I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Athena on February 10, 2015, 06:00:41 AM
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I don't know if anyone else can relate to this but predialysis dietary advice is so confusing & mixed. Except for keeping to a low sodium diet, I've never been told by my nephrologist to follow a low-protein diet. If anything, I was told to eat lots of protein in the interests of protecting my Hb and iron stores. Although my PTH levels are above normal & I now take calcitriol for it, my calcium & phosphate levels are within normal range, as is potassium.
I am however finally going to see a renal dietitian soon! As well as a renal social worker for general support & counselling but I tend to be guided by what my Nephrologists really say. If they offer me little by way of dietary advice, then confusion is the name of the game!
I eat animal protein a few nights each week, lots of green salads, vegetables, tomatoes, berries, greek yogurt, dark chocolate, wholegrain bread, and about 4 eggs per day. I am in Stage 3b (egfr in the 30s). When I was in hospital recently for an electrolyte imbalance issues, I was in the renal ward & I was given meat for lunch & dinner! Lots of carbs as well.
If anyone has any advice that could share, I'd appreciate hearing from them.
I'm also someone who's a tad underweight & am trying to gain weight.
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Hello Athena,
The reason why all these dietary advices don't even agree with each other
is, that they have been "on the scene" for such a short time... and sometimes there is money to be made...
... When I started to become a strict vegetarian after my kidneys first failed in 1971, my decision came about,
because a Professor of medicine advised me that he would go vegetarian
if he were in my position when I tried to recover from complete kidney failure in 1971,
... The professor thought, there could be a way to keep the kidneys functioning for a longer time, if a strict vegetarian diet would be kept,
instead of doing nothing and waiting for dialysis straight away ... (don't forget the time was 1971)
... and I thought, what would be good enough for this professor as a medical professional, is most certainly good enough for me
and so I became a vegetarian on the spot in 1971 and it was the right thing for me to do,
because my kidneys continued to function without needing any dialysis from 1971 until December 2014...
... Perhaps the best thing for anyone in this matter, is to go with what their own body needs, rely on their instinct and try to do their best...
... the reason why many doctors/nephrologists think a vegetairan diet may be the "right ticket" in this situation, is,
that a vegetarian diet is very gentle to the body and does not "unnecessarily excite" or aggravate the body
and/or the digestive system and because of that the kidneys may be "pampered gently" to function longer...
Best wishes from Kristina.
P.S. When I say "vegetarian" I mean everything except for example garlic, because garlic is very heavy to digest
and because of that it becomes a "heavy burden" on a fragile body during this process...
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Kristina,
Thank you so much for your insightful comment. If anyone told me what you were told in the past, I would undoubtedly have done the same by now! Just by way of comparison, I've been told by my Neph that the ACE Inhibitor is what has largely eliminated the need to follow low-protein diets, as was required in the past before ACEs were introduced. I was also told by a dietician my Neph referred me to that I should eat 2 grams of protein per kilo of body weight. That is just what I've been advised ...
Can you please tell me what your diet has consisted of in more detail? I would really love to know.
Because you have followed a vegetarian diet for 43 years, did you ever run into problems with low iron stores/low Hb issues at any stage on this journey?
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I was never told anythiing by anyone (except by the professor I have mentioned before),
but all doctors agreed ever since, that I should continue doing what I am doing because it seemed to be working fine for me...
... as my blood tests always confirmed and testified ....
... as to running into troubles, I only started having troubles with low iron etc at the last stages before starting dialysis last December 2014...
... and to my knowledge all the years before I had never any issues with it... and my blood tests were always "perfect" through all the years before...
and I was always advised to continue eating what I was eating...
... I shall write more about my diet in the Diet-section as soon as I can find more time,
because at the moment I am just preparing to go for "you know what"...
... and in the next few days I shall be very busy as well, but as promised, I shall write more details about my diet
in the Diet-Section as soon as I can find more time to do so...
... One thing I should mention here is, that I have eaten a portion of 3-4 Asparagus peeled and cooked for 18 minutes every day for many years...
because Asparagus is a very mild and very natural diuretic... but not more than 3-4 Asparagus per day because of the potassium...
Good luck an best wishes from Kristina.
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2 grams of proteing per kilo of bodyweight??? Holy what??? For a pre-dialysis diet? Athena, where do you live? I also was put on an ACE inhibitor due to spilling protein in my pre-D days, (benazapril 10mg, was on it for years) and while yes, it reduced the protein spillage significantly, my neph recommended a LOW protein diet of approx 0.6gm of protein per kilo of bodyweight. Protein is hard on the kidneys to filter, hence the need for a low protein diet when one has low kidney function or is trying to preserve kidney function.
KarenInWA
But, low protein is better than TOO low or NO protein. That also can whack kidneys out. Never researched that bit of info, though.
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All I can add is that the whole issue of protein intake pre dialysis is very much NOT a definitive thing. I have seen articles and studies on both sides of the issue. Honestly I cant myself really believe that a low protein diet will save any kidney or really slow down the process. I believe the type of protein MAY matter . Animal proteins are harder on the kidneys while non animal proteins are easier. I agree with Kristina on this. The ACE inhibitors or ARBs are more important then protein reduction. I agree with the nephrologist on this. Low protein diets can damage the rest of the body . All our tissue is protein based as are our immune factors and clotting factors etc. Lowering protein MAY help the kidneys a little but at the risk of damage to other organs like the heart and liver. So MODERATION in everything is often the best advice.
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Thank you Noahvale for your detailed post. I do think the recommendation of the dietician for a high protein intake in the past has become redundant - he was a bit removed from the mainstream dietary establishment from what I gather, but was highly regarded. He was not a renal dietician per se. A renal dietician at the time was telling me to limit protein intake but was not too restrictive about it because I was in early Stage 3A. My Neph was prepared to back the maverick dietician.
I've interpreted all this as signs that there seems to be debate about the merits of low protein diet in general for kidney patients where nephrologists are concerned. My Neph, I might add, is a highly esteemed Neph who has helped many patients in his long career. He is extremely sought after.
I don't really know anything, mind you. Who's to know what could be the real truth? I do seem to feel very good eating my eggs for breakfast. I feel like they're full of goodness and are supporting me.
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Hello again Athena,
There has been a long discussion about pre-dialysis, dialysis and protein and medical diet-opinions hardly agree with each other ever on this...
... Having been a vegetarian for over 43 years, I sometimes wondered about whether or not I am doing the "right thing"...
... And the only confirmation I could possibly get to assure myself that I am doing "the right thing",
is to study my regular blood tests and adding to that is how I feel...
and get as much information as possible to "fit" my vegetarian diet-ideas, where I "feel" particularly at home with...(instinct)
Since 13th December 2014 I have been on dialysis and yesterday I have received my second monthly blood-test results ...
... Afterwards I could ask the dietician to have a look at my blood-tests and she told me that I should continue to eat what I am eating,
because my blood-test-results came back perfectly alright and there is nothing I should change ...
I was very relieved by that, because everything I was reading about protein and diet in kidney failure is so conflicting
whilst at the same time for "us" in ESRF it is so important to keep the rest of our body as healthy as possible with the right nutrition...
It is a long learning process and might take time and the only guide-line we have is our regular blood-test-results...
Best wishes and good luck from Kristina.
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2 grams of proteing per kilo of bodyweight??? Holy what??? For a pre-dialysis diet? Athena, where do you live? I also was put on an ACE inhibitor due to spilling protein in my pre-D days, (benazapril 10mg, was on it for years) and while yes, it reduced the protein spillage significantly, my neph recommended a LOW protein diet of approx 0.6gm of protein per kilo of bodyweight. Protein is hard on the kidneys to filter, hence the need for a low protein diet when one has low kidney function or is trying to preserve kidney function.
KarenInWA
But, low protein is better than TOO low or NO protein. That also can whack kidneys out. Never researched that bit of info, though.
Karen,
Had I followed his advice I would have had to consume about 100g of protein a day. That would be about what a male body builder with no kidney issues would be trying to consume to keep up with his weight lifting! :rofl;
I am a female with heavy menstruation issues unfortunately so that is why they wanted me on more protein than usual. Animal protein is the most easily absorbed source of iron. However I am now on iron infusions & Aranesp injections - these things do work well, even if they're not the 'real thing'.
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I spoke to my Nephrologist today. He reiterated that he does not believe low protein diets do anything to preserve kidney function. He said I certainly shouldn't follow a high protein diet either but to keep it in moderation. Though my serum phosphorous level is always normal - I do have raised PTH levels that is above normal. For that problem I'm now taking Calcitriol. But he thinks there is room to limit phosphorous in the diet.
The only problem is - phosphorous is in every food! It's like breathing but trying to restrict oxygen intake!
So I guess this means no more dairy products like greek yogurt?
I didn't ask him about prescribing me those phosphate binders, but that is another question on my mind right now. Wouldn't it be better to not restrict diet & just take these pills?
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Athena, by the time you get to stage 4, reducing the consumption of animal protein really does help to preserve kidney function. I was on the pre-renal diet for stage 4/5 patients for 8 years. I was told to restrict my daily animal protein intake to no more than 3 oz which I found easy to do.
Start limiting phosphorus and keep tabs on your labs. If you want to keep consuming dairy products, pick your favorite and stick with just that one. If your favorite is greek yogurt, eliminate milk and cheese, for example. Since your phosphorus levels are OK for now, now is the time to experiment a bit and see which restrictions you can most easily live with.
Phosphorus binders are notorious for causing gastrointestinal problems which take the form of either diarrhea or constipation; take your pick. Hopefully your neph won't prescribe those until absolutely necessary because binders are a last resort option. Tweaking your diet is a much healthier option.
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Thank you Moosemum for your great advice. I will start looking at high phosphorous foods & start limiting them. It's sure hard though!
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Thank you Moosemum for your great advice. I will start looking at high phosphorous foods & start limiting them. It's sure hard though!
It's hard at first, that's true. It's not easy to remember which foods carry which kind of risk, and it's not easy to have to think about everything you eat. It's a real pain. But you know what? It becomes second nature. But more importantly, once you realize that you are eating in a way that protects your body, it becomes SO much easier.
I figure that you can look at it in two ways. One, you can mourn the fact that you can't eat anything you want, anymore. There IS a sense of loss. OR, you can see it all in terms of keeping your body healthy. Once I understood what high serum potassium and/or high serum phosphorus could do to me, the pre-renal diet became a piece of cake. I instantly lost all desire for "dangerous" foods. Just wasn't interested.
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Thank you Moosemum for your great advice. I will start looking at high phosphorous foods & start limiting them. It's sure hard though!
It's hard at first, that's true. It's not easy to remember which foods carry which kind of risk, and it's not easy to have to think about everything you eat. It's a real pain. But you know what? It becomes second nature. But more importantly, once you realize that you are eating in a way that protects your body, it becomes SO much easier.
I figure that you can look at it in two ways. One, you can mourn the fact that you can't eat anything you want, anymore. There IS a sense of loss. OR, you can see it all in terms of keeping your body healthy. Once I understood what high serum potassium and/or high serum phosphorus could do to me, the pre-renal diet became a piece of cake. I instantly lost all desire for "dangerous" foods. Just wasn't interested.
... Same here: ... As soon as I realized, how easily "dangerous food" could shorten the life of my kidneys and my own life,
I was not even interested anymore to look at it...
... another point for "us" to think about, is, that many businesses producing food are forced to make a profit...
... and often the quality of food suffers as a consequence...
... As soon as I realized the possibility of such a conflict, I gladly cooked my food from then on every day
and on each and every occassion without any bother... better save than sorry...
... At first it all seems very unfair and appears to be lots of work, but soon "one" gets into the routine of it and shopping for food,
choosing the quality of veggies and fruit, washing and preparing the veggies and cooking our daily meals becomes soon "second nature"...
... and it shows... not only in our blood results, but our organs and our body appear very content and gratefully as well ...
Good luck wishes from Kristina.
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I'll add my two cents here on the protein debate, not to stir up controversy but to illustrate that everyone's situation is different and the same advice does not work for all. Five years ago when I found out my kidneys were declining to the point where I might someday need dialysis, I cut way back on my protein intake, following the suggested limits for kidney patients. I did this for three years, during which time I gained over 40 pounds and my kidney function slowly declined. I was severely anemic and felt worse and worse as time went on. I researched the protein issue thoroughly and realized there was no real consensus among the experts. My nephrologist never advocated limiting protein, only using it in moderation. So I experimented with increasing the protein and strictly limiting carbs. I ate limited amounts of red meat and pork, though not eliminating them entirely. I ate eggs every morning, added liberal amounts of low-carb vegetables, and got most of the rest of my protein from fish and shrimp. Over the course of two years, I lost more than 40 pounds, enabling me to get on the transplant list, and my kidney function, which had been steadily dropping, began rising and had held in the 18-20 range for over a year, with only one coming back at 16 then going back up to 18. All my other labs have improved as well. I am healthier by far than when I followed a low protein diet. I know this goes against conventional wisdom, but I've had labs every month during this time, and for me the results have been clear. I don't advocate this for everyone. Kidney disease has many causes and for some a high protein intake probably is detrimental. For me, however, the added stress to my kidney caused by the excess weight was far more detrimental to my overall health than the protein intake. I just don't overdo it. But I have protein at every meal now, and it seems to work for me.
