Not good. It’s definitely getting a lot worse. This is probably the inevitable spike in cases from people getting together irresponsibly over Christmas and New Year. The case count went from 379 to 406 yesterday at my work site. Starting this week, HR is also letting us know where and when the infected employee was onsite. There is nothing currently in my department area but the cases are pretty much all over. I am sort of pissed off at everyone getting sick. I had to stay pretty isolated for the past nine months, but the situation has gotten worse for me (and my transplant surgery) because selfish people can’t follow public health instructions.
I believe my company is still working on getting vaccines for our workers. I don’t know if the essential business covers everyone or just those that have to work onsite. Probably 50% of the employees can work from home. It’s a race to see what designation will get me vaccinated first: essential worker, immuno-compromised (post-transplant), medical history (diabetes + heart surgery), or just being over 50 years old.
It’s been awhile since I took a walk outside due mainly to the weather. I thought the walk may be challenging since some fluid may have gotten back into my chest cavity. Everything was fine though. I walked 0.92 miles at a pace of 21’33”. I didn’t have issues with my feet or my breathing. I probably could have walked more but I wore shorts and it was getting a bit cold.
My parents got me a breakfast burrito for brunch this morning. They had to go see a dentist, and picked up food on the way home. I just weighted myself with and without the burrito. It weighs about 0.8 kg or 1.8 pounds. I guess it’s going to be breakfast, lunch, and dinner for me today.
Weird. I woke up about 30 minutes ago and couldn’t figure out if it was 1:30 am or 1:30 pm, and what day it was. My first thought was that it was Wednesday at 1:30 pm and I had missed a bunch of work meetings. I was about to text out some apologies when I thought maybe it was Tuesday afternoon. However, I did have a work meeting earlier that was at 1:00 pm Tuesday so that got me more confused. I looked at the calendar app and the icon said Wednesday the 6th, which got me more confused since I remember going to dialysis “this” morning.
Sigh… it was not until I realized that it was 1:30 am Wednesday morning did everything fall into place. All my Wednesday meetings have not occurred yet. This is a problem when you sleep when you don’t have a good sleep schedule and nap whenever you can so you’re not totally fatigued all the time. That disorienting feeling was scary though. I also realized that I’m dreaming more often, even on short naps. When you dream, it feels like you have been asleep longer but I don’t think there is a correlation. I was having a weird dream, now forgotten, which made it harder to remember that I just went to bed at around midnight.
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So I got zero sleep this morning after posting the above. I pretty much stayed up reading Reddit until 7:00 am. I know I’m going to be tired later today so I need to find time between all my work meetings for short naps. I was going to go out to get my favorite breakfast burrito but I guess I’m scared of the out-of-control pandemic surge. I’m sure the virus can’t survive a hot griddle but the chance of getting infected is not zero, and now would be a bad time to get sick. So no breakfast burrito… I just got a cup of decaf and made a PB&J sandwich for breakfast.
Why is our government so incompetent? Is it because they have a monopoly in whatever they do? There doesn’t seem to be any sense of urgency or accountability to anything that they do.
I was talking to my sister on the phone, comparing notes between our two transplant coordinators, when the topic of the COVID-19 vaccine came up. It would probably be a good idea for both of us to receive the vaccination before going into surgery since there are a lot of sick people in hospitals. Anyway, we were trying to determine when I would be vaccinated based on the “Dialysis Centers” bullet point in Tier 1A. With me on the phone, she called the Orange County Health line and actually talked to someone. However, the customer service representative (CSR) basically told her to go look at more websites, including the California Department of Public Health. My sister was also told to call 211 to get our public agency help line for more information. That turned out to be a 10 minute trip through a massive automated answering system. I gave up and said I would ask the social worker at the dialysis center, but eventually she spoke to someone and I’m actually in phase 1C, using a totally different distribution system mandated by the state. So confusing.
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Under the state system, I would be in phase 1C, which is where I would be dialysis or no dialysis.
