As a group, those of us on PD tend to be older. With age comes a need, no, a requirement, to schedule appointments with a wide variety of doctors more frequently. I am entering such a phase.
This week I have an appointment to have an Ecogram done as a preliminary to checking out my heart. I also am scheduled to have the stitches removed from the surgery to remove the basil cell cancer on my left temple. The following week I have an appointment with my audiologist. My left hearing aid stopped working followed the same day by I hope, minor surgery to remove yet another cancer cell under my left chin. This is followed by an appointment to do a chemical stress test to ascertain more about my heart condition and then at month’s end a video conference with my cardiologist to discuss what all of the tests previously conducted portend for me. That is, where do we go from here?
This leads to introspection, and my mantra in writing this blog is Never Ring the Bell, adopted by US Navy SEALs. For them and me, this symbolizes perseverance and resilience. To do otherwise is to take the easy way out for those who wish to quit. Not ringing the bell is crucial for overcoming life’s obstacles and achieving success, while quitting leads to lifelong regret, and in the case of those of us on PD, potentially death.
This dude will never ring the bell. Bring it on! And yes, I made and make our bed every day suggesting there will be a tomorrow.
As a blogger with personal experience with Peritoneal Dialysis (PD), I can confidently say that the word “GRIT” perfectly embodies the spirit and resilience of patients undergoing this treatment. PD is a life-saving procedure that requires dedication, strength, and unwavering determination to face the challenges of managing a chronic illness.
G – for Growth: Patients on Peritoneal Dialysis experience tremendous personal growth throughout their journey. From learning how to perform the dialysis procedure to adapting to lifestyle changes, they constantly push themselves to grow and evolve in the face of adversity. It takes courage to embrace the changes that come with a chronic illness, and PD patients demonstrate remarkable resilience in their ability to adapt and thrive.
R – for Resilience: The resilience of PD patients is truly inspiring. Despite facing physical and emotional challenges on a daily basis, they exhibit an incredible strength that allows them to persevere through difficult times. Whether it’s dealing with treatment side effects, managing dietary restrictions, or coping with the unpredictability of their condition, PD patients show unwavering resilience in the face of adversity.
I – for Independence: One of the most empowering aspects of Peritoneal Dialysis is the level of independence it offers patients. Unlike traditional hemodialysis, which requires regular visits to a dialysis center, PD can be done at home on a flexible schedule. This independence allows patients to take control of their treatment and maintain a sense of autonomy over their lives. It also requires a great deal of self-reliance and responsibility, as patients must diligently follow their treatment plan to ensure their health and well-being.
T – for Tenacity: The tenacity of PD patients is truly remarkable. Despite the challenges they face, they approach each day with a sense of determination and perseverance that is awe-inspiring. Whether it’s dealing with setbacks in their health, navigating the complexities of the healthcare system, or advocating for their own needs, PD patients demonstrate an unwavering resolve to overcome obstacles and continue moving forward.
In conclusion, the concept of “GRIT” perfectly encapsulates the strength, resilience, independence, and tenacity exhibited by patients undergoing Peritoneal Dialysis. These individuals face each day with courage and determination, embodying the true meaning of perseverance in the face of adversity. Their unwavering spirit serves as a source of inspiration for us all, reminding us of the power of resilience amid life’s challenges.
Things are heating up concerning Fresenius shortening the drain and patient lines on the Liberty Cycler cassettes. The following post was made yesterday on PatientHub:
i still pee and have bowel movements since I can no longer get the 20 ft tubing. i am forced to sleep on the cold bathroom floor so I can pee and have diarrhea . Hopefully i can reach and sleep sitting up
once my supplies run out I will have to stop dialysis and die. Thank you very much for signing my death sentence Helen Giza
dont waste my time by referring me to my clinic as they have no clue
there is nothing to trouble shoot so Kaelyn not needed to reply
the decision to shorten the tubing on cycler cassettes is in very very poor judgement. Sad and sickened
Helen Giza lives matter!!!!!!!!!!”
