Alas, last night I had a Liberty Cycler alarm at the start of Drain Cycle Three. I got out of bed, reset the alarm, and immediately went back to bed and to sleep. The next time I awoke it was to the Cycler draining on the last drain of the evening, drain four. So while I did experience an alarm, I was able to reset it and jump back in bed. Heretofore I had to stay erect to assuage the inner sole of the Cycler. I take this as still a win for the revised way I am inserting the Cassette into the Cycler and will continue to do so and report back.
This past Wednesday I had two interfaces with Fresenius. The first was a lab visit for my monthly labs (I’ll relate to this in Monday’s blog), handout, and nurse Cindy checking my heart, feet, and ankles, running through a checklist of medical and other questions, and picking up fungible peritoneal dialysis supplies. All of this always precedes my monthly dialysis team meeting which is scheduled for 0830 Friday, 8/11/2023.
You can imagine that at 84 my relatives are also getting up there. With recognition that life is finite at best, this morning my wife Linda and I planned a flying trip to visit relatives in Indiana for the last part of September 2023. This month, August 2022 is when I started on Hemo, and September 2022 is when I started on PD. It is time to break out and get on with life and go on a mini-vacation. We are going to load up our BMW X5 with all the PD supplies we need for eight days and go for it, planning on being gone for six days. Fresenius has facilities in Little Rock, AR where we plan on spending the first and last nights en route, and also in Lafayette, IN our final destination.
In a subsequent blog, I’ll relate what I have learned about traveling while on PD.
Yesterday I blogged about the small setup change that I have made that seems to have “fixed” the renowned Liberty Cycle drain alarm problem I have experienced since deploying the device last September. In review, the setup change involves holding down the toggle clamp at the bottom of the compartment where the Cassette is inserted during setup to make certain the Cassette is well-seated in the Cycler’s compartment before closing the lid. Last night makes it four-for-four with no alarms after instigating this small change.
There appears to be a design flaw in the toggle/latch mechanism. The surface of the latch that is supposed to “capture” the cassette in its grasp actually is slanted upward and out toward the lid; it should be as a minimum straight up and down, in other words, at a ninety-degree angle to the bottom leg. I’ve included a picture of this area of the cycler above with a sketch in blue above the toggle/latch depicting what a side view of it looks like. This is not conducive to firmly latching the cassette in its grip (when the door is closed) and only compounds the lack of drain operation.
Why if the cassette is not firmly snapped into place in the cycler might drain problems arise? I surmise that the two partial globes that protrude on the cassette are part of a pneumatic system that “Pumps” fluid within the system. If the cassette is not firmly latched into position, it can flex outward toward the door during pumping reducing its efficacy/efficiency which leads to less “pressure” to drain fluid resulting, as often as not, in alarms. QED
I’ll keep you posted on my results. For comparison, the longest I’ve ever experienced between nights with no alarms is eight nights. The shortest time on dialysis excluding any overhead is ten hours and nine minutes.
I have more or less accepted that the Fresenius Liberty Cycler, while a life-saving piece of hardware, indeed does have extensive design faults. I have previously documented in this blog on numerous occasions that on more than half of the nights, I receive drain alarms. These alarms are beyond bothersome in that they require me to wake up, get out of bed, silence the alarm at the cycler, and stay upright until the drain cycle is complete, some 10-15 minutes usually, before I can return to bed and hopefully sleep. Try getting awakened every couple of hours by a Klaxon-type noise two or three times a night and see how you feel the next day. It is akin to being awakened by the General Quarters alarm aboard US Navy ships, where I have endured many.
I MAY have found a solution. I am, at this point, three nights into testing it and have gone three-for-three with no alarms. The solution is simple and obvious. I have provided four pictures below to illustrate what I am doing differently in setting up the Cycler initially which seems to have made a difference.
It involves snapping the cassette into the Cycler a little bit differently. In the past, I placed the plastic top of the cassette into the screw-heads in the Cycler and pressed the cassette at the area of the toggle to “snap” it in. I did not always hear a “snap” noise but the door closed and the Cycler went on with its setup with no further ado.
