For anyone who has relied on hired staff to provide care for a loved one, you've probably heard that "it's a crap shoot!"
When Steve came home from the hospital in July, he required 24-hour-a-day care. (He still does.) We called an agency that could provide Certified Nurse's Assistants. The agency sent two highly qualified young men, both wholly committed to their work, kind to Steve, and respectful.
The cost, however, was prohibitive. We were exhausting our savings, and nibbling at retirement accounts.
We hired another agency - at a lesser cost. One of the women the new agency sent was personable and patient with Steve. She insisted on his getting enough watermelon to keep his digestive system working smoothly. She had a sweet disposition, and we all felt safe.
The other woman, however, was - frankly - frightening. Her judgement was curious, her decisions inconsistent. She would do tasks that were not requested - like cleaning our stovetop, and omit the required duties - like oral care and giving Steve medications from his Mediset. Worse, when called on anything, she became defensive. There was always a reason for her omissions - but they weren't her fault!
The day this odd little woman arrived on a non-scheduled day and locked her keys in her car, I had it. It was time for a change. This woman was simply takng too much work!
Now, we've heard of the nightmare situations where caregivers steal, or treat patients in an abusive manner. Thankfully, we've had none of these horrors.
I went back to the first agency, and begged. Working with fewer hours, we could shave the cost a bit - plus we could rely more heavily on family members.
Meeting the two new caregivers was like a breath of fresh air - accompanied by a sense of deep relief!
So, in this chapter, we learned that:
- You get what you pay for.
- Asking a total stranger into your home is a terriby vulnerable position - particularly when your loved one is so medically tenuous.
- English skills are critical. Most of the caregivers we have met have learned English as a second language. Their ability to speak English is a tribute to their intelligence. But, when a patient is very ill, or doesn't hear well, I wonder what gets lost in the shuffle.
- It pays to be creative, and keep looking til you find a good match.
Take care.
Linda Gromko, MD
When Steve and I went to sleep on Sunday night, we thought the rugged weekend was behind us. Not so fast!
Steve awoke, stating, "I'm sweating; check my blood sugar!"
His suspicions were correct; his blood sugar was only 31! His body was profoundly diaphoretic. I've seen Steve's glucose dip as low as 30. And I had one patient in the E.R. who had a blood sugar of only 8! That patient was unconscious. I didn't want to find out how low Steve's blood sugar could drop.
It wasn't clear to me exactly what was happening. We knew we were using high amounts of sugar in Steve's dialysate solution - so that could have accounted for high sugars he had off and on through the weekend. And that, of course prompted our use of more insulin. Had we overshot, giving him more insulin than necessary? Possibly so, though the pattern was inconsistent.
Arriving in the E.R., Steve looked sick. His responsiveness waxed and waned. At one point, he simply didn't answer our questions. A couple of slugs of IV Dextrose solved that immediately, with Steve returning to lucidity.
While Steve's medical fragility was clear, his capacity for resilience was also demonstrated once again.
And, once again, I felt immensely relieved to hand Steve off to someone else to be responsible! I remember feeling that way three years ago in the same Emergency Room. Steve had just been diagnosed with Acute-on-Chronic Renal Failure. His creatinine rocketed up from his abnormal 4 to a startling 10 in only two weeks. He looked pale, twitchy, and mentally loopy.
I was so relieved to have someone else take the responsibility then, as I was at 3 a.m. Monday morning.
Over the day, Steve looked better. Our mysteries were not all solved; many of my questions remained unanswered. But that sick-in-the-pit-of-the-stomach sense of maybe losing him passed once again. Will it return? Of course. I'm optimistic, but not naive. This is not a pleasure trip. This is real life, and real love.
By the way, Steve and I just celebrated our third wedding anniversary. We recognize the significance of this milestone, and, yes, it seems like we've been partners for many more years than seven!
Happy Anniversary, Stephen...my "raisin" (as in "raison d'etre")! I love you with all my heart.
Take care,
Linda Gromko, MD
If there's anything that Steve and I look forward to, it's our Sunday outing for a movie and dinner - courtesy of the Metro Access Bus, of course.
But today, our date was cancelled; we had too much medical management to attend to. Specifically, Steve has been accumulating fluid - a lot of fluid - in his torso.
Peritoneal Dialysis adds fluid into the abdomen, contributing to a fullness in the belly that can be uncomfortable.
