Hi, my name's River, and I'm your hostess. I've been a peritoneal dialysis (PD) patient since January 2008, and I use Patient's Pride PD Security Bands exclusively. I knew when I discovered them on the web that this was what I was looking for.As a way of introducing the Living with Pride blog, I want to tell you a bit about my personal experience with getting used to my PD catheter and with Patient's Pride.
During my first couple of weeks with my new catheter, I didn't have anything to hold it in place with, and I felt really awkward. I didn't want it to dangle; that hurt! I didn't want to stick it in my bra; that showed up as a big lump on my bosom. I certainly didn't want to tape it in place, although that was recommended by the surgeon and my nephrologist's nurse. And once I found out I'd need to use it four times a day to do exchanges, I really didn't want to hold it in place with tape. Taping and retaping four times a day would get really old, I said to myself.
So I started scouring the web for something to use instead of tape. I found a couple of adjustable belts, but they looked fairly thick, not comfortable, and I wasn't at all sure they'd be easy to use. Once I got to the PD clinic for my first appointment to flush out my catheter and have them put on my first transfer set ("it's going to be HOW MUCH LONGER and have WHAT on the end??"), I saw a model torso with a couple of different adjustable belts on it, and yes, they were narrow, looked uncomfortable against my very sensitive skin, and were pretty thick.
Then I found the website for Patient's Pride. I learned that the company co-founder, Sheila Shaw, had herself been a PD patient for five years, and had gone through much of the same experiences I had in being a woman and trying to figure out what one did with this thing when it wasn't in use. She designed something called a PD Security Band for herself. She made it to her measurements, and it accomplished a number of important things: it kept her exit site covered so it stayed clean and protected; it kept her catheter from moving or being pulled; it felt comfortable; and it kept her catheter against her body so that it couldn't really be seen under clothes.
I know self-image is as important to men as it is to women, albeit in different ways. But nobody I know wants to go out, dressed to the nines, and have people stare at the transfer set and tubing prominent under their clothing. I sure didn't. New Year's Eve was coming up, and we were planning to go to a party.
I ordered my bands on the phone. A very nice, knowledgeable, and patient woman named Peggi walked me through the self-measuring process, and assured me that the first bands to try on would be there in just a few days. Meanwhile, I grabbed a 3" Ace bandage and started wrapping that around my waist to hold the catheter snug against my abdomen. It was better than nothing, and it was certainly better than taping it in place. The Ace bandage was far from comfortable, and it did tend to keep either slipping or binding, but having tried taping my catheter in place and being unable to stand it for long, I found the Ace bandage preferable.
On December 30th, my first two PD Security Bands arrived in the mail. I was relieved to be able to take off that Ace bandage, and even more relieved to be able to roll it back up and put it away for good. The bands, which were custom-made to my measurements, fit perfectly, except they did tend to roll or bunch up a little bit, especially in the back.
(I want to say right here that this is not the case with most people's new bands. Most people don't have them bunch or roll at all. However, I'm built curvy - very, very curvy - and with my hips, there was no getting around the rolling if they were to fit properly. Sheila and I brainstormed a number of ways to deal with it and finally settled on "it's not uncomfortable, just a bit of a nuisance" and left it alone. I wore those bands for a year and a half.)
But it was New Year's Eve the next night, and we were going to a dressy party. I have a blue velvet dress with a Battenburg lace top and a sweetheart neckline that I love; it's designed to really show off my waistline, too, and I really did not want to have a catheter bulge showing and ruining the look of my best dress. The Classic band that Patient's Pride had sent did the trick. It smoothed out the look of the catheter so that no one could see the outline of the tubing at all, and it minimized the bulky end of the transfer set better than anything else had, including the Ace bandage. Moreover, it was comfortable, and the fabric was thin enough that it didn't show under clothes while being sturdy enough to stand up to repeated removal and replacement of my catheter.
I had ordered a total of seven bands, one for each day of the week, since one is supposed to change them every day just like underwear. That way I knew I'd always have clean ones available to me without having to do hand laundry every day or two. While I was waiting for the other five, since I ended up keeping the first two try-on ones that Patient's Pride sent, I did do hand laundry every day; I wanted clean bands, and I wasn't about to go back to the Ace bandage now that I'd tried the Security Bands. The other five arrived in short order, and I've never regretted that I chose these bands. Even the dialysis nurses at my PD clinic were impressed with the bands, as well as with Sheila's fabulous book, Five Simple Steps to Doing Peritoneal Dialysis Successfully (but that's a subject for another post).
The only person who could design something like this is someone who had a catheter herself, and indeed, that was just the case. Sheila didn't stop at just making them for herself, however; she decided to share her design with the rest of the PD community and with people with G-tubes. In fact, "sharing what you've learned in order to help others" is one of the steps she lists in her Five Simple Steps... and she lives by that, every day.
I've got a new band on now. PD puts weight on some people, though by no means all, and I'm one of them; I finally had to order new ones. This time, Sheila wanted to try an innovation with me, and sent me one of the Summer Light bands that was long in the front and tapered up to a much smaller width of fabric in the back. She thought this might stop the rolling, and it has! Much to my delight, this one doesn't roll at all unless I move in some very unusual ways.
Patient's Pride will work with you to ensure that the bands fit you the way they are supposed to. That's why they custom-make them for each person who orders them, because no two people are alike. That's why all the measurements. That's why you have to order them over the phone rather than online, so they can tell you exactly what measurements are needed, how to take them, and what they're recommending.
There will be more in other posts, later on, about patient experiences, about living with PD, about what health professionals have to say, and the wisdom that Sheila, Peggi, and others have to share after years of helping PD patients and G-tube users live active, fulfilling lives.
