Editor’s Note: This is part 2 of a 3-part caregiver story, submitted to us by Joan Foster, who was a caregiver for her husband Charles’ Chronic Kidney Disease (CKD). To read part 1, please click here. To read part 2, please click here.
Charles is retired now from his 35 years job as a State Vehicle Inspector and mechanic with his own shop. So cars were his thing for a long, long time. This made me think about all the drains and fills he done throughout his career. We tested my miniscule knowledge of that, but all I could come up with was an oil change! So, we had a conversation one day about all the drains and fills done in a mechanic’s career. Charles said that oil change drains took the longest time especially when it was cold outside. Cold temps. make the oil thicker and that makes the process take longer-A pain when he had lots of folks waiting to get their vehicles serviced in some way or were waiting to get state inspections done. The law mandates that all repair work must stop for state inspections to be done. I asked him, “Did you ever cuss the oil for taking so long to drain?” He replied, “Many times!” and laughed. Charles said the following: Cooling System Drain, antifreeze drained out and fresh antifreeze put in. Transmission Fluid, old drained out, filled with new transmission fluid. No tubes or hoses used, just unscrewing drain plug and the engine. Unscrewing the petcock on the radiator. And the grease in the back differential, located in the back axle, unscrew the inspection plate and then drain out the grease, refill with fresh grease and close back up. Not a fluid, air in tires, refill lost air in the tires. Windshield Washer Tank, refill with fresh fluid. Air Conditioner on a vehicle, sometimes drain out old freon, coolant, then fill with fresh coolant. And then when the alarm went off, I jumped up from the bed and started singing, “Here I come to save the day, Mighty Mouse is on the way,” except I slightly changed the lyrics, “Here I come to save the night, Joanie Mac with all her might!” Or “Here I come to save the day, Joanie Mac is on her way!” And, occasionally, with having to wear a mask during each set up, Phantom of the Opera comes to mind and I sing even with my mask on.
And more of this when it comes to household repairs where drains and fills are required. When our regular plumber turned 92 and had to retire, Charles had to learn how to fix our water pump when it becomes waterlogged. Mr. L taught Charles every step and watched him accomplish it correctly. We had already learned how to identify when the pump was waterlogged because of all the knocking noise in the house’s pipes. Too much water and not enough air to keep that necessary balance. The process of correcting this is first to attach a hose to the water pump and to drain all of the water out of it, out into the yard. Then an air compressor hose is attached to the empty water pump and air is pumped in to the correct amount. After this, the water hose is attached back to the water pump and water is filled into the water pump. The knocking noises will get corrected after a bit of time when the newly drained and filled water pump does its job. Also, the water pressure will return in the bathtub and showers and sinks. Toilets will be quiet again when flushed. Such a necessary process! By now, you’ve caught on to the drains and fills analogies, so you know where Charles and I are going with all of this. Especially, when he was doing all manual drains and fills, we have chatted about his experiences with this, since the water pump situation must all be done manually as well. Not so much with the Cycler use now, but it would be so helpful to have a cycler-type piece of equipment to help do the water pump, although I suppose one could say that the compressor is kind of that equipment. Anything else to lighten up the whole process and to make it go more quickly would be so nice. We felt this way with all manuals because they were 4 times per day and took a while to complete. Thankfully, the nighttime Cycler helps quite a bit. His prescription did change for his dialysis when he had to add one manual drain during the daytime, but all in all, it was still better than all manual exchanges. (drains and fills!) And ever seeking to help make our pd home dialysis better and improved, our RN worked on an even shorter exchanges of drains and fills! This would work unless his dialysis adequacy was not being met. We learned to expect changes, one way or the other!
Finding such interesting topics of conversation relating to Charle’s dialysis and the drains and fills aspects, we have came up with other household equipment which utilize the fills and drains, in differing order, of course, but the same principles involved. Think about it yourself, please, in the next several moments. What household items come to your mind when it relates to fills and drains? List them here:
No doubt, you came up with washing machine, your dishwasher, if you have one in your kitchen. And not a machine, but if you do not have an automatic dishwasher, you thought of your kitchen sink . . . filling your sink with water and your dishwashing liquid, washing your dishes “manually,” then removing the plug and draining out the soapy water, so that you can keep the faucet running to rinse off your soapy dishes. However, if you are fortunate enough to have a double sink, you may be able to place your washed dishes in the other sink and then proceed to rinse them off. Taking a tub bath can work much the same way, by plugging the drain, perhaps using some bubble bath, bathing and washing, then releasing the soapy water, standing under the shower head and totally rinsing off. Thus, one more time, a fill first, then a drain! The only other one is filling a pot with water, boiling it, pouring in some pasta or rice or potatoes, cooking until tender, then draining in a colander or holding pot top just right and draining hot water directly into sink drain carefully. Watering can for my plants, fill with water, then drain it out while watering flowers.
