The Little Kidney Blog Hits 10,000 Pageviews!

Today, my little "Kidney Blog" hit 10,000 page views. I know that may not be an enormous readership as blogs go, but for a little blog of such humble beginnngs - and grandiose intentions - it feels like a milestone to me.

The intentions have been as follows:

• To chronicle issues of Home Dialysis, both hemodialysis and peritoneal dialysis - at least from the experience of Steve and me
• To focus on the support of the all-important CarePartner in Home Dialysis
• To increase awareness of Chronic Kidney Disease - and its prevention.

But the blog has covered other issues also. Issues like rehab, dealing with chronic illness, grieving, preparing the home for ongoing medical care. The most widely read post was not about kidney disease at all!

From the blog's beginning on October 25, 2009, the most popular posts have been:

• A Young Breast Cancer Survivor Talks About Discussing Chronic Conditions with Children - March 10, 2010.
• Stephen Martin Williams (8/16/49-4/13/2011) - April 14,2011
• Welcome to Linda Gromko's Blog - October 25, 2009
• Amputation Puns and Drug Delerium - April 10, 2011
• The Inn at Cherry Hill - Useful Recycling of Old Hospital Space - April 15, 2010

Thank you for following along on this journey. Please keep reading as the journey continues.

Take care,
Linda Gromko, MD

Journaling Reminds us Where We've Been

I don't write an official "journal." Rather, I write chapters - currently, I am working on a book with the working title: "From Complications to Grace: A Family Doctor's Journey." This will be the "rest of the story." My first book, "Complications: A Doctor's Love Story,":chronicled Steve's first year of End Stage Renal Disease, discussed Home Dialysis in some detail, and basically told the story of finding an atypical love in midlife.

Another great tool for journaling is, of course, blogging. This very simple accessible tool allows us to chronicle our own lives - and to be diligent at the discipline of regular writing. (Try your own at http://www.blogger.com/.)

Why should we journal anyway?

In my experience, journaling - by whatever techique you happen to like - is inexpensive therapy. It collects our thoughts, allows us to ventilate, and most importantly, allows us to keep track of what we've gone through. It facilitates enormous catharsis.

My favorite journaling outcome is that I can say, " I may be stressed or struggling right now, but look what I've made it through! This is a relatively easier time. I can certainly make it through this."

Simply put, journaling reminds us that we are stronger than we might believe at any given moment.

Look for "From Complications to Grace: A Family Doctor's Journey" sometime this winter. It won't be boring. And I'm open to any modifications of my working title. I remember that Steve's preferred title for the first book was "Steve Williams is Sexually Gifted."

Journaling keeps our humor accessible, even when we are grieving.

Take care,
Linda Gromko, MD

Journaling Reminds us of What We've Done, Where We've Been

How Could a Caregiver Miss Dialysis?

My husband Steve will have been gone, i.e. dead, for four months as of today. I have slept, almost uninterrupted, for that entire time - not waking up to reposition him through the night.

He wasn't a "typical" dialysis patient, if such exists. He had "Critical Illness Myopathy," and therefore, had limited movement. He was wheelchair-bound. He couldn't move himself to a sitting position or turn over by himself. All activities of daily living required assistance.

Home hemodialysis gave way to home peritoneal dialysis when blood access points became unavailabe. Finally, after a leg amputation, Steve's body just gave out.

My life has been full of changes - the greatest, of course, is that I miss Steve. I'm very busy: with my medical practice, with rowing, with writing. And most of the time, I get by with just managing the busy-ness. It isn't avoidant; I feel more normal when I'm occupied.

I remember when a friend's husband was very ill and transitioned to in-Center dialysis, she commented that she missed doing home dialysis. 

I "got it" then, of course. She probably missed the closeness of the required attention, and sensed the foreboding of the change.

I miss the ritualistic closeness - the time Steve and I spent together in this chosen path. We knew it beat the alternatives hands down: the alternatives being death or in-Center dialysis.

I miss the movies we watched during dialysis, the ever-present cooking shows (even when Steve's sense of taste was altered and his appetite was so limited), the political prorams, and our favorites "Dexter" and "The Deadliest Catch."

I miss the fact that I could do something for him - and with him - that made the nightmare of renal failure more tolerable. Mostly, of course, I just miss him.

Steve's birthday comes up on August 16, just days away. Each anniversary, each special day, brings new rememberences. I'm not sure what I'll do on that day - but I'm sure I won't let it just sneak up on me and blindside me the way the Fourth of July did.

Joni Mitchell's song lamented, "Don't it always seem to go, that you don't know what you've got til it's gone?" Well, I knew what I had - then and now - a good man, a soulmate, a partner.

Take care,
Linda Gromko, MD

Fourth of July Brings Grief Advice

Yesterday, I took a Maas Aero single out to Lake Union to row. It's a stable boat - perfect for the choppy water we had for such a sunny Fourth of July.

I rowed past the familiar houseboats. Lady Liberty's balloon head bobbled on top of the Gas Works Park hill. There was an enormous barge secured in the middle of the lake, preparing for the evening's fireworks event. And the American flag flew from the spire of the Space Needle, replacing the rainbow flag that honored Gay Pride only the week before. Seattle is a great place to live!

But as I rowed, I realized I had forgotten my own advice about grieving. I'd often tell patients:

"Be prepared for holidays or other special days when you are grieving. Grief can blindside you - particularly on the first of every "special day" you encounter after the death of a loved one."

And it's true. Each holiday, each birthday, each anniversary for that first year can be especially agonizing.

So there I was, rowing alone on the Fourth of July - my first Fourth of July without Steve. Only four years earlier, we had a great family photo taken of Steve, Brita, and me - on a friend's Lake Union houseboat on Independence Day. Before the fireworks began - and before Steve fell into the hell of kidney failure.

