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My Life Other Than Dialysis

I have been promising a video of our yard here in Pecan Plantation, North Texas. I shot the embedded video below on August 1, 2024. If you are attentive, you can see our golden retriever Dickens go gliding by. The yard is my counterlife to being on dialysis. Although it’s very hot at this time of year, if you pace yourself you can still get work done. I post this so my readers can view that there IS a life other than dialysis if you just go for it. Enjoy our yard; I do.

GP Versus Renal Doctor; And I’m in the middle

I could have titled this blog “Caught between a rock and a hard place” as well. Let’s digress for a minute. Did you ever wonder where this saying originates? Read on:

The idiom “between a rock and a hard place” describes a situation where someone faces a difficult decision between two equally undesirable options. This phrase is often used to convey a sense of being trapped in a dilemma with no favorable outcomes.

Origin of the Phrase

The expression has roots in ancient Greek mythology, specifically in Homer’s Odyssey, where Odysseus must navigate between two sea monsters: Scylla, a cliff-dwelling creature, and Charybdis, a dangerous whirlpool. This perilous passage symbolizes the tough choices one must make when confronted with two equally challenging paths[1][4].

While the phrase is often associated with Greek mythology, its popular usage in English began in the early 20th century, particularly among miners in Bisbee, Arizona, who described their plight of choosing between the harsh conditions of the mines (the rock) and the equally tough environment outside (the hard place) during difficult times[3][5]. The idiom gained traction in American culture during the Great Depression, as people faced tough choices regarding basic needs[3].

Usage and Variations

The phrase can be expressed in several forms, including “stuck between a rock and a hard place” or “caught between a rock and a hard place,” all conveying the same meaning of being in a tough situation with no easy solutions[3]. Other synonymous expressions include “on the horns of a dilemma” and “between the devil and the deep blue sea,” which similarly illustrate the concept of facing difficult choices[3].

In summary, “Between a rock and a Hard Place” effectively captures the essence of being caught in a challenging situation, rooted in both mythological and historical contexts.

Citations:
[1] https://www.gingersoftware.com/content/phrases/between-a-rock-and-a-hard-place
[2] https://english.stackexchange.com/questions/32785/expression-caught-between-a-rock-and-a-hard-place
[3] https://grammarist.com/idiom/between-a-rock-and-a-hard-place/
[4] https://americadomani.com/the-italian-origins-of-the-phrase-between-a-rock-and-a-hard-place/
[5] https://www.phrases.org.uk/meanings/between-a-rock-and-a-hard-place.html

Back to the present now. On two occasions I have found myself between desired treatment by my GP and input from my renal doctor, and vice versa. It is unpleasant and puts me, the patient, in the middle as a go-between. It’s as if there is an invisible barrier between them that could easily be resolved by a short phone call. But wait; I have observed no indication of a desire to communicate with each other on their part. It’s up to me to carry the message back and forth.

The latest occurred when my renal doctor questioned the dosage of a statin I’m taking for cholesterol stating that it was, at 40 mg, at maximum and we had nowhere to go with it if needed, which is not at this time. She recommended a new injectable drug. The injection is Repatha, a PCSK9 inhibitor that can significantly reduce LDL cholesterol levels. However, according to my GP, it is too powerful for my situation, is not on my approved insurance list, and costs something like $500 an injection. So the ball is now back in my court to go back to my renal doctor and attempt to explain why my GP is not buying into the potential change in meds. Isn’t life swell?

What is the latest in research into peritoneal dialysis?

We’ve been cruising alone lately, without much thought to what’s going on in the world of peritoneal dialysis research. To catch up on this topic, I quizzed Perplexity with the following results – interesting to say the least:

  • Urgent-Start Peritoneal Dialysis (USPD): Initiation within 14 days of catheter insertion, aimed at providing rapid dialysis access for patients with acute needs[1].
  • Patient Selection Criteria: Specific criteria for selecting patients suitable for USPD, considering factors like overall health and urgency of dialysis initiation[1].
  • Timing and Data Limitations: Challenges in determining the optimal timing for USPD initiation due to limited data[1].
  • Catheter Insertion Techniques: Various techniques for catheter insertion to minimize complications and improve outcomes[1].
  • Prescription and Modality Choices: Different peritoneal dialysis prescriptions and modality options tailored to patient needs[1].
  • Outcomes and Efficacy: Evaluation of mechanical and infectious complications, survival rates, and healthcare utilization compared to other dialysis modalities[1].
  • Barriers and Optimization Strategies: Multidisciplinary approaches, education programs, and clinical pathways to enhance the success of USPD[1].
  • Future Research Areas: Identifying gaps in current knowledge and proposing areas for future investigation to improve USPD practices[1].

