Never ring the bell!
Last week, as I have previously blogged, I underwent a dialysis PET to help determine what my dialysis prescription should be. The results are back from the lab and might as well be written in Latin. I have included the PDF below so you can see for yourself what PET lab results look like. I am to have another dialysis team meeting 1/2/2024 during which we may ascertain the next step. I’ll keep readers in the loop. For Doug, what do my results suggest to you?
Recently I met with my dialysis team’s social worker to conduct a Fresenius end of year questionnaire. One of the topics covered involved anger and depression. I had a side conversation with my social worker about the subjects and she informed me that indeed, depression and anger are typical expressions that dialysis patients exhibit in her experience.
Since I do not have these feelings myself nor do I foresee having them, I wanted to know more about what drives these emotions in dialysis patients. Am I missing something? I turned to Poe, my AI Assistant for answers. I wrote the following Prompt with the following results. (Poe also provided the lead graphic.)
Prompt: Depression and anger are two of the most prevalent responses to the need for dialysis. What do researchers have to say about this topic?
Assistant Poe
Depression and anger are indeed common emotional responses among individuals who require dialysis treatment. Researchers have extensively studied the psychological impact of dialysis and have shed light on the prevalence, causes, and potential interventions for these emotions. Here are some key findings and perspectives from the research:
Prevalence of depression and anger: Studies have consistently found higher rates of depression and anger among individuals undergoing dialysis compared to the general population. The chronic nature of the treatment, lifestyle changes, and the burden of managing a complex medical condition contribute to these emotional responses.
Causes and contributing factors: The causes of depression and anger in individuals undergoing dialysis are multifaceted. They can include the disruption of daily life and activities, the loss of independence, physical discomfort, financial stress, fear of the future, social isolation, and the impact of chronic illness on the individual’s overall well-being.
Impact on quality of life: Depression and anger can significantly impact the quality of life for individuals on dialysis. They may experience reduced motivation, decreased adherence to treatment, impaired social functioning, and lower overall life satisfaction. These emotional states can also negatively affect physical health outcomes and increase the risk of hospitalization.
Importance of mental health support: Recognizing the psychological challenges faced by individuals on dialysis, researchers emphasize the importance of providing mental health support as an integral part of their care. This can involve interventions such as counseling, psychotherapy, support groups, and education programs aimed at enhancing coping skills and emotional well-being.
Effectiveness of interventions: Several studies have shown that psychological interventions, such as cognitive-behavioral therapy, mindfulness-based techniques, and psychosocial support, can effectively reduce depressive symptoms and anger among individuals on dialysis. These interventions focus on improving emotional regulation, enhancing problem-solving skills, promoting social support, and fostering resilience.
Integrated care approach: Researchers advocate for an integrated care model that addresses both the physical and psychological aspects of dialysis treatment. This involves collaboration between nephrologists, psychologists, social workers, and other healthcare professionals to provide comprehensive support. By addressing emotional well-being alongside medical management, this approach aims to improve overall patient outcomes and quality of life.
It is important to note that the experiences and emotional responses to dialysis can vary among individuals. Therefore, personalized and patient-centered approaches are crucial in addressing depression, anger, and other psychological aspects of care for individuals undergoing dialysis treatment.
The saying “I am never out of the fight” is closely associated with the U.S. Navy SEALs. It encapsulates the unwavering determination, resilience, and mindset that SEALs embody in the face of adversity.
The origins of this motto can be traced back to the legendary Navy SEAL sniper, Lieutenant Commander Mark W. Divine. Divine, a former Navy SEAL himself, popularized the phrase in his book “The Way of the SEAL: Think Like an Elite Warrior to Lead and Succeed.” In the book, Divine emphasizes the importance of mental toughness, perseverance, and an indomitable spirit to overcome challenges and achieve success.
