OMG - What should we think about this? This is our Medicare dollar at work!
Well, I'm delighted that Steve is working on his "Bed Skills!" He's making progress!
Here's the story: when Steve came home from the hospital in 7/2010, he had to be moved from bed to wheelchair via Hoyer lift. He couldn't transfer himself in any way. He really couldn't sit up by himself. He couldn't turn over, or scoot up in bed. He was fully disabled with "Critical Illness Myopathy," - a little known and less understood phenomenon which impacts people after severe illnesses. It hits people who've been on a ventilator for a while, those who've had a major surgery, those with sepsis, those with serious cardiac or renal disease. Check all of the above.
Steve wasn't paralyzed; just exceedingly week. And it wasn't a matter of volition; his body just couldn't do the things he asked.
Steve was further impacted by a fistula surgery which compromised the blood flow to his hand and resulted in a median nerve injury. His left hand became practically useless.
Our bedroom is functional - but it is really more like a dorm room. Steve's in a hospital bed, and I'm in a daybed. This is very useful for the nursing tasks we must perform many times a day.
While I know this sounds like an utter luxury given the overall scope of troubles in the world, I'd really like to sleep with my husband. And two big people in a single hospital bed isn't very comfortable.
When Steve acquires "bed skills," i.e. scooting, rolling over (like a four-month-old does), we can bring in the big bed from the garage and sleep like a couple.
We haven't done this since Steve went into the hospital on March 2 - just about a year ago. A year ago, when all of our lives sommersaulted into such chaos and uncertainty. When Steve's dying would have been the assumed and logical outcome of his continuing series of nightmares.
But Steve didn't die. He's coming along, little by little. And while I've been told that "you get what you're going to get back after a year of Critical Illness Myopathy," I've got my money on him yet.
In spite of everything, Steve's mind is still exceptionally sharp - probably a mixed blessing. My son Tim - who serves as one of Steve's caregivers - bought a new Trivial Pursuit game. And Steve can beat us all!
But then, Steve could have lost a few hundred thousand neurons in all his events and still have plenty to spare! Amazing.
Take care,
Linda Gromko, MD
Saturday, February 26, 2011
Thursday, February 10, 2011
Peritoneal Dialysis Brings Steve Some Benefits; Will They Last?
Steve had a rocky start with Peritoneal Dialysis - with worrisome volume overload and wide blood sugar swings.
But now that we've settled into it a bit and ironed out a few math problems, PD looks very encouraging.
Here's what we're noticing:
1. It's so easy, compared to Home Hemodialysis. Particularly compared to Home Hemodialysis with chronically challenging fistula access! (All those stenoses requiring periodic angioplasties!)
2. It's done daily, which has to mimic actual kidney function more closely.
3. Steve feels better! This week, he started Outpatient PT and OT, so this new energy level will be much-needed.
4. Steve's appetite has returned, and interestingly enough, food has begun to taste better. On hemodialysis, Steve said that chicken tasted like cardboard. He'd say he'd eat "from memory." Now, he says that food tastes the way it's supposed to taste.
It may be premature, but we are very hopeful that Peritoneal Dialysis will continue to encourage. We are glad to have moved from Hemodialysis to PD - and not the reverse! This technology is much more user-friendly, and conducive to CarePartner sleep!
Since our "filter" is now a living membrane, i.e. Steve's peritoneum, it's not as reliable as a manufactured dialysis filter. Will dialysis via PD provide adequate dialysis?
Will he run into later complications or peritonitis?
Most critically, will PD buy us enough time to potentially gain Steve enough rehab - and give him enough mobility to become a kidney transplant candidate once again?
Take care,
Linda Gromko, MD
But now that we've settled into it a bit and ironed out a few math problems, PD looks very encouraging.
Here's what we're noticing:
1. It's so easy, compared to Home Hemodialysis. Particularly compared to Home Hemodialysis with chronically challenging fistula access! (All those stenoses requiring periodic angioplasties!)