Citations:
[1] https://www.mdpi.com/2673-8236/4/1/2
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10550002/
[3] https://www.ncbi.nlm.nih.gov/books/NBK532979/
[4] https://www.mayoclinic.org/tests-procedures/peritoneal-dialysis/about/pac-20384725
[5] https://www.kidney.org/patients/peers/dialysis
[6] https://www.kidney.org/kidneydisease/howkidneyswrk
[7] https://journals.sagepub.com/home/ptd
[8] https://ispd.org

More Ho Hum Peritoneal Dialysis News

I have been on the reduced cycle time for three nights now. I have not experienced a great reduction in my overall time on the cycler. Previously, I had been on two hours per cycler for a total of eight hours dwell time plus fill and drain overhead meant I was spending over eleven hours per night just on the cycler. As I log off the cycler these past three nights, I’m getting times of 10-7, 10-14, and 10-33. These times are NOT the expected one-hour time reduction (15-minute cycler time reduction times four cycles equals one hour.) Seems that my cycler has a mind of its own and also its own math.

Over the weekend my wife and I bought four American Holly trees in two-gallon containers to use as a semi-privacy barrier between us and a neighbor that has a rather junked up side and back yard. Not trashy, but they live kinda inside and outside their house and it shows. On Monday I shopped around and bought all the soil amendments needed. Now I have to dig the humongous holes needed to properly plant them. More fun in the North Texas heat. (See lead graphic.)In case you wondered, we are in growing zone 8. We can expect American Holly to grow 2-4 feet per year, and grow to 20-24 feet tall with a spread of 8-10 feet. We could not tell if we got both male and female plants since there were no labels and both are needed to get the holly berries which birds really like. Time will tell.

I am in the second week of taking meticulous care of our new sod. The first week I watered it 3x per day. This week, the second, we cut back to 2x per day. It is really taking hold and looking healthy, even though we have had several days way in the 90s.

We managed to almost complete weeding the 100-foot-long flower bed in the back. While it looks somewhat bare, that’s 100% better than it looked before. We’re due for mowing Wednesday and I intend on doing a complete walkaround so I can show and articulate to those who visit here what we are working with.

PD Monthly Meeting Lucrative

My monthly meeting this past Friday with my dialysis team is worth more than just passing comment. We covered the points I had previously provided my dialysis nurse and then some. To wit:

  1. Why the RenaPlex-D was not on order? Seems my renal doctor had taken a couple of weeks’ vacation and while she was gone no one could sign the prescription. Now that she is back, that has been taken care of. I should be receiving the vitamins in due course.
  2. Am I still on injections of B12 and Testosterone or not? The rub here centers around my most recent lab reading of Hemoglobin which was up to 14.5; the lab goal is 10-11.0, and my doc gets uneasy when it’s above 14.0. She posits that perhaps testosterone injections could lead to this increase and thus stop this shot. Secondly, during my last labs, my need for B12 was checked and it was found that currently my B12 is dead in the middle of the desirable range and thus the need for B12 injections is moot.
  3. My last wKt/V reading was 2.29 which Fresenius rounds to 2.3. I quizzed my doc with such a robust reading, perhaps we could cut back on my Liberty Cycler dwell times from 2 hours per cycle to 1 hr 45 minuses which would knock an hour total off the time I’m on the cycler. Keep in mind with overhead mainly caused by drain time, I was spending over 11 hours per day just hooked up to the cycler. Add the setup and tear-down times to this and I was easily spending over 12 hours per day just doing cycler treatment. Add everything involved in my afternoon manual 2-liter fill, and you can see dialysis consumed the vast majority of my 24-hour day allotted. Luckily, she agreed to this with the stipulation that if it didn’t work out, that is my next adequacy test went too far south, we would go back to the previous 2-hour dwell to which I agree.

Toe Pain from Peritoneal Dialysis Requirements?

During lunch yesterday, inter alia, I informed my wife about some new ailments I am encountering. They include pain in my right center toe area making it difficult to walk at times, floaters in my left eye, the one that has not had cataract surgery, and my weight balancing which readers know I continue to work on.

My wife responded that she too from time to time experiences pain in her toe area and perhaps it is due to “Purines.” So we pursued Purines with a Perplexity search with the following results: (bear with me, it potentially IS related to PD requirements!)

Purines are chemical compounds found naturally in many foods and also produced by the body. When broken down, purines form uric acid. While purines are a normal part of diet and bodily processes, consuming too many can lead to health issues[1][4].

