I've been in health care as a nurse or as a physician for nearly forty years. I've seen people live and die with all sorts of illnesses. But never any disease as relentless or as complex as End Stage Renal Failure. Thankfully, we have transplant and dialysis - but these aren't exactly a walk in the park.
With dialysis, you must affirm your decision to live every day - or at least, you affirm your decision to try not to die.
"Civilians" don't always do that - and maybe we should.
Today, in a Ceremony of Remembrance held at the SeaTac Kidney Center, a harp played as folks gathered. Then, a chaplain lead readings about grief and loss.
At one point, everyone was given the opportunity to place a colorful stone in a bowl of water at the front of the room. The bowl sat on what looked something like an altar, flanked by a floral arrangement and flickering candles. We then took another stone with us to keep as a remembrance.
Person after person stood, approached the table, and picked up their polished stones.
"For my husband, Steve Williams," I said, as I deposited the stone with the others in the bowl of water.
"For my little brother, Steve Williams," said Carole.
And on and on, each person remembering a spouse, a parent, or worse - a child. Some of the losses were very recent. The Kidney Center organizers had been considerate in leaving a small packet of Kleenex on every other chair.
Everybody in that room - at least everybody who had lost someone - knew about kidney disease in a way the rest of the world simply cannot.
As we left, we noticed that wall defining our hallway was shared by an active dialysis center - with treatments going on, even as we remembered our lost loved ones. We saw the overhead television monitors; we couldn't see the patients, of course.
But we knew that somebody there was likely having fistula challenges. Somebody was forgetting to take their phosphate binders. Somebody was having muscle cramps at the end of their treatment. Somebody was waiting for a transplant. Somebody was watching football to pass the time, and somebody was simply bored.
End Stage Renal Failure is a condition you want to prevent at all costs. Remember, the most common causes are high blood pressure and diabetes - often preventable, always modifiable.
On a day of remembrance, we remember the people we've lost. But, we remember what the disease was like also.
Take care,
Linda Gromko, MD
Saturday, December 3, 2011
Tuesday, November 8, 2011
Ceremony of Remembrance Set for Saturday, December 3, 2011
The Northwest Kidney Centers' annual Ceremony of Remembrance is scheduled for Saturday, December 3rd at the SeaTac Pavilion (17900 International Boulevard South; SeaTac, WA 98188). The ceremony will be held from 10-11 a.m. Attendees are invited to bring a memento of their loved one for the Memory Table.
So, what to put on the Memory Table? There's certainly no one thing that captures the essence of my late husband, Steve Williams.
Maybe the grey knit stocking cap and matching gloves I'd put on Steve when we'd go on our dates during the last few months of his life. Dates via Access Bus that allowed us to take in a movie and a meal, dates that gave us a few wonderful hours of fantasy-normalcy each week.
Or maybe it will be the "Life is Good" brand T-shirt I bought for Steve when we went to San Diego for the IHRSA Convention (a convention for those in the fitness industry). We went with dialysis machine and all - dialyzing him in the hotel in the evenings. Steve wore that shirt constantly. Maybe it was the salmon on the front; maybe it was the caption: "Good Catch." He was a great catch!
I'm glad there's a ceremony. People we love slip away too fast, and the world moves on - as it should. But the people left behind after a loved one's kidney failure and dialysis have a different perspective of the world, I'd imagine. I know I do.
For further details, and RSVP information, google up Northwest Kidney Centers.
Take care,
Linda Gromko, MD
So, what to put on the Memory Table? There's certainly no one thing that captures the essence of my late husband, Steve Williams.
Maybe the grey knit stocking cap and matching gloves I'd put on Steve when we'd go on our dates during the last few months of his life. Dates via Access Bus that allowed us to take in a movie and a meal, dates that gave us a few wonderful hours of fantasy-normalcy each week.
 |
| "Linda Jo," Steve would say referencing his marginal appearance, "Let's go out and sell us some pencils!" |
Or maybe it will be the "Life is Good" brand T-shirt I bought for Steve when we went to San Diego for the IHRSA Convention (a convention for those in the fitness industry). We went with dialysis machine and all - dialyzing him in the hotel in the evenings. Steve wore that shirt constantly. Maybe it was the salmon on the front; maybe it was the caption: "Good Catch." He was a great catch!
I'm glad there's a ceremony. People we love slip away too fast, and the world moves on - as it should. But the people left behind after a loved one's kidney failure and dialysis have a different perspective of the world, I'd imagine. I know I do.
For further details, and RSVP information, google up Northwest Kidney Centers.
Take care,
Linda Gromko, MD
Friday, September 2, 2011
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:
From the blog's beginning on October 25, 2009, the most popular posts have been:
Take care,
Linda Gromko, MD
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.
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
Take care,
Linda Gromko, MD
Sunday, August 28, 2011
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
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
Saturday, August 13, 2011
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
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
Tuesday, July 5, 2011
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.
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
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
Tuesday, June 28, 2011
"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 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
Subscribe to:
Posts (Atom)