One thing Charles and I experienced is that pd home dialysis does require time and having had one daytime manual drain, put back in, was a bit more restrictive for our daily activities. Several months ago, the two of us were cleaning up our garage, which is not a loved chore for either of us. Time for his manual drain arrived and he seemed especially happy about it, because he could rest after this harrowing garage grooming task. He spoke up, “Well, I have to go dilate now!” “Wait, what?” I thought to myself, with a grin creeping across my lips/face. I couldn’t help but be amused, wondering if he realized what he had said. I chuckled out loud and he stopped in his tracks for a minute before walking up the steps into the house, “What’s so funny?” he asked. “Oh my goodness, Charles, do you know what you said?” I started howling with laughter. “You said a very different medical term . . . dilate instead of dialyze!” He inquired, “Dilate, wait I forgot what that means, except for when my eye doctor puts drops in my eyes to dilate my pupils during the exam.” “Oh no, that’s not the type of dilate I’m thinking about,” I replied. With a look of confusion, he asked, “What are you talking about, then?” “Dilate and Dialyze are two very different actions, Charles” “Dilate is what a woman does when she is getting ready to deliver a baby through her birth canal.” “Oh, yeah, that’s right. I’ve heard about that! Sounds really painful!” Having birthed 3 sons that way, I agreed with him about the painful part! We laughed together a few more minutes and off he went to drain. Just another funny in our world of dialysis! Not wanting to make that mistake again, most likely, Charles oftentimes calls his daytime manual drain something different now. “I’m going back to do my SOAK now!” Every time he says that, we find the humorous side of that statement. Why does it come across funny to us? Interestingly, the soaking part has already taken place during the DWELL time. Four hours thereabout with the dialysate doing its job soaking up all the toxins which the kidneys in their failing systems have not, through his perineum. Charles actually drains his soaking fluid, now called effluent when it drains into the drain bag. Soaking carries the image of sitting in a bathtubfull of warm water, perhaps with some epsom salts to sooth and relax and possibly draw out any pains from sore and tired muscles. It’s probably just us and our silly sense of humor, but referring to all of these different analogies helped lighten up the whole dialysis experience for us.
We have all probably said this at one time or another in life, but especially while having to learn it in high school: “Why do I have to learn this crap? I will never use this stuff!” Well, let me just say, “Yeah, right!” Being my husband’s caregiver, care partner for his pd dialysis, I am using much of that math! First of all, while Charles was doing all manual exchanges, and we were waiting on our Kilogram scales to get his daily weights, I had to convert pounds in weight measures to kilograms, by multiplying the weight in pounds by 2.2 to get the kilograms weight for daily documentations. Declared: multiplication and division used! Math was also used during all manual drains, too. Then came the overnight Cycler stats recorded on the machine and the one daytime manual drain and subtraction and addition used, also! And anytime the cycler records a negative total ultrafiltration known as “UF,” I have to use that negative integer and subtract it from the total manual drain after I have already subtracted the Last Fill Volume for that daytime dwell, in order to record the actual total UF for that day and that situation. Numbers do matter and in pd dialysis, one must perform certain operations with those numbers for an accurate and precise result, which gives a picture of how well all of the dialysis is truly going. I know that all of this sounds so confusing, so as when we were taught in high school in algebra or another type of math class, let’s look at an example, to help clarify.
Example #1: Cycler readings:
Total UF recorded on Cycler and displayed on Screen: +243 mL. (I put plus sign.)
Last Fill Volume: +2005 mL.
Total Daytime Manual Drain Volume: +2600 mL.
1st Operation: 2600 – 2005 = 595 mL.
2nd Operation: 595 + 243 = 838 mL. (Total UF for Dialysis Treatment for Day)
Example #2: Cycler reading with negative UF amount: (A cycler treatment overnight)
Total UF recorded on Cycler and Displayed on Screen: -243 mL. (- sign on Cycler)
Last Fill Volume: =2001 mL.
Total Daytime Manual Drain Volume: +2600 mL.
1st Operation: 2600 – 2001 = 599 mL.
2nd Operation: 599 – 243 = +356 mL. (Total UF for Treatment for Day)
More math involves how much Heparin to inject into the dialysate bag on the heater tray of the Cycler. (Heparin is injected into every fill bag when doing manual treatment, however the amounts differ. If manual dialysate bag holds 2000 mL., then only 2 mls. Go into the bag. With Cycler, the dialysate bag holds 6000 mL., so 6 mls. of Heparin go into the bag on the heater tray of the cycler. Heparin helps to reduce or even eliminate Fibrin, which is protein that can drain out with the effluent during the drain portion of an exchange. Fibrin can clog up the drain line tubing and inhibit drain into the drain bag or the commode.