“I am never out of the fight” reflects the SEALs’ commitment to excellence and their refusal to give up under any circumstances. It signifies their readiness to face and overcome obstacles, no matter how daunting or insurmountable they may seem. This mindset is deeply ingrained in the SEAL training and operational ethos, as their missions often involve high-risk situations, where failure is not an option.
The phrase also highlights the SEALs’ ability to adapt and improvise in dynamic and unpredictable environments. It conveys their determination to find alternative solutions, regroup, and continue the fight, even when faced with setbacks or unexpected challenges. It serves as a reminder to maintain focus, stay resilient, and press forward despite the adversities encountered along the way.
Moreover, “I am never out of the fight” embodies the SEALs’ commitment to their teammates and the camaraderie that exists within their ranks. It signifies their dedication to supporting and protecting one another, ensuring that no member is left behind. This unwavering loyalty and sense of brotherhood are crucial elements in the success of their missions and the preservation of their unit cohesion.
Beyond the SEAL community, the saying has resonated with many individuals seeking inspiration and motivation in their personal and professional lives. It has become a symbol of resilience, perseverance, and the refusal to surrender in the face of challenges. The mindset encapsulated by these words serves as a powerful reminder that, no matter the circumstances, one can always find the strength to keep fighting, to keep pushing forward, and to never give up.
In summary, the U.S. Navy SEAL saying “I am never out of the fight” embodies the unwavering determination, resilience, adaptability, and teamwork that defines the SEALs. It serves as a reminder to maintain an indomitable spirit, persist in the face of adversity, and stand together with a shared commitment to mission success.
I am never out of the fight applies equally to those of us on dialysis. Not only am I, Hank Feeser, never our of the fight, I’ll never Ring the Bell. Think about it if you are on dialysis or have other health shortfalls, and read what it means again and again. I am never out of the fight.
Last Thursday I blogged (link) about a online calculator for Kt/V that is provided by Fresenius (see link). I tossed it out there for patients to play around with but did not articulate about one very important aspect of the calculation. This blog is to rectify that shortcoming on my part. Thus the “cleanup.”
In the left panel center section you have the option of setting “Residual Kidney Function.” For the example I used, I set it to zero. Since I am still urinating, albeit not that much, it is NOT zero but some positive number, probably for me about 0.3. If you increase this from zero to 0.3 in the left panel, the calculations in the right panel, yields 1.7 on the dial. The dial reading is a combination of what your kidney is producing and what Kt/V is obtained from dialysis itself. There are two components. There’s a label at the bottom of the third panel as “Kidney Weekly Kt/V” and “Peritoneal Kt/V.” Thus the dial is showing both.
Sorry for any confusion. Since Kt/V is so central to our dialysis well being, tomorrow’s blog will dig even deeper into it. The more patients know, the better patients they can become. Certainly that is the goal for all of us, regardless of what ails us.
As part of prep for my annual physical in March 2024, on 12/13/2023 my GP had a set of labs done by Quest Labs here in Granbury,TX. One of the labs we are always interested in is how my Testosterone levels are doing. The lead graphic above shows that they have varied since 2018, and my results yesterday indicated they were above the upper bound at 935 or so. Keep in mind that every two weeks I am injected with a 1 ml Testosterone shot so for me, this is not unexpected. My last shot was Sunday a week ago.
Here’s the rest of the story. In our society, we talk in hushed voices about women and their “hot flashes” and even, God bless us, Hormone Replacement Theory. What we NEVER talk about, even among men in the locker room, so to speak, is men and their testosterone levels. Among men, testosterone is inexplicably tied to their perceived sexual prowess, and any discussion along the lines of lack thereof is taboo. It directly attacks their manhood.
This is tragic in that testosterone in men has many many more functions than growing hair on their chests. It extends further than this to severely impacting those of us (males) on peritoneal dialysis. To help in this area, I turned to my AI assistant Poe with the following Prompt and results. Please read what she has to say, and my comments thereafter. Listen up Fresenius Dialysis Team; you are brought to task therein:
Prompt: Write a 500 word blog in a serious tone on how important testosterone is to male patients on peritoneal dialysis.