Today was the “dialysis” day of 2021 and there was a personnel change. In the past, the dialysis techs would rotate to a different pod/unit every three months. They are still rotating but the schedule seems more random now. Anyway, my “new” tech is a younger guy that I’ve spoken to a lot before, but this is the first time he’s stuck me with dialysis needles. The first attempt was unsuccessful and very painful; he ended up calling over another tech and she was able to place the needles more accurately. It was fine but my arm did hurt for about 30 minutes at the beginning of the session. It’s about 1:30 pm now and it’s hurting again at home.
I also spoke to my nephrologist. She was there last Tuesday but had to run off before talking to me. I convinced her to raise my dry weight to 79.0 kg since my blood pressure is crashing (low) each session now. Today, I sat up near the end and it dropped to 85/58. I felt really sick and thought I was going to pass out. They stopped the fluid removal and pumped back about 250 mL of saline to try and stabilize my blood pressure. Hopefully the higher weight limit will mitigate the constant hypotension.
My nephrologist also said that it’s probably better to wait a bit on the transplant, if I get approved. She also does rounds in the main St. Joseph Hospital and she said the place is a zoo. People are waiting hours and days to get into the ER since there are no open beds in the ER nor the main hospital. She mentioned she saw OB doctors doing ER triage, which is not really ideal. Personally, she said five of her patients died from COVID this weekend; she has patients at various hospitals and facilities. The youngest was a otherwise healthy 27 year old. The dialysis nutrition also stopped by to chat and said they’re losing about a patient a day at the hospital due to COVID. I don’t know who still thinks this is all some kind of fake news but their attitude is killing people.
When I woke up this morning, my right big toe starting hurting. It wasn’t too bad having just started the cycle so I took two regular Tylenol pills and tried to sleep it off. I was pretty successful and when I finally got out of bed a few hours later, the pain didn’t come back. Fast forward to this afternoon. I took another nap after a work call and woke up again with pain in my right foot. This time it was on the inside of the foot, right under the big toe joint. Unlike this morning, this one hurt a lot more than anything I’ve experienced before. After each pain attack, my entire foot would go numb for a few seconds. I took another two Tylenol pills (PM version this time), and tried to go back to sleep. It was difficult since I just woke up, but managed to doze off for a few hours until my parents woke me up for dinner. The pain attacks were subsiding but I still experienced a few within the next few hours. It’s now 10:30 pm and I think it has finally subsided.
Again, these attacks are likely the result of diabetic nerve damage. However, having controlled my blood sugar and diabetes fairly well over the past few years, I thought there would not be any further deterioration in my condition. I understand if the body can’t heal from the damage but the nerve pain seems to keep getting worse. Maybe there is a lag in the blood sugar levels and [body system] damage?
I’m just hoping nothing reappears tomorrow morning during dialysis. It will suck even worse if I have to deal with nerve pain while sitting there for four hour5s.
We’re up to 350 362 cumulative cases at my work site. There is an Intranet page that is updated daily and I get an email summary of all the changes. I’ve been deleting the emails as I read them so I don’t have data going back that far. My first COVID @Work post was on July 8th and we had only ~60 cases. Even on December 14, only three short weeks ago, the tally was 271.
Seriously, what are the people getting sick doing? The situation seemed under control early November with pretty low case counts and vaccines approval imminent. Now cases numbers have exploded, hospitals are out of beds, and the government seems unable to distribute vaccine doses. Is it just as simple as getting together for Thanksgiving and Christmas? Are people out partying every weekend with no masks and social distancing? My life hasn’t changed in the last two months: stay home and wear a mask if I need to go out. Is this not true for everyone?
I’m looking at the hospitalization numbers for Los Angeles County and it’s depressing. I found the file through Google search; not sure how to access it directly. Anyway, as of December 31st, there are only 16 adult ICU beds free in the entire county.
It’s been over a year since my open heart surgery and I still have problem sleeping regular hours. It seemed to have gotten better for a few months but it is getting worse again. I am more tired after dialysis, which means more naps in the afternoon, and leads to not being able to sleep at night.
I went to bed really early today since I was super fatigued again, after sleeping most of yesterday and today. It was something like 7:30 pm but I woke up a couple of times. I finally got up at around midnight, and have been trying to fall back asleep again. It’s now 2:30 am. The problem with the naps is that they are short, usually one to two hours. I would get up for awhile then need to sleep again. Fortunately, I’m working from home and can work around my crazy nap schedule. If I had to drive to work everyday, I don’t know how I would survive.
