This past weekend’s WSJ had an interesting article for me by Joe M. Moore titled “I Was in Great Health. So Why Were My Arteries Clogged?”
Joe M. Moore’s essay recounts his unexpected diagnosis of Sitosterolemia, a rare genetic disorder causing arterial plaque buildup, despite a healthy lifestyle. His high calcium score, revealed by a cardiac CT scan, initially baffled doctors. After further testing, Sitosterolemia was identified, highlighting the challenges of rare disease diagnosis and the importance of patient advocacy. Moore emphasizes proactive screenings and persistent questioning to ensure accurate diagnoses. The essay also discusses the high rate of misdiagnosis in the US and advocates for increased patient involvement in healthcare decisions.
So what you may ask. You may recall that while undergoing a dermatology procedure to remove skin cancer from my left temple the physician commented that he had never seen a temporal artery with such a large amount of calcification as mine. I fed this info to my cardiologist and received nothing back. Nada, Zip. This article provides insight into plausible steps to take to ascertain if Sitosterolemia is the case, and indeed, what degree of calcification I display.
As a side note, thanks to the persistence of my wife, I am now scheduled for a heart procedure/look-see on 12/30/2024. I have to go to Ft Worth on 12/26/2024 to see the attending nephrologist since my local kidney doctor does not have privileges there. We have been advised to take our cycler and associated gear in case we have to stay overnight. An overnight stay is in order if I have stents installed. One day at a time sweet Jesus.
As a current peritoneal dialysis patient, it is in my best interest to keep abreast of the latest research on the subject. Here’s what Perplexity has to say about this:
Peritoneal dialysis (PD) remains a crucial treatment option for patients with kidney failure, and recent research has focused on improving outcomes and addressing challenges associated with this modality. Here are some of the latest developments in PD research:
Technological Advancements
Recent innovations in PD technology aim to enhance patient outcomes and reduce treatment-associated harm:
Early Detection of Peritonitis: New technologies are being developed to enable point-of-care detection of peritonitis, potentially extending the treatment period on PD by preventing transfer to hemodialysis[1].
Glucose Exposure Reduction: Novel approaches are being explored to minimize the harmful effects of peritoneal glucose exposure, including:
Devices designed to deliver constant infusion of glucose at lower concentrations
Alternative osmotic agents such as xylitol
Protective additives like alanyl-glutamine or carnitine[1]
Clinical Practice Guidelines
The 2024 update of the Clinical Practice Guideline for the Prevention and Management of Peritoneal Dialysis Associated Infection in Children provides comprehensive treatment guidance based on recent literature and registry data. Key updates include:
New recommendations for antibiotic therapy of peritonitis, reflecting evolving antibiotic susceptibilities and stewardship practices
Updated clinical benchmarks
Recommendations for future research to address important knowledge gaps[3]
Outcomes and Practice Patterns
The Peritoneal Dialysis Outcomes and Practice Patterns Study (PDOPPS) continues to advance the understanding of optimal PD practices worldwide:
Phase 1 of PDOPPS included 7,629 patients from 215 dialysis facilities across 7 countries
Phase 2 is expanding to include Colombia and South Korea, focusing on novel areas of research
The study aims to promote appropriate use of PD, extend technique survival, and improve quality of life for PD patients[4]
Emerging Research Areas
Recent studies have explored various aspects of PD care:
Optimization of ultrafiltration and prevention of volume overload
Improved detection and prevention of cardiovascular disease in PD patients
Investigation of risk factors for peritonitis and technique failure
Associations between CKD-MBD biomarkers and survival
Use of PD for patients with chronic liver failure and acute kidney injury
Impact of periodontal disease on PD patients
Methods to increase physical activity and quality of life
Pathophysiology of peritoneal membrane aging[6][7]
Future Directions
Ongoing research efforts are focused on:
Developing goal-directed dialysis prescriptions that take a holistic view of patient outcomes
Addressing inequities in access to PD across different regions and populations
Improving PD education and training for both patients and healthcare providers
Investigating the potential of incremental PD approaches
Exploring the use of PD in various patient populations, including those with comorbidities[1][5]
As the field of PD continues to evolve, these research efforts aim to improve patient outcomes, increase the availability and utilization of PD worldwide, and address the ongoing challenges associated with this important kidney replacement therapy.
