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How To Officially Complain About New Cassettes

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.

Age, PD, and Hearing: The New Apple Low-Cost Hearing Aid

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:

  1. 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].
  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].
  3. 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].
  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].
  5. Reduced Stigma: As AirPods are widely used, experts believe this could help reduce the stigma associated with wearing hearing aids[5].
  6. 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].
  7. Personalization: The hearing profile can be used to personalize the AirPods Pro listening experience, even for those with little to no hearing loss[4].
  8. Media Assist: A new feature that helps boost certain parts of speech on phone calls or instruments within soundtracks[4].
  9. Clinical Validation: The Hearing Aid feature was clinically validated in a controlled, randomized study[7].
  10. 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.

Citations:
[1] https://www.soundly.com/blog/airpods-as-hearing-aids
[2] https://www.cbsnews.com/news/fda-approves-apple-airpods-2-as-hearing-aids/
[3] https://www.resetera.com/threads/fda-approves-apple-airpods-pro-2-for-use-as-hearing-aids.980367/
[4] https://www.apple.com/newsroom/2024/09/apple-introduces-airpods-4-and-a-hearing-health-experience-with-airpods-pro-2/
[5] https://www.cbsnews.com/news/apples-new-airpods-pro-double-hearing-aid/
[6] https://education.apple.com/discussion/250016863
[7] https://www.apple.com/newsroom/2024/09/apple-introduces-groundbreaking-health-features/
[8] https://www.reddit.com/r/apple/comments/1ffjwt8/use_your_airpods_pro_2_as_hearing_aids_now/

Workarounds New Shorter Cycler Cassettes

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.

Velphoro & COVID

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.

Peritoneal Dialysis & Depression

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

My Dialysis Day

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.

More Thoughts Fresenius Unilaterally Changing Cassettes

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.

Albumin, Kt/V & Creatintine

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:

  1. Improved Kidney Function: In some cases, residual kidney function may improve, leading to better creatinine clearance by the patient’s kidneys[1].
  2. Effective Dialysis: A decrease in serum creatinine suggests that peritoneal dialysis is effectively removing waste products from the blood[1][3].
  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:

  • Other laboratory values (e.g., BUN, electrolytes)
  • Clinical symptoms
  • Overall health status
  • Dialysis parameters (e.g., ultrafiltration volume, dialysate composition)

Healthcare providers will consider all these factors when evaluating the significance of decreasing creatinine levels in peritoneal dialysis patients.

Citations:
[1] https://www.mayoclinic.org/tests-procedures/creatinine-test/about/pac-20384646
[2] https://my.clevelandclinic.org/health/diagnostics/16380-creatinine-clearance-test
[3] https://www.ncbi.nlm.nih.gov/books/NBK544228/
[4] https://www.mountsinai.org/health-library/tests/creatinine-blood-test
[5] https://www.medicalnewstoday.com/articles/322380
[6] https://www.kidney.org/kidney-topics/understanding-your-lab-values-and-other-ckd-health-numbers
[7] https://www.medicalnewstoday.com/articles/319892
[8] https://www.healthline.com/health/low-creatinine

Diabetic Control & PD

There is a fine line in Diabetic Control for those of us on Peritoneal Dialysis. It’s as though we’re balancing on a knife’s edge. Let me explain. Over more than 40 years of being a Type II diabetic, I have learned that my glucose readings are correlated very closely with my weight, and lately, with exercise. Just a few pounds weight variation can make all the difference in my readings. Tie this to work that approaches being strenuous, especially tied to the heat we experience here in N. Texas in the summer, and my glucose drops.

For the last three nights, my wife has been awakened by my Libre 3 alarm because of low glucose readings. (I can’t hear it because I don’t have my hearing aids in.) Each night she has provided orange juice to remedy the situation and we have managed to go back to sleep. My last five glucose entries into the Cycler for morning biometrics have been 85, 86, 75, 67, and 71. Keep in mind the last three entries are after ingesting a full 8 oz of orange juice during the night.

