I just got labs back. I was happy to see the crazy good numbers. Even with 2 hours3 days a week. only. MY creatinine went down from almost 7 to 5.89. My bun, pth, potassium all went down and are in range. Calcium in range. Glucose in range. A1C 5.3. the only number that was bad was phosphorous which has slowly crept up to 6.4. I was taking Tums 1500mg to help, but it bound me up so bad I cut to 750. Here's the joke folks....my adequacy or Kt/v is 3.2.....I still pee. A LOT
I know that 5.5 is considered high phosphorous for dialysis. Is anyone else high and what do you do. Do you use a binder and how's that going?
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Ive been off dialysis since transplant 4.5 years ago but I would highly recommend a phos binder. Phosphorus is also in dairy products so if you havent already you might cut down on that. Of course please talk to your nephrology/dialysis team before taking advice from online as all of us differ in how our bodies process different things.
I would go on the phosphate binders. They do make a big difference. Only problem is remembering to take them before eating. Not sure how levels are calculated in USA but in Scotland a level of 1.67 is considered high. Once mine went up to 2.4 and I got a proper telling off from the nurse 😫...I just googled Tums and quite a few site don't recommend them if you have kidney disease. It can upset your electrolytes. It's maybe different if you are on dialysis.
thanks Ziggy. Your high level is considered 1.5 to ours 4.5. Not sure what the numbers mean, but your 2.4 would be equal to my 6.4. Did you have to do binders?
I would do binders but not more dialysis. I did a lot of research on phos removal from dialysis, and it is a big issue because it does not remove it well. I know, Tums are not great, and they are actually in conflict with one of the drugs I take. And, for me, they did not work. My diet is very careful from years of being overprotective. I read labels and know what I am eating. NO additives anywhere. Although I love cheese, I even cut that way down.
My phosphor has been as high as 11, and as low as 2.5. In the beginning, I thought I could sneak in a 6 pack here of there. Beer. Nope. Get binders, I know it's a hassle, and half the time they get you running other time they are a cork. You catch me. Take them religiously. Even an 8 oz shake, pop 3 of them. Big bad dinner, take 4. Just be prepared for changes on the bowels.
Also, peeing alot, I'm jealous. I forget a nice time in the mornings. When you are far gone as I am ESRD, any day with urine to dispose of naturally without 2 needles in your arm, is a great day.
HI, and thanks for the reply. It gave me great comfort. Can I ask how often and long you do dialysis?
My Neph is on a war path to get me to do more dialysis. I have flat out refused because I do not need it. I barely get off the maching and run to the bathroom to pee. And as I tell my tech, it is like a beer piss. (Like after you have been drinking all night and finally go and pee.) haha
The phos and bi carb are the only two issues. I went back to labs from 2011 and they have always been an issue for me. My Phos has always been high and since 2017 above 5 and my Co2 low because of the Psoriatic arthritis. And Now..... NOW its an issue? I think she is looking for billing.
Sorry for delayed response. I've been doing dialysis for a few years, but the kidneys have been trashed 30 years. Bergers disease. My sessions are 350 rate at 3.5 hours - Hemo Dialysis, 3 days a week. Take away fluid anywhere from 1 Kilo to 2.5 Kilos, I weight 58 kilo (it's a tiresome pull usually with cramps). Caught early on when I was 18. Being 18, i felt invincible, as most kids do, so I let it go. Eventually it caught up with me after a big bender party. Swollen ankles and legs, etc. Woke up in a hospital bed, with tube out my chest. After that, I knew it was a one way trip. Once you start dialysis, kidneys just get weaker and weaker, ultimately relying on the machine.
My phosphor was very high, and the doctor kept yelling at me and with the help of the nuritionist..scare tactics. They warned me of limb amputation etc. Finally, I just gave in. Adjusted some intake of lifestyle.
It's difficult to explain, I just try moderation now with everything. I still avoid any phosphorous like the plague, but once a month I get my groove on. One thing that helped greatly is there are databases in Iphone or Android (apps), that has like 400k different foods, ranging from fast food to just the food itself; Say Taco bell hard shell taco vs just a lb of ground beef. etc. It allows you do get a pretty darn accurate number for Phosphor and Potassium. So you can get a running total of the amount. It will allow you to manage yourself without guesswork and lab work isn't a surprise sticker shock. I carry binders with me everywhere. Pockets, my cars, my jackets, etc. Keep them everywhere.
I have tried two different binders.
Calcium Acetate 667 mg x 3 or 4 per meal. These get me diarrea but they work.
Sevelamer Carbonate 800mg 3 or 4 per meal. These constipate me.
After some trial and error, I now take 2 calcium acetate and 2 Sevelamer Carb per nutritionist. Hopefully you can find a balance for your body.
