FPS Nausea

Since everyone is stuck at home, other than sleeping, I need to find something to pass the time. I’ve watched a lot of streaming videos and stuff I download. Last week, I watched the entire four seasons of Food Wars, a Japanese anime series about a cooking school. Also watched a lot of YouTube videos.

I’ave also been playing computer games. I bought Borderlands 3 recently, which was 72 GB and took over two days to download. It’s a FPS (first person shooter) and I’ve purchased all the titles in the series. Last night, after playing for about ah hours, I suddenly felt very nauseous. I would occasionally get dizzy when playing FPS but this was a lot worse. I ended vomiting up a bunch of stomach acid with bits of vegetables from dinner. Not sure if it was an one time thing or just something to get used to from now on.

Mahjong Cancelled

My sister asked us over to her house to play Mahjong in this time of social distancing. We originally got the time confused and showed up to her house last night, only to come back 15 minutes later. This morning, my parents reconsidered and decided to stay home. I think they were worried that my nieces could pick up the virus (they’re 13 and 10), not show any symptoms, then pass it to them and me. All of us are at high-risk due to age or medical conditions.

So for an tire week, I only left the house to go to dialysis plus the short visit to my sister’s house in error. This week looks about the same. Sad.

Empty Superchargers

With the stay-at-home orders by the state and county, Tesla Superchargers are pretty empty. I usually get out of church service around this time (11:00 am Sunday) and local Superchargers are typically full. Here’s the status from my phone app:

I’ve been keeping my car charged to 90% overnight in case there’s an emergency and the power gets cut. Otherwise I’d be down in Main Place Mall charging my car for free.

Witness Subpoena

I’m supposed to show up at a Los Angeles County Courthouse as a witness for a criminal trial. It’s related to a fraud case at work. The case is still on the preliminary hearing phase after 18 months since it kept getting delayed. I’ve been to the courtroom several times just to have the case pushed out another month.

With all the COVID-19 related closures and stay-at-home orders, the court seems to be still open. Since this is a preliminary hearing, and 20 cases are heard each day, there’s easily over 100 people walking in and out of the courtroom. Since Monday, I’ve been calling the court and the District Attorney’s office trying to get some guidance on what to do but no one has called me back. I have several medical conditions that puts me in the high risk group: heart disease, diabetes, and dialysis. It’s going to be super risky for me to go and sit in the courtroom for several hours.

I told my boss about this in our staff meeting Wednesday and I received emails from several people in Legal. One of our corporate attorneys said that under no circumstance should I attend the hearing. It’s not worth the risk even thought I was issued a subpoena. I’m still a bit worried since getting arrested and thrown in jail is probably even more risky than going to the courtroom. Let’s hope that the judge can proceed with the case without me being there since I passed all the evidence to a detective a long time ago.

Telechurch (updated)

For our church small group meeting yesterday, we were told not to physically meet up but to use online meeting software. Initially we tried to use Google Hangouts but no one liked the screen layout. One of the members had a Zoom account so we switched to a Zoom meeting. There were 12 people on the call at one point and it went pretty smoothly.

Initially my church was still holding services but with both the OC and California orders to stay home, everything is now online. They’re streaming sermons on Sundays and most other gatherings are cancelled. My parents’ church is also dark and they’re having an online small group meeting later today as well. Weird seeing a bunch of senior citizens with their iPads attending a virtual meeting.

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I watched our Sunday Service online today. I thought the staff was still going to meet at church but the pastor gave a sermon from his house. Worship was one guy on a guitar. Overall, it was pretty short; the entire program only lasted an hour. Later, my small group leader said the sermon was pre-recorded earlier. At my parents’ church and my old church in the South Bay, even through they only have about a hundred people, they live broadcasted from the church.

Telemedicine

I had a three month follow-up appointment with my cardiologist today. Due to the whole COVID-19 thing, they switched it to a remote appointment. I originally thought it was going to be a phone call but they set up a Zoom video meeting instead. I think it went well though it was hard to show the doctor my surgery scar. I have more appointments with different doctors next week and I know one of them has been switched to Zoom as well.

