Sunday, August 15, 2010

Warning: Home Dialysis Families Question Authority(!)

I'm guessing that people who do Home Dialysis are probably more self-directed, more independent, and maybe more "invested" in their care than the average patient. Or at the very least, they come with rugged CarePartners!

When Steve was planning to come home from his four-month hospitalization last month, he had very little physical mobility. He could be transfered by a lift to a wheelchair - but the act was almost entirely passive on his part, and Steve weighs 200 pounds.

In the hospital, such lifts look like industrial meat hooks which run along built-in tracks on the ceiling. You position your patient on a fabric sling, and attach the sling to the hooks overhead. The patient is "levitated" with a squeeze of the handle. The electric lifts are simple to use, and comfortable for staff and patients alike. And in this age of morbid obesity, the overhead lifts greatly simplify the care of very large patients.

The home version, however - at least the version that Medicare provides - is a sling mechanism which is hooked to a hand-operated pump. Gathering the patient up with the six sturdy straps on the same fabric sling, you attach the strap loops to the Hoyer Lift, and pump away using muscle power - not electricity. The patient is raised a little with each pump, then pivoted within range of a wheelchair. The patient is then lowered gradually into the chair.

I used the same Hoyer Lift when I was a nursing student in the early 1970's. Nothing's changed here, except that the patient is my husband with no capacity to save himself if I make a serious mistake.

The Occupational Therapist in the hospital stated emphatically,

     "You cannot operate the Hoyer Lift and transfer Steve to a wheelchair by yourself! You simply cannot do it!"

     "If it can be done safely, I MUST learn how to do it," I insisted. "In our home, we won't have a staff. We have to be able to function independently. Teach me how to do it."

The next day, a sympathetic Physical Therapist spent an hour showing me how to operate the pump Hoyer. We tried all sorts of tricks - and it was a challenge!

At home, our first Hoyer-to-wheelchair transfer was a near disaster. I called our friend George Mead, who had used the Hoyer to transfer his father when he'd had a stroke. George - with the help of friend and colleague Jane McClure - took us through hours of practice, with Jane as the "patient."

The point is this: this maneuver can be done safely at home - with adequate training and practice. NOT training me would have meant more immobility risks for Steve. And training me meant a better quality of home care.

It parallels Home Hemodialysis: it may not be for everyone. But for the appropriate patient and family, this added layer of training improves patient care and quality of life. I'm happy to report that this part of Steve's care is working seamlessly - with me and Steve's individual caregivers each operating the device solo.

But, as a family member, you have to ask and be assertive to receive this level of training. We're glad we did.
Take care. Linda Gromko, MD

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