On this past Wednesday I called in my monthly supply order to talk to a Fresenius supply rep directly. Before doing so I went to the supply order part of the PatientHub and checked on what supplies were being listed. The Liberty cassette was listed as the former, 10 to a box with long drain and patient lines. When talking to the supply rep in making my order, I quizzed her about this and was told they only ship the new cassettes, 14 to a box with 15-foot lines. When I checked my order yesterday, it was listed as the new cassettes. Obviously, this is confusing.
Rumors are spreading on the PatientHub that in October Fresenius will divert back to the former cassettes. When challenged as to the basis of the rumor, one participant posted the following:
Actually, who knows? This reminds me of the passage in the Bible, Matthew 24:6 where Jesus speaks about conflicts as part of the signs of the end times with the phrase “wars and rumors of wars.” We have a change and rumors of change.”
In celebration of the passing of Kris Kristofferson, my wife and I recently watched a YouTube program about his many accomplishments. One of his early hits was a song made popular by Janis Joplin titled “Me and Bobby McGee.” Her version of this song is linked at the end. In it was a line “Freedom is just another word for nothing left to lose.” I know that this song was written while the influence of the war in Vietnam was prevalent thought, and also that Kristofferson was previously a helo pilot and had completed Ranger training so he was probably directly influenced by his military service in the Army.
This got me to think beyond the obvious; how does this line apply to those of us with peritoneal dialysis? Thus the following:
“Freedom’s Paradox: Finding Liberation in the Constraints of Peritoneal Dialysis”
Introduction In the tapestry of human experience, certain phrases have the power to resonate deeply, transcending their original context to offer profound insights into the human condition. One such line comes from Kris Kristofferson’s iconic song “Me and Bobby McGee,” popularized by Janis Joplin: “Freedom’s just another word for nothing left to lose.” At first glance, this lyric might seem pessimistic, even fatalistic. However, when applied to the experience of someone living with a chronic illness, such as a person on peritoneal dialysis, it takes on a new and surprisingly uplifting meaning.
This article explores the philosophical implications of this powerful line, examining how it relates to the journey of those undergoing peritoneal dialysis. We’ll delve into the paradoxical nature of freedom when faced with significant health challenges and how constraints can sometimes lead to unexpected forms of liberation.
Understanding Freedom in the Context of Illness Traditionally, we tend to associate freedom with the absence of constraints – the ability to do what we want, when we want, without hindrance. It’s often linked to physical mobility, financial independence, and the luxury of choice. But what happens when life throws us a curveball in the form of a chronic illness that seems to strip away these conventional freedoms?
For someone on peritoneal dialysis, the very notion of freedom might seem laughable at first. After all, how can one feel free when tethered to a medical regimen that dictates much of daily life? Yet, it’s precisely in this seeming contradiction that we find a deeper, more nuanced understanding of what freedom truly means.
Peritoneal Dialysis: A Life-Changing Experience What is peritoneal dialysis? Before we dive deeper into our philosophical exploration, let’s briefly explain peritoneal dialysis. It’s a treatment for kidney failure that uses the lining of your abdomen (peritoneum) and a cleaning solution called dialysate to filter your blood. Unlike traditional hemodialysis, which typically requires frequent visits to a dialysis center, peritoneal dialysis can often be done at home, offering a different kind of freedom within its constraints.
The daily reality of dialysis patients Living with peritoneal dialysis means adapting to a new routine. There are regular treatments to manage, dietary restrictions to follow, and constant awareness of one’s health status. On the surface, this might seem like a severe limitation of freedom. But could it be that this very limitation opens the door to a different kind of liberation?
Nothing Left to Lose: The Paradox of Illness The stripping away of normalcy Chronic illness, including the need for peritoneal dialysis, often strips away what we consider “normal” life. The ability to eat whatever you want, to travel spontaneously, or to go about your day without medical considerations – these seemingly simple freedoms are no longer taken for granted. In a sense, you’ve lost the luxury of ignorance about your body’s fragility.
Finding freedom in limitations Yet, paradoxically, it’s in this stripping away that many find a new kind of freedom. When you’ve “lost” the ability to live life as you once did, you’re also freed from many societal expectations and self-imposed pressures. The phrase “nothing left to lose” takes on a positive spin – when you’ve already faced one of life’s biggest challenges, many smaller fears and inhibitions lose their power over you.