Walking 3/18/2020

I was going to continue cardiac rehab today but decided to call first to make sure they’re still open. I left a voice mail and the front desk person called me back to say they are still open, but only letting in six patients at a time, and you have to wear gloves. However, five minutes later she calls me again to say they’ve decided to close the facilities indefinitely. I knew this would happen sooner than later, which also puts an indefinite hold on my transplant.

The neuropathy pain also increased in intensity and frequency so that I’m almost in constant pain. In the past, sometimes going out and walking helps with pain, possibly by increasing circulation. I ended up going out twice for short walks. First walk was around 1:00 pm and I walked 1.07 miles at a pace of 23’14”. I just got back from second walk at 8:40 pm and I walked 0.71 miles at a pace of 23’20”. It was pretty dark and cold out, and absolutely no cars or other people. It was eerily quiet. I know this doesn’t count for UCLA toward cardiac rehab but I need to keep exercising. Since I’m not “gathering” with anyone, I think it’s okay for me to leave the house with minimal risk.

The pain pretty much goes away while walking. During the first walk, the pain only appeared twice, and only once during the second walk. Normally, the pain would come as frequently as 20-30 seconds apart so walking does help, but only while walking. Hopefully it will go away by tomorrow morning. I can’t imagine sitting in dialysis for four hours with both the numbness and pain. Ugh!

Peripheral Neuropathy & Nerve Pain

In addition to numbness and tingling in my feet, I used to get pretty several nerve pain about one a month. Each occurrence would last about 24 hours and painful enough to prevent me from sleeping or working. The apparent location of the pain point would vary each time as well.

Since the heart surgery, the numbness and tingling seems to be much more intense than before, but the pain part has been rare. I think it only happened once or twice and I’ve been relatively pain free for the past three months. However, it seems the pain is starting up again. There’s a sharp pain that appears intermittently in my left foot. I was hoping that the nerve pain was somewhat related to my heart issues. Once the blocked arteries were bypasses, maybe the pain will go away too.

I guess not.

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I also spoke to the rounding nephrologist yesterday regarding the neuropathy. I read some articles online that correlates neuropsthy with dehydration. The only major change I can come up with between now and a few months ago is my weight loss and a lot of that is fluid removal. I’m still pretty thirsty most of the time and they keep dropping my “dry” weight at dialysis. I thought if they let me drink more and increase my weight, it may relieve some of the neuropathy. However, the doctor said she hasn’t heard of this relationship before and suggested more medication (Gabapentin) for the neuropathy.

Orange County Health Officer’s Order

Here it is. Orange County basically ordered everything shut down until March 31. I was thinking of going to work tomorrow for one day to use my desktop. I have a deliverable Friday that I doubt me any my one staff person will finish and going in to work may speed it up a bit. However, I managed to get my VPN and remote access to work so maybe I can stay home. My work is also in a different (Los Angeles) county so I wonder if the no work rule applies.

Of course there are many exceptions for essential activities. The dialysis clinic is still open so that for sure falls under essential. I don’t know if the cardiac rehab center is still open and whether I should still go and finish up, or wait two weeks. With all these social distancing orders, I’m pretty sure they’ve halted non-emergency procedures also. I think all of US society just got delayed for two weeks.

Here is a useful infographic from UCLA Health:

*Ugh, I gotta stop biting my fingernails*

Transplant Journey

For a long time, I’ve had this nagging feeling in the back of my mind that maybe I’ll never get a transplant and be stuck on permanent dialysis. I look at other people’s transplant experience and it seems so easy. Even at the Kidney Disease Support Group, the leader found out he had kidney failure, sent email out to church group, got 11 offers for donation, and even though he was 74 years old, he received a transplant pretty quickly. Likewise, several other people in the group said they were able to get a transplant shortly after going on dialysis and everything worked out fine.

