Arranging Your Life When Dialysis Comes Home Wins Global eBook Award

Arranging Your Life When Dialysis Comes Home: "The Underwear Factor" has won a 2012 Global eBook Award.

Published in 11/2009, the book was written by Interior Designer Jane McClure, and me. Born out of sheer practicality, this manual is intended to assist folks on Home Dialysis organize their living space - and their lives - as they provide life-saving medical care at home.

Early in the Home Hemodialyis process, Steve and I were forced to put our home on the market to sell. The boxes of dialysis equipment and medical supplies - let alone the dialysis machine - were not considered enhancements! Can you imagine our "open house?"

We asked Interior Designer Jane McClure to help us "stage" the home for sale. In the process, we learned volumes about the dynamics of homecare. We learned that:

• It's important to maintain one's bedroom as a place of refuge - even if dialysis is performed there
• Home Dialysis impacted our adolescent daughter and her friends; our whole family quickly learned that we'd have "dialysis friends" and "non-dialysis friends."
• Simple storage solutions and furniture arrangements can work wonders in providing efficiency and comfort
• Feeling in control of one's environment is especially important - when other things can feel so out of control!

The Global eBook competition draws worldwide entrants.  One of the judges weighing in on Arranging Your Life When Dialysis Comes Come was Dr. Rene Chang, the retired Director of a Transplant Program in London.

Arranging Your Life When Dialysis Comes Home: "The Underwear Factor" is available on Amazon.com as a paperback or Kindle book.

Oh, why "The Underwear Factor"? Coined by Steve's nephrologist, Dr. Smiley Thakur, this term refers to the fact Home Dialysis allows you the freedom to dialyze on your own terms - even in the comfort of your underwear!

Take care,
Linda Gromko, MD

"Help! I Need Dialysis!" - A Masterful Book Offering a Comprehensive Look at Kidney Failure and Dialysis

When kidney failure and the prospect of dialysis loom ahead, nothing beats a user-friendly, credible reference book. But such books have been few and far between. Dori Schatell and Dr. John Agar have just released the definitive reference, and it should be required reading for anyone even peripherally involved in Kidney World.

 

• It's clear and easy to read, distilling hard science into learnable content. You don't have to be a health care professional to read this book - but if you are, you'll find it helpful and non-condescending. This is a perfect reference for health care providers who don't have dialysis as part of daily practice.
• I liked the fact that you can pick this book up at any chapter where you need information - or you can read it cover-to-cover.
• Home dialysis (both hemodialyis and peritoneal dialysis) are included as viable, practical options. But nothing's "sugar-coated" here.
• The essentials of kidney function - in health and disease - are  succinctly covered.

 

None of this should come as a surprise, given the authors. Dr. John Agar is an internationally known nephrologist from Australia, and a staunch advocate for home dialysis. Dori Schatell, MS, is the Executive Director of The Medical Education Institute, Inc., a not-for-profit organization that focuses on helping people manage chronic illness. You'll recognize the organization as the one that brings us Home Dialysis Central. John Agar and Dori Schatell bring decades of credibility to this book.

 

Wouldn't it be wonderful if some benefactor simply provided this book for every family as they entered Stage 4 Chronic Kidney Disease, or began their dialysis training?

 

Thanks to Dr. Agar and Ms. Schatell for providing the best educational offering yet! It will help so many people.

 

Available on Amazon.com.

 

Take care,

Linda Gromko, MD

Come Hear Steve's Story at Third Place Books

You are invited to join me for a reading from

 Let Me Go When the Banter Stops:

A Doctor's Fight for the Love of Her Life

Tuesday, September 4, 2012

7:00 - 8:00 pm

Third Place Books

17171 Bothell Way Northest

Lake Forest Park

Hope to see you there for Steve's story,

plenty of humor and good memories...

and important lessons he taught us!

Take care,

Linda Gromko, MD

Here's the addendum: Linda speaking with Steve's photo on the powerpoint.

 

New Book is Now Available on Kindle

My latest book, Let Me Go When the Banter Stops: A Doctor's Fight for the Love of Her Life, has just been released on Kindle. Check it out on Amazon.com; $7.99.

Complications: A Doctor's Love Story is also available on Kindle for $6.99.

The third book in the "Kidney Trilogy" is Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor,'" co-authored with Interior Designer Jane C. McClure. Again, available on Kindle for $6.99.

