#NephMadness 2019: Patient Perspective on Volume Management in Dialysis

Martha Jane Marner 
Martha Jane Marner is retired and happy to sleep late on Monday mornings! She also writes blogs about fun times with children and friends.

My medical history is long and complicated. It began with a diagnosis of cancer, followed by a second case seven years later. Then came diabetes, sleep apnea, heart stent placement, heart attacks, more stent placements, toe amputations, then congestive heart failure. I felt as though I spent most of my time in hospitals and doctors’ offices. One day, my primary care physician took lab tests and announced to me, “Your kidney function is not good. I am sending you to a kidney specialist.” I was shocked at this statement and had no clue that my kidneys were not working properly. I had no pain to alert me and was still urinating and had not noticed any decline in my urine output.  

My first appointment with the nephrologist was directed to the diagnosis. I know they told me about how my kidneys were failing and even drew me a picture of a fistula and explained how it made dialysis possible to replace the work of the kidneys. I attended information classes on dialysis, fistulas, and kidney transplantation. I heard it all, and when the diagnosis of end-stage kidney disease (ESKD) with the need for dialysis treatment was eventually prescribed for me, I mentally blocked it out. After all, I still urinated.

I did not understand dialysis. I didn’t want it. I convinced myself I didn’t need it. Eventually, I was admitted to the ICU of my hospital and my nephrologist told me, “If you don’t have dialysis, you will die.” The decision was made then and there. I began hemodialysis right in the hospital. That was 5 months ago.

Dialysis saved my life. Weeks later, while at home, I could feel a change in my body. I felt better. I was stronger, more alert. I was now on hemodialysis and I began to learn not only about the kidneys and their function, but also about dialysis and how it replaces the function of the kidneys by removing toxins from the blood, then returns clean blood back into the body. Education had begun and has made all the difference.  

Because I have diabetes, diet adjustments were already a part of my life, so the changes to the food allowed or eliminated on a renal diet was an additional alteration that I had to make. Diets are not easy, but just as in other aspects of life, moderation is the basis of success. The nutritionist at the dialysis center went online and printed out an information sheet listing all of the different diet recommendations I needed to attend to. I keep the renal diet information sheet under a magnet on my refrigerator door and use it every time I shop for groceries.

I learned that potassium and phosphate should be limited and thus it is important to make changes to the diet. Potatoes and sodas were the two choices on the food list that took the most effort for me. I have learned to peel and soak potatoes to remove some potassium. This little task is worth the time to still have mashed potatoes. I eliminated Diet Coke because of phosphate, except….confession time: I have a moderate amount on some occasions.

Fluid management, for me, was more confusing than difficult. Before I began attending a dialysis center for treatment I was given a mixture of information. One source said, “Drink all you want because dialysis takes it off.” Another source said, “Don’t drink any fluid.” (What!) I was told amounts that ranged from 16 oz to 64 oz daily. I didn’t know which to do. In dialysis education, I was told that 32 oz is now recommended by the National Kidney Foundation (NKF).

This is what I eventually came up with: I measure out 32 oz of water each morning and drink from that supply. My cup of coffee at breakfast comes out of that 32 oz. I also remove from that set aside amount each time I have something that amounts to liquid. I was taught that “if it melts, it is liquid” so when I have a popsicle, I pour off some water from my container. I have found that 32 oz is a sufficient amount for me each day.

My first weigh-in showed my beginning weight, called wet weight. Now I am weighed each day upon arrival at the dialysis center. In the beginning, the nurses removed about three to four kg each treatment. On two occasions I had slight leg cramps, so less fluid was removed on those days. At home one night, I became short of breath and went to the hospital where I was given a dialysis session to remove extra fluid. Currently, the dialysis team removes two or less kg each visit. Also, the nurses at the dialysis center checks for any swelling in the extremities and keeps a check on my blood pressure before, during, and after treatment so that it is at an accepted level before leaving for the day. My goal weight (called dry weight) has been determined by the physician at the dialysis center, and I now stay at or very near that weight.

Since starting dialysis five months ago, my labs have been very good, almost perfect. For this I thank the team at my dialysis center: my doctor, the nurses, the techs, the nutritionist, and the lady who brings me a cup of ice! All of them have taught me that there is a reason for each point in the dialysis treatment: weighing daily, keeping to the diet, fluid management, not missing treatment appointments, etc. I have learned from them all.

The hardest part of dialysis for me is sitting in the chair for 3 ½ hours. But I watch TV, read, or get caught up on Facebook! So, do not do as I did in the beginning and deny what is happening in your body. No one wants their kidneys to fail, but when it happens there are skilled people to help you lead a good life. It is happening for me, it can happen for you.

– Guest Post written by Martha Jane Marner 

 

As with all content on the AJKD Blog, the opinions expressed are those of the author of each post, and are not necessarily shared or endorsed by the AJKD Blog, AJKD, the National Kidney Foundation, Elsevier, or any other entity unless explicitly stated.

Competitors for the Volume Assessment Region

Old School vs New School

Dry on Dialysis vs Wet on Dialysis

Submit your picks! | NephMadness 2019 | #NephMadness @NephMadness | #VolumeRegion

 

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