Time Management

Now that I am four months post-transplant surgery, I have almost forgotten how much time dialysis take up.

My first hemodialysis (HD) experience started with 3.5 hours twice a week. It eventually changed to three time a week. My scheduled time was from 12:30 pm to 4:30 pm Tuesday/Thursday/Saturday. This was before COVID so I drove to work Monday/Wednesday/Friday, and worked from home Tuesday/Thursday mornings. I would bring my laptop and cell phone, and managed to do some work with the help of my analyst in the office. For weeks where I was too tired to work in the mornings, I took a PTO day to cover.

When I switched to peritoneal dialysis (PD), I started going into the office daily, but that meant zero free time during the week. I could watch TV or use my computer after connecting to the cycler, but would have a 20 foot tube attached to me. I found out later that during dwell times between cycles, I could disconnect the tube, and reconnect before the next cycle. This however, increased the risk of infection each time I disconnected, but I could move around the house for an hour or so.

After the bypass surgery and returning to HD, my schedule was now T/T/S from 5:30 am to 10:00 am. This was fine while I was out on medical leave, but not so good once I returned to work. I ended up doing the same thing as before: going into work 3 days and working from home for 2 days, except in the afternoon. After COVID hit in March 2020, I started working at home full-time. I still took a vacation day here and there to cover for missing hours, but that got tedious too. Finally, I switched to a part-time schedule (30 hours/week) that allowed me to keep my health insurance, but with a 25% pay cut.

Post-transplant, I took about 9 weeks of medical leave, and returned to work full-time starting April 2021. Since I am taking anti-rejection medications, I am working from home every day. I have got used to not seeing people from work, but it is difficult. I think I work better if I can talk to people in person, but realized that society has changed, perhaps permanently, due to COVID. Most of my staff were working from home this past year (all computer related), and will likely work a few days from home each week after things return to “normal.:” For me, after 3.5 years of dialysis, it is still hard to think about the next treatment session. Some days, I lose track of what day of the week it is, and try to join conference calls that are scheduled for another day. In addition, as California is opening up in a few weeks, I do not know what my work expects from office workers that do not need to be there physically. Since I do not know if my Moderna vaccine shots are effective, I will likely stay home for a few months more.

Missing Podiatrist

Typically, when someone misses a medical appointment, it is usually the patient. That is why I constantly get reminder emails, texts, and phone calls to remind me about upcoming appointments, or to ask me to confirm the date and time.

This morning, I had an appointment with my podiatrist. The time was scheduled six months ago, and it was a regular check-up appointment, plus also to follow up on the huge cut on my toe from last year. I realized over the weekend that I have not received any communication from the doctor’s office about the appointment. I did look at the St. Joseph Follow My Health (FMH) app, and the item was still listed however. So at 7:35 am, I drove the 15 minutes to the doctor’s office. When I arrived, I found the door locked, and window blinds closed. I knocked on the door a few times and waited. And waited. And waited until someone came out of another door and asked me why I was there. Turned out the podiatrist was out the entire week, but no one had notified me. The staff from another office (I think all the “suites” are linked) mentioned it was likely due to St. Joseph switching their system from Follow My Health to MyChart/Epic. Since I scheduled an hour for the appointment, and now had nothing to do, I drove to the nearby Tesla Supercharger and charged up my car.

Back to the system change, UCLA Health uses MyCharts so I have been accessing the system a lot lately. My nephrologist in Orange uses Athena Health so I have been on their portal for a bit. There seems to be a lot of different solutions on the market. Just go to “Add Another Account” on the Apple Health app, and you will see a huge list of different systems. There are literally hundreds of pages to scroll through.

I am getting a lot of notification from MyChart from St. Joseph as they are migrating old health data from FMH. It keeps telling me that there are new test results available, but it just a batch of old tests. Hopefully I can add the new MyChart account to Apple Health and have one place to view all my trended test results.

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About the podiatrist. Someone took down my name/DOB/phone number, and said the office will call me later with a new appointment date/time. Luckily it was a regular check-up and not something more important.

Weight Maintenance

I read online that post-transplant surgery, a lot of recipients either gain weight due to anti-rejection drugs, ~~or lose a lot of weight due to fluid loss~~ (oops, I guess that’s not really common). Here is my weight for the past year as recorded by my Fitbit Aria scale:

In the past 12 months, I have lost about 10 kg or ~22 pounds. For the past six months, my weight has been pretty steady at around 80 kg or between 175-180 pounds. Due to the higher blood sugar readings, I have been trying to eat less carbs and sugar so maybe that has helped keep the weight gain down. Since my right leg is still hurting a bit, I have not been walking that much. Not sure what that does to the weight however. I will have to start walking more soon though.

Dental Appointment 5/10/2021

Long time readers (if there any) will remember a lot of posts early last year about my dental issues. I ended up getting a few root canals and quite a few more crowns. Looking through transactions on Mint, I found ~$15k of payments to the dentist, and about $3,600 to the endodontist. This also does not include the $1,500 paid by Delta Dental. Anyway, the total was close to $20k for 2020; there was probably more in 2019.