Then I look back at my journey and it seems like I’m cursed or something. I wrote a long post early on about the last few years of kidney failure. Here’s a summary of transplant expectations that never came to be:

I was under monthly care of a nephrologist for three years prior do dialysis yet despite all the appointments, tests, and medication, my kidney function kept dropping from eGFR of 50 down to <10.
Signed up with transplant center at St. Joseph Hospital. Everything was going well until sister was mysteriously rejected by the social worker for non-medical reasons. She believe my sister didn’t really want to donate so she rejected her as a donor.
We then transferred our transplant wait list time to UCLA with help from a doctor friend. At UCLA, things looked great until the CT scan found a shadow in my sister’s kidney. Not willing to risk cancer, UCLA told us to wait one year. I had to start hemodialysis dialysis while we waited.
Meanwhile, my high school friend offered to donate. He turned out to be a blood type and 3/6 antigen match. UCLA rejects him due to slightly elevated blood pressure. He then spends the next few years improving his health and eating habits to lose weight and lower his blood pressure. Waiting continues…
Sister goes back to UCLA after 12 months with new scans showing no sign of cancer. Instead, UCLA asks for a kidney biopsy. During the biopsy procedure, they missed getting a tissue sample. When we asked for a second biopsy, they said no and asked us to wait another 24 months.
After about 20 months of hemodialysis, the dialysis center and nephrologist really wants me to get a fistula. Instead, I opt for peritoneal dialysis. After surgery and six months of dialysis at home, we determine PD to be a failure and return to hemodialysis. During that time, I was not getting enough dialysis and end up losing my remaining kidney function.
After persisting for several years, my friend manages to get UCLA’s approval as donor so everyone goes back for more interviews and tests. As we were scheduling the last set of tests, I go to the ER and end up with a quadruple bypass surgery, which puts my transplant on hold.
After surgery, my friend still wants to donate so UCLA said they would clear me after I complete the cardiac rehab program. I start program in mid-January and is delayed by fistula surgery. Right now, I’m only 14/24 sessions complete.
When it looks like I’m making good progress and working towards a transplant within months, coronavirus pandemic hits and everything shuts down in the US. I need to call the rehab center to see if they’re still open but with the directive to hospital to focus on respiratory emergencies, I don’t know if UCLA is even working on kidney transplants at this time. Also it doesn’t seem like the right time to start taking immunosupressive drugs required post-transplant surgery.

Along this journey, I kept feeling like a live donor transplant was always imminent. However, each time I take a step forward, some obstacle would appear and block the transplant. I was always worried about either my donor’s health or my health deteriorating before the transplant happened but who would have imagined a global pandemic halting the process? I feel like I have zero control over my future and will be stuck on dialysis the rest of my short miserable life.

Fistula: Not Ready

After hooking me up with the chest catheter, one of the techs tried to stick one needle into my fistula. He gave me some lidocaine first so I didn’t feel anything. He poked a few times and said the fistula wasn’t ready. Usually it takes 2-3 months to mature; my surgery was only ~6 weeks ago. Sometimes it can mature that fast but we’re going to wait a few weeks to try again.

He used the thinnest needle so it wasn’t that scary. Since I’m on the border on clearance, they will probably need to used a larger gauge needle eventually to increase the flow rate. Not looking forward to that unless it can shorten my session time.

Speaking of dialysis, there were a few changes due to COVID-19. Their was a person taking everyone’s temperature at the door, and they’re not letting in visitors in the dialysis clinic. Everyone is wearing a face shield and I’ve gotten my mask so maybe they found more supplies.

Fistula: Abort

I was supposed to start using my new fistula today but I checked out. I told the dialysis nurse to wait until Tuesday instead. While I was in the waiting room, two patients were talking about problems with their fistula. One patient has his completely blocked so he needs surgery. I guess I got freaked out so I’m avoiding it today.

COVID-19 3/13/2020

Today has been an interesting day. Since I didn’t go to rehab all week, I decided I need to to go this morning even though I didn’t get any sleep. I arrived at the gym at 8:00 am and there were only two patients. I guess the rain and COVID-19 is keeping everyone at home. The nurses suggested we wear disposable gloves while we exercise and they also had masks available. It was pretty weird walking on the treadmill for 30 minutes wearing purple surgical gloves. Since my palms sweat, it was also pretty gross when I took the gloves off afterwards.

*Another item that’s hard to find in stores*

Since I thought I had a meeting at 10:00 am, I drove straight to work after rehab and didn’t check my work phone. I was going to talk to my boss about working from home more since this COVID-19 pandemic is becoming more serious. When I walked into our area (there are 5000+ at our work-site), about four coworkers told me to go home right away. Turns out an employee came down on Tuesday from our Seattle office and their partner was infected with COVID-19. Yikes! Since everyone knows my medical journey, they all told me to go home. Once of them actually texted me this morning but I didn’t see the message. I spoke to my boss and he also told me to go home. He is telling our entire department to work from home next week to see if that was an isolated case, or if our building turns into an infection hot spot. I had to quickly do a few things then left for home after 45 minutes. At the same time, our CEO sent out an email message telling sick people to stay home, but the overall tone of the message seems to downplay the seriousness of the pandemic. Not helpful.

