Heart rate currently 150+. I’m also dizzy and short of breath. Not sure of this is related to kidney failure and dialysis.

Blood pressure is also super low at 88/44. Probably because the heart can’t pump blood properly at 150 bps.

I’ve been having a lot of problems manually filling at work this past week. The fills drains are free; it’s the fills that are not working. I don’t have an IV pole at my desk so I’ve been placing the fill bag on a shelf. For some reason, the solution is not flowing. I have to hold the bag upright with my arm for it to flow. So I sit in my chair for 30 minutes holding the bag straight up until it’s empty. Sigh…

Sigh… each weekend seems to be worse than the previous. Since adding the extra hour at night and an extra manual fill during the day, I’ve been feeling less tired. Add a small cup of coffee in the afternoon, I have not been falling asleep on the drive home from work. I also attended a potluck with my church cell group and was telling everyone that I felt better.

So on Saturday night, I started connecting the cycler as usual. However, after priming, I noticed that the patient line was still full of air. I re-primed the cycler and the same thing happened. Finally, after putting the tubing on the floor for a gravity assist, the air was purged from the line. That should have been a red flag but I didn’t want to throw out 15 liters of new solution and start over.

As expected, all the drains/fills took forever with slow flow warning alarms going off ever few minutes. I think I started a bit late but was still on first drain after three hours. Finally, after the second drain, I let the cycler do a half fill then turned it off. I carried that partial fill until about 10am, drained it and did another manual fill of about 1800 mL, then drained that at 4pm this afternoon. I was hoping this was enough to compensate for the incomplete overnight cycles.

Having not eaten anything all day, I tried taking a bowl of chicken noodle soup. I was about 90% done when everything came back up. Luckily I made it to a toilet in time since more fluid came out than the soup. It felt alike all the water I drank today came up as well. Ugh.

Now it’s about 7pm and I need to start connecting again. I’m hoping I can try some more soup after connecting. Despite what I posted earlier, this is no way to live. I’m worried about going to work if I’m going to vomit up 12 hours of food/drink randomly. Here’s hoping the cycler works tonight since I don’t want to go through today’s fun again.

Ugh! It’s been only a few days and I already having a difficult time with the midday fill. First, I have to do the fill at work. The schedule is to have me drain the final fill from the cycler around noon and manually fill about 2000 mL for the rest of the day. However, I do the exchanges in my cubicle and I do not have any good place to hang the solution bag. Our cubicle have low walls and I don’t want to bring an IV pole to work. Right now, it’s taking over an hour to do the manual fill part, and the solution is COLD!

This morning, I felt really full for some reason. I even got up to stand during the final drain so the final volume will be ~1500 mL. However, with each bump in the road, I felt the fluid sloshing around. I ended up draining about 2300 mL at 9am but still had abdominal pain throughout the entire day. I also skipped the manual fill today.

Went to see my PD nurse after work today to pick up new programming for the cycler and more supplies for the additional midday fill. I guess we’re going to add an extra fill everyday instead of just weekends. I’ll have to figure out how to do a manual fill at my desk at work. It will be an extra 2000 mL fill right after the midday drain. Ugh.

So now the cycler will run for 10 hours each night. I have to find an extra hour from work. I’ll see if I can go in earlier and leave by 3pm to get a bit of break on traffic. Anyway, this will be temporary since I either get a transplant soon or it’s back to hemodialysis.

What do people expect out of life? I think most would have “pursuit of happiness” as a goal. The typical middle-class American life is getting a good job, starting a family, and live an active life. With kidney failure, two of those things are now out of reach for me. I’ve been trying to ignore being single and sick but with the latest doctor’s visit, it’s hard not to think about it. What if this transplant attempt doesn’t work out? What if the future is more hemodialysis? There are a lot of side symptoms that come along with kidney failure. What if things get worse everywhere? At what point is life not worth living?

It’s a lot of work to set up the cycler every night. A few nights ago, I was close to passing out from fatigue while setting up. My abdomen is always sore from overfill and now that I’m down to my dry weight, my legs cramp all the time. Why suffer through this if m going to die soon anyway?

But if I don’t expect anything, then life on dialysis is still tolerable. I don’t have to travel. There are lots of single people. There are more painful diseases side effects from dialysis. Then there’s always the hope for a transplant. I guess it all comes down to expectations.

It’s Sunday night again. Another week of exhausting work and falling asleep driving home.

Good news first. The meeting at UCLA went well. We met with four people: nephrologist, social worker, transplant nutritionist, and my case coordinator. The most important was the meeting with the doctor since he/she determines whether I am still healthy enough for a transplant. I think that went well; I need to get a heart stress test and possibly change one of my medications. The other meetings were more informational and for them to update their records. Now it’s up to my friend/donor to see if he passes the medical tests in a few days.

The bad news. I also had a regular appointment with my nephrologist. For the past few blood tests, my phosphorus and creatinine levels have been super high. This points to me not getting enough cleaning with peritoneal dialysis since those numbers were in check while on hemodialysis. The numbers are so high that my nephrologist thinks that PD may not work for me and I will have to go back to hemodialysis. We are going to add another hour(!) to my nightly cycle and run 24 hour manual exchanges on weekends for a few months to see if this latest live donor attempt works out. If not, then possible another surgery and back to dialysis clinics.

Just when you think things cannot get worse, life surprises you.

Hope it works out this time.

I work pretty far away from work. My commute on average is 2.5 to 3 hours each day, depending on the time and day of the week. This is one of the factors limiting how long I can stay on the cycler overnight. I believe my nephrologist wants to push me to 9.5 to 10 hours/day which would basically reduce my “free” time to nil on weekdays.

