In yesterday’s blog I wrote about a new Paris-based company that is developing a Biodevice to aid in the detection of and early treatment of CKD, At the blog’s end, I indicated that I had volunteered to help in their development. I received this email back from their CEO:
“Hi Henry, Thank you very much for writing this article about us on your blog. We are developing our sensor as a medical device, heading towards clinical trials and FDA – it is quite a long way to go. We are currently doing a patient research survey, feel free to complete it/share it around you: https://xdx04m0xcfg.typeform.com/to/JDqnDEjM Best regards, Alexandre Boulanger _____________________ CEO – METYOS PC’Up – Institut Pierre-Gilles de Gennes 6 rue Jean Calvin 75005 Paris – France +33 6 19 98 41 06″
This is a serious effort to aid and support people who are or might experience CKF and merit all the support we can provide. For readers of this blog, whether you are experiencing CKF, or someone in your family (my wife is Stage 3 as is one of my sisters-in-law), or are a diabetic or family of diabetics (prone to CKF) PLEASE go to the link in the CEO’s email and fill out the short questionnaire.
I am going to request my Dialysis nurse at Fresenius do the same for her patients. Please help support this effort. Hank
Biowearables are much in the news as of late. The term “biowearables” was coined in the context of wearable health technology that provides personalized data to improve health outcomes. One such device is the Continuous Glucose Monitor by Abbott that I’m wearing called the Libre 3.
Until now, the scope of such devices has not included anything to do with Chronic Kidney Failure. I have always thought that the medical profession short-changed me in the early detection of and treatment of pre-dialysis. Their take was always CKF is on its downward slope (eGFR) and it’s going to keep on going regardless of medicine’s best effort to slow down or stop the decline. Nothing was suggested concerning diet or other life alterations about CKF. I was engaged in a spectator sport where the winner of the game, kidney failure, was preordained. So here we are today, on dialysis.
But there is perchance light at the end of the tunnel for those still on the slippery slope. As reported in TechCrunch (link) “Metyos’ goal is to build similar arm-worn (semi-invasive), real-time sensing tech, as is already established for diabetes management that can also detect chemical changes in fluids just under the skin, but that is focused on tracking biomarkers linked to chronic kidney conditions. It wants its biowearables to be prescribed by doctors as part of a remote treatment management package for patients — suggesting the approach could help doctors remotely spot warning signs linked to renal failure and hyperkalemia.
For patients, the goal is to empower them to become a more active participant in their own care — by offering recommendations (such as diet) and better understanding of CKD via the app. So the startup is taking a dual-sided approach that aims to bring data-driven insights to doctors and patients. If mobile tech has done anything, it’s given consumers an expectation of having access to information and being kept informed.
The startup says its biowearable will monitor ions and minerals that can build up in the bloodstream when kidney function is affected, sending data to an app on the user’s smartphone, via Bluetooth. From there the tech will be designed to relay user data to Metyos’ secure server in the cloud, where health professionals monitoring the patient’s condition can access it and remotely track disease progression. “
Metyos website is at this link. I have filled out their online form and offered research assistance.
For the past week or more my wife Linda has had various symptoms of COVID, “regular flu,” and a cold. Two at-home COVID tests ruled out this malady – sorta, the flu settled to a cold, and here we are. It took her over a week to make a doctor’s appointment, get in, and be treated with antibiotics, which appears to be working. How did this all affect me?
I had been trucking along doing fine – until yesterday. I woke up in the night with cold sweats and ended up on the potty with dry heaves. I had dry heaves once more, slight pain in my lower extremities, and generally felt run down. Profuse nose running of clear liquid. Ate breakfast, then a couple of hours later had dry heaves again. By evening I was back in battery. All my biometrics were good except blood pressure which Tuesday AM was 84/58 with a pulse of 102. I skipped my AM blood pressure med and my BP started back up in response.
In response to all of this, I kept in communication with my Dialysis Nurse and my wife reviewed all Fresenius-provided material on “What to do if….” While I’m not ready to jump over tall buildings – yet – it seems we’ve weathered yet another crisis in the making. Fresenius delivered my special order of 2 L manual fluid today to support my new dialysis prescription. Life living with dialysis goes on….
At every sign of a cold, our son insists that we take massive doses of Vitamin C as a natural combatant. While in theory espoused often by naturalist medicine advocates, those of us suffering from Chronic Kidney Failure (CKF) are severely restricted in what supplements we can take for just about anything. In my personal life, I run EVERYTHING by my GP and nephrologist before starting or stopping a regime. Regardless of your status, you should too!
