After not hearing from the Fort Worth General Surgeon’s office that is supposed to be scheduling me for a look-see at my catheter, I called them this morning. I was informed that indeed I was on their schedule for surgery by Dr. Tan at 1130 hours on 10/04/2023. Recall that this is in connection with the plethora of slow drain issues I have been experiencing from the get-go with the Fresenius Liberty Cycler. Obviously Dr. Tan is a very busy surgeon scheduling me as far out as his office did. Luckily, I am not in extremus.
A while back I posted a video walk-around of the storage areas in our home which house my Peritoneal Dialysis supplies. Today we had our monthly delivery by Fresenius and I thought it would be of interest to view what our storge looks like “full up.” By full up I mean we have stored a month’s supply plus a could of weeks which is what is recommended. The video won’t win any Pulitzer Prizes but here it is:
I have been using the newly replaced Fresenius Liberty Cycler long enough now to be able to make meaningful comparisons to the previous, alarm-prone cycler I was stuck with for so many months.
Before we jump into any data, a few comparisons:
The new cycler is much much quieter and faster. Faster how? My total time on the cycler which I log every morning has reached a low of 10 hrs 5 minutes on two occasions.
While I have experienced a few alarms, I do not have to get out of bed and hit OK twice to silence them. After a warning alarm they fade into the background on their own.
After alarms, it seems to take forever for the old cycler to resume drain activity. It appears to me that the new cycler picks up the pace much quicker.
Some data: For the past 12 nights I have experienced alarms on 3 of 12 nights, so 9 out of 12 or 75% of nights I have had no alarms. I have experienced 5 cyclic drain alarms out of 36 possible, for a 31/36 or 86% of cycles with no alarms.
The previous 12 nights on the old cycler 9 of 12 nights I experienced alarms, or 3/12 or 25 % I did not. During this same period, I had 17 cycle alarms out of 36 possible which maps to 19 of 36 no alarms on a cycle basis for 52%.
Now comparing data in the paragraphs above of old versus new, I had three times as many days of alarms, and 5 versus 17 alarms which is over three times as many. So it’s safe to say my new cycler is a least three times better at not throwing alarms than my old cycler. This comparison completely discredits the stand taken by Fresenius “tech support” and the faceless entity “Susan” who flagrantly blocked my receipt of a replacement for months. Shame on you!
Paul Kix in writing about the 1963 Birmingham Campaign that shaped the course of the Civil Rights Movement in the USA, coined the phrase “You have to be prepared to die before you can live.” I am of the mind and strongly take the position that this is equally true of accepting and becoming a successful dialysis patient. Let’s delve deeper into the concepts embodied in the phrase “You have to be prepared to die before you can live.” and how they apply to those of us on dialysis or contemplating doing so.
The concept “You have to be prepared to die before you can live” encapsulates a profound and thought-provoking idea about personal growth and living a fulfilling life. At its core, it suggests that true transformation and living authentically require a willingness to let go of old patterns, beliefs, and attachments, even if it feels like a part of oneself is dying in the process. Such acceptance and transformation of personal thought are also the basis for successful dialysis.
To fully grasp the meaning of this concept, it’s important to explore its various dimensions:
Letting go of fear: Death often symbolizes the ultimate fear and uncertainty. To truly live, one must confront and overcome their fears. This means embracing the unknown, taking risks, and pushing beyond self-imposed limitations. By being prepared to face the possibility of “dying” in a metaphorical sense, individuals can break free from the constraints that hold them back and discover new paths of growth. FUD, Fear Uncertainty, and Doubt plague those new to the thought of Dialysis. They lose sight of or never envision the thousands of other mere mortals who have successfully scaled the dialysis mountain.
Shedding the old self: Personal transformation requires a shedding of old identities, beliefs, and behaviors that no longer serve one’s growth. This can be a challenging and uncomfortable process, as it often involves stepping outside of one’s comfort zone and reevaluating deeply ingrained patterns. By metaphorically “dying” to the old self, individuals create space for personal evolution and the emergence of a more authentic and fulfilling way of living. My experience in researching the dialysis forums is that those new to the concept of dialysis do not and often cannot see their way clear to a new life in which dialysis is often at the center. Rather than ask what can’t I do anymore, ask why not and what can I do.
