My husband started PD last month. He has been advised for about a year to take phosphate binders. However, he refuses to take them for some reason. He’s fairly compliant in other ways, (pd schedule, other meds). Any ideas of how I can impress upon him the importance of this medication? :?:
Has he never taken them or does he forget to take them some of the time? How are his labs? What has his doctor, nurse, dietitian, and social worker at the dialysis clinic told him about his labs, high and low phosphate foods, help to afford the binders, and the complications that can arise due to not taking phosphate binders?
If his labs are OK without them, he must be doing a good enough job controlling his phosphorus intake that his body can handle it with the amount of dialysis he’s getting. If his labs for calcium, phosphorus, and/or PTH are out of range, this is a sign that he has renal bone disease. His bones are slowly disintegrating. You don’t say how long your husband has had kidney disease, but an x-ray of his hands would likely show changes from how healthy bones look if his labs have been out of whack.
This may sound like a lie, but I swear it’s true. I knew a patient who didn’t take his phosphate binders as prescribed and he didn’t watch his phosphorus intake. The dietitian had talked with him about diet and binders and even showed him x-rays of what could happen. One day the bones in his neck broke requiring him to be hospitalized to have them stabilized. Unfortunately, he died while he was in the hospital recuperating from the surgery. I’ve known other patients that have had bones break from doing nothing more than walking or stepping off a curb.
Here are the National Kidney Foundation guidelines for bone metabolism and bone disease in chronic kidney disease:
http://www.kidney.org/professionals/kdoqi/guidelines_bone/guide5.htm
I’d like to add a bit of background to what Beth wrote.
One of the jobs of healthy kidneys is to remove excess phosphorus so blood levels are constant at all times. When the kidneys fail, dialysis (regular hemo or PD) removes only a small amount of phosphorus–which is found in nearly all food. High blood phosphorus levels are a signal for the parathyroid glands in the neck to start pumping out parathyroid hormone (PTH).
In the short term, most people on dialysis find that if their blood phosphorus levels are high, they itch, severely, all over. This is annoying enough to motivate most folks to take their binders.
In the long term, as Beth pointed out, the bones become fragile and easily broken. But a couple of other things can also happen if phosphorus levels are not kept in control:
1). The parathyroid glands become enlarged, trying to put out enough PTH to compensate for all of the phosphorus in the blood. PTH levels skyrocket to a point that is impossible to control with drugs. Surgery may be needed to remove the parathyroid glands and avoid further damage to the bones. Having this surgery once is unpleasant. Needing to have it again, which can happen, is dangerous. Most of the problems with parathyroidectomy surgery happen in subsequent operations.
2). Rarely, excess phosphorus will bind with excess calcium in the blood to form crystals. These crystals are sharp and painful, and can deposit anywhere in the body–the eyes, the skin, the blood vessels. This is called extraskeletal calcification and it can cause gangrene, loss of limb, and death. As I said, it’s rare, but it does happen–and it doesn’t have to with good management.
If your husband is unalterably opposed to phosphate binders, he may want to rethink his choice of dialysis. Nocturnal hemo, done as many days a week as possible, removes enough phosphorus that binders aren’t needed.
My husband had a L nephrectomy in 1996, because his L kidney was producing renin, elevating his blood pressure. The surgery was delayed due to fear on his part which caused renin damage to his right kidney. His creatinine levels ranged from 2 to 4 till mid 2005 when they started jumping upwards of 6. He’s 33 years old.
He doesn’t pay much attention to his diet and was not until he started PD compliant with his medication in general. He is also a smoker (2ppd).
As to why he doesn’t take his binders, I can’t get that out of him. He might take them once every other week and then not at meal times.
If he doesn’t take his binders at mealtimes, they’re not doing him any good. You might want to read this module on Nutrition for PD from Kidney School. It discusses lab tests, including calcium, phosphorus, and PTH as well as why and when to take phosphate binders:
http://www.kidneyschool.org/pdfs/Module9PD.pdf
You might also want to read this tip for new patients from an in-center hemodialysis patient who submitted it when he had been on dialysis 15 years. http://www.lifeoptions.org/stories/stories.php?story=l8
You might also want to read New Life, New Hope: A Booklet for Families and Friends of Renal Patients. If you read this free booklet, you’ll see that you can only do so much. Your husband has to want to take care of himself. Being the “food police” or “medicine police” can cause strain in a marriage.
http://www.lifeoptions.org/catalog/pdfs/booklets/education.pdf
Here are some tips to share with your husband about how to remember to take his binders:
http://www.nwkidney.org/images/website/docs/nutrition/phosphate.htm