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This week (Dec. 2012) my labs showed my phosphorus at 5.0. (A normal phosphorus level is 3.5 to 5.5 mg/dL) It’s a personal best so now I feel I can blog about it. My previous best was 5.5 and ever since I attained that goal, the doc and dietitian have been after me to get to lower. It’s been a problem for me going back over the 4+ years I’ve been in dialysis. And, from conversations I overhear as the doc makes his rounds, I’m not alone having a problem with phosphorus control.
I’m not absolutely sure how I got the 5.0 number. I’ve been actively working on this problem for a while. It’s been like chasing a ghost and complicated by the fact that the measures are generally not taken that often. At least that the case where I dialyized previously. They only did labs once a month and, for phos (I will abbreviate it from now on) control, that’s really not often enough. Where I dialyze now, they take basic labs every week.
It’s costly for the center to take weekly labs but my doc is really proactive about getting and keeping his patients as healthy as possible. Fluid control, protein, phos, potassium and a few others are taken weekly. Once a month they do a full lab. Although costly for the center, it’s important for the patients. Phos and Potassium are my two worst competitors and they probably are you too.
To reduce Phos there are two methods; taking binders and avoiding foods high in Phos. You see posters at every center about high and low Phos foods. There are a lot of foods high in phos and I miss every one of them! But, I do my best at avoiding them and replacing them with other foods I like. I love lima beans but green beans are low, so I eat them instead. It’s just a fact that I have to avoid those high Phos foods. But, alas, we can’t totally avoid Phos from foods. It’s everywhere! So we take binders. The National Kidney Foundation has a good website page with information about what to substitute for high phos foods. Take a look at their suggested substitutes.
A binder is a chemical that binds with the Phos in the stomach so it’s not digested. Dialysis doesn’t remove a lot of Phos so it’s important not to eat foods high in Phos and to take binders to decrease its presence in the blood. High Phos over time will result in damage to the bones and harden the organs and blood vessels. I don’t want that. I’ve got enough trouble with kidney failure. I don’t need more.
There are several types of binders available and each person seems to have different results with each. Try them all until you find what works for you (and avoid high Phos foods. of course). I find a combination of Calcium Acetate (CA) and Renvela works for me. I’m still working on the number of pills to take but based on the recent labs, I may be onto something. I take a one or two CA before I take my first bite of food along with one or two Renvela and CA depending on the amount of Phos in what I’m eating. If I’m eating a salad or vegetables low in Phos, I take one of each. If I’m eating meat that may contain a lot of Phos, I take two of each. I may take another combination of the two if it’s a large meal. To remind myself, I place three or four of each beside the plate and take them as I eat the meal. Basically, I am operating on the basis that I can’t take too many binders and that seems to work. If I think about it, I will take a Renvela about 10 or 15 minutes before the meal so it has time to digest before I eat. But that’s why I take the CA first generally because it’s a capsule and will dissolve more quickly. I want the binders in my stomach before the Phos-laden food hits there. As I understand Phos is absorbed very quickly so taking binders too long after eating will not be of help.
I carry binders with me all the time so in case I’m eating away from home, I can still take them. I carry them in my pocket in a pill container from Renvela that the dietitian gave me. I also keep a container in the car. I place bottles of binders on the dining table, by my bed, on my desk, by my recliner in the TV room, anywhere I might be eating. I don’t let myself get away with not taking my binders. It’s that important.
Study those Phos posters and ask the dietitian for any handouts available that identify high and low Phos foods. I keep them on the fridge, too. Avoid the high Phos and enjoy the low Phos foods. Before you grocery shop, review your shopping list against the Phos list and scratch off the high Phos foods. Don’t even buy them! When the dietitian makes rounds, review your numbers and discuss what you consumed that week. Be truthful. You’re not hurting anyone but yourself if you’re not truthful. That’s how you learn. If you can’t recall, keep a diary of what you eat and share that with the dietitian. If the dietitian doesn’t come around, seek him/her out to discuss your numbers. Be proactive.
Phos control is a personal responsibility. Dialysis only removes a portion, so you have to avoid it. That’s why there’s so much emphasis on avoiding high and low Phos foods. You have to do this yourself. No one can do it for you. The results of too much Phos for too long are terrible. “High phosphate blood levels allow the phosphorus to bind with calcium causing calcification, or hardening, of the organs and soft tissues.” You don’t want that.
Good luck. I’ll keep you posted on how I’m doing and, if you have some ideas or methods that have worked for you, leave a comment. You may help someone with their problems with Phos control.
I found this link to Davita and their Phosphorus Challenge. Give it a try. Maybe it’ll help.
Update: 07/29/13: Here’s a article about a study that loks at the effectiveness of non-calcium binders (Like Renvella) versus calcium binders (like calcium acetate). It is a bit wishy-washy about the outcome but still contains some important information. to read it CLICK HERE
Update: 4/9/13: If you’re taking binders and still have high phosphorus, consider taking more or trying other binders. For example, I take a combination of calcium acetate and Renvella. That seems to do it for me.
Update 12/8/12: I came across this video from Renal Support Network about Phosphorus. It’s pretty simple but makes some good points. As we enter the Holiday/Eating Season, it’s really important to control Phosphorus.
Update 8/19/12: I found this post about Binders and CKD that is quite informative. If you’re NOT on dialysis yet but diagnosed with CKD (Chronic Kidney Disease) this is important because it says taking binders is NOT safe for CKD patients.
© 2012 DevonTexas