Anyway, about 3 years ago, I stopped carpooling with a coworker so I either needed to find another person to commute with, or get a EV/plug-in-hybrid for the HOV sticker. I had several deposits for a Tesla Model 3 but could not wait so I ended up with a Model S 75. The car has been great; AutoPilot really takes the stress away from stop-and-go driving on the freeway.

However, one side effect of AutoPilot is that you actually worry less about falling asleep since the car can 80%-90% drive itself. Of course, the last 10% is super-worrisome as the car does not recognize traffic signals or stop signs, but it’s been fine so far. My “record” of nodding off in the car was about 20 miles. I was driving on the 22 Freeway and I blanked out. Next thing I knew, I opened my eyes and we were in Yorba Linda, on the 91 East. It took a few moments to recognize where I was… not good.

Today, I tried drinking a large cup of coffee on the way home from work. I’m not normally a coffee drinker. I guess it worked since I was wide awake the entire time… and all night afterwards.

This was the second weekend in a row that I was unable to eat. I’m not sure if it’s the dialysis or some medication that is causing the constant nausea and vomiting but I’m down to 98.5 kgs, which is about 25 lbs less than 3 weeks ago.

I guess dialysis has been relatively easy for me until now. I was able to work from home twice a week while on hemodialysis and PD has been okay until recently. This reinforces the fact that dialysis is not a cure; it’s barely keeping me alive waiting for a transplant.

After waiting a few hours, mostly spent warming up the bag of solution for manual exchange, the cycler started working again. Maybe the machine can’t stay on for too long after the cycle ends?

Baxter ended up calling/texting me at about 6pm Sunday night to arrange delivery. Even though the cycler started working again, I thought it was safer to replace the unit in case it falls again. The replacement cycler is also “pre-owned”. My PD nurse said these were old models; the newer model alarms too much for my nephrologist to recommend.

After waiting 30+ minutes on hold, Baxter said the cycler is having a software issue and would need to be replaced. Since it was Sunday tomorrow, they don’t know when I will be able to get a replacement. In the meantime, I’m supposed to do manual fluid changes but I don’t have enough solution. Not sure what I’m going to do. Hopefully my nurse has some extra manual solution bags to give me.

I got a call from UCLA transplant center Friday saying that my friend was accepted as a donor and they are starting all the organ typing and matching process. This is a good thing but the same friend was rejected (or at least put on hold) before so I’m not celebrating yet. Transplants are difficult; nothing is final until the kidney is in and working. I probably need to make a trip to UCLA next week to renew my blood test. My friend was a 3/6 antigen match before… hope nothing has changed too much.

More on transplants and blood types.

https://www.kidney.org/atoz/content/incompatible-blood-types-and-paired-exchange-programs

During some time last week, my weight went down to 100.0 kgs. I can’t remember the last time I weighed under 100 kgs. Granted, this time it’s all excess fluid. I’ve not been eating too much so my weight has been consistently around 102-103 kgs. I think I want to get down to 80 kgs so another 45 lbs to go.

I have a fancy FitBit Wifi scale that logs all weight samples (plus fat %). This is the log from the app.

So the second test came back at 1.71 which barely clears dialysis adequacy. I also missed one urine collection so there was a bit of fudging on the numbers. The conclusion was that I’m ok for now but may need to increase dialysis next month. The higher value was also from using all 2.5% solution so if I mix concentrations, the clearance is less.

This weekend, I been feeling tired and nauseous. If I cough deeply, it would trigger a bout of vomiting. Needless to say, I haven’t been able to eat for a few days and my weight is way down. A few weeks ago, I was as high as 110 kg. Today, I’m down to about 101.5 kg which is almost 20 lbs. It’s all fluid of course… the swelling in my face and legs are way down. My only fear is that using all green solution will pull too much water out and I start cramping.

Kt/V is a measurement of dialysis treatment adequacy. When I was on hemodialysis, they never told me my number so I assumed I was getting adequate treatment. For PD, the minimal Kt/V value is 1.7. When I started PD, the first measurement came back at 1.68. Since I was so pressed for time, we decided to add the midday drain to my treatment which brought my Kt/V to about 2.0. This was good. However, my natural urine output has dropped consistently over the past few months so the reading from last week came back at 1.53, much too low. We did another measurement today to make sure but I think it won’t be much different.

Not sure what to do at this point. PD nurse gave me three options:

• Increase the volume of each cycle (currently 2400 mL)
• Increase treatment time to 9.5 or 10 hours
• Change to the 7.5% icodextrin solution for the manual fill; I would need to leave this in all day

I have an appointment with my nephrologist this week. We’ll see what she recommends.

The midday drain was pink again; I think it’s darker than last time. It was a very difficult night last night. I woke up many times feeling full and even threw up once. Maybe it’s related to the internal bleeding.

Another artificial kidney research program

There doesn’t seem to be any updates on their website. There was a news article in July that claimed Vanderbuilt doctors have created an artificial kidney but still need $11 million dollars.

Healio.com

Well, that’s not good. The only “way out” for dialysis patients is a transplant or death. The article says only ~1/8 of patients at for-profit facilities are on the transplant list and very few receive a transplant. I’ve heard bad things about DaVita from nurses that worked there before. I’m glad both my dialysis clinics were non-profit and seem to have better service. They are pretty expensive for patients with commercial insurance.

This is how I feel in groups. Last Thursday in cell group, the conversation over dinner was mostly about raising children, from new babies to middle school kids. A year ago, the group was about 1/2 singles and 1/2 married men. Now, everyone has gotten married except me. I’ve tried dating a few years ago but now, with CKD and dialysis, there’s zero chance I’d meet someone that will put up with a chronic disease.

Likewise, summer is the time for vacations and travel. Many coworkers are out of the office. Every Monday, people would talk about their weekend trips while I’m usually stuck at home exhausted and tied to the cycler.