It’s been a couple of weeks since I posted an update on how my latest schema to control my weight by adjusting the strength of my dialysis fluids so here goes an update:
I have 21 recent days of data to share. During this period, my weight has varied from a low of 143.2 to a high of 147.0. When it reaches 145.0 I use a 2.5% 2-liter bag on my early evening static fill. When it equals or exceeds 146.0 I use a 2.5% 6-liter bag along with a 1.5% 6-liter bag on the Cycler. So far, I have used the 2.5% 2-liter treatment five times, and the 2.5% 6-liter bag four times out of 21. Keep in mind that my assigned dry weight is 145.0 so I’m keeping a tight variance on my weight around this value by adjusting the dialysis fluid strength on the fly.
One of the last tasks I do after coming off of dialysis every morning is to weigh myself. Based on this weight, I determine what mixture of bags of fluid I need to keep my weight where I want it, at or below 145.0. Sometimes I can adjust it a pound or two with just the 2.5% 2-liter bags for my static fill; sometimes I have to use the 6-liter 2.5% bags if my weight jumps too much. But it is working for me.
Keep in mind that the rubric I am using does not take into consideration any weight fluctuation from diet or any effect of exercise. But intrinsically, these are factored into my weight. Again, my weight has responded well to this schema.
On May 28, 2024, in the Opinion Section, WSJ ran an article titled “Bureaucrats vs. Kidney Patients” by The Editorial Board. Below is a 250-word condensed version of the article followed by information from Perplexity on just what the tests are that are highlighted in the article. I previously did not know such tests existed.
In August 2023, the National Committee for Quality Assurance (NCQA) removed an at-home kidney test from its list of approved tests, denying patients an easy way to check their risk for kidney disease. The convenient semi-quantitative test uses a urine sample to measure albumin, an early indicator of kidney problems.
NCQA claims the test was “erroneously misclassified” as a lab test, but this seems like bureaucratic confusion. Both the American Diabetes Association and the National Kidney Foundation have endorsed home tests to improve access, especially for rural patients. Eliminating this option will “take us backward rather than forward,” says Dr. George Bakris, who co-authored the guidelines.
Kidney disease often goes undiagnosed until it has caused substantial damage. Over 37 million Americans have chronic kidney disease, and 90% are unaware. Frequent testing is crucial, especially for the 38.4 million Americans with diabetes, a third of whom have kidney disease. Early detection can prevent the need for dialysis, which costs Medicare over $153 billion annually.
While NCQA acknowledges home tests may play a role in the future, they already serve an important purpose. This decision appears to prioritize cost and bureaucratic control over patient needs. Doctors and patients are now pushing back, arguing that easy access to screening is vital for catching kidney issues early and improving outcomes.
Home kidney test kits can provide a semi-quantitative detection of small quantities of albumin in urine, which is an indicator of potential kidney disease. The Accu-Tell Microalbumin Semi-quantitative Rapid Test Strip is designed to detect albumin levels between 20-100 mg/L by showing varying color intensities on the test strip. Similarly, the Healthy.io Minuteful Kidney kit uses a urine dipstick and smartphone app to rapidly detect albumin levels, though it does not provide detailed results. These semi-quantitative tests can help screen for microalbuminuria, an early sign of kidney damage, but positive results should be confirmed with further quantitative testing by a doctor.
A May 24, 2024 article in The New England Journal of Medicine is of interest to all readers of this blog. The lead graphic is captured from the article which is quoted in its entirety below. You can read for yourself that the intake of Ozempic, largely employed as a weight-loss drug, may have salubrious effects way beyond weight.
Abstract
BACKGROUND
Patients with type 2 diabetes and chronic kidney disease are at high risk for kidney failure, cardiovascular events, and death. Whether treatment with semaglutide would mitigate these risks is unknown.