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Tigtink, thanks so much for your post and for reminding us that everyone is different.
I'm curious. How much protein did you end up eating per day? What was, for you, eating protein "in moderation"?
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MooseMom, I have 50 to 100 grams per day, spread over three meals. I have been on an ARB for several years which has been quite effective in controlling protein leakage. I'm prepared to lower my protein intake if the labs indicate a decline, but so far I've done very well with the higher protein.
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I researched the protein issue thoroughly and realized there was no real consensus among the experts. My nephrologist never advocated limiting protein, only using it in moderation.
Tigtink, thank you so much for sharing your experience. Honestly, I'm just like you and everyone else here - we are all trying to work out what to do & whose advice to follow!
My experience to date is that 2 nephrologists have not advocated going on a severely restricted protein diet - just eat protein in moderation is what I was told. I probably don't eat as much protein as you (4 eggs a day & a bit of meat at dinner time, occasionally as a sandwich filling, the rest made up in salads, fruit & veggies & some dairy products like Greek yogurt). I have a naturopath who has also advised me that vegetable protein like beans, legumes may be hard, or even harder, on the kidneys than animal protein. The naturopath does not believe that a low animal protein diet will suit me.
I am about to have an appointment with a renal dietician and I can just feel that the standard advice is going to be given about eating very low protein. My dilemma is that if my nephs don't advocate low protein, how on earth can I override what the nephs have told me & go with what a dietician says? :stressed;
As a diabetic, reducing carbs and therefore eating more fat & protein is a godsend in terms of blood glucose control. But I also am thin and need to gain weight - so that makes carbs much better for me. It's a real juggling act. And now the kidney problem has only compounded the confusion about how to eat.
To be quite honest, the only problem I really have where blood tests are concerned (apart from having CKD) is a slightly elevated PTH levels with normal calcium & phosphate levels, for which I've been prescribed calcitriol recently. My potassium level has always been normal. To me, the it's about reducing this blasted PTH level. The only other issue is a high propensity towards low haemoglobin levels/low iron stores - but I have heavy periods and take high doses of an ACE inhibitor - these two factors keep me on a fine line.
Once again, I am not discounting anybody's experience with a vegetarian/low protein diet. I will carefully listen to what the renal dietician & my nephs have to say as well as do a lot of research & make up my mind. I truly value everyone's contribution in this discussion! Thank you.
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The Internet is a great link to learn as much as possible about diet in end-stage-kidney-failure etc.
... and there are also medical discussions about the best diet in ESRF to be found etc.
I wish you good luck and all the best to find the best suitable ESRF-diet for yourself,
Kristina.
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I know my days of eating normally are being numbered as I wait for my appointment with my dietician. So that must be why I had a bad day of indulgence. I'll share what I ate today, if people can tolerate hearing a bit of horror.
Breakfast: 4 eggs, grilled tomato, cup of instant coffee with regular milk, one slice of rye toast with butter.
Lunch: Six inch Subway wheat roll with mozzarella cheese, lettuce, tomato, capsicum, carrot and mayonnaise. Followed by a 40g dark chocolate bar (71% cocoa) with a flat white coffee.
Dinner: Dark green leafy salad with mayonnaise, 75g croissant with sour cream followed by a punnet of fresh raspberries.
I am trying to gain weight and I am a type 1 diabetic on insulin. The chocolate was very bad, I know but I was feeling quite depressed today and I'm one of these people whose mood is lifted by chocolate.
I really have no idea how to eat. I really don't cook. If anyone has any suggestions of how to modify the above to improve it, I would appreciate it.
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Athena, I'm not sure if you want us to have a go at amending your menu as for a pre-renal patient, but if that's the case, here is what I would do (and I speak as someone who was on the pre-renal diet for 8 years).
Four eggs is a bit much, as you no doubt know, so I'd change breakfast to one egg on rye toast. A bit of butter is no problem. A slice of grilled tomato is fine, but make sure it's just a slice. I would often have a piece of rye toast with a slice of tomato and an egg on top. I was allowed a quarter cup of milk a day, so if you want to have a splash of milk with coffee, that should be OK. If you like cereal, a rice or corn based cereal was often my choice of breakfast, topped with berries. I still eat this way even after transplant.
Lunch: Again, if you will be having a pre-renal diet, replace the whole wheat roll with a white bread choice. You'll probably have to lose the cheese. Dark chocolate is good for you, but this is where portion control becomes crucial. A whole bar would be too much, but an ounce would be OK.
Dinner: Unfortunately, dark leafy greens are too high in potassium, but boring old iceberg is a better choice. Romaine is OK. Sour cream is dairy, so you'd have to rely on portion control. Fresh raspberries are a very good choice.
Once you've seen the dietician, come back and let us know what s/he said, and then maybe together we can come up with some menu ideas for you. I'm really eager to hear what advice you are given.
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Hello Athena,
I agree with what MooseMom has alaready mentioned...
4 eggs is what I would eat in a whole week and instead of a grilled tomato and I would rather go for a grilled slice of tomato now and then...
...with "instant" coffee I am a bit careful of what I am going to get...
...and because of this, I regularly buy from a coffee-roasting-shop fresh coffee beans,
which are mainly a very mild roasted Continental coffee-blend ...
... and I always grind the beans myself at home... I don't use regular cows-milk because of a possible growth-hormon-involvement ...
... and I don't use butter for the same reason...
I usually start my breakfast with a small bowl of "Crunchy Nut" (Kellogs) mixed with almond milk,
then I have a little dish filled up with half a peeled apple in small pieces mixed with half a peeled pear, also in few small pieces,
and on another dish I have half a slice of toasted bread with a little peanut-butter spread on it
and finally one cup of coffee with a little bit of sugar and a little bit of almond milk...
... I always listen at breakfast to an LP with music of my favourite Baroque composers,
because their compositions introduce me very smoothly into the new day...
Your Lunch: carrot and lettuce sound very good, but I would rather cook the carrot in a soup and use the lettuce for a tasty salad ...
Your dinner: dark green leafy salad would frighten me a bit because I would not like to challenge my digestion and I rather cook very dark green leaves
together with my "soaked-overnight" lentils for about for ~35 - 40 minutes to be on the safe side...
Please ask your dietician about what to eat and how to cook your food (there are also many options of how to cook what on the Internet,
but I would be careful there as well, because there are quite a few "try to be overly healthy" cooks
who cook many "hard" vegetables only for a few minutes
and I would not really entertain this because I do not wish to over-challenge my stomach ...