Related to my last weight post, I’m still at 83.0 kg right now. Some of the excess fluid must have overflowed into my chest cavity. Breathing is slightly more difficult than a few weeks ago, but nowhere near as bad as it was a few months ago. However, it’s just enough to keep me from sleeping at night.
I think I’ll just stay up for the next two hours. Since I cannot eat breakfast in case I put on more weight, I’ll probably just take a long shower right before I haver to leave for dialysis.
Since the COVID-19 vaccine became available, I have not heard anything about the distribution schedule for Orange County. Through Reddit, I found an official site with some information.
However, like many government websites, it has a lot of text but not that much useful information. The question everyone is asking is when they will be eligible to get the vaccine, and basically we are told that they are still developing guidelines. Huh? The vaccine has been available for weeks. I know supply is scarce right now, but at least have a plan in place. What if a large quantity of vaccine suddenly becomes available? Are they going to sit on their hands or scramble and throw a crude plan together overnight? Ugh. So much incompetence in government.
Even the current schedule is confusing:
I am guessing that we are in Phase 1A for Tier 1 and Tier 2 population? The explanation says Phase 1A: Critical and Healthcare Workers. Critical what? Critical healthcare workers, critical workers in general, or just critical people? Then they go on to explain Tier 1 but the last bullet just says Dialysis centers. Again, what about dialysis centers? Does Tier 1 include only dialysis center workers or patients as well? The three previous bullets in the same section are very detailed, yet the last bullet has zero information. If dialysis patients are not in Tier 1, and dialysis centers is not mentioned in Tier 2 and Tier 3, then are we (patients) included in Phase 1B and 1C?
Digging deeper, bullet #2 says,
Skilled nursing facilities, assisted living facilities, and similar settings for older or medically vulnerable individuals and residents in these settings
So non-healthcare workers are include in Tier 1. This population makes sense since that is a very high-risk group and there has been many documented deaths. My point is that dialysis centers are fairly similar. The workers do come in contact with a lot of patients but only 3x when compared to dialysis patients (three shifts per day). Dialysis patients are usually pretty high risk since many have multiple medical complications. I haven’t heard of a virus breakout at a dialysis center yet, but patients are basically immobile for 3-4 hours, unable to remove themselves from unsafe situations or environments. If dialysis centers are considered high risk areas, then us patients also share that risk along with the workers.
In addition, there has not been any communication from my dialysis center staff on any information they may have that may be relevant. Like always, zero information when you need it next. I guess I just keep doing what I have been doing for the past 10 months and hope I get the vaccine call before I get sick and die.
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I found an academic article online that suggests dialysis patients, especially in-center patients, are at very high risk, with short-term mortality at 20%.
Coronavirus disease 2019 (COVID-19) has affected the care and outcomes of patients treated with dialysis worldwide. In this issue of Kidney International, 3 reports highlight the disproportionately severe impact of COVID-19 on patients on dialysis, noting its high prevalence, particularly among patients receiving in-center dialysis. This likely reflects patients’ limited ability to physically distance as well as community exposures, including residence in areas with high rates of infection. Patients on dialysis are at extremely high risk should they develop COVID-19, with short-term mortality of 20% or higher. Accordingly, it is imperative that the kidney community intervenes to reduce the threat of COVID-19 in this vulnerable population by focusing on modifiable factors, including universal masking of patients and staff and enhanced screening, including testing for COVID-19 in the patients who are asymptomatic during times of high local prevalence.
Because I don’t want to start insulin injections, I’ve been testing my blood glucose levels quite often, sometimes 6-7 times a day. My endocrinologist wrote a prescription for test strips. The supply order is probably for a month with three tests per day, so about 100 test strips. Even with insurance, the pharmacy is charging me $70. I still have hundreds of strips so I’m going to reject the prescription until I figure out the pricing. Unfortunately, the new year started so I have to pay the out-of-pocket amount again. Not sure what this does to my share of prescription orders. I’m still on Tradjenta, which is costing my work insurance about $10/day.