Assistant Poe
Title: The Significance of Testosterone for Male Patients on Peritoneal Dialysis
Introduction
Peritoneal dialysis is a life-saving treatment for individuals with end-stage renal disease (ESRD). While it offers numerous benefits, it can also have an impact on hormone levels in the body. Specifically, male patients on peritoneal dialysis may experience a decline in testosterone levels. In this blog post, we will explore the importance of testosterone in male patients and shed light on the significance of managing testosterone levels for those undergoing peritoneal dialysis.
Understanding Testosterone
Testosterone is a hormone primarily associated with male sexual development and reproductive function. However, its influence extends far beyond these realms. It plays a crucial role in regulating bone density, muscle mass, red blood cell production, mood, cognitive function, and overall well-being. Testosterone levels naturally decline with age, but in male patients on peritoneal dialysis, this decline may be accelerated due to various factors.
Testosterone and Peritoneal Dialysis
Peritoneal dialysis involves the use of a catheter to filter waste products and excess fluids from the body. While it is an effective treatment, it can lead to hormonal imbalances. The loss of proteins during dialysis can disrupt the delicate equilibrium of hormones, including testosterone. Additionally, factors such as inflammation, oxidative stress, and the presence of comorbidities can further contribute to decreased testosterone levels in these patients.
Impact on Male Patients
The decline in testosterone levels can have significant consequences for male patients on peritoneal dialysis. Firstly, it can lead to a decrease in muscle mass and strength, resulting in fatigue and reduced physical performance. This can impact the patient’s ability to carry out daily activities, diminish their quality of life, and potentially lead to muscle wasting. Moreover, low testosterone levels may contribute to decreased bone mineral density, increasing the risk of osteoporosis and fractures.
Furthermore, testosterone deficiency can affect mood and cognitive function. Male patients may experience symptoms such as depression, irritability, difficulty concentrating, and reduced motivation. These changes can further hinder their ability to participate in social activities and negatively impact their mental well-being.
Managing Testosterone Levels
Recognizing the importance of testosterone in male patients on peritoneal dialysis, it is crucial to monitor and manage testosterone levels effectively. Regular assessment of hormone levels can help identify deficiencies and guide appropriate interventions. Healthcare professionals may consider various treatment options, including testosterone replacement therapy (TRT).
TRT involves the administration of testosterone to supplement or restore levels in the body. It can be administered through different methods, such as injections, gels, patches, or pellets. However, it is essential to evaluate each patient individually and consider potential risks and benefits before initiating TRT.
In addition to TRT, optimizing lifestyle factors can also play a role in managing testosterone levels. Regular exercise, a balanced diet, stress reduction techniques, and adequate sleep can positively influence hormone production and overall well-being.
Conclusion
Testosterone is a vital hormone for male patients on peritoneal dialysis, as it impacts various aspects of their health and well-being. The decline in testosterone levels associated with this treatment can lead to muscle loss, decreased bone density, mood disturbances, and cognitive impairments. By actively monitoring testosterone levels and implementing appropriate interventions, healthcare professionals can help mitigate these adverse effects. It is crucial to individualize treatment plans and utilize a multidisciplinary approach to optimize the overall health and quality of life for male patients on peritoneal dialysis.
My closing comments for Fresenius Dialysis Team: It appears that monitoring testosterone levels for males is central to the overall care and feeding of your patients. Why has this never been a topic of interest or questioned by team members? What are you going to do about it? It would appear to be as central to a male patients’ well being as phosphorous, potassium or other chemical levels you keep a keen eye on?
A couple of days ago I blogged about finding an algorithm to calculate PD prescriptions. Alas, because of cycle restrictions being 6-12 cycles, it did not apply to me. I searched some more, and found a PD Calculator by Fresenius Medical (link) that does not have these restrictions. All of the following three screen shots are from this calculator with my data inputted.
