Last week we had several power drops and sags during a rain storm. My Cycler had been set up and rebooted because of the storms. I had to go through the entire setup again with no assurances that another storm wasn’t in the making which would have invoked the same scenario again. This is not unique to me. On several forums, people have reported either weak power grids that often sag/drop, or storm-related droppage.
There is a simple solution to this problem which I have instituted – that of employing an uninterruptible power supply., or UPS as they are most often referred to. What a UPS is, is a battery-powered circuit (called an inverter) that changes battery voltage (DC) to 115VAC or common US household line voltage. Now we have to ascertain what brand to purchase, and what size for our Cycler application.
I know from my background in electrical engineering that APC (American Power Conversion) is the go-to company for UPSs so I started there. What size/power level UPS to purchase was my next concern. I wanted the UPS to be able to cover two situations – 1. Rather short power sags or drops typical during storms, and 2. Give me enough time if needed to bring up our standby generator in case of catastrophic power failure.
First. The Cycler manual states the Cycler draws 480 watts max. This probably takes place as it is warming up the main tray solution bag and should drop to a lower steady state as the terminal temperature in the bag is reached. A rule of thumb in engineering is to double the requirements for a safety edge, so I specified the UPS at a minimum of 480 x 2 = 960 Watts.
The second requirement is that the UPS be able to run the Cycler long enough for me (or my caregiver wife) to start up our standby power generator system. I figured half an hour should be plenty as the standby generator is always ready to go.
APC sells a model XM1500M UPS that is 900 watts which is close enough to what I specified. It has close to the times two wattage and will run the Cycler load for close to half an hour. That is the model I purchased from Amazon ($189.95 + tax) and is now hooked up to my Cycler to prevent power outages. See picture below. FYI, it switches to UPS in 8-10 msec when power drops – that’s 8-10 thousandths of a second.
Coming up I intend to spec out a poor man’s generator system to support running a Cycler in case of prolonged power outages.
On October 25, 2023, I am scheduled to make a ten-minute presentation and serve on a panel about my PD journey during a Treatment Options Program conducted by Fresenius in Fort Worth, TX. It seems that this blog has made me well-represented in this community.
In assembling initial thoughts on how to approach an ad hoc ten-minute presentation, my thoughts turned to a tidbit I learned from US Navy SEALs while serving with them while I was going through Vietnamese Language School in Coronado, California. The SEAL Rule of 3 suggests giving your audience three key messages or pieces of information when explaining complex topics. Then, give them a break. The mind can only absorb three items at once. I followed a form of this sage advice all of my teaching career at Purdue University, having employed it in classes ranging from Freshman Entrepreneurship to PhD Global Marketing. It has never failed me.
As I pondered how to apply the Rule of 3 to this presentation challenge, I had an idea to see what my AI-assistant Poe might have to say about this application, the Rule of 3 to my dialysis journey presentation. So quizzed Poe with the following Prompt and results:
@poe Prompt: I am scheduled to make a ten-minute presentation to a group all interested in dialysis. I want to use the US Navy Seal Rule of 3 to communicate with them about me and my journey with peritoneal dialysis. Provide me an outline or 500-word blog entry on how to accomplish this.
Poe Assistant:
Title: Thriving with Peritoneal Dialysis: Embracing the Navy SEAL Rule of 3
Introduction: Greetings, friends of dialysis! Today, I stand before you to share my personal journey with peritoneal dialysis, a life-saving treatment that has empowered me to thrive despite the challenges. In this presentation, I aim to captivate your attention and communicate effectively by employing the Navy SEAL Rule of 3 – a powerful technique elite Navy SEALs use to convey information concisely and memorably. So, let’s dive in and discover the three key aspects of my journey with peritoneal dialysis.
Overcoming: The Battle Begins a. State the challenge: Begin by describing the initial shock and emotional turmoil that accompanied the diagnosis of kidney failure and the need for dialysis. b. Reaction and adaptation: Share your personal experience of accepting the reality and the determination that sparked within, propelling you to explore the available treatment options. c. Emphasize peritoneal dialysis: Highlight the unique advantages and benefits of peritoneal dialysis, such as flexibility, independence, and improved quality of life. Explain how this treatment modality became your pillar of hope and a catalyst for positive change.
