Join Jane McClure and me for Home Dialysis Central Webinar June 30!

Jane McClure and I, co-authors of "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor,'" are presenting a Webinar:

"Care for the Care Partner in Home Dialysis"

Wednesday, June 30 at 5:00 p.m. Pacific Daylight Time.

We'll examine:

• the impact of ESRD on the Care Partner
• the spectrum of what it involves to be a Care Partner
• the advantages for the Care Partner
• recognizing signs of Care Partner "burnout"
• supporting the Care Partner to prevent and treat "burnout"

Essentially, we are devoting our entire Webinar to the Care Partner - that most critical, yet often under-recognized part of successful Home Dialysis!

Visit http://www.homedialysis.org/ for more information.

By the way, this seminar applies to Care Partners in ALL circumstances!
Take cae. Linda Gromko, MD

Critical Illness Myopathy Challenges the Caregiver's Reserve

After almost three weeks in the Inpatient Rehab Unit with aggressive Physical and Occupational Therapy, Steve has made progress, but it has been slow. His condition has been defined as "Critical Illness Myopathy/Polyneuropathy." Evidently, Critical Illness Myopathy/Polyneuropathy is a global and profound weakness of muscles and nerves which typically follows a prolonged ICU course and/or sepsis. The condition can lift over time. But it may take many months.

So, as we think ahead -- and as we have recently learned that none of the Skilled Nursing Homes that take Medicare will even accept Steve, we turn again to Home Care.

One of the Rehab staff asked me how it would be different to do Home Dialysis with Steve now, as opposed to before his lengthy hospitalization. The differences are obvious. Before, Steve could sit up by himself. He could walk. He could weigh himself, take his own blood pressure, and generally participate more in his care.

He's medically more stable now, with a vastly improved left ventricular ejection fraction of 45-50%. And, his brain looked normal on this week's head CT.

As long as the Kidney Center approves, we will resume Home Hemodialysis soon. This will mean five treatments a week - but no transportation to and from a Center. The transportation wouldn't be covered by Medicare anyway, and it would be enormously disruptive and uncomfortable for Steve.

We turn to Home Dialysis again, with the hope that it will buy us more time until this perplexing condition of Critical Illness Myopathy runs its course.

We are so grateful that he is alive, and mobility via wheelchair  would certainly work. We both just want him to live as well as he can.

So send good wishes for us in this new chapter. This is a road we haven't traveled before, and we welcome all the support we can find.

Take care. Linda Gromko, MD

Arranging Your Life When Everything Goes to Health!

When Jane McClure and I wrote "Arranging Your Life When Dialysis Comes Home: The Underwear Factor," it became clear that our concepts could be generalized to an audience beyond the Kidney Community. Many people deal with chronic medical conditions in one way or another. Whether that means healing a broken limb, or dealing with an elderly parent, chronic health care in the home touches all of us.

Dealing with a chronic medical condition changes the way we live. Yet, we find that people spend more time preparing for a new baby than they do for other life-changing medical circumstances.

As Jane and I worked on "Arranging Your Life When Dialysis Comes Home," we realized that if you can manage Kidney Dialysis at home, you can manage just about anything!

So, we are presenting a seminar entitled "Arranging Your Life When Everything Goes to Health!"

Our first seminar will be presented at the Bainbridge Island Public Library on Sunday, July 11th from 1 to 4 pm. There will be a $25 fee for this seminar, with scholarships available.

Later seminars will be presented in Seattle at the Queen Anne Square Building at 200 W. Mercer.

If you would like to attend the July 11th seminar on beautiful Bainbridge Island, please contact me by email at ljgromko@msn.com or by mail at 200 W. Mercer #104; Seattle, WA 98119 -- we'll send a brochure.

Do you know of others who might benefit from such a seminar: church groups, caregiver support groups, etc.? Please feel free to pass this on to anyone who might benefit.

Take care. Linda Gromko, MD

Steve Enters the World of Rehab

After 89 days in the hospital -- in both the ICU and the Telemetry Unit, my husband Steve Williams was finally ready to move up two floors to the Inpatient Rehab Unit! He made the move this morning. It was a little disorienting for him, but he found his way as the day went on.

In order to be in the Inpatient Rehab Unit, you must be able to participate in therapies - usually Physical or Occupational Therapy - for a total of three hours each day!

For the first time since his admission in early March, Steve was moved into a wheelchair - by way of the Kermit-green sling and a variation of the old Hoyer lift. The remarkable thing is that he is almost able to sit up without support, and he can now support his head well enough so that our little tour around the Rehab Unit was a treat.

Rehab is a different world where patients wear clothes, not gowns. And the theme of the place is function - whether that means increased mobility, finding adaptive technologies, or gaining strength. The point is functioning in your world, whatever that may require.

And Steve needs all of this so badly! Now that he has a refurbished heart, and he's recovered from his acute cholecystitis and sepsis, he is ready to move ahead.

We have no delusions here; it's going to take a while before we can even entertain the possibility of Steve's coming home. But his medical problems have settled into the areas of End Stage Renal Failure and diabetes....familiar dragons we know!

