2020 (updated)

Ugh, the last episode ended only two days ago and it’s starting up again in the other foot. I can feel the stabbing pain now on the insole of my right foot. Seriously, the pain just stopped two days ago in my left foot and it’s back already. I thought I was lucky that that pain stayed away for many weeks. I want to go out and walk for a bit but the blister in my right foot and this low level shortness-of-breath is making things difficult.

Speaking of the blister, it was still bleeding/leaking this morning, I’ve been using about four layers of gauze but it’s seeping through all of that every 8-10 hours. I want to switch to an island dressing that is adhesive but not too absorbent (Telfa), but worried that the fluids will leak out everything in my socks/shoes.

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Updated: 7/27/2020

Crap! It looks like my left foot is acting up too, even while the pain is getting worse in my right foot. This is my worst case scenario, that both feet are experiencing neuropathy pain at the same time. It even appears that there are two pain sites in my left foot so I’m really getting three sharp jabs instead of just one. Great!

I just took two more Tylenol pills. I don’t think there is any way i can sleep tonight. Since all the pain sites are pretty recent, the pain intensity is just going to get worse.

Quarantine Haircut

I’ve been going to the same hairdresser (he’s too expensive to be a “barber”) for the past ~20 years. His salon is in Irvine so the rent is probably not cheap, and currently he charges $25 for a haircut, and it comes with a scalp-massage shampoo. The last cut I got was in February. I usually go every 3-4 months and have him cut it short. When hair salons were open for a few weeks, I didn’t go back to get a haircut and now we’re all shut down again.

When we were growing up, my dad used to cut my hair. He recently bought a pair of hair clippers and still has some barber scissors from before. Today, he sat me down and spent about 15-20 minutes cutting my hair. It came out ok. Not as short as my guy would cut but since I don’t have much hair anyway, you couldn’t mess up that much.

Saturate OC

I’ve been a Christian for almost 30 years and have attended and served in many churches. These people on the beach seem totally crazy to me. I really don’t understand their reasoning or justification for doing this. We’re in the middle of a super infectious pandemic where people are dying daily. I’m willing to bet that these idiots are one of the main reasons the pandemic is out-of-control in Orange County.

Our church is not a participant in this. Sadly, I recognize some of the church “partners” on their website (Rock Harbor, Harvest). Our church did open up pretty quickly on Memorial Day weekend but shut down again per the governor’s orders. Do these people think they’re being oppressed or something? Can’t they worship from home? People are going to get sick and die from this. Do they think God is going to protect them from their own stupidity? Ugh, normal people are now going to blame Christians for spreading the virus. I’m Chinese and Christian… I guess that’s two strikes for me.

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There are countless news stories about some COVID-19 denier getting sick, almost die, and then warn people to be careful and practice social distancing. Is that what it’s going to take to stop these idiots? Having family members or themselves get sick and possibly die? I wonder if they will get vaccinated once an effective vaccine is found.

Transplant Update

I just got a text from my sister saying that UCLA transplant center has received all the files and the image CD, and the donor committee will meet on Monday, August 3rd. It’s strange that the quality of the next 10-15 years of my life will depend on a few people meeting in a conference room in Westwood.

Life was already pretty depressing before but now it’s even worse with COVID-19. Not just because everything is shut down, but the uncertainty of symptoms if infected is actually pretty scary. Most people are asymptomatic or show mild symptoms, but you see news stories of normally healthy people die just days after being infected. If you can’t assess risk, then the smart thing to do is to be more cautious. I actually think there will be more of an infection risk post-transplant surgery due to all the drugs but I got to do it… these dialysis sessions is killing me slowly.

Another Blood Blister

Sigh. I saw a tiny blister on the bottom of my foot yesterday. By tiny, it was less than 1.0 x 0.5 cm. I was thinking I should pop it to drain the tiny bit of fluid out before it gets worse. Well, I guess my habit of walking on the treadmill barefoot wasn’t good for it since it seemed to grow to about an inch round and popped spectacularly today. I didn’t notice anything until I saw bloody spots on the kitchen floor. I think what happened was that I managed to pop it when I stood in the dining room. The blister is on the outside bottom of my foot. There was a large puddle of blood on the wooden floor, and lots of blood spray on the wall about a couple of inches high. I was just glad that it didn’t pop on the carpet; that would have been a mess. I got some wet wipes and cleaned everything up. I wrapped the would area with gauze/stretch bandage/tubular net dressing but it bled through in about 30 minutes. I’m not sure why it’s bleeding so much; maybe because it’s on the bottom of my foot instead of on the side like the last blister.

