The most commented-on subject in PD-related forums for those new to the subject is how and where to store all of the supplies required for dialysis. My wife and I shared the same concern, and by lengthy research and discussion decided we needed a home to accommodate dialysis. This resulted in our purchasing a 2500 sq ft home with a layout that apriori seemed to fit. We also considered the proximity of access to DaVita (since left the Granbury area) and Fresenius and VA facilities. The video below is a spartan walkaround of our actual layout to help those in their decisions. Hank
Tag: Navy (Page 33 of 45)
I’m a happy camper. Last night no alarms again with the new Cycler! Pulled 1300mL on ultrafiltration. To those not familiar with dialysis, the amount of fluid that the cycler pulls out over what it puts in is called ultrafiltration and is the result of fluids you inputted prior to dialysis. 1.3 liter is a healthy amount to pull out. My weight this morning reflected the increased filtration coming in at 145 pounds of mean and lean maleness.
Another good thing happened yesterday: FedEx showed up and removed my old cycler for return. Yea on this!
Received a call from the doctor’s office that installed my catheter after a referral from my nephrologist to check out potential blockage in my catheter system. Supposed to call back later yesterday afternoon and did not so I’m hanging on this aspect. Always seems to be something hanging.
My wife and I have been planning our six-day trip back to visit her sisters in Indiana, a two-day each-way journey of about 1000 miles. We have decided to put the required bulk items for each dialysis in individual boxes to include: one 5000mL, one 3000mL, a cassette, and a stay.safe plug. In another “carry-on” will be all the other required safety and aseptic supplies required for dialysis. We will also load some drain bags in case the 20-foot drain line on the standard cassette won’t reach a drain in the motel, and an extension cord for power.
Speaking of power, I was browsing through the new cycler manual and saw the power requirements as being 480 watts at 100 volts. Using Watts=voltage times amps, we derive 480/100 = 4.8 amps max the cycler draws. Based on this and lots of other calculations, you would need five 200 Ah batteries which are large and expensive to run a cycler for up to 12 hours. Much better to consider a low-noise Honda 1000 generator instead. They can be converted to run on propane and with the appropriately-sized propane tank, should be capable of lasting an entire dialysis session.
Sunday night’s dialysis was different from any other. Around midnight, the cycler gave out an alarm notification sound and then shut itself off. Almost as to say “Sorry about that.” It was on the first drain cycle at about 1381mL accomplished. I noted this, rolled over and slept in until 0855 Monday morning. I have reported this to my Dialysis Nurse and she has sent in a referral for me to see the surgeon that installed my catheter, Dr. Tan in Forth Worth, TX.
In yesterday’s blog, I posted about my Dialysis Nurse suggesting I may be experiencing a phenomenon in peritoneal dialysis called “Omental Wrap.” This is new to me so I queried a new-to-me AI source called Poe (poe.com) with the following edification results:
Poe Prompt: What is an omental wrap as pertains to slow drainage in peritoneal dialysis patients?
The term “omental wrap” refers to a complication that can occur in peritoneal dialysis (PD) patients, leading to slow or inadequate drainage of dialysis fluid. To understand omental wrap, let’s first briefly review peritoneal dialysis.
Peritoneal dialysis is a renal replacement therapy that involves using the peritoneal membrane, a thin lining that covers the abdominal organs, as a natural filter for waste products and excess fluid in the body. During PD, a sterile dialysis solution is introduced into the peritoneal cavity through a catheter. The peritoneal membrane allows waste products and excess fluid to pass from the bloodstream into the dialysis solution. After a certain dwell time, the fluid is drained out, carrying the waste products with it.
In some cases, the omentum, which is a fold of fatty tissue attached to the stomach and covering the intestines, can wrap around the catheter or form adhesions in the peritoneal cavity. This can hinder the proper flow and drainage of dialysis fluid during the exchange process. The omental tissue can become entangled with the catheter or form scar tissue, creating a physical barrier that impedes the movement of fluid.
When omental wrap occurs, it can result in slower or incomplete drainage of dialysis fluid. This can lead to inadequate dialysis, as the waste products and excess fluid may not be effectively removed from the body. The symptoms may include abdominal pain, bloating, and reduced ultrafiltration (the removal of excess fluid).
An omental wrap is typically managed by adjusting the peritoneal dialysis technique or by performing surgical interventions. The specific approach depends on the severity of the omental wrap and the patient’s individual circumstances. In some cases, the catheter may need to be repositioned or replaced to improve fluid flow. Surgical procedures, such as omentectomy (removal of the omentum) or adhesiolysis (separation of scar tissue), may be required in more severe cases.
