Warning: Home Dialysis Families Question Authority(!)

I'm guessing that people who do Home Dialysis are probably more self-directed, more independent, and maybe more "invested" in their care than the average patient. Or at the very least, they come with rugged CarePartners!

When Steve was planning to come home from his four-month hospitalization last month, he had very little physical mobility. He could be transfered by a lift to a wheelchair - but the act was almost entirely passive on his part, and Steve weighs 200 pounds.

In the hospital, such lifts look like industrial meat hooks which run along built-in tracks on the ceiling. You position your patient on a fabric sling, and attach the sling to the hooks overhead. The patient is "levitated" with a squeeze of the handle. The electric lifts are simple to use, and comfortable for staff and patients alike. And in this age of morbid obesity, the overhead lifts greatly simplify the care of very large patients.

The home version, however - at least the version that Medicare provides - is a sling mechanism which is hooked to a hand-operated pump. Gathering the patient up with the six sturdy straps on the same fabric sling, you attach the strap loops to the Hoyer Lift, and pump away using muscle power - not electricity. The patient is raised a little with each pump, then pivoted within range of a wheelchair. The patient is then lowered gradually into the chair.

I used the same Hoyer Lift when I was a nursing student in the early 1970's. Nothing's changed here, except that the patient is my husband with no capacity to save himself if I make a serious mistake.

The Occupational Therapist in the hospital stated emphatically,

     "You cannot operate the Hoyer Lift and transfer Steve to a wheelchair by yourself! You simply cannot do it!"

     "If it can be done safely, I MUST learn how to do it," I insisted. "In our home, we won't have a staff. We have to be able to function independently. Teach me how to do it."

The next day, a sympathetic Physical Therapist spent an hour showing me how to operate the pump Hoyer. We tried all sorts of tricks - and it was a challenge!

At home, our first Hoyer-to-wheelchair transfer was a near disaster. I called our friend George Mead, who had used the Hoyer to transfer his father when he'd had a stroke. George - with the help of friend and colleague Jane McClure - took us through hours of practice, with Jane as the "patient."

The point is this: this maneuver can be done safely at home - with adequate training and practice. NOT training me would have meant more immobility risks for Steve. And training me meant a better quality of home care.

It parallels Home Hemodialysis: it may not be for everyone. But for the appropriate patient and family, this added layer of training improves patient care and quality of life. I'm happy to report that this part of Steve's care is working seamlessly - with me and Steve's individual caregivers each operating the device solo.

But, as a family member, you have to ask and be assertive to receive this level of training. We're glad we did.
Take care. Linda Gromko, MD

Looking for "Normal" in the Midst of "Very Different"

A patient and I were chatting about doing things which feel "normal" when life is complicated by factors such as chronic illness, Home Dialysis, 24 hour-a-day care, and so on.

"Find anything you like to do - anything!" I said. "When Steve and I were first doing Home Hemodialysis, we watched program after program of the HBO hit, Dexter. You know - the one about the Police Blood Spatter Expert who was a serial killer, but always did the right thing!"

"A Blood Spatter expert and Home Hemodialysis together?" we joked. "In the same room?"

Ironic? You bet! But Home Hemodialysis is the elephant in the bedroom that's not going away anytime soon. And Dexter provided the perfect diversion: a little dark, a little sinister, and very funny.

So, now that we're in a new chapter - with Steve experiencing mobility challenges, and new troubles with that once-perfect fistula - we're off to a new series, with DVDs lent by my friend and work colleague Brian Grev.

"This go-round, we're watching Six Feet Under!" I told my patient.

It makes the time pass, it's absorbing - and Steve and I feel more normal! A little irreverent humor is always helpful when we're looking to feel more like ourselves!
Take care,
Linda Gromko, MD

Steve Stood Up!!

Home from his four-month hospitalization on July 12, Steve has been making steady improvement. He has been working hard in Physical Therapy and Occupational Therapy. His diabetes has been under perfect control; his appetite has increased. Home Hemodialysis has gone well with a wonderful new fistula that has produced NO problems!

But the biggest news is this: Steve stood up - spotted, but unaided, for a minute-and-a-half yesterday. He stood two more times, for a total of three minutes! (His Physical Therapist and exceptional caregiver, Angelito, flanked him - of course.)

Steve understands that walking remains a ways away....but what a great start! For me, it was hard not to have been there to see it.