... When I tried to learn how to cook what, I looked it up on the Internet and I specialized to learn from "grandmother" recepies,
because these recepies have prooven over many generations to be kind and gentle to the stomach...
Best wishes from Kristina.
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Moosemum and Kristina, I just wanted to thank you so much for your detailed replies. There's a lot of detail to take in & I will keep coming back to read your replies & work my way through them as I prepare for the meeting with the renal dietician. A big thank you to you both!
Just some immediate general comments. My serum potassium levels have always been normal & even when recently sick, they were still normal (in the mid range of normal healthy levels). So I'm thankfully not needing to worry about limiting my dietary potassium intake right now.
Where I have a problem is my elevated PTH levels - which indicates my kidneys cannot handle all the phosphorous I'm eating. My serum phosphate & calcium levels are still within normal range - but the raised PTH levels shows that my poor kidneys are struggling to keep the balance & I am taking calcitriol now. So what this means is that I need to look at limiting high phosphorous foods.
I can easily substitute the whole grain bread for white. That can be done, although a lot of white heavily processed breads tastes awful to me. Sourdough bread tastes quite nice, is that one okay for us?
My Nephs haven't forbidden me to eat my eggs as they are a good source of protein. My 4 eggs a day are fried in olive oil and they just go down quite easily I find. Perhaps the renal dietician will disagree strongly about my eggs, I will see. I probably can easily give up eating cooked meat but I would need to keep my egg habit for the protein that I still need. I just love them!
One other thing that I've noticed recently is that I am feeling very hungry and craving food! I am pleasantly surprised by this because when I was sick recently, I had lost a lot of my appetite. Now it seems I am very much recovering & my body wants a lot of food.
So there is another horror story today I'm afraid. At my favourite cafe in town, I had a raspberry muffin with a cappuccino. That was after I had a small vegetarian pasta dish. Honestly, I could have eaten more after I finished all of this! I don't know what's wrong with me but it sure doesn't feel like a bad sign. I'd be more worried if I didn't have an appetite. I'm praying that I will now gain some weight soon.
The battle continues ...
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Athena, this is why it is good that you are seeing a renal dietician! We can give you all sorts of "this is what I did" stories, but frankly they're irrelevant. I assume that your dietician will have your labs at hand and will use them to tailor a diet that fits your needs.
Too many dieticians settle for only telling you what not to eat. So, make sure that yours gives you ideas for substitutions. Keep asking, "If I am supposed to avoid that, what can I eat instead?" So, if you should avoid whole wheat bread, what will work instead? And one answer would be sourdough!
People with CKD also have problems with high serum cholesterol and triglycerides. I always ate a healthy diet and enjoyed exercising, so imagine my surprise when, at my very first set of labs 11 years ago, my cholesterol was 550 and my triglycerides were 2200! My docs had NEVER seen numbers so high. High blood lipids and severe CKD go hand in hand. My doc told me, and I quote, "You could eat cardboard for the rest of your life, but you'd still have high cholesterol." Medication brought those numbers down very quickly and very efficiently and have been good ever since, but I still watch what I eat. That's why I have concern about you eating so many eggs. But if that's the nutritional advice you have been given, then by all means continue to eat those eggs. They ARE good for you and provide many micronutrients (I cook mine in olive oil, too!), so enjoy!
I'm very glad to hear that your appetite is improving. Food is fuel! Well done!
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Moosemum, thanks again. Yes, the dreaded high LDL cholesterol! I've always had high levels, even before the CKD diagnosis. More recently when I was sick I had for the first time a pretty high triglyceride reading (hopefully it was an isolated false result). The norm is for me to have high LDL, good HDL & good trigs. A doc said in the past that my high LDL is 'genetic' but you may be more correct when you link it to CKD. One thing to note though is that I never used to eat eggs until about 3-4 years ago however my LDL cholesterol has virtually remained the same. I don't think eating high cholesterol foods has any real impact on our lipid profile. I think, our liver function is what determines our serum cholesterol levels.
The pressure to start statins is something I've been resisting for quite a number of years now. The truth is that I'm really scared of taking statins because 1. the severe side effects that many people seem to have from them, & 2. I just don't want to have another drug in the system. If my trigs turn out to be high, then I will need to take fenofibrates to reduce them and the bad news is that fenofibrates raises our serum creatinine levels pretty dramatically :o
I'm pleased to hear that you are doing well on them MM.
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I understand your anger, rage coming from a feeling that your future has been taken away and that your joy in life has been snatched from you. I felt those exact same things. I spent thousands of dollars seeking emotional and psychological help. I spent a lot of time and energy constructing every coping mechanism I could find. I educated myself about my disease and dialysis, and while this was a good thing in theory, I discovered that the more I learned, the more frightened I became. More knowledge served to overwhelm me.
For me personally, the only thing that finally gave me peace was receiving a new kidney. I have done well, and I am coping just fine with the meds. I have no underlying health issues (like Hemodoc and his history of cancer), so tx has given me my life back. I am perfectly well aware of the possibility that this kidney may one day fail or that the meds may cause cancer or something else, but the spectre of dialysis has been taken away for the time being, so I am going to enjoy every day of peace that I have been granted. Transplantation has given me hope; I understand all too well the feeling of hopelessness that you've described.
Like you, I shuddered at the thought of having to rely on anyone; I'm as independent as the next person. I did not believe that dialysis would allow me to maintain my independence. I did not like the idea of having my disease impact anyone, so even though I planned to do NxStage and dialyze at home, I was never naïve enough to believe that this would not impact my husband in any measureable way. So, tx has allowed me to remain independent. There are people here on IHD who don't think twice about having an adventurous life while on dialysis. Their exploits have been documented on this forum. But I don't think I'm one of those people. But then again, maybe I could be. I didn't want to find out.
Moosemum, I really just want to thank you so much for your very thoughtful, insightful and wise words of advice in this thread. I've been reading and re-reading your posts and I am deeply grateful to you for sharing your experience.
It is true that the more one learns and discovers, the more gruesome it becomes. The complexity and the scope of complications of failing kidneys is very overwhelming. The fear is something you can just cut your teeth on! My mind often wanders to the idea that there might a "perfect" psychologist or even psychiatrist who might just be able to take this away. But I'm quickly realising that no one can do that. I've been to a few counsellors, 2 psychologists and various healing gurus and I realise that nobody can really help. People offering pithy advice actually makes it worse a lot of times. I just can't bear to listen anymore. Nothing anyone can say can make this disease go away. I've tried meditation/creative visualisation but the only thing that made me feel good was visualising regeneration and perfectly functioning kidneys again! And of course, after such wonderful flights of imagination, depression often follows. My GP tried to boost my morale by saying that he has a patient who 'feels just great' on just under 10% kidney function. It did nothing to cheer me up.