Now, "my" lake was reminding me of all those memories of an earlier, more innocent time.

Steve, Brita, and Linda on July 4, 2006

What would Steve and I have done on this glorious day, had he lived? In our lives, there would have been medications and dialysis, of course - but undoubtedly, there would have been a movie via Access Bus, a barbecue, or a party with friends.

This holiday turned out to be okay: a little lonely, but okay. I turned my attention to writing. I found the new Elliott Bay Bookstore on Capitol hill and bought "The Happiness Project."

And I waited in line to buy a single scoop of salted caramel ice cream at Molly Moon's just around the corner from the bookstore.

Our own advice is generally good - as long as we remember to take it!

Take care,
Linda Gromko, MD

"Whose Life is it Anyway?" Film Shows - How Far We've Come - in Some Ways

The other day, browsing on Xfinity for something to watch in the "Free Movies" category, I came across the 1981 film, "Whose Life is it Anyway?" starring Richard Dreyfus.

The film told the story of a promising young sculptor who was severely injured in a sportscar vs. semi-truck accident. Dreyfus' character suffered a high cervical spinal cord transsetion, and was left a quadriplegic. Moreover, his internal bleeding resulted in a bilateral nephrectomy - so he had no kidney function at all and was placed on regular hemodialysis.

After the gravity of his situation sunk in, the sculptor asked to have no further treatment - and without dialysis, he would certainly die.

The request spawned an enormous debate among hospital personnel, finally resulting in a private trial - and ultimately, we assume, in the sculptor getting his wish.

It was interesting to see how our medical culture has changed. The scenes depicting doctors smoking in the lounge were obsolete, of course. Though I remember working to change the smoking policy at Swedish/Ballard in the late '80s. Until that time, smoking was common in most hospitals - among patients and personnel. Imagine!

"Whose Life is it Anyway?" was highly "sanitized." Dreyfus' character didn't look like any quadriplegic I've known: no contractures, no muscle atrophy, no visible surgical scars. 

But his deep sigh when a dialysis treatment started was highly recognizable. I so remember this with Steve; he hated "being on the hose," although he clearly valued the fact that dialysis kept him alive.

I remember seeing a booklet at the Northwest Kidney Centers - entitled "When It's Time to Stop Dialysis." I never read it; we simply weren't "there."

But, how wonderful it is that a patient wouldn't have to put up a fight to end treatment - at least not with the court. We now see withdrawal of treatment as a patient's right.

Steve and I had spoken many times about "not letting him suffer." When it's time to die, I believe a person knows this at a very deep level. I suspect that's what Steve was conveying when he said, "Wasn't I supposed to die yesterday?" - the day before he actually died.

End of life issues will always be charged, tough issues - for patients, for families, for society in general. I'm personally glad we've made some progress in this area since the Dreyfus film. It's interesting to watch; you might put it on your list.

Take care,
Linda Gromko, MD

The Feminist Widow in Car World - and The Susan B. Komen 5K Walk

Well, I'm not sure what this post has to do with dialysis, but I'm very sure what it has to do with widowhood. Even in an egalitarian relationship like Steve and I had, there were certain things he just did better than I did - and therefore, fell to him. Like car buying/leasing.

Steve loved cars. Cars with every new doo-dad, every new technology. I had never known that cars could even come with heated seats until I met Steve with his grey VW Toureg. He had the heated seats, the leather interior, the teak trim, and all the rest. It was nice, but it was, well - a car.

For me, a car has to be dependable - and handle reasonably well in the snow. A CD player would be great. But that's about it.

Steve chose my last car, a Suburu Forrester - sort of a small SUV that gave me the illusion of being able to venture into mountains and take a kayak somewhere. Maybe that was his illusion. In truth, I basically went to Costco and that was about it.

Another truth about widowhood is that I need to take a careful look at finances, cutting expenses where I can. A lower lease payment seemed reasonable to me.

Looking at several cars, I could "feel" Steve saying "don't even think about that little toy car, Linda Jo," and I passed up a compact sedan in a tomato bisque color. That would have completely offended Steve's design sensibilities!

But settling into a VW Jetta with a lower payment and enough bells and whistles for anyone's purposes, I felt at peace. At peace, mind you!

Feminist Dr. Linda still seeking Steve's approval about a car purchase? Well, yeah.

But I hear this from other widows, too. Wanting to ask him something; wanting to tell him something. Wanting to poke him in the arm for not being there when I had a car question.

Widowhood? Not my favorite chapter.

But then, there was the earlier part of my day. Yesterday morning, I joined a few thousand others in the Susan B. Komen 5K Walk (or "Walk-not-Run-for-the-love-of-God!") For the Cure.

That's a reality check for you. Our group of sixteen included daughter Brita and her pal Carla. We were walking in support of one of my officemates, Margaret Provenzano, diagnosed with breast cancer a year ago - and doing beautifully. Her pink "surviver shirt" spoke volumes.

Margaret and a group of fans ("Team Provenzano") pose after the Susan B. Komen event on June 5, 2011.

We spotted a man carrying his pre-schooler on his shoulders. His T-shirt read "In memory of my mother; in memory of my wife; with hope for my daughter."

For all the free bagels and pink flipflops, this is serious stuff.

Yet, I remember when I started my practice some twenty-plus years ago, breast cancer was practically a death sentence. Period. Not anymore, though.

I hope the future of kidney disease gets brighter. For now, prevention is the only real answer. As Steve would say, "By the time you're on dialysis, that ship has sailed."

But that's not completely true, either. There's transplant. There's better dialysis. There's home dialysis in its various forms.

Yesterday was a good reminder of the various burdens we bear: widowhood, breast cancer, kidney failure - and the very real hope that's tangled up in all of them.

Take care,
Linda Gromko, MD