A lot has happened since last Monday. It’s now Monday morning at 4:20am and the past week has been very eventful. I did have a heart attack Sunday night and I ended up needing an emergency heart bypass surgery. The surgeon performed four CABGs or Coronary Artery Bypass Graft on me, replacing arteries in my heart with veins from my leg. This is your classic open heart surgery scenario where they saw through your sternum and crack open your rib cage. I now have about two months of healing to do with no work or driving allowed.

They also did TMR or Transmyocardial Laser Revascularization while inside, drilling little hole in my heart with a laser. Overall it took seven hours for all the procedures and I heard everything went well.

Here is a summary of each day in the hospital so far:

Monday, November 11th

• Went to St. Joseph hospital ER
• Was admitted to hospital for observation with heart in arterial fibrillation
• Troponin levels at 4.5; normal is 0.00 to 0.40

Tuesday, November 12th

• Tropinone levels at 11 indicating heart tissue damage from heart attack
• Emergency angiogram performed and found four badly blocked arteries
• Bypass surgery scheduled for Thursday

Wednesday, November 13th

• Since PD wasn’t working for me anymore, we decided to have another surgery to put in a catheter for hemodialysis; I’ve had one installed before so this was my third dialysis catheter in six months and more holes in my chest
• Catheter in and starting hemodialysis again; a real PITA when you can’t drive anymore
• Threw up when they give me too many blood pressure drugs and my bp dropped to 80/40
• Having major doubts regarding doing surgery, I.e., maybe just fading away would be easier on everyone (more later); brothers from small group visits me in DSU

Thursday, November 14th

• Completely shaved in bed by nurses in prep for open heart surgery; only left armpits and top of head unshaved
• senior pastor from my parent’s Church prays over me in Chinese; read a passage from Isaiah 50, will need to check out later
• Seven hour surgery to do a couple of things to my heart so it’s not broken anymore; beginning of new life

Friday, November 15th

• Wake up at 4am from surgery and breathing tube removed
• Recovering in ICU with blood and fluids draining from chest cavity
• Tried walking and got all dizzy and nauseous; threw up again

Saturday, November 16th

• Moved out of ICU and into cardiac telemetry ward
• Chest tubes removed
• Started eating without throwing up again thought food selection choices are very limited (renal and cardiac)

Sunday, November 17th

• Healing under observation; vitals check every 3 hours so no sleep for extended periods of time
• Sore everywhere, especially when coughing; feels like chest going to split open; also lots of pain in never used back muscles
• Lots of visitors and time to contemplate meaning of this week in God’s Kingdom: why me, where was God in all this, what about grace and healing, what am I going to do with my new life?

ER room 7 at St. Joseph hospital

I went to a previously scheduled appointment with my PD nurse Monday morning. I felt fine, even with my heart beat still running at 150 bps. I was actually ready to go back to work right after the appointment.

My nephrologist was rounding at the clinic so she had a listen and suggested I go to the ER. I had originally objected but she was persistent. So I went and sat almost seven hours in that room.

Heart rate is back to “normal” after about 3 hours. I was basically lying down all that time, out-of-breath and dizzy. I really thought I was having a heart attack or something and I was going to die without finding out if the latest transplant process is preceding. Add to the chaos, the cycler was acting up. My nurse wanted a sample of the used dialysis solution but with the extra midday fill, the 15 L drain bag is not big enough. He gave me a Y-adapter to attach two bags but I guess it was too much air for the cycler to push during the priming cycle. It kept giving me an error, even after I changed out one solution bag and the tubing set. Finally I removed the adapter and the second drain bag and everything worked, but for two hours I was trying to fix this while trying not to pass out from low blood pressure and 150 bps heart rate.

Again, just when you think things can’t get worse, something new and terrible will come and surprise you.

I’m not even 100% sure how I feel much less what to write but I’m getting more and more bitter everyday, especially with the news that I may need to return to hemodialysis. When I walk by people complaining about random stuff at work, my first thought is, “Well, at least you have working kidneys.” I hate that I have these thoughts.

You look back in your life and think, “I must have impacted more than 2 people positively.” I used to donate blood pretty regularly and signed up as a bone marrow donor. I definitively would donate a kidney to a family member but really don’t know how I would react to each acquaintance.

For example, my sister is going to a large family reunion in Canada next week. I would go if I could travel. I’m pretty sure someone will ask where I am. Sure it’s pretty lame to ask for a kidney donation so I can travel; but what about to stay alive? What if I had died and one out of the 40 relatives at the reunion could have saved me with a donation?

One of my church cell group members volunteered to donate awhile ago. He’s the wrong blood type so I didn’t pursue it. I was also in shock that a non-family member would think about volunteering. But he’s the only one at a church of 800+. There has been many prayer sessions with the entire congregation, and each time I go, people come up to me to say they will pray for me. I’m sure they are all very sincere and believe that their prayers will do something but the cynical side of me thinks that “prayer is cheap.” I’m guilty of this too. I sometimes pray for things in situations where I can actually do something to help but decided it wasn’t worth the effort, probably nothing a large as an organ donation. But still, part of the reason I’ve stopped going to church is that I have to update everyone that I see in return for some well wishes and promise of prayer.

Sigh… I know donating a kidney is a BIG DEAL. I’m already surprised my high-school friend has been so persistent in donating. Of course there are no expectations; how do you ask or guilt someone into giving you an organ? But slowly I’m accepting that I may end up dying in a crowd of family of friends that basically is doing nothing.

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.