Yesterday Michelle from KidneyLink conducted her interface with my wife and me for about an hour. It was productive time spent and we plan on continuing with the annual visits in the future. She went over in detail all my meds and found two that were not on my medication list. One was D3 an OTC I’m taking on the advice of my GP and the consent of my Nepro; the other was a prescription cream that I use for dry skin mainly as a result of diabetes. The bottom line of the visit is that she found me, and us by association, the “us” including my wife as my caregiver, to be at the top of the game-so to speak. She said she had many 55-year-old patients in much worse shape than I am. In particular, she commented very positively about my weight and blood pressure.
If your dialysis provider has something like KidneyLInk, I suggest you consider engaging with them. I found the video below which explains better the thrust of this service.
I have been steadily commenting on the yard work my wife and I are engaged in. To strike home what is involved, I made the video below so you can see for yourself. For those on peritoneal dialysis, YOU CAN still accomplish things if you set your mind to it. At 85, I’m still truckin’ in the extreme heat of North Texas.
I have a somewhat busy medical week ahead plus plans to continue working on our flower beds. Tuesday I start an Adequacy Test in preparation for labs Wednesday. Also Tuesday a rep from Kidney Link is scheduled to visit our home and conduct an overall, 10,000-foot appraisal of my overall medical care. I’m a little bit dubious of the efficacy of such an audit but we will see.
Wednesday we are scheduled for a supply delivery from Fresenius. I will only have one day (one box) of 1.5% six liters left which is running it close. Also have the labs and have to lug in the night before fluids which at 12,800 mL are heavy. The same day my wife has her first appointment with my GP as a concierge patient. She kept running into having to wait hours for a given appointment and was not able to make timely appointments otherwise. With the concierge doctor, while it costs extra, we get appointments mostly on the same day, with minimal wait times, like 5 minutes. I have the doctor’s private cell phone number and email for prompt communication.
This month I made my supply order online using the PatientHub App just like many many months in the past. Everything went as expected. About a week later, I received an email from Fresenius telling me to submit my supply order. I checked my PatientHub App and it showed my order pending. I then called the Fresenius Order desk to inquire what my order status was. After a ten-minute hold, I was informed that indeed my order had been placed. I then inquired as to what the problem was and was informed that a software update has glitches in it which they are working on.
I took this opportunity to inquire why my previous order for cassettes wasn’t filled. I was told their records indicate none were ordered when in fact I DID order four boxes. I then inquired why Fresenius’ order software does not flag accounts such as mine where I have been putting in more or less consistent orders for fungibles such as cassettes for years. Their system must be written in COBOL and manned by COBOL-aged personnel because this basic system analysis was above the pay grade of the supply person who answers the phone at Fresenius. On top of this, I sensed no interest in improving their system either.
Buyer beware. The Fresenius “System” can bite you!
The 6/22-23, 2024 Review section of WSJ had an interview with Usher. In it, he provided his A to Z advice on life. His “R” was Read, learn, study about everything important in your life.” This struck home to me as deeply applying to those of us on dialysis. Our dialysis is very very important to our lives, so his admonishment fits. I turn to Poe with the following Prompt and results which are very insightful. Read on:
Prompt: Develop a 500-word blog post on the importance of continuing to “read, learn, and study everything important to your life” for peritoneal dialysis patients:
Title: The Lifelong Learning Mindset for Peritoneal Dialysis Patients
As a peritoneal dialysis patient, it’s easy to get stuck in a routine – performing your dialysis exchanges, taking your medications, and seeing your doctors for regular checkups. While maintaining that necessary routine is critical, it’s also important to adopt a mindset of lifelong learning. Continuing to read, learn, and study everything important to managing your health and quality of life can make a tremendous difference.
Peritoneal dialysis is a complex treatment, and there is always more to understand about how it works, how to optimize your dialysis regimen, and how to cope with the challenges it presents. By actively seeking out new information, you can become a true expert in your care. Read medical journals, attend educational seminars, and join online support communities to learn the latest developments in peritoneal dialysis research and best practices.
