Tag: PD (Page 4 of 57)

This past Wednesday, I met with my GP, followed by a monthly meeting with my Dialysis Team. For the meeting with our GP, I had a specific agenda laid out as I did with the Dialysis Team, and took the lead. In both cases, one of the THREE items on our (I say our, because my wife, as my Caregiver, was very involved in setting up the agenda for the meetings) agenda was to review the top three drugs I was taking with the thought in mind to reduce or do away with them.

The drug handout we authored is embedded below:

I am pleased to report that after some discussion, I am no longer taking Januvia for diabetes with the caveat that we’re going to watch my glucose closely. My dialysis doctor stated that the majority of her insulin-taking patients take no oral diabetic medicine. Disposing of hydro… was straightforward. My GP strongly suggested halving my statin medication, while my dialysis doctor was Ok with dropping it. As a result, I’m now taking 1/2 of what I was before the meeting.

As a result of going into the meeting with a plan and our ducks in a row, we dropped two meds altogether and reduced the third by 50%, intending to drop it entirely in the future if my cholesterol and triglyceride readings do not go bananas. A win for all of us.

This past Friday, as scheduled, my wife and I had a one-hour and fifteen-minute phone interview with the social worker representing the VA’s Caregiver Program. I was first up. She interviewed what was obviously a script, and questions at first centered on how I feel, how a normal 24-hour day goes, what my caregiver did to aid and abet my daily activities, etc. It then turned to shades of mental health and suicidal thoughts, and included a question about whether we had a gun or guns in the home. She then talked with my wife, asking about 80% of the same type of questions.

After the interview, she informed us in some detail about what’s coming down the pike. Next up is a video interview by a nurse to go over in more detail health issues, then a panel of representatives from various domains in the VA, and lastly, possibly a home visit. After these activities, we will either be informed by this rep that we were accepted into the program, or receive a detailed letter explaining why we were not. If not, we can either appeal or, if so desired, reapply.

Up to now, the two interfaces with the VA leave the impression that they are pretty much sticking to their script and are not all that interested in anything off script. It’s as though my wife, as my caregiver, could have her finger in the dike of my life, and if this did not fit into a box on their form, they would be indifferent to it.

Yesterday, I had a candid conversation with the VA social worker who manages the VA’s caregiver program. She informed me that my personal blogs and anecdotal updates aren’t considered sufficient—they want input directly from my doctors. However, I believe my dialysis team is uniquely positioned to provide meaningful insights, given the daily data you receive from my cycler and your frequent interactions with me. You see me and my health trends more consistently than any other provider.

My Current Health: The Data and My Experience

To put it plainly, I feel like I’m on a downward slope—a negative first derivative, for those who appreciate a mathematical analogy. My physical abilities are declining: walking any distance has become a challenge, my knees are stiff, and I often have to pause after standing to regain feeling in my legs and feet. Even minimal exertion leaves me winded and needing to rest.

Dialysis now ties me to the cycler for over 10 hours each night. While I used to be someone who never napped, I now find myself dozing off in the afternoons without even trying. Fatigue is a constant companion.

Increasingly, I rely on Linda for support in daily life—meals, laundry, taking care of Dickens (our Golden Retriever), making decisions, and providing rides. This growing dependence is a direct result of my declining health.

(For those less familiar with calculus: the first derivative measures the rate of change. A negative value means things are getting worse. In this analogy, I am the function, and my health is trending downward.)

Looking Ahead: Questions for the Care Team

Linda will be joining me at our next team meeting with Dr. Turner on June 19. She has a growing list of important questions, including:

• What support services are available for dialysis patients in our area?
• Given the data, which suggests I have an average of 11.6 months to live, what is your perspective?
• Can we review my medications? It seems overdue.
• What has been your experience with caregiver requirements for patients like me?

I’m sure more concerns will arise before our meeting next week.

Why This Matters

I share this not just for myself, but for my care team. Your ongoing monitoring and feedback are vital. The numbers from my cycler and your observations are the most objective record of how I’m doing. My hope is that, together, we can address these changes proactively and ensure I have the best support possible.

Thank you for being my window into the medical side of this journey.

Here’s the thing nobody warns you about with dialysis: sometimes, your numbers change for reasons you can’t explain. Ever had a medical test result that left you scratching your head? That was me last week when my Kt/V—a number that tells me how well my peritoneal dialysis is working—dropped from a solid 2.12 to a puzzling 1.87. What gives?

I hadn’t changed anything in my routine, but I did notice my urine output was way down. Maybe I skipped my usual iced tea, or maybe it was just one of those days. Either way, I wanted answers.