It’s important for PD patients experiencing slow drainage or other complications to consult with their healthcare team. They can assess the situation, perform necessary investigations, and recommend appropriate interventions to address omental wrap or other issues affecting peritoneal dialysis efficiency.
Poe Prompt: What are some common symptoms of omental wrap in peritoneal dialysis patients?
Omental wrap in peritoneal dialysis patients can present with various symptoms. Some common symptoms associated with omental wrap include:
Slow or inadequate drainage: Omental wrap can impede the proper flow and drainage of dialysis fluid during exchanges. This can result in slower or incomplete drainage, leading to longer dwell times and inadequate removal of waste products and excess fluid.
Abdominal pain or discomfort: Patients may experience abdominal pain, cramping, or discomfort. The pain can range from mild to severe and may be localized around the catheter exit site or diffuse throughout the abdomen.
Bloating and distension: Omental wrap can cause abdominal bloating and distension due to the accumulation of dialysis fluid in the peritoneal cavity. This can lead to a feeling of fullness and tightness in the abdomen.
Reduced ultrafiltration: Ultrafiltration refers to the removal of excess fluid during peritoneal dialysis. An omental wrap can interfere with fluid removal, causing reduced ultrafiltration. This can result in fluid retention, edema (swelling), and weight gain.
Catheter malfunction or poor dialysis efficiency: Omental wrap can affect the function of the catheter used for peritoneal dialysis. Patients may experience catheter-related issues such as kinking, clogging, or poor dialysis efficiency. These problems can further contribute to inadequate waste product clearance and fluid removal.
It’s important to note that these symptoms can also be associated with other complications or conditions in peritoneal dialysis patients. If you are experiencing any of these symptoms, it’s crucial to consult with your healthcare team for proper evaluation, diagnosis, and management. They will be able to assess your specific situation and recommend appropriate interventions to address the underlying cause.
Last Thursday at 1303 FedEx delivered a new/replacement cycler. The replacement is running software version 3.0.03 062; my old cycler was running 2.9.2 062 so we’re on a much newer software version.
So how’s it going so far? The first night, Thursday, no alarms. The second night Friday, slow drain alarms on the first and second drains happening at approximately 1281 and 800+ mL of the accomplished drain. In preparation for Saturday night, I rerouted my patient line so it goes straight across my stomach and to the cycler without any loops being taped to my stomach. No alarms.
I have informed my Dialysis Nurse of the status and inquired about switching to “Treatment Based” as the new manual suggests on page 60. This is still an open item. In order of action, we are going to keep watching alarms given only one night of no alarms with patient line rerouting. We are going to make sure I’m clear of any stool blockage. I may be referred to the doctor who installed my catheter to see if there are any other internal issues blocking the tip of the catheter called “Omental Wrap.” All of this may culminate in a laparoscopic procedure (keyhole surgery) where the surgeon enters my stomach and looks around to ascertain if all is in order.
In the middle of all of this, I was informed initially by Fresenius that the old cycler would be picked up by FedEx on Tuesday, 8/21/2023. Upon receipt of the new cycler, it DID NOT have return labels in the plastic envelope that it was supposed to. This necessitated a call to Fresenius where NOW the FedEx driver is supposed to pick up the old cycler Monday, 8/20/2023, and have a return label with him/her. Seems that Fresenius has a really hard time getting all their ducks in a line!
As I write Friday’s blog it is approaching noon on Thursday and no replacement cycler has arrived nor have we been contacted by anyone from Fresenius. However, I did manage to achieve other housekeeping chores.
We have been trying to move a brokerage account to our main Schwab account with difficulty. Lots of t’s to cross etc. This morning I journeyed to UPS to send a copy of the monthly statement from the account we desire to close to a Schwab rep to process.
The second gate was the delivery of our golf cart. We bought a refurbed 2019 Club Car to putt around Pecan Plantation. Upon testing on our dead-end street, it crapped out and was trailed back to the dealer. Troubleshooting found that a main electrical connection between the battery and generator had battery acid on it and the interior wire had corroded and opened. This prevented charging the battery and supplying power while the engine attempted to run. The wire was replaced as was the battery. We did another test run with good results.
Yesterday was the supply order date for me to order supplies from Fresenius which I did. We will be in Indiana on vacation on the scheduled delivery date at the end of September so I called support and worked with them for an alternative date. We came up with delivery the first week in October so that’s taken care of.