Embracing impermanence: The concept also highlights the transient nature of life. It reminds us that everything is impermanent, including our own existence. By acknowledging the impermanence of life, we can cultivate a deeper appreciation for the present moment and the experiences we encounter. This awareness can motivate us to make the most of our time, pursue our passions, and nurture meaningful connections with others. Even saddled with dialysis, it behooves us to “seize the moment.”
“Seize the moment” comes from “Carpe diem,” a Latin phrase coined by the Roman poet Horace in 23 BCE.
In his work Odes, Horace says, “carpe diem quam minimum credula postero,” which literally means, “pluck the day, trusting as little as possible in the next one.”
Translation? To seize the moment can mean many things! Things like:
∙ Expressing gratitude for the present — for your life, the lives of others, and all the good in this world
∙ Saying “yes” to good opportunities that come your way
∙ Embracing your inner power, and creating opportunities of your own
∙ Going after your goals, even when you’re afraid
Overcoming attachment: Attachment to people, possessions, or outcomes can create emotional dependence and restrict personal growth. Being prepared to let go of attachments allows individuals to cultivate a sense of inner freedom and resilience. It liberates them from the fear of loss and empowers them to live fully in the present moment, without being weighed down by the past or anxiously fixated on the future.
Embracing mortality as a catalyst for living: Recognizing the inevitability of death can serve as a powerful catalyst for embracing life’s possibilities and living with intention. Contemplating the finite nature of existence can evoke a sense of urgency to make the most of every moment, pursue meaningful goals, and prioritize what truly matters. It encourages individuals to align their actions with their values and aspirations, leading to a more purposeful and fulfilling life.
In summary, the concept “You have to be prepared to die before you can live” invites us to embrace change, face our fears, let go of attachments, and fully engage with the transient nature of life. By metaphorically dying to old selves and embracing the impermanence of existence, we open ourselves up to personal growth, authenticity, and a deeper appreciation for the richness of the present moment.
And that boys and girls, applies more than equally to those of us on dialysis! Never ring the bell! (Poe AI assisted in the writing of this blog with the Prompt captured in the lead graphic.)
During the process of troubleshooting drain problems with my previous Liberty Cycler, I had x-rays of my stomach area taken, and read by a radiologist, with the results forwarded to my nephrologist. All pretty standard procedure. In referring these tests to the specialist who initially implanted my catheter for further evaluation and possible repositioning my catheter to help alleviate possible drain obstruction(s), the results were forwarded to this specialist, Dr. Tan in Forth Worth. I am in the process of getting on his schedule for a look-see at my catheter placement. Hopefully this week I will have a date.
As part of this back-and-forth communication between my dialysis team at Fresenius Granbury and Dr. Tan’s office in Fort Worth, my dialysis nurse texted me that they had sent Dr. Tan’s office “a copy of the KUB.” I had never heard of the term “KUB” so I fired up my faithful AI companion, Poe with the results below. Now all of us know what a KUB test regarding dialysis is.
Poe (The Prompt I used is the lead graphic to this post.)
In the context of dialysis patients, a KUB refers to a radiographic imaging procedure called a Kidneys, Ureters, and Bladder X-ray. It is also known as an abdominal X-ray or a plain film of the abdomen.
The purpose of a KUB for dialysis patients is to visualize the kidneys, ureters, and bladder to assess their size, shape, and position. This imaging technique helps healthcare providers evaluate the condition of these organs and detect any abnormalities that may affect dialysis treatment.
During dialysis, the kidneys’ primary function of filtering waste products and excess fluid from the blood is partially or completely impaired. As a result, dialysis machines are used to perform this vital task. However, it is important to monitor the condition of the patient’s kidneys and urinary system to ensure proper functioning and identify any complications.
