In browsing some technical articles recently, I came across a new incentive by Google named Google NotebookLM. NotebookLM takes an article, blog post, or web page and produces a summary, notes, questions, and yes, an audio file of a conversation between two people as if in NPR. I tried this out with a previous blog entry of mine wherein I discussed the unsound Sustainability practices of Fresenius in their decision to shorten the drain and patient leads. The first paragraph below is the produced summary followed by a link to the audio file produced. Please listen to it, it is fantastic!
Summary
The podcast discusses the environmental impact of Fresenius’s recent change to the length of the drain and patient lines on their peritoneal dialysis cassettes. While Fresenius advertises its commitment to sustainability, the author argues that shortening these lines actually leads to increased waste, as users are forced to purchase additional extensions to reach their toilets. Additionally, the author criticizes the design choice for its negative impact on the functionality of the dialysis machine, making it more difficult to drain fluids due to the added length. This ultimately results in excess tubing ending up in landfills, contradicting Fresenius’s claim of sustainability practices.
In summary, I filed formal complaints concerning Fresenius unilaterally making the drain and patient lines shorter for the Liberty Cycler Cassettes. I did so over a week ago. I have received a customized web form back from Fresenius which I have updated as tales of woe continue to mount. I have received a bounce from CMS but nothing from Medicare. So where we stand is at the present it does not appear that there is any movement.
Below is an example from Facebook of the more recent tales of woe coming out about the action on the part of Fresenius which I have provided to my local dialysis team and posted as an addition to my complaint with them:
As a Peritoneal Dialysis patient, I am required to conduct what is called a static fill in the late afternoon, and an overnight machine-drive procedure all night. In preparation for the static fill, I have to manually heat the 2-liter distillate bag with a heating pad provided by Fresenius. While this works, it is somewhat clumsy. It has three heat settings, L, M, and H that never seem to be the same and don’t come close to the nominal body temperature of 98.6F or 37C. It also seems the longer the distillate bag is wrapped in the pad, the warmer it gets. Lastly, there is no timer involved; all the controls are static.
An ideal heater, once loaded and activated, would turn on at a set time, bring the contents up to 37C, and hold at that temperature until the bag is removed for use. A device meeting most of these requirements is available on Amazon but imported directly from China so it takes some time to receive it. See this link: https://www.amazon.com/dp/B0C288RYF5?ref=ppx_yo2ov_dt_b_fed_asin_title
The lead graphic is a picture of the actual device. I bought one and have been using it for several days without any problems. Be advised that the instruction brochure is in Chinese. I went back to the seller and asked if there was an English version and promptly received a PDF in English. I have included this brochure in PDF at blog’s end.
When you turn the heater on, it boots up with the current heater temperature, and within an hour has the contents heated up to 37C, the default setting. I still have to figure out how to set the timer functions up so I can’t yet comment much on them. The 2-liter bag fits exactly into the “luggage” and the dual zippers come around to the tubing to the drain bag. It appears to be much smaller, neater, and more efficient than the pad I was using.
Fresenius on its website https://www.fresenius.com/ boasts of their devotion to Sustainability. Turns out that I taught Sustainability to MBA students at Purdue University’s Krannert School of Business so I know a little bit about this subject.
Cutting to the chase, in review, Fresenius recently reduced the drain line and patient line on the disposable cassette used daily in our peritoneal dialysis treatment to 15 feet from 20 feet. Seems that many of us can no longer reach the toilet with this new, shorter version. Fresenius may have shortened these leads as a business decision to save money or even generate less waste.
But wait here. Let’s look at this more closely. Consider only the drain side. With the drain line reduced to 15 feet, I now have to order the additional 20-foot drain extension to reach our closest toilet to drain. So now instead of a 20-foot drain line, I have a 15-foot (new drain length) plus 20-foot (extension) for a total of 35 feet for the new setup. So I am putting in the trash (35-20)/20 -> 75% more waste from the drain line alone. This is somewhat compensated by the shorted patient line, being five feet shorter, so considering this too, 25% more waste is being generated. (20+20 original, 15+15+20 now -> 50 – 40 over 40 = 25 %)
So tell me, how is this being environmentally sound and a good sustainability practice?
All of us using the Fresenius-provided Liberty Cycler know it is prone to drain alarms. I remember enough of my junior-level fluid dynamics class at Purdue when I was an engineering student to know that adding drain line length requires more ump from the Cycler to push fluid out which it is already lacking. Adding essentially 15 feet of drain line can only exacerbate Cycler performance. To alleviate this situation as much as possible, I have been cutting about five feet off the drain extension and using this as the extension, giving me 20 feet again, to reach our drain toilet. The lead photo is the excess waste tubing now going to the landfill as a result of the decision by Fresenius to decrease line length. Aren’t they just brilliant?
I have a gut feeling that we’re getting things rolling to return cassettes for the cycler with a 20-foot drain and patient lines. We probably haven’t reached the decision maker(s) who move mountains in Fresenius yet, but we’re pushing the snowball uphill.