As always, we are intrigued with the exploration of a new specialty area of medicine. What a different focus: function! But we wouldn't have gotten here without the miracle of Steve's heroic open heart surgery. We are most appreciative of this blessing.

Take care. Linda Gromko, MD

Steve Meets the "Johnny Jump-Up"

If you've been the parent or grandparent of a six-month-old baby, you know what a "Johnny Jump-Up" is. It's a cloth harness that supports your baby while you suspend him by a spring mechanism fastened to a door jamb. And your baby bounces enthusiastically up and down, pushing off the floor again and again. The baby's happy, and you can get enough time to pay your bills, or complete an assignment. Plus, it's a great little quadriceps and balance exercise for a baby!

So how does this relate to Steve, who's been bedridden for weeks after his critical heart surgery -- and most recently, septic with an acute cholecystitis (gall bladder infection)?

If you've been bedridden for a while, you have to relearn how to support your trunk. You have to learn how to be vertical again!

In the ingenious world of Physical Therapy, there's a contraption that reminds me of that Johnny Jump-Up. With three Physical Therapists working together, Steve was secured into a Kermit-the-Frog-green sling, They carefully hoisted him to a vertical position. With some practice, Steve could transition to a vertical posture -- and find his feet.

Now, he's not a toddler just yet, but this is an enormous step in the right direction!

With more muscle development, time, and a lot more practice, we'll see him emerge yet -- refurbished heart and all. We continue to be amazed at adaptive technologies that contribute to his recovery.

Take care.
Linda Gromko, MD

Back to the Books

I'll be doing a book signing at Eagle Harbor Book Company on Bainbridge Island for "Complications: A Doctor's Love Story" on Thursday, June 10 from 7:30-8:30 p.m. The bookstore is located at 157 Winslow Way East; Bainbridge Island, WA. It's a one-of-a-kind independent bookstore, with a unique regional flavor.

Catch the 5:30 p.m. or 6:20 p.m. ferry to Bainbridge, leaving from Seattle's Coleman dock. The bookstore is walking distance from the ferry, and there are several great spots to eat and shop along the way.

"Complications: A Doctor's Love Story" takes Steve and me through our early days as a couple. I found him through my Internet ad: "I'd like to meet a nice Democrat."

What I didn't count on were the complications we encountered. Steve had full custody of then nine-year-old Brita -- who greeted me with "I hate every centimeter of you; get used to it!" Then, there were the complications of Steve's health. Known to have diabetes and high blood pressure for years, Steve descended rapidly into the abyss of Acute Renal Failure.

"Complications: A Doctor's Love Story" is one of the few books written about ESRD from a personal standpoint. It also provides an intimate view of Home Hemodialysis, and one family's journey through a major health change. 

So, please come to Bainbridge Island on Thursday, June 10!. Take a lovely evening ferry ride to the other side of the sound, and learn more about our family's adventures along the way. I will also have copies of "Arranging Your Life When Dialysis Comes Home: The Underwear Factor" which I co-authored with Interior Designer Jane McClure.

Thank you for your support.

Take care. Linda Gromko, MD

"But I was only gone for two days!"

Steve has been recovering from his aortic valve replacement and coronary bypass surgery since early March. Slowly eeking towards a stint on Rehab, we have seen progress daily -- but it has been very slow. He hasn't been able to stand up. He can now sit up with help, and only last week he wiped his chin for the very first time!

I had a medical conference to attend in New Jersey Thursday and Friday of last week -- a training event offered only twice a year. I orchestrated my flights so I'd spend the least possible time away, leaving late Wednesday afternoon and returning Friday evening. Besides, I could speak to Steve on the phone.

When I spoke with him on Friday noon, he sounded fine.

But when I got to the hospital at midnight, he had a temperature of 101.5, his white blood cell count had doubled to 26, and he was disoriented.

And I mean really disoriented. The choppers were landing behind his sister Carole, and he was begging to get out of his birthday suit! He couldn't get comfortable, and the focus of his pain was his right upper abdomen.

While there were a number of possibilities, acute cholecyctitis was the leading differential diagnosis. Blood cultures were drawn -- and were growing bacteria (enterococci) by Sunday. A trio of heavy-duty antibiotics was started, and as I write this, Steve is in the Interventional Radiology Department having a drainage tube placed in his gall bladder. He's far too fragile for either a laparoscopic or open cholecystectomy; that will have to wait for a more stable time.

The trip to Interventional Radiology affords Steve another advantage: he needs more IV access. Already dialyzing through a tunneled subclavian catheter, Steve needs more lines for the raft of antibiotics needed to fight his sepsis. The right arm -- with its "curing" fistula-in-development -- isn't an option.

I'm pretty sure there's nothing I would have picked up if I hadn't gone to my conference - if I'd stayed in Seattle. But, a flash of guilt assuredly did pass through my mind.

Caregivers need clones. We can't be everywhere; we can't anticipate every bump in the road. But we somehow feel we should be able to protect our loved ones from fates beyond our control!

As I was reminded on the plane from Newark, "place your own oxygen mask on your face first, and THEN tend to your children or other passengers who need assistance." We have to give ourselves a break! And everything is simply NOT within our control.

Take care. Linda Gromko, MD