodium is to cook for myself with known ingredients. Absolutely nothing prepackaged. Admittedly I am fairly used to “scratch” cooking. I stopped adding salt. I eat out very rarely which may not be an option for you.
@m1rmiller
Do you mind sharing your kidney disease? I have a first cousin who stayed at stage 5 for 10 years and still going. She took NSAIDS daily for many years and that destroyed her kidneys. I was on lithium for many years and am at late stage 4. I hope to maintain without going on dialysis until a possible transplant.
@mrainne I'll try to help. The problem is that I can contribute all that much. In my younger ears I thought that I could heal myself by doing lots of exercise and meditating every mornig. So, I never got a primary care doctor let alone actually went to see one for 25 years. It came as a complete shock to me when I suddenly felt like I was drowning when I lay down to sleep at night. I went to a local walk in clinic and they did and EKG and told me I should go to an emergency room. When I got there they met me at the front door admited me immediately. My blood pressure was 250/120.. I was 66 years old. The hospital on call nephrologist saw that and never bothered to do a biopsy just diagnosed me with hypertensive kidney disease. So, I switched to a different nephrologist after about 6 months with that one but by that time I had developed 2 or 3 cysts in each kidney and my new nephrologist said we migh end up with nothing but cyst fluid. I'm really not absollutely sure which type of kidney disease it was, but my solution was to hire a renal dietician to help me fight going on dialysis. That was helpful to get me started and after a few months I felt ready to take over doing my own diet. Rather than avoiding them, I tried to have blood tests done as frequently as I could to help me adjust my diet choices. The saying is EatTo Your Labs. Like so many others, I had to be careful with my potassiu, sodium and protein. I don't enjoy drinking and my weight is not an issue so that didn't require any changes. I enjoy challenging myself with things that are hard for me to do so excercise is always part of my life. When I hit 70 years old I went to the opening of a fencing club started by the son of a friend. After watching a demonstration I thought that it looked like an interesting challenge both phsically and mentally 9lots of very complex strategy in fencing) so I took up com-etitive sabre fencing at 70 years old. Lots of excercise, watch our labs and let them tell you how to adjust your diet, and don't give up without putting up a heck of a fight. I am almost 3 years post transplant and my eGFR last month was 90. Everyone is different, but I don't consider myself anything special so I fell like you can even better than me. Go for it!
@mrainne I'll try to help. The problem is that I can contribute all that much. In my younger ears I thought that I could heal myself by doing lots of exercise and meditating every mornig. So, I never got a primary care doctor let alone actually went to see one for 25 years. It came as a complete shock to me when I suddenly felt like I was drowning when I lay down to sleep at night. I went to a local walk in clinic and they did and EKG and told me I should go to an emergency room. When I got there they met me at the front door admited me immediately. My blood pressure was 250/120.. I was 66 years old. The hospital on call nephrologist saw that and never bothered to do a biopsy just diagnosed me with hypertensive kidney disease. So, I switched to a different nephrologist after about 6 months with that one but by that time I had developed 2 or 3 cysts in each kidney and my new nephrologist said we migh end up with nothing but cyst fluid. I'm really not absollutely sure which type of kidney disease it was, but my solution was to hire a renal dietician to help me fight going on dialysis. That was helpful to get me started and after a few months I felt ready to take over doing my own diet. Rather than avoiding them, I tried to have blood tests done as frequently as I could to help me adjust my diet choices. The saying is EatTo Your Labs. Like so many others, I had to be careful with my potassiu, sodium and protein. I don't enjoy drinking and my weight is not an issue so that didn't require any changes. I enjoy challenging myself with things that are hard for me to do so excercise is always part of my life. When I hit 70 years old I went to the opening of a fencing club started by the son of a friend. After watching a demonstration I thought that it looked like an interesting challenge both phsically and mentally 9lots of very complex strategy in fencing) so I took up com-etitive sabre fencing at 70 years old. Lots of excercise, watch our labs and let them tell you how to adjust your diet, and don't give up without putting up a heck of a fight. I am almost 3 years post transplant and my eGFR last month was 90. Everyone is different, but I don't consider myself anything special so I fell like you can even better than me. Go for it!