But this was much more than discomfort. Somehow, Steve was kilos behind on eliminating fluid. While we usually yielded 1500 cc/day, Friday saw only 180 cc! The rest was left to accumulate not only in the belly, but in Steve's neck and back. His breathing was labored. And where movement has been difficult for Steve since his diagnosis of Critical Illness Myopathy, the extra pounds made movement that much harder. Additionally, it was becoming harder for me to move and care for Steve - now about 20-30 pounds over his normal weight, and over a period of just one to two weeks.
The answer - at least for the short term - is additional dialysis. Not only did we add extra Peritoneal Dialysis Treatments; we added a Home Hemodialysis treatment as well!
Steve was a trooper as I sunk the fifteen gauge needles without xylocaine. But the extra treatment probably kept Steve out of the hospital, at least for today.
We understand there are a variety of tricks we can try with Peritoneal Dialysis as Steve equilibrates - and as we understand the kinetics of his peritoneal membrane.
Additionally, we are tangling with the variabilities in blood sugar - made more tricky by the fact that the dialysis solution that pulls off the most fluid is the one with the highest sugar concentration!
Today's blood sugar low was 31! And we treated it with juice - the fluid volume of the juice partly negating the gains we'd made with dialysis.
But, tomorrow is a new day - hopefully, a better day. Hospitalization is not out of the question, as we take this process one day at a time. We are grateful for the coaching of Angela, the on-call PD Nurse, and that of Steve's nephrologist, Dr. Thakur.
Steve and I will schedule that date for next Sunday.
Take care,
Linda Gromko, MD
Last week, Steve and I went to Peritoneal Dialysis Training at the Northwest Kidney Centers' Seattle location. Steve's Home Hemodialysis fistula had been barely limping along; we'd been running into repeated high pressure alarms suggestive of a critically narrowed vessel. I'm certain we made the switch to PD in the nick of time. After all, Steve has no sites available for central line back-up. With no access, there's no dialysis; without dialysis, there's no Steve!
We met with the ever-patient RN Rebecca, who walked us through the nuances of the procedure. Just as with our Home Hemodialysis training, if you read the directions - and don't "freelance," it all goes pretty smoothly. Rather than the five weeks of daily training we had for Hemodialysis, our PD training took only four days - plus a number of phone calls to the on-call nurses afterwards.
We ran into a few hitches along the way:
1. On the first day, Seattle was deluged by a blizzard just as our session was ending. I made it from the central area to Lake Forest Park in forty minutes in my Suburu. Steve, in the Access Bus, didn't get home for several hours. And then, the bus couldn't make it up the snowy driveway. What to do? Call the Fire Department, of course. Digging a path in the snow, a good-humored fire crew hovered over Steve and his power wheelchair as he chugged safely up our slippery hill.
2. At first, our PD formula didn't remove enough fluid. Steve accumulated over 8 pounds in the first 3 days. A change in the recipe resulted in generous fluid removal - but the more concentrated dextrose solution played havoc with Steve's blood sugar.
3. In a single day, Steve's blood sugar ranged from a high of 374 to a low of 41. Daughter Brita managed the hypoglycemic episode with me on the phone, feeding her dad oranges and sugar water.
4. Then, I committed a protocol error in connecting Steve to the machine. And while I really don't think I contaminated the site, the nurses felt it was safest to give Steve a course of intraperitoneal Vancomycin. All because of my venial sin - one that I'll never repeat! Nobody wants to chance peritonitis from an error in technique.
So how does Steve like the new modality? So far, he says, it's too early to tell. But he quickly adds that he doesn't miss the 15 gauge needles, or the sensation of the needles in his arm.
While the treatments are much simpler to do than Hemodialysis, the treatments take longer, and must be done every day.
Steve isn't too keen on the Buddha belly look he has with two liters of extra fluid in his abdomen. He gets bloated and uncomfortable - it's a work in progress.
From my perspective as the CarePartner, PD is less stressful. Blood flowing at 400 ml/minute can be intimidating. After all, that's practically the blood flow velocity of the human placenta. I delivered babies for years, and I've been on the receiving end of several post-partum hemorrhages. That's a lot of blood pouring out at incredible speed!.
As for Steve, it's yet one more adjustment in the process of his renal failure. Hopefully, we'll work out the bugs in the system, Steve will equilibrate, and life will go on. We can already see the greater ease of travel that might be possible with PD. And living in places where power failures are common, we like the fact that PD can be done entirely without electricity.
