The 7.1 Ridgecrest earthquake hit while the cycler was priming last night. That is the step right before I connect. I remember wondering if it was “The Big One” and whether I should connect in case the power failed later. Everything was fine though the house rocked for a long time.

I thought about getting a battery backup; I have a small one for my cable modem and WiFi router. I put a power meter on the cycler and it looks like it needs about 600Wh total with a peak draw of 600W. The battery backup for PCs and other equipment don’t seem to last that long. Rack mounted larger systems that seem to work cost >$2000. At that price, maybe I should put in a Tesla PowerWall.

Tomorrow is my two-year dialysis anniversary. I had my chest catheter put in on July 3rd, 2017 and started hemodialysis on July 5th. At the time, I thought it would be a quick journey, just enough time for my live donor to pass screening. First, my donor was rejected by the social worker at the original transplant center. We then transferred our case to UCLA but ran into more issues (shadow in CT scan, botched biopsy, high blood pressure) for both my donor candidates. I’m still listed at UCLA but looks like I will be on dialysis for a few more years waiting for a transplant.

I got a call from Baxter telling me that my shipment will be split. This was followed by five emails from UPS notifying me of an impending delivery. I checked the details and each box is about 29 lbs. It’s likely boxes of 3L or 6L solution. There are still 30+ boxes in this month’s order so not sure why the split delivery. Maybe they stock different solutions in different warehouses.

Got a little scare on Friday. Instead of light yellow, the fluid I drained at work was light pink or peach colored. This never happened before so I Googled and it seems to be blood in the fluid. That night, the 15L drain bag was also pinkish.

Fortunately, the color returned to “normal” the following night. I think a small blood vessel burst in the abdominal wall and leaked some blood into the fluid. Usually it goes away after a few days.

I’m so tired. The fatigue was pretty bad when I was on hemodialysis. We thought that things may improve on PD but so far, I have not been able to sleep through the night. Either the cycler is beeping, or pumping away at an empty bag, or the overfill wakes me up every few hours. Since the weekdays are taken up by dialysis and work, I’m pretty much in bed sleeping the entire weekend.

So tired now but still need to setup and hook up to the cycler.

Last night I chose 2.5% dextrose for all three bags of dialysis solution. I must have miscalculated total UF (ultra filtration) plus final manual drain and left too much solution behind. I think it was 638 mL + 273 mL. I guess I was targeting about 900 mL total but for the all “green” (color code for 2.5% dextrose) solution, total UF should be around 1500 mL.

Anyway, I just drained out 2380 mL at noon and the drain bag was pretty full. Abdomen is still sore from carrying all that fluid around for six hours.

What 5+ lbs of drained solution looks like:

Dialysis is expensive. When I was on in-clinic hemodialysis 3x per week, I (or my insurance) was paying about $20,000 per month. That’s right… quarter of a million dollars per year. However, I know most of the patients were on Medicare since few looked like they were able to work.

Recently I spoke with someone that works for the largest provider of hemodialysis services and he gave me a few numbers:

• Cost per daily session = $280
• Price charged to Medicare = $260
• Price charged to private insurance = $1,000

This is consistent with a Baxter website for providers that listed the cost at $42,000/year and Medicare revenue of $41,000/year. Basically dialysis clinics lose a bit of money on each Medicare patient but make a lot from parents with private insurance. My source also told me that 90% of patients were on Medicare so all the profits came from the 10% on private insurance.

I’m not sure why my clinic (non-profit hospital affiliated) charged 50% more. Maybe because I was using a chest catheter instead of a fistula? All I know was that only nurses could connect/disconnect me whereas technicians were able to work with patients with a fistula.

I was super paranoid about getting an infection with the chest hemodialysis catheter so I was careful never to get it wet. That meant two years of towel “baths” and shampooing in the bathroom sink. When the chest catheter was removed and the wound closed, I took a very long and very hot shower. It was the first time in two years that I felt clean.

My PD nurse is a great guy but he really wants me to extend my overnight cycle time. Currently I am on the cycler for 9 hours plus a final fill that needs to be drained at work. Here is my typical weekday starting at 7am:

Start	End	Activity
7:00am	7:30am	Morning prep; breakfast
7:30am	8:30am	Morning commute
8:30am	Noon	Work
Noon	12:30pm	Manual drain
12:30pm	6:00pm	Work
6:00pm	7:30pm	Evening Commute
7:30pm	8:00pm	Dinner
8:00pm	8:30pm	Exit site care; shower
8:30pm	9:00pm	Connect to cycler
9:00pm	6:00am	Dialysis cycle
6:00am	6:30am	Disconnect from cycler
6:30am	7:00am	Free time!

