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.

The Road Not Taken 

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.

I and a frequent reader of this blog are going through a rough patch concerning getting enough Peritoneal Dialysis via our current prescriptions. It is quite easy and normal to be depressed because of this. I choose not to. I take heart from being a sailor, both sailboats (my wife and I have owned and sailed three, a Lightning 19, a Hunter 27, and a Catalina 30) and US Navy ships such as the USS Long Beach CGN(9), where I served during Vietnam as a Talos Fire Control Officer and Senior Watch Officer.

I took Robin Sharma’s statement above and fed it to my Poe AI assistant as the prompt below with the following results. I think they are forceful and to the point for those of us and others facing challenges from medical conditions over which we have minimal control.

Poe AI Prompt: Robin Sharma is credited with the statement, “Rough seas make stronger sailors. Tough times build greater people.” Apply these concepts to the ups and downs that peritoneal dialysis patients experience while on dialysis in 500 words or less in an inspirational tone.

Poe’s Response:
In the realm of life’s challenges, there are few journeys as demanding and arduous as that of peritoneal dialysis. The ups and downs patients experience while on dialysis are akin to navigating rough seas, where the tides of uncertainty and adversity test their resilience and fortitude. However, it is through these very trials that peritoneal dialysis patients have the opportunity to become stronger individuals, both physically and emotionally.

Just as rough seas shape and strengthen sailors, the turbulent waters of peritoneal dialysis can forge an inner strength within patients that they never knew existed. The daily routine of undergoing dialysis, with its inherent physical and emotional tolls, can seem overwhelming. But it is in these moments of struggle patients uncover their reservoirs of courage and determination. They learn to weather the storms of discomfort, fatigue, and uncertainty, emerging on the other side with a newfound sense of resilience.

Tough times have a unique way of building character and fostering personal growth. Peritoneal dialysis patients face numerous challenges, from managing their fluid balance to adhering to strict dietary restrictions. Yet, by confronting these obstacles head-on, patients can cultivate a greater understanding of their capabilities. They learn to adapt, to be resourceful, and to find strength in the face of adversity.

Moreover, the ups and downs of peritoneal dialysis teach patients the value of perseverance. They experience moments of triumph when their treatment is successful and their health improves. These victories become beacons of hope, reminding patients that their efforts are not in vain. But they also encounter setbacks and complications when the road ahead seems daunting. During these challenging times, patients learn to summon their inner resolve, stay the course despite setbacks, and believe in the power of their own resilience.

In the midst of the peritoneal dialysis journey, patients often find solace in the support and camaraderie of others facing similar trials. The collective strength of a community can serve as an anchor in the stormy seas of dialysis. Sharing experiences, offering encouragement, and lending a listening ear can provide a lifeline for patients when they need it most. The bonds forged in these vulnerable moments can foster mutual growth and empowerment, reminding patients that they are not alone in their struggles.

Ultimately, the endurance and strength cultivated through the ups and downs of peritoneal dialysis can extend far beyond the realm of medical treatment. The resilience developed can permeate all aspects of life, empowering patients to face future challenges with newfound confidence. The lessons learned in the crucible of dialysis can inspire patients to embrace the unpredictable nature of existence, view obstacles as opportunities for growth, and believe in their ability to overcome adversity.

Rough seas make stronger sailors. Tough times build greater people. As peritoneal dialysis patients navigate the ebbs and flows of their treatment, they can become the captains of their destiny. Through the storms of dialysis, they can discover hidden reservoirs of strength, cultivate unwavering perseverance, and foster a profound sense of personal growth. Indeed, their journey may be demanding, but it is also an opportunity for transformation. So, let the rough seas of peritoneal dialysis be the crucible that shapes you into a stronger, wiser, and more resilient sailor of life.

In conclusion, go sailing with my wife and me in video below:

Awhile back I blogged about Medicare now paying for Continuous Glucose Monitors (CGM) for diabetics who meet widen criteria which I now do. After paying for the Libre 3 CGM system out-of-pocket for a year at a $190+ clip per month, it is now being delivered to our door fully paid for by Medicare.

