Binder blunder

[Fabkiwi06]

Managed to throw off my day today in such a dumb way.

Made my lunch and sat down to eat. Took a bite and knocked back my binders like I always do. Then... the phone rings! It was a follow up call for some estate stuff I'm trying to sort out, so I went in to my room to deal with that. Then the mail came so I had to deal with that. Then I noticed the cat needed a food refill so I dealt with that.... and so on and so forth.

About 20 minutes later, I suddenly got the worst nausea I've experienced for a while. I had to lie down. I couldn't figure out why, until I remembered my uneaten lunch (still sitting on the table) and the dose of binders I had gulped down. They even gave me a warning when they prescribed them that this was exactly what I should NOT do. Doh!

A handful of Tums and after I few minutes I ventured back out and tried to finish my lunch. I got about half of it down. It's been a few hours now and I'm still not feeling too hot. Lesson learned.

[kickingandscreaming]

Really?  What kind of binders are you using?  I haven't done this, but don't recall ever being warned not to.

[Fabkiwi06]

Fosrenol 1000mg since my Renvela isn't due for a refill for another week.

Basically, it's akin to an overdose... the meds would typically bind to whatever phosphorus was in the meal I just ate... but since there was no meal in my stomach, it just made it quite irritable. It's listed in the side effects. As long as it passes (which is has), its not harmful... just unpleasant.


https://www.drugs.com/sfx/fosrenol-side-effects.html

[Charlie B53]

I get distracted like that.  It's very easy to see something and know you have to take care of it NOW, otherwise you know you will forget.  And totally forget what you were originally doing.

Gotta laugh at myself when it happens.   Usually it doesn't cause pain.  That part sucks.

[kristina]

... I am wondering why I have never been prescribed any binders?
(I have been on dialysis-treatments for two years in coming December)
My monthly blood-tests show that I am in kidney failure but nothing else shows up.
Does it show in your blood test that you need to take binders
or is taking binders meant as a precaution to protect your bones
and the need of taking binders does not show in your regular blood tests ?
Thanks for answering this riddle from Kristina.

[kickingandscreaming]

If your phosphorus reading is out of range, you need binders when you eat something containing phosph, (protein foods).  Since you're vegetarian, you might not need them as much.

[Charlie B53]

If your phosphorus reading is out of range, you need binders when you eat something containing phosph, (protein foods).  Since you're vegetarian, you might not need them as much.

My diet does contain meats but somehow my kidneys even at a gfr of 4 manage to handle the phosphorus, keeping me well within range.   My downfall is my chili.  I suspect the combination of meat and kidney beans combined jacks my phosphorus if I don't take my binders.

LOL, have to laugh at the fact that my kidneys rebel eating kidney beans.  Who would have thought?

[kristina]

Many thanks for your thoughts, k&s and Charlie
and perhaps being a vegetarian helps a bit ...
Many thanks again from Kristina.

[Fabkiwi06]

From what you've posted before, it sounds like you have a very renal friendly diet and a little bit of function left. Some people are just lucky like that and don't need binders. It would show up in your labs if you needed them. In my case, my PTH was so high that it was causing my phosphorus to also skyrocket, so I was on a super dosage of binder (plus TUMS... which also can work as a binder in a pinch... who knew!). We've finally gotten the PTH under control, and the phosphorus is finally in range, and the binder dose has come down.

Issue here was I had run out of the low dose stuff and took some of the higher dose stuff to cover the gap. It would have been fine if I had glugged it down with a Coke, but just a few bites of food wasn't enough to stop it from wrecking havoc.






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[kristina]

From what you've posted before, it sounds like you have a very renal friendly diet and a little bit of function left. Some people are just lucky like that and don't need binders. It would show up in your labs if you needed them. In my case, my PTH was so high that it was causing my phosphorus to also skyrocket, so I was on a super dosage of binder (plus TUMS... which also can work as a binder in a pinch... who knew!). We've finally gotten the PTH under control, and the phosphorus is finally in range, and the binder does has come down.

