Stephen M. Williams (8/16/49-4/13/2011)

There's a vacant spot in my heart today as I announce Steve's death. He fought so hard against every health calamity, we always expected he'd land on his feet once again - or foot, as it happened after his recent amputation.

We brought him home from the hospital on Monday, April 11. He slept comfortably through the night, happy to be home. Tuesday was a rough day with a great deal of pain. After we finally got his medications squared away, he said to my son Tim and me,

"I thought I was supposed to die yesterday."

I asked him what he meant, to which he just shook his head. Then I asked him if he needed to go back to the hospital. Steve's eyes got wide.

"No, they won't let you die in the hospital."

The next morning, Steve was markedly less responsive. On the Medic One ride to the hospital, Steve went into ventricular fibrillation. He died on the way; no more measures were needed. Steve had had enough. I suspect he'd had a stroke in the night, or maybe a heart attack. I don't even really know, and it doesn't even really matter, I suppose.

For anyone who might question, Steve gave out. He never gave up.

So now, we plod along, going through the process of grieving and adjusting. For me, the problem is that every molecule, song, word or purpose is connected to Steve.

I never loved anyone the way I loved Steve. And there is no doubt in my heart that he loved me deeply.

We will have a party sometime; he wasn't a funeral kind of guy. We'll place an obituary in the paper.  For anyone so inclined, rememberences may be directed to the Ingersoll Gender Center, Planned Parenthood of Seattle-King County, or charity of choice.

Take care.
Linda Gromko, MD

Amputation Puns and Drug Delirium

When Steve got back to his hospital room after his Below-the-Knee Amputation on Thursday, he looked, well - "perky." He was relieved, lucid; he greeted friends with ease. When our kids, Brita and Tim, delivered an oversized pink "contented cow" balloon, he was cordial and "appropriate" - if such a thing exists for a man who has just lost a leg.

He had had a spinal anesthesia, and wasn't keen on the experience of hearing the reciprocating saw and smelling the aroma of full-on cautery. But he was mentally "there."

The next day brought plenty of narcotics - necessary, of course, to dull the intensity of bone pain. But we have all learned that Steve doesn't do well - mentally - with narcotics. He gets delirious. Fortunately, it's an entertaining delirium; he's never mean or cantankerous. And it's temporary.

In the early hours of Saturday, Steve was not only delirious - his temperature was climbing. He has demonstrated florid mental status changes in the past with sepsis (infection in the bloodstream), so this was clearly a concern.

Therefore, I understand why the doctor-on-call ordered Narcan - the medication which reverses the effect of the narcotics. It was important to know if Steve was loopy because he was drugged or because he was getting really sick with an infection.

The Narcan popped the fluffy cloud of relief on which Steve had been floating, and slammed him into a wall of screaming pain. It was awful.

Furthermore, Dr. "Narcan" had then ordered Dilaudid - a drug on which Steve has had notoriously bizarre behavior. I asked to have the order changed to morphine, but the doctor couldn't be reached. After an hour, I couldn't take it anymore. I said, "Give him the Dilaudid."

Two years ago, after Steve's failed kidney transplant, Steve got Dilaudid.

"Are there salmon swimming up my back?" I remember him saying. Later, his friend George's head was completely replaced by the head of George's cocker spanial, Lady.

Like I said, they were entertaining little hallucinations, but bothersome nonetheless.

As soon as the Dilaudid was injected this time, Steve grinned instantly.

"Is that a salmon?" he asked.

The rest of the day and night was spent in various degrees of awareness, as Steve's drugs were manipulated.

His response to it all? "I'm on a wild goose trail. I'm taking a monkey out of a can."

Steve, my brilliant raison d'etre, is clearly at his best with a mind. I'm waiting for it to come back.

We'd already started on the bittersweet amputation puns. "Steve's landed on his foot once again!"

And, after all, I'm still in love with this man - head over heel.

Take care.
Linda Gromko, MD
see also http://www.rowingthroughthewinter.blogspot.com/

Waiting for Steve's Amputation

"All things considered," as Steve often says, we've been doing reasonably well. He was admitted to the hospital briefly in March for the family respiratory infection: probably a viral pneumonitis. While it hung on for a while, Steve has made excellent progress.

