Oley Foundation

Infusing During the Day - An alternative worth considering.

Nancy de Vries, HPN Consumer

I have been a TPN patient for 16 years. Until recently, I have always infused my solutions during the night while I was sleeping. I assumed this would make my life as normal as possible and keep the TPN patient condition as private as possible.

This past summer I attended a storytelling festival, sharing a room with a friend and fellow storyteller. She is a light sleeper and after a couple of nights she asked me if I knew how many times I was up each night to urinate. My response was two or three times. "No," she informed me, "You are up no less than seven times and as many as 10." She went on to say, "You, my friend, are suffering from sleep depravation. As long as I have known you, you have had dark circles under your eyes."

It was then that I considered an alternative - to infuse during the day. I discovered that I could cut my infusion time down from seven or eight hours, to five hours. I get hooked up by 7:00 or 8:00 o'clock in the morning and am done about noon.

The difference in how I feel is tremendous. I now sleep through the night, getting up only once or twice as most non-TPN patients do. I sleep so much better, which gives me more energy and I no longer have those dark circles under my eyes. I also have been digesting food better due to overall better health from a good night's sleep.

I have found the backpacks supplied by pump manufacturers to be overkill in their size and features. I didn't want one any larger or with any more features than was absolutely necessary. So I bought a small black leather pack at a local discount store and cut a couple holes in it for the tubing to pass through.

The response to my often present backpack has been minimal. I teach art part-time to first through eighth graders. When I explained the situation to my students, I found they were most interested and understanding. I feel it is a step in the right direction for these youngsters to learn about and accept people with all kinds of disabilities. I have even been in a situation where I have had to wear the pump/backpack during a storytelling presentation. Again, when I explained it to my audience, they responded very warmly. In fact several members of the group mentioned afterwards how it touched their lives, giving them courage to face their own personal problems.

If you would like to switch your infusion time you should probably discuss it with your physician and/or health care provider first. I have found certain limits in that I can't reduce the rate to less than five hours due to cramping in my hands and legs. I also had to shop for a bit to find just the right backpack. If you have any questions about my experiences, don't hesitate to call me at (616) 846-7335.