This past Thursday, I attended my monthly Dialysis Team meeting. Present were my Dialysis Nurse, nephrologist, dietitian, and Social Worker. As I stated in a previous blog concerning my lab results and the recent repositioning of my catheter surgery (11/4/2023), I was most interested in my wKt/V reading of 1.7 which went down and was below the desired two threshold, as well as how the three accesses in my stomach were healing.
Concerning the reduction in wKr/V, which is a measure of how well my dialysis is working, my nephrologist suggested we wait another month to ascertain what’s going on, as the lab value was based on data accumulated before my catheter was moved and repositioned.
Concerning the healing of the three accesses and the condition of my catheter port, upon visual examination, my nephrologist proclaimed that everything looked great, that the existing plastic covering of the surgical access ports would fall off in due course, and everything looked good.
The team was very pleased to learn that in the eight nights since repositioning my catheter, I have experienced NO drain alarms, and the amount of my microfiltration, the fluid drained out in excess of what is pumped in, seems to be on the rise. This indicated that the dialysis process is removing more excess fluid from my body, which is also being reflected in less swelling of my ankle areas. Good trend to have!
Lastly, I currently take a 0.25 mg dose of Calcitriol three times a week. Calcitriol is a man-made active form of vitamin D. Most people get enough vitamin D from sun exposure and fortified food products (such as dairy products and vitamins). Vitamin D helps control the parathyroid hormone and the levels of certain minerals (such as calcium and phosphorous.) Based on my lab results, the dosage was increased to five times a week.
Other than the above, I’m good to go, and I hope you readers are also!
In previous blogs, we have spec’d and described a UPS and a remote start, dual fuel generator for our Poor Man’s Generator System. We only need connection lines and one more hardware component, an ABT (Automatic Bus Transfer) switch, to complete our design.
For less than $50.00, Amazon sells the switch shown above. It has three connections: 1. The normal power line coming in, 2 A line from the new generator, and 3. A line going to the UPS into which your Liberty Cycler is plugged. See the lead graphic. This particular switch has an approximate switch time of 20 seconds.
In other words, You have your Cycler plugged into the UPS, which is in turn plugged into the Load Terminal of the ABT switch. You have your generator output plugged into the Master Terminal on the ABT. And lastly, you have normal wall socket power going to the remaining ABT terminal.
In normal operation, power for the cycler comes in the wall socket, through the ABT to the UPS, and thus to the Cycler. Should power sag or intermittently drop, the UPS will pick up the load independent of the ABT. Should the power drop, using the remote start option of your new generator, turn it on. Until you get your generator up and running, the UPS will keep the Cycler going for up to 30 minutes or so. As soon as the generator comes up to speed and is capable of carrying the load, the ABT will automatically switch over to generator power. Assuming you have set the ABT up so shore power is the primary power source, as soon as the electric company’s power comes back up, the ABT will switch to it. You will have to shut down your new generator then.
Depending on how long your power line runs from the generator to the UPS specs, what size extension cord do you need? For a relatively short run, say up to 50 feet, a cord with size 14 wire should be okay. Think of 12 gauge extension cords for longer runs to preclude too much line loss.
Those who are not “Poor Men” can always opt for the $15,000 plus Generac Whole House system. You have to dig a hole in your yard big enough to bury a 500-gallon propane tank (if you are not on city gas), and pay a professional to hook everything up. But it’s a nice system. For our home, we have a 13kw dual fuel generator that runs into our main breaker box via which we can power most everything in our home should the power go out. But it is a manual system not automatic like the Generac and does not have a remote start such as I spec’d for the above system.
In a previous post, we discussed and implemented a UPS for our Dialysis Cycler. The UPS spec’d will run the Cycler for half an hour max. In this blog, we will spec and design a system that will run a Fresenius Cycler for its entire 10-11 hour normal runtime unattended. That is, it will support an entire dialysis regimen if the power is out.
First of all to our specs:
It has to carry our load of 480 watts minimum
It has to be as quiet as possible, down in the 56-58 db range
It has to run on both propane and gas. Propane since its storage is effortless; gas because it is readily available. It would be nice if it switched seamlessly between the two fuel sources.
It has to be a remote start setup so we can set the generator up and start it from inside the house/area where the Cycler is for convenience. Remote start implies it is a battery-start generator.
It has to be reasonably priced and a known name brand with good reviews.
A generator that meets or exceeds all of the above requirements is the WEN DF452iX Super Quiet 4500-Watt Remote Electric Start Dual Fuel RV-Ready Portable Inverter Generator with Fuel Shut-Off and CO Watchdog available on Amazon for $788.35. I don’t mean to imply that this generator is the only or best one for this application; only that it meets or exceeds what I have spec’d.
Wen is a well-known name, the generator has a 4.9/5.0 rating from 20 reviewers and appears to be a solid contender for our application. It is dual fuel with automatic switching so you could run it for eight or more hours on gas and then have it automatically switch over to a 20 or 40-pound propane tank to finish up your dialysis run. In my case, I would run it entirely on propane because there are no storage or gumming problems with it compared to gasoline. Amazon sells a dual-tank bridal for about $50 that connects two tanks to a single 3/8″ propane fitting for the generator.
In my next blog, I’ll put together a complete system using the UPS, an automatic bus transfer switch, and this generator to spec a complete backup system for your Fresenius Liberty Cycler.
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.
Yesterday I had laparoscopic surgery to ascertain the status of my catheter and if catheter placement was causing or contributing to the excessive amount of drain alarms I have been receiving during PD. A laparoscopy is a type of surgery that lets a surgeon look inside your body without making a large incision (cut). It’s used to help diagnose and sometimes treat conditions that develop in your belly or pelvis. So I now have an additional small incision an inch or south toward my pelvic region from the catheter port which yes, is currently sore but not teeth-grinding sore. I can handle it. I have been told to cool it for 24 hours before resuming normal activities. You can rest assured my wife will enforce this restriction.
So what did the surgeon Dr. Tan find? He found that indeed the placement of my catheter needed to be altered; the end was formerly placed so as to partially block access. He moved “things” around and sent me on my way. For what it’s worth, I experienced no alarms last night.
For the record, we left our home in Pecan Plantation at 0830, checked in at the hospital at 0930, and were home by 1430. The whole operation went perfectly. The hospital even had bed warmers to keep patients warm while in their queue for their procedure. Everyone was friendly and helpful – it went the way you imagine things should go. I was really favorably impressed.
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.