In response to this, I reduced my intake of insulin to 9 units from 10 units. As I write this blog about an hour after breakfast on Wednesday, Libre 3 indicates my glucose to be 93 and this is after putting a mocum of honey on my cereal. So tonight I intend to drop my insulin dose even more, down to 6 or 7 units.

Why did I titled this blog “Diabetic Contol & PD?” Because, unlike many patients with PD, I have not had any problems to date with weight. If anything, It has been constant in the low 140s pounds. This is still the case even though I have upped my protein intake in an attempt to improve my albumin lab results. There’s always something, isn’t there?

Is There A Better Way Than Dialysis?

Paula Span writing in a 9/1/2024 article in The New York Times titled “Dialysis May Prolong Life for Older Patients. But Not by Much” suggests that such care only added 77 days in a recent study. The article goes on to suggest that “Conservative Kidney Care” or “Supportive Kidney Care” may be more germane.

Specifically, the cited article states ” …dialysis can prolong the lives of patients with kidney failure. But a new study published in the journal Annals of Internal Medicine analyzed data from a simulated trial involving records from more than 20,000 older patients (average age: about 78) in the Veterans Health Administration system. It found that their survival gains were “modest.”

How modest? Over three years, older patients with kidney failure who started dialysis right away lived for an average of 770 days — just 77 days longer than those who never started it.”

If those of you on PD experienced what I did at the onset, my options were transplant, dialysis, or death the preferred treatment in that order. I was not, to my recollection, ever apprised of “conservative kidney care” and/or “supportive Kidney Care.” Let’s get Perplexity to help us unpack these terms.

Conservative kidney care is an approach to managing end-stage kidney disease without dialysis, focusing on symptom management and quality of life rather than extending life through renal replacement therapy. Here’s an overview comparing conservative kidney care to dialysis:

Conservative Kidney Care

Conservative kidney care, also known as comprehensive conservative care or conservative management, involves:

  • Holistic, patient-centered care for those with stage 5 chronic kidney disease (CKD)[1]
  • Focus on symptom management and quality of life
  • Medication management to control symptoms
  • Dietary modifications with relaxed restrictions compared to dialysis
  • Psychosocial and spiritual support
  • Involvement of palliative care services

Key aspects:

  • Maintains quality of life and mental well-being in many patients[4]
  • Median survival ranges from 1-41 months after choosing this option[4]
  • Avoids the burdens associated with dialysis treatments
  • May be preferred by some older, frail patients with multiple comorbidities

Dialysis

Dialysis is a renal replacement therapy that artificially filters waste from the blood. It includes:

  • Hemodialysis: Blood is filtered through a machine
  • Peritoneal dialysis: The abdominal lining is used to filter blood

Key aspects:

  • Can extend life significantly for many patients
  • Requires frequent treatments (typically 3-4 times per week for hemodialysis)
  • Associated with lifestyle disruptions and potential complications
  • This may lead to a rapid decline in physical function for some older, frail patients[3]

Comparison

  • Survival: For older, frail patients with multiple health conditions, survival may be similar between conservative care and dialysis[2]
  • Quality of life: Conservative care patients often report better quality of life compared to those on dialysis[2]
  • Symptom burden: Symptom levels are likely to be similar in both groups[2]
  • Healthcare utilization: Conservative care may involve less time spent in hospitals compared to dialysis[4]

Decision-making

The choice between conservative care and dialysis should involve shared decision-making, considering:

  • Patient’s overall health status and prognosis
  • Personal values and preferences
  • Impact on quality of life
  • Family and social support

It’s important to note that conservative kidney care is now recognized as a valid “fourth treatment option” alongside hemodialysis, peritoneal dialysis, and transplantation in many renal centers[2].

Citations:
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8160947/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4953263/
[3] https://www.nature.com/articles/s41581-021-00511-6
[4] https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2790050
[5] https://www.sciencedirect.com/science/article/abs/pii/S0272638611013096
[6] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/kidney-failure
[7] https://www.sciencedirect.com/science/article/pii/S2157171615322024
[8] https://www.happiesthealth.com/articles/kidney-health/conservative-care-non-dialytic-approach

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