There are three panels that are viewable on my large desktop computer all at once which is nice. The left, or first panel above is where patient-specific data is entered. Notice there are small “i”s next to most values that explain in detail what the required value is all about; I found them to be helpful. The Transport entry allows you to dynamically change this value and see how it impact values of Kt/V which are displayed in the third panel. Values are mostly self-explanatory otherwise.
The second or center panel provides Estimated Prescription Data to obtain a minimum of a Kt/V of 1.7. In my case, for the values entered in the left panel, it suggests a maximum fill volume of 2.7 L per fill, and 6 exchanges.
The right/last panel is labeled Physician Modeling. I inputted my current prescription of 2.5L per fill 4x fills, and 2 hour dwell and the panel provided an estimated Kt/V value of 1.4 for these parameters. This is very close to the lab-provided value of 1.46 and 1.67 my two most recent readings. To obtain these readings, I had to adjust the Transport input in the left panel to the second highest setting which is more Transport than I recall I am getting from my current PD.
So there it is, a way for patients to play around with their numbers and see how variables are interrelated. Go for it!
As previously reported, I had a Dialysis Team meeting this past Friday. All team members were present – my Renal Doctor, Social Worker, Dietician and Nurse. Before the meeting started, my Dialysis Nurse Cindy mentioned Fresenius had a program to calculate the optimum dialysis solution amount and dwell time but she could not run it because it only ran on Windows 7 which they no longer had access to. Subsequently I volunteered to provide a Windows 7 notebook but have not heard back as of this writing.
This got my thinking, if an algorithm had been developed in the past, it should be available to port to newer systems. So I did a Google search on “Peritoneal Dialysis Algorithms” and came up with what I thought I needed. In a 2020 article in Sage by Chang Yin Chionh et all (link), the graphic above and the following equations were extracted. This article provides the equations we need to calculate both the volume of fluid to use given a target adequacy target (Kt/V) and/or Dwell time.
The top portion of the lead graphic portrays the interconnection between the measurement of how well PD is working, that is Kt/V, and the variables that influence this value incorporated in the prescription, that is # of cycles, dwell volume, and dwell time. These values “influence” Urea which in turn feed into the calculation of Kt/V, which we want to keep at or above 2.0 in my case.
The following screenshot is from the section of the cited article wherein equations are presented to calculate dialysis volume and/or time given a target Kt/V.
Interestingly, at the end of the linked article there is a downloadable Excel spreadsheet that accomplishes their calculations very well. However, there is one big problem that precludes using this article for my particular case. In the fine print it states that their model, or algorithm if you will, is only valid for cycle times of 1 to 4 hours (I am on 2 hours per cycle so we’re OK here) and 6-24 cycles (I am on 4 cycles so the model restrictions fail here.)
Neglecting failure of the cycle restrictions, I ran my numbers anyway, and came up with I should be using 1.17 liters of fluid in 12 cycles to obtain a Kt/V of 2.0, the lower bound. I am currently using 2.0 liters of fluid in 4 cycles and have a Kt/V of 1.67.
Stay with me, we’ll figure this out. I’ll search for more algorithms that accommodate my particular situation and seek to optimize my prescription. Nobody said it would be easy I did learn that there is an entire publication, Peritoneal Dialysis International devoted to peer reviewed research into the subject so all is not naught!
Recently I happened across a group on Facebook named “Home Dialyzers FB Group Research.” Within this group is a young lady at Jefferson.edu (link) that is working on her doctorate in the Health Science area investigating decision regret for ESRD patients who have chosen conservative management compared to those who have chosen dialysis. I responded to her request to beta-test her concepts and the questionnaire she is authoring to gather data to support her dissertation.
Over this past weekend I reviewed her latest product and found that it did not capture the richness of the conceptual phase that predates actually going on dialysis. It is an extremely complex decision-making effort that is surely different for each individual. In my case, I relied mostly on my own research and numerous discussions with my wife Linda and my kidney doctor, Dr. Turner. I studied lots of numbers and odds and expected life given which protocol was employed before making my final decision. In retrospect, it was the best one to make. My decision making was much less emotional and more quantitative-driven, like a good engineer’s should be. My former quant professors at Purdue University are smiling at me now!
