Steve had a rough two weeks. After a period of struggles with high arterial pressures on Home Dialysis, we suspected that his right upper arm fistula had become stenosed or narrowed. A fistulogram confirmed this, and Steve had an angioplasty to open the narrowed portions.
Access had become particularly critical, as we had learned that both internal jugular veins were narrowed and could not admit temporary central lines!
For this reason, Steve went on to have vein mapping - and the first of the two-part surgery to "install" a new fistula in the left upper arm. But a day or two later, his left hand was cool, numb, and pale - and his movement was impared.
The new fistula was "stealing" blood from the hand downstream, so Steve underwent a bypass graft to re-vascularize the hand - while still maintaining the new fistula.
All in all, there were three surgical procedures in eight days - with sedatives and narcotics for pain control. I had observed before that it seems to take a while for Steve to "clear" such necessary medications. For a day or two, he would be a bit "loopy" - not always tracking clearly, and sometimes frankly bizarre in his thought processes.
This time, the altered mental status persisted longer: for a period of about a week. When it didn't clear, I worried that we might be missing something - he had been mentally "off" when septic earlier in the year. Perhaps he was underdialyzed - repeating the uremic encephalopathy that had terrified me when he was first diagnosed with Acute Renal Failure in 2007. The ER labs confirmed that dialysis was on track, and a head CT confirmed that Steve had not had a stroke.
This afternoon, while discussing the intricacies of Philly Cheese Steaks with one of the nurses, it was clear that Steve was starting to surface. A little beat up, perhaps, but coming back.
Of all the variations we've witnessed in this journey, Altered Mental Status has been the most frightening. We are enormously relieved that this seems to have been temporary - probably the cummulative effect of medications over a relatively short time.
Tonight, I am relieved to have Steve back.
Take care. Linda Gromko, MD
Thursday, August 26, 2010
Monday, August 23, 2010
If You Qualify, Join the NxStage Users Group...
Talk about an elite membership! If you are a NxStage (Home Dialysis Machine) user or CarePartner, you might want to know about this group. I just joined as a CarePartner.
Go to Yahoo.com, then Yahoo Groups, then NxStage Users Group. If you qualify, you may then become a member of the NxStage Users Group. It's not run by the NxStage company. It's run by consumers who use the machines on a regular basis.
Then, follow the members' conversations: "I had a problem with my fistula..." or "How do we take blood pressures when there are fistulas in both arms?" or "Do you know of a center that promotes Nocturnal Dialysis?"
The best thing about this forum is that solutions are offered by people who know! People who know how to build a bandage bridge at the point of access to reduce a chronic Red #24 Alarm. People who know what it's like to have the whole operation primed and ready to go, only to have to restart due to a technicality! And people who really understand that access protection is paramount.
I'm not trying to imply that others can't help; they do! But when I call a help-line and am asked "Does this call pertain to a Home Dialysis patient?" I know in my bones that the operator has probably NOT struggled with an arterial pressure that suddenly reads >400! And when asked at the national center, "What state are you calling from?" It's a stage of urgency - bet on it!
Does this invalidate the advice of Dialysis Nurses, physicians, and others? Not at all. But it's good to remember how self-help groups of all sorts came to be. The people in the know - the "end users" are the front-line experts.
Take care,
Linda Gromko, MD
Go to Yahoo.com, then Yahoo Groups, then NxStage Users Group. If you qualify, you may then become a member of the NxStage Users Group. It's not run by the NxStage company. It's run by consumers who use the machines on a regular basis.
Then, follow the members' conversations: "I had a problem with my fistula..." or "How do we take blood pressures when there are fistulas in both arms?" or "Do you know of a center that promotes Nocturnal Dialysis?"
The best thing about this forum is that solutions are offered by people who know! People who know how to build a bandage bridge at the point of access to reduce a chronic Red #24 Alarm. People who know what it's like to have the whole operation primed and ready to go, only to have to restart due to a technicality! And people who really understand that access protection is paramount.
I'm not trying to imply that others can't help; they do! But when I call a help-line and am asked "Does this call pertain to a Home Dialysis patient?" I know in my bones that the operator has probably NOT struggled with an arterial pressure that suddenly reads >400! And when asked at the national center, "What state are you calling from?" It's a stage of urgency - bet on it!
Does this invalidate the advice of Dialysis Nurses, physicians, and others? Not at all. But it's good to remember how self-help groups of all sorts came to be. The people in the know - the "end users" are the front-line experts.
Take care,
Linda Gromko, MD
Sunday, August 15, 2010
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
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
Wednesday, August 11, 2010
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
"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
Wednesday, August 4, 2010
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
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
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