I recently ran across an article regarding this subject in BestLife News(link). I took the liberty of running the article through CoPilot with a Prompt to reduce it to 200 words which are included below for your edification:
5 Supplements That Can Damage Your Kidneys, Doctors Say
Many people believe that natural supplements are safe, but that’s not always the case. HaVy Ngo-Hamilton, PharmD, warns that some supplements can harm your kidneys. While it’s impossible to memorize all risky supplements, here are five commonly associated with kidney problems:
Turmeric (Curcumin): Used for its anti-inflammatory properties, turmeric can have adverse effects on the kidneys.
Creatine: Often taken by athletes, creatine can strain the kidneys and lead to kidney damage.
Aloe Vera: Despite its popularity, aloe vera supplements may cause kidney issues.
Vitamin D: Excessive vitamin D can harm the kidneys, so be cautious with supplements.
Cranberry: Although beneficial for urinary health, cranberry supplements can be problematic for kidney function.
Remember to consult your doctor or pharmacist before starting any supplements to avoid potential risks.
Our son, who recently underwent quadruple heart bypass surgery, is having very bothersome trouble with elevated blood pressure during the night. His BP is fine when he goes to bed, but during the night he wakes up frequently to find his BP elevated to the point of being of concern. It is an established medical finding that increased BP or hypertension, is a comorbidity with cardiovascular and renal diseases and is thus of interest to readers of this blog.
I turned to the Doctor Sage bot in Poe with the following Prompt and results:
Prompt: What is the association, if any between sleep apnea and hypertension especially at night during sleep?
DoctorSage Poe: Sleep apnea and hypertension are closely associated with each other, especially during sleep. Here are the key points to consider:
Sleep apnea is a sleep disorder characterized by repeated pauses in breathing or shallow breaths during sleep. These pauses, called apneas, can last for a few seconds to a few minutes and occur multiple times throughout the night.
Hypertension, or high blood pressure, refers to the sustained elevation of blood pressure above normal levels. It is a known risk factor for various cardiovascular diseases.
There is a bidirectional relationship between sleep apnea and hypertension. This means that sleep apnea can contribute to the development and worsening of hypertension, while hypertension can also worsen sleep apnea.
Sleep apnea leads to intermittent hypoxia (low oxygen levels) and increased carbon dioxide levels in the blood, which can activate the sympathetic nervous system and increase blood pressure. The repeated episodes of apnea followed by sudden awakening cause surges in blood pressure during the night, leading to nocturnal hypertension.
Nocturnal hypertension refers to elevated blood pressure levels during sleep. It is particularly significant because it is an independent risk factor for cardiovascular events, such as stroke and heart attack, in patients with sleep apnea.
The increased sympathetic activity and elevated blood pressure during sleep can persist throughout the day, contributing to sustained hypertension even during wakefulness.
Additionally, sleep fragmentation caused by frequent awakenings during sleep apnea can result in poor sleep quality and daytime sleepiness, which can further contribute to the development and worsening of hypertension.
In summary, sleep apnea and hypertension are closely linked, with sleep apnea contributing to the development and worsening of hypertension, and hypertension exacerbating sleep apnea. The surges in blood pressure during sleep and the resultant nocturnal hypertension are particularly important in understanding this association. Early recognition and treatment of sleep apnea are crucial to managing hypertension and reducing the risk of cardiovascular complications.
Yesterday, 3/21/2024, a xenotransplantation was reported by Reuters here.
“A 62-year-man with end-stage renal disease has become the first human to receive a new kidney from a genetically modified pig, doctors from Massachusetts General Hospital in Boston announced on Thursday.
The four-hour surgery, performed on March 16, “marks a major milestone in the quest to provide more readily available organs to patients,” the hospital said in a statement.
The patient, Richard Slayman of Weymouth, Massachusetts, is recovering well and expected to be discharged soon, the hospital said.”
Let’s delve deeper into this subject. Here’s what Poe had to say about it:
Xenotransplantation refers to the transplantation of organs, tissues, or cells from one species to another, typically from animals to humans. The term “xeno” is derived from the Greek word “xenos,” which means “foreign” or “strange.” In the context of xenotransplantation, it signifies the transfer of biological material across different species.
Here are a few examples of xenotransplantation:
Pig-to-Human Organ Transplants: Pigs are often considered as potential donors for organs such as hearts, kidneys, and livers due to similarities in size and physiological function. Porcine organs can be genetically modified to reduce the risk of rejection in the human recipient.