METHODS
We randomly assigned patients with type 2 diabetes and chronic kidney disease (defined by an estimated glomerular filtration rate [eGFR] of 50 to 75 ml per minute per 1.73 m2 of body-surface area and a urinary albumin-to-creatinine ratio [with albumin measured in milligrams and creatinine measured in grams] of >300 and <5000 or an eGFR of 25 to <50 ml per minute per 1.73 m2 and a urinary albumin-to-creatinine ratio of >100 and <5000) to receive subcutaneous semaglutide at a dose of 1.0 mg weekly or placebo. The primary outcome was major kidney disease events, a composite of the onset of kidney failure (dialysis, transplantation, or an eGFR of <15 ml per minute per 1.73 m2), at least a 50% reduction in the eGFR from baseline, or death from kidney-related or cardiovascular causes. Prespecified confirmatory secondary outcomes were tested hierarchically.
RESULTS
Among the 3533 participants who underwent randomization (1767 in the semaglutide group and 1766 in the placebo group), median follow-up was 3.4 years, after early trial cessation was recommended at a prespecified interim analysis. The risk of a primary-outcome event was 24% lower in the semaglutide group than in the placebo group (331 vs. 410 first events; hazard ratio, 0.76; 95% confidence interval [CI], 0.66 to 0.88; P=0.0003). Results were similar for a composite of the kidney-specific components of the primary outcome (hazard ratio, 0.79; 95% CI, 0.66 to 0.94) and for death from cardiovascular causes (hazard ratio, 0.71; 95% CI, 0.56 to 0.89). The results for all confirmatory secondary outcomes favored semaglutide: the mean annual eGFR slope was less steep (indicating a slower decrease) by 1.16 ml per minute per 1.73 m2 in the semaglutide group (P<0.001), the risk of major cardiovascular events 18% lower (hazard ratio, 0.82; 95% CI, 0.68 to 0.98; P=0.029), and the risk of death from any cause 20% lower (hazard ratio, 0.80; 95% CI, 0.67 to 0.95, P=0.01). Serious adverse events were reported in a lower percentage of participants in the semaglutide group than in the placebo group (49.6% vs. 53.8%).
CONCLUSIONS
Semaglutide reduced the risk of clinically important kidney outcomes and death from cardiovascular causes in patients with type 2 diabetes and chronic kidney disease. (Funded by Novo Nordisk; FLOW ClinicalTrials.gov number, NCT03819153.)
This past Friday I authored a post relating the anxiety, fear, uncertainty, and doubt expressed by many in dialysis forums on Facebook. I related while I did not experience such feelings, perhaps it would be lucrative to delve into what research has suggested. Below is what I uncovered.
Research has found that patients new to dialysis often experience significant anxiety, fear, and doubt. Some key findings:
Anxiety disorders are estimated to affect 12-52% of patients with end-stage kidney disease on dialysis.
Starting dialysis is a major life transition that can trigger anxiety as patients adjust to the new diagnosis, treatment regimen, and lifestyle changes.
Common sources of anxiety include fear of the unknown, uncertainty about the future, invasive procedures like needle insertions, alarms on dialysis machines, and dependence on medical staff and equipment.
Patients may feel anxious about being able to follow the strict dietary and fluid restrictions, remember medication schedules, and manage supplies for home dialysis.
The loss of independence, inability to work, financial strain, and disruption to social roles can contribute to feelings of anxiety and doubt.
Anxiety can make it harder for new dialysis patients to learn important self-care skills, follow treatment plans, and cope with the physical and emotional demands of their condition.
In summary, the transition to dialysis brings many stressors and uncertainties that commonly trigger significant anxiety, fear, and doubt in new patients as they adjust to end-stage kidney disease and dialysis treatment.
Back in the day, I was Officer In Charge of a US Navy Unit stationed at Sperry Systems Management in Ronkoma, NY. Our mission was to test and evaluate a new weapon system designed to go aboard the new Oliver Hazard Perry Class FFG-7. One of the enlisted working for me at that time was a first-class petty officer by the name of Robert Shippee. Fire Control Senior Chief Petty Officer (FCCS) Robert Shippee died in the USS Stark (FFG-31) when she was struck by two Iraqi Exocet missiles on 17 May 1987.. My thoughts always go out to him today with wishes of fair winds and following seas. The lead photo is of him.
For those from other countries reading this blog, the below is offered to provide insight into Memorial Day in the USA:
Memorial Day
Federal holiday in the United States
Origins
Originally known as Decoration Day, it marked the remembrance of U.S. military personnel who died in service
First Observance
The first national observance of Memorial Day was on May 30, 1868
Current Date
Observed on the last Monday in May since 1971
Memorial Day is a federal holiday in the United States that honors the men and women who died while serving in the U.S. military. It originated after the Civil War to commemorate the Union soldiers who perished in that conflict.