High levels of uric acid in the blood, known as hyperuricemia, can cause problems like gout and kidney stones. Gout is a painful form of arthritis where uric acid crystals accumulate in joints, causing inflammation[2][4].

Foods high in purines that should be limited include:

  1. Organ meats
  2. Alcohol, especially beer
  3. Certain seafood like sardines and anchovies
  4. Sweetened beverages with high-fructose corn syrup[1][4]

A low-purine diet can help manage conditions like gout by reducing uric acid levels. This diet emphasizes:

  • Fruits and vegetables (except asparagus, cauliflower, spinach)
  • Low-fat dairy
  • Whole grains
  • Eggs and nuts
  • Limited lean poultry and fish[1][2][4]

Staying hydrated is also important, as water helps flush out uric acid[5]. While a low-purine diet can be beneficial, it’s typically used alongside medication for treating gout and related conditions[2][4].

Citations:
[1] https://www.webmd.com/diet/foods-high-in-purines
[2] https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gout-diet/art-20048524
[3] https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=ty2036&lang=en-ca
[4] https://my.clevelandclinic.org/health/treatments/22548-gout-low-purine-diet
[5] https://www.healthline.com/health/tips-for-following-low-purine-diet

The essence of the potential tie between Gout and PD is captured above in the statement “Staying hydrated is also important, as water helps flush out uric acid[5]. ” As anyone on PD has been instructed, we are on a strict restriction about intact of fluids, often limited to no more than on the order of 32 oz per day. I have been steadily working outside in the North Texas heat where it is often in the nineties or even over 100 with high humidity. As a result, I have been known to break a sweat every so often. Perhaps I am not ingesting enough fluids to keep up with the environment I’m working in, dialysis aside.

In the short term, I’m going to attempt to injest slightly more fluid and see if the sore toes go away. We’ll see.

US Navy SEAL sayings applied to Peritoneal Dialysis patients

As a retired US Navy officer who tangentially served on the same planet as SEALs, I am interested in what makes them tick. As a group, they endure and persevere through much pain and suffering in pursuit of their missions, somewhat like what those of us on PD face every day. In the next paragraph I’ve listed some of the sayings accredited to the SEAL community, and following that apply one to PD patients.

“The only easy day was yesterday.”
“Adapt, Improvise, Overcome.”
“Pain is just weakness leaving the body.”
“Slow is smooth, smooth is fast.”
“Be humble, be hungry, and always be the hardest worker in the room.”
“Get comfortable being uncomfortable.”
“The only person you have to be better than is the person you were yesterday.”
“Under pressure, you don’t rise to the occasion, you sink to the level of your training.”
“SEAL training is not for the faint of heart.”
“The only way is through.”

Today I’ve chosen the sixth SEAL saying to apply to PD patients. Here’s how the Navy SEAL saying “Get comfortable being uncomfortable” could be applied to peritoneal dialysis patients:

Adopting a “get comfortable being uncomfortable” attitude can help peritoneal dialysis patients persevere through challenges, adapt to changes, and maintain a positive outlook on their treatment. This mindset can be empowering and improve their overall quality of life.

Peritoneal dialysis can be an uncomfortable process, as it involves inserting a catheter into the abdomen and performing dialysis exchanges several times per day. This can be physically and psychologically challenging.

However, patients need to get comfortable with this discomfort to successfully manage their condition. The more they can embrace and adapt to the uncomfortable aspects of peritoneal dialysis, the more smoothly the process will go.

Just as Navy SEALs must train themselves to operate effectively in uncomfortable and stressful situations, peritoneal dialysis patients need to mentally and physically prepare themselves to handle the daily discomfort of the dialysis process.

Over time, with practice and a mindset of embracing the discomfort, it can become the “new normal” for peritoneal dialysis patients. What was once an unpleasant experience can become a routine part of their healthcare regimen.

Speaking of routines, my weight has edged upwards to 145.2. So starting last night and for the next couple of nights, I will be using a mixture of 1.5 and 2.5% solutions for my evening dialysis. This should bring my weight back down to the 140-1 range, where we will fall back to only 1.5% solution and start the game all over again.

FTC Going After Our PD Provider(s)

According to a recent article in Politico, the FTC is going after Fresenius and Da Vita for their business practices. I’ve condensed the article to its essence in the following paragraph and provided a link to the original article at the end. Interesting reading.

