Connecting to the Baxter Cycler

I'll go step-by-step. People who love excruciating detail will appreciate this post.

After taking a shower, cleaning the exit site of the catheter on my abdomen, drying off, and getting dressed, I start the process of getting hooked into the peritoneal dialysis (PD) machine. 

Supplies

• 1 HomeChoice Baxter PD machine
• 1 Cassette Tubing for cycler
• 3 Dialysis Solution Bags
  • 6L 1.5% Dextrose
  • 3L 1.5% Dextrose 
  • 2L 7.5% Icodextrin
• 1 Mask
• 1 15L Drain Bag
• 1 Bottle of Alcavis 50 High Level Disinfectant
• 2" x 2"  Clean Gauze
• Hand Sanitizer
• Plastic Urinal for overnight use

Procedures (Total time is about 20 minutes): 

1. Make sure my hands are clean. Since I've just taken a shower, they should be, but I'll often use hand sanitizer anyway.

2. Open the solution bags and check for "SEAL" (Strength of solution, Expiration date, Amount, and Leaks).

3. Place the 6L 1.5% Dextrose bag on the cycler machine.

4. Turn on the cycler.

5. Wait for the LCD screen to show "PRESS GO TO START"
     a. Press GO button. It'll make a loud beep sound. Sometimes you need to press the GO button twice)

6. The screen will say "LOAD THE SET"
     a. Remove the cassette tubing from its sealed bag, and close all 6 clamps on the tubes.
     b. Open the load door and place the cassette inside. Close the door.
     c. Place the blue organizer of the tubes onto the front of the closed door, fitting it on both notches.
     d. Open the drain bag and close only the large white clamp on the bag, and spike the drain line from the cassette into the bag.

7. Press the GO button. The screen will say "SELF TESTING." Wait 2-3 minutes while the machine goes through this testing of the lines. Use this time to roll up the plastic bags that held the dialysis solution bags, and put them in a box for recycling later.

8. Put on my mask and wash my hands with the hand sanitizer.

9. When the screen says "CONNECT BAGS & OPEN THE CLAMPS"
     a. Connect the tubing line with the RED clamp to the heated bag, which is the 6L bag on top of the cycler. Break the frangible on the bag. Make sure it's fully broken.
     b. Connect the line with the first WHITE clamp to the 2nd solution bag, the 3L 1.5% Dextrose. Break the frangible on this bag. Make sure it's fully broken.
     c. Connect the line with the BLUE clamp to my last bag, the 2L 7.5% Icodextrin bag. Break the frangible on this bag. Make sure it's fully broken. *
     d. Open clamps for the Solution bag lines and the patient line on organizer at the far left.

10. Press the GO button. The screen will say "PRIMING" and the machine will prime all the lines. This takes about 7 minutes, so I'll go brush my teeth, floss, put on my retainer, and trade my contact lenses for my glasses.

11. When "CONNECT PATIENT" and "CHECK PATIENT LINE" alternate appearing on the screen:
     a. Use hand sanitizer to clean my hands
     b. Take out a 2" x 2" gauze and dispense some Alcavis 50 on it.
     c. Use that gauze to scrub the still-closed minicap on the transfer set part of my PD catheter.
     d. Connect my transfer set to the patient tubing line CAREFULLY and ASEPTICALLY by removing the pull ring from the patient line, removing the minicap and then immediately connecting the transfer set to the patient line. Woohoo!! I am now connected!
     e. Press GO button. The screen will say "INITIAL DRAIN"

12. After initial drain, the treatment begins. The whole treatment for me takes about 9 hours.

Many thanks to my main nurse Suchen at Satellite Wellbound in Mountain View for writing up the guidelines which I've adapted for this post.

* I repeat and three-peat this note about checking that the frangibles are fully broken because even though, in theory, the machine should be able to detect a bag's solution not running through the tubing while the machine is working, and then sound a beeping alarm and display the problem, this was definitely not the case for me once.
     The last night of Coachella this year, I returned to my room exhausted, and neglected to fully break the frangible on the 2nd bag. The next morning, I noticed that the bag was still full and I hadn't received any of that dialysis. I spent the afternoon on the drive back to the bay area feeling quite weak and only able to do the bare minimum in terms of walking and moving around. Make sure those frangibles are broken!)

Nighty Night

As I sit and type this in bed, the HomeChoice Automated PD System whirrs and pumps away. It's not terribly loud, but it is noticeable, and some patients have trouble sleeping with it. To drown it out a little, I sometimes use a rain noise app. And to eliminate the LCD display's brightness, I go to bed wearing a sleep mask.

I use the machine every night. It gets connected to some bags of solution with dextrose and icodextrin in them, as well as my peritoneal dialysis catheter that I had surgically placed on/in me in December. The machine warms up the solution via the heated cradle and automatically goes through a Drain, Fill and Dwell Cycle every hour and 50 minutes or so, for four cycles, which add up to nine hours total.

