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một lần nữa: Or in English, One More Time we visit the Beast, the Cycler

One of the first phrases I learned in Vietnamese language school before going In-Country was một lần nữa, meaning one more time. It just kinda rolls off the tongue when speaking Vietnamese. In the military, you learn to do lots of things, One More Time. So it is with alarms on my company-issue Liberty Cycler.

Last Wednesday night on the first main drain cycle the cycler hung up and essentially at every “pump” drained only 1 or 2 mL of fluid instead of the normal 12 to 13 mL. I called “tech support” and after over half an hour on the phone, it was agreed that my case would be “escalated.” What this means, in reality, is that a faceless, clueless, and heartless representative of Fresenius would contact my clinic dialysis nurse and deny me cycler replacement. This is exactly what happened. The excuse was that I had not been faithfully calling tech support every time I received alarms and thus they could not justify replacement. Nothing was said nor has it ever been regarding just how many times something like alarms have to be reported before action is taken.

Along the way, Fresenius always comes back to everything which does not include their cycler as being at fault. This incident included questions as to whether my catheter was properly placed and operational/not blocked. Responding to the blocked aspect, the cycler always fills well, and recently I had a manual drain test conducted by my Fresenius team with no abnormalities detected.

So, in consort with my dialysis nurse, we scheduled a xray exam to look inside to see if anything is untoward in my stomach with my catheter system. The full report is below: I’m good so my strategy is to report every burp of the cycler’s drain problems until someone smells the coffee or I die from sleep deprivation.

Exam AR Acute Abdomen Series 08/10/2023

History: Poorly draining PD Catheter

Technique: 5 views of the lumbosacral spine

Comparison: None

 Findings: There is moderate curvature of the lumbar spine with convex to the right. Moderate degenerative changes lower thoracic and lumbar spine.

No fractures of dislocation. Large amount of formed stool is seen within the right colon. Curvilinear tube overlying left lower quadrant of the abdomen. There is a larger bore catheter identified with the distal tip overlying the mid aspect of the lumbar spine at the L4 level on the AP view and overlying the area of the LS level on the lateral view.. CT may be more helpful.

Moderate degenerative changes lumbar spine. Mild to moderate degenerative changes of the hip joints bilaterally.

Moderate vascular calcifications of the abdominal aorta and iliac vessels.

Impression:

  1. There is mild to moderate curvature of the lumbar spine with mixed the right.
  2. 2. There is a curvilinear catheter seen overlying the left lower quadrant of the abdomen. There is a larger bore catheter is seen overlying the lower mid abdomen. CT may be more helpful for placement if no drainage..
  3. 3. There is a moderate to large amount of degenerative changes lumbar spine.
  4. 4. Significant amount of stool is seen within the right colon.

Fresenius: You are invited to walk a mile in my shoes!

General Stanley McChrystal is credited with stating “Don’t follow my orders, follow the orders I would have given you if I were there and know what you know.” I only wish that Fresenius followed such a dictum with its “tech support.” My continuing frustration with Fresenius’ tech support is their total lack of empathy, understanding, and certainly action on my behalf as a result of continuous drain alarms from their Liberty Cycler, taking place over half the time.

Their position seems to be if you can get through a night of treatment, REGARDLESS OF THE CONSEQUENCES OF DOING SO, that’s good enough and they wipe their hands of any further responsibility, caring, or interest. Dealing with Fresenius “tech support” is worse than sticking your finger into a cloud; at least with a cloud, you may end up with a moist finger.

For those of you not familiar with a Peritoneal Dialysis treatment here’s a short primer. For me, the Fresenius Liberty Cycler, a computer-controlled pump and drain system, upon attachment to my stomach catheter at night, checks to see if I have any fluid that needs to be drained, then pumps in two liters of special fluid (fill), that it times to stay in my stomach liner for two hours (dwell), then pumps this fluid and any extra it has pulled out (drain). It accomplishes this over four cycles which takes upwards of eleven hours to accomplish.

So in the normal operation of the Cycler, I have four drain cycles. This is where my cycler has difficulty. More often than not, during the drain cycle, the cycler does not, can not, will not or something else not operate as designed, and it throws a Klaxon-like alarm where I have to wake up, get out of bed to push buttons on the cycler to reset the alarm and drain cycle. From experience, I know that I cannot just jump back in bed but must remain in an upright position for it to complete the drain cycle before I can get back in bed and attempt to go back to sleep. This can take anywhere from 20 minutes or less to accomplish. Only then can I get back in bed and attempt to return to sleep.

Keep in mind that I am not the only Liberty Cycler user experiencing such alarms!

