Winter Cold Snap Highlights our Family's Vulnerability

We are such weather wimps in Seattle. Our climate here is so moderate that we rarely endure snow or bitter cold. But this week, snow and tempertures in the teens have frozen our hilly streets, making the side streets impassable. Schools have closed, and so has my medical clinic.

As soon as the snow started coming down in earnest, I began to strategize about Steve's dialysis. He couldn't miss treatments, of course. And our driveway is steep enough that we really cannot drive him out of here. Moreover, he requires a cabulance or Access bus for transportation because of his wheelchair.

So, we just hunkered down and took care of dialysis at home. We haven't been able to get out in a couple of days - and we really haven't needed to.

But it has highlighted for me the sense of true vulnerability we have as a family with a disabled person who requires ongoing life-sustaining treatments.

So what to do?

For the moment, we'll just keep on doing what we're doing. But I'll start stocking our pantry a little differently, planning ahead for more meals on hand. I think we're OK in the emergency preparedness area, but I'll firm this up a bit. Bottled water, extra blankets, flashlights are not frills. Particularly if the power went out again.

And I'll breathe a little easier when tomorrow's Home Hemodialysis treatment is done, and "in the bank."

Take care,
Linda Gromko, MD

Power Failure Provides a Photo-Op

Just before I was planning to start Steve's dialysis today, we had a power failure. Several trees had gone down, bringing power lines with them. This has obvious meaning in a "dialysis home."

I was moving Steve back to his hospital bed, when it dawned on me that I couldn't lower the hospital bed - no power!

So, we resorted to the Hoyer, and moved him for the first time to one of our upholstered living room chairs. Sitting in a "real" chair, Steve seemed more like himself. I snapped a photo, below, as Steve chatted with Tim and me.

Welcome back, Steve. You're looking better every day.

Linda Gromko, MD

Steve's Next Chapter: Peritoneal Dialysis

When I first really learned anything about "Renal Replacement Therapy," the conference speaker urged us to think of kidney transplant, Hemodialysis, and Peritoneal Dialysis as somewhat interchangeable. Of course, the three modalities are not the same; transplant is by far the best in patients who qualify and can find a kidney.

Steve is running out of fistula access points. He has had two angioplasties of his last fistula - one in August, and one about a week ago. We're back up to running dialysis at a blood pump speed of 400 ml/minute. But we both know it's only a matter of time before that angioplasty runs its course and the fistula stenoses (narrows) once again.

The greater problems are these:

• Steve sustained a median nerve injury at the site of his last fistula placement, rendering his left hand only marginally functional, and nobody's eager to try that site again.
• Steve has NO central line access points available; all potential sites are narrowed from earlier central lines.

That could leave Steve - in a pinch - with a groin catheter. Again, nobody's first choice.

So these realities have prompted Steve's nephrologist, Dr. Smiley Thakur, to consider Peritoneal Dialysis. Steve's body mass is smaller now, and it could work - at least as an interim modality.

In Hemodialysis, the filter that performs the kidney function is external to the patient and looks like a long, cylindrical oil filter. In Peritoneal Dialysis, the filter is the patient's own peritoneal membrane - the membrane that lines the abdominal organs.

In "PD," no blood is exchanged. The dilysate runs into the patients abdomen via a catheter. Dialysate fluid mingles with the vascular peritoneal membrane where molecules meander back and forth, allowing for excretion of the patient's waste. After this "dwell" period where the dialysate fluid sits in the abdominal cavity, the fluid is allowed to run out and is replaced by fresh dialysate fluid to start the process once again. Ingenious!

PD is done daily. It can be done through the day as a number of individual "fills and dwells" - and it can be done automatically overnight. It's great for travel. It's technically easier than Hemodialysis, and requires less training.

We're now into the logistics of setting up the catheter placement, getting training, and trying the new modality in December. The ease of the treatments, although they are required daily, is very appealing to both of us.

So Steve and I move to a new chapter, tackling our challenges as we have in the past. With a little grumbling, a lot of irreverent humor, and boatloads of gratitude to have these modalities available. After all, he gets to live.

Take care,
Linda Gromko, MD

Kidneys and Water Collide in "Rowing Through the Winter"

Please visit my Rowing Blog: http://www.rowingthroughthewinter.blogspot.com/ today for an update on Steve and his fistula dilemma.

Take care,
Linda Gromko, MD

All Velcro'd In...

Steve has done two stints on his new Standing Table - for ten to twenty minutes at a time. The first stint was exhausting, albeit triumphant. Blood pressure must equilibrate; the legs take more load. But it's all necessary if Steve is ever to progress to walking.

The above picture shows Steve "standing," not on his own power, of course. The bands around his chest, hips, and thighs are made of sturdy fabric, secured with Velcro.

But I think it's easy to see in Steve's face that verticality makes a difference! It certainly gives us hope.

And even though the steps are baby-steps at times, they are clearly steps in the right direction. This from a man who by all rights should have been dead many incidents ago!

Thanks again to the Village that provided the gift of the Standing Table. It's provided an amazing boost to Steve and his team.

Take care,
Linda Gromko, MD