Tag: PD (Page 38 of 51)

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.

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.

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.

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.

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

If you let it, being a dialysis patient becomes all-consuming; you are relegated to eating, sleeping, and living “dialysis.” I posit that this is not a good thing for either your physical or mental health and you need to “get away” from your dialysis persona, even if only for short breaks. While your life away may not be as robust as it previously was, you can still enjoy life as it is.

One of the things I enjoy is helping our son build out the new home he is building outside of Palo Pinto, Texas. It is a unique build in that he is utilizing a building technique called ICF, for Insulated Concrete Forms. Along with this, he and his family have a vision of a Doctor Dolittle-esk animal collection. First up in this collection, is a chicken coup which is under construction. I have helped him with the electrical wiring to and in the coup. See the video below where their daughter relates about the coup. See, you CAN do things other than dwell on dialysis. I do.

At my age (84 and counting) a point is reached where we have to face the probability of meeting the Grim Reaper in due course. This blog is about gathering existing information on statistically when my meet and greet may take place, hopefully way in the future.

Our USA Federal System’s Social Security Admin maintains a website (https://www.ssa.gov/oact/population/longevity.html) wherein you can ascertain your projected statistical age at death assuming that all is well at the present. This is a starting point for me and neglects any of the difficulties extant in my aging body. The chart below captured from this site suggests, all else being equal, I have 6.4 years of additional life expectancy for a total of 91.0 years.

I assume then, 91.0 years to be a workable upper asymptote as the SSA site associated no probabilities with this projection, but should have. We now turn to attempt to uncover recent data on life expectancy for my age group that is also receiving dialysis. I did not and could not find any specifics only generalities such as “it depends…”

From here (https://pharm.ucsf.edu/kidney/need/statistics) I gleaned “Mortality rates vary depending on the kidney failure treatment. After one year of treatment, those on dialysis have a 15-20% mortality rate, with a 5-year survival rate of under 50%. Persons who receive transplants have a survival rate of about 80% after 5 years.”

But age was not factored in. If we accept the 5-year survival rate as 50% disregarding any other factors, this reduces my life expectancy down to 3 or so more years.

I guess the bottom line is that we’re looking at 3-6 years but will take whatever God deals us. We Will Not Ring The Bell!