On 9/17/2024 I made a post on the Fresenius-sponsored site PatientHub about the situation and Thursday received the following response -> see below:
Hank Feeser asked a question.Tuesday, September 17, 2024 11:43 AMHow to complain to Fresenius about shorter cassette linesThe purpose of this post is to encourage everyone with any problems with the new shorter cassettes, whether it be no longer able to reach your toilets or otherwise to make the effort to call the Fresenius Action Hotline at 800-362-6990 and make your concerns known. I just did so. Took about 10 minutes and I am now on record that I was not consulted nor asked about the new cassette as being appropriate for my use, that I can no longer reach the toilet, that the unilateral action on the part of Fresenius was stupid and unethical. Stand up and be heard please. Hank
Kaelyn (Community Manager)Hi @Hank Feeser, thank you for your feedback. We have passed your concerns along to the appropriate team. Please continue to reach out to your care team or our customer support team at (844)898-0333 for support. More information on this topic
It appears that there is a high degree of interest in this subject, as there should be. It impacts many of us in a way that Fresenius is extremely remiss in causing. Since my last post on this subject, I have filed two more formal complaints which I will outline how to do below. I also learned from an anonymous source from my local clinic that they are in the process of authoring a Product Complaint Form for those who desire to file the same at their next scheduled clinic visit. This is indeed progress on a local front. You might check if your local clinic is taking the same incentive or urge it to do so. On to my recent filings:
I filed an online complaint with Medicare.gov. The URL is: https://www.medicare.gov/my/medicare-complaint This is a pretty simple form that starts with your Medicare number and goes from there. It has its idiosyncracies, however. When I entered all the correct info from my card it said it couldn’t find me so I had to select file / go on without this info which worked OK. A second entry that screwed up the works is you are limited to 1500 CHARACTERS to file your complaint. Seems I had much more. I wrote what I wanted to write, then used Poe’s AI to condense this to 1500 characters or less. The result was then pasted back into the Medicare complaint form. Lastly, the form REQUIRED entry of something named “plan Control ID.” Having no idea what this is for this situation and after doing some poking around via Google I just entered “Unknown” which it accepted. The foregoing applies to those of us who are on Medicare. For those who are not:
CMS is another way to file a complaint. I also filed there using the following URL: https://www.cms.gov/medical-bill-rights/help/submit-a-complaint/get-started For those who would rather talk their way through this, the Help Desk phone number is 800-886-3059. Under CMS, you can file a complaint if you are using other than Medicare insurance.
Keep in mind that in all cases except a direct complaint to Fresenius, I outlined a procedure for in yesterday’s blog, we are forcing a square peg into a round hole here. We are discussing a medical device that has been changed to our detriment so keep that in mind. While we may seem to be powerless in this situation, I do not share this and will continue to endeavor to fight tooth and nail for what is only right for us and our care. We are not the enemy here. Hang in there with me and file complaints.
This is the text of what I filed to Medicare:
Fresenius Medical supports my peritoneal dialysis needs, providing equipment and care. The Liberty Cycler machine uses a cassette that connects to my catheter and drains spent fluid. Before August 2024, the drain and patient lines were 20 feet long, allowing me to use the toilet and manage dialysis tasks comfortably. However, Fresenius unilaterally reduced these lines to 15 feet without consulting patients. Although they now offer a 20-foot drain line extension for purchase, the patient line remains at 15 feet, making it impossible for me and others to reach the toilet.
Despite repeated requests for the return of the original cassettes with 20-foot leads, Fresenius has not responded. I have filed complaints with my local Fresenius clinic, completed their online complaint form, and reported the issue to CMS. Fresenius is billing Medicare over $100,000 monthly for my care, which I find unsatisfactory and unethical.
As I have recently blogged about, the decision to shorten the drain and supply lines on the Liberty Cycler cassettes to 15 feet from their previous 20 feet has caused several/many patients severe problems, myself included. With their present length, I can no longer reach the toilet without further machinations.
Over several days my wife and I have discussed the situation, read more and more complaints on the Fresenius Patient Hub, reached the gut feeling that nothing locally at my clinic was being done about it, and decided I would.
This morning as a result of surfing the web I uncovered a Fresenius Action Hotline wherein patients may file complaints about problems with Fresenius care. The phone number is 800-362-6990. I called and filed an “official complaint” about the cassette change. I related that I can no longer reach the toilet, that Fresenius did not contact patients in advance of the change nor provide us with a viable alternative to the new 15-foot supply line, etc.
Remember, the squeaky wheel gets oiled. More on filing “official” complaints to follow.
Studies have found that a significant portion of PD patients are elderly, with many falling into the 65-75-year age range or older. In a WSJ article 9/14-15/2024, Ben Cohen wrote an article titled “Apple’s Most Useful New Product Launch.” The lead graphic is from this source and the following uses the same as reference.
From the lead sentence and the graphic, it is easy to ascertain that statistically almost 50 to 75% of those of us on PD are also suffering from hearing loss. Thus any new technical breakthrough in this area should be of interest to PD patients and by association readers of this blog.
Cutting to the chase, the FDA recently approved Apple’s AirPods Pro 2 as an OTC hearing aid. A software update rolling out this fall is touted to make AirPod Pro 2 into a medical device essentially making it into a hearing aid. While they can cost upwards of $249 from Apple sources, I priced one at $38.xx on eBay here.