2. It's done daily, which has to mimic actual kidney function more closely.
3. Steve feels better! This week, he started Outpatient PT and OT, so this new energy level will be much-needed.
4. Steve's appetite has returned, and interestingly enough, food has begun to taste better. On hemodialysis, Steve said that chicken tasted like cardboard. He'd say he'd eat "from memory." Now, he says that food tastes the way it's supposed to taste.
It may be premature, but we are very hopeful that Peritoneal Dialysis will continue to encourage. We are glad to have moved from Hemodialysis to PD - and not the reverse! This technology is much more user-friendly, and conducive to CarePartner sleep!
Since our "filter" is now a living membrane, i.e. Steve's peritoneum, it's not as reliable as a manufactured dialysis filter. Will dialysis via PD provide adequate dialysis?
Will he run into later complications or peritonitis?
Most critically, will PD buy us enough time to potentially gain Steve enough rehab - and give him enough mobility to become a kidney transplant candidate once again?
Take care,
Linda Gromko, MD
Saturday, February 5, 2011
The Kidney Community Celebrates the Life of Ted Lomax
This week I received an email from Gloria Lomax. Her beloved husband of nearly 58 years had "come home to go HOME." With family surrounding him, Ted Lomax passed away at the family home on February 2, 2011.
I knew Ted only vicariously, through my dear "penpal," Gloria. Through his obituary, I learned that Ted had helped raise his three siblings after his father's death when Ted was only nine. He worked for seven summers at Mount Rainier National Park during high school and college, and served in the US Army Air Corp. He was trained as an aeronautical engineer, earning UW bachelors and masters degrees. He was to meet his future wife Gloria at the UW, where Gloria majored in home economics. Ted Lomax worked at the Boeing Company as a structural loads engineer for 40 years. He authored a textbook "to bridge the gap beween historical structural loads applications and modern design." After retirement, he worked as a consultant for Aviation Partners until April 2010. Deeply committed to his faith, Ted was a leader in his church community as well.
What the obituary didn't mention was that Ted's very full life had been complicated by kidney failure and the need for kidney dialysis, beginning in October 2000. The couple trained in Home Dialysis in July 2002, and did home treatments until Ted's recent hip fracture prompted his move to a Skilled Nursing Facility.
Steve and I had the honor of meeting Gloria Lomax at the Northwest Kidney Centers' Breakfast of Hope in May 2009. Steve was sporting a "wound vac," an odd little device that helped him heal an enormous wound left by a failed kidney transplant three months before. We were back on Home Dialysis once again, and desperate for any encouragement the Breakfast of Hope might provide.
So we met this elegant, graceful woman in her late seventies who had commandeered Home Dialysis for years - getting only a little assistance from a granddaughter who'd stop by to hang the dialysate bags each day.
I was so inspired by this woman who took the challenges of Home Dialysis in stride - calmly doing it because she could, and because it was the best thing for Ted.
I especially appreciated Gloria's descriptions of times when Medic One had to be called. (It's a singular moment for all parties when the medics come. For all their skill and expertise, Home Dialysis can make even the most seasoned firefighter stop in his/her tracks!) I can just see Gloria on the phone with the Northwest Kidney Centers RN, delivering Ted's blood back to him while the Medic One crew administered oxygen. What courage Gloria had through all of this!
Since meeting Gloria at the Breakfast of Hope in 2009, Steve has been on his own medical rollercoaster, with multiple surgeries and multiple complications. I updated friends on Steve's condition through this blog as well as more personal emails to his more intimate circle of pals.
Gloria was on our email list as Steve's medical updates were disseminated. And it was Gloria who consistently spoke to me in the compassionate language of one who truly, truly understands.
She appreciated - as I did - "the comfortable time in between crises." Who else could know this so personally?
In our continuing correspondence, Gloria shared with me that Ted was declining. And when she wrote that he had passed, she expressed her relief that her beloved no longer suffers. Her faith is strong; the support of friends and family is sturdy.
But I ache at her loss as deeply as I respect her strength and wisdom.
