A Good Day To Be With Friends

In the "tips" column I wrote last month, I noted that not all days are created equal, and you have to deal with the tough days when they come along. I wouldn't say that yesterday was extremely tough, but it was the toughest day we've had this week, because Linda didn't feel her best.

She had dialysis Tuesday and by Wednesday afternoon was experiencing some shortness of breath. This happens sometimes between dialysis treatments because of the "dry weight" issue. You dialysis patients already know where I'm going with this, and I'll try to explain it simply for those of you hoping to learn something about dialysis from this blog.

Some dialysis patients have a very minimal kidney function but far from enough to survive without dialysis. Linda has no kidney function, so any fluid intake stays in her body until the next dialysis treatment. It has nowhere to go, so she has to limit her fluid intake to roughly 50 ounces a day. That's a reasonable amount under most conditions. At an average dialysis treatment, she will have 5-8 pounds of fluid removed, and the "dry weight" is her basic weight that is what she ought to weigh after dialysis. The nurse has a formula to work with during the dialysis to achieve this weight, but there is some guesswork involved, and you don't know how close you are to your dry weight until the treatment is over and you get weighed.

After her dialysis on Tuesday, she weighed about 2.5 pounds above her normal dry weight. Then we took that long drive in 100-degree heat, and the dehydration caused her to drink a little more. Being boxed in in the car (i.e. not mobile) only made things worse, and (as was pointed out by her dialysis nurse at yesterday's treatment), eating restaurant meals increased her sodium intake. Sodium enhances fluid retention, and the physical presence of that much fluid presses on her lungs, causing shortness of breath.

This shortness of breath happens occasionally on her "skip day." Dialysis patients are on either a Monday-Wednesday-Friday or Tuesday-Thursday-Saturday sequence. That extra day (Monday, for her) puts an extra strain on the system, and she has to be extra careful with diet and fluid intake, to minimize the quantity of harmful chemicals (for her, potassium, phosphorous, and sodium) waiting to be dialyzed.

She had a bad night Wednesday, and neither of us slept much. The only way for her to be comfortable in that condition is to be vertical, which makes sleep difficult. To make things worse, instead of her normal early-morning dialysis time, she wasn't scheduled for treatment at the Cheyenne center until 4:30pm. When we got up yesterday morning, she called the dialysis center to see if she could get an earlier time, but they were fully booked and said they'd call if a patient didn't show up. Dialysis patients occasionally take a day off for pressing business (or a stubborn refusal to yield to the disease by showing up every damn time they expect you to), so it was an unlikely scenario. Indeed, she wound up having to wait until 4:30.

Linda wasn't in pain, and being on her feet and moving around helped. In the afternoon, she went on a shopping spree at Pier 1 Imports with Helen, who took the day off from her job as the director of the Wyoming state museum. That was good for her because the shopping distracted her rather than sitting around thinking about how much longer she'd have to wait before feeling fine again.

Dialysis professionals understand that some patients are more informed than others, and know their bodies better than nurses or even doctors can. So when we arrived at Cheyenne's Fresenius center and started doing the paperwork, it took only a couple of minutes for them to acknowledge Linda's advice that she needed to have extra fluid taken off to get down to her dry weight. I knew she was in good hands, and she was. She'll blog about the center and the treatment itself, but the key thing they did was something that might not have been done in her home center. When a center has three "shifts" of patients a day, it's important to keep on schedule so that you don't have a ripple effect of making later patients wait extra time to get on. In this case, Linda was part of the day's final shift, and her nurse told her, "Why don't we just keep you in the chair until everyone else is finished?" That way, she'd get extra time and a better chance to lose that extra weight. Normally she is connected to the machine for three hours and 45 minutes (this time varies from patient to patient). Last night, they kept her on for a full four hours, and it made a big difference.

When I picked Linda up, she weighed about a half-pound under her normal dry weight, and she felt great. They had taken 4.5kg off her, or about 10 lbs. That was the extra weight she had carried around since Tuesday. I've actually over-simplified this. It isn't simply a matter of arithmetic, and during the treatment itself a key issue is blood pressure. If you take off too much weight, it can cause an unwanted drop in blood pressure. This is just one of the ways in which dialysis is a tricky business. But the folks at Fresenius did a great job with her last night, and now we're primed to head down to Boulder for the start of four days in Colorado.