I subscribe to an AI service named Pictory. Using Pictory, you can input text via AI to be turned into a video. Recently Kate from Pictory sent users a fairly complicated prompt to use in your AI engine of choice to generate a script to be inputted into Pictory to turn into a video. I tried two scripts in Poe, one in the main Poe and one in a specific bot to author scripts. The first is the first below and the second is the specific script bot. Pretty cool stuff.
Last night my wife and I watched a movie on AcronTV that was based on a true story of the introduction of Viagra in the UK. It took place in the early nineties and was targeted toward men who were diabetics. The story centered on five men and their female companion’s social interaction resulting from the medication’s first trials. It was well done and interesting.
At breakfast, my wife and I discussed the film and in so doing the subject of diabetes and women’s sexual drive came up. Neither of us had ever heard of any research into this potential duality and thus this blog.
I turned to Perplexity with the following Prompt and results: is there any research into the impact of diabetes on the sexual drive of females?
Yes, there is a relationship between diabetes and sexual drive in females. Women with diabetes are more likely to experience a decrease in libido or lower sex drive compared to women without diabetes[1][2][5]. This can be attributed to several factors:
Hormonal changes: Diabetes can disrupt the normal balance of sex hormones like estrogen and testosterone, which can reduce sex drive and make it harder to become aroused[5].
Nerve damage: High blood sugar levels can cause nerve damage, affecting sensation in the genitals and making it difficult to feel sexual stimulation[1][5].
Reduced blood flow: Diabetes can damage blood vessels, restricting blood flow to sexual organs and potentially affecting arousal[5].
Psychological factors: Depression, anxiety, and stress associated with managing diabetes can contribute to a lower libido[2][5].
Medication side effects: Some medications used to treat diabetes or its complications, such as blood pressure drugs or antidepressants, can negatively impact sex drive[2][5].
Vaginal dryness: Women with diabetes may experience vaginal dryness due to reduced blood flow and nerve damage, which can make sex uncomfortable and decrease desire[1][5][8].
It’s important to note that while diabetes can affect sexual function, the impact varies among individuals. Open communication with healthcare providers and partners, along with proper diabetes management, can help address these issues and maintain a healthy sex life[2][5].
Now that I have reviewed the two-year point (9/30/202), it’s appropriate to investigate the ensconced thinking about longer-term effects on patients. To accomplish this I turned to Poe with the following results:
Peritoneal dialysis (PD) can be an effective long-term treatment option for patients with kidney failure, but it does come with potential side effects that may arise over time. Here are some of the long-term side effects associated with peritoneal dialysis:
Peritonitis Peritonitis is an infection of the peritoneum, one of the most serious complications of PD. It can occur if bacteria enter the peritoneal cavity through the catheter. Symptoms include abdominal pain, fever, and cloudy dialysate. Recurrent episodes can lead to scarring of the peritoneum and reduced effectiveness of PD.
Catheter-Related Issues The catheter used for PD can lead to complications such as blockage, leakage, or dislodgement. Long-term use may also result in skin infections or tunnel infections at the catheter site.
Changes in Body Composition Patients on PD may experience changes in body composition, such as increased body fat and decreased muscle mass. This is often due to the caloric content of the dialysate, which can lead to weight gain if not managed properly.
Abdominal Complications Over time, the presence of the dialysate in the abdominal cavity can cause issues such as abdominal distension or hernias. The increased pressure from the fluid can also affect abdominal organs.
Glucose Metabolism Issues The glucose in the dialysate can contribute to insulin resistance and worsen diabetes control in diabetic patients. Long-term exposure may increase the risk of developing diabetes.
Electrolyte Imbalances Patients on PD may experience imbalances in electrolytes, such as potassium and sodium. Monitoring and adjustments in treatment are necessary to maintain proper levels.