It was a little like having your child take their first steps at daycare. You celebrate the victory, but ache to have been there in person!

This is not a complaint, mind you. I am so pleased with the way Steve has progressed. Walking does seem to be on the horizon at some point. What's best, though, is that Steve has made an excellent recovery with his virtually re-built heart - and no new problems have surfaced. We are so thankful.

So Critical Illness Myopathy? We see this...and move to conquer this challenge, too! Resilience is the single most important quality a person can have!

Take care,
Linda Gromko, MD

Steve Comes Home!

I've been a bit neglectful of the blog lately, but I really have been busy. The big story is this:

Steve came home on Monday, July 12!

Now, a lot is very different: we are now in a new rental home - a wheelchair accessible home just north of Seattle in Lake Forest Park. Steve requires round-the-clock care, most of which is provided by me. He also has caregivers whom we hire. We do Home Dialysis four days/week; I'd like to go for five days - but it's better than the three times/week treatments at the kidney center. Besides, Steve just isn't that "portable."

Because of his long hospitalization and the condition "Critical Illness Myopathy/Polyneuropathy," Steve has limited muscle movement. He cannot turn over in bed. He cannot stand or walk. He cannot get to a sitting possition unaided. He can feed himself, and - thank God - he can operate the TV remote!

How long will it take for the condition to lift? How much funtion will he get back?  There are no answers here.

But, there's no doubt about it: he is improving. And the improvement seems faster at home!

We are just grateful he is alive; he came perilously close to dying on too many occasions on this four-month hospital stint. But we experienced medical excellence on the parts of many physicians. Most notably, heart surgeon Joseph Teply, MD, and electrical engineer-turned-anesthesiologist Brad Tupper, MD. Unbelievable tenacity from those two shepherded Steve through two surgeries that teetered way too close to the edge for my comfort level.  Steve had many complications, including acute cholecystitis (infected gall bladder), sepsis, and then "Critical Illness Myopathy/Polyneuropathy."

Now we are left with our old "friendly" dragons: diabetes and End Stage Renal Failure. Would we have ever anticipated that dialysis would become "ho-hum?"

The transition to the Lake Forest Park home was made through the grace of an army of "elves:" those who helped with the move and garage sale at the Bainbridge home, those who designed and updated the Lake Forest Park home, and the many friends who came, called, and generally supported Steve's transition.

We owe a special debt to:

• Jane McClure (co-author with me of "Arrangng Your Life When Dialysis Comes Home: The Underwear Factor") who designed the space from already workable to extraordinary
• Suzi Spinner who helped with all aspects of the project
• Carole Williams who helped with everything
• George Mead, who helped with designer installations and provided wonderful workmen to help
• Bob Ness, Lucia and Pete Handel, Debbie and Lenny Mickelson, Pete and Deanna Howell, Tim Franklin, and Brita Williams who worked on the garage sale extravaganza.
• And others, whose contributions I have undoubtedly omitted - my sincere apologies.

We were astonished and humbled when Smiley Thakur, MD - Steve's nephrologist in the community - made a Home Visit. What encouragement he provided!

So we're back on land, I guess. And happy to be here. For me, no more ferry commute; for Brita, a more poignant transition to a new school. But, she's been a trooper about it. We are all doing "what has to be done." And we'll make it work.

Take care. Linda Gromko, MD

The New Fistula Works!

As we prepare for going home with Steve on July 12, we have been planning to restart Home Hemodialysis after his four month stint in the hospital. The big question was this: Would Steve's brand new fistula be ready to use? Steve, like many diabetics, has had some difficulties with fistulas in the past.

But after two surgeries to create it, the upper arm fistula now has a robust "thrill" - that familiar vibratory sensation you feel when you lay your fingers across a healthy fistula. A "thrill" or "bruit" confirms underlying blood flow and turbulence. A fistula, after all, is created by surgically connecting an artery to a vein - to make that vein grow large enough and sturdy enough to accommodate a blood flow as high as 400 ml/min!

The Dialysis Team had agreed to initiate Steve's "virgin" fistula while he is still in the hospital. If this process went well, we could possibly leave the hospital without his internal jugular catheter (the central line in his neck). This would be enormously significant, as it would remove one more potential source of infection and simplify Steve's home care.

They also agreed to have me do today's puncture. If you haven't seen one, a 16 guage sharp needle looks like a speer. You can see down the inside of the barrel! Remember that a guage of 16 means it's one-sixteenth of an inch in diameter!

