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
The National Kidney Foundation (NKF) reports that about 15% of Americans, or 37 million people, have chronic kidney disease (CKD). NKF further states that hypertension (high blood pressure) is second only to diabetes in the cause of kidney failure. About 20% of those with hypertension may have CKD. Recently (2023), the U.S. Food and Drug Administration (FDA) highlighted the correlation between hypertension and chronic kidney disease on its website, urging Americans to control their blood pressure in order to reduce their chances for CKD.
I recently ran across an article in SciTechDaily by European Society of Cardiology dated 7/17/2023 titled “An Unexpected Pathway to Hypertension: Your Phone Habits Could Be Putting Your Heart at Risk.” I immediately applied this concept to myself, my triple bypass, hypertension, and subsequent Peritoneal Dialysis. Are we as a global population setting ourselves up for hypertensive-driven health challenges as a result of cell phone use?
I turned to my ChatGPT and instructed it to write a 500-word or less summary of the article. The results follow. Talk less, live longer?
New research published in the European Heart Journal – Digital Health suggests that spending over 30 minutes per week talking on mobile phones may lead to a 12% increased risk of high blood pressure (hypertension). The study, conducted by Professor Xianhui Qin of Southern Medical University, Guangzhou, China, utilized data from the UK Biobank and involved over 200,000 adults aged 37 to 73 years.
Nearly three-quarters of people aged 10 and over globally own a mobile phone, and approximately 1.3 billion adults worldwide suffer from hypertension, a major cause of heart attack, stroke, and premature death. Mobile phones emit low-level radiofrequency energy, previously associated with short-term blood pressure increases. This research exclusively focused on the link between phone call duration and hypertension onset, an area that past studies showed mixed results, possibly due to the inclusion of other mobile phone activities.
The study participants’ information regarding phone usage for calls was collected via self-reported questionnaires, and those who used their phones at least once a week for this purpose were categorized as mobile phone users. The researchers then analyzed the relationship between mobile phone usage and new-onset hypertension, adjusting for factors such as age, sex, BMI, race, medical history, lifestyle, and medication.
The median follow-up period was 12 years, during which 13,984 (7%) participants developed hypertension. A 7% higher hypertension risk was observed in mobile phone users compared to non-users. Individuals spending 30 minutes or more per week on phone calls were found to have a 12% higher likelihood of developing hypertension than those who spent less time. The results were consistent across genders.
Further, the study revealed a positive correlation between phone usage time and hypertension risk, irrespective of participants’ genetic susceptibility to hypertension. The risk was notably high (33% higher) in those with high genetic risk who talked on the phone for at least 30 minutes weekly compared to those with low genetic risk spending less time on the phone. Notably, the study found no significant link between hypertension and years of phone use or usage of hands-free devices or speakerphones.
Prof. Qin advised limiting mobile phone calls to under half an hour per week for heart health preservation until more research confirms these findings.
Jen Murphy wrote an article that was in the 7/15/2023 edition of The Wall Street Journal titled “Six Exercises for Better Balance from a Trainer Who Lives on a Paddleboard.” At first blush, you might cast this article out of hand into the trash as not having any application to those of us on dialysis. Nothing could be further from the truth. Dialysis can take the starch out of you, drain your energy, cast you as a shut-in, and all sorts of other degenerating aspects that directly impact something named “Proprioception.” In this blog, I will first define the concept of Proprioception and how it applies to those of us on peritoneal dialysis followed by an excerpt from Murphy’s article on the most simple way for us, regardless of age, or fitness, to improve our proprioception.
First I turned to my AI Assistant with the following prompt and result concerning proprioception:
Prompt: Write a blog entry about how Proprioception applies to those of us who are up in age and on peritoneal dialysis.
ChatGPT
Proprioception refers to the sense of the relative position of one’s own parts of the body and the strength of effort being employed in movement. It is essentially our sense of body awareness and is often described as the “sixth sense”. This is extremely important for all individuals regardless of age, health condition, or treatment modalities.
In the context of aging and peritoneal dialysis, proprioception plays a few significant roles:
Fall Prevention: As we age, our proprioception can decline, increasing the risk of falls. Being on peritoneal dialysis doesn’t directly impact proprioception but can contribute to frailty and general weakness. Falls can be especially harmful to people undergoing dialysis due to weakened immune systems and a greater risk of complications. Thus, maintaining good proprioception can help prevent falls.
Self-Care Tasks: For someone on peritoneal dialysis, maintaining good proprioception can help with the ability to perform self-care tasks, like dialysis exchange, and maintaining independence.
Exercise and Rehabilitation: Proprioceptive exercises, which can include balance training and strength training, can help maintain muscle mass, improve coordination, and improve quality of life. This can be particularly important for people on peritoneal dialysis who may experience muscle wasting.