Since I was at home, I watched President Trump’s press conference at the Rose Garden this afternoon. There were a few useful facts but most of it was useless and cringy. I swear he sounds retarded when he speaks. I was also disappointed in Mike Pence; he spent most of his time kissing Trump’s ass instead of demonstrating leadership. The Q&A was also interesting. The foreign reporters seem to ask balanced questions but some American journalists were definitely out to get Trump with their passive-aggressive questions. Even at this time, everything is about politics.

We’re all going to die.

Working From Home

Since I returned to work early February after heart surgery, I’ve been only going in to the office three days a week due to dialysis. With the ramp up in COVID-19 hysteria, I think I need to talk to my boss about working from home more often, maybe only go in to the office once a week for meetings. The issue is that both me and my parents are in the high risk group, which has a much higher mortality rate. From cdc.gov:

In the past, my primary doctor and the dialysis clinic have been pretty adamant about me getting the flu shot each year. They said even regular influenza is dangerous for me being diabetic and on dialysis. This current pandemic is definitely a lot worse. I’ve been using up a lot of vacation time to cover my Tuesday/Thursday absences. Maybe it’s time to switch to 3/4 time and the corresponding 25% reduction in salary.

COVID-19 Effect

Hmm. The response to COVID-19 in the US seemed to go from 0 to 100 this week. The stock market keeps dropping and now there is a travel ban on all of Europe. My parents have some friends whose children are stuck in Italy with no way home. My church have cancelled most gatherings and switched to live streaming online. My sister cancelled her family trip to Disney World; they were supposed to meet up with my cousin’s family driving down from Toronto. No more NBA games?!

Even worse, the dialysis nutritionist told me the hospital was running out of supplies. They only have two weeks of surgical masks left. She was told not to wear a mask to save on supplies and not to freak out the patients. I think her not wearing a mask is freaking me out more. Typically for each session, they pack a bag with all the necessary supplies to connect and disconnect patients. My bag always included a surgical mask due to the infection risk of using a chest catheter. Well, there wasn’t one today, not even a manual tie-on mask. My nurse had to grab a staff mask with a plastic shield for me to use. Pretty wasteful since I don’t need the shield but it speaks volumes about the supplies shortage.

*My stash of three boxes of surgical masks from peritoneal dialysis days*

I slept a bit after dialysis today but again, I think it will be another sleepless night. It’s 1:30 am already and I’ve been “in bed” since 9:30 pm. I think I need to go to rehab tomorrow. With all my insurance problems, I really should try to finish up before the end of March. I hope they don’t shut down the cardiac rehab gym, else I’ll never get my transplant scheduled.

How Did I Get Here?

Another sleepless night. It almost 6:00 am and I’ve been unable to fall asleep. In addition to the physical issues, I can’t seem to shut my mind off to sleep. I keep thinking about and regretting the past.

There are so many thoughts swirling in my head that I can’t write coherently. I’ll have to continue this later…

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I just got hooked up for dialysis. For some reason, they’re way behind today. I had to wait about 30 minutes to get connected. They also decided to wait until Saturday to try out the fistula since today is lab day.

Back to the post. Yeah, a lot of regrets…

Divorce: I still have dreams about ex-wife all the time. I should have done more to be a better person and maybe she wouldn’t have left me. Kidney failure and dialysis would probably be easier with a support partner.
Health: For several years after the divorce, I basically ignored my health. The thought was whatever happened, it would be karma for being a bad husband. Looking back, that’s really stupid.
Dialysis: I put off a lot of decisions because I did not want an ugly fistula. That was why I switched to peritoneal dialysis, which probably made my health worse and I ended up with a fistula anyway.
Work: I was just talking to the social worker intern and realized that throughout my work career, I’ve probably worked 50-60 hours a week. Would I be in a better place if I took less stressful jobs? Also, I’m a bit lost with my new responsibilities. The fact that I only go three times a week is not helping me catch up.
Children: What would happen if my ex-wife and I had kids? Would we still be together? Would I be more motivated to take care of my health?