Back to my blood glucose, the above is a screenshot of the past 30 days as recorded by my meter. The upper/lower limits are 160 and 70 respectively. With the one measurement that was taken too soon after a snack, all the numbers look fine and within normal guidelines. I sent this data to my endocrinologist during Christmas weekend and she was fine keeping me off insulin if the numbers are consistently normal.
I’ve been very tired lately. Not sure if it’s just dialysis catching up to me, or my inability to sleep well at night. After dialysis this morning, I went and got some lunch and charge my car. I got home at around 11:30 am and took a nap. I think I woke up at 2:00 pm and 4:30 pm but went back to sleep. I didn’t get up until around 7:00 pm to eat dinner. After dinner, I cleaned up a pile of paperwork, then napped a bit more. Now it’s 11:30 pm and I probably slept 10 out of the last 12 hours and I’m still tired.
I probably won’t be able to sleep tonight though. My biorhythm is all messed up.
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I’ve been trying to sleep during dialysis without much success. It’s mainly because of the sucky chairs. When it’s fully reclined, the chair is not exactly flat, and my feet are dangling of the end of the footrest. If I stay in that position, my back starts to hurt after about 30 minutes. Today however, I tried leaning a bit to my right, since sleeping to the left still puts pressure on my heart and chest cavity. I had to be careful because of all the tubing and I couldn’t move my right arm, but was able to rotate about 30-40 degrees to take some pressure off my back. It wasn’t exactly comfy but I was able to fall asleep for about an hour. I’m going to try that on Sunday to see if I can get more rotation and a bit more sleep.
Since several of my friends haver been asking me, maybe other people have questions as well. This is from several past conversations with my transplant coordinator so I’m not 100% sure it’s accurate until I hear from my current coordinator about my case.
UCLA has two different groups to handle transplant recipients and donors. They each have a coordinator and a separate surgical team. For example, I’ve never heard any information from the donor side. I only get information since my donors candidates are my sister and good friend, and they pass along news to me. In my sister’s case, it took over three years but she finally got approval from the donor committee a few months ago. My friend was rejected in June due to his oxalate levels. I was approved in the past but was put on hold due to my heart surgery, and needed a bunch of tests ans appointments to get back on approved status. When my sister was approved, I had three more conditions to meet: 1) heart stress test, 2) colonoscopy, and 3) approval from cardiologist to temporarily stop taking Eliquis (blood thinner). Since then, I took a Lexiscan test which required two echocardiogram follow-ups, did my first colonoscopy, and got agreement from my cardiologist to stop the medication a week before surgery. My coordinator has not communicated any more conditions to meet so I assume the transplant committee will meet to approve/reject my candidacy. I can’t remember if they meet on Mondays or Fridays but I should hear back in a few weeks at the most.
Once both patients are approved, then the donor and the transplant coordinator meet to schedule the surgery since both need to happen around the same time to preserve the health of the donated kidney. They will also need to reserve two ICU beds: 2-3 days for the donor, and 5-6 days for the recipient. This likely was not an issue in the past but now with the COVID-19 resurgence, there are no ICU beds in Los Angeles County. Because we can control the timing of the surgeries, I believe a live donor transplant is classified as an elective surgery so they’re pretty low priority right now. Hopefully, with the vaccine and more awareness, all things pandemic will improve and some ICU beds will free up. Here are some LA County hospital capacity data:
There appears to be only 25 unoccupied and staffed ICU beds in LA County as of 12/30. Not sure how many are at UCLA, but pretty sure they aren’t going to reserve two for a kidney transplant anytime soon.
<rant> Finally, to the covidiots who think violating social distancing orders and getting sick has no impact on society, you are wrong. You may survive and recover, but other people you may have infected are dying, in large numbers. Also by being careless, you are using up scarce medical resources that are needed by other patients. I have been on dialysis for over four years so another few months won’t kill me but for stroke or heart attack patients that cannot find an open ER or ICU bed? They are dying thanks to you. </rant>
I met with the nurse practitioner yesterday and she said everything looked fine. They removed four polyps; most were normal but there was one that needs closer attention. There were also some voids(?) in the colon walls that may collect debris and become infected. She told me to eat more fiber, including supplements like Metamucil, and go back for another colonoscopy in three years. Arg! I thought I was done for another 10 years. Actually, the whole experience wasn’t too bad except for the cleansing part.