Issue here was I had run out of the low dose stuff and took some of the higher dose stuff to cover the gap. It would have been fine if I had glugged it down with a Coke, but just a few bites of food wasn't enough to stop it from wrecking havoc.

Thank you Fabkiwi06,
Despite my dialysis-treatment, I have continued with my renal-friendly-diet and my "two little fighters" still function a little and still assist my dialysis-treatment and I am very grateful for this.
I also have noticed that my renal-friendly diet also assists the rest of my body to continue functioning as best as is possible despite my dialysis-treatment. Many years ago (1971/1972) a medical Professor advised me to eat very easy digestable vegetarian food to assist my failing kidney-function for as long as is possible. His reasoning was that easy digestable vegetarian food makes it easier for the body to "accomodate" my kidney-problems, because with easy digestable vegetarian food my body has "not that much work" to do with digestion and therefore can "look after" and accommodate my failing kidney-function much better. I still continue with my renal-friendly-vegetarian diet and hopefully my "two little fighters" continue to function a little longer.
Best wishes and thanks again from Kristina.

[Charlie B53]

Sorry Kristina but I'm lost when you mention 'easily digestible'.  I love most all foods, but have a problem with harder items as I've lost far too many teeth, so 'easily digestible' to me is cooked until very tender.  But I'm afraid that may not be what your Dr meant.

No doubt there are many advantages to the body of eating vegan.  I was brought up eating all types of meat and it would be very strange not to have some form of meat daily.  That and my great need for protein to keep my labs in check.   I have asked my dietician what vegans do to get this much protein in their diet?   I haven't a clue?   If this gets to be too much information perhaps if you wouldn't mind you could send me links and I'll read them all.  Thanks

[kristina]

Hello Charlie,
To be honest, I am "only" a vegetarian, not a vegan... With "easy digestible vegetarian food" the Professor meant to cook vegetarian food which is easily digested by a body with fragile-kidney-function and resulting health-issues.
For example, an easy digestible meal for me would be: a portion of mashed potatoes (mashed with almond milk) and cooked lentils (soaked in water over night and cooked for ~ 40 minutes) served with a fried egg and a green side-salad.
Another easy digestible meal for me would be:
Take a few very little tomatoes, cook them together with a handful of green peas and a tiny little touch of tomato puree plus a touch of Spanish Hot Peppers (guindillas) and serve it with a little portion of spaghetti-noodles.
Or another version I like is: take some specially-hand-made-dried noodles, cook them and then mix them with a touch of tasty Vintage cheddar cheese and enjoy it with a side-portion of green salad.
There are so many different ideas and versions and the real secret for us with kidney-issues is to make sure the portions are very little, so that no potassium-harm or any other harm can be done...
Best wishes from Kristina.

[kickingandscreaming]

To be honest, I am "only" a vegetarian, not a vegan... With "easy digestible vegetarian food" the Professor meant to cook vegetarian food which is easily digested by a body with fragile-kidney-function and resulting health-issues.

How are you getting enough protein on this diet?  I realize that lentils, cheese and eggs are protein foods.  On the other hand, being on PD where the protein is washed out every single night by the PD, I have to eat enormous amounts of animal protein and I still don't make good albumin numbers.  That's with eating 2 eggs and some cottage cheese for breakfast;  a turkey (or similar) sandwich for lunch and about 1/2 pound of some protein for dinner.  Then I even have to eat a protein bar.  And I'm still at only 3.7 albumin.  I would be much more vegetarian if I thought I could get away with it.  Needless to say, I do take binders.

[kristina]

To be honest, I am "only" a vegetarian, not a vegan... With "easy digestible vegetarian food" the Professor meant to cook vegetarian food which is easily digested by a body with fragile-kidney-function and resulting health-issues.

How are you getting enough protein on this diet?  I realize that lentils, cheese and eggs are protein foods.  On the other hand, being on PD where the protein is washed out every single night by the PD, I have to eat enormous amounts of animal protein and I still don't make good albumin numbers.  That's with eating 2 eggs and some cottage cheese for breakfast;  a turkey (or similar) sandwich for lunch and about 1/2 pound of some protein for dinner.  Then I even have to eat a protein bar.  And I'm still at only 3.7 albumin.  I would be much more vegetarian if I thought I could get away with it.  Needless to say, I do take binders.