A KUB X-ray can provide valuable information to healthcare professionals. It can help identify kidney stones, which can hinder the effectiveness of dialysis treatment or cause pain and discomfort. It can also reveal the presence of urinary tract infections, bladder abnormalities, or other issues that may affect dialysis or require additional medical interventions.
By obtaining a clear image of the kidneys, ureters, and bladder, healthcare providers can make informed decisions regarding a patient’s dialysis treatment plan. They can assess the need for additional interventions, such as medication or surgical procedures, to address any identified complications.
It’s important to note that the KUB X-ray is just one diagnostic tool among many used to evaluate dialysis patients. The specific tests and imaging studies recommended may vary depending on the patient’s individual circumstances and the judgment of the healthcare team. It’s always best to consult with healthcare professionals for personalized advice and information regarding a patient’s condition and treatment.
Last week my wife had an appointment with her GP to discuss her hypertension. During the conversation, inter alia, she commented in passing to her GP that I was on peritoneal dialysis. His response was somewhat baffling to me: “You know dialysis does not replace many of the functions of the kidneys.” When my wife related this interface to me, I immediately thought, “What Functions?” In all my training with Fresenius, dialysis research, and discussions with dialysis experts this subject had never been even hinted at let alone broached!
With my research assistant in hand, I wrote the following Prompt with the following results. Please, those on PD or considering PD read on. The AI-provided response sheds light on why my Dialysis Team is so intent on many of the lab results and also on other aspects of PD. By the way, I canceled my subscription to ChatGPT from OpenAI because readily available AI sources are at the forefront. In this instance, I am using my “new” go-to AI assistant, Poe, from Poe.com. I am running the Android App version.
Prompt: A natural kidney performs many functions. Explore the functions that ARE NOT addressed by peritoneal dialysis.
Poe AI Assistant’s Response:
Peritoneal dialysis is a form of renal replacement therapy that helps remove waste products and excess fluid from the body in individuals with kidney failure. While peritoneal dialysis is effective in addressing some aspects of kidney function, there are several functions of the natural kidneys that it does not fully replicate. Here are some functions that are not addressed by peritoneal dialysis:
Hormone Production: The kidneys play a crucial role in hormone production. They produce erythropoietin (EPO), which stimulates the production of red blood cells in the bone marrow. Peritoneal dialysis does not produce EPO, so patients may require additional medications or injections to maintain adequate red blood cell production.
Vitamin D Activation: The kidneys convert inactive vitamin D into its active form (calcitriol). Active vitamin D is essential for the absorption of calcium and phosphorus from the intestines and the regulation of bone health. In peritoneal dialysis, the kidneys’ ability to activate vitamin D is impaired, leading to the potential for vitamin D deficiency and subsequent bone problems.
Acid-Base Balance: The kidneys help regulate the body’s acid-base balance by excreting hydrogen ions and reabsorbing bicarbonate ions. When the kidneys are not functioning properly, acid-base imbalances can occur. Peritoneal dialysis primarily focuses on fluid and waste removal and may not adequately address acid-base imbalances, requiring additional interventions or medications.
Electrolyte Regulation: The kidneys play a vital role in maintaining the balance of electrolytes such as sodium, potassium, calcium, and phosphate in the body. Peritoneal dialysis helps remove some electrolytes, but it may not provide the same degree of fine-tuned regulation as healthy kidneys. Frequent monitoring and adjustments in diet or medications may be necessary to maintain proper electrolyte balance.
Blood Pressure Regulation: Healthy kidneys help regulate blood pressure by controlling the balance of water and sodium in the body. In peritoneal dialysis, blood pressure management may be more challenging, and patients may require additional medications to control hypertension.
Toxin Clearance: While peritoneal dialysis effectively removes waste products from the blood, it may not be as efficient as healthy kidneys in clearing certain toxins. Some toxins, such as certain medications or substances with larger molecular sizes, may not be effectively cleared by peritoneal dialysis alone.
