Saturday, September 25, 2010

Rowing Through the Winter is a Lesson in Balance

I love rowing: sculling, sweep rowing. I'm not good at it; in fact, I'm headed on a vertical pitch to mediocrity. But I love it. It's great exercise. It's being out on the water. It's seeing the dynamic working waterfront - where crab fishermen prepare their ships to seek that "Deadliest Catch." Watching the birds organize themselves for their annual journey south, watching salmon jumping, and catching a glimpse of a seal now and then. It's lasting friendships with other rowers, pre-Title IX women finally claiming their own athleticism. Rowing is noticing traffic on freeways and bridges all around - all the while knowing that you're in a tiny boat, tucked away from the fray.

While onlookers perceive rowing to be an upper body sport, it's really all about legs. Legs and balance!

Rich with metaphors, rowing allows me the opportunity to examine balance in my own life. This winter, I'll row regularly with a friend or two, as we did several years ago. Even wipng the ice from our boats, winter rowing was a triumphant experience. Buoyed by a sense of moral superiority, we'd return to our boathouse knowing we'd done it once again!

For me, rowing affords an opportunity for self-care: physical fitness, fun, and obligatory meditation for my busy mind.

Join me at as I learn something about much-needed Balance.

Take care. Linda Gromko, MD

Friday, September 17, 2010

Anniversay Phenomenon Strikes Again

Anniversary Phenomenon is the term used for that vague, in-the-background sense that something is wrong - correlating with a significant event that occurred in the past.

During each of the three Septembers after my husband's rapid fall into kidney failure in 2007, I have experienced "Anniversary Phenomenon." For me, it is a pit-of-the-stomach sense of personal vulnerability. The seasonal cues, the sky, the ambient temperature all scream "Your life can change in a minute to something far different than you'd ever expected."

So what have we learned from this experience so far?

  • We've learned that End Stage Renal Disease impacts an individual in a global fashion. It isn't a one-organ disease. It impacts the heart, the blood, the bones, and the very lifespan of an individual.
  • We've learned that dialysis - particularly Home Dialysis - is a lifeline that prolongs life and maximizes the quality of life for the patient AND family.
  • We've learned that transplant is the ultimate therapy, but that there are too few kidneys available.
We've learned that love is medicine, the only medicine that we can bring to the equation.

We've learned that resilience is a weapon that cannot be underestimated. Someday, I believe there will be a chemical assay for resilience; it will become a standard pre-op lab test!

We've learned that there are good people in health care: honest, straitforward people that want the best for you. And there are those that don't really care.

We've learned that advocacy starts at home - with patient and CarePartner, and branches out to include many support people, family members, and organizations. We're learned that no one understands like someone who has been through a similar journey.

So as Fall comes, I get reflective - philosophical. I'll never forget the first few days of Steve's critical diagnosis. It was a benchmark occasion, one that neither of us would have signed up for. But all in all, I think we've done as well as a couple could have done given our circumstances.. Have we had problems? The medical complications have been legion! Would I ever go back and do something different?

No, never. You find a soulmate, and the rest follows.
Take care,
Linda Gromko, MD

Sunday, September 5, 2010

Access Bus Offers Opportunity, but Deflates the Spirit

When Steve goes to a doctor's appointment, he must travel in his wheelchair. We transport him from bed to wheelchair via Hoyer Lift. Then, to go anywhere, he must travel in a wheelchair van - specially equipped to secure the wheelchair to the floor and to the sides of the van. So far, he has traveled in commercial vans - with each one-way trip costing $35 out of pocket.

The Kidney Center suggested we look into Access Bus - which would cost only $1 per trip, and allow a caregiver to travel at no charge. Access is a Seattle Metro bus service for the disabled. Essentially, as long as you qualify, a truncated Access Bus comes to your home, picks you up, and delivers you to your destination. Plus, the busses are equipped with lifts and tracks in the floor to clamp a wheelchair safely into place.

To initiate Access Bus service, we had to take Steve to Harborview Medical Center for an evaluation. I assumed it was to prove he was disabled "enough," but the staff expained that it was also to ensure that a person could ride the bus safely.

So yesterday, we had the Access Bus evaluation. At no charge, the Access Bus transported us to and from Harborview. The first driver was very kind and professional, and even a little early. We made one stop on the way to Harborview - to pick up a notably slender woman who walked to the bus with the aid of a cane. She looked so fragile; a stiff gust would have derailed her little body. The driver carefully assisted her on board, and helped her step off the bus at her First Hill destination.

Steve became nauseated during the bumpy ride, and the driver pulled over to find a plastic bag for him just in case. I noticed a small first aid kit and "Bodily Fluids Clean-up" kit duct-taped to the inside of the bus.

At Harborview, the evaluation was brief. Steve's disabilities are painfully obvious. The therapist measured and weighed Steve in the wheelchair. He was well under the 600 pound weight limit, but it certainly seemed to us that that information would have been available without the physical visit.

The return trip was treacherous. Leaving a full hour after the scheduled time, we made stops for two other passengers before arriving home an hour-and-a-half later. The entire evaluation journey - start to finish - took five hours!

The duration is significant, as Steve cannot sit in the wheelchair that long without considerable tailbone pain. Moreover, the return driver was befuddled - ignoring not only the GPS system, but also directions from passengers. As a result, the journey consisted of a serpentine Twilight Zone ride of twists and turns, punctuated by jarring speed bumps. It took far longer than it should have. I watched Steve - pale and weak - working to support his nodding head with arms that don't work well. It was terribly disheartening for me.

We were so relieved to get home. Relieved and exhausted. I got Steve to bed immediately, and he slept through three episodes of Six Feet Under.

The take-home messages here?
  • We're grateful that Access exists, and can easily appreciate its benefits.
  • As in any service, service providers will vary in qualifications - and in kindness.
  • Asking passengers for directions is reasonable - and it's respectful.
  • The people who can use the Access Bus service are more functional than many; they can, after all, call for reservations and negotiate the whole process.
But there's no doubt about it: the experience was just one more reminder that our lives have become even more marginialized by End Stage Renal Disease and the unexpected nightmare of Critical Illness Polyneuropathy.

Steve's take on the experience? "It offers the difference between some life and no life."

I came home feeling greatly respectful of the folks who have the gumption to get out in the world in spite of the ironic obstacles afforded by Access!

Take care,
Linda Gromko, MD