To get to the bottom of this, I turned to Perplexity and asked:

“I am on peritoneal dialysis. Over the last quarter, my Kt/V dropped to 1.87 from 2.12 with no change in prescription. Explain how this could take place and the sensitivity of the measurement to the amount of urine collected.”

Based on the response, it seems likely that the decrease in urine output was the main culprit behind the lower Kt/V—just as we suspected. Sometimes, the simplest explanation is the right one!

Why Did My Kt/V Drop Despite No Change in Peritoneal Dialysis Prescription?

A drop in your Kt/V from 2.12 to 1.87 over the last quarter, even though your peritoneal dialysis prescription remained unchanged, can be explained by several factors, most notably, changes in your residual kidney function and the sensitivity of the Kt/V calculation to the amount of urine collected.

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Key Factors Affecting Kt/V in Peritoneal Dialysis

• Kt/V Components: Kt/V is a composite measure reflecting the clearance of urea by both the peritoneal membrane (“peritoneal Kt/V”) and your kidneys (“renal Kt/V”). The total Kt/V is the sum of these two components125.
• Residual Renal Function: Even small decreases in your remaining kidney function can significantly lower your total Kt/V, since the kidneys are very efficient at clearing urea and other solutes136.
• Urine Collection and Measurement: The calculation of renal Kt/V depends on accurate 24-hour urine collection. If less urine is collected (due to either actual decline in kidney function or incomplete collection), the measured renal clearance—and thus total Kt/V—will drop34.

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Sensitivity of Kt/V to Urine Volume

Urine Volume as a Proxy for Residual Renal Clearance:

• Studies show a strong positive correlation between 24-hour urine volume and residual renal clearance of urea, creatinine, and phosphorus in peritoneal dialysis patients3.
• A decrease in urine output, even if gradual, will lower the renal contribution to Kt/V, causing the total Kt/V to fall36.

Impact of Incomplete Urine Collection:

• If the 24-hour urine collection is incomplete (for example, if not all urine is saved or the collection period is shorter than 24 hours), the calculated renal clearance will be underestimated, leading to an artificially low Kt/V4.
• Day-to-day variability and errors in collection can cause significant fluctuations in Kt/V results, even if dialysis prescription and actual kidney function remain stable4.

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Other Potential Contributors to Kt/V Decline

• Changes in Body Weight or Total Body Water: Since Kt/V is normalized to total body water, significant changes in weight or hydration status can affect the calculation15.
• Laboratory Variability: Differences in laboratory measurements of urea in serum, dialysate, or urine can introduce error4.
• Peritoneal Membrane Changes: Over time, the peritoneal membrane’s transport characteristics can change, potentially affecting peritoneal clearance, though this is less likely if your prescription and technique have not changed1.

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Summary Table: Factors Affecting Kt/V

Factor	Effect on Kt/V	Sensitivity
Residual renal function (urine)	Large impact; small declines matter	Very sensitive
Urine collection accuracy	Under-collection lowers Kt/V	Very sensitive
Peritoneal prescription	Direct but unchanged in your scenario	Not a factor if unchanged
Body weight/total body water	Changes alter denominator in Kt/V	Moderately sensitive
Laboratory measurement error	Can cause fluctuations	Moderately sensitive

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Clinical Implications

• Interpretation: A modest drop in Kt/V is common and may not require immediate changes if you are otherwise doing well. Current guidelines emphasize a more holistic assessment of dialysis adequacy, not just Kt/V25.
• Action: If the drop is due to loss of residual kidney function, your care team may consider increasing your peritoneal dialysis dose or frequency. If due to urine collection error, repeating the collection with careful technique is warranted34.

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Takeaway

A drop in Kt/V on peritoneal dialysis without a prescription change is most commonly due to a decrease in urine output (loss of residual renal function) or errors in urine collection. The measurement is highly sensitive to the amount of urine collected, so even small changes or inaccuracies can significantly affect your Kt/V result346. Discuss these findings with your care team to ensure accurate measurements and appropriate adjustments if needed.