The Federal Trade Commission is investigating the two largest dialysis providers, DaVita and Fresenius Medical Care, over allegations that they illegally hinder smaller competitors. The probe focuses on how the companies make it difficult for physicians working in their clinics to leave for rivals and start new businesses, through the use of non-compete agreements. The investigation examines the business models of the two companies, which control at least 70% of the U.S. dialysis market. The FTC’s action is part of the Biden administration’s efforts to curb corporate concentration across the economy. The companies say they are cooperating with the investigation and are confident it will show they have enhanced competition. The non-compete agreements under scrutiny concern nephrologists, and specialists in treating kidney disease, and restrict them from serving as medical directors in competing settings, including home dialysis, which is becoming more profitable. Home dialysis access is improving, but slowly, and the non-compete clauses can limit patient choice and treatment options.

Link to original article:

No News Is Good News

That’s the way it has been with me and PD the last several days. I have an appointment with my dialysis team come Friday, and hopefully, the saying will still hold after that. Have you ever wondered where the title saying comes from? Read on:

The origin of the phrase “No news is good news” can be traced back to the 17th century. Here are the key points about its origin:

  1. The earliest recorded use of this exact expression in English is attributed to James Howell in 1640. He wrote, “I am of the Italians’ mind that said, ‘Nulla nuova, buona nuova’ (no news, good news)”[1].
  2. However, a similar sentiment was expressed even earlier by King James I of England (who was also James VI of Scotland). He wrote, “No News is better than evil news” some years before Howell’s usage[1].
  3. The phrase is believed to have been coined by King James I during the 17th century. He reportedly said, “No new is is bettir than evill newis” (in modern English: “No news is better than evil news”)[2].
  4. The idiom has been referenced in several published works throughout the years, including James Howell’s “Familiar Letters” and Stuart and Doris Flexner’s book “Wise Words and Wives’ Tales: The Origins, Meanings, and Time-Honored Wisdom of Proverbs and Folk Sayings Olde and New”[2].

The longevity of this phrase demonstrates its enduring relevance in human communication. It reflects the common belief that if there’s no news about a situation, it’s likely that nothing bad has happened, which is generally considered a good thing[2].

Citations:
[1] https://www.bookbrowse.com/expressions/detail/index.cfm/expression_number/325/no-news-is-good-news
[2] https://grammarist.com/idiom/no-news-is-good-news/
[3] https://www.merriam-webster.com/dictionary/no%20news%20is%20good%20news
[4] https://dictionary.cambridge.org/us/dictionary/english/no-news-is-good-news
[5] https://www.theidioms.com/no-news-is-good-news/

DEFINITIVE Fresenius Drug Listing

Almost by osmosis, I have learned that Fresenius has a list of drugs that are provided to peritoneal dialysis patients under the coverage of at least Medicare if not other forms of insurance. This list has been alluded to by my dialysis nurse and dietician from time to time as a sideline or something not being on the list. That leads me to surmise just what is on this list. This blog’s purpose is to share this info with readers.

Fresenius Medical Care provides several medications and vitamins for peritoneal dialysis patients as part of their treatment regimen:

  1. Blood pressure medications to control hypertension in dialysis patients[1].
  2. Erythropoiesis-stimulating agents (ESAs) like Epogen, Aranesp, or Mircera treat anemia by stimulating red blood cell production[1].
  3. Iron supplements, given intravenously or orally, enhance hemoglobin production and treat anemia[1].
  4. Phosphate binders reduce phosphorus absorption from food and prevent its buildup in the body[1].
  5. Renal (kidney) vitamins replace nutrients lost during dialysis, including vitamins B1, B2, B6, B12, folic acid, niacin, pantothenic acid, biotin, and vitamin C[1].
  6. Nutritional vitamin D to correct deficiencies common in kidney failure[1].
  7. Medications like Korsuva or Gabapentin to relieve itching (pruritus) are experienced by some dialysis patients[1].
  8. Heparin to prevent blood clots during treatment[1].
  9. Stool softeners to relieve constipation that can occur due to fluid restrictions[1].
  10. Topical creams and antihistamines for itching and dry skin[1].

Fresenius emphasizes the importance of regular medication reviews with the care team to ensure patients receive appropriate medications and dosages based on their individual needs and blood test results[1].

Citations:
[1] https://www.freseniuskidneycare.com/treatment/medications
[2] https://www.freseniusmedicalcare.com/en/peritoneal-dialysis-overview
[3] https://fmcna.com/content/dam/fmcna/live/support/documents/delflex/89-905%20-70%20-%20PATIENT%20PACKAGE%20INSERT,%20DELFLEX%20APD.pdf
[4] https://www.freseniusmedicalcare.com/en/peritoneal-dialysis-fluids
[5] https://www.reuters.com/business/healthcare-pharmaceuticals/fresenius-taps-pre-dialysis-kidney-care-drugs-promise-treatment-change-2022-10-05/

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