COVID-19 @Work 7/23/2020

The update today from work has the number at 92 in our office. Hopefully California has hit it’s peak in number of new daily cases and people are getting the message to socially distance themselves. I’m referring to this chart from the Orange County COVID-19 Dashboard:

There appears to be a definite drop off in the daily reported number of cases since July. Hopefully it’s not due to the new reporting system mandated by the White House.

However, looking at this chart, it seems there is a huge fall off in the number of tests reported. Is it because less people are testing because less people have symptoms? Without knowing the criteria for testing and reporting, it’s hard to make sense of all the data. I wish there was a summary dashboard with a simple stoplight with red = stay home, yellow = exercise caution and social distancing, and green = mostly safe, plus an up/down arrow indicating if things are getting better or worse.

Peripherial Neuropathy 7/23/2020

I’m in the middle of a neuropathy attack now. It started near the end of the dialysis session. The pain site is in the sole of my left foot, near the center of the foot. Of course, I can’t seem to do anything to affect it. Neither of the massagers do anything, and even walking did not help. It started as a constant dull pain, but has progressed to an intense stabbing pain that lasts about 5 seconds per attack and varies between 20 seconds to a minute between each stab. I’ve taken four Tylenol pills for a total of 2000 mg of acetaminophen but it hasn’t helped a bit. I’ve also been trying to sleep it off since 11:00 am (it’s now 5:30 pm) but have been unable to fall asleep due to the pain. It doesn’t feel like it’s subsiding so I guess I have to wait it out. Usually these attacks last about 24 hours. This probably means no sleep tonight either. Ugh.

Sleep Update 7/20/2020

Last two months have been terrible for sleeping. Not sure if it was the a-fib or new medication but I was hardly getting any sleep at night while taking a lot of daytime naps. This morning, I finally got some sleep that was recordable by Fitbit. It was also the longest I’ve slept in weeks.

*Fitbit gave this a sleep score of 64 (Fair)*

If you add up all the sleep times, this was about 5 hours and 16 minutes of sleep. Here is a longer trend:

It definitely seems to be increasing over time. However, I had a-fib during most of May and the heart beat was too fast or shallow for Fitbit to pick up. I think I slept more than three hours/day if you add up all the naps.

Multac (dronedarone)

Back when my a-fib started, my regular cardiologist prescribed me to take 400 mg of Multac twice a day. It’s an anti-arrhythmia medication similar to amiodarone (I guess they all have the -darone ending) but with less side effects. Here’ some more info from their website.

What are possible serious side effects from taking MULTAQ?

MULTAQ may cause serious side effects including slowed heartbeat, inflammation of the lungs (including scarring and thickening), low potassium and magnesium levels in your blood, and changes in kidney function blood tests.

What are the most common side effects?

The most common side effects when taking MULTAQ include stomach problems such as diarrhea, nausea, vomiting, stomach area pain, and indigestion; feeling tired and weak; skin problems such as redness, rash, and itching. Tell your doctor about any side effect that bothers you or that does not go away.

I think I was experiencing some of the side effects while taking Multec. For sure I was vomiting more often. It was mailing at meal times but lots of fool smell or taste would trigger a reflex reaction. I think at one point I was throwing up 4x in one week. I also think my slower than normal heartbeat post-ablation is partially due to the Multac as well. Before a-fib, my heart rate was in the mid- to upper-50’s. With ablation + Multac, I was seeing high 40’s and low 50’s. Now that I’ve stopped taking Multec, heart rate seems to be a bit higher and I’m throwing up a lot less. However, if it’s like amiodarone, the half-life of the drug may be pretty long, which means some of the effects will linger for weeks.

*You can see the trend line starting to rise when I stopped taking Multac a week ago.*

Face Mask Policy

I just read that Walmart, Kroger, Target, and other large retail chains are going to require masks for customers at their stores nationwide. Until now, each store has followed the local county-level rules for mask usage. I think this is a no-brainer. It’s much easier to tell everyone to wear a mask than to track requirements across 6,000+ stores for Walmart. Seriously, there is no downside to wearing a mask. I really don’t get the mentality of those refusing to wear a mask. Are they the same people that don’t believe in vaccines and motorcycle helmets? Will they reject a COVID-19 vaccine when it becomes available?

