Physical Therapy is Teaching Steve "Bed Skills"

OMG - What should we think about this? This is our Medicare dollar at work!

Well, I'm delighted that Steve is working on his "Bed Skills!" He's making progress!

Here's the story: when Steve came home from the hospital in 7/2010, he had to be moved from bed to wheelchair via Hoyer lift. He couldn't transfer himself in any way. He really couldn't sit up by himself. He couldn't turn over, or scoot up in bed. He was fully disabled with "Critical Illness Myopathy," - a little known and less understood phenomenon which impacts people after severe illnesses. It hits people who've been on a ventilator for a while, those who've had a major surgery, those with sepsis, those with serious cardiac or renal disease. Check all of the above.

Steve wasn't paralyzed; just exceedingly week. And it wasn't a matter of volition; his body just couldn't do the things he asked.

Steve was further impacted by a fistula surgery which compromised the blood flow to his hand and resulted in a median nerve injury. His left hand became practically useless.

Our bedroom is functional - but it is really more like a dorm room. Steve's in a hospital bed, and I'm in a daybed. This is very useful for the nursing tasks we must perform many times a day.

While I know this sounds like an utter luxury given the overall scope of troubles in the world, I'd really like to sleep with my husband. And two big people in a single hospital bed isn't very comfortable.

When Steve acquires "bed skills," i.e. scooting, rolling over (like a four-month-old does), we can bring in the big bed from the garage and sleep like a couple.

We haven't done this since Steve went into the hospital on March 2 - just about a year ago. A year ago, when all of our lives sommersaulted into such chaos and uncertainty. When Steve's dying would have been the assumed and logical outcome of his continuing series of nightmares.

But Steve didn't die. He's coming along, little by little. And while I've been told that "you get what you're going to get back after a year of Critical Illness Myopathy," I've got my money on him yet.

In spite of everything, Steve's mind is still exceptionally sharp - probably a mixed blessing. My son Tim - who serves as one of Steve's caregivers - bought a new Trivial Pursuit game. And Steve can beat us all!

But then, Steve could have lost a few hundred thousand neurons in all his events and still have plenty to spare! Amazing.

Take care,
Linda Gromko, MD

Peritoneal Dialysis Brings Steve Some Benefits; Will They Last?

Steve had a rocky start with Peritoneal Dialysis - with worrisome volume overload and wide blood sugar swings.

But now that we've settled into it a bit and ironed out a few math problems, PD looks very encouraging.

Here's what we're noticing:

1. It's so easy, compared to Home Hemodialysis. Particularly compared to Home Hemodialysis with chronically challenging fistula access! (All those stenoses requiring periodic angioplasties!)

2. It's done daily, which has to mimic actual kidney function more closely.

3. Steve feels better! This week, he started Outpatient PT and OT, so this new energy level will be much-needed.

4. Steve's appetite has returned, and interestingly enough, food has begun to taste better. On hemodialysis, Steve said that chicken tasted like cardboard. He'd say he'd eat "from memory." Now, he says that food tastes the way it's supposed to taste.

It may be premature, but we are very hopeful that Peritoneal Dialysis will continue to encourage. We are glad to have moved from Hemodialysis to PD - and not the reverse! This technology is much more user-friendly, and conducive to CarePartner sleep!

Since our "filter" is now a living membrane, i.e. Steve's peritoneum, it's not as reliable as a manufactured dialysis filter. Will dialysis via PD provide adequate dialysis?

Will he run into later complications or peritonitis?

Most critically, will PD buy us enough time to potentially gain Steve enough rehab - and give him enough mobility to become a kidney transplant candidate once again?

Take care,
Linda Gromko, MD

The Kidney Community Celebrates the Life of Ted Lomax

This week I received an email from Gloria Lomax. Her beloved husband of nearly 58 years had "come home to go HOME." With family surrounding him, Ted Lomax passed away at the family home on February 2, 2011.

I knew Ted only vicariously, through my dear "penpal," Gloria. Through his obituary, I learned that Ted had helped raise his three siblings after his father's death when Ted was only nine. He worked for seven summers at Mount Rainier National Park during high school and college, and served in the US Army Air Corp. He was trained as an aeronautical engineer, earning UW bachelors and masters degrees. He was to meet his future wife Gloria at the UW, where Gloria majored in home economics. Ted Lomax worked at the Boeing Company as a structural loads engineer for 40 years. He authored a textbook "to bridge the gap beween historical structural loads applications and modern design." After retirement, he worked as a consultant for Aviation Partners until April 2010. Deeply committed to his faith, Ted was a leader in his church community as well.

What the obituary didn't mention was that Ted's very full life had been complicated by kidney failure and the need for kidney dialysis, beginning in October 2000. The couple trained in Home Dialysis in July 2002, and did home treatments until Ted's recent hip fracture prompted his move to a Skilled Nursing Facility.

Steve and I had the honor of meeting Gloria Lomax at the Northwest Kidney Centers' Breakfast of Hope in May 2009. Steve was sporting a "wound vac," an odd little device that helped him heal an enormous wound left by a failed kidney transplant three months before. We were back on Home Dialysis once again, and desperate for any encouragement the Breakfast of Hope might provide.

So we met this elegant, graceful woman in her late seventies who had commandeered Home Dialysis for years - getting only a little assistance from a granddaughter who'd stop by to hang the dialysate bags each day.

I was so inspired by this woman who took the challenges of Home Dialysis in stride - calmly doing it because she could, and because it was the best thing for Ted.

I especially appreciated Gloria's descriptions of times when Medic One had to be called. (It's a singular moment for all parties when the medics come. For all their skill and expertise, Home Dialysis can make even the most seasoned firefighter stop in his/her tracks!) I can just see Gloria on the phone with the Northwest Kidney Centers RN, delivering Ted's blood back to him while the Medic One crew administered oxygen. What courage Gloria had through all of this!

Since meeting Gloria at the Breakfast of Hope in 2009, Steve has been on his own medical rollercoaster, with multiple surgeries and multiple complications. I updated friends on Steve's condition through this blog as well as more personal emails to his more intimate circle of pals.

Gloria was on our email list as Steve's medical updates were disseminated. And it was Gloria who consistently spoke to me in the compassionate language of one who truly, truly understands.

She appreciated - as I did - "the comfortable time in between crises." Who else could know this so personally?

In our continuing correspondence, Gloria shared with me that Ted was declining. And when she wrote that he had passed, she expressed her relief that her beloved no longer suffers. Her faith is strong; the support of friends and family is sturdy.

But I ache at her loss as deeply as I respect her strength and wisdom.

The Memorial Service for Ted Lomax will be held Sunday, February 6 at 3:00 pm at John Knox Presbyterian Church in Normandy Park. In lieu of flowers, memorial gifts may be designated to John Knox Presbyterian Church (109 SW Normandy Road; Seattle, WA 98166) or to The Northwest Kidney Centers (PO Box 3035; Seattle, WA 98114).

Take care,
Linda Gromko, MD
Addendum: Read "Caregiver Profile: Mrs. Gloria Lomax" on this blog, November 17, 2009.