As for transplantation as opposed to D, that would be the preferred option I would imagine for anyone, especially for those who are alone with little family support ... My Neph wants to bring this subject up already but I can't bear to go there. Decisions will have to be made soon. If I keep avoiding the subject, I may be overlooked for a transplant, if or when I should decide that I really do want to prolong my life.
But the anger is just as real and as powerful as the fear. I feel so angry at my Nephs for being so ineffectual and powerless to save me or anyone else from kidney failure. It's not the same as when someone unexpectedly goes into renal failure without warning. My case is different in that I am a diabetic and the early warning signs of emerging kidney problems were just ignored. CKD is indeed a silent disease but the doctors should have been more vigilant and proactive in the past to make me see 'the light' about the real possibility of kidney problems & how I could have avoided progressing to a serious stage. Like any younger person, I just thought "it won't happen to me".
Moosemum, you sound like you've done everything humanely possible to stay on top. It sounds to me like you perhaps have the same KD as your mother?
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As for transplantation as opposed to D, that would be the preferred option I would imagine for anyone, especially for those who are alone with little family support ... My Neph wants to bring this subject up already but I can't bear to go there. Decisions will have to be made soon. If I keep avoiding the subject, I may be overlooked for a transplant, if or when I should decide that I really do want to prolong my life.
I don't think transplantation is the preferred option for everyone, and Hemodoc gave a pretty good list of reasons why in another thread (complications of immunosuppression, including cancer, among then). When an MD says "The transplant meds still scare the willies out of me" it's hard not to take notice.
If you mean you're tired of hearing your nephrologist tell you (or suggest in some way) that you should prefer a transplant, then I completely understand. The preferred option is the one you actually prefer.
I have read that many people on dialysis feel terrible about the thought of harming a living donor, and turn down offers, insisting that they are doing just fine. I don't know if there is as much ambivalence about receiving deceased donor organs, but I would say that it is not a procedure to be taken lightly, and involves all kinds of risks.
You're also probably right to wonder if your communication now could affect your prospects of getting a transplant later. Actually, I too get a little nervous expressing any reservations. My preference obviously would be for my daughter to get better, even if science cannot explain why (and this is coming from someone who really likes scientific explanations). Beyond that, I think a transplant is inevitable, but I am not into closing off any reasonable options prematurely.
You might get some good advice around here on how to communicate. It does seem that transplantation is unique among medical procedures in making personal judgments about the recipient.
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Athena, thank you for the kind words!
My mother had an aortic aneurysm, and the surgery to repair it ended up starving her kidneys of blood for just a little too long, and the organs died. The surgery that saved her life resulted in that life being spent on dialysis. I suspect that due to her age (78 at the time), her native kidneys were perhaps impaired in the first place, and this operation was the proverbial straw that broke the camel's back.
I have no idea why I have fsgs, but it does not seem to have a hereditary component.
Oh yes, the anger is very real and is very valid, and it can be just as useful as the fear if one knows how to channel it. If the anger makes it easier for you to follow the diet ("There is NO food in the WORLD that is worth the harm that it could cause!!!") and to take your meds ("I REFUSE to be one of those patients who REFUSE to take care of themselves!!!"), then the rage can work for you.
I do understand, though, that renal insufficiency caused by T1 is a whole 'nuther kettle of fish, and feeling like your symptoms were not caught earlier must be a very hard thing to live with. I can't imagine any competent neph who works with a diabetic would be blind to the possibility of ESRD.
I don't know how transplant policy works in Australia, but here in the US, you are eligible for evaluation once your egfr drops below 20. I don't know why, but I have the idea stuck in my head that in Australia, you have to be on dialysis before you can be considered for transplant. In other words, there is not a policy in place for pre-emptive transplant unless you have a living donor. Is that right? I may well be wrong (I hope I am; I could google it, but I'm short on time, so I'm sure someone will come along and correct me!), but if I'm correct, you have plenty of time to digest the idea of transplantation.
So, what is the next big decision you feel you are going to have to make?
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For the issues of preservatives in white bread, Kristina posted a recipe not long ago, and a friend shared a white bread recipe with me that is very easy. It might be very similar to what Kristina posted. I have to admit I didn't go back to look. My friend's recipe doesn't even require kneading. It does require a cast iron Dutch oven though. I tried it and it's very good. I thought it almost has a sourdough taste.
3 cups flour
1 3/4 tsp.salt
1/2 tsp. rapid rise yeast
1 1/2 cups water
Wisk flour, salt and yeast together in large bowl. Add water and mix until combined. Cover bowl with plastic wrap. Set aside for 12-18 hrs.
Heat oven to 450. Heat cast iron pot w/lid in oven for 30 min. Shape dough into ball on floured surface. Cover w/plastic wrap. Let set while pot reaches 450. Remove pot from oven and drop in the dough. Cover and return to oven for 30 min. After 30 min remove lid and bake another 15 min. Place on rack to cool.
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I saw my Nephrologist on Friday and the mystery has been solved about the renal diet. My labs do not show the need for any dietary modification as such, except for reducing salt naturally and not going overboard with protein. He told me that I eventually will be prescribed binders but not now.
I asked him whether there is any evidence of early dietary modification that may have a preventative effect on disease progression. His answer was no, however he still thinks it's a good idea to have a renal dietitian examine my diet more closely to make any improvement to it, if necessary.
I found this rather interesting. There does not appear to be any kind of kidney diet that has any preventative effect in averting kidney disease. I've never had my Nephs suggest this. To them, diet only enters the equation when kidney function deteriorates to a certain level.
I'd be interested to hear what others may think about this. Is there a possibility that medical professionals may not have that quite right?
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Hello Athena,
When my kidneys first failed in 1971, I searched frantically for a doctor who could help me to find a positive way forward,
whatever that way would be ... The only doctor who could help me was a Professor of Medicine
(his special field was cardiology)... and his "hobby" was Preventative Medicine.
I was sent to him because he was an outsider, an "individual eccentric" with ideas and opinions, just like myself...
... When I consulted with him, he told me that if he were in my position, he would instantly "go vegetarian".
I thought about it and came to the conclusion that if it would be good enough for this medical professional,
it certainly would be good enough for me as well and I went vegetarian from then on... That was in 1971 ...
... He was the only medic who ever told me anything about a vegetarian diet, possibly because I have always been very slim,
so no other doctor ever saw a necessity to tell me anything about my diet. Another point, why no medic "talked diet" with me ever since,
is perhaps the fact that my blood tests have always shown that I eat a very healthy diet ... with no need to change anything...
