I have gone eleven straight nights without ANY cycler alarms. This is a new record for me. I attribute the lack of alarms to my being more in tune with keeping kinks out of my catheter tubing. I am very aware of what’s going on with it, sometimes to the point that I am losing sleep over it. But that’s the price you pay. Kinks and alarms or no kinks and no alarms. Your choice.
I am writing this post on Wednesday for posting on Thursday. As we speak we are under a flood watch from 10 AM Wednesday until Thursday evening, and a tornado watch was just implemented. Our mowers are here doing our lawn ahead of the impending storm(s). There is a good side to all the rain we have been having this spring – our neighbor just dropped off a big bag of fresh Texas-grown sweet corn from his ranch toward Houston.
Ahead of the storms I did manage to get a little yard work in. I finished cleaning up the flower bed behind the master bedroom and installed new edging around it. See the first picture below. I also got started on installing manure/compost covering over the drip irrigation lines. See the second photo below. See, life can go on despite being on dialysis.
From time to time I have advocated for those of us on dialysis to indeed maintain some semblance of life as we knew it before. It is way too easy to become totally ensconced in dialysis in and of itself. I have attempted to maintain a life outside of dialysis requirements, and one of the aspects of this life is taking care of our large number of garden beds. Although the temps have been in the nineties, I have been steadily chipping away at several tasks we have laid out, one of which is the installation of a drip irrigation system for the flower and tomato plants I recently provided a video of.
In the video below, I show what is entailed in assembling such an automatic watering system, how it is laid out, the components, and the final product. Enjoy the video.
My wife and I try our best to keep our home including the grounds surrounding it in decent shape despite my dialysis. From time to time I have mentioned us having on the order of 15 garden beds which we are going through one-by-one to bring up to snuff. The video below shows some of them we have been working on. We have lots to go! BTW, the weather here in North Texas is now in the 90s most days so we have to pace ourselves accordingly . Enjoy the video.
I previously blogged about Metyos, the Paris, France-based company developing a wear-on device much like the Libre 3 to aid in detecting CKF earlier. In researching the company, I dropped down on their website and filled out a brief questionnaire indicating that I would participate in developing their new product. In a follow-up, I filled out a detailed history-based questionnaire, followed by an invitation to participate in a video conservation with a Metyos rep. That conservation took place this past Friday and was with the CEO/Cofounder, Alexandre Boulanger – lead picture.
The start of the conversation centered on how I learned of my impending kidney failure and the timeline of the failure. We then shifted to a picture of what they currently envision as their delivery system. It was at this point that I hit a snag. Unlike Abbott’s Libre 3 system for glucose readings which is a “one and done” every two weeks, Metyos’ system lasts eight days, and at that time the user must use a tool to replace a sensor in a receiver which remains attached to the user. In addition, at some interval not discussed, the user must wear a cuff-like device to charge the sensor’s battery. Ok so far?
Here’s the deal. The average age of those experiencing CKF tends to be upwards. Kidney disease can develop at any time, but those over the age of 60 are more likely than not to develop kidney disease. As people age, so do their kidneys. According to recent estimates from researchers at Johns Hopkins University, more than 50 percent of seniors over the age of 75 are believed to have kidney disease.
An herein lies the problem. Without insulting anyone, seniors in general are less apt to be comfortable with technology-based solutions. They tend to lose dexterity and just might find it difficult to manipulate the delicate touch required to change sensors. Not stated before, but like the Libre 3 system, the Metyos system uses a smartphone for analysis and display. Seniors in general shy away from smartphones and even if they have them, do not use the vast majority of their bells and whistles. For instance, my wife has three sisters all over 75 who don’t use the text function of their phones but you better believe they take pictures of grands and great-grands.
Lastly, I know for 100% certainty that FDA approval of the Abbott Libre 3 system to be covered by Medicare was held up until such time as Abbott developed a stand-alone reader for the Libre 3. When my first shipment of Libre 3 sensors was delivered from a third-party vendor, I received a reader with the shipment.
The Metyos system is set up to measure potassium (K) as a predictor of CKF. I was not familiar with this and quizzed Perplexity with the following results:
Potassium (K+) levels are an important predictor of adverse clinical outcomes in patients with chronic kidney disease (CKD). Several studies have demonstrated the following key points:
There is a U-shaped association between serum potassium levels and the risks of mortality and major adverse cardiac events (MACE) in CKD patients
. Both low (<4.0 mmol/L) and high (>5.0-5.5 mmol/L) potassium levels are associated with increased mortality and MACE risk compared to normal potassium levels (4.0-5.0 mmol/L). Hyperkalaemia (serum K+ >5.0-5.5 mmol/L) is associated with an increased risk of renin-angiotensin-aldosterone system inhibitor (RAASi) discontinuation in CKD patients, exhibiting a J-shaped relationship. RAASi medications are important for slowing CKD progression. Spending more time in a hyperkalaemic state (higher percentage of follow-up time with K+ ≥5.0, 5.5 or 6.0 mmol/L) is associated with increased risks of mortality and MACE across various cardiorenal disease populations, including CKD. High variability in serum potassium levels over time is also an independent predictor of increased MACE risk in CKD and other cardiorenal diseases, though not consistently associated with mortality risk. Other important predictors of adverse outcomes in CKD include older age, male sex, lower estimated glomerular filtration rate (eGFR), history of MACE, and RAASi usage
.
In summary, both high and low serum potassium levels, increased time spent in hyperkalemia, and high potassium variability are significant predictors of mortality, cardiovascular events, and RAASi discontinuation risk in CKD patients. Maintaining normokalemia is crucial for improving outcomes in this population.
