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Is phosphorus an issue for you?

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  • #46
    Me, too. I am considering a water diet! lol

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    • #47
      Control of phosphorus while pre-dialysis is a tricky balance of diet and binders. While in Stage V and pre-dialysis, I was taking 2 ea. Calcium Acetate (generic equivalent of Phoslo 667) and following the kidney diet to minimize ingested phosphorus and potassium. It was a challenge keeping both results in the acceptable range. I only experienced one episode of all the symptoms of high phosphorus levels - itching, cramping, sleeplessness, loss of appetite/nausea, and this was the result of eating a good deal of processed meats (sandwich) and chocolate. I felt terrrible for several days but came out of it vowing not to eat these things again. I started home-hemodialysis via training in July 2012 and for the first 6-7 months was able to reduce my binders to 1X meal. During the past 6-8 weeks, my phosphorus levels actually dropped to below normal and I was instructed to stop taking my binders and loosen up my diet, e.g. eat more phosphorus. I've been off the binders for nearly 2 months and my phosphorus levels are in the acceptable range. This is all the result of continued dietary restrictions, though somewhat relaxed and a regimen of 5X week daily home hemodialysis. My treatments are 30 liters of dialysate and require 2-3/4 hours to complete. I am now participating in a NxStage trial for the use of the System 1 cycler in nocturnal hemodialysis. Nocturnal treatments run from 6 to 10 hours and do an even better job of removing phosphorus and potassium because of the long duration. I am expecting to be able to take even futher liberties from the kidney diet as a result, though I've lost my taste for most high phosphorus foods that I ate freely before reaching Stage V ESRD.

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      • #48
        It is Potassium that is an issue for me (Donald Komlenovich not Phos

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        • #49
          I've been on Hemodialysis for 18 months and have NEVER taken so much as 1 single binder tablet. How, you ask? It's called following a renal diet.....correctly and without waiver. My albumin is typically 4.4-4.6 and my phosphorus is anywhere from 4.0-5.2. The renal diet works. The problem is that most patients either
          refuse to follow it or do not bother to stay on it. I am living proof that you can eat well and maintain a good phosphorus level if you are willing to behave yourself at the dinner table. Problem is, DaVita ( as well as many other health care providers ) are too quick to coddle patients and hand out prescription medications to
          make it possible to ignore personal responsibility. It's been my observation that the majority of dialysis patients are more interested in complaining about their
          health issues than actually taking some responsibility for their own health. I had a kidney transplant for 25 years prior to starting dialysis and you don't accomplish that by accident. Rigid adherence to a proper diet and taking medications EVERY DAY gave me a phenomenal quality of life. I am waiting for another chance to get transplanted. In the meantime, I will continue to manage my dialysis at the highest level because anything less is unacceptable to me! Be honest with yourselves: how much are you really trying to do the right things? How much effort do you actually put into eating correctly? Do you skip treatments? Do you take the medications that have been prescribed for you? Are you active on a daily basis? I'm 46 years old and in great shape for someone who has ESRD. Truth be told, I'm probably in better physical condition than the majority of the American public and I am saying that as a dialysis patient! If you are experiencing problems related to dialysis, ask yourself if you are really doing EVERYTHING you can on your end to help yourselves?

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          • #50
            That is an excellent, truthful post. I am not on dialysis and hope I never get there, but I have learned that DIET, and STRICT adherence to it is the key to keeping things in check for as long as possible. My numbers improve when I don't stray off the strict diet and get worse when I do. I'm not just sitting back and putting my life in the hands of 'professionals'.........I've experienced way too much wrong, contradicting, uneducated advice from toooooo many of them!!! And not just regarding my CKD. They all seem to have their own little 'nitch' nowdays and know little about anything else. I can't begin to tell you the circus my husband has been through recently with doctors telling him one thing and the next dr saying it was wrong, changing his meds, etc. etc. It's been a nightmare.

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            • #51
              I echo tmeck68's observations and position. The one time that I did experience all of the physical and several of the mental symptoms of kidney failure happened about 7 months before starting HHD. I had been following a renal diet and taking binders to manage my phosphorus levels and for about one week I strayed from that diet and consumed processed meats and chocolate. The week following, I suffered immeasurably with energy loss, loss of appetite, nausea, foggy thinking. sleeplessness and all the other symptoms of kidney failure. I thought I was circling the drain and in immediate need of dialysis. In about one week's time after returning to the kidney diet, the symptoms vanished and I felt fine.

              The strict adherence to the kidney diet caused my phosphorus and potassium levels to fall below the minimum acceptable threshold not long after starting HHD. I was told to stop taking binders and even advised by my renal dietitian to start eating cheese, chocolate and bacon. I said that I couldn't because that experience I had some 7 or 8 months earlier "gave me religion" and I lost my taste to any foods high in phosphorus.

              I take a single binder with lunch and one with dinner and my phosphorus and potassium levels are consistently in the low 4's. I do cheat in moderation on the kidney diet with some occasional cheese and chocolate, but I am still very careful with processed meats.

