Tag: setup (Page 8 of 42)

Like many patients on peritoneal dialysis, I am taking a phosphorous binder, for me named Velphoro. I chew at least two of these horse-sized yuk wafers with my breakfast and sometimes with a meaty meal. At present, I receive them via my military pharm, ExpressScripts at about $38.00 for 3 month’s supply.

Saturday I received a postcard-type communication from Fresenius stating that starting 1/1/2025, binders would be covered as part of Medicare (part B.) My RX will be transferred to FreseniusRx from some point on. The cost henceforth should be mapped into my overall PD coverage by Medicare/Tricare for Life. No more $38. To provide background to those, not of the community and question what is this phosphorous thing all about, read on..

Excessive phosphorus levels (hyperphosphatemia) can present several complications for patients on peritoneal dialysis:

Cardiovascular Complications

Hyperphosphatemia is associated with increased cardiovascular morbidity and mortality in peritoneal dialysis patients[1][3]. It contributes to:

• Vascular calcification
• Arterial stiffness
• Increased risk of cardiovascular events

Bone and Mineral Disorders

Too much phosphorus disrupts normal bone and mineral metabolism, leading to:

• Secondary hyperparathyroidism
• Renal osteodystrophy
• Increased risk of bone fractures

Soft Tissue Calcification

Excess phosphorus can cause calcium-phosphate deposits to form in soft tissues throughout the body, including:

• Blood vessels
• Heart valves
• Joints
• Skin

Anemia

Hyperphosphatemia may contribute to anemia in peritoneal dialysis patients by:

• Interfering with erythropoiesis
• Shortening red blood cell survival

Itching

Many peritoneal dialysis patients with high phosphorus levels experience severe itching (pruritus), which can significantly impact quality of life.

Nutritional Issues

Dietary phosphorus restriction, often necessary to control levels, can lead to:

• Protein malnutrition
• Muscle wasting
• Overall poor nutritional status

Proper management of phosphorus levels through dialysis prescription, diet, and medications is crucial for peritoneal dialysis patients to prevent these complications and improve outcomes[2]. Regular monitoring of phosphate clearance and serum levels is important, as peritoneal dialysis may provide less effective phosphorus removal compared to hemodialysis in some patients[4].

Citations:
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10386128/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4737570/
[3] https://www.nature.com/articles/s41598-020-74412-2
[4] https://academic.oup.com/ndt/article/31/9/1508/1751782
[5] https://www.sciencedirect.com/science/article/pii/S0085253815528755
[6] https://www.mayoclinic.org/tests-procedures/peritoneal-dialysis/about/pac-20384725
[7] https://www.kidneyfund.org/living-kidney-disease/health-problems-caused-kidney-disease/high-phosphorus-hyperphosphatemia
[8] https://www.kidney-international.org/article/S0085-2538%2815%2952875-5/fulltext

Here’s the deal. My supply order arrived as advertised this morning, right in the window advertised. But it was not “my supply order,” but one Fresenius decided. Seems like they are no longer supplying the cassette boxes with 20-foot-long supply and drain lines in a 10-count box. They now supply 14 cassettes with 15-foot-long lines. I need at least a 20-foot drain to reach the toilet where we drain the cycler overnight. Did anyone bother to ask me what I needed? Hell no.

I called Fresenius Supply and was told I now have to order drain line extensions that come 28 to a box. Ok, I can do that, but wait, such drains are not listed as something we as mere patients can order. The voice on the other end of the phone at Fresenius couldn’t believe that we could not order drain extensions, went off the line, came back, and acknowledged that we presently could not order them.

Fresenius is FUBAR. It is obvious they made a business decision to modify cassette packaging. Let’s see. We’ll chop the lines down but increase the number of cassettes per box and charge more. Ok, and if patients need a longer drain line we’ll sell it to them (actually whomever is paying the bill) and make even more money. Not once have I ever been asked my opinion about anything having to do with MY treatment from a supply perspective. Fresenius is acting as if they are a government that always knows what’s best. Some democracy, isn’t it? Makes Hogan’s goat look like a precision machine!

Six of the last seventeen nights I have experienced cycler alarms. But I am not alarmed no pun intended. In each case, I had the cycler line kinked under my body. By merely shifting my body and straightening out the line, the alarms cleared.