@gwladj76 NIH is aware. I find the only way to control sodium is to cook for myself with known ingredients. Absolutely nothing prepackaged. Admittedly I am fairly used to “scratch” cooking. I stopped adding salt. I eat out very rarely which may not be an option for you.
@ailsas It's those family get-togethers to celebrate an anniversary, birthday, whatever. Many are too busy to cook a home meal, or too feeble to do so. I make a lot of my own meals from scratch, adhering to CKD guidance. My wife doesn't contribute much around the house, preferring to watch TV all day - literally. So, I'm on my journey, mostly fighting alone, trying to keep our home functioning. I have several interests (hobbies), cooking is one of them. With so much to do (maintenance- daily chores), sometimes it is overwhelming and exhausting. It's good NIH is aware, but I'm surprised they have not issued guidance to the food industry. Maybe, that day is coming.
@susangail53 I did the same thing when I went down to Mayo Clinic now I'm not sure what kind of chronic kidney disease you have mine is called renal tubular acidosis it's very rare so I form kidney stones very fast. The more citrus the better because citrus helps to dissolve kidney stones so for me I also drink a quarter cup of lemon juice everyday.
I found what I have to stay away from is like pop I don't drink any pop anymore not even a can of wheat I don't drink any Gatorade I'd stick to water and sometimes I'll drink a vitamin Water and by cutting that out for me has really gotten my number of hospitalizations significantly down I went from like every 2 months to once a year now that I have to go in and have surgery. Aside from that I cut back on my salt because I used to love salt put my sodium levels have normalized my potassium has normalized my my all of my your basic kidney labs they've all normalized just in cutting out pop adding extra citrus and cutting back on my sodium.
They never told me that I had to go vegetarian It is important to watch your protein intake so like I'm supposed to be on a low protein diet but whenever I'm in the hospital they don't have me on a low protein diet the only thing that I've really changed is my sugar intake and my sodium intake because Gatorade is one of the worst things they told me for my kidneys because of the sugar and sodium content in it.
@maryland9 I was told by the dietitian that banana is absolutely are good they don't contain as much potassium as people think they do but it's not something that I was told would harm my kidneys when I met with the dietitian at Mayo.
@kenzie Welcome to the club! I was in End Stage 5 from the first week that I was diagnosed and lasted for 10 years without ever going on dialysis before I finally had to opt for a transplant 2 years ago. One thing that I found helpful was learning portion control. Don't make life any more miserable than it is already. You like bananas, mangos and peaches? Then allow yourself a tiny bit without going overboard. There is nothing poisonous about those fruits, they just are very loaded with stuff that your kidneys have trouble handling. Instead of eating that banana, just eat half of it, or maybe only a couple of slices on your oatmeal. I try to eat very slowly and mindfully so that I am really savoring and enjoying that banan slice. Work with your doctor and consult with a renal dietician about what would be appropriat for you. Stage 3B is still a long way from stage 5. You may be able to find a way to still enjoy eating the fruits that you like.
I just met with a renal dietician. Very thorough and talked to me over an hour. It was recommended to go vegetarian, which is a bit difficult for me. I don't eat red meat; however love chicken and fish. So far my potassium, phosphorus, sodium, and protein levels are all in the normal range. I just want to keep things in the normal range! I highly recommend a renal nutritionist. She opened my eyes to a lot. Also, the app Chronometer is excellent. You log your food each day and everything is broken down as to the percentage you are eating for all the vitamins and minerals! This has really helped!
@susangail53 thank you for that info. I never heard of a Renal Dietician. I will find one of those. My diet is mostly fruits and veggies as was recommended by my Cardiologist. I sometimes eat chicken and fish. I'm worried about my sodium level as it's been going up and down for 5 yrs and every med the Nephrologist gives me reduces it even further. At the moment I'm on Urea tabs that make me tired and dizzy and my sodium is at 127
I'm at a point I dont know what to do
Any suggestions would be appreciated.
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@gwladj76 NIH is aware. I find the only way to control sodium is to cook for myself with known ingredients. Absolutely nothing prepackaged. Admittedly I am fairly used to “scratch” cooking. I stopped adding salt. I eat out very rarely which may not be an option for you.
