After about fifteen days of no cycler alarms since the operation to move my catheter to a more lucrative position, alarms are back with a vengeance. The past couple of nights, I have experienced drain alarms on the first drain cycle, continuing through the third. I didn’t get up soon enough Saturday morning and had an alarm on the fourth and last drain cycle.
Let me explain for those not on PD in a little more detail. The Cycler is a computer-controlled machine that interfaces with patients via a cassette. The cassette is made of plastic and has numerous plastic tubes with quick disconnects that interface with the fluid bags used to contain special fluids that are pumped into the peritoneal encased stomach region, allowed to dwell there, and pumped back out on a regular schedule during the night. One plastic tube interfaces with the catheter in my stomach.
For me, 2 liters are pumped in, dwell in my stomach for two hours, and then are pumped back out (drain.) For me, this is accomplished four times during a night’s treatment. If, for some reason, the fill or drain is being accomplished slower than the parameters baked into the Cycler’s setup, the Cycler sounds a gut-wrenching alarm. The patient has to get out of bed, go to the cycler, and press the OK button for the Cycler to continue the alarm cycle.
Alarms are NOT a problem unique to me. They are widely reported wherever there are open discussions about peritoneal dialysis and are surmised to be caused by faulty Liberty Cycler design by Fresenius. Why else would their PR brag that the new, forthcoming cycler replacement has fewer alarms?
It would appear that the position within my stomach of the drain end of my catheter has changed since my surgery to reposition it properly. Now I’m back, at least for the past several nights, at experiencing what my dialysis team refers to as “positional” problems. That is, the cycler throws alarms depending upon your posture in bed or other such considerations. Once again, sitting erect on the side of the bed after an alarm or standing up alleviates the situation, and the drain cycler is successfully completed.
This portends to be a MAJOR setback! Stand by for more data as it evolves!
Sad but true; those of us on dialysis still have to contend with all the other health issues that come with maturity. That is, getting older.
On Wednesday, I had about 12 stitches removed from the back of my head where Squamous Skin Cancer had previously been removed. The subsequent lab report showed the area to be clear of any cancer, so I’m finished with that for the time being. I’m certain some form of skin cancer will pop up in my head area in the future. It always has in the past. Only death will break this cycle.
Yesterday, I had an appointment with my Cardiologist. Recall that in July 2015, I underwent a triple bypass and have been seeing a heart specialist regularly as preventive medicine. While in the doctor’s office, my blood pressure was 105/65. So much for white-coat syndrome. All checked out great heart-wise, so I don’t have to have another such appointment for eight months. Typically, I would have had a Coronary Angiography (a procedure that uses a special dye (contrast material) and x-rays to see how blood flows through the arteries in your heart) by now, but that has been terminally postponed due to my kidneys and age.
It has been fifteen days since I had the operation to reposition my catheter. During this period, I have not experienced any alarms. So something is working! I also have noticed that I am experiencing a much higher rate of removal of liquids during my peritoneal dialysis. Recall that the Liberty Cycler each morning reports via a screen reading “microfiltration.” This is the amount of fluid removed in excess of that put in during the PD process. It is now consistently running over one liter, which is great. In conjunction with this, since my trip to Indiana, my weight has gone from the 154 lb range back down to 148. This is due to actual weight loss and pulling more fluids out during PD.
During my PD training, I was instructed to religiously check the expiration dates on the dialysate solution bags to make certain they were current. But did you know that many of the disposables we obtain from Fresenius also have expiration dates clearly marked on the containers? For instance, the box of Staysafe Caps I am currently using has an exp date of 2023-11-30. The Alcavis 50 has an exp date of 2024-11-27. The Aniosgel 85 NPC has an exp date of 03/2024. Lastly, the cassettes I’m using have an exp date of 2026-04-30.
On October 11, 2023, MarketWatch, among many other news outlets, reported the trial success of Novo Nordisk’s hit drug Ozempic against kidney failure. Fresenius shares dropped by almost one-fourth as a result. Luckily, we sold our 500 shares of Fresenius (FMS) back on August 11, 2023, when it was trading at $26.16 for over $4000.00 capital gain.
You may read the original Marketwatch article cited here, and more general reporting at the link in the lead sentence. The point of this short blog entry is to apprise readers of changes afoot in the dialysis arena. The train is coming!
A current “Fellow Traveller” to this blog recently traveled via air from his residence in North Carolina to Houston, Texas. This is what he informed me via email about his trip:
“Made it to Texas. Airline handled our cycler and a suitcase of supplies for free without even looking at letter Doctor had written. Put priority tag on them. Got to hotel about 8pm. … Hotel said our boxes had arrived. When we went through them found no cassettes. Called our hot line number they said nothing we could do about it then. To call first thing in morning. Called and found out the cassettes were back ordered. They are suppose to be here by 10am. So I had my first night since July 2023 without dialysis.”
In a follow-up email, he provided the following details:
“United out of Raleigh to Houston. I found them extremely helpful. I have to have a wheelchair to get through airports due to my breathing problem. They were really helpful also (assume he means airport people.)”
What can/should we learn from his recent traveling experience(s)?
It appears airlines and airports are sympathetic to medical equipment users in that they flew his cycler (recall it is housed for travel in a huge suitcase-type container) and a separate container of related supplies. However, this is to be expected actually. In 2022, the US Department of Transportation (DOT) issued the following Bill of Rights for Disabled Travelers: “The bill of rights includes the following: the right to be treated with dignity and respect, the right to receive information about services and aircraft capabilities and limitations, the right to receive information in an accessible format, the right to accessible airport facilities, the right to assistance at airports, the right to assistance on the aircraft, the right to travel with an assistive device or service dog, the right to receive seating accommodations, the right to accessible aircraft features, and the right to resolution of a disability-related issue.”
Note the Bill of Rights includes “the right to travel with an assistive device.” The Fresenius Liberty Cycler is an assistive device that replaces normal kidney function when in use, so it broadly falls under this directive IMHO.
Despite “doing everything right,” a major snafu still precluded dialysis treatment. It is totally not fathomable by me how Fresenius could have something as central and critical to peritoneal dialysis as cassettes not being available and, further, that they seem cavalier about providing same to a patient. Having said this, the cassettes were delivered the next day, so he lost but a day of treatment. This could still adversely affect his next wKt/V readings (am I getting enough dialysis?).
As I recently discussed in this blog, my wife and I recently traveled to Indiana from our home in Granbury, Texas, and elected to drive the 2000-mile round trip journey to preclude this very thing. It cost more and certainly took more time, and was potentially more dangerous, but all our dialysis supplies arrived with us. Take your pick.
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?
