Every day offers more understanding

SURVIVAL TIP: Understand that your health can interfere with your lifestyle and your self-image. Your clothes and your shape do not define you. Your character and personality leave a permanent impression. Weight, wrinkles and thinning hair usually do not.

Early 2007

After learning the manual PD dialysis method, I could leave home for a few hours at a time. Amy, my nurse, was concerned that the doctors were rushing the PD dialysis when my incision was not completely healed. The sutures were still in place, yet I was filling my abdomen with bags of fluid. Seepage was inevitable until the incision healed. As Amy suggested, we started too soon, and dialysis fluid leaked out of the front of my abdomen. I used a panty liner in front of my stomach to try to absorb the seeping, but I realized the leak was serious as I stood in front of a group of business owners trying to carry-on my business responsibilities. The dialyzate (dialysis fluid) soiled the front of my expensive, new cream-colored business slacks as it flowed from my abdomen. The color was clear, but I know several people wondered what was happening, that I wet the front of my pants. No one said anything, but I was absolutely humiliated. I am sure I blushed for the duration of the meeting, which I oversaw. I still blame the doctors who diagnosed the need for dialysis too late, required dialysis in the groin several times, rushed the PD dialysis, and caused unnecessary difficulty. This transition to dialysis was more difficult than it needed to be, but with love and prayers I got through it. Finally, I began to recover and feel more energy. And I hoped for good news on my aunt’s kidney donation.

What I worried about, but didn’t fully consider, was the impact PD would have on my self-image. peritoneal dialysis exit siteThe catheter is placed in the stomach, to the right below my navel. It is not sexy. And it was an incredible hit to my body image. I was going to have to buy pants that were bigger in the waist, and my tummy was lopsided. It looked obvious to me that something was amiss. I hated looking in the mirror–or down at my midsection. Fortunately, I guess, I never had a bikini-body. So having a 12-15-inch catheter that is rolled and taped to my abdomen wasn’t a blow to me like it would be for a slender woman. And it was temporary. But during the months I had it, I had a much bigger belly to cover. Sometimes I felt as if I looked pregnant. After getting on a normal dialysis schedule at night using the PD machine, I regained more energy. But it was good that Jeff left town on a lengthy Army training assignment a few weeks into January. I felt like this unnatural extension, this plastic tubing, drew attention. I wanted energy and to look like a healthy young woman, but instead I had a bigger tummy and could not take a quick shower. The catheter exit site must be cleaned every day. It’s a clean incision, but I’m not sure I ever got accustomed to the plastic tube extending from my body. I rolled the 10-12-inch tube into a circle and taped it with an X to secure it when I was not dializing.

Any shower required that I thoroughly cover the catheter in plastic and waterproof tape. Baths and swims in a pool or lake were off limits. Submersion in water is a bacterial nightmare. After all of that additional effort drained my energy. So I sat on the tub to dry my hair. Whew! And that took as much exertion as a day’s work. I kept telling myself that this was the best option and that I was fortunate Jeff loved me despite the awkward, disgusting new appendage. He never judged me or looked disgusted.

And with PD, I had my days free, and my energy grew. And they say you can travel with the machine, So visit Tuesday, to see about my trip to Atlanta!

If you or someone you care about is facing dialysis, please share your experiences and concerns. This is a forum for learning and inspiration. Please share your stories and questions. What were your experiences and challenges with peritoneal dialysis?

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About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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