Tag: PD (Page 37 of 50)

As I write Friday’s blog it is approaching noon on Thursday and no replacement cycler has arrived nor have we been contacted by anyone from Fresenius. However, I did manage to achieve other housekeeping chores.

We have been trying to move a brokerage account to our main Schwab account with difficulty. Lots of t’s to cross etc. This morning I journeyed to UPS to send a copy of the monthly statement from the account we desire to close to a Schwab rep to process.

The second gate was the delivery of our golf cart. We bought a refurbed 2019 Club Car to putt around Pecan Plantation. Upon testing on our dead-end street, it crapped out and was trailed back to the dealer. Troubleshooting found that a main electrical connection between the battery and generator had battery acid on it and the interior wire had corroded and opened. This prevented charging the battery and supplying power while the engine attempted to run. The wire was replaced as was the battery. We did another test run with good results.

Yesterday was the supply order date for me to order supplies from Fresenius which I did. We will be in Indiana on vacation on the scheduled delivery date at the end of September so I called support and worked with them for an alternative date. We came up with delivery the first week in October so that’s taken care of.

I also made a call to Fresenius customer service to inquire about cassettes with shorter hookup lines. I had previously read that you could order one with a 10-foot instead of a 20-foot catheter line. My thinking is maybe this will help alleviate the drain alarms I have been plagued with for almost a year. I was informed that the cassette with the 10-foot catheter line only comes with a 10-foot drain line which won’t work for me; I need a 20-foot drain line to reach our master bath shower drain. I was also informed that to receive such a cassette my “prescription” had to be altered by my Dialysis Nurse. I could not just order one on my own. The shorter cassettes do not show up in the Fresenius Patient Portal FYI.

In closing, nada concerning the new cycler delivery supposedly scheduled for today.

Called Fresenius “Tech Support” again Monday AM. Seems like my Cycler is going downhill. In the last seven days, I have experienced 13 alarms on the drain cycle. It seems to be developing a pattern of sorts where it drains 12-1400 mL of “distillate”, then hangs. The time on dialysis reflects this in that instead of 10 hours 30 +/- minutes, it jumps up to over eleven hours.

For the record, the support person, after asking expected questions like the cycler’s serial number and software version, was interested in where the system drains (straight into a shower drain), how long a run this is, had the drain line been modified, the data off the cassette (lot #, etc.), and “how long has this been going on? When I responded at least six months it got her attention and even more when I explained my dialysis team and I had exhausted all other possibilities other than the cycler itself and were in unanimous agreement I needed a new cycler.

I’m supposed to receive a phone call that a new unit is en route (haven’t) and receive it within 24 hours. Not holding my breath but praying!

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