1. https://ispd.org/NAC/wp-content/uploads/2010/11/Peritoneal-Dialysis-Adequacy-Watnick-April-2011-Notes.pdf
2. https://pmc.ncbi.nlm.nih.gov/articles/PMC10125636/
3. https://pmc.ncbi.nlm.nih.gov/articles/PMC9637165/
4. https://academic.oup.com/ndt/article/14/12/2932/1818765
5. https://pmc.ncbi.nlm.nih.gov/articles/PMC8995486/
6. https://pmc.ncbi.nlm.nih.gov/articles/PMC9717664/
7. https://academic.oup.com/ckj/article/17/Supplement_1/i44/7687922
8. https://www.krcp-ksn.org/m/journal/view.php?number=6121
9. https://www.sciencedirect.com/science/article/pii/S008525381548024X
10. https://sites.duke.edu/nephfellow/files/2021/05/1-s2.0-S0085253815471170-main.pdf
11. https://freseniusmedicalcare.com/en-us/insights/field-notes/measuring-the-quality-of-peritoneal-dialysis/
12. https://www.kidneywi.org/wp-content/uploads/2020/11/AM-4-The-PD-Prescription.pdf
13. https://www.revistanefrologia.com/en-clinical-guideline-on-adequacy-prescription-articulo-S201325142400172X
14. https://www.davita.com/treatment-services/dialysis/on-dialysis/how-does-my-doctor-know-if-dialysis-is-working
15. https://www.kidneynews.org/view/journals/kidney-news/12/7/article-p16_10.xml
16. https://onlinelibrary.wiley.com/doi/full/10.1002/dat.20184
17. https://pmc.ncbi.nlm.nih.gov/articles/PMC8928818/
18. https://khi.asn-online.org/uploads/Weekly_KtV_PD.pdf

As a Krannert School of Management, Purdue University graduate, I find it useful to explore statistics surrounding situations such as I am currently in – an 86-year-old with several co-morbidities. In past blogs, I have discussed in detail how my current situation is being impacted and how my wife is stepping up to bat on my behalf. In this blog, we ask a simple question: “What is the probability I will live to 90, given my current age and co-morbidities.

Before AI became widely available, this might have taken days to reach a conclusion that would probably lack specifics. Not so in today’s world. I turned to Perplexity with the following Prompt and results.

Prompt:

Research my blog at www.feeser.me and my website at www.feeser.net, and given this background, estimate the probability of me living to 90 years old

Estimating the Probability of Living to Age 90 as an 86-Year-Old Diabetic on Peritoneal Dialysis

Background and Key Factors

You are 86 years old, have diabetes, and are on peritoneal dialysis. Both your blog and website suggest you are actively engaged, informed, and managing your health, but you live with significant comorbidities—factors that are central to survival estimates for elderly dialysis patients.

Survival Data for Elderly Peritoneal Dialysis Patients

General Survival Rates

• Mean Survival by Age Group:
  • Ages 85–89: Mean survival after dialysis initiation is about 11.6 months (just under 1 year).
  • Ages 90+: Mean survival drops to 8.4 months13.
• Five-Year Survival Rates:
  • For patients aged ≥75 on peritoneal dialysis, the 5-year survival rate is 17.6%2.
  • In other cohorts, 5-year survival for elderly (mean age ~70) is 22.8%5.
• Diabetes as a Risk Factor:
  • Diabetes is a significant independent predictor of increased mortality in elderly dialysis patients345.

Probability of Living to Age 90

• From Age 86 to 90 is a 4-Year Survival Window.
• For patients aged ≥75:
  • 3-year survival is about 37.5%2.
  • 5-year survival is about 17.6%2.
• For patients aged 85–89:
  • Mean survival is 11.6 months, suggesting that the majority do not survive beyond 2–3 years after starting dialysis at this age13.
• Diabetic Status:
  • Diabetes further reduces survival odds, though some studies show the difference between diabetic and non-diabetic elderly patients is not always statistically significant5.

Personalized Estimate

Given your age (86), diabetes, and peritoneal dialysis status:

• Estimated Probability of Reaching Age 90:
  • Range: 10%–20%
    • This is based on the 5-year survival rates for patients over 75 (17.6%–22.8%)25, but since you are already 86 and diabetic, your probability is likely at the lower end of this range.
    • The mean survival for those 85–89 is just under a year, and for 90+, less than a year13.
    • Diabetes and advanced age both independently lower survival.

Other Considerations

• Comorbidities and Functional Status:
  • Survival is better if you have fewer comorbidities, good nutritional status (e.g., higher albumin), and maintain some urine output135.
• Patient Engagement:
  • Active involvement in your care, as evidenced by your blog and website, may be associated with better outcomes, but this effect is modest compared to age and comorbidities.

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Summary Table: Survival Estimates for Elderly Peritoneal Dialysis Patients

Age Group	3-Year Survival	5-Year Survival	Mean Survival (months)	Notes
65–74	~68%	~51%	40–61	Non-diabetic slightly better
≥75	~37%	~17%	14–21	Diabetic status lowers survival
85–89	<20% (est.)	~10% (est.)	11.6	Your cohort1235

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Conclusion

Based on published survival data, your probability of living to age 90 as an 86-year-old diabetic on peritoneal dialysis is approximately 10%–20%. The lower end of this range is more likely given your age and diabetes12356. Individual outcomes can vary, and maintaining good nutritional status, avoiding infections, and managing comorbidities can help, but the overall prognosis is guarded.

In preparing for questions about our recent application for the VA’s Caregiver Program, I considered the weight of all the various components in successful treatment. Heretofore, it’s been about the bulk of the components that must be stored and replenished, not the weight that patients and/or their caregivers must bear. This blog clarifies this aspect from my viewpoint and experience.

My daily dialysis treatment requires me to use two six-liter bags of fluid for the cycler and a cassette. My evening static fill requires a two-liter bag of fluid for the pole with an attached drain bag. There are various other requirements that I will just lump into “other.”

I weighed one of the six-liter bags, and it weighed 13.6 pounds, so two each night is 27.2 pounds. They are shipped in a very heavy-duty cardboard box so let’s assume we’re looking at 30 pounds gross weight here that must be man-handled by the patient and/or caregiver. Assuming 30 days in the month, that’s 30 pounds times 30 days/month or 900 pounds per month.

Let’s look at the static two-liter bags now. If a 6-liter bag weighs 13.6 pounds, a 2-liter bag weighs 13.6/3, or 4.53 pounds. Now, 4.53 times 30 is 136 pounds. Now add this to the 900 for the six-liter bags, and we have 1036 pounds, well over 1/2 ton of “stuff” we must lug to and fro every month, to accomplish our dialysis routines.

Obviously, this does not include dealing with all the dunnage that results from unpacking all this stuff, which in and of itself, for us, is a heavy garbage bag each day, day in and day out. It never stops.

I posit that PD for us requires moving from the delivery truck to our home storage to where the dialysis fungibles are used, to use, to responsible disposable is more like 1500 pounds total. Now, we’re looking at at least 3/4 tons of effort required by someone to support home-based peritoneal dialysis.

Puts a different spin on things, doesn’t it? File under things they don’t tell you during training!

Relating the song “Stand by Me” to our application for the VA’s Caregiver Assistance Program (PCAFC) provides a powerful way to express the heart and purpose behind seeking this support.

The Message of “Stand by Me” and Caregiving

“Stand by Me” is fundamentally about love, support, strength, and courage in the face of adversity. The lyrics speak to the universal human need for someone to rely on—someone who will stand by our side when times are tough, when darkness falls, and when challenges seem insurmountable. This message resonates deeply in the context of caregiving, especially for veterans such as me.

“Whenever you’re in trouble, won’t you stand by me?”
— Stand by Me

As caregivers, you embody this promise. You are there for your loved one—standing by them through illness, recovery, and daily challenges. The song’s call for steadfast support mirrors the role of a caregiver: providing strength and reassurance, especially when the “night has come and the land is dark”1.

Connecting “Stand by Me” to the VA Caregiver Assistance Program

The VA’s Program of Comprehensive Assistance for Family Caregivers (PCAFC) is designed to support those who stand by veterans every day. The program recognizes that caregivers are essential partners in a veteran’s well-being, much like the unwavering companion described in the song235. This is how my wife, as my Caregiver, has, is and will continue to support me.

How the Program “Stands by” Caregivers and Veterans

• Financial Support: The monthly stipend helps caregivers continue to stand by their loved one, even when caregiving makes outside employment difficult35.
• Training and Education: Just as the song speaks to finding strength and courage together, the program equips caregivers with the skills and knowledge needed to provide the best care possible24.
• Mental Health Counseling: The emotional toll of caregiving can be significant. The program offers counseling, acknowledging the importance of mental resilience and the need for someone to “stand by” the caregiver as well235.
• Respite Care: Recognizing that everyone needs a break, the program offers respite care, allowing caregivers to recharge so they can continue their vital role35.
• Health Care Access: For those without other coverage, the program provides health insurance, ensuring caregivers are cared for too25.

Framing Your Application

When applying, you can express that, like the song “Stand by Me,” your commitment as a caregiver is rooted in love, loyalty, and the courage to face challenges together. The PCAFC is not just about practical benefits—it is about recognizing and supporting the profound bond between veterans and their caregivers. The program helps ensure that, no matter what comes, you can continue to stand by your loved one, just as the song promises1235.

In summary:
“Stand by Me” beautifully captures the spirit of caregiving—unwavering support through life’s darkest and brightest moments. The VA Caregiver Assistance Program is designed to stand by you, the caregiver, so you can continue to stand by your veteran, ensuring neither of you has to face the journey alone.

And that folks, is a summary of how the song “Stand by Me” applies in spades to the VA Caregiver program and the relationship I have with my wife as my Caregiver.