              As an HHD patient, I've never missed a treatment in the nearly 3 years I've been on the modality. I am on a single BP med, which may not be necessary as my BP's are in the 110's over 70's and during treatment usually in the 90's over 60's.

              The combination of nocturnal and short daily treatments I conduct produce not only excellent lab results but I have no restrictions on my active work and play life. I feel as good or better than I did before reaching the point where my kidney function (PKD) necessitated dialysis.

              If you are willing to embrace "process discipline" in diet, medication, treatments, you are bound to live a fuller life, free of the complications and set backs that are prevalent in those individuals who choose not to embrace "process discipline".

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              • #52
                Totally Frustrated with VA neph…. The switched me from my Lisinopril to a Calcium Channel blocker.. with no warning why my BP went from an ideal 118/62 to 140-150/70…and the reason is my body was too high in potassium and phos last renal test.

                If they had ASKED ME anything I could have told them I knew where the higher amounts came from in my diet, due to changes, and ASKED to give me 30 days to reduce via diet alone.

                But no, they just tell me nothing, switch me and I will not tolerate a bp that high, I've had one stroke, and this is nothing to mess with.

                I follow Dr. Walser's protocol for a very low protein diet..but I am still learning and going from ~60 protein down to <30 takes time, also this is a vegetarian diet with amino acids supplemented. No one asked and I had no time to explain. Stupid.

                I am NOT willing to take Amlodipine, and yet get no call back from the head Neph and "my Team" whom I am supposed to trust.. the same team of revolving VA nephs I never see twice, who spend 15 minutes of a 20 min appt reading my chart rather than asking me a single question. Don't explain anything, and expect me to like it!

                yes Lisinopril holds on to potassium and maybe phosphorous in the blood, but at least giving me a CHANCE to alter my diet could fix this easily.

                CKD patients need to be on ACE inhibitors.. yanking me off was not good, I understand the concern for my heart…but I have NEVER been high in Phos or Pot before.. ONLY after eating meat as advised by the LAST transient Neph who saw me for 20 min. When I eat met my CKD function falls…simple.

                so I am arguing for Lisinopril, and the chance to alter my diet, eat LOW potassium/phos foods, make the changes I need to make THEN we can see if we need to drop a IDEAL drug!!
                <rant mode off>

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                • #53
                  I am Canadian but follow DaVita closely. Information is great only I cannot find out what happened to the Food Analyzer as I followed this closely to check for Phosphates and Potassium in foods. I have not started dialysis yet but have to watch for these in my diet as this was the only source available. Does anyone else use the Food Analyzer and if so how do you access it? I have sent e-mails and tried phoning but have not received a response.

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                  • #54
                    Originally posted by denglo70 View Post
                    I am Canadian but follow DaVita closely. Information is great only I cannot find out what happened to the Food Analyzer as I followed this closely to check for Phosphates and Potassium in foods. I have not started dialysis yet but have to watch for these in my diet as this was the only source available. Does anyone else use the Food Analyzer and if so how do you access it? I have sent e-mails and tried phoning but have not received a response.
                    Hi denglo70, I hope you had a nice weekend! I'm glad that you follow and find the information offered through DaVita helpful! I'm sorry you've had a hard time finding the Food Analyzer tool. We did recently update myDaVita, which may be the problem. The Food Analyzer is located under the DaVita Diet Helper, which is a tab at the top of your myDaVita page. You can also access it here: http://diethelper.davita.com/food-analyzer. It's a great place to find the nutritional information for specific food items, including their phosphorus and potassium content. I hope this helps! Please reach out to me if you have any additional questions. Thank you!

                    Your community manager,
                    Kelsey

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                    • #55
                      I have a question, if you have high phosphorous level, lets a little over 6, and you start taking your binders, how long will it take to return to a normal level. How long doe the phosphorous stay in your body? Anyone?

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                      • #56
                        Originally posted by Kluster11 View Post
                        I have a question, if you have high phosphorous level, lets a little over 6, and you start taking your binders, how long will it take to return to a normal level. How long doe the phosphorous stay in your body? Anyone?
                        Hi my name is Erika. I am a dietitian in VA. To answer your question, that all depends upon what binder you were prescribed, the dosage, when during the meal you take the binder, and what you were eating. But generally speaking, you should see an improvement of some kind immediately. Phosphorus is removed by dialysis, but only a small percent is removed. This is why diet and binders are so important. Generally, the longer your dialysis, the more phosphorus is removed. This is why people on nocturnal (night time; 6-8 hours long) dialysis, typically have better phosphorus. For diet assistance, I highly recommend davita.com diet helper tool and utilize your clinics dietitian.

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                        • #57
                          Originally posted by nannyg View Post
                          Re: Is phosphorus an issue for you?

                          Thanks Glo, its my husband who is on dialysis forabout 6 weeks now, he's taking the tumms and the Dr called out the binders and it cost 800.00...no way can we afford that, looking for help from other sources, Ins, ect appreciate any advice
                          Talk to your dialysis crew. There are grant monies and the kidney foundation can help. Ask your insurance person at the clinic...they helped me

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