My blood-tests have not shown a lack of protein and doctors who have regularly studied my blood-tests have never mentioned that I should change anything in my diet, in fact they always say that my vegetarian diet seems to have eased my life in kidney failure, because, perhaps due to my vegetarian diet, dialysis does not seem to pester me with overly too many side-symptoms and/or dialysis-side-issues. Perhaps my body has found a way to deal with my vegetarian diet since having started with it in 1971/72 (after my kidneys first failed and recovered a little to avoid dialysis until 2014) and perhaps my vegetarian diet may have also assisted my transmission from pre-dialysis to dialysis in December 2014 ?  Perhaps I should add here that I have always kept myself very slim and as fit as I possibly can be in ESRF through all those years... Recently there have been some interesting researches into kidney-failure and a vegetarian diet, mainly in Italy, Germany and Holland and it seems that, with the help of the medical Professor who advised me all these years ago, I may have been lucky to have been "on the right track" .
Best wishes from Kristina.

[Charlie B53]

Can it be that hemo does not pull much protein out of the body like PD does?   K&S and I are both on PD, and our protein demand is far greater than even so called 'normal' people.

I never thought a difference between vegan and vegetarian.  Different words describing the same thing.  NOT?

I have yet to read the thread on 'Fruits, Veggies Powerful Rx...'     Should really be a big surprise they are very good for us all.   Dialysis or not.  People tend to eat what is handy and easy, not necessarily good.   We don't pay near enough attention to what we really need in out diets.  I know I didn't.  I am still learning stuff that should be taught at very early ages.  That could possibly avoid many afflictions later in life.

[kickingandscreaming]

I never thought a difference between vegan and vegetarian.  Different words describing the same thing.  NOT?

NOT.  Vegetarianism allows some animal foods as long as it doesn't take the life of the animal (e.g. dairy, eggs).  Veganism is totally vegetable foods and even doesn't allow cane sugar (requires bones to process it) or honey which is from an animal.

[Fabkiwi06]

Strange. I'm also on PD, but I actually eat mostly vegetarian these days and I don't have a protein issue at all. My albumin is always comfortably above a 4. I wonder if it's something in the different amino acids that make up the protein in plant based foods vs animal based foods.

[Charlie B53]

WOW.  I still make under a liter of urine, all foamy from the amount of protein in it.  My drain bucket gets 'lined', coated inside with white sorta cheesy protein drawn out of me.  Enough I have to bleach it regularly or it soon develops a 'smell' which is not very good.   Those swimming pool chlorine tablets I put in there the other day are working perfectly.   Just the whiff of chloroine now, not altogether too bad at all.  Sure beats fighting to get that lid off and scrubbing.  lol

[Athena]

To be honest, I am "only" a vegetarian, not a vegan... With "easy digestible vegetarian food" the Professor meant to cook vegetarian food which is easily digested by a body with fragile-kidney-function and resulting health-issues.

How are you getting enough protein on this diet?  I realize that lentils, cheese and eggs are protein foods.  On the other hand, being on PD where the protein is washed out every single night by the PD, I have to eat enormous amounts of animal protein and I still don't make good albumin numbers.  That's with eating 2 eggs and some cottage cheese for breakfast;  a turkey (or similar) sandwich for lunch and about 1/2 pound of some protein for dinner.  Then I even have to eat a protein bar.  And I'm still at only 3.7 albumin.  I would be much more vegetarian if I thought I could get away with it.  Needless to say, I do take binders.