Origins and History
The first Memorial Day observance was held on May 30, 1868, originally called “Decoration Day,” when General John A. Logan proclaimed that flowers should be placed on the graves of Union soldiers who died in the Civil War. On that first Decoration Day, General James Garfield delivered a speech at Arlington National Cemetery, and 5,000 participants decorated the graves of 20,000 Union and Confederate soldiers buried there. While the exact origins are disputed, the practice of decorating soldiers’ graves with flowers began in various towns across the country in the years following the Civil War. By 1890, Memorial Day was an official state holiday in all the northern states. After World War I, it became a day to honor all American military personnel who died in any war.
Modern Observances
In 1971, Congress declared Memorial Day a federal holiday and changed the observance date to the last Monday in May to create a three-day weekend. On Memorial Day, many Americans visit cemeteries and memorials to honor the fallen soldiers. American flags are placed on graves in national cemeteries, and volunteers often decorate graves with flowers and wreaths. The National Memorial Day Parade is held annually in Washington D.C., and the President or Vice President traditionally lays a wreath at the Tomb of the Unknown Soldier at Arlington National Cemetery. A National Moment of Remembrance is observed at 3 pm local time, when all Americans are encouraged to pause for a moment of silence. While Memorial Day marks the unofficial start of summer for many, it remains an important day of reflection and remembrance for those who made the ultimate sacrifice in service to the nation.
I spent a little bit of time recently browsing through some of the posts on Facebook having to do with peritoneal dialysis. There was a common thread throughout most of the posts. In general, they were made by patients new to dialysis, and more often than not, voiced fear and/or trepidation concerning their entry into the PD world.
While this is understandable to a point, my position is that the care and feeding of new patients is not serving them well. On Facebook, they are reaching out to more seasoned PD patients for consultation and input that obviously they are not receiving as part of their training. In retrospect, I did not have an opportunity to speak to a PD patient or group before or during training. It was not until much later that I was requested to talk to a large group of potential newbies in Fort Worth.
But this begs another issue and involves behavior. Why are patients entering the PD portal so afraid of what they are facing? What is so scary to raise so much fear and doubt among them? Numerous YouTube videos lay out what’s involved in excruciating detail. In training, you are encouraged to ask as many questions as you feel a need to and also progress at a pace you’re comfortable with. Personally, at the onset, I did not experience such feelings nor have I since. Perhaps it’s my military training to take charge and deal with life as it’s dealt to you. I’m certain shrinks have develved into this aspect of PD. I’ll see what I can dig up for a future blog.
I have gone eleven straight nights without ANY cycler alarms. This is a new record for me. I attribute the lack of alarms to my being more in tune with keeping kinks out of my catheter tubing. I am very aware of what’s going on with it, sometimes to the point that I am losing sleep over it. But that’s the price you pay. Kinks and alarms or no kinks and no alarms. Your choice.
I am writing this post on Wednesday for posting on Thursday. As we speak we are under a flood watch from 10 AM Wednesday until Thursday evening, and a tornado watch was just implemented. Our mowers are here doing our lawn ahead of the impending storm(s). There is a good side to all the rain we have been having this spring – our neighbor just dropped off a big bag of fresh Texas-grown sweet corn from his ranch toward Houston.
Ahead of the storms I did manage to get a little yard work in. I finished cleaning up the flower bed behind the master bedroom and installed new edging around it. See the first picture below. I also got started on installing manure/compost covering over the drip irrigation lines. See the second photo below. See, life can go on despite being on dialysis.
From time to time I have advocated for those of us on dialysis to indeed maintain some semblance of life as we knew it before. It is way too easy to become totally ensconced in dialysis in and of itself. I have attempted to maintain a life outside of dialysis requirements, and one of the aspects of this life is taking care of our large number of garden beds. Although the temps have been in the nineties, I have been steadily chipping away at several tasks we have laid out, one of which is the installation of a drip irrigation system for the flower and tomato plants I recently provided a video of.