I recently ran across an article on the Fresenius-sponsored app, Patient Hub. In the blurb, CKD and dry skin aka Pruritus were discussed. Further research indicates that as many as half of dialysis patients are blessed with aP. As such, it behooves those of us on PD to know more about this situation.
What is pruritus?
The general term pruritus means very itchy skin caused by a long-term disease, such as chronic kidney disease (CKD).
What is chronic kidney disease-associated pruritus (CKD-aP)?
CKD-aP is very itchy skin that is most common in patients with advanced CKD and end-stage kidney disease (ESKD), but it can also happen in the early stages of CKD. CKD-aP is also known as uremic pruritus because the build-up of toxins and wastes in damaged kidneys, known as uremia, has been associated with itching. Recent scientific evidence suggests uremia is not the exclusive cause of itching in CKD. As a result, the more appropriate name for this condition is CKD-aP.
CKD-aP can bother patients a lot and get in the way of daily life. Scratching to stop the itch can harm the skin, so finding the right treatments is very important. CKD-aP affects each person differently, so you need to work with your doctor and healthcare team to find what works best for you. Because CKD-aP is often ignored by both patients and their healthcare team, patients may not get the relief they need. This can lead to loss of sleep, shorter or missed dialysis sessions, fatigue, depression, and infections, among other problems.
On a personal level, I have experienced scaly or rough patches on my skin often on my head and legs. Since I am also a diabetic, this also factors in. Several years ago my dermatologist suggested I use a prescription ointment named Triamcinolone Acetonide (lead picture.) It has worked wonders for me dispatching sore spots and itching in short order.
There is not much new to report on the dialysis front. My weight was 145.2 this morning which rounds to 145 my ideal dry weight. For last night, I stayed with all 1.5% solution. I’m still trying to work more protein into all meals with some degree of success. My lawn crew is here and I’ve asked them to trim our Japanese box plants and Holly bushes. Our high school lad is still chipping away at going through our flower beds and weeding them. Earlier in the day I mowed and my wife started pulling mulch slightly back from all the zinnas we have planted, some sixty or so. She also worked with our lad to clean out debris from our gutters. She is a very hard worker and now runs circles around my dialysis bod. I’m so lucky to have been married to her for now OVER 62 years. Out.
As mentioned in yesterday’s blog, I did contact my dialysis team nurse, requested several boxes of 2.5% 2-liter static dialysis fluid, and picked up four boxes this morning. So now time will tell if I can control my weight using only the 2.5% static bags. Having said that, I would like to inform readers that for an 85-year-old 100% disabled Navy Vet, I am feeling exceptionally well at this point, working hard in the yard, and looking forward to living. Yes I have to pace myself, and yes I have to rest regularly, but things are getting done. I even laugh and smile occasionally. Life is good.
Yesterday exactly on time as advertised, our roofer and the USAA Insurance estimator showed up and investigated hail damage on on roof from the May 9 hail storm previously reported. The estimator found that our roof had sufficient damage from the storm to necessitate replacement, along with several of the gutter guards, and the door to our single garage also has dents in it. All of this info was sent back to USAA and I have been informed (via phoncon 5/14/2024) that our claim is in the mill and should be completed within a matter of day.
Lastly for today’s blog, after years and years of a certain cereal for breakfast, in response to constant nagging as a result of my labs reporting I need more protein, with the help of my wife, I’ve worked eggs and sausage into my breakfast routine. I’ve also included “smear case” for supper on occasion.
Just about everything in Texas is bigger, even HAIL. This past Friday around 1635 the skies opened up and here in Pecan Plantation, depending on where you live (we are about 4400 acres), a golf-ball to softball-sized hail storm passed through, lasting about 10 minutes. Boy did it rip things up. No sooner than the last hail had bounced off roofs, the roofers were coming out of the woodwork, harking their particular company for roof replacement work. We got ahead of the curve, notified our home insurance agent at USAA, have an adjuster scheduled for 10-11 AM today, and a reputable local roofing company on call to also work with the adjuster. The roofing company’s rep came out Saturday and inspected our roof and said it needed replacement. We have three skylights, and the storm took out all three. What you don’t know is that the roof is only three years old having been replaced previously due to hail damage. So here we go again.
Here is a link to a DFW article about the damage in Pecan Plantation. Below is a short video I shot during the hail storm. It is shot from our front porch.
My monthly PD Team meeting went as expected with no surprises. My doctor, Dr Turner, went over my labs, and my 17-day biometric log sheet, listened to my heart, looked at my catheter port, and pronounced me fit for another month of PD. There was no verbal input for my dietitian nor my social worker. My dry weight was slightly increased to 145 pounds from 143 pounds; I weighed in at 147 the morning of the meeting so we’re looking at a two-pound differential which seems to be achievable.
Here in North Texas, the weather has very much been in the news lately. Last weekend we received four inches of rain in less than 48 hours. Then the temperature starting going up. Yesterday it was 96 F here in Pecan Plantation but I still got some outside work accomplished. The temp tied a record for the date in the DFW area. More tomorrow. BTW, take care of your mothers this coming Sunday. I’m certain they all deserve it.
As scheduled, we received our monthly supply delivery from Fresenius. Our storage space is filled to the brim. The first photo below shows the “Ready Service Locker ” adjacent to the Liberty Cycler in our Master Bedroom. I currently use two bags of 6-liter fluid every night, so our locker holds ten nights’ worth of fluid.
The photo below is of a closet in a bedroom adjacent to the Master. In it, we store all of the bulk of fluids. To the right in the picture is our supply of 1.5% 6-liter bags; on the floor under the center shelving are the eight 2.5% 6-liter supplies I will be working in to help alleviate my weight gain; to the left are the 2-liter static bags I use in the early evening. As you can see, it makes up quite a bit but keep in mind I’m using one box of 6-liter every night so it goes down rather quickly.