The Liberation of Acceptance Embracing the new normal One of the most profound freedoms that can emerge from the experience of peritoneal dialysis is the liberation that comes with acceptance. When you stop fighting against your reality and start working with it, a weight lifts. You’re free from the constant struggle against what cannot be changed, allowing you to focus your energy on what can be improved or enjoyed within your new parameters.
Discovering inner strength This acceptance often leads to the discovery of inner resources you might never have known you possessed. The strength required to face daily medical procedures, to advocate for yourself in the healthcare system, and to maintain hope in the face of challenges – these are powerful forms of freedom that many people never have the opportunity to develop.
Redefining Personal Values and Priorities Shifting perspective on what matters When faced with a life-altering condition like kidney failure requiring peritoneal dialysis, many people find their values and priorities shifting dramatically. Things that once seemed crucial – career advancement, material possessions, social status – might pale in comparison to the simple joy of a pain-free day or a meaningful conversation with a loved one.
The freedom to choose one’s attitude Viktor Frankl, the psychiatrist and Holocaust survivor, famously said, “Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances.” This profound truth resonates deeply with many on peritoneal dialysis. While you may not have chosen your medical condition, you have the freedom to choose how you respond to it.
The Unexpected Gifts of Illness Deeper connections and empathy Many people on peritoneal dialysis report experiencing deeper, more authentic connections with others. When you’re no longer able to hide behind the facade of perfect health, relationships often become more genuine. There’s also a newfound empathy for others facing challenges, creating a sense of connection to the broader human experience.
Appreciation for the present moment When the future is uncertain, and the past is a reminder of lost abilities, many find a new freedom in focusing on the present moment. The simple pleasures – a beautiful sunset, a child’s laughter, the taste of a favorite (kidney-friendly) food – take on new significance. This heightened appreciation is a form of freedom that many people in perfect health never experience.
Challenges and Opportunities in Medical Freedom Navigating healthcare decisions Peritoneal dialysis presents both challenges and opportunities when it comes to medical freedom. On one hand, you’re constrained by the necessity of treatment. On the other, you often have more control over your treatment schedule and location compared to traditional hemodialysis. This control, while within limits, can be profoundly empowering.
Advocating for oneself and others Many people on peritoneal dialysis discover a new voice as they learn to advocate for themselves within the healthcare system. This advocacy often extends to others in similar situations, creating a sense of purpose and community. The freedom to speak up, to make informed choices, and to help others is a powerful form of liberation.
Beyond Physical Constraints: Mental and Emotional Freedom Cultivating mindfulness and resilience The challenges of peritoneal dialysis often lead individuals to explore practices like mindfulness meditation or resilience training. These practices can offer a form of mental and emotional freedom that transcends physical limitations. The ability to find calm amidst discomfort or to bounce back from setbacks is a profound form of freedom.
Breaking free from societal expectations When you’re no longer able to meet many of society’s typical benchmarks for success or normalcy, you’re also freed from the pressure to conform to them. Many on peritoneal dialysis find liberation in defining success on their own terms, free from the weight of others’ expectations.
Conclusion As we’ve explored, the line “Freedom’s just another word for nothing left to lose” takes on a rich and nuanced meaning when applied to the experience of someone on peritoneal dialysis. Far from being a pessimistic statement, it can be seen as a gateway to a deeper understanding of what true freedom means.
The freedom found in the face of severe health challenges isn’t about the absence of constraints. Instead, it’s about finding new ways to express oneself, to connect with others, and to find meaning within the parameters life has set. It’s about the liberation that comes from accepting what cannot be changed and focusing on what can.
For those on peritoneal dialysis, freedom might mean the ability to choose one’s attitude, to find joy in small moments, to advocate for oneself and others, or to break free from societal expectations. It’s a freedom forged in adversity, often more profound and meaningful than the carefree liberty of perfect health.
In the end, the paradox of finding freedom through limitation reminds us of the incredible resilience and adaptability of the human spirit. It challenges us all, regardless of our health status, to reconsider what freedom truly means and to find ways to cultivate it in our own lives.
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.