It’s important to note that peritoneal dialysis is a valuable treatment option, and its benefits often outweigh the limitations compared to natural kidney functions. However, patients undergoing peritoneal dialysis may require additional medical interventions and close monitoring to address the functions that are not fully replicated by the therapy.
The most commented-on subject in PD-related forums for those new to the subject is how and where to store all of the supplies required for dialysis. My wife and I shared the same concern, and by lengthy research and discussion decided we needed a home to accommodate dialysis. This resulted in our purchasing a 2500 sq ft home with a layout that apriori seemed to fit. We also considered the proximity of access to DaVita (since left the Granbury area) and Fresenius and VA facilities. The video below is a spartan walkaround of our actual layout to help those in their decisions. Hank
This morning buttoning up the cycler at the completion of dialysis I let my hands get ahead of my routine and turned the power to the cycler off before removing the cassette. I had to turn the cycler back on and wait awhile until I could open the cassette door, remove the cassette, and shut it down again.
During morning coffee my wife and I discussed how dialysis is a massive collection of routines which I have blogged about, in part, previously. In this blog, I intend to address the routine aspect of dialysis and its importance in more detail.
In my dialysis world, I have annual, quarterly, monthly, weekly, and daily routines that together contribute to my successful dialysis. The following addresses these routines.
Annual: On an annual basis my Dialysis Nurse is scheduled to inspect our dialysis home and all aspects pertaining to conducting dialysis therein from cycler setup to storage to cleanliness of shower heads and shower drains etc. Anything and everything that remotely “touches” my dialysis routines.
Quarterly: While I have labs every month, on a quarterly basis I am required to use only 2.5% dialysis liquids, capture it in bags, and submit it during labs along with a 24-hour urine collection. Also, certain labs such as A1c, etc. are required on a quarterly basis.
Monthly: I have monthly labs during which I present the previous night’s biometric readings (weight etc.), and my thumb drive is exchanged. I am provided any shots required and have a general blood draw for routine dialysis-related analysis that I often report herein. I am also provided a monthly Fresenius handout expanding on some aspects of dialysis. I must conduct an inventory of my dialysis supplies and request refills as necessary from my dialysis nurse. I must conduct an inventory of my dialysis supplies such as boxes of fluids, cassettes, etc., and place an order with Fresenius for resupply. I must accept supplies in this manner according to a supplied Fresenius schedule and supervise the stowing of same in our household storage area.
Daily: This gets to be more complicated so I’m going to bullet points here:
1600 turn on the cycler, unbag the cassette and set up the cycler to a point
Break out gauze for port, and also four 2x2s and cotton swab for shower
In the bathroom break out two new paper towels and lay on the cleaned sink countertop. Prepare replacement port gauze cover and layout cotton swab, cleaning solution etc.
Turn on the shower, set it up, remove clothes and existing port cover, remove the neck lanyard holding the catheter and tape the catheter to the chest, and shower.
Upon completion of the shower and drying off, clean the port area with a cotton swab cleaning fluid and 2×2 cotton pad, apply ointment to the port, prepare 2×2 cotton cover for port and tape on, remove tapped catheter and place in lanyard, dispose of used sterile supplies, get dressed etc.
Check that cycler is where it needs to be in prep for night’s use
About 1900 complete setting up cycler for night’s use. Involves 10-12 minutes of direct involvement with the cycler.
Getting ready for bed involves among other things, washing of hands like a surgeon, breaking out my catheter and cleansing the end for two minutes having it wrapped in 2×2 cotton drenched in cleansing fluid, making the cycler ready for connection, actually hooking up to the cycler. After hooking up to the cycler ascertain if a static 50mL initial drain will take place and if so jump in bed; if not hit bypass on the cycler then to bed.
In the morning after dialysis is completed, disconnect from the cycler, take biometric readings enter the same into the cycler, and make up patient and drain lines in preparation for cassette removal. Upon a signal from the cycle that the dialysis is completed, remove the cassette, make up cassette lines, and deposit all disposables into a plastic garbage bag for placement in our trash bins.