We'd been back to our weekly dates of dinner and a movie via Access bus. On one such trip - March 13 to be exact - Steve had an elevator door close on his left foot. That night, I discovered a quarter-sized blood blister on his left big toe. Since I dress him, I know it hadn't been there before; it was an elevator bite!

Steve had a routine podiatry appointment scheduled for the next day; he has had a tiny stasis ulcer on his left middle toe for many months. The podiatrist looked at Steve's feet and referred him to the wound care center. A vascular mapping ultrasound had already been scheduled, ironically, before the elevator incident.

In the two to three days before the mapping exam, Steve's left foot worsened considerably. The big toe and the two adjacent toes were rapidly turning black.

When Dr. Watson, Steve's vascular surgeon evaluated him on March 30, he said, "The leg will have to go."

An amputation! We've always known that a stubbed toe in a diabetic could lead to an amputation. But here we were - discussing Steve's amputation! A below-the-knee amputation would afford a greater possibility of walking sometime in the future.

And walking allows for the possibility of another kidney transplant even further down the road. Steve is simply not ready to let that opportunity go - at least not now.

So Steve is in the Operating Room, and I'm writing. Support from friends has flowed in; so have all the intentional and unintentional amputation puns.

I believe he will get through this surgery fine. An hour-and-a-half case! Barely time for a cut, color and perm!

But the implications are weighty. Mortality figures for renal failure patients with amputations run over 50% during the year of amputation. Of course, most of that mortality is attributable to cardiovascular causes. Steve's heart has been practically rebuilt, and he's had no new symptoms of worry.

But we do worry, of course. Steve and I have framed this new development as the beginning of a new chapter. Steve's Rehab specialist, Dr. Tempest, underscored only yesterday the vast improvements he's made since his visit in October.

We're in there. And if there's one thing that has proved itself again and again, it's been the strength and resilience of Steve Williams.

Take care,
Linda Gromko, MD

Hypnotherapy Calms Steve's Breathing and Brings Better Sleep

As a resident physician at the University of Washington, I received basic training in the techniques of hypnotherapy. I went on for more training in this area, and have practiced it intermittently with my patients - as an adjunct to smoking cessation, weight loss, and other significant challenges.

Steve has struggled with poor sleep for years, and medications to help have been met with variable results. Medications which leave him "drugged" or "groggy" don't seem to do him any favors - and we are mindful of  adding anything to his already full pharmaceutical menu.

With the recent respiratory infection Steve encountered, he experienced full-blown wheezing. Even after his hospitalization - and the pulmonary treatments - and the steroids - and the antbiotics, his breathing sounded like a creaky, poorly-oiled machine. As an asthmatic, I understand intimately the discomfort of constricted breathing. It takes so much effort to pull in and force out each wheezy breath.

So, I tried a hypotherapy technique to get Steve to sleep and ease his breathing. It went something like this:

"Steve, as I count down from 5 to 1, you will experience a deepening of relaxation. As you envision a place in the world that is particularly restful to you, I invite you to focus further on your breathing.

Notice that it is becoming more easy - almost effortless - as cool, clear air moves easily in and out. Your breathing slows as you realize that your breathing tubes are opening ever-so-gently to allow for easier entry of life-giving oxygen. Your body deepens further into relaxation.

Take a moment to receive any message, to take care of any matter you need to before you drift easily into sleep"

---------"I love you, Linda Jo," Steve whispered.

"Excellent. Now slowly, gently drift to sleep through the night without waking. Wake in the morning, relaxed, refreshed, and restored."

Steve drifted off and slept soundly through the night: no coughing, no request to be turned. It was a quiet night in spite of its uncomfortable beginning.

Take care,
Linda Gromko, MD

Steve Gets a Hospital Tune-up

While Steve's respiratory symptoms quieted after the removal of some extra fluid via Peritoneal Dialysis, his wheezing and cough came back in earnest on Sunday. He was tiring out - and getting a little worried about something more serious like pneumonia.

So, rather than our Sunday date, we took a cabulance to Swedish Hospital.

Our whole family had had respiratory viral infections. But with Critical Illness Myopathy/Polyneuropathy, Steve may have more difficulty clearing out secretions. He did have a flu shot earlier in the year.

Steve spent a couple of nights in the hospital, getting antibiotics, bronchodilators, and a blast of anti-inflammatory steroids.

So whether it was an atypical pneumonia or a viral bronchitis, Steve did need treatment, and he felt better after the tune-up.