I also made a call to Fresenius customer service to inquire about cassettes with shorter hookup lines. I had previously read that you could order one with a 10-foot instead of a 20-foot catheter line. My thinking is maybe this will help alleviate the drain alarms I have been plagued with for almost a year. I was informed that the cassette with the 10-foot catheter line only comes with a 10-foot drain line which won’t work for me; I need a 20-foot drain line to reach our master bath shower drain. I was also informed that to receive such a cassette my “prescription” had to be altered by my Dialysis Nurse. I could not just order one on my own. The shorter cassettes do not show up in the Fresenius Patient Portal FYI.
In closing, nada concerning the new cycler delivery supposedly scheduled for today.
Called Fresenius “Tech Support” again Monday AM. Seems like my Cycler is going downhill. In the last seven days, I have experienced 13 alarms on the drain cycle. It seems to be developing a pattern of sorts where it drains 12-1400 mL of “distillate”, then hangs. The time on dialysis reflects this in that instead of 10 hours 30 +/- minutes, it jumps up to over eleven hours.
For the record, the support person, after asking expected questions like the cycler’s serial number and software version, was interested in where the system drains (straight into a shower drain), how long a run this is, had the drain line been modified, the data off the cassette (lot #, etc.), and “how long has this been going on? When I responded at least six months it got her attention and even more when I explained my dialysis team and I had exhausted all other possibilities other than the cycler itself and were in unanimous agreement I needed a new cycler.
I’m supposed to receive a phone call that a new unit is en route (haven’t) and receive it within 24 hours. Not holding my breath but praying!
One of the first phrases I learned in Vietnamese language school before going In-Country was một lần nữa, meaning one more time. It just kinda rolls off the tongue when speaking Vietnamese. In the military, you learn to do lots of things, One More Time. So it is with alarms on my company-issue Liberty Cycler.
Last Wednesday night on the first main drain cycle the cycler hung up and essentially at every “pump” drained only 1 or 2 mL of fluid instead of the normal 12 to 13 mL. I called “tech support” and after over half an hour on the phone, it was agreed that my case would be “escalated.” What this means, in reality, is that a faceless, clueless, and heartless representative of Fresenius would contact my clinic dialysis nurse and deny me cycler replacement. This is exactly what happened. The excuse was that I had not been faithfully calling tech support every time I received alarms and thus they could not justify replacement. Nothing was said nor has it ever been regarding just how many times something like alarms have to be reported before action is taken.
Along the way, Fresenius always comes back to everything which does not include their cycler as being at fault. This incident included questions as to whether my catheter was properly placed and operational/not blocked. Responding to the blocked aspect, the cycler always fills well, and recently I had a manual drain test conducted by my Fresenius team with no abnormalities detected.
So, in consort with my dialysis nurse, we scheduled a xray exam to look inside to see if anything is untoward in my stomach with my catheter system. The full report is below: I’m good so my strategy is to report every burp of the cycler’s drain problems until someone smells the coffee or I die from sleep deprivation.
Exam AR Acute Abdomen Series 08/10/2023
History: Poorly draining PD Catheter
Technique: 5 views of the lumbosacral spine
Comparison: None
Findings: There is moderate curvature of the lumbar spine with convex to the right. Moderate degenerative changes lower thoracic and lumbar spine.
No fractures of dislocation. Large amount of formed stool is seen within the right colon. Curvilinear tube overlying left lower quadrant of the abdomen. There is a larger bore catheter identified with the distal tip overlying the mid aspect of the lumbar spine at the L4 level on the AP view and overlying the area of the LS level on the lateral view.. CT may be more helpful.
Moderate degenerative changes lumbar spine. Mild to moderate degenerative changes of the hip joints bilaterally.
Moderate vascular calcifications of the abdominal aorta and iliac vessels.
Impression:
- There is mild to moderate curvature of the lumbar spine with mixed the right.
- 2. There is a curvilinear catheter seen overlying the left lower quadrant of the abdomen. There is a larger bore catheter is seen overlying the lower mid abdomen. CT may be more helpful for placement if no drainage..
- 3. There is a moderate to large amount of degenerative changes lumbar spine.
- 4. Significant amount of stool is seen within the right colon.
General Stanley McChrystal is credited with stating “Don’t follow my orders, follow the orders I would have given you if I were there and know what you know.” I only wish that Fresenius followed such a dictum with its “tech support.” My continuing frustration with Fresenius’ tech support is their total lack of empathy, understanding, and certainly action on my behalf as a result of continuous drain alarms from their Liberty Cycler, taking place over half the time.
Their position seems to be if you can get through a night of treatment, REGARDLESS OF THE CONSEQUENCES OF DOING SO, that’s good enough and they wipe their hands of any further responsibility, caring, or interest. Dealing with Fresenius “tech support” is worse than sticking your finger into a cloud; at least with a cloud, you may end up with a moist finger.