... In recent years I was also told by nephrologists to "continue eating what I am eating" because my blood tests always show such good results ...
Good luck wishes from Kristina. :grouphug;
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Thanks Kristina for your reply. Can I ask what exactly happened in 1971. You say that you had kidney failure, yet you only went on Dialysis just a few months ago. When you state 'kidney failure', do you actually mean that you were diagnosed with CKD or did you have a severe acute kidney injury that you recovered from at the time? What was your eGFR back then? Did you ever become iron-deficient as a result of your vegetarian diet?
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Kristina, I will always and forever be amazed by how well you did on a vegetarian diet while battling severe CKD! It seemed that all I had to do was LOOK at a tomato and my potassium would rise! :rofl;
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Thanks Kristina for your reply. Can I ask what exactly happened in 1971. You say that you had kidney failure, yet you only went on Dialysis just a few months ago. When you state 'kidney failure', do you actually mean that you were diagnosed with CKD or did you have a severe acute kidney injury that you recovered from at the time? What was your eGFR back then? Did you ever become iron-deficient as a result of your vegetarian diet?
Hello Athena,
In 1971 I was found in a coma with uraemia and the ambulance brought me to hospital.
Fortunately the emergency doctors in the hospital refused to put me straight on dialysis
and instead they wanted to observe and they put me instead on all sorts of tubes (to be artificially fed etc. with all sorts of whatever)
... these emergency-doctors also hoped that my body might pick up again without any dialysis, which it slowly did to a small extend.
But "the writing" of kidney failure "was on the wall" for me ever since. I also knew from then on
that my little kidney function (I don't remember the precise numbers) would certainly not "last me out"
and I knew that sooner or later I would be on dialysis and some of the doctors wanted to prepare me for dialysis already in 1971...
I ws horrified and tried just about everything to avoid dialysis for as long as possible ... no alcohol, only a vegetarian diet, no late nights etc...
(I am sure you get the picture...) ... One year later I was strong enough for a kidney-biopsy, which diagnosed me
with Chronic Proliferative Glomerulonephritis (one of the deadliest kidney diseases).
From 1971 onwards I tried to find a doctor who could help me to keep off dialysis for as long as possible
and that was when the Professor told me to "go vegetarian", which I did. This Professor sounded very logical when he told me,
that I should avoid under any circumstances to aggravate my kidneys in any way
and I should instead "mollycoddle" them and care for them and a vegetarian diet could help me to do just that.
I have been eating vegetarian food ever since and it seems to have done me good ...
Mind you, I don't really know whether it was my vegetarian diet which "did the trick"
or whether it was something else, or whether I was just lucky...
Good luck wishes from Kristina.
Hello MooseMom, to be quite honest, I don't really know why my body tolerates my vegetarian diet (touch wood...!!!)
Mind you, I always eat very small portions ...
All the best from Kristina.
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Kristina, WOW! I sincerely believe that you may very well be a medical miracle. Seriously! I looked up your kidney disease on wiki and discovered that it could be one in a group of such diseases, most of which were indeed serious with end-stage a certain prognosis within about 10 years or so. The very fact that you lasted more than 40 years on such a modest level of kidney functioning (less than 20% on average?) is a remarkable story. I could see the faces of both my Nephs looking incredulous if you presented to them as a patient! :rofl;
Neph 2 did say to me a few days ago that not all types of CKD progress to end-stage. Sadly, diabetic nephropathy is not one of those kidney diseases. Your story truly inspires me. I know we are all different genetically & no two people with even the same type of disease will fare identically ... But nevertheless, your story really does inspire me. It was Neph 2 who once said to me, "nothing is guaranteed in medicine".
Is there already a past thread about your unique experience? If so, I would like to find it.
One thing that I have already take to bed from your example is avoidance of late nights. I am a true night owl - not for partying reasons, just sitting up reading & writing. I've always thought it may not be a good habit. I seem to have altered my sleep patterns as a result.
As for vegetarianism, I'll have to digest that one a bit more. When I stop menstruating, it may be more achievable without any iron deficiency consequences. But until then, I do need my eggs and a little meat now & then. Low carb eating is an ideal way for diabetics.
As for alcohol, we are on the same page! I have always avoided it.
It mustn't have been easy all those decades though with greatly reduced kidney functioning. There would have been many trials and tribulations I'm sure. Have you ever thought of writing a book about your experience? I know you have a lot on your plate right now and such a task would no doubt be next to impossible but when things become more calmer, perhaps this is something that can be envisaged?
Take good care of yourself Kristina.
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Hi MooseMom…you seem to be one of the rare ones who really benefit from a cholesterol controlling drug…what do you take?
Statins have become so heavily pushed on everyone* as "the answer" when the liver itself produces 80% of our body's cholesterol…so for you it must be a whacky liver on overdrive. For most people, especially older,having a higher cholesterol 250-300 apparently is not so bad as it prevents ALzheimer's…more research is showing we produce it because we need it, evey cell in the body needs it….I am glad there WAS medication to help you!!
Athena, having to gain weight seems like a dicey problem with good choices, not too much this, or enough that…how are you doing?
I went to my VA dietitian and asked about a renal diet when my CKD was still 40-37 egfr and they told me i didnt need it…now I am on my own as she is still promoting high carbs and the USDA;healthy plate"…which is never worked for me for weight loss…period.
Have you been able to add protein shakes, i.e. whey/brown rice protein to your diet for added calories? do you limit sugar, or need to?
* I posted the SHARP report on this site; what they felt was a raging success getting thousands onto 2 low dose statin drugs, with ONLY 3-4% of ALL of them who were helped even a small amount. I asked a nephrologist about this and he said there were two other MAJOR studies pushing statins on dialysis and were not effective- his comments: :
Yes, the SHARP study showed very small benefit and questionable since it was a combined endpoint.
Two large trials of statins in dialysis patients also showed zero benefits.
http://www.sharpinfo.org
http://www.tuitnutrition.com/2015/04/statins-and-diabetes.html
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Muddygurl, I have always followed a healthy diet and have always enjoyed exercise, so imagine my surprise when, 12 years ago during a workup with a new physician, it was discovered that my cholesterol was 550 and my triglycerides were 1500. These numbers are so far above normal that I requested a medal. My doc said he'd never seen numbers that high in a non-diabetic. That was how we knew that my kidney function had seriously declined.
I expressed my disappointment with having high blood lipids despite doing "all the right things" to have a healthy body, and my physicial replied, and I quote, "Even if you'd eat nothing but cardboard, you'd still have high lipid levels," referring to my low kidney function.
I've looked at the links you provided, and I will say this: While it may be true that statins have become popular to the point of being overly or wrongly or optimistically prescribed, the fact remains that for certain patients, they are extremely beneficial and effective. I am one of those patients.