In the video below, I show what is entailed in assembling such an automatic watering system, how it is laid out, the components, and the final product. Enjoy the video.
My wife and I try our best to keep our home including the grounds surrounding it in decent shape despite my dialysis. From time to time I have mentioned us having on the order of 15 garden beds which we are going through one-by-one to bring up to snuff. The video below shows some of them we have been working on. We have lots to go! BTW, the weather here in North Texas is now in the 90s most days so we have to pace ourselves accordingly . Enjoy the video.
I previously blogged about Metyos, the Paris, France-based company developing a wear-on device much like the Libre 3 to aid in detecting CKF earlier. In researching the company, I dropped down on their website and filled out a brief questionnaire indicating that I would participate in developing their new product. In a follow-up, I filled out a detailed history-based questionnaire, followed by an invitation to participate in a video conservation with a Metyos rep. That conservation took place this past Friday and was with the CEO/Cofounder, Alexandre Boulanger – lead picture.
The start of the conversation centered on how I learned of my impending kidney failure and the timeline of the failure. We then shifted to a picture of what they currently envision as their delivery system. It was at this point that I hit a snag. Unlike Abbott’s Libre 3 system for glucose readings which is a “one and done” every two weeks, Metyos’ system lasts eight days, and at that time the user must use a tool to replace a sensor in a receiver which remains attached to the user. In addition, at some interval not discussed, the user must wear a cuff-like device to charge the sensor’s battery. Ok so far?
Here’s the deal. The average age of those experiencing CKF tends to be upwards. Kidney disease can develop at any time, but those over the age of 60 are more likely than not to develop kidney disease. As people age, so do their kidneys. According to recent estimates from researchers at Johns Hopkins University, more than 50 percent of seniors over the age of 75 are believed to have kidney disease.
An herein lies the problem. Without insulting anyone, seniors in general are less apt to be comfortable with technology-based solutions. They tend to lose dexterity and just might find it difficult to manipulate the delicate touch required to change sensors. Not stated before, but like the Libre 3 system, the Metyos system uses a smartphone for analysis and display. Seniors in general shy away from smartphones and even if they have them, do not use the vast majority of their bells and whistles. For instance, my wife has three sisters all over 75 who don’t use the text function of their phones but you better believe they take pictures of grands and great-grands.
Lastly, I know for 100% certainty that FDA approval of the Abbott Libre 3 system to be covered by Medicare was held up until such time as Abbott developed a stand-alone reader for the Libre 3. When my first shipment of Libre 3 sensors was delivered from a third-party vendor, I received a reader with the shipment.
The Metyos system is set up to measure potassium (K) as a predictor of CKF. I was not familiar with this and quizzed Perplexity with the following results:
Potassium (K+) levels are an important predictor of adverse clinical outcomes in patients with chronic kidney disease (CKD). Several studies have demonstrated the following key points:
There is a U-shaped association between serum potassium levels and the risks of mortality and major adverse cardiac events (MACE) in CKD patients
. Both low (<4.0 mmol/L) and high (>5.0-5.5 mmol/L) potassium levels are associated with increased mortality and MACE risk compared to normal potassium levels (4.0-5.0 mmol/L). Hyperkalaemia (serum K+ >5.0-5.5 mmol/L) is associated with an increased risk of renin-angiotensin-aldosterone system inhibitor (RAASi) discontinuation in CKD patients, exhibiting a J-shaped relationship. RAASi medications are important for slowing CKD progression. Spending more time in a hyperkalaemic state (higher percentage of follow-up time with K+ ≥5.0, 5.5 or 6.0 mmol/L) is associated with increased risks of mortality and MACE across various cardiorenal disease populations, including CKD. High variability in serum potassium levels over time is also an independent predictor of increased MACE risk in CKD and other cardiorenal diseases, though not consistently associated with mortality risk. Other important predictors of adverse outcomes in CKD include older age, male sex, lower estimated glomerular filtration rate (eGFR), history of MACE, and RAASi usage
.
In summary, both high and low serum potassium levels, increased time spent in hyperkalemia, and high potassium variability are significant predictors of mortality, cardiovascular events, and RAASi discontinuation risk in CKD patients. Maintaining normokalemia is crucial for improving outcomes in this population.