Adapting: The Journey Unfolds a. Learning the ropes: Describe the learning curve associated with peritoneal dialysis, including the initial training process, the adjustment period, and the integration of dialysis into your daily routine. b. Overcoming challenges: Discuss the hurdles you encountered along the way, such as managing infections, maintaining a sterile environment, and dealing with potential lifestyle limitations. Highlight the strategies you employed to overcome these obstacles, emphasizing your resilience and adaptability. c. Achieving self-empowerment: Share how peritoneal dialysis gradually transformed from a daunting medical procedure into a self-managed routine. Discuss the sense of control, independence, and empowerment you gained as you became proficient in administering your treatments.
Thriving: A New Lease on Life a. Regaining normalcy: Illustrate how peritoneal dialysis allowed you to resume your daily activities, pursue your passions, and maintain an active lifestyle. Emphasize the freedom it provided in terms of travel and employment opportunities. b. Building a support network: Discuss the importance of building a strong support system, including healthcare professionals, fellow dialysis patients, and loved ones. Share how this network contributed to your emotional well-being and overall success. c. Becoming an advocate: Conclude by expressing your commitment to raising awareness about peritoneal dialysis and advocating for its benefits. Encourage the audience to embrace the Navy SEAL Rule of 3 in their own lives, helping them effectively communicate their stories and experiences to others.
Conclusion: In summary, my journey with peritoneal dialysis has been an arduous yet transformative one. By applying the Navy SEAL Rule of 3, I have shared my experiences of overcoming challenges, adapting to a new reality, and ultimately thriving with peritoneal dialysis. Through this presentation, I hope to inspire and empower others facing similar circumstances, demonstrating that we can conquer any obstacle and lead fulfilling lives with determination, resilience, and the right support.
And that, my readers, is a roadmap for my presentation provided by Poe, which is a very good starting point. Poe and other AI engines work, and you should be exploring them, too!
Monthly, those on Peritoneal Dialysis have labs taken the results of which are discussed during our dialysis team meeting. I had labs drawn last Wednesday, and am scheduled to meet with my dialysis team at 0830 this Thursday. The results determine whether the current dialysis prescription is working, how well, and what it might be going forward. It is an important activity in the life of a peritoneal dialysis patient.
With these thoughts in mind, I always pour over my results to see what and where improvement might be made, and where I’m failing. I’ve incorporated my lab results into the 4×14 table below. The first column is what was measured, the second is the 10/3/2023 result, the third column is what it was the last lab for trending info, and the last column is lab specifications.
What
10/3/23
Prior
Range
Albumin
3.7
3.4
>=4
nPCR
0.79
0.97
>=2
Potassium
4.2
4.2
3.5-5.5
wKt/V
1.7
1.86
>=2
Calcium
8.0
8.5
8.5-10
Phosphorus
5.4
5.4
3-5.5
iPTH
592
380
160-720
Glucose
96
121
70-160
A1c
5.8
6.3
<7
Cholesterol
148
152
<200
Triglyerides
64
64
<150
Creatinine
7.69
7.27
eGFR
6
Of all the readings above, the ONE that concerns me the most is wKt/V which measures whether or not I am getting enough dialysis to adequately clean my blood. For reasons not known to me, it has dropped; not a lot, but dropped. Why? Of all the readings above the ones that I am most pleased with relate to diabetes; glucose = 96 an hour after having breakfast is outstanding. An A1c of 5.8 suggests tight diabetic control which is what I’m striving for as should any diabetic patient. My CGM is really helping out in this area.
So my one point of discussion with my dialysis team next Thursday will center around two aspects: 1. My recent surgery to reposition my catheter and results (to date no alarms now), and 2. Should I be concerned about the reduced wKt/V reading?
While prepping for my evening shower last Thursday night, my wife noticed a circular pad around my catheter port entry area. I had not noticed it before and had never previously had such a device after catheter placement either. As it was installed, I could not conduct the normal aseptic routine I follow after showering to safeguard my port. Those of us on PD live in constant fear of screwing up and getting something, outside or inside our bodies infected.
I sent an email to my dialysis nurse with pictures of the port and she immediately called me back and said not to worry, that the patch was just a temporary protection against infection, and I should remove it in due course. Since I have never encountered such a patch previously, and I have one now that’s coming off shortly, this blog provides readers background on what is named a “biopatch.” I have embedded a video at the end which tells you all you need to know about the biopatch.
See the three pictures below: The first picture is an overall of my stomach area, showing the biopatch surrounding my catheter at entry via the port in my stomach, the second picture is a closeup of my catheter/port area, and the third picture is a closeup of one of the three “keyholes” my surgeon used to go inside my stomach area to reposition my catheter to preclude drain issues.