These books are among the only offerings about chronic kidney disease from a patient and family perspective available! Arranging Your Life When Dialysis Comes Home is truly unique in addressing the day-to-day needs of home dialysis patients and their CarePartners.

All three books are available in paperback as well, on Amazon.com, through my website at www.LindaGromkoMD.com, and at bookstores.

Take care,
Linda Gromko, MD

"Let Me Go When the Banter Stops: A Doctor's Fight for the Love of Her Life" Honors Seattle Nurses

Let Me Go When the Banter Stops: A Doctor's Fight for the Love of Her Life is the story of my husband Steve Williams and his valiant struggle with diabetic kidney failure. The book, released this week, is dedicated to the ICU/CCU nurses at University Hospital and Swedish Medical Center in Seattle, as well as the nurses at the Northwest Kidney Centers.

This photo was taken by Bainbridge Island photographer Cameron Karsten in 7/2009 - just before
Steve and Linda went to pick up the newly born copies of Complications: A Doctor's Love Story.
It was only when the owner of the rickety Bainbridge dock came out to shush us away that
 we all noticed the "No Trespassing" sign at my feet!

Writing this book was an exercise of love: it is the story of Steve and our scrappy little Bainbridge Island family! This book covers the journey from just before Steve's living donor kidney transplant through his many complications - then to his strangling aortic valve stenosis and bypass graft - then to critical illness myopathy,and finally, to his death at 61 - one week after a leg amputation. Throughout the book, we cover the day-to-day exercise of home dialysis - both hemodialysis and peritoneal dialysis.

Always medical, but grounded in Steve's humor, this is a true love story. It's also a quick crash course in kidney disease; Steve had nearly every complication on the menu.

Moreover, our journey took Steve and me back to my medical school alma mater - and to the hospital where I have staff privileges. It's an honest view from the combined perspective of an insider AND a patient advocate and caregiver.

Just like Steve's care, the book became a community effort. One hundred individuals gave their permission to be named in the book - including Steve's nephrologist, Dr. Smiley Thakur; his cardiologist, Dr. Humera Ali; his cardiothoracic surgeon, Dr. Joseph Teply. I am personally grateful for the foreword, written by UW faculty nephrologist, Dr. Pat Fleet.

The book is currently available in paperback through my website(www.LindaGromkoMD.com), and through Amazon.com. A Kindle version will be available in a few weeks.

I welcome your opinions about the book, and am actively seeking opportunities to speak about its content and themes.

Take care,

Linda Gromko, MD

www.LindaGromkoMD.com

A Special Anniversary, but Steve's Still Dead

As April 13 grew near, I sensed relief that Brita and I had made it through this significant first year after the death of my husband Steve Williams - and Brita's father. Since neither of us were wanting to deal with work or school on that day, we planned a truly wonderful day. (Note: we planned the day; we didn't just let it catch us off guard; we thought it through carefully.)

For me, it started with rowing at 5 a.m. The moon in the clear dark sky was a perfect half-circle; not a crescent, but an exact half-circle as though the moon had been bisected along a perfect seam. I'd never seen a moon quite like it.

After I rowed, Brita and I took the ferry to Bainbridge, and stopped for oatmeal and toast at Steve's old haunt, the "career corner" at Bainbridge Bakers. Then, Brita and I traveled north to Port Townsend, another favorite. We wandered through Fort Warden - the site of so many weekend drives.

We took Steve with us, that is, we took his "cremains" in the paper mache box from the funeral home. Brita and I found a beautiful spot on the sunlit beach and scattered a couple handfuls of Steve into the sound. We couldn't part with all of him, but couldn't resist joking about which parts we might have "parted out."

With the bright sun in her face, Brita, sixteen, holds "the box" that's been
kept safe in her room since last April.

Back in Seattle, Brita and I capped off the day with spa massages - a treat that Steve would have surely chosen for "his girls."

So, we made it through the anniversary, awakening only to find that Steve's still dead. Another chapter begins.

Take care,
Linda Gromko, MD

Grief Lives in the Marrow

I feel it in my bones; we're coming to the anniversary of Steve's death on April 13, 2011. I've had grief experiences before. I know how it feels impossibly difficult at the beginning, then it softens, then it comes in waves as innocent stimuli from the world open wounds that were only tenuously knit together.

Anniversary Phenomenon in medicine refers to that under-the-surface sense that something isn't quite right: a visceral understanding of heightened vulnerability born out of a prior loss. 

In my medical practice, when people are feeling sad/lonely/depressed/scattered/hopeless/"off," I'll ask, "Did something of any particular significance happen to you at this time of year?"