The Memorial Service for Ted Lomax will be held Sunday, February 6 at 3:00 pm at John Knox Presbyterian Church in Normandy Park. In lieu of flowers, memorial gifts may be designated to John Knox Presbyterian Church (109 SW Normandy Road; Seattle, WA 98166) or to The Northwest Kidney Centers (PO Box 3035; Seattle, WA 98114).
Take care,
Linda Gromko, MD
Addendum: Read "Caregiver Profile: Mrs. Gloria Lomax" on this blog, November 17, 2009.
I knew Ted only vicariously, through my dear "penpal," Gloria. Through his obituary, I learned that Ted had helped raise his three siblings after his father's death when Ted was only nine. He worked for seven summers at Mount Rainier National Park during high school and college, and served in the US Army Air Corp. He was trained as an aeronautical engineer, earning UW bachelors and masters degrees. He was to meet his future wife Gloria at the UW, where Gloria majored in home economics. Ted Lomax worked at the Boeing Company as a structural loads engineer for 40 years. He authored a textbook "to bridge the gap beween historical structural loads applications and modern design." After retirement, he worked as a consultant for Aviation Partners until April 2010. Deeply committed to his faith, Ted was a leader in his church community as well.
What the obituary didn't mention was that Ted's very full life had been complicated by kidney failure and the need for kidney dialysis, beginning in October 2000. The couple trained in Home Dialysis in July 2002, and did home treatments until Ted's recent hip fracture prompted his move to a Skilled Nursing Facility.
Steve and I had the honor of meeting Gloria Lomax at the Northwest Kidney Centers' Breakfast of Hope in May 2009. Steve was sporting a "wound vac," an odd little device that helped him heal an enormous wound left by a failed kidney transplant three months before. We were back on Home Dialysis once again, and desperate for any encouragement the Breakfast of Hope might provide.
So we met this elegant, graceful woman in her late seventies who had commandeered Home Dialysis for years - getting only a little assistance from a granddaughter who'd stop by to hang the dialysate bags each day.
I was so inspired by this woman who took the challenges of Home Dialysis in stride - calmly doing it because she could, and because it was the best thing for Ted.
I especially appreciated Gloria's descriptions of times when Medic One had to be called. (It's a singular moment for all parties when the medics come. For all their skill and expertise, Home Dialysis can make even the most seasoned firefighter stop in his/her tracks!) I can just see Gloria on the phone with the Northwest Kidney Centers RN, delivering Ted's blood back to him while the Medic One crew administered oxygen. What courage Gloria had through all of this!
Since meeting Gloria at the Breakfast of Hope in 2009, Steve has been on his own medical rollercoaster, with multiple surgeries and multiple complications. I updated friends on Steve's condition through this blog as well as more personal emails to his more intimate circle of pals.
Gloria was on our email list as Steve's medical updates were disseminated. And it was Gloria who consistently spoke to me in the compassionate language of one who truly, truly understands.
She appreciated - as I did - "the comfortable time in between crises." Who else could know this so personally?
In our continuing correspondence, Gloria shared with me that Ted was declining. And when she wrote that he had passed, she expressed her relief that her beloved no longer suffers. Her faith is strong; the support of friends and family is sturdy.
But I ache at her loss as deeply as I respect her strength and wisdom.
The Memorial Service for Ted Lomax will be held Sunday, February 6 at 3:00 pm at John Knox Presbyterian Church in Normandy Park. In lieu of flowers, memorial gifts may be designated to John Knox Presbyterian Church (109 SW Normandy Road; Seattle, WA 98166) or to The Northwest Kidney Centers (PO Box 3035; Seattle, WA 98114).
Take care,
Linda Gromko, MD
Addendum: Read "Caregiver Profile: Mrs. Gloria Lomax" on this blog, November 17, 2009.
Sunday, January 30, 2011
What a Difference Quality Care Makes!
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:
Linda Gromko, MD
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.
Linda Gromko, MD
Tuesday, January 25, 2011
A Hospital "Holiday"
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
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
Sunday, January 23, 2011
Fluid Overload Scraps our Date and Brings Back Temporary Hemodialysis
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
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
Friday, January 21, 2011
Peritoneal Dialysis Begins With a Few Hitches
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
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
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