You sound young, and I am sorry your journey has been rough. I did see the Neph yesterday, and unbelievably, there was no fight. We are going with a binder, low dose for now and see what happens. The good news is that she is keeping me for now on 3 days a week, only 2 hours. She would like to see me slowly increase, but no pressure. Like I said, and she agreed, my labs look great with mostly improvements except the phosphorous. I am at a kt/v of 3.2 still.
that the only thing I have a problem with is my phosphorus . My is up and down it been like 6 since I came home from hospital for some reason when I’m hardly eating it is high . I do take a tum with meals I was taking two tums with meals and that kept it low but my calcium cane to high so I was switch to one and I admit sometimes I forget to take . When I was in the hospital they gave me a binder they were so big I couldn’t swallow they had to break them I to break them into four pieces they prescribe them when I left but those pills were 148 dollars my doctor told me to go back to tums if the tums don’t work we will figure something else I go Tuesday for labs.
Thanks for the info. I noticed with the Tums that my calcium went up. It has always been stable and normal. I see you are on PD. I wonder how different that is for Phos removal than HD.
According to my lab sheet the range is 3.5 to 5.5. I'm doing 2.45 hours in center and mine has ranged from 4.2 to 4.5. I don't take binders and pretty much eat what I like. I'm not a big cheese fan and I can't do dairy as I'm lactose intolerant and really don't like most dairy products anyway.
The only low values are protein and PTH every thing else is well within range. I'm having some issue with eating meat as I just don't like the taste anymore. I know I need to start back walking to bring my PTH back up again but that's been a struggle too.
I still feel great even after a session and I too pee a lot still. My kt/v was 1.9 which the range for hemo is 1.2 to 2.0 so they are happy with my lower time on the machine.
When I did PD I had to take Sevelamer Carbonate binders but that only lasted about a month before my levels were back in range and I still have a mostly full huge bottle of the stuff.
One of the things they keep telling me is that the in-center will not let me do a low dialysis amount like 2 hours..... AND my kt/v was 3.2. The only thing I can say that dialysis has done is my energy is more consistent. But I am so stressed about it.... that I do not sleep.
Yeah I was told 3 hours was the minimum that they would allow but lo and behold when I looked at my timer Thur it read 2:45 as the UF time. I asked and was told my neph was the one who had decreased it.
We are buying a house that is only 3 min from the center so it'll be easier for me to drive there in the dark. It's got enough room that I've been rethinking home hemo but I'm still not sure if I can put the needles into myself. And some of the other issues people have reported make me kind of leery still. And DH is still not interested in my doing that. I don't mind in center. I have figured out how to stay warm and the lesser time now means not much time there.
I respect those who do home hemo but still not interested in it for myself. I think you've had more pluses than minuses on your journey so be proud of what you have accomplished!
Just a thought....diet? I urinate alot (like the old days)... so its not the fluid its the toxins and needimg a better balance with dialysate?... idk...maybe im lost... all in all get the phosphorus down itll eat the calcium right?...= no bueno ...wishes of a prosperous new year👍🏻
I just don't trust what anyone says and I don't trust myself to be able to do a good job. After the nightmare I went through when PD failed I don't ever want to go through that again. I know in center isn't for everyone but I prefer having people around and if I have a real problem I know they'll send me to the hospital.
When PD failed and I ended up in the hospital I was so out of it and my husband finally told me I almost died it was so bad. That of course is influencing my decision. But that's just me. I know you have your reasons for wanting to do home hemo and I agree that it sounds like a good plan and I'm sure things will work out eventually. Hang in there you have made some great progress.
I too do not trust any more. I know that the almighty $$ is influencing things a lot more than they are admitting. And truthfully, if they push the 3 hours, IN -Center is going to be more likely. And here is why. I can only ONLY make 2. 5 hours without peeing. It is not a joke, it hurts and my BP goes way up. They all know this. By the time the machine does all the checks and calculations during the treatment and if there is any issues like pressures and we have to stop, it puts me to the utmost max I can make it. The doctor actually told me to get a diaper or put a towel down in the chair and pee on myself. Wow, Patient-Centered Care at its finest.
Holy crap ... a diaper. When PD was failing and I was still at home I was having issues with pooping myself so I got some of those Serenity underwear for when we had to go to the doctor that was an hour or more away. They are NOT comfortable and really don't help with "leakage".
Luckily I can make the 3 hours before peeing but barely. I go before and immediately after. I've seen a few people at the center who have disconnected so they can go. It adds time when you do that.
Have you seen a urologists'? Perhaps it's a physical problem that can be documented and that might help with the short time. I know how painful it can be "holding it" as I've had to do that before too.
