Monday, November 9, 2009

Arranging Your Life When Dialysis Comes Home: The Underwear Factor

My husband Steve started Home Hemodialysis a little over two years ago. We welcomed the elegant technology, and the convenience of dialyzing on our schedule, not that of the Kidney Center. While we have had our ups and downs-mostly with fistula issues-there is no question that Steve favors home treatments over in-Center care.

As with many households, the equipment and supplies needed for Home Dialysis seemed to expand to fill every bit of available space. Our home was practically swallowed up by medical paraphernalia. Our bedroom looked like an ICU; our fourteen-year-old was skittish about bringing her friends around. It seemed that our lives had become totally defined by dialysis; our lives were tethered to illness.

In the process of trying to sell our home, Steve and I hired an expert in home "staging" to camouflage the dialysis equipment in preparation for our Open House. Interior Designer Jane McClure created new storage, screened away medical equipment while keeping it still conveniently at hand, and generally made the home look far more appealing.

Jane's simple and affordable room re-do brought us part of our lives back! She and I were so impressed by the effect of good design on a home consumed by medical care that we wrote a book on the subject:. "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor'" was released at the Renal Support Network Patient Lifestyle Meeting on October 17. It's a practical book, with plenty of tricks of the designer's trade--and nothing that will break the bank. Besides, we've included chapters devoted to the unsung hero of Home Dialysis: the caregiver. We discuss caregiver burnout, how to recognize it, and how to prevent it.

Why the "Underwear Factor?" Steve's nephrologist, Dr. Smiley Thakur, used to say that Home Dialysis gave you the comfort of dialyzing on your own time, on your own terms, and in the comfort of your underwear! Our book is available for $15.00 plus shipping and handling on our website, http://www.arrange2live.org/, and through Amazon.com.

I'd like to know how Home Dialysis has changed your living space. Feel free to write in your comments and challenges; maybe we can stir up some answers.
Take care. Linda Gromko, MD

3 comments:

  1. Hi I just ordered your book. My husband & I have been doing home hemo on me since this past July. It's so much better than in-center. I feel better, have more energy & people say the sparkle is back in my eyes LOL We converted an extra bedroom into the dialysis room & it's working out well.
    We just got back to UT after an 8 day trip home to KY. We took the NxStage machine with us & dialyzed at a friend's house (with 15 people watching LOL) & in the hotel room. If anyone needa any tips about traveling with the machine, feel free to ask me!
    peace,
    DJ

    ReplyDelete
  2. DJ, Thank you for your comment. Steve and I flew with our NxStage Machine to a conference in San Diego. My only problem was that I had forgotten to bring an extra wasteline to use as an extension. We ended up running the effluent into two waterproof wastebaskets, and emptying them as we went along--sort of a bucket brigade. Our friend who was watching suggested we simply run the wasteline over the balcony of the Marriott, and added "It wouldn't be the first time Steve Williams peed off the balcony of a Marriott Hotel!" That was more than I needed to know about my relatively new husband! I sincerely hope you like our book. What is your favorite travel tip? Linda

    ReplyDelete
  3. Hi Linda, my favorite tip is to travel in a wheelchair. I am on oxygen & had trouble racing through airports to find our gate. With a wheelchair, there was someone waiting when I got off the plane & wheeled me to the next gate.
    We got our seats upgraded so I'd have more leg room. The airlines (Delta) worked out really well.
    peace,
    DJ

    ReplyDelete