Yesterday I informed you that my surgery appears to date to have been successful although one night without drain alarms is not a trend. The purpose of today’s blog is to fill in some of the holes in yesterday’s somewhat cryptic blog. Perhaps you will pick up some pointers that could help you along the way.
The hospital where our surgeon, Dr. Tan has privileges is Texas Health Harris Methodist Hospital. They sent out a request for me to fill in and verify gobs of patient information prior to my visit. I complied and when we arrived to check in, there was no wait. I had to sign one HERPA form for Tricare for Life and provide an ID (Texas Driver’s License), my Medicare card and military ID (for Tricare) and that’s it. We were then immediately escorted back to the surgery prep area where I spent almost the next hour being prepped for surgery.
During this prep, I was intensely quizzed as to the meds I was taking, and WHEN I last took them. Heads up: know your meds and schedule for taking them. This was important to them because I was told NOT to take any meds the morning of surgery except a Satin. Be advised I received a phone call from a nurse at the hospital about a week before my scheduled surgery during which we went over my meds in detail. Throughout the check-in and prior to actually going into surgery, there was repeated checking of details with different people with different skill sets as they made their presence known. The last questioning was as I was being moved from the traveling gurney to the operating table where I was for the umpteenth time asked what my name and date of birth was, my doctor’s name, and the day’s procedure.
I was told to take a shower the morning of the surgery which I did. During prep for surgery, I was provided a medicated heated towel and instructed to wipe down my frontal area to make certain it was ultra-clean.
We were informed that I would be in recovery after surgery for an hour and a half; I was in recovery for 20 minutes before I was in a wheelchair and out the door. The point is, there are estimates and there are estimates. Hospitals seem to have their own concept of time as do the doctors that are Gods therein.
My wife received a constant flow of texts, upwards of ten, during my surgery progress, keeping her updated on my status. At the completion of my surgery, she received a text from Dr. Tan that the surgery was successfully completed and he would be calling her which he did. Dr. Tan explained to my wife what he had found, what he had done to correct it, and post-surgery procedures. She commented to me that she almost had too much status information. My heads up here is that I know many people in our age group do not text. If you fall into this category, you are potentially missing out on an important near real-time data source. This method worked really well for us.
Started off Tuesday/yesterday with a monthly lab visit with my friendly and supportive dialysis nurse. Nothing out of the ordinary except she removed the remaining obvious stitches from cancer surgery on the back of my head. They were supposed to have been removed in the middle of last week but it didn’t happen. Turns out phoned the local/Lafayette, IN VA, and left a message with the nurse’s station about having them removed there but did not receive a return call. Your VA in action supporting your veterans. She did provide me with a handout that described a new injection dongle for our dialysis fluid bags that is easier and more receptive to use. It has a larger look like a blue ring to better be able to hold the entryway for injection into the bag.
Next stop, my dermatologist where basal cancer was removed from my left cheek. A pretty large slice was taken requiring 12 stitches. The numbing hasn’t worn off yet so pain is minimal. Based on past experience, I will be taking a couple of Tylenol before bed.
Wednesday morning we’re off to Fort Worth for surgery to ascertain what is going on with my catheter that perhaps is causing drain problems. In the next blog, I will no doubt have a sore stomach to go along with my sore check. Stay tuned.
There is a phrase “Screwed up as Hogan’s Goat.” The phrase Hogan’s goat refers to something that is faulty messed up, or stinks like a goat. The phrase is a reference to R.F. Outcault’s seminal newspaper comic Hogan’s Alley, which debuted in 1895. The title of the strip changed to The Yellow Kid the following year.
CVS, a national drug store chain in the US, personifies Hogan’t Goat. Let me explain. A couple of weeks ago my wife and I, using the CVS App, made appointments to receive the fall flu shot, the new COVID shot, and the RSV shot. When we arrived for our appointment, we were told they were out of the RSV shots, it would be $200 each for the COVID shots, but we were OK for the fall flu shot which we both received. We passed on the $200 for each COVID shot as the news had been blaring about them being available and free for those of us on Medicare.
The next day I phoned CVS and asked them WTF was going on with the COVID shots. I was informed, the very next day mind you, that our military insurance, TriCare for Life, was now covering the COVID shots. Like this took place overnight!???
Back to the CVS app where I made appointments for my wife and I to receive both the COVID and RSV shots on Monday, 10/2/2023. I called CVS on 10/1/2023 and they assured us that the shots were and would be available for our appointments. So far everything seems to be working – Until!
