Brita and I paid a visit this evening to the Lake Forest Park Fire Department. These are the folks who came to assist Steve on a number of occasions - I think at least four times over a period of nine months.
We made up a gift basket of nuts, trail mix, and candy from Costco. Not from the recommended diabetic-renal diet, to be sure, but treats that might help our helpers get through a night.
I remember one evening when Steve was having severe left arm pain during a Home Dialysis run. I called 911 because I was worried that Steve's pain might be cardiac in origin. Hemodialysis can look daunting: blood running through large-bore tubing, alarms sounding. It wasn't the dialysis I was concerned about; that was handled! I finished getting Steve unhooked from the machine and the medics took over.
Another night, the firefighters helped us get Steve up our steep driveway in his wheelchair - in the snow!
And, of course, there was the unimaginable morning of April 13 - when the medics transported my unresponsive Steve to the hospital, with Steve descending into cardiac arrest on the way. I was so grateful that the medic phoned me (in my car following behind) - verifying that I wanted no further intervention. I think years ago, full intervention would have occurred without question.
We are grateful for these well-trained, good natured firefighters and paramedics who have helped our family on numerous occasions. Thank you for making such troubling situations more tolerable.
Take care.
Linda Gromko, MD
Since Steve died, I've had requests on how to get ahold of the book I wrote.
Order "Complications: A Doctor's Love Story," through www.LindaGromkoMD.com. A Kindle version is also available on Amazon.com.
"Complications" covers Steve's first year of renal failure - there's a lot of medical content, but I wrote it to be understandable for those who don't speak "medicine." It also covers our first meeting, our love story, our creation of a new family in midlife. The chapter on Brita is my personal favorite!
"Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor'" is clearly written for a niche of folks who urgently need a practical step-by-step guide. Co-authored by Interior Designer Jane McClure, this book helps people maintain their homes and lives - performing critical medical treatments at home while not feeling like you live in an ICU! It can also be ordered through http://www.lindagromkomd.com/, with a Kindle version available on Amazon.
Thank you for your interest.
Take care.
Linda Gromko, MD
Steve's nephrologist, Dr. Smiley Thakur, called after Steve died. We talked about Steve's final days, and the many difficulties Steve had endured over the past three years.
On the morning Steve actually died, I had called Medic One. Steve was essentially unresponsive. The paramedics asked if I wanted him intubated (i.e. on a ventilator) if his condition deteriated on the way to the hospital. I declined intubation - should that be considered. En route to the hospital, the lead paramedic called me to clarify that I wanted no further intervention, as Steve had just gone into cardiac arrest.
While Steve had always been a "full code," i.e. full emergency intervention, his situation had clearly changed. As his Durable Power of Attorney for Health Care, I knew that Steve didn't want to go on if his quality of life were even more severely limited.
He wanted to go "when the banter stopped."
Steve had every conceivable intervention possible over the past three years: a kidney transplant which failed - leaving him with a wound that could have admitted a housecat into its depth, a major open heart surgery, sepsis, critical illness myopathy, gangrenous toes, a leg amputation.
Dr. Thakur commented, "You know the difference: when you're doing things to him, rather than for him. You saw that, and made the right call."
Steve's home care was complicated. His blood sugars could vary from 30 to 300 in the span of a day.
And, of course, we did Home Dialysis - both hemo AND peritoneal dialysis. Because of Steve's impaired blood circulation, blood pressures were unreliable. And weights couldn't be obtained because of his mobility problems. So, we'd make an assessment of his volume status by using the cues we had: his appearance, his edema, thirst, how he felt. I could estimate his fluid status by checking the places in his body where fluid gathered. I so remember how the hospital residents would check his legs for this - but the fluid wouldn't be there. When he was fluid overloaded, he'd collect edema in his neck, his arms, his back.
With none of the conventional means to evaluate Steve's volume status, we were left to the most basic tools: good clinical observations.
In my opinion, these were the "heroic measures."
Steve's medical condition was far too complex to be "typical" of a home dialysis patient. Yet, dialyzing Steve at home meant far more normalcy in his life. I will never regret the decision we made to pursue this; it gave his final years far more dignity - and far greater contact with his family and friends.
I am also immensely grateful to Dr. Thakur for supporting our home dialysis care. It took courage on Smiley's part, too.
Steve's obituary is posted on http://www.legacy.com/.
Take care,
Linda Gromko, MD
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
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/
"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