I do not have diabetes and have never had trouble with high glucose levels despite taking both statins and immunosuppressants. I was fortunate enough to avoid dialysis, having had a pre-emptive transplant, so I cannot really speak to the effect of statins on diabetics nor or dialysis patients.
I take pravastatin and fenofibrate. I took Zocor before my transplant but do not do so any longer.
I have a full hepatic panel done every year and have never had any strange results.
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Well I am finally seeing my renal dietician next week. Today I had a good discussion with her over the phone. I informed her of my lab results and there were some surprising things I learnt from her!
Firstly, my target of a daily sodium amount of 1,500mg may be a bit too strict. She said I could go up to 2,000 mg (my Neph on the other hand recommended a target of 1,000mg). So must raise this with my Nephs!
Secondly, my slightly raised PTH as being just over the normal max amount is nothing to be concerned about. They apparently only worry once someone is 4-6 times the normal level. She even said that it is actually preferable to have someone with CKD with high-normal or slightly elevated PTH instead of low levels. I've never heard this before (I hope I have a well qualified renal dietician who knows what she's talking about ???)
Thirdly, she confirmed what I seemed to have gleamed from my Nephs quite some time ago & that is, a low protein diet is no longer recommended to kidney patients (though that may vary for some). A moderate protein intake is now recommended in general.
Apart from eating in a way that supports one's specific lab results, there is no preventative diet as such that will save one from kidney decline. At least not from a evidence based scientific viewpoint at this point in time.
Of course, we will discuss all these details and more when we meet face to face, but I felt good about hearing all of this as it suggests that I may not be doing too bad at all in my dietary efforts
:flower;
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Fiinally sat down face to face with the renal dietician. Some good news and bad news. The good news is that she doesn't really need to see me! I'm too "early stage" for her to really worry about me (which is good news I guess). Other good news is that I don't need to worry about counting & restricting phosphorous as I am in the normal range, same also with potassium. I seem to be doing well on the sodium intake but she seems to think that 2,000 mg of sodium per day is a good target - I'm basically aiming for 1,500 mg.
Bad news is that my protein intake may be too high on the days when I eat 4 eggs (which I always do for breakfast) and also some meat for dinner. My protein intake should not exceed 50 gm per day. Which most days I'm not exceeeding, as I don't eat meat every day. My target is 1 grams of protein per kilo of body weight.
Nuts needs to be restricted due to high protein & phosphorous content. Can't go overboard with the dark chocolate either. Small amount of cheese I'm having is okay.
The worst news is that I should reduce my saturated fat content for the sake of my high LDL cholesterol. Problem is I don't want to take statins and I am a butter & mayonnaise loving person, I don't know what to do with this one.
So in summary, there is no scientifically valid way to eat to prevent kidney disease progression (although cutting down on protein & salt does have a kidney saving effect). A renal diet is only there for when someone has electrolyte imbalances that needs dietary intervention.
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I have had to take statin for about 10 years now, and they have been a godsend for me. I understand that they are overprescribed, but I have found them to be extremely effective. I was allergic to Crestor, but I was immediately switched to an older statin, and I've had no problems at all. My blood lipids went from being staggeringly high to being perfect in a very short period of time. Please do try to keep an open mind. :thumbup;
Most people on a Western diet eat to much animal protein and too much saturated fat. If you are being told to merely cut back on these things rather than avoid them entirely, then I'd say that all of this has been good news!!!
No, there is no way to eat to prevent kidney disease, rather, there is a way to eat to lessen the burden to the body with CKD.
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Hi Moosemum, nice to hear from you. Hope you're well :waving;
The issue I have with my cholesterol is that it's not staggeringly high for me. The normal upper limit is about 5.5, whereas I'm low 6s or 7 only on account of an elevated LDL. My trigs & HDL levels are normal. My 2nd Neph said that my cholesterol is not an urgent priority - apparently it will be more urgent down the track to fix it up. My GP & other Neph have stopped pressuring me by now. Statins it seems are getting a bit of a bad rap lately. There seems to be conflicting evidence of their effectiveness as well, it seems. But I accept that you and many others have found this to be an excellent med.
Yes, it is good news about just cutting back a little bit on my nuts, dark chocolate & a protein. Also, my coffee intake of up to 3 cups a day is fine but I shouldn't go over that. Also these cafe lattes, cappuccinos should be included in my protein count because of the high milk content, but one of these a day is okay. She also approved of my occasional restaurant food indulgence such as pastas, ethnic foods etc, as long as I don't eat out more than once a week or so.
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I was on statins (lipitor) for several years, but then developed muscle weakness. I was training to walk a marathon when my kidney function was probably around 30% and I started having a great deal of difficulty putting in the necessary miles, so my neph switched me to Zetia. I'm still on it now, but I could probably discontinue taking it. My HDL has always been high and my total cholesterol is now on the low side.
I didn't see a renal dietitian until a couple of months before I started dialysis. That's when my phosphorus level first went above normal. It was hard to give up dairy! Until then, I ate whatever I wanted to. It still took 40 years to go from diagnosis to ESRD when I was 50. I moderated my protein intake to a degree when I was in my 40s, but I didn't count the numbers. I just tried to pay more attention to how much of it I was eating. Everyone is different and luckily for me, diet doesn't seem to have mattered as much for me as it does for others. Maybe it's because of how much I've been walking for several years. I completed four marathons in my 30s to 40s, which meant walking several miles almost every day, some days up to 8 miles after work, and up to 20 miles some weekends while I was training. I'd step out my door at 7 am Saturday mornings and sometimes not be done walking until 2 in the afternoon. I attribute this, along with genetics, to keeping my cholesterol and blood pressure low, and my neph said she thinks the amount of walking I did is why I managed to stay healthy for so long.
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Athena, I am glad to hear that cholesterol is not an urgent matter for you right now. If you can control it with modifications in your diet, that's the ideal! If you find that you may benefit from the use of statins farther down the line, then it's something to consider.
Deanne, I did not realize that you were were training to walk a marathon! Wow! I knew that you enjoyed hiking long distances, but I didn't realize to what extent you were training. How impressive!
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I'm not training for a marathon now. These were past marathons. For now, my goal is to hike up Mt St Helens. I'm not ruling out another marathon in the future though.
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I'm not training for a marathon now. These were past marathons. For now, my goal is to hike up Mt St Helens. I'm not ruling out another marathon in the future though.
I should have written that you HAD BEEN training to walk a marathon. I hope you reach that goal in the near future :2thumbsup;
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I'm not training for a marathon now. These were past marathons. For now, my goal is to hike up Mt St Helens. I'm not ruling out another marathon in the future though.
