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.
In review, while having Moh’s surgery to remove cancer on my left temple my dermatologist commented that he had never seen as much artery calcification. I brought this up to my cardiologist, who suggested I visit a neurologist. This led me to conduct some due diligence to determine a neurologist’s involvement. Along the way, I found something disturbing. This is the reference document: https://pmc.ncbi.nlm.nih.gov/articles/PMC8439554/
The bottom line is that medial arterial calcification (MAC) in the temporal arteries, often seen in conditions like end-stage renal disease, lacks a specific causal treatment. However, managing associated conditions such as chronic kidney disease or diabetes can help slow progression6. What this says to me is that the calcification my dermatologist found has a possible high correlation with my CKD and 50 years of being diabetic and further, cannot be treated -> “lacks a specific causal treatment.”
Monday at 1300 I had the stitches removed from my latest go-around with the dermatologist. Upon removal of the stitches, I was informed that there was some residual cancer and the doctor wanted to talk to me. He said the squamous cells were there and few and we had three choices: 1. Do nothing which he recommended, 2. Cut away again, or 3. Freeze. We agreed with 1. and that’s where we stand.
I will introduce the use of a Bot named Doctor Sage which is available for general use on the AI Poe. I inputted the following prompt and received a layman’s version of the Dermatopathology report provided below. I encourage readers to start using such online tools for their medical reports.
Prompt: I received the following dermatopathology report, which I need a layman’s version of: Skin left inferior postauricular: Residual squamous cell carcinoma in situ and central reparative changes. The lesion extends to the black-inked 6-9 o’clock margin. No residual invasive squamous cell carcinoma was identified.
DoctorSage
Poe
Sure! Here’s a layman’s version of the dermatopathology report you received:
Sample Location: The skin sample was taken from the area behind the left ear (postauricular).
Findings:
There are leftover (residual) cancerous cells known as squamous cell carcinoma (SCC) that are in a very early stage and have not spread to deeper layers (this is referred to as “in situ”).
The report mentions that there are signs of healing or repair in the skin where the cancer was.
The extent of the Lesion: The cancerous area extends to the edges marked with black ink, specifically at the 6 to 9 o’clock positions on a clock face (imagine the area being around the back of the ear).
Invasive Cancer: Importantly, the report states that there are no signs of more serious, invasive squamous cell carcinoma, which would mean the cancer has spread deeper into the surrounding tissues.
In summary, the report indicates that while there are still some cancerous cells present, they are not in an advanced stage, and there is no evidence of the cancer spreading further into the skin. It suggests that healing is occurring, but monitoring or further treatment may be necessary.