Erin Davis writing in the 8/7/2023 issue of diaTribeLearn wrote an article titled “Sleep Hygiene; A Checklist for People with Diabetes.” Erin states “

“You may have noticed that when you have a bad night’s sleep, your blood sugars are high. It’s not just a fluke. Sleep, or lack thereof, impacts blood glucose levels, and in turn, glucose can affect sleep quality. 

While you’re sleeping, your body is performing serious maintenance. Say if your sleep is interrupted – due to something like waking for a baby or dealing with continuous glucose monitor (CGM) alarms – you may find it difficult to manage your blood sugar. “

I’m laying the foundation that Fresenius’s adamant refusal to alleviate my cycler alarm situation has consequences beyond lack of sleep; Fresenius may well be the cause of my demise at an earlier date than God has planned. God help us all (Especially those of us using Fresenius’s Liberty Cycler!)

Some Nuts and Bolts About Peritoneal Dialysis

Writing in the August 5-6, 2023 edition of The Wall Street Journal Review p. C14, Ed Catmull, a co-founder of Pixar (along with Steve Jobs and Alvy Ray Smith in 1986), mused “Failure is a natural byproduct of innovation, and change is the only constant in every industry.” We are certainly seeing this in all things that touch us as peritoneal dialysis patients.

Take failure. From my perspective, the Fresenius Liberty Cycler is plagued by many “failures,” idiosyncrasies, and inconsistencies, and at times seems to have a personality of its own. I’d like to relate what took place last Sunday night.

As per usual I was on the fill cycle of the cycler by 2135, having installed the Cassette with my new and revised methodology. I awoke in the morning at 0900 with the dialysis treatment completed. On the surface this would appear to be a thumbs up but not so. Yes, I experienced no alarms, but… I usually put about 7900+ mL of fluid in, and have about a microfiltration rate of 6-900 mL. This means I am pulling a little less than one liter of fluid out of my body during dialysis in excess of what was put in. This is good in that this is the way we get rid of excess fluid by dialysis. During this dialysis cycle, 218 mL of fluid in excess of what was pumped in as part of dialysis remained. The bottom line my weight was up 2.2 lbs this morning. When I light off the Cycler tonight I expect it to immediately drain off excess fluid before starting its normal fill-dwell-drain X 4 cycles.

Change IS all around us regarding dialysis and those maladies that contribute to it. Take Continuous Glucose Monitors (CGMs) for instance. While they have been around for some time, and have been improved over time, our governmental bureaucracies are still fumbling around with funding their obvious value to diabetic and dialysis patients. People and organizations resist change, even if it is good.

Newton’s first law of motion states “In the absence of any net force, an object in motion continues in motion in a straight line at a constant speed.” I intend to be and hope to be part of that force to aid and abet meaningful change in the dialysis world and worlds that intersect it on a Venn Diagram.

Why High Hemoglobin Dialysis Labs?

For the last five monthly labs, my Hemoglobin readings have exceeded the upper limit of 11 with readings of 11.6, 12.2, 11.4, 12.9, and the last reading of 11.4. My brother-in-law Jerry is currently in the hospital with a reading of 6.0 and is receiving blood transfusions to help alleviate his shortfall. This value indicates the amount of red blood cells in my body. These cells contain iron and carry oxygen from my lungs to the rest of my body. My O2 readings which I take every morning or always 98 or 99.

For most of my life, I have engaged in one form or other of exercise. While in the US Navy, I was required to maintain a high level of physical fitness as “part of my job.” To do this, I ran in 5k, 10k, and 15k races just about every weekend for the better part of four years.

After retirement, I ran in a couple of marathons organized around the Indianapolis 500 race, joined a fitness club to stay in shape to race my Porsche (I did quite well BTW), and even after triple bypass surgery hired a personal trainer for years to continue to work with me on my personal fitness. I’m still, even with dialysis, not a couch potato and can hold my own.

According to several web references, The typical female athlete tested in 2019 had a hemoglobin of 13.6, while the male athlete has an average hemoglobin level of 14.7. Both are well above the levels of anemia and fall into, what is termed, the “optimal” athlete range.

I posit that my higher levels ARE NOT a problem, nor have they been flagged as such by my Dialysis Team, but are a holdover from my more athletic endeavors. Comments?

Abbott Libre 3 Sensor Warning!

This falls into the category of “It happened to me and it could happen to you!” So what is this “happening?”

The last time I applied a new Libre 3 sender to the underside of my upper arm, it bleed like a stuck pig, however stuck pigs bleed. It WAS somewhat profusely and went through my sweatshirt and elicited from my wife “What is that?” in an alarming fashion. I knew I was in trouble – again, but NOT WHAT FOR. Keep in mind I have been using the Libre 3 without any such occurrence for months and months.

