This past Friday evening I was informed by my Dialysis nurse Cindy that “they” round Kt/V lab findings to the tenth decimal place. In the graph above, my previous reading was 1.44, which to one decimal place rounds to 1.4. My latest reading was 1.67 which rounds to 1.7 which is the lower bound for “concern.”
This means that at the present time we’ll continue along the path we are currently on. I have a team meeting next Friday which includes my Nephrologist, so of course this could change. But for now, there is a Dialysis God.
Also, my Phosphorus is still high, but has fallen from 7.1 to 6.4. We’re doing something right. Keep on keepin’ on.
The “If Then Else” statement is the most basic logical construct used to control the flow of logic. This conditional statement can be found in most programming languages. I am applying it to my current Dialysis Situation which follows:
On 11/30/2023 as scheduled I showed up with my fluids in hand to turn in for my Adequacy test. My dialysis nurse Cindy had a “sit down” with me and we discussed where I am and where we will go should the adequacy test not improve. Here’s what I found out: If Kt/V falls below 1.7, which mine has, to 1.56, and what we have tried to bring it back up to over 1.7 doesn’t work, then in all probability I need to go onto Hemo. Thus, If not over 1.7, then Hemo.
If I go on Hemo, I will stay with my current team at Fresenius Granbury, TX, undergo 4-6 weeks of training MTRFs, some with my spouse. They use the NxStage, System One S for home Hemo, which at this point is what I plan on doing if need be. It is a five day week, three hours per day activity. At some point I will need to have a Fistula placed in one of my arms.
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.
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.
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.
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.
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.
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.
In mid-December 1944, Allied forces were surprised by a massive German offensive through the Ardennes Forrest that created a “bulge” in the Allied lines. Caught in what would become known as the “Battle of the Bulge,” the 101st Airborne Division of the United States Armed Forces was holed up in Bastogne while German armored divisions encircled the town. Outnumbered, outgunned, and running out of food, ammunition, and medical supplies, the embattled assistant division commander, Brigadier General Anthony McAuliffe, faced bleak prospects.
On December 22, the American troops were sent an ultimatum from the German forces outside of the town, demanding “the honorable surrender” of the town within two hours. General McAuliffe’s reply was brief and succinct:
Why “Nuts!?” I received my lab results back from my most recent Adequacy Test, and once again they are Inadequate. See the graphic below:
In the chart above, my wKt/V has fallen from 1.56 to 1.44 despite increasing my dwell fluids to 2.5 L from 2.0 L. We are going the wrong direction people. I haven’t heard anything from my dialysis team as a result of this finding due to the Thanksgiving holiday in the United States but standby.
Another finding was also disturbing. See the graph below: My Phosphorus jumped from 5.8 to 7.1. Although the wheels appear to be falling off, Nuts! still applies. Reminds me of another story about the 101st Airborne at the battle above. When asked if they didn’t know they were surrounded by Germans their response was, “Paratroopers are supposed to be surrounded. That’s where we’re meant to be.” In other words, “Never ring the Bell!.”
In the video below, I show how we store and ensure we are using the dialysis fluids nearest to expiration. It pertains to those of us on Peritoneal Dialysis using the Fresenius Liberty Cycler products for treatment. It was shot using my Samsung S23 Ultra phone and edited using ByteDance’s CapCut free video editor. BTW, the parent company also has TikTok in its portfolio. CapCut is the best free video editor I’ve found. Enjoy the video:
While on dialysis, one of the important things is to have hobbies that keeps your mind active. I have several, one of which is this blog. Another is attempting to keep up with all of the new stuff that’s coming out as a result of artificial intelligence (AI). One of these new products is Create Studio 3. I made a short advert using this software. (It just crashed when I attempted to make a longer video BTW.) See it below:
Yesterday, 11/21/2023, as previously stated in Tuesday’s blog, I went to my dialysis center at Fresenius in Granbury, TX for the lab work associated with my latest Adequacy Test. While there, I was quizzed by my dialysis nurse Cindy as to how it was going since my PD fluid volume was increased to 10,000 mL from 8,000 mL, or to 2,500 mL from 2,000 mL per dwell. I informed her that I was doing fine and had noticed no difference in feeling in my stomach area and was feeling better overall.
She related to me an interesting story about one of her previous patients. Previous because he is dead.
One dictionary definition of “Discord” is a lack of agreement or harmony (as between person things, or ideas.) A previous patient was advised of the need to increase fluids from 1,800 mL to 2,500 mL but refused, stating that his stomach just couldn’t handle it. This, by the way, was based on no empirical evidence, just conjecture. He was a strapping six-plus footer that should have had plenty of room in his gut for increased fluid but refused. His plight was complicated by the fact that he had had Covid which severely impacted his lungs to the point that he was short of breath and was seeing a pulmonologist. The Discord between his state and prescribed dialysis treatment is obvious. He died as a result.
The lesson here is obvious also. Chances are your dialysis team is acting in your best interest and knows what they are doing, from empirical evidence if nothing else. Listen and weigh carefully their advice. It might just be the difference between life and death.
Today, 11/21/2023, I had my latest Adequacy Test at Fresenius in Granbury, TX. It will be a day or so before the lab results come back, and subsequent meetings with my dialysis team. Recall that I started feeling on the bum side, a microcosm of when I first Rang the Bell to start Peritoneal Dialysis. I tired easily, was rendered short of breath under moderate to light exertion, and knew something was not right.
As a first cut at alleviating this challenge, my dwell fluids were increased to 2500 mL from 2000 mL with the same number of dwells, four. I say first cut on purpose. We like to think that all things medical are absolute, if this, then that, but they are not. In fact, much of medical knowledge is a heuristic or a rule of thumb. They are based on practical experience and knowledge learned over time. So we are “trying” an increase of 500 ml because “experience” has shown that 250 mL isn’t enough.
Hopefully, in the next couple of days, I will be able to report that my wKt/V has increased toward the generally accepted goal of over 2.0 and we will be, from a lab perspective, in the green zone. I am feeling better day by day and have reported the same to my dialysis team.
Assistant Poe