Bone and Mineral Disorders Long-term dialysis can affect bone health, leading to conditions such as renal osteodystrophy. This occurs due to altered calcium, phosphorus, and vitamin D metabolism.
Psychosocial Impact Living with a chronic condition like kidney failure can lead to psychological effects such as anxiety, depression, or social isolation. Patients may struggle with the demands of treatment and lifestyle changes.
Conclusion While peritoneal dialysis can be a beneficial treatment for many patients, it is important to be aware of the potential long-term side effects. Regular follow-ups with healthcare providers, proper training in catheter care, nutritional management, and psychological support can help mitigate these risks and improve the overall quality of life for patients on PD. Each patient’s experience is unique, so tailored care and monitoring are essential.
We received a call from our cardiologist’s office yesterday. We were promised that we would know this week when my heart surgery is to be scheduled, probably for Thanksgiving week. As a result, my wife called off our annual family Thanksgiving get-together. A GD is not due back from Europe where she just earned her Masters in Marine Science until the first week or so in December so we’re doing everything involving the holidays all at once.
My wife also received the results of the same two tests I just underwent and came out OK so that’s a relief!
The weather here in North Texas has taken on a definite Fall blend, with cool nights and days in the seventies.
My dialysis nurse Cindy has been promoted to a more senior management position within Fresenius, so more change is in the works for me. She has provided the best care, and we will sorely miss her.
Tech hint: If you like to watch programs on YouTube and are tired of the continuous interruptions for commercials AND are running a VPN, point your VPN to Albania. It seems that Google doesn’t currently have a translator for the Albanian language and does not include commercials for this feed. It works for us.
At 85 and soon to be 86, I am one of the older dialysis patients. Although on dialysis, I have been blessed with a functioning mind and body. I can still work, walk, and ponder. As such, life is good. However, time itself is taking on more significance. Let’s delve into the concept of time vis-a-vis more experienced patients.
For older adults undergoing dialysis, time takes on a new significance. Each session in the clinic can be a reminder of the fragility of health, leading to reflections on how best to use the time they have. As these patients navigate the complexities of their treatment, it’s essential to recognize each moment’s value and embrace life fully, drawing on lessons from the past
Understanding the Value of Time For many older dialysis patients, time is no longer just a commodity; it has become a cherished resource. Their schedules may feel restrictive with frequent treatments, often every night. However, this can also serve as an opportunity to prioritize what truly matters. The reality of dealing with a chronic illness can shift perspectives, making individuals more aware of the importance of relationships, passions, and personal well-being.
Making the Most of Each Moment
Cultivating Relationships One of the most profound lessons from the past is the importance of human connection. Dialysis can be isolating, but it also presents an opportunity to strengthen bonds with family and friends. Patients can schedule regular visits or video calls, turning their treatment days into social occasions. Sharing experiences, stories, and laughter can offer emotional support and alleviate the burdens of illness.
Pursuing Passions and Hobbies Many older adults have spent decades building skills and hobbies that bring them joy. Dialysis patients can use their time to reconnect with these interests or explore new ones. Whether it’s painting, gardening, reading, or learning a new instrument, engaging in creative activities can foster a sense of accomplishment and joy, making the time spent in treatment feel more meaningful.
Mindfulness and Reflection The act of slowing down during dialysis can offer a unique opportunity for mindfulness. Patients can practice meditation, journaling, or simply reflecting on their lives during treatment. This intentional focus can lead to greater awareness of their thoughts and feelings, allowing for a deeper appreciation of life’s moments, even the small ones. Lessons from the past remind us that introspection can be a powerful tool for personal growth and acceptance.
Setting Goals Establishing personal goals can provide a sense of purpose. Whether these goals are related to health, personal development, or social engagement, having something to strive for can transform the experience of treatment. Patients can set realistic, achievable goals that inspire them to make the most of their time. This might include committing to a certain number of family gatherings or completing a book each month.