For those of you not familiar with a Peritoneal Dialysis treatment here’s a short primer. For me, the Fresenius Liberty Cycler, a computer-controlled pump and drain system, upon attachment to my stomach catheter at night, checks to see if I have any fluid that needs to be drained, then pumps in two liters of special fluid (fill), that it times to stay in my stomach liner for two hours (dwell), then pumps this fluid and any extra it has pulled out (drain). It accomplishes this over four cycles which takes upwards of eleven hours to accomplish.
So in the normal operation of the Cycler, I have four drain cycles. This is where my cycler has difficulty. More often than not, during the drain cycle, the cycler does not, can not, will not or something else not operate as designed, and it throws a Klaxon-like alarm where I have to wake up, get out of bed to push buttons on the cycler to reset the alarm and drain cycle. From experience, I know that I cannot just jump back in bed but must remain in an upright position for it to complete the drain cycle before I can get back in bed and attempt to go back to sleep. This can take anywhere from 20 minutes or less to accomplish. Only then can I get back in bed and attempt to return to sleep.
Keep in mind that I am not the only Liberty Cycler user experiencing such alarms!
Erin Davis writing in the 8/7/2023 issue of diaTribeLearn wrote an article titled “Sleep Hygiene; A Checklist for People with Diabetes.” Erin states “
“You may have noticed that when you have a bad night’s sleep, your blood sugars are high. It’s not just a fluke. Sleep, or lack thereof, impacts blood glucose levels, and in turn, glucose can affect sleep quality.
While you’re sleeping, your body is performing serious maintenance. Say if your sleep is interrupted – due to something like waking for a baby or dealing with continuous glucose monitor (CGM) alarms – you may find it difficult to manage your blood sugar. “
I’m laying the foundation that Fresenius’s adamant refusal to alleviate my cycler alarm situation has consequences beyond lack of sleep; Fresenius may well be the cause of my demise at an earlier date than God has planned. God help us all (Especially those of us using Fresenius’s Liberty Cycler!)
Writing in the August 5-6, 2023 edition of The Wall Street Journal Review p. C14, Ed Catmull, a co-founder of Pixar (along with Steve Jobs and Alvy Ray Smith in 1986), mused “Failure is a natural byproduct of innovation, and change is the only constant in every industry.” We are certainly seeing this in all things that touch us as peritoneal dialysis patients.
Take failure. From my perspective, the Fresenius Liberty Cycler is plagued by many “failures,” idiosyncrasies, and inconsistencies, and at times seems to have a personality of its own. I’d like to relate what took place last Sunday night.
As per usual I was on the fill cycle of the cycler by 2135, having installed the Cassette with my new and revised methodology. I awoke in the morning at 0900 with the dialysis treatment completed. On the surface this would appear to be a thumbs up but not so. Yes, I experienced no alarms, but… I usually put about 7900+ mL of fluid in, and have about a microfiltration rate of 6-900 mL. This means I am pulling a little less than one liter of fluid out of my body during dialysis in excess of what was put in. This is good in that this is the way we get rid of excess fluid by dialysis. During this dialysis cycle, 218 mL of fluid in excess of what was pumped in as part of dialysis remained. The bottom line my weight was up 2.2 lbs this morning. When I light off the Cycler tonight I expect it to immediately drain off excess fluid before starting its normal fill-dwell-drain X 4 cycles.
Change IS all around us regarding dialysis and those maladies that contribute to it. Take Continuous Glucose Monitors (CGMs) for instance. While they have been around for some time, and have been improved over time, our governmental bureaucracies are still fumbling around with funding their obvious value to diabetic and dialysis patients. People and organizations resist change, even if it is good.
Newton’s first law of motion states “In the absence of any net force, an object in motion continues in motion in a straight line at a constant speed.” I intend to be and hope to be part of that force to aid and abet meaningful change in the dialysis world and worlds that intersect it on a Venn Diagram.
This falls into the category of “It happened to me and it could happen to you!” So what is this “happening?”
The last time I applied a new Libre 3 sender to the underside of my upper arm, it bleed like a stuck pig, however stuck pigs bleed. It WAS somewhat profusely and went through my sweatshirt and elicited from my wife “What is that?” in an alarming fashion. I knew I was in trouble – again, but NOT WHAT FOR. Keep in mind I have been using the Libre 3 without any such occurrence for months and months.
We cleaned up my underarm area with alcohol swabs but left the expensive new sensor in place. I did not bleed anymore and it has been in place and operating normally ever since.
If it happened to me, it can happen to you also…… Be forewarned.