But it’s not just about the medical and technical aspects of dialysis. It’s also crucial to continuously educate yourself on the broader health, lifestyle, and psychosocial factors that impact your well-being as a dialysis patient. Learn about the role of nutrition, exercise, stress management, and mental health in managing your condition. Discover new hobbies, activities, and social connections that can enrich your life. Understand your legal rights and financial assistance options.
The more you know, the more empowered you’ll be to make informed decisions about your care, to advocate for yourself, and to achieve the best possible outcomes. Peritoneal dialysis patients who take a proactive, curious approach to learning tend to experience improved clinical results, greater treatment satisfaction, and a stronger sense of control over their health.
Of course, the learning process doesn’t stop once you’ve mastered the basics. As your needs and circumstances change over time, you’ll need to continually adapt and expand your knowledge. New dialysis technologies, medications, and clinical guidelines are always emerging. Your own physical, emotional, and social needs will evolve. Embrace this ongoing journey of discovery – it’s all part of being a savvy, engaged patient.
Remember, you are the expert on your own body and your own life. No one knows your unique situation better than you do. By nurturing your natural curiosity and committing to lifelong learning, you’ll be better equipped to navigate the ups and downs of peritoneal dialysis, collaborate effectively with your healthcare team, and optimize your health and quality of life. So keep reading, keep learning, and keep seeking out new information that can make a difference for you. Your continued growth and education is a true investment in your well-being.
Some of you may recall we have a golden retriever named Dickens. He just turned two and continues to be a constant companion and delight to my wife and I. I only wish that more people could experience the warm and loving feelings that go along with associating with a golden. With this thought in mind, I turned to Poe and inquired about the advantages to someone on peritoneal dialysis in having a golden. This is what Poe had to say about it; pretty interesting. BTW, the lead graphic is of Dickens in the morning where he hangs out while we are having breakfast.
For those living with kidney disease and undergoing peritoneal dialysis, the daily routine of managing this treatment can often feel isolating and draining. However, many patients have found a unexpected source of comfort, companionship, and even medical benefits through an unlikely companion – the golden retriever.
Golden retrievers are well-known for their gentle, affectionate temperament and their innate desire to please their human companions. These traits make them particularly well-suited as service and therapy dogs, and increasingly, peritoneal dialysis patients are discovering the advantages of inviting one of these furry friends into their homes.
Reduced Stress and Anxiety Undergoing dialysis can be an immensely stressful experience, both physically and emotionally. The constant monitoring of fluid levels, the disruption to daily routines, and the worry about long-term health can take a significant toll. Studies have shown that interacting with dogs can dramatically reduce stress and anxiety levels, thanks to the calming effect of petting a soft, furry animal and the release of feel-good hormones like oxytocin.
For peritoneal dialysis patients, having a golden retriever nearby during treatments can provide a welcome distraction and a source of comfort. The dog’s presence and unconditional love can help ease the mental strain of the dialysis process, allowing patients to feel more relaxed and focused on their well-being.
Improved Mobility and Exercise Peritoneal dialysis patients are often advised to maintain an active lifestyle to support their overall health. However, the fatigue and physical limitations associated with kidney disease can make it challenging to incorporate sufficient exercise into their daily routines.
This is where a golden retriever can make a big difference. These energetic pups require regular walks and playtime, which can encourage their owners to get up and move around more frequently. Even gentle strolls around the neighborhood or light games of fetch can translate to meaningful physical activity for dialysis patients, helping to build strength, improve cardiovascular health, and promote better sleep.
Enhanced Social Connections Kidney disease and dialysis can be incredibly isolating experiences, as patients may feel self-conscious about their condition or find it difficult to maintain social connections. Golden retrievers, with their friendly demeanor and eagerness to interact with people, can serve as social catalysts, helping their owners to meet new people and engage with their community.
Whether it’s striking up conversations with fellow dog owners at the park, joining a local pet-centric social group, or simply attracting the attention of passersby who want to give the dog some affection, a golden retriever can open up a world of new social opportunities for peritoneal dialysis patients. This increased sense of belonging and support can have a profoundly positive impact on mental health and overall well-being.