This process and what the PhD student is attempting to quantify is captured in the Robert Frost poem “The Road Not Taken” which is included in this blog at bottom for those inclined to refresh their memories along cultural lines. Knowing that my AI Assistant Poe would have something interesting to add to this conversation, I quizzed her with the following prompt and response. It captures the subtleties very well.
Prompt: Robert Frost wrote about the path less traveled. Apply this concept to those of us on peritoneal dialysis in a 500 word or less blog entry in a forthright tone.
Assistant Poe
Introduction: Peritoneal dialysis (PD), my friends, is the road less traveled in the world of renal replacement therapy. Just like Robert Frost’s poem, “The Road Not Taken,” it’s a choice that sets us apart from the majority. And let me tell you, choosing this path requires courage, resilience, and a willingness to challenge the status quo.
When faced with the need for dialysis, the common route chosen by many is hemodialysis. It’s the well-trodden path, the one that everyone seems to know about. But for those of us who dare to venture off the beaten track, PD offers a different experience—one that demands self-reliance and a pioneering spirit.
Let’s be honest here: PD is not the easy way out. It comes with its own set of challenges and responsibilities. We must learn to navigate the intricacies of the catheter, master the dialysis process, and maintain a sterile environment. It’s a path that demands discipline and attention to detail. But for those who are willing to put in the effort, the rewards can be significant.
One of the most notable advantages of PD is the freedom it affords us. While hemodialysis patients are tied to fixed treatment schedules and frequent visits to the dialysis center, we have the privilege of performing our treatments in the comfort of our own homes. We are not bound by rigid time constraints or the need to travel to a clinic. Instead, we can adapt our dialysis routine to fit our lives, allowing for greater flexibility and independence.
But let’s not sugarcoat it—PD is not without its obstacles. We may encounter peritonitis, fluid imbalances, or issues with our catheters. These challenges can be daunting, but they are not insurmountable. We must face them head-on, armed with knowledge and a proactive mindset. By staying vigilant, seeking timely medical attention, and adhering to best practices, we can overcome these hurdles and continue on our chosen path.
Choosing PD also means embracing a different mindset—a mindset of self-empowerment and self-advocacy. We become the captains of our own healthcare, taking charge of our treatment and making informed decisions. We must educate ourselves about our condition, stay informed about the latest advancements, and actively participate in our care. It’s a path that demands active engagement, but it also empowers us to take control of our lives.
Moreover, by choosing the path less traveled, we become part of a unique community. We connect with fellow travelers who understand our journey, who have faced similar challenges, and who can offer support and guidance. We share our experiences, exchange tips and tricks, and build a network of individuals who are navigating the same uncharted territory. Together, we become a force to be reckoned with—a collective voice advocating for the recognition and understanding of PD.
So, my friends, as we walk this less traveled path of peritoneal dialysis, let us embrace it with open arms. Let us recognize the strength and courage it takes to choose the unconventional. Let us face the challenges head-on, armed with knowledge and determination. And let us remember that we are not alone—there is a community of warriors by our side, ready to lend a helping hand.
In the end, the path less traveled may not be the easiest or the most popular, but it is a path that offers us the opportunity to live life on our own terms. It is a path that demands resilience, determination, and a willingness to challenge the norm. By choosing PD, we are not just patients—we are trailblazers, carving out a new way forward.
So, my fellow travelers on the road of peritoneal dialysis, let us embrace the path less traveled with unwavering resolve. Let us inspire others with our courage, educate them about the possibilities, and shatter the misconceptions that surround PD. Together, let us forge ahead, knowing that by choosing this unconventional path, we are making a difference in our own lives and in the lives of others.