For the last three nights, I am still putting the top of the cassette under the two protruding screws in the Cycler, but then holding down the toggle clamp at the bottom with my finger (it is spring-loaded) before sliding the cassette into position, then releasing the toggle. This ensures the cassette is flat against the Cycler and the bottom is resting well within the toggle which is fully snapped in position.
The next four pictures are for clarification and are of my Cycler.
The cassette that snaps in Cycler and provides all the interfaces
Area cassette engages toggle my finger is pointing towards
View of Cycler receiver for cassette with the toggle at the bottom center
If you let it, being a dialysis patient becomes all-consuming; you are relegated to eating, sleeping, and living “dialysis.” I posit that this is not a good thing for either your physical or mental health and you need to “get away” from your dialysis persona, even if only for short breaks. While your life away may not be as robust as it previously was, you can still enjoy life as it is.
One of the things I enjoy is helping our son build out the new home he is building outside of Palo Pinto, Texas. It is a unique build in that he is utilizing a building technique called ICF, for Insulated Concrete Forms. Along with this, he and his family have a vision of a Doctor Dolittle-esk animal collection. First up in this collection, is a chicken coup which is under construction. I have helped him with the electrical wiring to and in the coup. See the video below where their daughter relates about the coup. See, you CAN do things other than dwell on dialysis. I do.
As I have documented in this blog numerous times, I am paying out-of-pocket for Abbott’s Libre Freestyle 3 Continuous glucose Monitor. It offers enough value to my life to make it well worth the expense. Turns out my brother-in-law Jerry is in the same boat.
Up to now, for about nine months, I have been paying $192.00 per month for two Libre 3s. I purchase them from HealthWarehouse.com out of Florence, KY under prescription from my GP. On 7/20/2023 my most recent shipment arrived with a billing of $154.12, a $37.88 reduction in price. No reason was provided but let’s surmise.
Why would Abbott drop the price of the Libre 3? They are already less expensive than the Dexcom G7 and also last longer. Dexcom is their nearest competitor I posit. I postulate further that their separate reading device which is required to gather Medicare coverage is about to be approved. They are using penetration pricing to be very attractive to insurance companies for coverage and thus increase the numbers game down their experience curve.
Have any readers of this blog experienced a drop in their Libre 3 prices?
At my age (84 and counting) a point is reached where we have to face the probability of meeting the Grim Reaper in due course. This blog is about gathering existing information on statistically when my meet and greet may take place, hopefully way in the future.
Our USA Federal System’s Social Security Admin maintains a website (https://www.ssa.gov/oact/population/longevity.html) wherein you can ascertain your projected statistical age at death assuming that all is well at the present. This is a starting point for me and neglects any of the difficulties extant in my aging body. The chart below captured from this site suggests, all else being equal, I have 6.4 years of additional life expectancy for a total of 91.0 years.
I assume then, 91.0 years to be a workable upper asymptote as the SSA site associated no probabilities with this projection, but should have. We now turn to attempt to uncover recent data on life expectancy for my age group that is also receiving dialysis. I did not and could not find any specifics only generalities such as “it depends…”
From here (https://pharm.ucsf.edu/kidney/need/statistics) I gleaned “Mortality rates vary depending on the kidney failure treatment. After one year of treatment, those on dialysis have a 15-20% mortality rate, with a 5-year survival rate of under 50%. Persons who receive transplants have a survival rate of about 80% after 5 years.”
But age was not factored in. If we accept the 5-year survival rate as 50% disregarding any other factors, this reduces my life expectancy down to 3 or so more years.
I guess the bottom line is that we’re looking at 3-6 years but will take whatever God deals us. We Will Not Ring The Bell!
The label has a warning “Consult your physician before use if you are pregnant, lactating, have a medical condition, or are taking any medication.” Since the last two pertain to me, “Mother may I use this product?” There is label info on Amazon in the link. The label contains nothing and states DV not established.