My blood-tests have not shown a lack of protein and doctors who have regularly studied my blood-tests have never mentioned that I should change anything in my diet, in fact they always say that my vegetarian diet seems to have eased my life in kidney failure, because, perhaps due to my vegetarian diet, dialysis does not seem to pester me with overly too many side-symptoms and/or dialysis-side-issues. Perhaps my body has found a way to deal with my vegetarian diet since having started with it in 1971/72 (after my kidneys first failed and recovered a little to avoid dialysis until 2014) and perhaps my vegetarian diet may have also assisted my transmission from pre-dialysis to dialysis in December 2014 ?  Perhaps I should add here that I have always kept myself very slim and as fit as I possibly can be in ESRF through all those years... Recently there have been some interesting researches into kidney-failure and a vegetarian diet, mainly in Italy, Germany and Holland and it seems that, with the help of the medical Professor who advised me all these years ago, I may have been lucky to have been "on the right track" .
Best wishes from Kristina.

Kristina, your experience in warding off dialysis for as long as you have has always been a very remarkable story and I am glad to be reminded of it again through reading your post. It has however just occurred to me though that you sound very unfamiliar with a lot of lab results that are part of the routine lab results for any kidney patient, in spite of being a very educated and knowledgeable person in general. I wonder therefore whether you've had constant testing for your kidney disease over the years & whether you still do?

[kristina]

To be honest, I am "only" a vegetarian, not a vegan... With "easy digestible vegetarian food" the Professor meant to cook vegetarian food which is easily digested by a body with fragile-kidney-function and resulting health-issues.

How are you getting enough protein on this diet?  I realize that lentils, cheese and eggs are protein foods.  On the other hand, being on PD where the protein is washed out every single night by the PD, I have to eat enormous amounts of animal protein and I still don't make good albumin numbers.  That's with eating 2 eggs and some cottage cheese for breakfast;  a turkey (or similar) sandwich for lunch and about 1/2 pound of some protein for dinner.  Then I even have to eat a protein bar.  And I'm still at only 3.7 albumin.  I would be much more vegetarian if I thought I could get away with it.  Needless to say, I do take binders.

My blood-tests have not shown a lack of protein and doctors who have regularly studied my blood-tests have never mentioned that I should change anything in my diet, in fact they always say that my vegetarian diet seems to have eased my life in kidney failure, because, perhaps due to my vegetarian diet, dialysis does not seem to pester me with overly too many side-symptoms and/or dialysis-side-issues. Perhaps my body has found a way to deal with my vegetarian diet since having started with it in 1971/72 (after my kidneys first failed and recovered a little to avoid dialysis until 2014) and perhaps my vegetarian diet may have also assisted my transmission from pre-dialysis to dialysis in December 2014 ?  Perhaps I should add here that I have always kept myself very slim and as fit as I possibly can be in ESRF through all those years... Recently there have been some interesting researches into kidney-failure and a vegetarian diet, mainly in Italy, Germany and Holland and it seems that, with the help of the medical Professor who advised me all these years ago, I may have been lucky to have been "on the right track" .
Best wishes from Kristina.

Kristina, your experience in warding off dialysis for as long as you have has always been a very remarkable story and I am glad to be reminded of it again through reading your post. It has however just occurred to me though that you sound very unfamiliar with a lot of lab results that are part of the routine lab results for any kidney patient, in spite of being a very educated and knowledgeable person in general. I wonder therefore whether you've had constant testing for your kidney disease over the years & whether you still do?

Hello Athena,
Since 1971/1972 I have had my blood checked-up once every month and my main interest (and fear) was, of course, the slow rising & fluctuating creatinine-level  ... and being on dialysis I still have my blood-test checked-up once every month. I also ask professionals on a regular basis if there is anything in my regular blood-tests that could suggest that I should or could improve on whatever and I am regularly answered, that my blood-tests could not be improved. I keep strictly to my fluid-restrictions, keep as fit as I possibly can, keep to my vegetarian diet and make sure that my weight does not change either etc., just to make as sure as I possibly could, that I keep as well as I possibly could whilst being on my dialysis-treatment.
Take care and best wishes from Kristina. 

[Whamo]

   My protein numbers used to be high, but my phosphorus was too.  Now I eat applesauce and egg white protein powder and 2% protein bars.  Now my phosphorus tests okay, but my protein is under 4.0.  I can't win.