If you are an older adult on peritoneal dialysis, you might find it beneficial to work with a physical therapist or an occupational therapist. They can provide proprioceptive exercises and balance training, which can improve your safety, independence, and overall well-being. Always remember to consult with your healthcare provider before starting any new exercise regimen.
Murphy notes in her article that “Falls are the leading cause of injury and injury-related death among Americans 65 and older, according to the Centers for Disease Control and Prevention. Research shows our balance begins to decline starting at about age 50. But falling doesn’t have to be an inevitable part of aging.”
In her article, Murphy outlines six exercises to improve balance as a proprioceptive incentive. The first is most applicable to those of us on dialysis and is a doable do. It is named “Single-leg balance” and is illustrated in the lead picture from Bing Illustrator. The following is a quote from this section of the cited WSJ piece:
“
Why:
A 2022 study published in the British Journal of Sports Medicine suggests an inability to balance on one leg for 10 seconds in mid- to later life is linked to a near doubling the risk of death from any cause within the next decade. You can do this simple balance drill while brushing your teeth or watching TV.
How:
Stand with feet hip-width apart. Balance on your right foot as you bring your left foot off the floor. Start with a hover. Eventually, bring the left knee just below hip height. Keep hips square and eyes focused forward on a steady object. If you need assistance, stand near a chair or wall and use your fingertips as a light aid. Hold for 10 to 15 seconds. Complete three reps per leg.
Options:
Increase the challenge by standing on an unstable surface such as a BOSU ball or pillow. Progress to bouncing a tennis ball in front of you and catching it while you remain balanced. Next, try to move the hovering foot in front of you, to the side, and behind you while keeping the hips square. The most advanced progression is performing any of these variations with your eyes closed.”
Summary: We introduced the concept of Proprioception which in laymen’s terms is balance, how and why it declines as we age, how the concept applies to those of us on peritoneal dialysis, and by conducting a simple exercise how we can improve in this area from just about anywhere in our domicile. So get off your butts and stand on one foot for a while. I am.
I sense that one of the many bothersome attributes of being associated with dialysis is the timing and sequencing of events leading up to the actual event. It is much like an avalanche; once set in motion it adapts a will of its own. In this blog, I relate the events that preceded and included my journey from chronic kidney failure to being a card-carrying peritoneal dialysis member.
I am going to start off by relating my eGFR readings by date preceding my decision to request dialysis. In the table below, I present the date and corresponding eGFR calculation. As you can see from the table, roughly two years prior to requesting dialysis my eGFR was in the 14-15 range. Just prior to requesting dialysis, it was 7. So for me, I went two years between an eGFR of 15 to dialysis.
Date
eGFR Calculation
5/20/20
14
8/20/20
15
11/17/20
15
2/24/21
15.7
5/4/21
14
8/4/21
11
11/9/21
11
12/30/21
11
3/1/22
10
7/7/22
7
Table Date versus eGFR Reading
Let’s now turn to the events leading up to my actual dialysis. From the table below, note I started Hemo on Saturday, August 20, 2022, followed by Peritoneal Dialysis at home on 9/30/2022.
Date
Activity
8/16/2022
Felt bad, requested dialysis
8/17/2022
Hemo port installed Ft Worth hospital
8/20/2022
0500 Sat morning started hemo @ Fresenius
9/24/2022
Last hemo dialysis
9/26/2022
Started PD training and manual PD
9/29/2022
Last training and manual PD
9/30/2022
First home PD treatment I’m in charge
10/3/2022
Local doctor removed hemo catheter in office
9/6/2022
PD port in Ft Worth Hospital (out of order)
Chronology PD Journey
A comment on timing based on the above table. Given that my eGFR was slowly decreasing, I took the time to research what PD was all about and watched numerous YouTube videos on the mechanics of using the Liberty Cycler for dialysis. Going into training I was already up to speed on most of the mechanics, techniques, and sanitary requirements. My wife and I purchased the home we currently live in with the foresight that I would be requiring dialysis, and knew from research that vast amounts of dialysis fungibles would be required. We had our master bedroom outfitted and ready for dialysis prior. The home we purchased provides the required storage. Lastly, I successfully completed the training in just four days. This is because of our research prior to dialysis and also because I am a Purdue University-trained engineer used to dealing with “systems.” Dialysis is a system. Fresenius allocates two weeks for training and it is not without precedent to take longer.
I consider myself fortunate to be in the care of nephrologist Dr. T. Turner and the Fresenius Dialysis Team. It is obvious that you really really have to have your ducks in a line to accomplish an aggressive timeline such as I just presented. But I am living proof if you have the opportunity to plan ahead and anticipate it can be done.