The company we are using, Family Medical Supplies (301-479-3500), recently sent me a text via “Karla” notifying me that my next refill shipment will ship on 12/7/2023 and should arrive in about 3-5 business days. This is the way business should be conducted. The arrival of replacement CGM sensors will be in time and we’re good. We’re in automatic and I’m very pleased with the results. One less medical haggle to deal with.

My quarterly diabetic Podiatrist appointment is scheduled for tomorrow. During these appointments, my doctor thoroughly goes over my feet, between my toes, ankles and shins looking for anything amiss. He then clips my toenails, and an assistant smooths the nails with a soft Dremmel grinder. The whole process takes about half an hour and is accomplished every quarter. My toenails typically grow too much between appointments and I manually trim them myself at lease once.

Last, in the past I have suffered from dry skin as a result of diabetes. My GP in Corpus Christi recommended a prescription salve named Triamcinolone Acetonide Cream USP, 0.1%. It is white and really really works fast and great to alleviate the itching and sores diabetics are prone to from dry skin. Talk to your GP or dermatologist. It really really works for me.

As a side note, I had a major computer crash over the weekend. Bought a new mini computer, bought upgraded storage for it, cloned the M2SSD and added a 2TB SSD for additional storage. We are back up and running as if nothing happened. It helps to be an electrical engineer with lots of computer experience, even in this newer age of computing. And that’s a wrap for today.

Let’s face it. As the old saying goes, only death and taxes are certain. Certainly, at almost 85 years old, I am much closer to Gabriel than diapers (perhaps:-).) Bonnie Ware in 2019 released a book titled “The Top Five Regrets of the Dying.” Amazon has this to say about her writings: “After too many years of unfulfilling work, Bonnie Ware began searching for a job with heart. Despite having no formal qualifications or previous experience in the field, she found herself working in palliative care. During the time she spent tending to those who were dying, Bonnie’s life was transformed. Later, she wrote an Internet blog post, outlining the most common regrets that the people she had cared for had expressed. The post gained so much momentum that it was viewed by more than three million readers worldwide in its first year. At the request of many, Bronnie subsequently wrote a book, The Top Five Regrets of the Dying, to share her story.) (link)

Her copyright (all five are linked here) precludes bloggers and essentially anyone from quoting more than one of her five findings, so we’ll go with the first and most common:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me. She concludes her number one regret with “Health brings a freedom very few realise, until they no longer have it.”

This is really really impactful for those of us on dialysis. There are hidden impacts that are not well documented. For instance, I went to bed last night just after 9 PM, not because I was particularly tired, but because if I didn’t it would be late morning before my dialysis was completed. With the 10,000 4X dwell prescription I am currently on, and it’s not likely to get shorter, I’m spending between 10 1/2 hours and almost 11 hours just on dialysis itself. This does not include time to hook up and get off. All told, we’re looking at over 12 hours per day devoted to just dialysis. This severely curtails the time for other activities. So yes, my health has severely curtailed my freedom.

But I did not fall for doing only what others expected of me. A couple of life stories. For our thirtieth wedding anniversary, I bought my wife an arrest-me red Porsche as her own. She was not expecting this and it was not in keeping with us living our dream on a farm on a gravel road in Indiana. As part of the package, I also bought her a weekend on a local race track to learn how to take advantage of her Porsche’s power and handling. People who race Porsches were the instructors, and during breaks, they were on the track playing race day with their cars. I saw that they were having too much fun which caused me to become a Porsche racer also.

I still am a licensed Porsche racer to this day. While I’m not on the track anymore, the experience is vivid in my mind and incorporated into my driving skills even at almost 85. Live does go on; until it doesn’t.

One definition of assidius stems from the Latin word assiduus meaning busy incessant continual or constant. In the past, that’s what my alarms on the drain cycle have been. Not so much anymore.

I have incorporated a different methodology into my peritoneal dialysis prep routine. Every other night I inject 16 mL of Heparin into my 5000 mL bag. Since doing this, in the last 20 nights, I have only had two drain alarms, both on the first drain. This maps to only 10% of evenings that I have experienced alarms, much much better than previously when it was always over 50%. This is more than a five times improvement.