Thanks to my rain and thunder app and the eye mask, I usually sleep through it all, only waking up to pee in a portable plastic urinal in the early morning. Every time I pee, I try to remind myself to be thankful that I still have residual kidney function left to still make urine.

There used to be some drain pain, a kind of uncomfortable cramping on the insides. It's much better these days, but I used to have to sit up and adjust positions and clench my teeth to fight it, it hurt pretty awfully.

It's late and I'm sleepy. Next time, I'll talk about the nightly preparation ritual to get connected to the machine. I also realize I need to cover more of the progression of my CKD, from Stage 3 to Stage 5. That will be another blog post. Thanks for going along with the non-chronological nature  of this.

Insurance

I am fortunate to have a possible living donor, but as a backup plan, I have also listed at Stanford Medical Center for a deceased donor's kidney. The problem is that the average wait time is currently 8-10 years, and the average number of years that one usually survives while on dialysis is 4-6 years.

It's possible to get listed at more than one facility, so I recently tried getting listed at UC Davis Medical Center. I had not heard back from them for over a month. I called and learned that my insurance through work, Cigna, is no longer contracted with UC Davis, and thus my application to get listed through them was denied.

It seems totally arbitrary that Cigna would stop working with them, but I've learned an important lesson. When it comes to medical insurance, don't take it for granted that yours covers you wherever you want. Check first!

I'm now looking into Portland's Oregon Health and Science University and Seattle's University of Washington Medical Center, both of which Cigna contracts with. They also have shorter average waiting times at 2-3 years each.

Adjustments: Food and Diet

A big part of adjusting to a life with CKD was adjusting my diet.

I mostly felt and looked fine while at CKD stage 3, and didn't feel the need to tell many people about the specifics of my disease. I thought it'd be better to keep private about it, and not risk the appearance of sympathy-fishing. To be honest, I was probably also too full of pride to admit right away that I was not well.

However, the topic of my illness came up pretty frequently whenever food was involved. I had been known for having a voracious appetite, so when family or friends noticed it wasn't as inclusive of things like burgers and steaks, I would usually just say "doctor's orders" and then expand upon it if they inquired further.

"I have a chronic kidney disease," I'd say. "That means I have to watch what I eat a little more than before."

My nephrologist recommended that I eat more heart-friendly protein, like chicken and fish and tofu. These protein choices were also to be limited in quantity, to about the size of my closed fist. As a result, I started eating more of a vegetarian diet. 

Potassium was another concern, as was phosphorus. The kidneys remove excess amounts of both, but when they're not doing in good shape, potassium and phosphorus buildup can occur. Too much potassium can lead to nausea, weakness, and numbness. Too much phosphorus can eventually pull calcium out of your bones, making them weak.

I also started to be more conscious of eating less sodium. Kidneys also help regulate blood pressure, so when they're not healthy, one's blood pressure tends to go up. Watching your salt is good for your blood pressure, so I started reading food labels and eating blander foods.

Now that I'm at CKD stage 5 and on dialysis, my dietician recommends that I actually eat a little more protein. The dialysis process removes protein from your system, so it helps to have more. After a couple years of a more vegetarian-heavy diet, I was pleased to switch to more healthy meats. I'm also allowed to eat a little more potassium and phosphorus than before, since dialysis removes these minerals as well.

Discovery

Up until my early 30’s, I’d always thought of myself as fairly healthy. In 2009, my cholesterol, blood pressure, and BMI were in the normal range. I was a skinny guy who enjoyed lower-impact activities like beach volleyball and yoga. I didn’t smoke and wasn’t diabetic. I drank occasionally, ate omnivorously, and felt pretty good overall. I consumed a good share of veggies and fruits, but I also ate meat.

In my late 20s, I was feeling healthy enough to skip on a couple years of physical exams, but I had recently gone in for a checkup. 

And so, I happened to be at a Five Guys chomping on a huge cheeseburger when I got the call.

“Hello, Mr. Tran,” said the receptionist. “We need you to come back and do another blood and urine test."

“Really? Why, what happened?"

“Well, the doctor thinks your numbers for the protein level in your urine were above the normal range. He wants to double-check to make sure it wasn’t an anomaly.”

“OK.”

This didn’t sound good, I thought. I put the cheeseburger down, looked at it, and told my friend Omar sitting across from me what I’d just heard.

Another blood and urine test yielded similar results, so my doctor determined that I probably had a Chronic Kidney Disease (CKD) called IgA nephropathy. After a biopsy of my kidney tissue confirmed it, I tried to settle into the news. It was a serious, but treatable disease. No known cause or cure. I was at Stage 3, meaning about 40% of my kidney function remained. It was likely that my kidney function would diminish over time, and I could try to manage it with diet and exercise to slow the disease's progression. My symptoms of the time weren’t so bad: foamy urine, some dry, slightyly itchy skin. As I said, I felt fine.