People sometimes ask hypothetically if you could go back in time, is there anything you would change? I have a huge list of changes I want to make and that is depressing.

Peripheral Neuropathy 3/11/2020

I think the diphenhydramine in Tylenol PM does have something to do with the increased neuropathy in my feet and legs yesterday. I only slept from 6:00 am to 7:30 am this morning so I’m super tired from basically four days of no sleep. I did go to work while skipping rehab but decided to come home early after a few meetings. I got home around 2:00 pm and slept until 6:00 pm, then again after dinner from 8:30 pm until now-ish. I still need to sleep more but at least I was able to get a few naps in.

The numbness feels like it’s subsided a bit. My feet are still numb but it’s no so unbearable like it was yesterday. I read that the half-life of diphenhydramine is about 6-12 hours so all of it should be gone within 1-2 days. Good thing it’s metabolized by the liver instead of the kidney. Otherwise I’ll never get rid of it. The breathing sounds and cough is better too so maybe that is a result of the extra medication. Problem is that I still need to find a sleep aid if I can’t use Tylenol PM.

I did not take organic chemistry in college so no idea what this means

Also, even though it feels like the numbness is better, I still don’t feel great. The vascular surgeon wants me to ask the dialysis team to start using the fistula tomorrow. I think you have to sit very still in case the needle comes out, whereas the tubing is locked to the catheter. I don’t know if I’m ready for it with the current neuropathy levels and the need to move around in my chair.

Coordination of Benefits, Part V

It’s getting serious now. My insurance just rejected my February dialysis bill for ~$33k. I still can’t get through to Medicare’s benefit coordination center; the wait time was too long last time so I need to try again tomorrow. However, I found a document on Medicare’s website that clearly states that I need to wait 3-months before beginning Medicare, and the 30-month benefits coordination starts after that date. That is why all the info I’ve received from my dialysis clinic mention the coordination period as 33-months. Now all I have to do is get my work insurance to agree and reprocess all the rejected claims.

Sleep Update 3/11/2020

It’s now 3:32 am and I’ve been trying to sleep since midnight. In my previous post, I said I will not take any Tylenol PM in case I was reacting to the diphenhydramine. I do think my coughing and breathing is better than last night. I was hearing a bubbling noise when I exhaled before but not tonight. However, the existing insomnia problem is still there. I expect to toss and turn for another three hours until 6:30 am. Then I have to decide whether to go to rehab and to work.

The last sleep I had was yesterday afternoon from 2:00 pm to 5:30 pm. My mom keeps waking me up telling me to stop napping, otherwise I won’t be able to sleep at night. The issue is that I already can’t sleep at night so I need all the extra naps.

Just Make It Stop

I don’t know how it’s possible but the numbness in my feet/legs keep getting worse. I’ve been walking in the upstairs hallway for about 30 minutes and the numbness is affecting more and more of my legs. I tried using a massage wand to massage the calf muscles and a shiatsu foot massage machine for the soles of my feet, but nothing is helping.

Today has been a terrible day. From the almost panic attack and hot flashes during dialysis, to missing several appointments due to insurance mix-up (cardiac rehab, therapist, acupuncturist), to the overwhelming numbness in my feet, this is probably one of the worst days since heart surgery. I’m trying to stay positive but right now, there’s really nothing to look forward to. I alternate between work and dialysis for six days of the week, and then lots of sleeping in on Sunday.

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So the only difference between yesterday and today is the Tylenol PM I took last night as a sleep aid. The active ingredient for the “PM” part is diphenhydramine, which is the same ingredient for Benadryl. Each caplet contains 500 mg of acetaminophen and 25 mg of diphenhydramine. I took two caplets per the instructions on the bottle. Looking at WebMD, there are many side effects to diphenhydramine. Under common side effects, it lists an increase in the thickness of lung secretions. I think I had that last night, causing me to cough a lot more. Under rare side effects, it has chest discomfort, difficulty sleeping, excessive sweating, and numbness and tingling. I know it says “rare” side effects, but those symptoms showed up or intensified suddenly last night/today. Since it didn’t help me sleep last night, I’m going to skip taking Tylenol PM to see if my breathing and numbness gets better.