As you should have ascertained by now, there are a multitude of routines involved in dialysis treatment. I have found that if you establish a parsimonious set of routines, as complicated as it may seem, adherence becomes “routine” and comfortable to follow. By following a very set and ridged routine in dialysis, nothing gets left out and included that is potentially harmful to the patient.
If you are going on dialysis or on dialysis for that matter, establish routines. And BTW, no alarms last night!!!!
I’m a happy camper. Last night no alarms again with the new Cycler! Pulled 1300mL on ultrafiltration. To those not familiar with dialysis, the amount of fluid that the cycler pulls out over what it puts in is called ultrafiltration and is the result of fluids you inputted prior to dialysis. 1.3 liter is a healthy amount to pull out. My weight this morning reflected the increased filtration coming in at 145 pounds of mean and lean maleness.
Another good thing happened yesterday: FedEx showed up and removed my old cycler for return. Yea on this!
Received a call from the doctor’s office that installed my catheter after a referral from my nephrologist to check out potential blockage in my catheter system. Supposed to call back later yesterday afternoon and did not so I’m hanging on this aspect. Always seems to be something hanging.
My wife and I have been planning our six-day trip back to visit her sisters in Indiana, a two-day each-way journey of about 1000 miles. We have decided to put the required bulk items for each dialysis in individual boxes to include: one 5000mL, one 3000mL, a cassette, and a stay.safe plug. In another “carry-on” will be all the other required safety and aseptic supplies required for dialysis. We will also load some drain bags in case the 20-foot drain line on the standard cassette won’t reach a drain in the motel, and an extension cord for power.
Speaking of power, I was browsing through the new cycler manual and saw the power requirements as being 480 watts at 100 volts. Using Watts=voltage times amps, we derive 480/100 = 4.8 amps max the cycler draws. Based on this and lots of other calculations, you would need five 200 Ah batteries which are large and expensive to run a cycler for up to 12 hours. Much better to consider a low-noise Honda 1000 generator instead. They can be converted to run on propane and with the appropriately-sized propane tank, should be capable of lasting an entire dialysis session.
Sunday night’s dialysis was different from any other. Around midnight, the cycler gave out an alarm notification sound and then shut itself off. Almost as to say “Sorry about that.” It was on the first drain cycle at about 1381mL accomplished. I noted this, rolled over and slept in until 0855 Monday morning. I have reported this to my Dialysis Nurse and she has sent in a referral for me to see the surgeon that installed my catheter, Dr. Tan in Forth Worth, TX.
In yesterday’s blog, I posted about my Dialysis Nurse suggesting I may be experiencing a phenomenon in peritoneal dialysis called “Omental Wrap.” This is new to me so I queried a new-to-me AI source called Poe (poe.com) with the following edification results:
Poe Prompt: What is an omental wrap as pertains to slow drainage in peritoneal dialysis patients?
The term “omental wrap” refers to a complication that can occur in peritoneal dialysis (PD) patients, leading to slow or inadequate drainage of dialysis fluid. To understand omental wrap, let’s first briefly review peritoneal dialysis.
Peritoneal dialysis is a renal replacement therapy that involves using the peritoneal membrane, a thin lining that covers the abdominal organs, as a natural filter for waste products and excess fluid in the body. During PD, a sterile dialysis solution is introduced into the peritoneal cavity through a catheter. The peritoneal membrane allows waste products and excess fluid to pass from the bloodstream into the dialysis solution. After a certain dwell time, the fluid is drained out, carrying the waste products with it.
In some cases, the omentum, which is a fold of fatty tissue attached to the stomach and covering the intestines, can wrap around the catheter or form adhesions in the peritoneal cavity. This can hinder the proper flow and drainage of dialysis fluid during the exchange process. The omental tissue can become entangled with the catheter or form scar tissue, creating a physical barrier that impedes the movement of fluid.