@mrainne I'll try to help. The problem is that I can contribute all that much. In my younger ears I thought that I could heal myself by doing lots of exercise and meditating every mornig. So, I never got a primary care doctor let alone actually went to see one for 25 years. It came as a complete shock to me when I suddenly felt like I was drowning when I lay down to sleep at night. I went to a local walk in clinic and they did and EKG and told me I should go to an emergency room. When I got there they met me at the front door admited me immediately. My blood pressure was 250/120.. I was 66 years old. The hospital on call nephrologist saw that and never bothered to do a biopsy just diagnosed me with hypertensive kidney disease. So, I switched to a different nephrologist after about 6 months with that one but by that time I had developed 2 or 3 cysts in each kidney and my new nephrologist said we migh end up with nothing but cyst fluid. I'm really not absollutely sure which type of kidney disease it was, but my solution was to hire a renal dietician to help me fight going on dialysis. That was helpful to get me started and after a few months I felt ready to take over doing my own diet. Rather than avoiding them, I tried to have blood tests done as frequently as I could to help me adjust my diet choices. The saying is EatTo Your Labs. Like so many others, I had to be careful with my potassiu, sodium and protein. I don't enjoy drinking and my weight is not an issue so that didn't require any changes. I enjoy challenging myself with things that are hard for me to do so excercise is always part of my life. When I hit 70 years old I went to the opening of a fencing club started by the son of a friend. After watching a demonstration I thought that it looked like an interesting challenge both phsically and mentally 9lots of very complex strategy in fencing) so I took up com-etitive sabre fencing at 70 years old. Lots of excercise, watch our labs and let them tell you how to adjust your diet, and don't give up without putting up a heck of a fight. I am almost 3 years post transplant and my eGFR last month was 90. Everyone is different, but I don't consider myself anything special so I fell like you can even better than me. Go for it!
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7 Reactions@m1rmiller sorry for all my typos- too late at night for me I guess
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2 Reactions@ailsas It's those family get-togethers to celebrate an anniversary, birthday, whatever. Many are too busy to cook a home meal, or too feeble to do so. I make a lot of my own meals from scratch, adhering to CKD guidance. My wife doesn't contribute much around the house, preferring to watch TV all day - literally. So, I'm on my journey, mostly fighting alone, trying to keep our home functioning. I have several interests (hobbies), cooking is one of them. With so much to do (maintenance- daily chores), sometimes it is overwhelming and exhausting. It's good NIH is aware, but I'm surprised they have not issued guidance to the food industry. Maybe, that day is coming.
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2 Reactions@susangail53 I did the same thing when I went down to Mayo Clinic now I'm not sure what kind of chronic kidney disease you have mine is called renal tubular acidosis it's very rare so I form kidney stones very fast. The more citrus the better because citrus helps to dissolve kidney stones so for me I also drink a quarter cup of lemon juice everyday.
I found what I have to stay away from is like pop I don't drink any pop anymore not even a can of wheat I don't drink any Gatorade I'd stick to water and sometimes I'll drink a vitamin Water and by cutting that out for me has really gotten my number of hospitalizations significantly down I went from like every 2 months to once a year now that I have to go in and have surgery. Aside from that I cut back on my salt because I used to love salt put my sodium levels have normalized my potassium has normalized my my all of my your basic kidney labs they've all normalized just in cutting out pop adding extra citrus and cutting back on my sodium.
They never told me that I had to go vegetarian It is important to watch your protein intake so like I'm supposed to be on a low protein diet but whenever I'm in the hospital they don't have me on a low protein diet the only thing that I've really changed is my sugar intake and my sodium intake because Gatorade is one of the worst things they told me for my kidneys because of the sugar and sodium content in it.
I hope that helps.
@maryland9 I was told by the dietitian that banana is absolutely are good they don't contain as much potassium as people think they do but it's not something that I was told would harm my kidneys when I met with the dietitian at Mayo.
Thank you do much for your comments which were informative and very encouraging. Wishing you well.
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1 ReactionYou're welcome. Keep us posted on how it's going. Courage!
@susangail53 thank you for that info. I never heard of a Renal Dietician. I will find one of those. My diet is mostly fruits and veggies as was recommended by my Cardiologist. I sometimes eat chicken and fish. I'm worried about my sodium level as it's been going up and down for 5 yrs and every med the Nephrologist gives me reduces it even further. At the moment I'm on Urea tabs that make me tired and dizzy and my sodium is at 127
I'm at a point I dont know what to do
Any suggestions would be appreciated.