In conclusion, for peritoneal dialysis patients, a golden retriever can be far more than just a beloved pet – they can be a faithful companion, a therapeutic ally, and a gateway to a healthier, more connected life. By providing comfort, motivation, and social engagement, these furry friends can make a remarkable difference in the daily experiences of those managing kidney disease.
In the 1980 Star Wars, Yodi made the statement “Do or do not. There is no try.” In my approaching two years of Peritoneal Dialysis, I find this statement to be both true and inspiring. I turned to Poe for its insights in this area with the following results:
Here is how I would apply the Yoda quote “Do or do not. There is no try.” to patients on peritoneal dialysis:
For patients on peritoneal dialysis, this quote emphasizes the importance of diligence and commitment to their treatment regimen. Peritoneal dialysis requires patients to perform dialysis exchanges sometimes multiple times per day, every day, without fail. There is no “trying” to do the exchanges – the patient must simply do them, as prescribed by their nephrologist.
Patients cannot approach peritoneal dialysis with a half-hearted “I’ll try my best” mentality. They must fully commit to the process and “do” the exchanges as directed, without leaving room for “not doing” them. Missed or skipped exchanges can have serious health consequences for the patient.
The Yoda quote reminds peritoneal dialysis patients that dialysis is not optional – it is a necessary treatment that they must embrace and perform consistently. There is no in-between, no room for wavering. Patients must take ownership of their dialysis regimen and “do” it, without the possibility of “not doing” it.
This mindset of decisive action rather than indecision or half-measures is crucial for the success of peritoneal dialysis. Patients who embody Yoda’s words and fully commit to “doing” their dialysis exchanges will be more likely to experience positive outcomes and avoid complications from inadequate or missed treatments. The “do or do not” philosophy leaves no room for non-adherence.
Today at 0830 I am scheduled to meet with my PD team. My life as a PD patient has pretty much settled into a pattern with my biostats being almost constant and consistent, I feel good, and I’m getting lots of work done in the intense N. Texas heat. As I suggested in yesterday’s blog, my weight has more or less settled on 142.4 pounds, that being my reading for 10 of 15 past readings. My glucose readings are right in there also so what’s not to like?
My wife and I decided we are going to sod over the large former iris bed. See picture below. There is a stump of a redbud tree that we recently had cut down because it was dying that has to be taken out before we sod. I called the same company that recently trimmed our trees and they are coming out next Tuesday to grind the stump. Then I can finish grading the area in preparation for laying sod. One step at a time sweet Jesus.
I recently received a letter from the parent health organization of my kidney doctor. They suggest an annual Chronic Disease Management Visit for complete health screening is in order. They will assess my medical conditions, medicines, lab results, and other health information to support my care management for the rest of the year. They also suggest this will help with care coordination.
I talked about these meetings with my dialysis nurse, and some patients do it and others don’t. I am of the mind to schedule an appointment and see what happens. Who knows, it might be worthwhile.
Meanwhile, back home in North Texas, my wife and I finished weeding the former iris bed and have decided we are going to sod the area. This will result in one less flower bed to maintain. Yesterday I harvested our first crop of Roma tomatoes and one hot pepper. See lead photo.
Some observations about my biometrics for the last 13 days:
My weight has varied from a low of 141.6 to a high of 143,0 with the mode being 142.4 with 8 hits followed by 143.0 at 4 hits. So you can ascertain that I am staying in a very narrow pattern of weight. I am NOT on a diet, I more or less eat what I want within the constraints of being diabetic and on dialysis. I continue to work hard outside on our flower beds in which we are making progress.
During the same time frame, my blood pressure has ranged from a high of 123/74 to a low of 102/70. The actual systolic low has been 66. So once again, I am nailing it. AND I am taking NO blood pressure medications!
Lastly, my glucose has varied from a high of 109 to a low of 88 upon arising (fasting reading.) Once again, I’m nailing it. My GP and I have set the range we’d like to keep my glucose within of 50-150 and in general I’m there. On occasion, it may exceed 150, but soon drops to within range.
I have used only 1.5% solutions throughout the above timeframe for both my static fill and Cycler use. My microfiltration has ranged from 511 to 868 with an average more toward to high end.
I feel good, can work outside, and howl with the big dogs. What more could you ask for?