Deanne, that is sure very impressive. I've always admired marathon runners but have never quite got to jogging in the past. Always walking fast instead. One thing I've heard is that very strenuous exercise may be a threat to kidney function and am careful to never overdue it with exercise. In your case, you had a high level of fitness so your body would have coped well but in my case now, I feel a little hesitant about taking up strenuous activity (which jogging/running seems to be compared to walking). Have you ever been given specific advice about exercise in the past?
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I just wanted to chime in here. I've been dealing with low kidney function since 1998 or so, altho back then it was a lot higher than I have known for years lol. My cholesterol was always marginally high back in my CKD days, but not enough to warrant treatment - especially since the "good" cholesterol was always high, and the "bad cholesterol was not at any dangerous level. Then, at some point, my total cholesterol got lower - I remember at one point it was 144! Now I am post-tx by 3.5 years, and my cholesterol and tri-glycerides are in the nice, normal levels. I have never been prescribed a statin, and will not take one if a dr recommends it because I have low kidney function (since my #'s are good. I've heard that is what some dr's do, anyway.) So does this mean I'm an anamoly? I live life living on the edge with late stage 4 kidney function due to permanent injury brought on by a biopsy. Creatinine ranges from 3.0 - 3.3. And no, I do not eat the healthiest diet!
KarenInWA
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Hi Karen! :waving; I'm not surprised that you've never been prescribed a statin; it doesn't look like you needed one.
How are you doing? I'm assuming your kidney function is remaining fairly static? Do your docs have anything new to say?
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Athena, I've never been a runner. I walked the marathons. I think My function was around 50% and I was spilling about 3 grams of protein/ day. My neph applauded me for doing them. The more active we are the better. I grew up being discouraged from being active and that was a mistake. I ended up feeling fragile, arty for me self, and focused too much on being sick. In reality, we can do a lot, almost as much as "normal " people.
I was far from fit when I started training for that first one. I barely made it through my first 3 mile walk. In the end, my marathon finish times were always a bit over 7 hours. It's important to remove the word "but" from our vocabularies and get out there and make an effort to live.
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Hey MooseMom!
Yes, my kidney function is static. I had a hospital stay due to chronic UTI back in Feb, where it got as high as 3.5 or so. I had a f/u appt with the transplant neph about 3 weeks later and it was 3.0! Yay!!! Since then, it has stayed in my baseline range of 3.0 - 3.3, except for a week or 2 ago, where I did the blood draw at night instead of the morning. I had a couple of fabulous shredded beef tacos for dinner, and my creat shot up to 3.5! Had another test over a week later, and it was down to 3.1 Reason for those tests was my tacrolimus levels were jumping around, and on that particular test, they were higher than my target range.
My neph of 15 years retires in 2 days, and then I will be under the care of a new neph office in the same town. This should be interesting. My neph told me at my last appt that my chart fills about 3 folders or so. Yikes!
Still just doing my thang, so to speak. My main focus is paying down my 2nd mortgage - I just want it gone. Then I may focus on building up my savings. I'd like to get a bigger place, but we'll see how things play out first. It would be nice to have a place big enough to house potential home dialysis supplies and a roommate if need be. My current home is waaaay too small for this!
KarenInWA
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Karen, it's great to hear that you're still working in spite of the all the medical issues and dramas you've had. It's true that eating cooked meat on the eve of a morning blood test will raise creatinine levels - but only in a transient way. (When I was in hospital of a renal ward, they served me 2 meals a day with meat each day!).
Due to different measurements between countries, what is your eGFR when in your baseline range?
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Athena, my eGFR is anywhere from 15-17. My story is sad. I received a live donor kidney from a non-blood related family member back in April 2011. It's an older kidney, but very healthy. However, it was slow to lower creatinine. It did get as low as 1.4, then creeped up to 1.7, so the dr ordered a biopsy to rule out possible rejection. That was at just over 3 months. Turned out to be the biggest medical mistake I ever consented to! The biopsy went fine, and i though all was well. No rejection and no tacrolimus toxicity. Then, just a few days afterwards, I woke up with no urge to pee. Went to the ER after calling the tx neph on duty, and ended up having an emergency surgery to remove an obstructing hematoma brought on by a fistula from the biopsy. I lost over 600ml of blood, had to have 2 units of blood and 1 dialysis session. Hospital stay was 5 days, creatinine got as high as 9.9. Basically, I had acute kidney failure. Creatinine slowly got better, til it stayed stable in the 3's, which means I am basically late stage 4 CKD as far as kidney function is concerned. All my other #'s are good. I am back on the kidney list as of July 31, 2013, but am inactive for the time being because my function is stable and I am feeling fine.
KarenInWA
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Karen, that sure is a sad story. So you still have your transplanted kidney in place, but with reduced functioning as a result of your trauma with the biopsy?
It's terrible having any sort of acute kidney injury when we have any sort of kidney issues to start with. I've had some recent personal experience with this (mine was from taking high doses of a hormone drug to treat another unrelated problem). It's terrible when we see Nephrologists just helplessly looking on when creatinine levels start heading north.
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Athena, yes, still have the transplanted kidney, plus my 2 useless shriveled raisins that are good-for-nothing lol!
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That's uncalled for and out of line. It's important for people to educate themselves before they start dialysis. It isn't for anyone here to judge them for their fears, frustrations, or anything they do to maintain their health and kidney function. It isn't unheard of for a pre-dialysis patient to find a new piece of information that we can all learn from, or provide a new prospective.
No one here has the right to judge anyone else, or make a snide comment like yours that might make someone feel uncomfortable in participating on this board. Those decisions belong to the moderators. We're here to support each other and what you said is exactly the opposite.
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Tbh I think this Athena woman is just looking for attention with all her ridiculous posts. Shes not even close to needing dialysis sure
I'm sorry that you find my posts ridiculous. You are most welcome to not read them in future. As for not being close to dialysis, I don't know what that means quite frankly. I usually only post in the Pre-Dialysis section, which is for all those who have not yet reached dialysis stage, whether it be far or near or somewhere in between.
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Please be nice to one another when posting on this thread. Everyone has an opinion and we can all express it nicely.
kitkatz-Admin
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Please be nice to one another when posting on this thread. Everyone has an opinion and we can all express it nicely.
kitkatz-Admin
Ha, kitkatz you are right on with "Everyone has an opinion and we can all express it nicely". :bow; or they deserve a :Kit n Stik;
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Thank you Deanne, Kitkatz and Talker for your support. We are all at different stages with this disease but we all share one common view & that is, we don't like dialysis. I have learned a lot on this site through listening to others and receiving so much wonderful advice. Thank you.
sp mod Cas