Today is my anniversary; I have been on PD for two years. This week I plan on working on some basics about Chronic Kidney Failure, its causes, treatment, and future. In this complex world, we live in, we tend to at times lose sight of the ball. We are on dialysis for a reason and let’s not forget that.
Today we will delve into the most basic question which is the root of us being on dialysis, and that is Chronic Kidney Failure, or CKF/aka CKD.
Summary
The podcast explains chronic kidney failure, also known as chronic kidney disease, which is a condition where the kidneys gradually lose their ability to filter waste and excess fluids from the blood. It explores the root causes of this condition, including diabetes, high blood pressure, and infections, and discusses various indicators of kidney failure such as fatigue, swelling, and changes in urination. The podcast further highlights the ramifications of kidney failure, emphasizing the potential for cardiovascular disease, anemia, and ultimately end-stage renal disease (ESRD) if left untreated. It stresses the importance of managing underlying health conditions, maintaining a healthy lifestyle, and seeking regular medical check-ups to prevent or delay the progression of this serious disease.
Friday I received a call from a Fresenius rep following up on my filing of a formal complaint concerning the recent modifications to the Liberty Cycler cassettes.
The initial thrust of the conversation was to ascertain whether I was able to complete my dialysis routine which is lame and I informed the caller of this. After some stumbling around and being pushed by me for definitive information on what was being done about it, the caller fessed up that Fresenius was considering returning to the original cassette. I guess this is progress.
The caller stated that I should continue to update my online complaint with them as I learn more about the user’s gripes, which I have done multiple times. To summarize, some of the top complaints are:
With shorter drains and patient lines can no longer reach the toilet
The bubble to ascertain if fibrin is present has been deleted.
An extension must now be used on the drain line which leads to more tubing waste.
The decision to modify the cassette was made entirely without any obvious consultation with either patients OR Fresenius clinic staff.
The decision is viewed very negatively as a move by Fresenius to increase profitability at the expense of patients.
Fresenius is not approachable in a case such as this. Patients have no idea who to turn to to voice their anguish.
The previous week we had a new stone-coated steel roof installed on our home in Pecan Plantation due to severe hail damage last May. The video at the bottom documents this process. It is a Class 4, 50-year roof that results in lower attic temps, reduced homeowner insurance rates, and peace of mind not having to be concerned about hail which does happen here regularly.
The second big deal this week is that on Thursday early in the morning I’m going in for Mohs surgery on my right temple. As a result of overexposure to the sun, especially while on active duty in the US Navy, my head is an active cancer pool. This surgery will be followed by plastic surgery on Friday to make me handsome again. Sorry to say, I’ve been there and done this before after having the entire top of my scalp cut out and replaced by a graf from my upper thigh. At least this time the doc is going to try to pull it together.
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.
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.
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.
