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.
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:
New to pd. Few weeks now. Does the feeling alone go away.
What motivates you to fight kidney disease every day?
…I am so nervous, I have anxiety attacks high bp
Dealing with depression… advice?
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?
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:
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.
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].
Physical symptoms: ESRD and dialysis can cause fatigue, pain, and other physical discomforts that may contribute to depressive symptoms[1].
Treatment-related stress: The need for regular dialysis procedures, potential complications, and the constant reminder of illness can increase anxiety and depression[2].
Social isolation: PD may limit patients’ ability to participate in social activities or maintain employment, leading to feelings of isolation and loneliness[1].
Fear and uncertainty: Concerns about the future, potential complications, and mortality can contribute to anxiety and depressive symptoms[4].
Body image issues: PD requires a catheter to be permanently inserted into the abdomen, which may affect self-image and contribute to depression[2].
Loss of independence: Reliance on dialysis and potential limitations in daily activities can lead to feelings of helplessness and despondency[5].
Biological factors: ESRD and dialysis can cause hormonal imbalances and changes in brain chemistry that may contribute to depression[1].
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.
No one talks much about what a typical day for an active 85-year-old male might look like. This blog relates what I have been up to (yesterday) in a day.
Readers of this blog know that my wife and I live in Pecan Plantation near Granbury, TX near Fort Worth. You also know that we maintain 15 flower beds and a well-kept lawn. Today, the bags of mulch/manure that we ordered from our local greenhouse came in. I first hitched up our trailer, then journed about 20 minutes north where we loaded it up with 60, yes 60 bags of the good stuff. Along with this, we loaded 21 bags of pine bark mulch into our X5.
Upon return home, we had to figure out how to get the trailer back into our single-car garage up over a 2″ or so concrete burm in the floor. I ended up using two clamps to clamp 2x2s to the back of the trailer and pushed it in with our ZTR mower. Meanwhile, I noticed on our local Nextdoor that a fellow resident of Pecan Plantation advertised a free Craftsman 10″ radial arm saw. I jumped on this, contacted him, and made arrangements to pick up the saw later in the afternoon.
Had lunch and left to pick up the saw. It’s heavy. The guy who gave us the saw was nice enough to deliver it to our house on his trailer. It is now in the garage. As you can see from the lead picture, it lacks the wooden table but that can be replaced. Let our son know what we had and it turns out he needs one for his new house construction project so everyone wins.
My typical day will finish off with a shower, doing my manual 2 liters of static fill, supper, a little TV, and then on the Cycler. Wake up in the morning to our loving golden retriever Dickens – lead picture – and repeat.
I have previously blogged about the title above. This blog adds to that blog.
I have received my first box of cassette extensions made necessary by Fresenius unilaterally reducing the length of both the drain and hookup line to 15 feet from 20 feet. As previously stated, in my setup, I require at least 20 feet of drain line to reach the toilet where we drain. With the 20-foot extension, I now have 35 feet of drain line, more than enough.
I tried out the new setup with the extended drain and had no alarms so we made it through the first night, from a drain perspective. But wait. The line to hook up to your catheter has also been reduced to 15 feet. I visited the lab last Friday and my attending nurse related that they have been bombarded with patient complaints about the change. People are having to redo their setups, vacation plans, and on and on as a result. For me, I no longer can reach a toilet to relieve myself if necessary; the line is not long enough to reach. I no longer can reach the desk where I accomplish morning biometrics; the line is not long enough. I can no longer reach the blinds in our master bedroom to open them in the morning; the line is not long enough. I barely have enough line to be able to sleep comfortably; the line is not long enough. You get the picture!
Fresenius screwed up in doing this, especially how they did it. Just like Biden pulling us out of Afghanistan but in this case they didn’t even ask.
As you may ascertain from the above, my lab results from this past Friday are in. I am a happy camper. While my Albumin is still low and out of range, we’ve turned the corner and it’s going up. Keep in mind that Albumin responds slowly to “treatment” such as increasing protein intake so we’re on the right track.
The lab reading for Kt/V is likewise reassuring. Recall that last month due to a much higher reading, I asked that the dwell time of the evening cycler routine be reduced to one hour forty-five minutes from two hours for each of four cycles. This was accomplished and this Kt/V being greater than 2.0 indicates we are OK.
The last result I’m sharing is Creatinine. This value maps to an eGFR of 6. Notice that it has steadily been improving. I asked Perplexity about improving Creatinine for a patient on dialysis with the following result:
For patients on peritoneal dialysis, a decreasing creatinine lab result generally indicates improving kidney function or effective dialysis treatment. Here’s a more detailed explanation:
Interpretation of Decreasing Creatinine Levels
A declining creatinine level in peritoneal dialysis patients can signify:
Improved Kidney Function: In some cases, residual kidney function may improve, leading to better creatinine clearance by the patient’s kidneys[1].
Effective Dialysis: A decrease in serum creatinine suggests that peritoneal dialysis is effectively removing waste products from the blood[1][3].
Adequate Dialysis Dose: It may indicate that the prescribed dialysis regimen is sufficient in clearing creatinine and other uremic toxins[3].
Factors to Consider
While decreasing creatinine is generally positive, it’s important to consider:
Muscle Mass: Creatinine is a byproduct of muscle metabolism. A decrease could also reflect loss of muscle mass, which is not desirable[1][4].
Nutritional Status: Poor nutrition can lead to decreased creatinine production, so dietary factors should be evaluated[4].
Hydration Status: Overhydration can dilute serum creatinine, giving a false impression of improvement[2].
Clinical Significance
Healthcare providers use creatinine levels, along with other markers, to:
Assess the adequacy of dialysis treatment
Adjust dialysis prescriptions if needed
Monitor overall kidney function and health status
Additional Considerations
It’s crucial to interpret creatinine results in conjunction with:
