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.
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.
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.
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.
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
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.
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.
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).
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.
Summary Table: Survival Estimates for Elderly Peritoneal Dialysis Patients
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.
Merits of a Companion Dog for a Veteran on 100% Disability (Including Peritoneal Dialysis and Heart Conditions)
Note: the picture above is of me and my companion, Golden Retriever, Dickens. Bottom picture is of Dickens in back backyard with his horse ball. My caregiver/wife tends to all of Dickens’ needs. She feeds him, picks up his waste, sees that he gets exercised, takes him to the vet and groomer – EVERYTHING. Without her, I would be unable to have a companion dog. The following provides background on how important and central such animals are to disabled vets such as myself.
For veterans with significant disabilities, such as those requiring peritoneal dialysis and managing heart conditions (me), a companion dog can offer a range of physical, emotional, and practical benefits. These advantages are especially relevant within the context of the VA’s Caregiver Support Program.
Physical and Health Benefits
Improved Physical Activity: Studies in VA populations show that having a companion dog increases daily steps, time spent in moderate activity, and overall physical function. A companion dog can be an effective alternative for veterans not inclined to participate in gym-based exercise, leading to improved endurance, strength, and even weight loss for those with higher BMI81.
Heart Health: Dog ownership is associated with reduced stress, lower blood pressure, and decreased heart rate. Interacting with a dog can trigger the release of oxytocin (“the love hormone”), which helps reduce anxiety and promotes cardiovascular health—an important consideration for veterans with heart conditions61.
Routine and Motivation: The responsibility of caring for a dog can help establish daily routines, which is beneficial for those managing complex medical regimens like peritoneal dialysis5.
Emotional and Psychological Benefits
Reduced Depression and Anxiety: Companion dogs provide emotional support, reduce feelings of loneliness, and help manage depression and anxiety, which are common among dialysis patients and veterans with chronic illness547.
Social Support and Engagement: Dogs act as social catalysts, encouraging interaction with others and reducing isolation. Studies show that veterans with companion dogs report increased participation in social activities and improved quality of life815.
Therapy for Dialysis Patients: Research specifically on dialysis patients demonstrates that therapy dogs can reduce pain and depression, improve mood, and enhance treatment adherence—a critical factor in long-term health outcomes45.
Practical and Caregiver Program Considerations
Caregiver Support Synergy: The VA Caregiver Support Program is designed to assist caregivers of veterans with daily living needs, offering stipends, training, health care, mental health support, and respite care3. A companion dog can complement these supports by:
Providing additional emotional stability for both the veteran and caregiver.
Encouraging physical activity and engagement can reduce caregiver burden.
Enhancing the home environment, making caregiving more rewarding and less stressful.
Eligibility and Support: While the VA does not provide companion dogs directly, it does offer veterinary insurance for service dogs prescribed for substantial mobility, visual, or hearing impairments9. For a companion dog (not a service dog), the primary benefits are emotional and physical rather than task-based assistance, but the positive impact on daily living and well-being is well documented815.
Special Considerations for Your Medical Profile
Peritoneal Dialysis: Animal companionship can help manage the emotional and physical challenges of dialysis, but hygiene is critical. It is essential to maintain a clean environment to prevent infection at dialysis access sites. With proper precautions, the benefits outweigh the risks.
Heart Conditions: The stress-reducing and activity-promoting effects of dog ownership are particularly advantageous for heart health, provided that physical activity is tailored to your capabilities and medical advice61.
Summary Table: Benefits of a Companion Dog for Veterans on 100% Disability
Benefit Category
Companion Dog Impact
Physical Health
Better adherence to treatment, stress relief, and motivation for self-care
Emotional Well-being
Reduced depression/anxiety, less loneliness, improved mood
Social Engagement
More social activity, reduced isolation, strengthened support network
Caregiver Program Synergy
Eases caregiver burden, complements VA support services, improves quality of life
Dialysis/Heart Condition
Eases caregiver burden, complements VA support services, and improves quality of life
Conclusion
A companion dog can significantly enhance the quality of life for veterans with complex medical needs, including those on peritoneal dialysis and with heart conditions. The benefits—spanning physical, emotional, and social domains—align well with the goals of the VA’s Caregiver Support Program, which supports both the veteran and their caregiver in daily living and overall well-being83456.
This is the third in a series of blogs documenting my conditions in which and for which my wife Linda, acting as my Caregiver, aids and abets my ability to soldier on. In the first blog, I discussed dialysis-related tasks, cardio yesterday, and the situation with my legs today.
The VA has assigned me the following disability ratings for “extremity diabetic neuropathy “in my legs: upper right 40%, lower right 20%, upper left 30%, and lower right 20%. Given my VA ratings for diabetic neuropathy—40% for right upper extremity, 30% for left upper, 20% for right lower, and 20% for left lower—the actual combined VA disability rating is 73%, which in and of itself exceeds the Caregiver Support requirement of at least 70%. For clarification, just what is “extremity diabetic neuropathy?”
Extremity diabetic neuropathy is nerve damage caused by diabetes that most often affects the legs, feet, hands, and arms. High blood sugar over time injures nerves, leading to symptoms such as pain, numbness, tingling, weakness, and sometimes loss of coordination or muscle function in the affected limbs145. In severe cases, neuropathy can cause significant disability, increase the risk of falls, and make everyday tasks, like walking, driving, or using your hands, difficult or unsafe. I am experiencing most of these traits – falling, getting up from a chair after sitting down, and legs going to sleep, ditto driving, etc.
Relation to the VA Caregiver Program
For veterans, extremity diabetic neuropathy is often recognized as a service-connected disability, especially if linked to exposure to Agent Orange or as a secondary condition to diabetes. Both of these apply to me, and I have been so rated.
The VA’s Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides support to veterans who need in-person personal care due to serious service-connected conditions. Neuropathy qualifies if:
It causes an inability to perform activities of daily living (like bathing, dressing, or moving safely). Again, two of these apply to me.
It creates a need for supervision or protection due to neurological impairment (such as loss of sensation in the feet, leading to falls or danger while driving). These conditions apply directly to my situation.
The combined VA disability rating is 70% or higher, which I qualify for in spades..
If neuropathy limits your mobility, safety, or independence, which it does, then –
My situation—having significant diabetic neuropathy in all four extremities, with symptoms such as my right foot “going to sleep” while sitting or driving—directly relates to the eligibility and assessment process for the VA’s Program of Comprehensive Assistance for Family Caregivers (PCAFC). Here’s how my leg and foot issues factor into our application and the program:
How My Neuropathy Affects Eligibility
Combined Disability Rating: Your ratings (40% right upper, 30% left upper, 20% right lower, 20% left lower) likely result in a combined VA disability rating of 70% or higher, which is a threshold for PCAFC eligibility34.
Need for Personal Care Services: The program requires that the veteran needs in-person personal care for at least six months due to:
An inability to perform activities of daily living (ADLs), or
A need for supervision, protection, or instruction due to neurological or other impairment. I indeed do.
How Your Symptoms Relate to “Need for Care”
Safety and Supervision: The numbness and loss of sensation in my right foot, especially when driving, create a significant safety risk. This kind of impairment means I may need supervision or assistance to prevent injury to myself or others, particularly during activities like driving or transferring from sitting to standing.
Mobility and ADLs: Neuropathy can interfere with walking, standing, balance, and transferring, as well as with tasks like bathing, dressing, and toileting if you have difficulty feeling your feet or legs. If your spouse needs to help you move safely, prevent falls, or assist with these tasks, this supports your case for needing personal care services. Again, this applies to my situation.
Instrumental Activities of Daily Living (IADLs): Your spouse may also need to take on household tasks, manage medications, and ensure you are safe from hazards due to my impaired sensation and mobility. As a caregiver, my wife has assumed the duties of ensuring I’m correct in all aspects of medications.
In summary, I meet, no! exceed, the VA’s requirements for Cargiver Support based just on what’s going on with my legs. I have an appointment with my cardiologist in July, the soonest appointment I could get, to discuss my leg situation. In the interim, we have purchased a foot electronic device that provides programmed and adjustable shocks to my feet in an attempt to treat my extremity diabetic neuropathy.
This is the second blog in our effort to prepare for whatever the VA may ask and/or require to support our application for Caretaker Support. In yesterday’s blog, I laid out our case for the Dialysis Bucket. Today, we will address the Heart/Cardio Bucket. But first, some news:
I ascertained yesterday that while we were notified of an appointment this coming Friday, we were not informed of the location. I called the Caretaker national support line and was told they would check in with the support responsible for the area in which we live. When I didn’t hear anything in a reasonable amount of time, I did a Google and called the Texas support line and was informed the text was for an audiology appointment, which has since been rescheduled by the provider, and no appointment had yet been made regarding our caretaker request. So we are ahead of the game at this point. In this regard, I have also started a daily log of all the activities my wife engages in to provide me direct caretage support.