Until we turned up at CVS in Granbury for our shots. The pharmacy area looked like Grand Central Station on Friday afternoon at 5 p.m. There were people everywhere. We showed up at 1020 for our 1030 appointment, and at noon, yes 1200, we walked out with shots in our arms, a full hour and forty minutes after showing up for our appointments. Seems that some people like us signed up for appointments online which went into their computer base. Some called in for appointments that went somewhere else. Some just showed up. Some made appointments in person for a later date. All of these inputs were not merged into a time-sensitive file so who knows how the queue was established and managed, or mismanaged as the case may be?
The sad part about the mismanaged mess is I saw no indication that anything was going to be done about their inaptitude to preclude similar situations in the future. Luck for us, we now have our shots until next year rolls around. I think we will wait until our local Pecan Plantation pharmacy has the shots to preclude being part of CVS’s Hoagan’s Goat show again. Caveat Emptor!
We’re back home from a week’s trip to visit with my wife’s sisters in Indiana – Central Indiana to be specific, in and around Lafayette, Indiana, close to Purdue University. To say that time changes things is an understatement. Every time we go back, which is infrequently, we cannot believe how much things have changed – traffic, crowds, people, infrastructure, route changes, etc. Like being in an alien world.
Background: In preparation for our trip back to Indiana, a trip of roughly 1000 miles each way, we divided my PD supplies into 7 boxes; two boxes contained supplies for two nights, four boxes contained supplies for one night, and one box contained cassettes. We divided the trip up so we traveled roughly halfway each night, 486 miles as it turns out. So the night on the road we used a single box, and the three nights in Lafayette we used one double and one single, and coming back one single. Upon our return home, we had a single and a double as backup. This worked out well.
Some lessons learned:
Aseptic procedures take twice as long while traveling and are probably more than twice as important. At home, all your aseptic gear is laid out in an orderly fashion. While traveling it is a mess stuffed into your luggage almost at random, especially after a couple of nights on the road. Anything you can do to organize this area is very lucrative.
I have gained about four pounds traveling for one week. En route, we grabbed what we could mostly while stopped for gas. Once we landed in Lafayette, every interface with my wife’s sisters and their families revolved around food. We were literally eating breakfast, getting up from that, and going directly to a lunch date and after a short break to supper. It was a never-ending parade of food. That’s the way it was and I don’t see any way around such social occasions. It is what it is.
We stayed going and coming in a Hilton Inn Express in Springfield, MO. While in Lafayette, IN we stayed in a Drury Inn. The Hilton was somewhat long in the tooth in comparison with Drury with Drury’s ambiance superior as was their food and in general their welcomeness. I would suggest Drury given the choice by far. Prices for an overnight stay were in the $185 per night for Drury in Lafayette and $134 per night for Holiday Inn. Looks like you get what you pay for.
The largest single expense incurred for our week away from home was the boarding of our Golden Retriever Dickens. He was boarded from Saturday to Saturday at a cost of $600 including tip. We supplied his food. You need to factor this cost into your budget for traveling.
We used whatever route our BMW X5’s GPS suggested we take so we hit several tolls. We have the NTTA automatic toll sticker on our car so we did not have to stop to pay tolls. Interestingly, tolls in Oklahoma were also automatically paid via our sticker. Point to note.
We have lots of “stuff” to contend with in the coming week. Monday we are scheduled for COVID and RSV shots at CVS, assuming they have the shots in hand. On Tuesday I have a dialysis lab and will return the cycles case that Fresenius lent to me for our travels along with a dermatology appointment to remove a Basail Cell cancer from my check. Wednesday I have surgery scheduled to have a look-see at my catheter to ascertain if there is any blockage or placement issues causing my incessant drain alarms.
As the song below attests, “Don’t tell me I’ve nothing to do!”
A commentator on this board and I have been comparing notes on our individual treatments. While this is instructive and interesting, you have to keep in mind that we are each individuals into ourselves and it’s easy to fall into the trap of comparing apples to oranges. The following table depicts differences and similarities in our PD:
My Readings
His Readings
UFiltration
4-800 mL
11-1300 mL
# Cycles
4
5
Dwell
120 minutes
90 minutes
Total Time
10-5 to 11 (Hr-min)
10-5 to 12-15
Comparison table me to him
At first glance, it would appear that “him” is pulling lots more fluid out via PD compared to me as indicated by the comparison of the UFiltration (microfiltration) numbers. But this is misleading. What we don’t know and can’t compare is how much urine each of us is still making via normal kidney function. I still pass a plausible amount of urine naturally; does he? Something else we don’t know is what percentage solution each of us is using. The more concentrated the solution (we have a choice of 1.5, 2.5 and 4.25%), the higher the expected microfiltration.