I also got an email from UCLA letting me know that they were good with my second echocardiogram. I assume the colonoscopy results are fine for a transplant so we’re all done with tests. Now the scheduling wait begins.
The chart shows daily number of hospitalization in Orange County. There was definitely a huge spike starting in mid-November, but the rate of increase is trending down again. If I was optimistic, then it looks like the “second wave” is behind us with better days ahead. More likely however, the current spike is from careless people gathering during Thanksgiving, and an even bigger spike is coming for Christmas/New Years. With the hospital out of ICU beds and just full in general, a bigger spike in patients needing hospitalization will just mean more dead people. There’s a lot of hope and expectation placed on the new vaccines.
😰… I’ve been a bit slack in controlling my fluid intake this week. My “dry” weight is currently 78.2 kg, but I ended Sunday’ session at 80.x kg (I can’t remember the exact number). I don’t think I went overboard with food and drink. In fact, it’s about 2:00 am right now (can’t sleep again) and I am starving. The scale at home is not calibrated with the scale at the clinic but I am 82.6 kg this morning without shoes. I typically weight myself at the clinic with shoes on, and then subtracting 0.5 kg to get to a consistent baseline. This would put me at ~83.0 kg, which is only ~3 kg increase but ~5 kg over dry weight. Since my blood pressure has been dropping precipitously near the end of each session this past week, the clinic have not been super aggressive with the ultrafiltration (UF) or fluid removal as they would like. They may even add another session for UF if I can’t lower my weight on my own.
All that is secondary. I’ve also noticed that my breathing has become more labored, especially if I lay down on my left side. That has always been marginally the case, but it feels a bit worse this week. I feel much better than a few months ago when I definitely had ~500 mL of fluid in my chest cavity, but maybe some has diffused back.
Recently, I’ve felt like the guy with an angel on one shoulder and the devil on the other, arguing about self-control. The right thing to do is to watch what I eat and drink more diligently since my weight is creeping up, and my phosphorus/potassium lab results are high. However, I’m getting more urges to forget all that, and eat/drink whatever I want. Maybe it’s spending nine months in semi-isolation that’s weakening my resolve? Or that I’m so close to the end of the tunnel for a kidney transplant but it on-hold indefinitely due to the recent COVID resurgence?
Ugh. I can’t sleep again. I am still exhausted during the day, but when I try to go to sleep at night, I end up staying up all night. It’s now 2:51 am. I actually fell asleep at around 8:00 pm but got up at 10:30 pm covered in sweat. I got up and took a long shower, and haven’t been able to fall back asleep. Part of the problem seems to be some fluid buildup in my chest cavity again. I can’t be sure without a CT scan or echocardiogram, but breathing is a bit harder, especially when I sleep on my side. I’m okay when sitting and standing so I can’t be 100% positive.
In addition, I’ve been experiencing cold sweats at night for about a month. I think I’m feeling cold due to anemia. I know the dialysis center has been injecting me (or the machine during dialysis) with Epogen to try and increase my hemoglobin levels. The nurse came by just last week to ask me about bleeding since my test resulted dropped below 10.0 g/dL. I told her I was bleeding for about a week post-colonoscopy so maybe that’s why I’ve been feeling so bad this week. Anyway, I pulled out an electric blanket that my coworkers gave me during heart surgery recovery and placed it on my bed. I would turn it on low/medium right before sleeping and it was glorious. However, soon I started waking up covered in sweat but cold. I’ve since put away the blanket but I’m still sweating a lot at night.