This is what Perplexity had to say about this:
Based on the search results, here are the key points about using Apple AirPods Pro 2 as hearing aids:
FDA Authorization: The FDA has authorized a software called Hearing Aid Feature (HAF) that will allow AirPods Pro 2 to function as hearing aids when paired with an iOS 18-compatible iPhone or iPad[2].
Hearing Test Feature: Apple is introducing a scientifically validated Hearing Test feature with AirPods Pro. Users can take a 5-minute test at home, which uses pure-tone audiometry and provides an easy-to-understand summary of results[4].
Over-the-Counter Hearing Aid: AirPods Pro 2 will have an over-the-counter Hearing Aid capability for users with mild to moderate hearing loss. It uses the personalized hearing profile from the Hearing Test to make real-time adjustments[4].
Cost-Effective: AirPods Pro 2 retails for $249, which is significantly less expensive than traditional hearing aids that can cost thousands of dollars[2][5].
Reduced Stigma: As AirPods are widely used, experts believe this could help reduce the stigma associated with wearing hearing aids[5].
Availability: The Hearing Test and Hearing Aid features are expected to be available in the fall of 2024, pending marketing authorization from global health authorities[4].
Personalization: The hearing profile can be used to personalize the AirPods Pro listening experience, even for those with little to no hearing loss[4].
Media Assist: A new feature that helps boost certain parts of speech on phone calls or instruments within soundtracks[4].
Clinical Validation: The Hearing Aid feature was clinically validated in a controlled, randomized study[7].
Current Workaround: Some users are already using AirPods Pro 2 as makeshift hearing aids by adjusting settings, even before the official feature release[1][8].
It’s important to note that while this technology shows promise, it’s not yet officially available and may not be suitable for all types or degrees of hearing loss. Users should consult with healthcare providers for personalized advice on managing hearing loss.
Many patients including myself have been bamboozled by the new, 15-foot supply and drain lines on the newly provided “improved” Liberty Cycler cassettes. The purpose of this blog is to offer a few solutions from the simple to more technical to deal with the shorter line that connects to our catheter. I’ve previously discussed the availability of a supplemental line for the shorter drain..
Most simple: Go old fashion and buy a bed pan. The are available on Amazon for as little as $10.00. See link here:
Put Cycler on an extension cord long enough to move cart so can reach target. Suggest buying a 12 gauge cord. They are available on Amazon for less than $20.00. Using this method would require the presense of mind to move the cart without unplugging the cycler, and dealing with making up the cord upon return to its normal place.
This is the one I have. Place your UPS (Unirruptable Power Supply) on the bottom shelf of the cycler cart. If you have to move the cart to reach the toilet, just unplug the UPS, roll the cart so you can reach the toilet, do your thing, roll the cart back where it normally is, and plug the UPS back in and it will pick up where it was without any interuption to cycler operation. If you are new to the UPS world, I suggest buying a UPS with at least a 200+Watt-hour rating which should run the cycler for a least an hour or more. Something like this from Amazon would do. See picture at lead.
Last and NOT RECOMMENDED is to splice in enough plastic tubing to enable you to reach the toilet. If you could reach your toilet with the former 20 foot line, this jumper should be about five feet and whould require two male connectors of the right size for the tubing that are clinically and asceptically clean. I cut the drain extension off for about a five foot extension to reach our toilet for drain so have plenty of tubing left over, but not the tubing fittings. Amazon has a bunch but you would need to figure out the correct size and a way to keep everything Khoser-Clean.
Little late today with my daily blog. Sorry. Two subjects that should be of interest to PD patients, are Velphoro, our go-to phosphorus binder, and COVID.
Recently I posted the news that after the first of the year, Velphoro would be covered by CMS/Medicare and thus provided to those of us using it and qualifying for no charge. To get ahead of the perceived rush, my dialysis team suggested with get in the FreseniusRx queue ASAP so yesterday, a script was sent in for me. I received a phone call this morning from FreseniusRx stating that the Rx was ready to ship, and it would be $118.00. This is because the system had not nor should it be shifted over to CMS pay. I declined the shipment since I have plenty on hand to due me until after the first of the year. So take this as a heads-up.
Several days ago a gentleman here in Pecan Plantation advertised a 10″ radial arm saw for free. I jumped on the deal for our son who is building an ICF home nearby. The guy nicely provided the trailer to get it to our house and of course, I helped him load and unload it. Yesterday morning I received a text from him stating that he had tested positive and had a mild case of COVID. Since I was in rather proximity to him it was of concern.
Turns out that on the way home from my monthly dialysis team visit yesterday I stopped by CVS and received both the fall flu shot and the new COVID shot. You can ascertain this complicates things because is any reaction I have due to these injections or am I coming down with COVID. For the record, I have had every and all COVID shots offered.
I notified both my dialysis nurse and my GP and in both cases the guidance I received was to sit tight, and if I started to exhibit any symptoms, the dialysis side suggested going to a doc in the box while my GP said let him know under the same circumstance. I feel great and I riding it out – other than a somewhat sore arm from the injections.