When omental wrap occurs, it can result in slower or incomplete drainage of dialysis fluid. This can lead to inadequate dialysis, as the waste products and excess fluid may not be effectively removed from the body. The symptoms may include abdominal pain, bloating, and reduced ultrafiltration (the removal of excess fluid).
An omental wrap is typically managed by adjusting the peritoneal dialysis technique or by performing surgical interventions. The specific approach depends on the severity of the omental wrap and the patient’s individual circumstances. In some cases, the catheter may need to be repositioned or replaced to improve fluid flow. Surgical procedures, such as omentectomy (removal of the omentum) or adhesiolysis (separation of scar tissue), may be required in more severe cases.
It’s important for PD patients experiencing slow drainage or other complications to consult with their healthcare team. They can assess the situation, perform necessary investigations, and recommend appropriate interventions to address omental wrap or other issues affecting peritoneal dialysis efficiency.
Poe Prompt: What are some common symptoms of omental wrap in peritoneal dialysis patients?
Omental wrap in peritoneal dialysis patients can present with various symptoms. Some common symptoms associated with omental wrap include:
Slow or inadequate drainage: Omental wrap can impede the proper flow and drainage of dialysis fluid during exchanges. This can result in slower or incomplete drainage, leading to longer dwell times and inadequate removal of waste products and excess fluid.
Abdominal pain or discomfort: Patients may experience abdominal pain, cramping, or discomfort. The pain can range from mild to severe and may be localized around the catheter exit site or diffuse throughout the abdomen.
Bloating and distension: Omental wrap can cause abdominal bloating and distension due to the accumulation of dialysis fluid in the peritoneal cavity. This can lead to a feeling of fullness and tightness in the abdomen.
Reduced ultrafiltration: Ultrafiltration refers to the removal of excess fluid during peritoneal dialysis. An omental wrap can interfere with fluid removal, causing reduced ultrafiltration. This can result in fluid retention, edema (swelling), and weight gain.
Catheter malfunction or poor dialysis efficiency: Omental wrap can affect the function of the catheter used for peritoneal dialysis. Patients may experience catheter-related issues such as kinking, clogging, or poor dialysis efficiency. These problems can further contribute to inadequate waste product clearance and fluid removal.
It’s important to note that these symptoms can also be associated with other complications or conditions in peritoneal dialysis patients. If you are experiencing any of these symptoms, it’s crucial to consult with your healthcare team for proper evaluation, diagnosis, and management. They will be able to assess your specific situation and recommend appropriate interventions to address the underlying cause.
Last Thursday at 1303 FedEx delivered a new/replacement cycler. The replacement is running software version 3.0.03 062; my old cycler was running 2.9.2 062 so we’re on a much newer software version.
So how’s it going so far? The first night, Thursday, no alarms. The second night Friday, slow drain alarms on the first and second drains happening at approximately 1281 and 800+ mL of the accomplished drain. In preparation for Saturday night, I rerouted my patient line so it goes straight across my stomach and to the cycler without any loops being taped to my stomach. No alarms.
I have informed my Dialysis Nurse of the status and inquired about switching to “Treatment Based” as the new manual suggests on page 60. This is still an open item. In order of action, we are going to keep watching alarms given only one night of no alarms with patient line rerouting. We are going to make sure I’m clear of any stool blockage. I may be referred to the doctor who installed my catheter to see if there are any other internal issues blocking the tip of the catheter called “Omental Wrap.” All of this may culminate in a laparoscopic procedure (keyhole surgery) where the surgeon enters my stomach and looks around to ascertain if all is in order.
In the middle of all of this, I was informed initially by Fresenius that the old cycler would be picked up by FedEx on Tuesday, 8/21/2023. Upon receipt of the new cycler, it DID NOT have return labels in the plastic envelope that it was supposed to. This necessitated a call to Fresenius where NOW the FedEx driver is supposed to pick up the old cycler Monday, 8/20/2023, and have a return label with him/her. Seems that Fresenius has a really hard time getting all their ducks in a line!
