Thursday, January 7, 2010

"What Now?" Starting Home Dialysis Reminds me of Bringing a New Baby Home!

Thirty-three years ago, I gave birth to my son, Tim. I remember holding Tim in my lap that monumental morning. He looked up at me with those enormous blue eyes, seeming to expect that I'd know what to do next. I was twenty-five, and this was before I went to medical school. But I did have a Master of Nursing degree, and I'd worked with many new mothers as an OB nurse. Plus, I'd taken all the Lamaze classes, and had read the "appropriate books." We had had a couple of baby showers, and had received every basic supply you could possibly need - plus a few cute little things that had no substantive function whatsoever.

But in taking baby Tim home, I experienced a learning curve as steep as any.I have ever tackled. Quite frankly, I was terrified! How would I tend to this baby human with infinite needs? How could those eighteen-year-old mothers look so calm?

At the time, there was a little book written for post-partum mothers that was aptly titled, "What Now?" And I still remember devouring that book, searching every page for guidance, foraging for a set of skills to conquer responsibilities I'd never imagined.

Bringing dialysis home is similar to bringing a new baby home...

When Steve and I brought our precious cargo home two years ago - in this case, the NxStage machine - we felt a bit overwhelmed, too. Certainly, we had been properly trained by a group of thorough and compassionate nurses. We had read all the materials. But it was still a lot to absorb.

Then, there were the storage issues: the sixty boxes of dialysate fluid delivered to our door would strain anyone's storage capacity. We were awkward; we lacked solutions. And we lacked confidence.

 Nobody gave us a Home Dialysis shower(!)...

Now that we are "veterans," and our NxStage machine has had its second birthday, we think it's time to offer some important observations: Just as with bringing a new baby home, beginning Home Dialysis home brings big changes. Is it manageable? Absolutely. Is it worth it? Without question.

What changes might you expect?
  • You may experience a time of adjustment to the process
  • You find that you can experience problems (signaled by alarms during your runs) - and that you can troubleshoot them correctly
  • You may experience a shuffling of family roles, and this may re-adjust from time to time
  • You may find that some friends and family are more comfortable than others with dialysis; some will be completely okay and keep you company during the runs - and others may not
  • You may find that you have more demands on your time.
When Steve and I first started doing his Home Dialysis, we learned that there were few "outsiders" who even understood what dialysis is. We learned that even doctors and nurses rarely understood that hemodialysis could be done at home at all!

And, not surprisingly, we found that nobody understood the "ins and outs" of Home Dialysis more clearly than others who did Home Dialysis themselves.

So going back to the childbirth analogy, what's available to help people as they start Home Dialysis?
  • Certainly, there is excellent Home Training, such as the instruction we received at the Northwest Kidney Centers.
  • Designer Jane McClure and I have written a book "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor." This book helps you design and organize your Home Dialysis Space, and deals with the logistics of storage, travel, and caregiver burnout. (http://www.arrange2live.org/).
  • Blogs help. Check out Bill Peckham's site, "Dialysis from the Sharp End of the Needle." You'll find all sorts of blogs listed on the DSEN Blog Report; something will probably match what you are looking for!
  • Organizations and on-line support: check out Renal Support Network and Home Dialysis Central for fur further support.
  • "Kidney Events," such as those sponsored by the Renal Support Network or the Northwest Kidney Centers are useful as well.
Will we ever see "Dialysis Showers" where friends and family gather to provide some of the non-medical provisions that will make the process easier? Support groups or Home Dialysis "doulas?" Time will tell.

But if you know someone who is just beginning Home Dialysis, send them an e-mail greeting or give them a call. Better yet, send them a coffee or grocery giftcard with your support - and congratulations on their new skills. Every transition is easier with support from people who care.

Take care. Linda Gromko, MD

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