We cleaned up my underarm area with alcohol swabs but left the expensive new sensor in place. I did not bleed anymore and it has been in place and operating normally ever since.

If it happened to me, it can happen to you also…… Be forewarned.

TIR – What is it and why it matters

Glucose control isn’t just a buzzword for those on Peritoneal Dialysis (PD); it’s a vital aspect of managing overall health and wellness. For individuals depending on PD, maintaining the right balance of glucose is about more than just avoiding highs and lows—it plays a critical role in preventing complications and ensuring the effectiveness of the dialysis treatment itself. Thus, anything that aids and abets control is a matter of interest to those of us on PD, especially those who are also diabetic. That includes me.

TIR, or Time in Range, recently has come to the forefront in diabetic care and control. Hayden E. Klein writing in the August 3, 2023 edition of AJMC in an article titled “Why Time in Range Matters for Diabetes Care Beyond A1c” found essentially universal support for the use of CGMs (Continuous Glucose Monitors) to monitor TIR.

The American Diabetes Association (Link here) suggests “The time in range method works with your CGM’s data by looking at the amount of time your blood glucose has been in target range and the times you’ve been high (hyperglycemia) or low (hypoglycemia). Time in range is often depicted as a bar graph showing the percentage of time over a specific amount of time when your blood glucose was low, in range, and high. This data is helpful in finding out which types of foods and what activity level causes your blood glucose to rise and fall. 

Most people with type 1 and type 2 diabetes should aim for a time in range of at least 70 percent of readings—meaning 70 percent of readings, you should aim for roughly 17 out of 24 hours each day to be in range (not high or low),”

So what does this look like in real life? Using my Samsung S23 Ultra phone and the Libre 3 app I captured the screen of the CGMS’s home screen showing the preset upper and lower glucose readings (the shaded area around the actual glucose reading line), and after hitting the three bars in the upper left corner and under “Reports” selecting “Time in Ranges” obtained the second graphics.

The first graph with a glucose reading of 131 is about 1 1/2 hr after lunch and is accepted as good. All of my glucose readings for the last 24 hours have been within the set limits. The second graph shows for the last seven days 95% of the time I have been within limits. There is no reason this couldn’t be 100% so I have work to do.

The last graph is included just to give the world an idea of what the weather is like here in the Dallas-Fort Worth area where we live. Pecan Plantation is actually some 40 or so miles SW of DFW.

Cycler Alarms + Lab Results

Sorry to have to report that the modified methodology I am using to close the cover on the Cassette for my Fresenius Liberty Cycler IS NOT precluding alarms. Last Thursday night I have alarms on both the first and second drain cycles so it’s back to the drawing board for me.

I have constructed a table shown below of my August 2 lab results. Below the table are comments about its contents.

WhatAug 2, 2023RangeFor what
Albumin3.4=>4.0Protein in blood
nPCR0.97=>1.2Enough protein
Potassium4.63.5-5.5Heart & muscles
wKt/V1.86=> 2.0Enough dialysis
Calcium8.88.5-10Bones & muscles
Phosphorus5.33.0-5.5Bones & heart
Hemoglobin11.410-11Red blood cells
Glucose12170-160Energy for cells
Creatinine7.5LowImpacts eGFR
Lab Readings 2 August 2023

From the table above, the big three that my nephrologist keeps on top of, K, Ca, and P (Potassium, Calcium, and Phosphorus) are all within specs, a good thing. I’ll take these readings as a win.

Albumin is always low, along with nPCR. I am working on eating more red meat but that also has the downside of increasing P so I have an additional P-Binder to take with my steak.

The wKt/V reading indicates my dialysis treatment is not quite up to where it should be but higher than what would trigger action.

My glucose reading of 121 is very acceptable in that I had breakfast some one hour before the blood draw for the labs. I’ll take this reading all day every day.

Lastly, for some reason, my Creatinine reading fell almost one full point from last month. Plugging 7.5 into my eGFR app yields an eGFR of 7 for the record. All else being equal, the creatinine test is a measure of how well kidneys are performing their job of filtering waste from the blood. So from this perspective, the drop is a good thing indicating my kidneys are still trying to function. I am also still making urine but not nearly as much as when I drank lots of beer.