As with Hemodialysis, Steve and I are in awe of the medical engineering genius involved in dialysis in general, and the further wonder of being able to adapt this technology to home use.
Take care,
Linda Gromko, MD
Last night as I took Steve off "the hose," i.e. our NxStage Home Hemodialysis machine, we both commented,
"Is tomorrow's treatment our last time for Home Hemodialysis?"
Steve has been on Hemodialysis since September of 2007, and we've been doing Home Hemo since January of 2008. We've had a few breaks, of course, with Steve's various hospitalizations - when he'd get dialyzed in the hospital.
We remember so poignantly the last time we thought we were performing our last Home Hemodialysis treatment: it was in February, 2009 - the evening before Steve's kidney transplant.
How expectant we were! And why not? We had a living donor kidney from Steve's neice Teresa - a perfect match. Steve was in reasonably good health - "all things considered," as he says so frequently.
We remember the chilly pre-dawn ferry ride from Bainbridge Island en route to the University of Washington Medical Center, meeting the whole family in the hospital lobby as we all waited for what we thought would be Steve's life-changing miracle.
Of course, we had signed the Informed Consent for Surgery. Many things could go wrong; Steve could die. But the odds were so overwhelmingly good. And infomed as we all were, you simply cannot believe that calamities will occur to you or your loved one.
It wasn't til that afternoon, while I was waiting for Steve to come out of surgery that I knew in my gut something was terribly wrong. It was simply taking too long, and Teresa was already in her hospital room, recovering from her blessed donation.
The surgeon walked into the Surgery Waiting Room, and led me into a small consultation area.
"His blood pressure went down very low for about a half hour," he explained. He went on to say that Steve was "stable," but that the new kidney hadn't "awakened yet."
Steve had had a mild heart attack during the surgery, and went on to have a couple more during his hospitalization. The blood flow to the transplanted kidney had never been perfect. And an attempt to improve it led to a disaster: bleeding from the renal artery into the abdomen!
I will never forget the most heartbreaking night of my life: the night Steve was taken for emergent surgery because of the bleeding - and Teresa's kidney was removed forever, serving nobody.
Steve recovered, as Steve seems to do - conquering the odds and rebounding as few could ever do. But, it was back to Hemodialysis. Our "last Home Hemodialysis" would then be followed by two years of Home Dialysis - with hospital interruptions, of course.
This time, we are moving from Home Hemodialysis to Home Peritoneal Dialysis - the compelling reason being that Steve is fast running out of blood vessel sites. We have to do something.
On Tuesday of this week, we begin our Home Training. It should be easier this time; we are expecting four days of training rather than five weeks. And there's no question about it, Home Dialysis is always preferable to the soul-sucking environment of any kidney center - no matter how nice the location or how wonderful the staff.
So, we begin a new journey - with hope. As for another kidney transplant? Steve still wants one dearly. Our hope is that he can recover enough to become ambulatory again and wow the next Transplant Team for another try.
Take care,
Linda Gromko, MD
We're not terribly big on New Year's Resolutions in our family. My mother, who turns 93 this month, resolves, "Just get up everyday!"
When I asked Steve for his resolutions, his answer was simple,
"I want to walk. I don't care if it's with a walker or other equipment; I just want to walk."
Not such a simple request. With his new electric wheelchair, Steve is undeniably faster at scooting around during our weekly "dates" for dinner and a movie via Access Bus. But the truth is that he still has only one good limb - his right arm. His lower legs have a girth similar to my wrists - and these were the powerful calves that used to push 600 pounds on the leg press! His left arm was injured as a result of a fistula surgery, though it seems to be coming back little by little.
But walking means a better chance of survival and recovery from a Kidney Transplant surgery - and that is Steve's ultimate goal.
Steve asked me for my resolutions.
"Simple," I said, "I want to sleep in a big bed with you."
Since March of last year, Steve has been confined to a hospital bed. It's a requirement, given his mobility constraints and nursing care practicalities.
And while I logically recognize the necessity of the hospital bed, I miss the basic intimacy of sleeping with my life partner.
Next week brings another challenge: learning Peritoneal Dialysis. Because of Steve's limited fistula access - and the absolute lack of central line back-up sites, a new plan is critical. During our last few Home Hemodialysis runs, we've struggled with high venous pressure alarms.
We have only three or four runs to go before starting with the Peritoneal Dialysis training. I think we can limp along until next week.
So, it's a new year with new perspectives. We are grateful for the gifts we have.
Take care,
Linda Gromko, MD