The answer is often, "Oh, yes...it was at this time of year when my brother died," or something of similar importance. That's when we talk about the power of grief, and the power of Anniversary Phenomenon.

So, now as we near the end of March, I remember the wound on Steve's big toe: the impossibly large blood blister that appeared the day the elevator door closed on his foot - or maybe, his feet - in the candy-apple red electric wheelchair. It happened on a date: one of our deliciously normal movie dates to a movie and a meal, courtesy of the sometimes uneven courtesy extended by the Access Bus.

I remember the horror as the healing foot suddenly changed: dusky black spreading through the forefoot, lines of dessication along the sole of the devitalized foot.

This photo shows Steve and me preparing for an after-Christmas party in 2009. It was in March 2010 that he had his enormous heart surgery to replace a strangling aortic valve and bypass narrowed coronary vessels. He was terribly sick even in this photo - on dialysis, his heart failing - but he was ambulatory. I love this photo of us working together, to prepare for one of Steve's favorite activities: food with friends on Bainbridge Island.

Brita and I have worked to establish a new normal, and for the most part, I think we've been very successful. But Steve's presence was big in every way. We all miss him.

I know in my heart that he would likely have gotten much sicker, in spite of his valiant struggle and in spite of our cooperative efforts to win him more time. I am comforted by the fact that it is I - not he - who is grieving. At least, we think death exempts us from that piece.

Steve's story: Let Me Go When the Banter Stops: A Doctor's Fight for the Love of Her Life comes out in May. I'm half-joking with friends that I'll promote it with a free box of Kleenex. But then, that would have been a Steve Williams marketing tool!

Take the best of care,
Linda Gromko, MD
Author of Complications: A Doctor's Love Story

"Let Me Go When the Banter Stops" is Coming in May!

We're getting closer to the first anniversary of Steve's death. I do not miss dialysis, but I sure miss him.

I wrote throughout Steve's illness - his fall into acute-on-chronic renal failure, his heart events and heart surgery, his critical illness myopathy, his leg amputation, and finally, his death on April 13, 2011. Through chapters written in real time, through correspondence, through this blog and medical records, Steve's story is carefully chronicled.

"Let Me Go When the Banter Stops: A Doctor's Fight for the Love of her Life" will be released in May 2012.

As I gathered consent signatures from over one-hundred individuals, i.e. consent to be named in the story, it became apparent to me that Let Me Go When the Banter Stops represents a true community effort. And a tribute to Steve and the people who worked so hard to try to get him to the point of having a second kidney transplant.

I worked for hours to prepare the manuscript and photos for submission. I got them all in...and within two hours, my computer simply crashed. It was as though the little laptop limped along just far enough to get this project off the ground! And then, time for a break.

This unusual photo captures Steve all velcro'd into the standing table: a device used
to help him learn to adjust to standing after months of being bed-ridden. He
managed to stand for a total of two minutes, but the dream of walking was out of reach.


There's a lot of medicine in the book. I sincerely wanted to educate people about metabolic syndrome, diabetes, renal failure - and the prevention of these maladies. But at its core, the book is always a true love story.

Let Me Go When the Banter Stops will be available through my website (http://www.lindagromkomd.com/) and through Amazon.com. A Kindle edition will also be available.

Take care,
Linda Gromko, MD

Time to Get Zealous!

I'm attending a Continuing Medical Education conference presented by the University of Washington today and tomorrow. It's a comprehensive CME on Diabetes for the Primary Care Provider.

Having done my late husband's home dialysis care for several years, I am very aware of the human costs of diabetic renal failure. Puncturing your spouse's arms with 15 gauge needles several times a week gives you the right to be a bit of zealot in wanting to prevent diabetes in general, and its renal complications in particular.

We offer a Weight Loss Program in my primary care clinic.Throughout the conference, we're hearing "diet and exercise." That's what we offer - and we take our clients on activities: rowing, kayaking, walking, etc. We're serious!



Queen Anne Medical Weight Loss holds an "Experience Rowing" event at

Lake Washington Rowing Club in May, 2011. This boat had lost a total of 300 pounds: enough

to "build" two whole rowers!



There's just no question about it: we can help reduce the severity and complications of diabetes through lifestyle measures: weight control, physical activity, etc.

We all need to be zealots in the area of prevention: health care providers, educators - all of us. Especially when you know what the consequences of diabetes can be, like I do.

Take care,

Linda Gromko, MD