Update Cycler Fix + Life Goes On

Alas, last night I had a Liberty Cycler alarm at the start of Drain Cycle Three. I got out of bed, reset the alarm, and immediately went back to bed and to sleep. The next time I awoke it was to the Cycler draining on the last drain of the evening, drain four. So while I did experience an alarm, I was able to reset it and jump back in bed. Heretofore I had to stay erect to assuage the inner sole of the Cycler. I take this as still a win for the revised way I am inserting the Cassette into the Cycler and will continue to do so and report back.

This past Wednesday I had two interfaces with Fresenius. The first was a lab visit for my monthly labs (I’ll relate to this in Monday’s blog), handout, and nurse Cindy checking my heart, feet, and ankles, running through a checklist of medical and other questions, and picking up fungible peritoneal dialysis supplies. All of this always precedes my monthly dialysis team meeting which is scheduled for 0830 Friday, 8/11/2023.

You can imagine that at 84 my relatives are also getting up there. With recognition that life is finite at best, this morning my wife Linda and I planned a flying trip to visit relatives in Indiana for the last part of September 2023. This month, August 2022 is when I started on Hemo, and September 2022 is when I started on PD. It is time to break out and get on with life and go on a mini-vacation. We are going to load up our BMW X5 with all the PD supplies we need for eight days and go for it, planning on being gone for six days. Fresenius has facilities in Little Rock, AR where we plan on spending the first and last nights en route, and also in Lafayette, IN our final destination.

In a subsequent blog, I’ll relate what I have learned about traveling while on PD.

More on Fresenius Cycle Drain Alarm “Fix”

Yesterday I blogged about the small setup change that I have made that seems to have “fixed” the renowned Liberty Cycle drain alarm problem I have experienced since deploying the device last September. In review, the setup change involves holding down the toggle clamp at the bottom of the compartment where the Cassette is inserted during setup to make certain the Cassette is well-seated in the Cycler’s compartment before closing the lid. Last night makes it four-for-four with no alarms after instigating this small change.

There appears to be a design flaw in the toggle/latch mechanism. The surface of the latch that is supposed to “capture” the cassette in its grasp actually is slanted upward and out toward the lid; it should be as a minimum straight up and down, in other words, at a ninety-degree angle to the bottom leg. I’ve included a picture of this area of the cycler above with a sketch in blue above the toggle/latch depicting what a side view of it looks like. This is not conducive to firmly latching the cassette in its grip (when the door is closed) and only compounds the lack of drain operation.

Why if the cassette is not firmly snapped into place in the cycler might drain problems arise? I surmise that the two partial globes that protrude on the cassette are part of a pneumatic system that “Pumps” fluid within the system. If the cassette is not firmly latched into position, it can flex outward toward the door during pumping reducing its efficacy/efficiency which leads to less “pressure” to drain fluid resulting, as often as not, in alarms. QED

I’ll keep you posted on my results. For comparison, the longest I’ve ever experienced between nights with no alarms is eight nights. The shortest time on dialysis excluding any overhead is ten hours and nine minutes.

Fresenius Liberty Cycler Drain Cycle Problems Resolved?

I have more or less accepted that the Fresenius Liberty Cycler, while a life-saving piece of hardware, indeed does have extensive design faults. I have previously documented in this blog on numerous occasions that on more than half of the nights, I receive drain alarms. These alarms are beyond bothersome in that they require me to wake up, get out of bed, silence the alarm at the cycler, and stay upright until the drain cycle is complete, some 10-15 minutes usually, before I can return to bed and hopefully sleep. Try getting awakened every couple of hours by a Klaxon-type noise two or three times a night and see how you feel the next day. It is akin to being awakened by the General Quarters alarm aboard US Navy ships, where I have endured many.

I MAY have found a solution. I am, at this point, three nights into testing it and have gone three-for-three with no alarms. The solution is simple and obvious. I have provided four pictures below to illustrate what I am doing differently in setting up the Cycler initially which seems to have made a difference.

It involves snapping the cassette into the Cycler a little bit differently. In the past, I placed the plastic top of the cassette into the screw-heads in the Cycler and pressed the cassette at the area of the toggle to “snap” it in. I did not always hear a “snap” noise but the door closed and the Cycler went on with its setup with no further ado.

For the last three nights, I am still putting the top of the cassette under the two protruding screws in the Cycler, but then holding down the toggle clamp at the bottom with my finger (it is spring-loaded) before sliding the cassette into position, then releasing the toggle. This ensures the cassette is flat against the Cycler and the bottom is resting well within the toggle which is fully snapped in position.

The next four pictures are for clarification and are of my Cycler.

  1. The cassette that snaps in Cycler and provides all the interfaces
  2. Area cassette engages toggle my finger is pointing towards
  3. View of Cycler receiver for cassette with the toggle at the bottom center
  4. Closeup of toggle at the bottom
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