I went to the local Albertson’s to pick up some medication from the pharmacy and some groceries. This is in the midst of a high infection area in Orange County, and everyone, with no exceptions, was wearing a mask. They also had employees sanitizing shopping carts and directing traffic at checkout to maintain social distancing. I believe they won’t let you in without a mask, though not sure if it’s a national policy or if they are following local guidelines.

COVID-19 Cases in Orange County

Found this map/infographic on r/orangecounty on Reddit. Apparently, the data is from here. So both my house and the dialysis center is in the City of Orange, which has one of the highest case count per 10,000 residents at 94.4.

*https://old.reddit.com/r/orangecounty/comments/htu9v4/charting_oc/*

Here is a map of median household income in Orange County.

*https://statisticalatlas.com/county/California/Orange-County/Household-Income*

There seems to be a rough correlation between case rate and median income. As expected, comments on the Reddit thread blames income inequality. Basically poorer people live in denser housing and can’t work from home. However, South County seems to be where all the anti-mask protests are taking place yet infection rates are lower then North County.

Questions:

What is the main driver of COVID-19 infections? Are people getting sick at work from co-workers? At home from family members? At extra-curricular gatherings from strangers?
Why would there be a spike in cases in early June? Is it restaurant openings? Church services? Gathering at beaches and parks?
Is the spike in cases uniform across all cities or also related to household income? Why or why not?
How is the case rate related to mask utilization rate?

Sure, if you live with more people, the infection risk goes up, especially if family members have to work or are not socially distancing when out. However, my company’s HR department claims that all COVID-19 cases at work are from non-work contacts. In the end, I’m trying to judge the risk of living in a dark red area. Should I go food shopping in Irvine instead? Without tracing the source of each case, it’s hard to manage risk.

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I just noticed the highest cumulative age group for number of cases is 25-34. Is that because that’s the group with the most population or is the case rate also the highest? Did that change over time, i.e., since the spike, or was that always the case? If it was a recent development, since we were told that COVID-19 initially affected older and immuno-compromised people, then being poor doesn’t explain the numbers. It’s likely that younger people are ignoring precautions and going out post Memorial Day. Maybe Santa Ana and Anaheim has a higher percentage of younger people.

Lab Results 7/16/2020

Sigh. Got some of this month’s lab results back. I was hoping that the Urea Reduction Ratio (URR) would be higher so I can get the clinic to cut my time back down but it came in at 64.0%. The minimum is actually 65%. I think I’m close enough that they won’t increase the time again but for sure it won’t decrease this month so I’m stuck at four hours.

The only other number worth noting is the Phosphorus results. Last month, it came in high at 5.9 mg/dL. I believe the upper limit is 5.5. This month, the result was 4.6 mg/dL, which is much lower. There seems to be a lot of variability in the test results. For some reason, I didn’t see a line for Potassium but that number has been pretty stable for a few months.

They also did an Hemoglobin A1C test this time. I’ve been off all diabetic medication to prevent another episode of hypoglycemia. Most of my readings in the morning has been ~80 mg/dL so the blood sugar seems to be under control. The A1C reading was 5.5%, which is normal.

Neuropathy + Shortness of Breath

Double whammy!

I’m in the midst of a pretty serious neuropathy attack. This time it’s the inside of my left foot. The jabbing pain is pretty intense that I can’t even sit up straight when the pain hits. It’s coming anywhere from 15 to 30 second intervals.

Usually the only thing that helps is a bit of walking, either outside, on the treadmill, or even just wandering in the upstairs hallway. Well, due to some heart weirdness, I’m running out of breath really fast. I went walking on Saturday for a short 1/3 mile and had to sit on the curb twice, severely out of breath. Today, even walking slowly in the hallway tired me out.

OMG life sucks.

More Despair

I feel like I’m losing control. I’m sitting in dialysis and everyone that came in at the same time this morning are done except me. At 4 hours, I think I’m here the longest. The nurse is also harassing me to call the vascular surgeon about my fistula which means more surgery. Without a donor in the pipeline, there is no way out of my nightmare.

I just want all this to go away.

