On 10/7/2024 I attempted to contact Helen Giza, CEO of FMCNA via email to express my concern and frustration concerning their recent changes to the Liberty Cycler Cassettes. The ramifications of this change have been reported on herein on several occasions and are also being reported on Facebook groups and the PatientHub app that Fresenius provides.
On 10/8/2024 I printed out my former email and sent it to the following address:
Helen Giza, CEO FMCNA, 920 Winter Street, Waltham, MA 02451-1457
I had my monthly visit to the clinic this past Thursday for labs. Right on time, I received a text that they were ready and used the Fresenius PatientHub to review the first results, and then download a PDF of the entire report. Nothing out of the ordinary thus far but wait. Here’s where it gets interesting.
I went to Google’s ever-improving NotebookLM where I uploaded the PDF and asked it to generate a podcast embedded below of my lab results. I also queried it about the most significant abnormalities present in my bloodwork. These follow:
●Low red blood cell count (RBC), hemoglobin, and hematocrit: These values are all significantly lower than the reference range, indicating anemia.
●High red blood cell distribution width (RDW): This suggests there is a wide variation in the size of the patient’s red blood cells, which is often seen in anemia.
●High glucose: This could indicate hyperglycemia, which may be a sign of diabetes or other metabolic disorders.
●High iron: This is unusual in the setting of anemia and may warrant further investigation.
●High transferrin saturation (Tsat) and serum iron, along with normal ferritin: This pattern can be seen in iron overload disorders, such as hemochromatosis. However, it is important to note that other factors can also influence iron studies, and further testing may be needed to confirm a diagnosis.
●High hemoglobin A1c (HbA1c): This reflects elevated average blood glucose levels over the past 2-3 months, further supporting the possibility of diabetes.
The podcast link follows:
The lab report used to generate the AI-driven response(s) is below:
As I previously discussed in several blogs, the new cycler cassettes with shorter drain and patient lines are causing several/many patient problems. This past Friday I had my monthly scheduled labs and the subject of cassettes came up. I was informed that the clinic has received instructions to report any problems with the new cassettes especially involving peritonitis. While this is jumping to the extreme, I see it as at least someone “up there” has shown interest in problems created by the new cassettes.
The Fresenius-supported PatientHub continues to report numerous instances of patients being frustrated and quite frankly, pissed off at what Fresenius did. I have been steadily cutting and pasting these remarks to the formal complaint filing I made with Fresenius but it seems to be largely an exercise of poking your finger into a cloud. Other than the phone call from Fresenius to ascertain if I was able to complete my treatment, they have been silent. It has been noted on the PatientHub that apparently Fresenius has deployed an AI bot to respond to sincere input providing essentially the same response to all, and that is to report all problems to your clinic.
We don’t want to be too serious about life. With this thought in mind, I’ve included below a picture of our golden retriever Dickens playing with his horse ball.
This past Wednesday as scheduled I met with my new cardiologist with the thought in mind of obtaining insight into the calcification of my temporal artery. Didn’t really happen – clarification that is – meeting yes. He was much more concerned that since I had had a triple-bypass in 2017, that I was on the cusp, nine years hence, to have a followup check in this area.
He ordered two procedures as a starting point in my diagnosis, a chemical stress test and a PET/CT Scan. These tests are currently scheduled throughout October 2024 and we’ll go from there. More was discussed about me being a diabetic than currently on perietoneal dialysis which was somewhat surprising.
As previously reported, last Thursday I had a big chunk of basil cancer cut out of my left temple. In doing so, the doctor noted that I had a great deal of calcification in the temporal artery and veins in this area.. So much that he commented that he had never i his years of practice seen so much and that I should take it on board and take action.
Turns out I have an appointment with a new cardiologist next Tuesday as my previous one retired so the timing is good. As the result of my research, this blog resulted and establishes a direct tie between being on PD and calcification. Please read a summary of the podcast below, listen to the podcast and view the underlying text below.
Summary
The Podcast explores the experience of a person living with peritoneal dialysis (me) and their recent diagnosis of extreme calcification in the temporal artery. The author explains peritoneal dialysis and its benefits but also highlights the potential for complications like calcification, which can be exacerbated by chronic kidney disease. The author then outlines the implications of temporal artery calcification, including its potential to cause cardiovascular problems, and explains their proactive approach to managing the condition. The Podcast concludes with an encouraging message about staying informed.
The podcast link follows:
Understanding Extreme Calcification in the Temporal Artery: A Personal Journey Living with peritoneal dialysis comes with its unique set of challenges, and the recent diagnosis of extreme calcification in the temporal artery adds another layer to my health journey. As I navigate this situation, I’m learning the importance of awareness, understanding, and proactive health management.
What is Peritoneal Dialysis? Peritoneal dialysis (PD) is a treatment for kidney failure that uses the lining of the abdomen, or peritoneum, to filter waste from the blood. Unlike hemodialysis, which uses a machine to filter blood, PD allows patients to manage their treatment at home. While it offers flexibility and a semblance of normalcy, it also requires vigilance regarding diet, fluid intake, and overall health.
The Discovery of Calcification Recently, during a routine check-up, my doctor noted signs of extreme calcification in the temporal artery. This condition, often associated with aging or other health issues, involves the buildup of calcium in the artery walls, which can lead to reduced blood flow and increased risk of cardiovascular problems.
Understanding the implications of this diagnosis was daunting. I learned that calcification can be influenced by various factors, including chronic kidney disease (CKD), which I have been managing through PD. The connection between kidney health and vascular health is significant, as the kidneys play a crucial role in regulating minerals like calcium and phosphorus.
The Implications of Temporal Artery Calcification Extreme calcification in the temporal artery can lead to serious health risks. It may increase the risk of hypertension, stroke, and other cardiovascular diseases. Symptoms can range from headaches and dizziness to more severe neurological issues if blood flow is significantly compromised.
The temporal artery is also crucial as it supplies blood to the head and neck. Any impairment in its function can lead to complications that impact overall quality of life. The realization that my dialysis treatment could be contributing to this condition was unsettling, prompting me to take a closer look at my health management strategies.
Taking Control of My Health In light of this diagnosis, I knew I needed to be proactive. Here’s how I approached my situation:
Consulting Specialists: I scheduled appointments with both my nephrologist and a vascular specialist. Understanding the interplay between my kidney health and vascular condition was essential for creating a comprehensive treatment plan. Dietary Adjustments: With the guidance of a nutritionist, I revisited my dietary habits. Reducing sodium and phosphorus intake became a priority to mitigate the risk of further calcification. Regular Monitoring: I increased the frequency of my check-ups and tests to monitor my vascular health closely. Early detection of any changes is crucial. Lifestyle Changes: Incorporating regular, gentle exercise was another step I took. Physical activity can help improve circulation and overall cardiovascular health. Staying Informed: I educated myself about calcification and its relationship with kidney disease. Knowledge empowers me to make better choices and advocate for my health. Conclusion Living with peritoneal dialysis requires constant vigilance, and the discovery of extreme calcification in the temporal artery has underscored the need for a holistic approach to health management. While the diagnosis was alarming, it has also been a catalyst for positive change in my life. By prioritizing my health, seeking expert advice, and making informed decisions, I am determined to navigate this journey with resilience and hope.
As I share my story, I hope to encourage others facing similar health challenges to stay informed and proactive. Our health journeys may be filled with obstacles, but with awareness and action, we can work towards a better quality of life.
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.
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.