She responded “I can’t find any contraindications.” so I’m on it now, with a recommended amount with my breakfast juice. I doubt that all of a sudden I will feel like Superman but who knows? It is expensive BTW, $58 for 62 days worth but probably less expensive than buying fresh blueberries even in season.
No AI was used in writing this. Bing Illustrator was used for the lead graphic.
Recently I provided a timeline of my progression from not being on dialysis through all the wickets that lead to my present state of being on Peritoneal Dialysis. I reviewed my log books, and now have more eGFR data over time to share. I put the data into a text file and then imported it into Excel where first converted it, then sorted it, then I made a line graph out of the data. The data fit very closely to a straight line with a negative slope.
For reference, In 2006 my eGFR was 59. The chart data picks up from 2016 to July 2022 when it was 7 and I rang the bell for Dialysis. The actual sorted data is to the right in the graphic. Because I can, I also fitted a straight line to the endpoints of the data and the resulting equation is at the bottom of the graphic. My intent is to provide a reference for those interested in questions like “How long does it take for your kidneys to fail?,” or “How long before I might have to go on dialysis?”
Normally one would not associate Dental, Diabetes, and Dialysis in the same sentence or thought process. However, it is an uncontested fact that Diabetes and the need for Dialysis are closely associated with over 40% of dialysis patients also diabetic. Up to now, I had never heard or read any association between the latter two Ds and Dental. I know that often diabetic patients have dental challenges, but the study I’m about to present notes a causality going the other direction, Dental Problems -> Diabetes and further -> Dialysis.
Writing in the July 9 2023 issue of SciTechDaily, the University At Buffalo wrote an article titled “The Surprising Connection Between Chewing and Type 2 Diabetes.” The article is linked here:
With the following Prompt, I asked my AI to condense the article for this blog into 400 words or fewer entries in laymen’s terms. The Prompt and result follow. My closing comments are at the end. The lead graphic is from Bing Illustrator.
Summarize the following article into a 400-word or less entry at laymen’s level for a blog that concentrates on peritoneal dialysis:
ChatGPT:
Mehmet A. Eskan, a researcher from the University at Buffalo, suggests medical professionals treating Type 2 diabetes (T2D) patients should pay attention to their patient’s dental health. Eskan’s recent study, published in PLOS ONE, found a significant link between chewing functionality and blood sugar levels in T2D patients. Essentially, those who could chew well had much lower blood sugar levels than those who couldn’t.
Eskan and his team analyzed data from 94 T2D patients at a clinic in Istanbul, Turkey. They divided the patients into two groups based on their ability to chew – those with a good “occlusal function” (the ability to chew food effectively), and those who couldn’t chew well due to missing or improperly placed teeth. The results were striking: the group with good occlusal function had an average blood sugar level of 7.48, while those who couldn’t chew well had an average blood sugar level almost 27% higher, at 9.42.
Chewing, or mastication, kickstarts the digestion process by stimulating saliva production. It also helps our bodies absorb fiber and other essential nutrients from food, which are important for controlling blood sugar levels. Moreover, chewing well can promote feelings of fullness, helping to prevent overeating – a major risk factor for T2D.
Eskan’s research comes amid growing recognition of the role oral health plays in managing diabetes. In one case, a patient’s blood sugar level dropped dramatically after dental implants and restoration improved their ability to chew. However, the study also showed that factors like Body Mass Index (BMI), sex, smoking status, medications, or infections did not significantly affect the participants’ blood sugar levels.
High blood sugar levels can have serious health consequences, with a 1% increase linked to a 40% rise in the risk of heart disease among diabetic patients. Eskan hopes his research will spur further studies to understand the cause-and-effect relationship between dental health and blood sugar levels better.
So, the next time you sit down for a meal, remember: chewing your food well isn’t just good manners – it could be critical for your health, especially if you’re living with Type 2 diabetes.
My wife often laments that she spends hours cooking a nice meal for us, and given my military background where you are taught to inhale food on the run in uncertain circumstances, it is often gone in five minutes. As a couple, we are working on slowing our food intake down in keeping with the findings of this article.