Yes I have seen a urologist. I have always been this way and I am sure that my physique has a lot to do with it. Also, my uterus is tipped and no one ever said which way and if that is putting pressure on me. Even when I sleep, four hours is the max but 3 is more common. I have cut back on fluids which is making me dehydrated. But fluids retention has never been an issue so on my weekends when I have no dialysis, I can drink lots.
I don't understand why they won't accommodate you. I'd think with you in the chair for only 2 hours they could get another person in and more $$$ for them.
At my center there are all sorts of body types, thin, person's of size, some are using CVC's like me and have no desire to go to a fistula. A couple come in with wheelchairs, some have amputations, some use a walker and others use a cane. I think several are on for four hours which seems so awful.
This is just T,TH,S from 7 to 10 so I'm not sure what other days/hours are like. And my center is independent and not associated with Davita or Fres....
I'm sure there's a little more freedom but still have to abide by CMS or whoever oversees dialysis centers and I'm sure they are for profit too.
So far no restrictions on food or fluid. I plan on going back into the office on MWF's but that will be a big adjustment. I'm used to getting up and going to the bathroom as much as I need to and snacking all day as much as I want. Unless I carry it in with me I'll have to get something from the machine.
They will most likely give you a Binder...and they actually work...I have little jewlery bags that I keep my Binders in about every coat, purse and glove box ...They can upset your GI track a bit, and I have found if you take a bite of food and then take your binder...let that sit for a minute or so and then finish whatever you are eating or drinking will make ALOT of difference...My Phosphate sits at about 4.8. .Been on PD for almost 3 years...Urine output about 1500 ml daily and clicking along..Thankful for every time I pee !
Also I might note: Binders are expensive...my Insurance doesn't pay that well on them...But GoodRX really helps !
So Rhen, Let me ask you a personal question.... how do they affect your bowel movements. I slammed shut and was making boulders that I had an awful time passing just on Tums. I know this is TMI, but it will help me. HD, lack of fluid intake, and sitting for hours all create constipation as it is.
I feel that the Binder helps keep me regular....Unlike Tums because of the Calcium...In fact you may go to a bit of Diarrhea at first, but that tapers off...
If you are pulling a kt/v of 3.2 they shouldn't have you on fluid restrictions
Actually not at all. I have no edema at all. They do not remove fluid. But if I drink like I used to, which is a lot of water, I cannot even make 2 hours....... 6 years since stage 4 and from preventing dialysis and now everything has changed. This all has come about because I probably started way too soon. Now I am trapped.
When to start Dialysis is the million dollar question...I also carry a kt/v of over 3...no edema...and have wondered if I started too early...but my labs and well being make me feel I did the right thing...Not a trap...consider it preventive care...keeping what little kidney function we have, for as long as we can keep it will benefit us greatly !...I let the Dialysis take the toxins and let my little kidneys just work on fluids...together a great team..I can understand drinking less water before your treatment is a good idea as long as you replenish once unhooked...hang in there...your body still needs time to adjust...Its our Beauty Treatment!
What a fabulous attitude..... which mine certainly needs adjusting. And yes, the bottle is made in the refrigerator and I get right on it because I usually have a headache.
You have done an awesome job...pat yourself on the back a bit...Kidney disease is scary and depressing...and not alot of new technology in the field...I would just be happy if we had a Dextcom (like Diabetics have) that would instantly tell us what our Phosphorus, Calcium, Potassium levels are...itcwould aid us greatly in what our next meal should be...I asked my Neph why they didn't make something like that fir Kidney....He told me they could make one easily....but because there are more Diabetics than CKD they don't bother...its not where the money is...that made me cry alot...
Other than each other...we are basically on our own kid...
One thing I wanted to add. My phosphor has always been high, I have it in check now. FDA isn't required to give you breakdown of Phosphor in contents of meals or items.
The Phosphor is hidden in the nutritional info ingredients. Look for anything phos*. If it has it take binders. Like many drinks, beer, dark soda, bottled tea. Yep, not brewed tea, lipton brew teas and similar, are loaded with phosphor. Some people find out often, it was a single item consumed multiple times a day. Onion rings, battered fish, favorite bottled tea? Phosphor heaven. Phosphor will be the end of me, but I'm not running to it. I'll run while I still can. haha.
Also the phone apps for nutrition are very helpful. Capturing Phosphor, Potassium and sodium. Those are your 3 lifetime wars if you are on this forum.
Thanks for replying. Trust me, I know where phosphorous and all the things you mentioned are not anything I consume or actually ever had. Soda, or pop, is the worse thing you can consume. I appreciate your input, but trust me, diet is something I pretty much an expert on.
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