Regarding my heart. I am currently receiving 60% VA disability as a result of a triple bypass in 2015, the need for which is directly tied to being a diabetic, which in turn is directly related to exposure to Agent Orange in Vietnam. The current status of my heart, which was ascertained in February 2025, is that all is not as it should be on the backside, but due to my age and condition, nothing will be done about it. This condition manifests itself in several ways. I can not walk for any distance without becoming short of breath. My blood pressure is whacked; at times, it runs in the 150/80 range, low in the 100/55 range. Same with my pulse. At times, it is in the 80s, while at others in the 40s and 50s. Quite often, as a result, I just feel like crap.
What does my caregiver have to do with this? On numerous occasions, I have fainted just out of the blue. I can feel it coming on and do my best to gracefully go down if I’m outside, as I have been on at least three occasions or head for a couch or chair if inside. The EMTs have been called as a result of such behavior. My wife, as a caregiver, is sensitive to signals that I may be having an episode and ensures that I am cared for. In addition, she has assumed many of the household chores I normally took care of, such as taking out the weekly trash, working in the yard, many functions having to do with care and maintance of my dialysis equipment, sheduling support workers for home repairs, and other tasks involved in running a household.
Her caregiver support is essential and central to my continued living at home, also due to my compromised conditions, including my cardio deterioration
Yesterday’s blog outlined the three major areas my wife, as a caregiver, supports my health and well-being. In this blog, I will expand on the first major area, dialysis. Recall, this is preparation for whatever the VA asks of us in support of our application for the Caregiver Program.
Here is a comprehensive listing of the ways my spouse assists me with my peritoneal dialysis routine at home:
Assistance with Treatment Tasks
Setting up the Dialysis Machine: Connecting solution bags, setting machine parameters, ensuring proper operation, and troubleshooting minor issues. This is especially critical during illness on my part when I cannot operate the Cycler. (See pic 1 below)
Preparing the Treatment Space: Clearing and organizing a clean, pet-free area, arranging furniture for comfort and accessibility, and ensuring adequate lighting
Organizing Supplies: Ordering, receiving, unpacking (without breaking sterile seals), and storing dialysis supplies in an organized, accessible manner (See pic 2 below)
Maintaining Cleanliness: Cleaning the treatment area, ensuring all surfaces and hands are disinfected, and helping with sterile techniques to minimize infection risk (See pic 3 below)
During Dialysis Sessions
Assisting with Exchanges: Helping connect and disconnect tubing, monitoring for leaks, and ensuring all steps are performed in the correct order
Monitoring for Complications: Watching for signs of infection (redness, swelling, fever), leaks, or equipment malfunction, and knowing when to seek medical help. Provide catheter area oversight and care.
Timekeeping: Keeping track of treatment schedules, ensuring exchanges happen on time, and making sure no treatments are missed
Health and Lifestyle Support
Fluid Balance Monitoring: Measuring and recording input and output, tracking weight, and helping adjust fluid intake as directed by our care team.
Meal Preparation: Shopping for groceries, preparing kidney-friendly meals, and encouraging adherence to dietary guidelines. Liaise with the team dietitian.
Medication Management: Assist in prescriptions, organizing medications, and reminding me to take them as prescribed.
Exercise and Activity: Encouraging and assisting with appropriate physical activity as recommended by my dialysis and healthcare team
Logistics and Transportation
Errands and Appointments: Driving me to in-center checkups, lab visits, or other medical appointments, and running errands as needed. See “legs” blog Thursday for the need for this.
Emotional and Social Support
Providing Encouragement: Offering emotional support, helping me cope with the challenges of dialysis, and maintaining open communication. 48% overall of dialysis patients are depressive. 98.5% of PD patients display depressive symptoms.
Part of this support is the care and feeding of our Golden Retriever, who acts as an emotional support dog for me in all regards, not just dialysis. Without the support of my spouse, I could not keep and maintain my support golden.
Advocacy: Communicating with our healthcare team, asking questions, and advocating for our needs or preferences.
Emergency Preparedness
Recognizing Emergencies: Knowing when to call for medical help (e.g., signs of peritonitis, severe pain, or equipment failure)
Backup Planning: Being prepared for power outages or supply shortages, and knowing how to handle unexpected situations. This is especially critical in North Texas due to tornado activity being common.
Summary: My spouse’s role as my caregiver in peritoneal dialysis is multifaceted, involving hands-on treatment tasks, infection prevention, scheduling, health management, logistical support, and emotional care. Her involvement is crucial not only for the technical aspects of my dialysis but also for maintaining my overall well-being and quality of life. Without her, I could not and would not be able to soldier on.