So, with nerves on notice, I injected two small wheals of lidocaine, and plunged in the two 16-guage needles. Success! The blood flowed easily, and the run went well. I believe that the process will come back to us - like riding a bike, sort of.

The best thing about all of this is that in Steve's somewhat extreme case, he will able to take advantage of all the positives of Home Dialysis:

• One person doing the punctures - me!
• The comfort of home
• The control of being at home
• No transportation to the kidney center (which we'd have to pay for out of pocket)
• No "institutional" risk of MRSA
• No exposure to technicians who may be less careful about their jobs (we know they are rare, but they do exist!
• Flexibility for our already stretched schedule
• More contact with friends and family who visit Steve during his treatments
• More frequent, gentler dialysis
• More effective dialysis

And on and on....

We are continually grateful to have Home Dialysis as an option. What a relief for our family! And what a true miracle this is!

Take care. Linda Gromko, MD

Preparing for the Giant Leap of Faith

After four months in the hospital, we are working to get Steve home! But not so fast...

Steve's latest challenge - in addition to his End Stage Renal Disease requiring Hemodialysis - is Critical Illness Myopathy/Polyneuropathy. Briefly, this means that Steve is waiting for his muscles and nerves to "wake up" from the effects of his lengthy post-operative course, and then his cholecystitis complicated by sepsis! In more practical terms, this means that Steve cannot sit up, stand, walk, or even roll over in bed.

But, day by day, he is making progress in his core strength and range of motion. And he can feed himself, use the phone, and perform basic grooming.

Here's the big "catch:" he's running out of Medicare-covered days. In fact, he's into his sixty-day lifetime reserve!

No skilled nursing facility will take him - and I wouldn't want that anyway! We looked at a wonderful Adult Family Home, but the cost was completely out of pocket - and Steve would have to go to the kidney center for dialysis; again - transportation to and from would not be covered.

The default position - and we believe the best option - is going home with 24-hour-a-day care. And our goal is July 12!

So, here's our worklist:

• Steve must make as much physical progress as is humanly possible between now and July 12.
• Steve's new fistula must work well enough for us to use it at home for Home Dialysis - otherwise, we must continue to use his central line with its potential for infection.
• We move to a fully wheelchair accessible rental on July 9 - miracle; no ferry commute!
• I have arranged for a rolling shower chair to join the hospital bed, Hoyer Lift, and wheelchair which arrive on July 8.
• Steve and I meet with a home care agency to discuss the care needs that we will pay for out of pocket (Medicare doesn't cover this, even though they would have covered a nursing home - if one had accepted Steve!)
• I find a new gym.
• We move Steve to the Lake Forest Park rental on July 12 - to begin home care, and restart Home Hemodialysis!

And, Jane McClure and I will take a break on July 11 to debut our seminar, "Arranging Your Life When Everything Goes to Health!" at the Bainbridge Island Library from 1-4 pm. Do come if you can; registration is $25 at the door, but scholarships are available.

So, we are in the middle of an interesting time. Clearly, it's a new chapter. We have hope. We have more time. And best of all, we are going home.
Take care. Linda Gromko, MD

Steve Makes a Break for It!

In the hospital since March 2, 2010, Steve's got cabin fever! He's making good progress. We are hoping to get him home in July. But Steve apparently tried to escape!!

.

Here are the photos and comments of George Mead, Steve's very long-term friend (and the son of my junior high math teacher!). In the first photo, we see Steve with one of his Physical Therapists, Kelli.

As George says (all in fun), "Kelli does her best to keep Steve in her life, but Steve needs his freedom. He does his best to let Kelli down gently."

(Likely story!)

In the photo at left, George says, "Steve jacks up his courage with an unauthorized beverage. To the untrained eye he's just enjoying the passing scene at the Starbucks center at Providence Hospital. He's very close to an unguarded door."












Then, in the final photo below, George writes,

"CODE PURPLE! Steve is outside for the first time since March 2nd, 2010. His cover story is that he's a tourist who accidentally mistook the hospital for a museum.

His sister Carole lends an authentic touch as Steve mingles undetected in the outdoor plaza. It's worth noting that Seattle enjoyed its first warm day [above 75º] since September 2009. It's also worth noting that Steve isn't fully in control of his middle right hand fingers."

Steve, we can't wait to get you home!!!

What a journey! Thanks, George, for the photos and text.

Take care. Linda Gromko, MD