My wife has noticed that where supplies are delivered by Fresenius which are scheduled for today BTW over time the carts they use and the load on them has started to stretch and hump up our hallway and bedroom where we store dialysis disposables. The wheels on their cart are small, on the order of six inches or less which by necessity places lots of weight on a small area creating enormous pressure on the carpet and underlayment. She wants to get new carpeting but we have come up with a solution to this problem.

Our running toilet of yesterday has been solved – at a cost of $150.00 for a plumber. Here’s the deal. The toiler started running from time to time. Our son installed a new flapper value. The toilet continues to leak down after flushing. I installed a new flapper valve and a seat. The toilet continued to lead down. The plumber came, and installed a new flapper which fixed the problem. What is the difference – the flapper valves we were using were plastic and somewhat ridged; his was rubber and more flexible. For this knowledge $150. Go figure.

My peritoneal dialysis treatment is boring, in the groove, doing what it is designed to do – keeping me alive. What more can I say? My weight hasn’t varied by more than 1.5 lbs for weeks. My glucose is right in there. My BP this morning, without drugs keep in mind, was 103/70. The only exciting thing going on this week in the PD world is supply delivery on Wednesday.

For those of you experiencing difficulty my condolences. Right now PD is a piece of cake with added protein.

An author named Andy Andrews has a book out about an individual who is a “noticer.” Here’s some detail on the concept:

The concept of being a “noticer” refers to the ability to observe and pay attention to the small, often overlooked details in one’s surroundings and daily life. Here’s a more detailed explanation of what it means to be a “noticer”:

Heightened Awareness:
Noticers cultivate a heightened state of awareness, constantly scanning their environment and attuning themselves to the subtleties that often go unnoticed by others.
They are keenly observant, taking in the sights, sounds, smells, and sensations around them with a level of sensitivity that allows them to perceive the world in a more nuanced way.
Attention to Detail:
Noticers have a natural inclination to pay attention to the small, seemingly insignificant details that others might overlook or dismiss as unimportant.
They might notice the way the light filters through a window, the unique patterns in the bark of a tree, or the slight changes in someone’s facial expression.
This attention to detail allows them to gain a deeper understanding and appreciation for the world around them.
Curiosity and Exploration:
Noticers are inherently curious individuals, constantly driven to explore and discover new things. They are not content with simply accepting the surface-level appearance of the world.
They actively seek out opportunities to learn, investigate, and uncover the hidden layers of meaning and significance that lie beneath the obvious.
This curiosity leads them to ask questions, seek out new perspectives, and engage in deeper exploration of the world and the people in it.
Mindfulness and Presence:
Being a noticer requires a certain level of mindfulness and presence in the moment. Noticers are adept at staying focused on the present, rather than being distracted by the past or the future.
They can fully immerse themselves in the here and now, allowing them to fully absorb and appreciate the richness of their experiences.
This mindfulness and presence helps noticers to derive more meaning and fulfillment from their daily lives, as they can savor the small, often overlooked moments that others may miss.
Empathy and Connection:
Noticers often possess a heightened sense of empathy, as their attention to detail and nuanced understanding of the world allows them to better relate to the experiences and perspectives of others.

By noticing the subtle cues and expressions of those around them, noticers can more readily connect with others on a deeper level, fostering meaningful relationships and a greater sense of understanding and compassion.
In summary, being a “noticer” involves cultivating a heightened awareness, attention to detail, curiosity, mindfulness, and empathy – qualities that can enrich one’s life and deepen one’s connections with the world and the people in it.

I submit to you, that to be at the zenith of peritoneal dialysis, we must become astute “noticers.” As a side, it is obvious to me that PhDs have this mindset to some extent in that by their nature, PhDs are trained to see patterns or behaviors or associations that are not necessarily self-evident. That’s what we are trained to do, sometimes largely through statistics, but not always. This ability often is the starting point of research that ends up going down many rabbit holes but in the end, is very productive.

For example: After its initial approval for type 2 diabetes, Ozempic has since been approved for additional indications:
In 2021, the FDA approved Ozempic for the treatment of chronic weight management in adults with obesity or overweight with at least one weight-related condition.
In 2022, the FDA approved Ozempic for the treatment of cardiovascular disease risk reduction in adults with type 2 diabetes.

We are still plugging away at getting more Proteins into my diet to bring up my lab albuminn reading. Our son, who is on a rather strict Keto diet, recently recommended the cereal Magic Spoon, which is available at both Amazon and WalMart. It comes in four flavors, is low in carbs, and has zero sugar and grains. The peanut butter-flavored variety has 14 G of protein, counting milk.