So for the past three hours, I’ve been lying in bed trying to find a good position to ease my breathing a bit, but also sweating because of the thick comforter while shivering from chills at the same time. I feel much better now, sitting at my desk with a thick jacket but I know the exhaustion will catch up with me during dialysis in few hours.*
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*Due to Christmas Day on Friday, the weekend dialysis schedule got shifted by a day. Friday patients were moved to Saturday, and Saturday patients were moved to Sunday when the clinic is usually closed. This means I had a three day break since Thursday’s session, partially accounting for the excess fluid in me. The head nurse already said I may need an extra session next week… ugh, I hope not.
CNN reported that one in one-thousand Americans have died from COVID-19.
The United States reached a grim milestone on Saturday: 1 in 1,000 Americans have died from Covid-19 since the nation’s first reported infection in late January.
Census Bureau estimates for the last week of December place the US population at around 330,750,000. On Saturday afternoon, the national death toll from Covid-19 reached 331,116, according to data from Johns Hopkins University.
Covid-19 infections in the US have reached more than 18.7 million.
That seems to be a crazy high number. I’m not sure how the anti-maskers and COVID-deniers explain away 300,000+ deaths. Are they saying that the deaths didn’t happen and it’s just a made up number? I’m sure the CDC or Johns Hopkins can put a name to all the deceased patients. Or are they saying that these people were going to die anyway since they were old and sick? I wouldn’t care if they were harmless like the flat-earth people, but covidiots are dangerous. By ignoring health rules, they are endangering and infecting those around them with the virus.
As for the 1:1000 number, several cities in Orange County already reached that goal: Los Alamitos at 2.5, Seal Beach at 1.6, and both Anaheim and Santa Ana are at ~1.1 deaths per 1000 population with Fullerton at 0.9. Where I live, City of Orange, is currently at 0.64. The website also lists California at 0.62, Los Angeles County at 0.91, and Orange County at 0.56.
The worst part is that we’re not done yet. The number of cases and deaths will continue to climb since the Christmas and New Year spike is coming in January, and not enough people have been vaccinated yet. The CDC has a webpage for forecast models and it looks like we will hit 400,000 cases by the third week of January.
My friend brought over some Honeywell KN95 masks from China.
They’re compliant with Chinese standards hence the K prefix. A few articles online said they’re do not meet the US N95 standards so I opened a bag to check it out myself. The N95 mask feels like it’s made from a denser material and the elastic loops go around your head instead of behind the ears.
The same friend gave me some N95 masks early on. I have a larger than average head so all these masks fit tight on my face. It was very hard to breath using the N95 mask so I gave up on them early. Right now I use the rectangular surgical masks since they are usually pretty loose fitting. However, that was during the time that I had pleural effusion so maybe I should try again now that I can breathe.
I’ve been wearing the KN95 mask for about 10 minutes and my ears are plenty sore. I wanted to see if the elastic will stretch out a bit, and if I could wear it for several hours. If I wear the mask to dialysis, they have to be comfortable for about 4.5 hours. Without modification, I probably can’t wear them for more than 15 minutes. My mom volunteered to splice in some additional elastic straps but I think that will reduce the effectiveness of the mask.
The news is pretty depressing. There are reports that hospitals in Los Angeles and Orange counties are full of dying COVID-19 patients. A lot of them are hooked up to ventilators and most probably won’t survive past the end of the year. However, they are taking up beds in the ER and ICU so other patients are waiting a long time to be treated or just turned away. What a mess.
Unless these are new strains of the virus, the only difference between August/September and now has to be unsafe social interactions. Looking at cumulative cases over time by age, it does seem that this new new wave of cases is due to younger people.
I think the number in the top chart is for all time since nothing changes when I change the period drop down. From the bottom chart, it does look like the purple/blue colors are growing faster than the orange/yellow/red sections. This fits the narrative that younger people are tired of staying home, and believing that they are less susceptible to the virus, are resuming social interactions like there is no pandemic. I can’t get the website to show hospitalization by age group to check on the hypothesis.
In any case, we’re heading over to my sister’s house tomorrow for Christmas dinner. We’ve probably met them about once every few weeks. They don’t really go anywhere either but my nieces were going to school a few days per week and a few soccer tournaments in Arizona. There is some risk but they are literally the only people I’ve met in a social capacity since March. Let’s hope some of us will be vaccinated soon.
Life with chronic diseases 