In the words of Robert Frost, “Two roads diverged in a wood, and I—I took the one less traveled by, and that has made all the difference.” And indeed, for those of us on peritoneal dialysis, choosing the path less traveled has made all the difference—transforming our lives and allowing us to thrive against all odds.
BY ROBERT FROST
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
Fresenius, the company that provides everything for me in the way of dialysis, yesterday reported a major data breech. “Fresenius Medical Care, a leading global dialysis group, has reported a significant data breach at its U.S. subsidiary, Cardiovascular Consultants Ltd. The breach, which occurred on September 29, has resulted in the theft of medical records and other sensitive data belonging to approximately 500,000 individuals. The incident is far-reaching, impacting patients, former patients, guarantors, and 200 staff members across various states, U.S. territories, and four countries.” (Link)
So standby for the fallout if you are in any way associated with Fresenius.
Introduction:
Peritoneal dialysis (PD) is a life-saving treatment for individuals with end-stage renal disease (ESRD) that helps remove waste and excess fluid from the body. While PD offers patients greater flexibility and control over their treatment, individuals on peritoneal dialysis must maintain a healthy diet. In this blog, we will explore the impact of consuming carbonated drinks, refined sugar, artificial foods, and processed foods (CRAP) on patients undergoing peritoneal dialysis and provide practical tips for making healthier choices.
Carbonated Drinks:
Carbonated drinks, including soda and fizzy beverages, are often high in phosphorus, which can be harmful to individuals with kidney disease. Excessive phosphorus intake can lead to complications such as bone disease and cardiovascular issues. Moreover, carbonated drinks are usually loaded with sugar or artificial sweeteners, which can negatively impact blood sugar control.
Instead, patients on peritoneal dialysis should opt for healthier alternatives like water, herbal tea, or diluted fruit juices. Staying hydrated with these options supports kidney function and helps maintain overall health.
Refined Sugar:
Refined sugar is a common ingredient found in many processed foods and beverages. It contributes to weight gain, increases the risk of developing diabetes, and can lead to poor blood sugar control. Managing blood sugar levels is essential for individuals on peritoneal dialysis to prevent complications and maintain overall health.
To reduce refined sugar intake, patients should prioritize whole foods and natural sweeteners like fruits or small amounts of honey or maple syrup. Additionally, working with a registered dietitian specializing in renal nutrition can provide personalized guidance on sugar consumption.
Artificial Foods:
Artificial foods, such as artificial sweeteners, preservatives, and flavor enhancers, often found in processed snacks and ready-to-eat meals, should be avoided by patients on peritoneal dialysis. These additives may have a negative impact on overall health, potentially affecting blood pressure, weight management, and kidney function.
To maintain a healthy diet, patients should consume fresh, whole foods and cook meals from scratch whenever possible. Patients can better support their kidney function and overall well-being by incorporating nutritious ingredients and avoiding artificial additives.
Processed Foods:
Processed foods, including canned goods, pre-packaged meals, and fast food, are high in sodium, phosphorus, and unhealthy fats. These components can lead to fluid retention, elevated blood pressure, and inflammation, which can strain the kidneys and hinder the effectiveness of peritoneal dialysis.
To minimize the consumption of processed foods, patients should prioritize a diet rich in fruits, vegetables, lean proteins, and whole grains. These nutrient-dense foods provide essential vitamins and minerals while reducing the intake of harmful substances.
Conclusion:
Regarding peritoneal dialysis, making informed dietary choices is crucial for maintaining optimal health. By avoiding CRAP (carbonated drinks, refined sugar, artificial foods, and processed foods) and focusing on a wholesome, balanced diet, patients can support their kidney function, manage blood sugar levels, and promote overall well-being.
Remember, every individual’s dietary needs may vary, and it is essential to consult with a registered dietitian specializing in renal nutrition to develop a personalized meal plan. With a commitment to healthy eating, patients on peritoneal dialysis can enhance their quality of life and improve their long-term outcomes.
My AI tool Poe helped write the above with corrections by Grammerly.
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