Tag: fresenius (Page 5 of 47)

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.

Bottom line: It’s working for me thus far.

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:

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:

1. 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:
2. 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.

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..

1. Most simple: Go old fashion and buy a bed pan. The are available on Amazon for as little as $10.00. See link here:
2. 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.
3. 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.
4. 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.

Wednesday was my scheduled day to order supplies. I use the Fresenius-sponsored app to do so. It has a wealth of information about most aspects of PD including providing a Forum where people may post questions and start a thread. I browsed through the threads before placing my supply order, BTW I noted we can now order the extension for the new, shorter cassette, and was confounded by several threads having to do with new PD patients in particular, being extremely depressed to the point of being despondent.

Here are a few of the comments at the start of the threads:

1. New to pd. Few weeks now. Does the feeling alone go away.
2. What motivates you to fight kidney disease every day?
3. …I am so nervous, I have anxiety attacks high bp
4. Dealing with depression… advice?
5. I am having a really tough time right now coping with being on PD. I am experiencing a great amount of stress and grief. I don’t know what to do and I feel like I am on an emotional roller coaster. Is there help?
6. And on and on.

PD presents a problem for many patients. None of the threads were started by a person who was a male. This is not to say in any way that only females are prone to this form of behavior and may just be more apt to voice their perceived woes.

The responses, and there were many, mostly stated in one form or another that families were where patients gathered the most strength from. More often than not, children and/or grandchildren and living for them were the reasons offered to keep on truckin’. While this is all well and good, the question as to what is the root cause of these maladies is not addressed. I turned to Perplexity for research into this area with the following results:

Patients on peritoneal dialysis (PD) often experience symptoms of despondence and depression for several reasons:

1. Chronic illness burden: PD is a treatment for end-stage renal disease (ESRD), a chronic condition that significantly impacts a patient’s physical health and daily life[1]. The ongoing management of ESRD and its complications can lead to feelings of hopelessness and despair.
2. Lifestyle restrictions: PD requires patients to adhere to strict schedules, dietary limitations, and fluid restrictions. These constraints can cause frustration and a sense of loss of control over one’s life[1].
3. Physical symptoms: ESRD and dialysis can cause fatigue, pain, and other physical discomforts that may contribute to depressive symptoms[1].
4. Treatment-related stress: The need for regular dialysis procedures, potential complications, and the constant reminder of illness can increase anxiety and depression[2].
5. Social isolation: PD may limit patients’ ability to participate in social activities or maintain employment, leading to feelings of isolation and loneliness[1].
6. Fear and uncertainty: Concerns about the future, potential complications, and mortality can contribute to anxiety and depressive symptoms[4].
7. Body image issues: PD requires a catheter to be permanently inserted into the abdomen, which may affect self-image and contribute to depression[2].
8. Loss of independence: Reliance on dialysis and potential limitations in daily activities can lead to feelings of helplessness and despondency[5].
9. Biological factors: ESRD and dialysis can cause hormonal imbalances and changes in brain chemistry that may contribute to depression[1].
10. High prevalence: Studies have shown that depression is significantly more common in PD patients compared to the general population, with one study reporting a prevalence of 98.5% among PD patients[1].

It’s important to note that depression in dialysis patients, including those on PD, is often underrecognized and undertreated[1]. Regular screening for depression and providing appropriate psychological support and treatment can help improve the mental health and overall well-being of PD patients.

Citations:
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4394933/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9784045/
[3] https://karger.com/kbr/article/41/1/86/185661/The-Level-of-Anxiety-and-Depression-in-Dialysis
[4] https://www.davita.com/education/ckd-life/support/your-emotions-and-chronic-kidney-disease-ckd
[5] https://www.elsevier.es/es-revista-european-journal-psychiatry-431-articulo-depression-cognitive-distortions-in-hemodialysis-S021361632100001X
[6] https://www.researchgate.net/publication/364304306_A_cross-sectional_study_on_assessing_depression_among_hemodialysis_patients
[7] https://health.usnews.com/conditions/mental-health/depression