Post markets a hi-protein cereal advertising 20 g of protein. I bought two of these to try. Lastly, there is a granola cereal with something like 14 g of protein. I tried it this morning and didn’t think too much of it.

I happened to stop by the already-prepared salad display at WalMart and found some salads with 17 g of protein in them so I bought several. I also bought cube steak, filet mignon, bacon-wrapped tenderloin, and a package of 93/7 hamburger patties to round out this week’s protein as a start.

BTW, my weight this morning was 141.0, hanging in there. In the dentist’s chair yesterday afternoon having my teeth cleaned my blood pressure was 110/66. Keep in mind this is without any BP meds for some time. As I write this blog at 1710 on 8/20/2024, the temp outside is 108. See lead graphic. Yes, it is warm in North Texas.

I have previously blogged about my recent low lab albumin reading, about albumin itself, and how much daily protein is the norm to raise it. This blog is a little about what we are incorporating into my diet as a result.

I am eating a serving of smear case daily, usually with my evening meal along with a healthy serving of a fruit like strawberries. This provides about 21 g of protein. with supper plus. I have this along with a fortified drink with the stuff Fresenius provided which is another 16 g for a total of 37 g of protein for supper.

For breakfast, I’m having a cereal such as mini wheat (5g), a heaping tablespoon of peanut butter (4+g), and a Brazil nut (1/2g) along with 6 oz of V8 (2g).

For lunch, it varies. Today I’m having a shake consisting of vanilla powder with 31 g of protein, a little 2% milk, strawberries, and sucrose sweetener.

If you add this up, you’ll ascertain that I’m right at 72-80 or so as the recommended amount to raise albumin. I have labs on 9/6/2024 so we’ll see.

My Dialysis Team Meeting took place as scheduled this morning. We had a meeting that did not resolve my low Albumin reading from my latest lab. Recall that it dropped from 3.6 to 3.1 and an acceptable reading is over 4. We discussed six ways from Sunday what may have changed in my life and/or lifestyle to merit this change with no conclusions. As often happens in medicine, we’re now going to wait and see what my labs are as a result of my next scheduled lab on 9/6/2024. I will be doing an adequacy test at that time also so there will be a lot on the table.

One unique aspect of the meeting was that my dietician provided me with a 32 oz bottle of LiquaCel to try out as a protein supplement. My nephrologist also approved my use of protein powder to improve my protein intake. I’ve included a PR-type video below from the company that makes LiquaCel to familiarize readers with their products.

One of the many little nagging things that plague me as a result of kidney failure is bad breath. I do all the right things having to do with my teeth and mouth. I have my teeth cleaned three times a year and see the dentist like clockwork. I floss and brush every night without fail. Still, my wife informs me constantly that I have bad breath and to go brush my teeth. This leads to me wonder what the correlation is between being on peritoneal dialysis and bad breath. I quizzed Perxiplity about this with the following results:

There is a correlation between peritoneal dialysis (PD) and bad breath, also known as halitosis, in patients with end-stage renal disease (ESRD). Studies have shown that high blood urea nitrogen (BUN) levels and low salivary flow rates are associated with halitosis. Peritoneal dialysis can help decrease the level of halitosis by reducing BUN levels and increasing salivary flow rates over time[1][3][5].

Chronic renal failure, which leads to a buildup of waste in the blood (uremia), can result in halitosis. This condition is often described as having an ammonia-like odor, and it is one of the non-oral causes of bad breath in patients with kidney disease[4][5]. Additionally, oral health issues such as dry mouth and changes in taste are common in patients undergoing peritoneal dialysis, particularly those with diabetes[2].

Overall, while peritoneal dialysis can help reduce halitosis, the presence of bad breath may still occur due to underlying renal issues or other oral health conditions.

Citations:
[1] https://pubmed.ncbi.nlm.nih.gov/20338971/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3525369/
[3] https://journals.sagepub.com/doi/10.3747/pdi.2009.00089
[4] https://southgablesdental.com/what-your-kidneys-and-bad-breath-have-in-common/
[5] https://www.ejgm.co.uk/download/comparison-of-systemic-oral-malodor-in-patients-undergoing-hemodialysis-and-peritoneal-dialysis-7176.pdf