The rule of thumb I was given by my dialysis nurse for the amount of Heparin to use is 2 mL per 2000 mL of fluid. For my previous prescription of four cycles of 2000 mL per cycle, or 8000 mL total, this maps to 2X8 or 16 mL of Heparin. Now that I am using 2500 mL per cycle or 10,000 mL total, my Heparin dosage should be 2×10 =20 mL, up four mL from the previous dosage. Whatever, what I’m doing is working. So we’ll keep on keepin’ on for now.

Before I got started on my morning coffee on Monday, 11/27/2023, I received a call from my dialysis nurse, Cindy. Thanksgiving holiday is now a thing of the past. She informed me that “they” wanted to do another Adequacy Test before my next team meeting. One of the confounding variables is that I have only been on the new diuretic for a week or so and it probably hasn’t had time to really take effect.

So starting Wednesday morning I am to collect my urine, and once again on Wednesday night use all 2.5% fluids for my dialysis. I’m to show up at 0900 Thursday morning for labs, one more time.

Let’s hope that this time my wtK/V shows some movement UPWARD.

When you are on dialysis, you have to be prepared for change. Made me think of the US Marine saying, “To be prepared for anything by training for everything.” I think this is of particular application to those of us on dialysis. I ran this saying in a prompt by my AI Poe with the following results:

Assistant Poe

Title: Training for Dialysis: Be Prepared for Anything

Introduction:
Living with chronic kidney disease and relying on dialysis can be challenging. As patients, we often face unexpected obstacles and complications that require us to adapt quickly. In such situations, we can draw inspiration from the United States Marine Corps’ motto, “To be prepared for anything by training for everything.” By applying this mindset to our journey with dialysis, we can empower ourselves to overcome hurdles and maximize our quality of life. In this blog, we will explore how embracing the ethos of preparation and training can benefit individuals on peritoneal dialysis.

1. Cultivating a Mindset of Preparedness:
   The Marine Corps motto emphasizes the importance of training and preparedness. Similarly, individuals on dialysis can adopt a proactive mindset by educating themselves about their condition, treatment options, and potential complications. By staying informed and seeking knowledge, we become better equipped to handle unexpected challenges that may arise during our dialysis journey.
2. Adapting to Changing Circumstances:
   In the military, adaptability is crucial for success. Likewise, dialysis patients must be prepared to adapt to changes in their health, treatment plans, and lifestyle. As our bodies change and our dialysis efficiency fluctuates, it is essential to work closely with our healthcare team to adjust our treatment regimen accordingly. Regular communication with our nephrologists and dialysis nurses can help us identify potential issues early on and find effective solutions.
3. Embracing Continuous Learning:
   The military instills a culture of lifelong learning and skill development. Similarly, dialysis patients can benefit from continuously expanding their knowledge about their treatment modality, dietary requirements, and self-care practices. Staying updated with the latest research, attending support groups, and engaging in conversations with fellow patients can help us stay informed and empowered.
4. Building a Support Network:
   In the military, comradeship and teamwork are foundational. Similarly, individuals on dialysis can build a strong support network comprising family, friends, and fellow patients. Sharing experiences, insights, and challenges with others who understand our journey can provide emotional support and practical advice. Additionally, participating in support groups or online communities allows us to learn from the experiences of others and gain new perspectives.
5. Prioritizing Self-Care:
   Physical fitness and mental resilience are key aspects of military training. Likewise, dialysis patients should prioritize self-care to optimize their overall well-being. Regular exercise, adequate sleep, stress management techniques, and pursuing hobbies can help us maintain a positive mindset and enhance our quality of life.

Conclusion:
Living with peritoneal dialysis requires resilience, adaptability, and a commitment to self-care. By adopting the Marine Corps motto of being prepared for anything by training for everything, we can face the challenges of dialysis head-on. Cultivating a mindset of preparedness, adapting to changing circumstances, embracing continuous learning, building a strong support network, and prioritizing self-care are fundamental elements in our journey with dialysis. Remember, with the right mindset and support, we can overcome obstacles and lead fulfilling lives, no matter the challenges we face.