Protein intake during meals is crucial for the body and a minimum of 70 grams of protein per day being eaten is so important! Knowing this is not the problem or the challenge; Making it happen is Label-reading and chart-reading and then the operation of addition to accomplish this. I’ve become quite a whiz at math! And fortunately my husband can still “whiz” keeping his bladder functional, though decidedly less quantity, but with daily and nightly dialysis and voiding, it does help with a feeling of somewhat normalcy.
Yes, numbers matter! Blood Sugar numbers are crucial in dialysis. Blood Sugar must be below 250 for pd dialysis to work effectively. Yes, my husband is an insulin-dependent diabetic, so multiple blood sugar readings per day are necessary, too. Gotta watch that Blood Sugar and watch intake of carbs and sweets. Add up the carbs to stay on tops of things as well as adding up the daily protein intake. Blood sugar is a little high, use the sliding scale insulin chart and take that amount of units.
Hubby does stats every morning after coming off of the cycler and waking and rising. Weight: 207.9; Body Temp: 97.2 Degrees; Blood Sugar: 198; Blood Pressure: 142/80; Pulse: 71. These numbers vary daily. Both C and I agree that neither of us has ever really been numbers people. The things we do until “our number comes up!”
Chuckles, giggles, laughter, smiles . . . humor got us through it all! There are times when both of us felt drained from the various aspects of pd home dialysis,- like when the Cycler alarm goes off 5 times in one night. Usually that happened because Charles was lying on the catheter and was compressing it. I got so that I could seem to hear the cycler begin its sounds for the drain, and so I’d say “Get on your back, Charles!” Then I’d go right back to sleep. Occasionally, he was on his back, but there was some other glitch. Having to get up and down from sleep can be very draining, overnight and the next day. Yet, there are other times when we were filled with joy over not having a single alarm during the night. Yes, there were times when we were filled with worries, too. Like the time that Charles got stomach cramps and we were afraid that something was amiss in his tummy. Inflammation can occur, but we were blessed to have minimal stuff occur. I suppose if I had to select one song to sum it all up, I would have to say “Smile” by Nat King Cole. And like it says in the Book of Ecclesiastes, “To everything there is a purpose under heaven . . . a time to laugh and a time to cry,” and he would reply, “Yep, all hooked up!” I came up with our own version of Elvis’ song, “All Shook Up” and changed the words to “I’m All Hooked Up!”
Inadequacy with C’s pd dialysis resulted in adding a 3rd bag of stronger prescription dialysate to the mix. Thankfully, it did the trick! For a while. Sadly, other life changes resulted in Charles having to discontinue home dialysis, but he had a pretty long run of it, 19 months. No more fills and drains for Charlie now. He got the pd catheter removed surgically on Tuesday, January 24th, 2023. It feels kind of sad. Changes are like that. However, we were filled with thankfulness for his new experiences with hemodialysis and we hoped for a long, successful run with that dialysis method.
Fills and Drains through catheters, and so the process goes-
Nightly on the cycler, with automation flows.
Staying flat on one’s back avoids the alarm-
Sleeping well overnight surely does no harm.
Before it all begins, though, be sure to scrub your hands!
Two minutes of the washing is what the rule demands.
Drying with a paper towel then turning off the faucet,
Watching not to touch your hands on anything as you toss it!
Then use the sanitizer pump to add the needed care,
Of assuring that your hands are clean as you now prepare-
Setting up the cycler with cassette and dialysates
Making sure the caps are snug and the bags have open gates.
Following instructions on the screen and you are set to proceed-
Always using the aseptic technique for every step you need.
Making sure the air flow is off and clamps are closed secure,
Keeping your hands off your catheter cap, then hooking up once more.
“It’s an open and shut case” when doing fills and drains-
No shortcut or any another method remains!
Open the clamps you’re instructed to do . . .
And close off the ones the directions say to.
In the morning, use the aseptic technique once more,
Carefully unscrewing your catheter to keep it pure.
Then tuck it away in your belt safe and sound,
And have a great day until night comes around!
Charles officially had his first hemodialysis on Monday, January 23, 2023. He was fortunate to live another 2 1/2 years and died on June 23, 2025. He died of heart failure, but hemodialysis was still working for him. Several days before he passed, he sang a portion of the song, “Holding On” to me, promising that he wanted me to remember always that he would be holding on, waiting for me to join him. If interested in listening to that song, it is by Andrea Bocelli and Gwen Stefani.
About the Author:“Counting our ‘courting’ year and marriage, we were together for close to 23 years. He began his decline Christmas night, December 25, 2020 when he had his first heart attack, while we were visiting my oldest son and his wife and family in Georgia. I became his full-time caregiver and care partner that evening and remained in that place until his death on June 23, 2025.” – Joan
