Author: Henry Feeser (Page 6 of 51)

In the past two posts this week, we have discussed Chronic Kidney Disease and eGFR, the lab measurement that tracks kidney failure. As eGFR approaches its lower limits, decisions have to be made as actions to take, if any. This podcast is about this process.

Summary

The podcast provides a comprehensive overview of treatment options for patients with an estimated glomerular filtration rate (eGFR) of 5, indicating advanced kidney failure. The options presented include dialysis, with both hemodialysis and peritoneal dialysis discussed in detail, kidney transplantation from both living and deceased donors, conservative management focusing on symptom control and quality of life, and clinical trials exploring new therapies such as innovative dialysis techniques and regenerative medicine. The podcast emphasizes the importance of collaborative decision-making between patients and healthcare providers to determine the best treatment course based on individual health circumstances and preferences.

Podcast link below followed by the text used to generate it:

An estimated glomerular filtration rate (eGFR) of 5 mL/min/1.73m² indicates advanced kidney failure, often termed end-stage renal disease (ESRD). Patients face significant health challenges at this stage, but medical advancements provide several treatment options. This text will explore the current medical options for patients with an eGFR of 5.

1. Dialysis

Dialysis is a life-sustaining treatment for patients whose kidneys can no longer function adequately. There are two primary types:

Hemodialysis

• Process: Blood is filtered through a machine that removes waste and excess fluid.
• Frequency: Typically performed three times a week in a dialysis clinic, though some patients may opt for home hemodialysis.
• Considerations: Requires access to the bloodstream (via a fistula or catheter) and can be time-consuming.

Peritoneal Dialysis

• Process: The lining of the abdomen (peritoneum) acts as a filter. A dialysis solution is infused into the abdominal cavity, where it absorbs waste products before being drained.
• Flexibility: Can be performed at home and adjusted based on the patient’s lifestyle.
• Options: Continuous ambulatory peritoneal dialysis (CAPD) and automated peritoneal dialysis (APD) are common methods.

2. Kidney Transplantation

Kidney transplantation is the most effective long-term treatment for ESRD, offering a chance for improved quality of life and better survival rates compared to dialysis.

Living Donor vs. Deceased Donor

• Living Donor: If a compatible living donor is available, the transplant can be scheduled electively.
• Deceased Donor: Patients may be placed on a waiting list for a kidney from a deceased donor, which can vary in wait time based on factors like blood type and overall health.

Considerations

• Eligibility: Comprehensive evaluation is required to determine if a patient is a suitable candidate for transplantation.
• Immunosuppression: Post-transplant, patients must take medications to prevent organ rejection.

3. Conservative Management

In some cases, patients may opt for conservative management, particularly if they are not candidates for dialysis or transplantation due to other health issues.

Goals

• Symptom Management: Focus on managing symptoms such as pain, nausea, and electrolyte imbalances.
• Quality of Life: Emphasizing comfort and quality of life rather than aggressive interventions.

Supportive Care

• Palliative Care: Involves a multidisciplinary team to assist with physical, emotional, and spiritual needs.
• Nutritional Support: Diet modification may be necessary to manage symptoms and maintain as much kidney function as possible.

4. Clinical Trials and Emerging Therapies

Patients with advanced kidney disease may consider participation in clinical trials exploring new therapies, including:

• Innovative Dialysis Techniques: Research is ongoing into more efficient and less burdensome dialysis methods.
• Regenerative Medicine: Studies are investigating stem cell therapies and other approaches aimed at repairing kidney function.

Conclusion

An eGFR of 5 signifies a critical point in kidney health, but it is not the end of the road. Patients have multiple options, including dialysis, transplant, conservative management, and participation in clinical trials. Each option has its own set of benefits and challenges, and decisions should be made collaboratively with healthcare providers, considering individual health circumstances and personal preferences. With the right support and treatment, patients can manage their condition and maintain a quality of life that is meaningful to them.

In yesterday’s blog, we explored Chronic Kidney Disease. Today we’re going to look at the lab measurement, eGFR that tracks how well kidneys are performing as they continue to fail with eGFR decreasing from 30 to 5.

Summary

This podcast explains how a patient’s estimated glomerular filtration rate (eGFR), a measure of kidney function, changes as chronic kidney disease progresses. It describes the different stages of kidney disease, with eGFR values ranging from 30 to 5, outlining the symptoms and treatment options for each stage. The podcast emphasizes the importance of understanding the disease, maintaining a healthy lifestyle, and working closely with a healthcare team to manage symptoms and potentially prepare for dialysis or a kidney transplant.

Podcast link below:

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.

Podcast link below:

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:

1. With shorter drains and patient lines can no longer reach the toilet
2. The bubble to ascertain if fibrin is present has been deleted.
3. An extension must now be used on the drain line which leads to more tubing waste.
4. The decision to modify the cassette was made entirely without any obvious consultation with either patients OR Fresenius clinic staff.
5. The decision is viewed very negatively as a move by Fresenius to increase profitability at the expense of patients.
6. 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.

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:

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