Islet Cell Transplants: Islet cells, responsible for producing insulin in the pancreas, can be transplanted from pigs to humans as a potential treatment for diabetes. This approach aims to alleviate the need for insulin injections or continuous glucose monitoring.
Xenogeneic Skin Grafts: Temporary or permanent skin grafts from animals like pigs or genetically modified mice can be utilized for treating burn victims or patients with severe skin injuries.
It’s important to note that xenotransplantation is an evolving field with ongoing research and ethical considerations. The potential risks of immune rejection, transmission of zoonotic diseases, and ethical implications surrounding animal welfare and genetic modification are areas of active investigation and discussion.
The “engine” behind this reported Xenotransplantation is a company out of Cambridge, MA named eGenesis. Founded in 2015, it is currently a private company but I speculate it will be taken public in the near future. You can access a link to their web site here: https://egenesisbio.com/
Recently my Brother-In-Law Jerry Seager passed. He had been diagnosed with last-stage AML Leukemia that had progressed so far as to be not treatable. He was 84 years old and led a very full and productive life. Linda and I and scores of others will miss Jerry beyond what words can communicate. See this link for his story: https://app.bluebutterfly.com/memorial/v2/jerry-seager
Tuesday morning my weight ballooned to 158.0 pounds and I felt worse since going on PD. I had asked my dialysis nurse to read Tuesday’s blog about my weight going up (drastically) since going on the latest prescription which she did and talked to my nephrologist. As a result, I have a new dialysis prescription to try out. This one involves manually loading 2L of 2.5 around 6 PM. This load will be drained off by the initial drain cycle of the evening and be followed by four cycles of 2.7L each but no additional fill at the end.
Remember that every time my prescription changes, the requirements for what fluids in what amounts per bag change also. So now I need enough 2L manual bags for one per day and enough other inventory to cover four fills of 2.7L each. Since I normally only inventory manual 2l bags to conduct adequacy tests, I only have 3 boxes or 15 bags on hand. While I was in the clinic having my thumb drive reprogrammed for the new prescription, I called Fresenius Logistics and have an additional five boxes of the manual bags scheduled for delivery next Tuesday. I have found Fresenius very easy to work with in this regard.
Now I’m trying to decide if I need to do a manual drain to get rid of this excess fluid loading me down?
Recall that this past Thursday I met with my Dialysis Team. As a result of my latest PET indicating that my Transport flipped from High to Low, my prescription was altered. Part of this change was to leave one liter of fluid in my stomach after my daily treatment where it would be removed first upon hooking up for treatment in the evening.
After unhooking every morning, I now have three data points on my weight. My weight had run consistently at 146.8 or 147.8 for weeks and months. The last three readings are 150.0, 152.2, and 155.8. According to a Perplexity search, PD fluid typically weighs about 1 Kilogram per liter depending on the solution. So retaining a liter of fluid should raise my weight by about 2.2 pounds (one kilo). This would make my current weight to be about 150 lbs max (147.8 + 2.2 = 150). This would infer that my first weight is “in there” while the 152.2 and certainly the 155.8 are out in left field.
BTW, my closing screen on the Liberty Cycler, the machine that conducts the PD treatment, indicates clearly that 1007 mL of fluid constituted the last fill. Associated with the 155.8 weight was a negative microfiltration of 494 indicating that some fluid over the 1007 was left in after treatment but this would not explain the 155.8. Bottom line, I don’t have a clue what is going on. Standby! And I don’t see how I can do a StatDrain either. This morning my wt was 155.2 with positive microfiltration of over 800.
I met with my dialysis team yesterday as planned to go over my early March labs. As anticipated, a central point of discussion was what to do in response to the change in my transport function. The following was decided: Reduce the number of dwells to 4 from 5, increase dwell time to 2 hours from 1.5 hours, and add a one-liter dwell during the day. The daytime one liter will be accomplished by loading a liter into my stomach in the morning, where it will remain all day until I hook back up to the cycler at night where it will be first removed before any normal fill and dwells occur.
A downside to having a liter of dialysis fluid in your gut during the day is the possibility of some of it being reabsorbed back into the body. Since the fluid also contains a fair amount of sugar, I was told it MAY impact glucose control.
I was politely chided by my dietitian Rachel to up my protein intake which I will accomplish by attempting to consume more red meat and more protein bars.
First of April, we will run yet another adequacy test the output which will be an updated Kt/V which hopefully will move upward from the current 1.8 more towards 2.0, the ultimate minimum goal.
The lead picture is from Poe in response to the Prompt: “picture of Popeye pondering his new dialysis prescriptions’