Seeking Support and Resources Finally, older dialysis patients should not hesitate to seek support from healthcare providers, social workers, or community organizations. Many resources are available to help patients navigate their treatment and improve their quality of life. Knowing that they are not alone can be empowering and can enhance their ability to enjoy their time.
Lessons from the Past Throughout history, many have faced adversity and learned to cherish the moments that matter. Older dialysis patients can draw inspiration from these stories, understanding that even in challenging times, joy can be found. Embracing the present while learning from the past can lead to a more fulfilling life, even amidst the struggles of chronic illness.
In conclusion, the value of time for older dialysis patients is profound. By nurturing relationships, pursuing passions, practicing mindfulness, setting goals, and seeking support, they can transform their time into a meaningful journey. Each moment is an opportunity to live fully, love deeply
By now, the subject is getting old without any tangible changes in the situation. Despite a massive hue and cry from patients, Fresenius is still shipping cycler cassettes with the 15-foot patient and drain lines. Although I have reached out to three government agencies and the CEO of Fresenius NA, I have received nothing back. Until…
Recently, out of the blue, I received a package from Fresenius containing several kinds of biohazard plastic bags and instructions to double bag the item I complained about. On the surface, I was asked to send Fresenius one of the new cassettes for their complaint department to do whatever with. The right hand at Fresenius doesn’t know what the left hand is doing.
I’m still waiting to hear from my cardiologist when I am scheduled for a look-see at my heart to ascertain if I have a blockage that may be reduced by stent(s) or balloon (s). While the doctor showed a sense of urgency at our meeting setting this up, the queue to accomplish the procedure is apparently long.
All the the wounds from having my left temple cancer removed have healed as has the work under my left chin. So now, I am free of the aftermath of dermatology work. I am scheduled back in next March at which time I’m certain the need for further skin cancer removal will be found.
The temperature here in North Texas has finally cooled, with nighttimes in the 40-60 range, and daytime in the 70 range. We have been steadily working on getting all of our flower beds ready for winter as the plants die off. I am in the process of designing a railroad tie border for the 100-foot-long bed along our back fence that will also have three or four six-foot posts to house trellises.
I have given up following the Dallas Cowboys in the NFL and shifted over to KC. At least there is something of interest in the antics of #87 and his entourage.
Yesterday evening I received a call from the EversenseCGM rep I blogged about yesterday. As expected, their device HAS NOT been approved for use by PD patients nor could he express any confidence that it would work as advertised for us/them. So write them off for now.
I turned to Perplexity with the Prompt: Has any CGM been approved for use by Peritoneal Dialysis patients and received the following response:
Based on the search results provided, there does not appear to be any continuous glucose monitoring (CGM) systems that have explicit FDA approval specifically for use by peritoneal dialysis patients. However, there are some relevant points to consider:
General CGM approvals: Several CGM systems have received FDA approval for general use in people with diabetes, including the Dexcom G6, Abbott Freestyle Libre, and Eversense systems[3][4][5]. These approvals do not specifically mention peritoneal dialysis patients.
Dialysis patient exclusions: Historically, patients with end-stage renal disease (ESRD) on dialysis have often been excluded from clinical trials for CGM devices[1][2]. This has limited the available data on CGM accuracy and effectiveness in this population.
Recent studies: Some recent research has begun to evaluate CGM use in dialysis patients, including those on peritoneal dialysis. For example, a study mentioned in search results [5] found a good correlation between CGM and blood glucose meter values in dialysis patients.
Off-label use: While not explicitly approved, some CGM devices may be used off-label in peritoneal dialysis patients under the guidance of healthcare providers.
Future developments: The FDA has shown interest in expanding access to CGM technology. The recent approval of the first over-the-counter CGM (Dexcom Stelo) for adults not on insulin therapy suggests a trend toward broader availability[6].
In summary, while there is no specific FDA approval for CGM use in peritoneal dialysis patients, ongoing research and evolving regulatory approaches may lead to more explicit guidance or approvals for this population in the future. Patients on peritoneal dialysis should consult with their healthcare providers to determine if CGM use is appropriate for their individual situation.