Isabella Creto wrote in the July 19, 2023 issue of STAT an article titled “The kidney, in all its complexity, is captured in an atlas that could aid disease research.” The source article is here: It is a fairly complex article, so I asked my AI assistant to summarize it in laymen’s terms for us. The Prompt I authored and the ChatGPT result is below followed by another query about how this research applies to those of us on Peritoneal Dialysis. Read on:
Prompt: Summarize the following article to 400 words or less for a blog entry that addresses peritoneal dialysis in layman’s terms:
A team of scientists has developed the most comprehensive model of the human kidney to date, utilizing new techniques and technologies to probe deep inside human cells. This “kidney atlas” is a result of detailed analysis of nearly 100 tissue samples from healthy kidneys, and those with acute or chronic kidney disease. The research, published in Nature, found 51 main cell types, 28 kidney injury states, and 1.2 million “injury neighborhoods” that could be vital for understanding kidney diseases.
The atlas allows scientists to differentiate between “good” and “bad” neighborhoods of cells, with the latter usually falling apart due to dysfunctional cellular interactions. These cell neighborhoods were then compared with data from the Rare Diseases Clinical Research Network to identify which were associated with positive and negative health outcomes.
Kidney disease is a leading cause of death in the U.S., and symptoms often don’t appear until the disease is quite advanced. Once kidney failure occurs, the best treatment is a transplant, but this is not always possible and many patients have to rely on dialysis. The process of dialysis can be strenuous and carries the risk of infections, and only extends life by a few years.
The kidney atlas, which is public and open-source, is hoped to provide the basis for breakthroughs in the treatment of kidney diseases after decades of relatively little progress. It offers a common reference for all scientists, and the international Human Cell Atlas project was also involved in its creation.
There are, however, limitations to the current data, which is focused on mRNA, the step between DNA and the proteins that help cells function. Further study is needed to understand how cellular interaction affects health and disease at the protein level. The ultimate goal is to fully map the human kidney to pave the way for novel therapies for specific kidney diseases.
Prompt: How might this research help those of us on peritoneal dialysis with ESRD?
ChatGPT
This groundbreaking kidney atlas could pave the way for major improvements in the treatment of End-Stage Renal Disease (ESRD) and possibly help those on peritoneal dialysis in several ways:
Understanding Disease Mechanisms: By detailing the numerous cell types, states of kidney injury, and “injury neighborhoods,” the atlas could help researchers understand the precise cellular and molecular events that lead to ESRD. Understanding these mechanisms could lead to the development of new therapeutic strategies or interventions that might slow the progression of the disease or even reverse it.
Identifying New Treatment Targets: The atlas may help identify “bad neighborhoods” of cells that contribute to ESRD progression. These areas could become new targets for medications, potentially leading to more effective treatments for ESRD or therapies to protect the kidneys and delay or prevent the need for dialysis.
Personalized Treatment: The atlas could contribute to personalized medicine, by identifying specific cellular characteristics that differ from patient to patient. Treatments could then be tailored based on the individual’s unique cellular profile, potentially leading to more effective and less harmful therapies.
Biomarker Identification: By comparing healthy and diseased kidneys at the cellular level, researchers could identify new biomarkers that could be used to monitor disease progression or response to treatment. This could lead to earlier detection and intervention, better monitoring of the disease, and adjustment of treatments as needed.
Improving Dialysis: If researchers can pinpoint what makes certain cell neighborhoods “bad” or unhealthy, it may lead to improvements in dialysis techniques, making them more effective or safer. For example, it could lead to the development of dialysis techniques that better mimic the natural filtration process of the kidneys, which could improve patients’ quality of life.
While the potential benefits of this research are exciting, it’s important to remember that translating scientific discoveries into clinical treatments often takes many years. The kidney atlas represents an important step forward, but there is still much work to be done.
So probably not in my lifetime, but it’s heartening to know “their” working on it! The lead graphic is from Bing Illustrator with Prompt: Picture combining atlas with kidney research for blog
