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.
I have previously reported that I was recently denied renewal of my script for the Libre 3 CGM because the FDA had not approved it yet. When I brought this up at my dialysis team meeting last week, my nephrologist, Dr. Turner, questioned why, and I was at a loss to answer.
Since then, I have extensively researched this situation and, quite frankly, have NOT found any definitive research into it. At best, there is anecdotal suggestion that in PD patients, the PD fluid, which contains glucose, may be interfering or reacting with the resident glucose attempted to be measured by the CGM, resulting in an erroneous reading, typically hypoglycemic. Again, as previously reported, I experienced an excessive amount of low glucose alarms with the Libre 3 as many as six nights in a row rendering the use of the CGM moot.
While browsing FB recently, I encountered an ad for a CGM system named Eversense365 CGM. This device is embedded under your upper arm by your GP in office, is touted to last for a year, and is covered by Medicare. What all the PR BS fails to mention is if it works with and on PD patients. They are to call me shortly and I’ll report what transcribes.
In yesterday’s blog, I alluded to things being out of sorts and that today I hoped to clarify my situation. That’s what this blog is about.
Saturday night I hooked up to the Fresenius Cycler in a normal fashion. All indications in the setup were as they had been for the previous couple of years. When I woke up Sunday morning the second setup screen was displayed, and neither of the 6-liter bags had been used; they were both full. The treatment screen did not show usage for the date 10/9/2024. I had not received any treatment although the setup had been completed properly and treatment initiated.
I called the local nurse on duty and woke her up – sorry. She had no clue what was happening and directed me to tech support – that oxymoron term. After spending time going through tech support’s wickets, their solution was to try it Sunday night and see what happens which I did. Sunday night everything worked as it was designed to. So I’m stuck with the lingering sickness in my stomach that just perhaps, everything is not right with my Cycler butI’m stuck with it.
For reasons I hope to relay in tomorrow’s blog, my situation is not steady state. So while this shakes out, I had a little fun using two artificial intelligence agents to construct a song along the lines of Dialysis Blues which follows. I used a bot in Poe named MusicGen2000 to write the lyrics, and Remusic.ai to put it all together. Turn up the volume and enjoy – until the rubber meets the road that is. Hank
I previously quizzed my dialysis nurse about Calcitriol and my Calcification and she passed my query on to the team nutritionist who provided the following input:
“You are on the next to lowest dose we prescribe to control parathyroid hormone levels, and your trend is very stable near the lower end of our recommended range 160 to 399 (up to 720 is considered “in goal” but less stable). The algorithm I use instructs me to leave your dose as is, however due to the recent finding of calcification, I will leave a note for Dr. Turner to ask if she wants to decrease to twice a week or discontinue and see how you respond.”
I am scheduled to meet with my dialysis team this morning to see the bottom line shortly. Stand by.
In a nutshell, I have Type II Diabetes, am on PD, and have exhibited signs of vascular calcification. I am also currently prescribed a 0.25 MCG capsule of Calcitriol five days a week. That’s a lot to place on an intersecting Venn Diagram. My question is, has the injecting of calcitriol led to or contributed to my vascular calcification? I turned to Perplexity to find out more about this drug with the following drug and results:
Prompt: Everything about the drug Calcitriol as prescribed to a peritoneal dialysis patient including chemical composition and potential side effects for calcificationAnswer
Answer: Calcitriol is an active form of vitamin D commonly prescribed to peritoneal dialysis patients. Here’s an overview of its key aspects:
Chemical Composition
Calcitriol is a synthetic version of the active form of vitamin D3, also known as 1,25-dihydroxycholecalciferol. Its chemical formula is C27H44O3
Dosage is individualized based on the patient’s calcium and PTH levels
Typically taken orally as capsules or liquid
Dosing frequency may range from daily to three times per week
Potential Side Effects
Common side effects include:
Nausea and vomiting
Constipation
Dry mouth
Headache
Muscle or bone pain
More serious side effects can include:
High calcium levels (hypercalcemia)
Dehydration
Confusion
Weakness
Irregular heartbeat
Risk of Calcification
One significant concern for peritoneal dialysis patients taking calcitriol is the increased risk of calcification, particularly:
Vascular calcification
Soft tissue calcification
Nephrocalcinosis (kidney calcification)
This risk is due to the medication’s effect on calcium levels and metabolism. Careful monitoring of calcium, phosphate, and PTH levels is crucial to minimize this risk
Regular blood tests to monitor calcium, phosphate, and PTH levels
Dietary restrictions may be necessary to control calcium and phosphate intake
Dose adjustments based on lab results and clinical response
Vigilance for signs of hypercalcemia or calcification
Drug Interactions
Calcitriol may interact with:
Phosphate binders
Calcium supplements
Certain antacids
Thiazide diuretics
Digoxin
Healthcare providers should be aware of all medications a patient is taking to avoid potential interactionsIn conclusion, while calcitriol is an essential medication for many peritoneal dialysis patients, its use requires careful management and monitoring to maximize benefits while minimizing risks, particularly the risk of calcification.