However, often the cycler has problems with fills/drains and the cycle drags out to 6:30am so it’s already 7:00am when I’m finally disconnect from the cycler. So depending on the evening commute traffic, I have 30-60 minutes each day that is not dialysis, work, or commute. If I go to a 10 hour cycle overnight, then I basically have no life except for half-day Saturday and Sunday.

The black thing at the bottom left of the PD cycler (pictured in previous post) is a SmartMedia memory card. It allows the cycler to record data each session, which I then bring to the PD nurse so they can have a log of my treatment. The card is basically a large SD card (47mm x 35mm). The only other one I’ve seen was a 16MB card I bought for my (very) old Rio PMP300 MP3 player.

This is my PD cycler:

It is manufactured by Baxter and I need to order consumable supplies each month. They have a very strict calendar regarding supplies, and will start calling you daily if you have not placed your order. The next delivery date is July 5th and my order had to be called in by tomorrow at the latest.

Since my PD prescription requires three bags of solution each night and there are multiple options for dextrose content, it takes a bit of calculating to place the right order. I ended up ordering 26 cases of 6L solution and 7 cases of 3L solution plus 4 cases of miscellaneous supplies (drain bags, caps, tubing). To prevent infections, everything is single-use and disposable so I generate about two bags of trash each week. Very wasteful.

“Why are you on dialysis?”

So about five years ago, I got an infection on my foot/ankle. I stupidly picked a scab and some of the fluid/pus may have leaked into a cut. It quickly got out of control and urgent care sent me to the ER. Anyway, they ran a lot of blood tests and one of the results said my eGFR is 40-something. Nothing alarming but I should see a nephrologist (kidney specialist) for followup. For those that don’t know, eGFR is short for estimated glomerular filtration rate and can be used as an estimate for kidney function %.

This began three years of monthly doctor visits and multiple hypertension drugs while watching my eGFR drop. Once it hit 15, the doctor starting talking about dialysis and transplants. For many months it held at 12-13 but in late June of 2017, the number dropped to around 5 and my nephrologist recommended that I get an emergency chest catheter immediately. I remember the operation was scheduled for the morning of July 3rd and I started in-clinic hemodialysis on July 5th.

What caused my kidneys to fail? It was probably years of uncontrolled type-2 diabetes and hypertension. Looking back, there was also a period of depression where I didn’t feel like taking care of myself or much else. Even though I was seeing a specialist for several years before dialysis, it was probably too late to stop the trend towards ESRD (end stage renal disease).

I stayed on the “emergency” chest catheter for almost two years waiting on several live donor leads but both ended up being rejected for medical reasons. Finally my nephrologist asked me to decide on either continuing with hemodialysis but using a fistula, or switching to peritoneal dialysis. So in May of 2019, I had another catheter inserted but this time in my abdominal cavity, and removed the chest catheter.

The moral of this long post? Get your health checkup and bloodwork done! I didn’t feel anything related to kidney failure until the very end (fatigue and fluid retention).

I’m standing in front watching the cycler doing drain 5 of 5 and it’s showing a drain volume of 3065 mL. My fill volume os only 2400 mL so the cycler left behind ~500 mL on the fourth drain. I’ve seen a drain volume as high as ~3400 mL before. I’m sleeping ok on PD but most of the time is this overfill that wakes me up and then I have to do a manual drain on the cycler. I think the catheter is in a non-optimal position when I’m lying down for compete draining so I have to sit or stand to get all the fluid out.

My ankle cramped last night. I think I was turning in my sleep and my right ankle cramped. It was weird. My legs would cramp all the time during hemodialysis sessions but this time it wasn’t a large muscle… just the ankle. It still hurt a lot.

It’s still hard to know what solution to use. It was much easier with hemodialysis where the nurse just enters a number into the machine.

I’m at work right now draining my last fill from this morning. Last fill is 1500 mL so I’m draining anywhere from 1500 mL to over 2000 mL depending how how thorough the last drain was on the cycler.

Since we’re all in cubicles at work, I had to get access to the mother’s rooms. We have four of them at work and they’re not that busy currently. I’m usually on here for 14 minutes since it’s only a quick drain.

Just finished disconnecting myself from the PD machine. I’ve been on peritoneal dialysis for about two months now, after 22 months of in-clinic hemodialysis. Currently I am on the cycler for nine hours plus a final fill that I carry until ~noon each day. Usually I start the cycle at 9:00pm and finish around 6:00am.

It’s been almost two years since I started dialysis. I really don’t have anyone to talk to about the struggles of life with dialysis so I’m going to share with Internet strangers.