Post Ablation Update

So (knock on wood) my heart rate is still pretty stable at 60 bpm after 36 hours. However, I haven’t been able to eat anything substantial. Yesterday, I coughed a bit too hard and threw up before eating anything for dinner. It was pretty violent and the regurgitated stomach acid burned my throat more. This morning, I thought I would make a ham/egg breakfast sandwich but that didn’t work out. The ham from Costco was very salty even though it tasted fine a few days ago. I ended up just putting a scrambled/fried egg in the sandwich but that made me vomit too. I think this time it was more of the bread scratching my sore throat. I’ve been afraid of eating anything all day. All I’ve had to eat for the past two days was one quarter of a terrible turkey sandwich, a small bowl of chicken noodle soup (that was basically all celery), and one bottle of Ensure. Only problem is that due to my dry/sore throat, I’ve been sipping water and swallowing ice chips both days so now I think I’m close to 3.0 kg over dialysis dry weight. I feel like I can’t even eat anything even if I can keep it down.

I feel like all the blog posts are complaints nowadays but life is really really not enjoyable at all.

Neuropathy Pain 6/9/2020

I can’t get a break. The first night that my heartbeat has been “normal” in several weeks and my neuropathy pain starts acting up. I now have a stabbing pain in my left big toe that just started. I took two Tylenol but probably won’t help. I thought I would be able to get some sleep but with the sharp pain and super sore/dry throat from intubation, I think it will be another long sleepless night.

I just want to be symptom free for one night.

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Every time I have neuropathy pain, my mom would tell me her leg hurts and show me her swollen ankle. Every. Single. Time. I think she has arthritis joint issues so she rubs all sorts of ointments on it and it seems to help. That means each time I have excruciating pain in my feet, she want to rub her ointment on it. I’ve told her it doesn’t help but it seems to go in one ear and out the other. Last night, she rubbed some cannabis based ointment on my left toe and the pain was gone/minimized for about four hours but now it’s back with a vengeance. It’s hurting much more than before and I’ve rubbed ointment all over the area four times. Not helping.

Heart Rate Post-Ablation

It’s been about 12 hours since I woke up from surgery and heart rate has been pretty stable. Of courses, it was like this after the cardioversion and that eventually failed. Here is the Fitbit tracker data:

The big gap Sunday to Monday is when the tracker was charging. The big gap today was because I left the tracker at home during the hospital visit.

“Normal” EKG

Finally, after two months I finally get a “normal” reading on my Kardia mobile EKG. Heart rate is at 63 bpm.

Lab Results 6/4/2020

Surprisingly, the labs I got for my cardiac ablation procedure tomorrow showed up in the St. Joseph online portal, even though I had the labs done at St. Jude Hospital in Fullerton. I guess since they’re part of the same hospital network (Providence), all the labs show up together. Anyway, I tested negative again for COVID-19. This time, they swabbed both nostrils and held the swab for 5 seconds on each side. Ouch.

I also had a basic metabolic panel and CBC w/differential done. The surprising item was my creatinine levels. It’s still really high but the result came back at 4.9 mg/dL, which corresponds to a eGFR of 13. The last time my creatinine was that low was back in 2016, a year before I started dialysis. Here is some ancient history:

Test Date	Creatinine (mg/dL)	eGFR
3/25/2015	1.84	43
4/29/2015	2.0	39
6/3/2015	2.7	27
7/6/2015	2.52	29
8/9/2015	3.42	20
8/14/2015	3.65	19
8/24/2015	2.74	26
10/19/2015	3.08	23
11/9/2015	3.13	22
1/11/2016	3.26	21
2/14/2016	3.32	21
5/17/2016	4.5	14
7/8/2016	4.72	14
8/18/2016	5.09	12
8/28/2016	5.04	13
9/29/2016	5.55	11

Yeah, I was basically getting labs done monthly or more. It was about this time in mid-2016 that I started the transplant listing process at St. Joseph, then transferred to UCLA.

I’m not sure what the numbers represent for the latest test. If I was still at 13 eGFR, I could probably stay off dialysis but since my urine output is basically still zero, I won’t be able to get rid of excess fluids. I also don’t know if the readings are a measurement of dialysis effectiveness, though most of my recent readings have been in the 5-9 range. I think I asked the nephrologist how I would know if my kidneys healed themselves and the feeling I got was that it never happens for chronic kidney failure.

Fatigue

I hope this bout of fatigue is related to my heart arrhythmia, and it gets fixed during Tuesday’s surgery. I still can’t sleep at night well and super tired all day. I got up to eat some breakfast around 10:00 am and was back in bed by 11:00 am. I kinda listened to our church’s sermon online but drifted in/out of sleep for the next six hours. Each time I sat up, it would take five minutes to shake the tiredness a bit but it would always come back. Now I need to try to eat something and my stomach is feeling weird again. I hope I don’t throw up (again).