Breathing is, after all, non-negotiable.

Now that Steve has been in the hospital many times, he recognizes some of the nursing staff as friends.

A'dree-Rose Hollinger, RN - a Dialysis Nurse who has cared for Steve many times, stopped by to say hello. Steve loved her visit. We have a special place in our hearts for A'dree-Rose. She is one of the few nurses we've come across who knows intimately the process of Home Hemodialysis and Home Peritoneal Dialysis. She knows because she was her Grandfather's Home Dialysis helper while she was a student! We have been frequently surprised at how few health care professionals know that dialysis can be done at home - and with some significant advantages.

Tonight, it's nice to have Steve home again. I don't think he's out of the woods with respect to the respiratory symptoms. But we'll keep a close eye on him.

Take care,
Linda Gromko, MD

Returning Home to Find Steve Sick Again

I spent one night in San Francisco - one night for a two-day training event. My son Tim was able to spell me for two of Steve's Peritoneal Dialysis treatments. And with a little coaching over the phone, Tim did great.

But when I walked in the door last night, Steve was audibly wheezing!

Our whole family has had colds. But Steve wasn't clearing his secretions well; I could hear him wheezing across the room.

I gave Steve Combivent treatments and started him working on the Incentive Spirometer - trying to encourage deeper breathing and better "pulmonary toilet."

It's hard to read Steve in the best of circumstances. We cannot get proper blood pressures on him in any consistent manner because of his bilateral arm fistulas and his poor lower extremity circulation. We cannot weigh him at home because of the logistics involved in moving him. Of course, Medicare doesn't cover a bed scale. Critical Illness Myopathy/Polyneuropathy hangs on as a formidable foe.

So we're left to assess volume by his subjective symptoms (e.g. degree of thirst, difficulty breathing) and objective observations of Steve's edema. He rarely gets swelling in his feet, of course; he doesn't walk and he spends most of a day reclining or in bed. 

When he is truly volume overloaded, we see extra fluid around the neck area, the backs of his arms. It's tricky, especially without comparative weights and blood pressures. But we've managed reasonably well thus far. It is - by no means - the usual standard for home dialysis. But Steve's circumstances are unusual.

So I asked Steve's nephrologist about taking him in to the ER to be evaluated. After all, I have no idea about his oxygen level or what a chest x-ray might show.

Dr. Thakur suggested a trial of a Peritoneal Dialysis run using a more concentrated dialysate. If Steve is really volume overloaded, the removal of a net 2 liters or so would be helpful in relieving symptoms. It it didn't, the ER would still be there.

And since Steve didn't look like Medic One material to me, it seemed like a reasonable idea.

Now, as I type, Steve is snoozing soundly - breathing much more comfortably after we tried Dr. Thakur's suggestion.

So far, so good. If this continues, we'll have avoided a costly, difficult afternoon for Steve. And, of course, if things change, we'll make a new plan. But for now, it's a great relief.

Take care,
Linda Gromko, MD

Going Out of Town Brings New Worries

Most of my professional training requirements can be met in Seattle, I do go out of town once in a while. Thursday and Friday of this week, I make a short trip to San Francisco for a training event related to the Weight Loss portion of my medical practice.

I am Steve's primary caregiver. As I write this, he's snoozing through his Peritoneal Dialysis run. But this evening, he's also been given medications; blood sugar has been checked and insulin's been given. I've turned him in bed, cleaned him, and tended to his skin care.

I realize that San Francisco is two hours away, and I leave Steve in many hands. There's my son Tim, who cares for Steve every weekday and coordinates all of his PT/OT and MD appointments. Tim has also been trained in Peritoneal Dialysis. And, of course, he's got the back-up of the Kidney Center nurses. Then, we'll have several hours of other caregivers' time each day for the more personal care.

Well orchestrated, the trip should come off without a hitch.

But here IS the hitch: the last time I left town for two days, Steve was still in the hospital. I came back to Seattle to find Steve delirious with a temp of 101, right upper quadrant tenderness - acute cholecystitis! Back to the ICU - once again.

I appreciate that Steve's health is tenuous enough that anything could tip his delicate balance at any time. So leaving town is nerve-jangling for me.

But, as before, I'm not in control here! I can orchestrate the things I can, and the rest will have to follow.

Take care,
Linda Gromko, MD