My prescription has me on dwell for a total of 4 times 120 minutes or 480 minutes, while “him” is on dwell for a total of 5 times 90 minutes or 450 minutes. So I have fluid in my stomach for 30 more minutes, all else being equal. This is where things get a little bit more complex to describe and understand.
There is a concept in peritoneal dialysis called Transport, and Transport is measured by something called PET. To help explain these concepts, I turned to Poe with the following result:
Poe Assistant:
In peritoneal dialysis, the transport level refers to the permeability of the peritoneal membrane to solutes during the dialysis process. The peritoneal membrane acts as a semi-permeable barrier between the blood vessels and the dialysis solution (dialysate) that is infused into the peritoneal cavity. The transport level is determined by the characteristics of the peritoneal membrane, which can vary from person to person. There are three main types of transport levels in peritoneal dialysis:
High Transporters: High transporters have a peritoneal membrane that is highly permeable to solutes. This means that solutes, such as waste products and excess fluid, can easily pass through the membrane from the blood vessels into the dialysate. High transporters may require more frequent or longer dwell times during peritoneal dialysis to adequately remove waste products.
Low Transporters: Low transporters have a peritoneal membrane that is less permeable to solutes. In these individuals, the removal of waste products and excess fluid during peritoneal dialysis may be less efficient. Low transporters may require longer dwell times or more exchanges to achieve adequate dialysis.
Medium Transporters: Medium transporters have a peritoneal membrane with intermediate permeability. Their peritoneal membrane allows for a moderate transfer of solutes between the blood vessels and the dialysate.
The transport level is assessed using a test called the peritoneal equilibration test (PET). This test involves measuring the concentrations of certain solutes in the dialysate at different time points during a dwell period. The results of the PET help determine the transport level of an individual and guide the prescription of peritoneal dialysis.
By tailoring the peritoneal dialysis prescription to an individual’s transport level, healthcare providers can optimize the effectiveness of dialysis treatment and improve patient outcomes.
I have what is considered to be a LOW TRANSPORT peritoneal membrane. Without knowing what “his” transport is, we can’t compare “his” dwell times or total times to mine. If we did, it would be comparing apples to oranges and we don’t want to be guilty of that, do we?
A Michigan Medicine study found that the longer an individual has type 2 diabetes, the more likely they are to exhibit changes in brain structure, such as decreased cortical thickness and gray matter volumes. Despite no discernible difference in cognition between those with and without diabetes, complications like chronic kidney disease and vascular damage in diabetes are linked to these brain changes. They also note that diabetic complications increased the odds of developing a cognitive disorder by 2.45 times in 40 to 60-year-olds.
So what is being implied herein? Type 2 diabetes -> brain changes -> also kidney functions -> plus other externalities -> and cognitive functions, i.e., how well our brain works? We already have cited research in previous blogs associating CKF with diabetes. It is a given. Therefore, if diabetes is adversely affecting cognition, then diabetes leading to CKF also imparts to those on dialysis as a result of CKF as potentially having cognition impacted as a comorbidity.
Impact on Cognitive Function: The impact of kidney disease on cognitive function can manifest in various ways. Studies have shown that individuals with kidney disease may experience:
Slowed Processing Speed: Cognitive processing speed, such as the ability to quickly understand and respond to information, may be impaired in individuals with kidney disease.
Reduced Attention and Concentration: Difficulty focusing, sustaining attention, and maintaining concentration are common cognitive challenges observed in some individuals with kidney disease.
Memory Problems: Kidney disease may affect different aspects of memory, including both short-term memory and long-term memory. This can manifest as forgetfulness, difficulty retaining new information, or trouble recalling past events.
Executive Function Deficits: Executive functions, which include skills like planning, organization, problem-solving, and decision-making, may be compromised in individuals with kidney disease.
Increased Risk of Cognitive Disorders: Research suggests that kidney disease, particularly in the presence of diabetes and its complications, may increase the risk of cognitive disorders such as dementia and Alzheimer’s disease.
Take it on board: It’s bad enough to experience CKF resulting in the need for dialysis. In the presence of diabetes which is highly likely, it is a double-edged sword. Perhaps having a “big brain” before onset is helpful?