Today was just a cleaning. They had placed me on a three month schedule, but I missed the February appointment due to the transplant surgery and subsequent anti-rejection medications. I finally got clearance a few weeks ago to see the dentist again. The appointment went both better and worse than I thought. Based on my recent experience, I expected a lot more commentary and plaque scraping. It turned out just okay, but the dentist says I need two crown replacements. It has been less than 18 months; I thought they last longer? They are both on my left side so maybe it is due to me chewing on that side only since I had two molars extracted on my right side. There is also another tooth that needs a crown. We knew about this one but did not get it fixed last year. Finally, there are one or two small cavities that he can fill.

If you look at the big picture, it is not as bad as a bypass heart surgery or major organ transplant, but it sucks nevertheless. The dental office is also not really close by so it takes an hour to drive roundtrip.

No Immunity?

I saw an article on NPR today about COVID-19 vaccine and transplant recipients. Basically, the doctors are saying that even if you are vaccinated, you should assume that you have no immunity.

Right now, Haidar says, the best advice he can give his patients is to get vaccinated — but keep living cautiously, adhering to the same masking and physical distancing precautions they’ve been following throughout the pandemic.
And just assume you’re not protected, he advises. “I know it sounds lame, but this is all that can be offered now.”
NPR Website

At least he’s right that it is super lame. The article also says experts do not recommend getting an antibody test since it may not measure the right things. WTF? Then what was the basis of the Johns Hopkin study? How did any of the vaccine manufacturers come up with their efficiency numbers? You game me two vaccine shots and you do not know if it did anything at all?

I did ask one of the UCLA nephrologists about this back in late March. Basically she said the same thing. You probably have some immunity, but it will not be as strong as “normal” people, and no, do not get an antibody test. Initially, I thought I would be able to physically go back to work a few days a week, and maybe travel a bit since the last time I travelled was back in 2015. Now it looks like I have to keep hiding out indefinitely since I live in the land of anti-mask and anti-vaccine morons.

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The article did mention that a lot of the immunity issues come from anti-metabolites. I was taking mycophenolate right after surgery, but that tapered off quickly. It is likely that there was still decent levels of the medication in my body when I received the second vaccine shot, but I have been off that medication for several months n0w. Maybe a third/booster vaccine shot will work.

Tacrolimus vs. Mycophenolate

Blood Sugar Update

Three and a half months post-transplant, most of my test results are looking normal. Even my blood pressure, which has fluctuated a lot both before and after transplant, has settled down somewhat to ~140 systolic standing and ~120 standing. The only remaining problem is blood sugar. I have type 2 diabetes for many years. While on dialysis, whatever insulin I naturally produce stays in my body since it is not filtered out during dialysis. However, post-transplant, the combination of anti-rejection medication side effects and new kidney flushing out insulin means high blood sugar and need for insulin shots. I finally figure out how to export and graph blood sugar readings from my meter. Here is data since last November when I switched to the new meter:

The text is a bit hard to read, but it is pretty obvious when the surgery occurred. Post-surgery, I have been on three different insulin injection schedules. Again, it is hard to see, but the first 1/3 period after transplant was just Humalog on a sliding schedule. The second 1/3 period was two insulin pens but at a low dosage. Finally, the last 1/3 period has the same two insulin pens but will a higher dosage. There is a slight downward trend at the end of the graph. It is likely a combination of lower tacrolimus dosage and me actively avoiding food with added sugar. Hopefully the trend continues.

The data also says that there are 438 readings on the chart. The time scale is just shy of six months so that averages out to 2.5 lancet pricks per day. If you look at the fingertips of my left hand, you can definitely see hundreds of tiny dots showing where blood was taken for each blood sugar reading. My iPhone 12 camera cannot focus close enough to get a decent photo; I may have to get out my SLR and a macro lens to see if I can get a clear pic.

Another COVID Spike

So what is going on in Michigan? For awhile, it looked like COVID cases were dropping in the US with people getting vaccinated. It certainly looked like that in California and Orange County.

It appears that things are under control, and California is set to be fully open on June 15.

This is Michigan during the same time period.

The seven day average is finally decreasing but there was definitely another spike in early April. I do not follow Michigan news so I do not know what could have caused this. Is the state not getting enough vaccines? Did their governor open up the state already? Things are improving but we are still in the midst of the pandemic with new and more infectious variants popping up all the time.

I spoke to my cousin who is an ICU nurse in Toronto. She has many stories of anti-mask and anti-vaccine idiots there too. I thought it was just a crazy California thing.

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From this article, it appears they relaxed restrictions too early, and do not seem ready to apply them again. Own goal, I guess.

Traditional Chinese Medicine

Since I am Chinese, I have grown up around Traditional Chinese Medicine (TCM). However, as I lived mostly in Canada and the United States, I have not been treated with TCM. I probably did have some herbal supplements before, and there was my experiment with acupuncture in treating my peripheral neuropathy.

Traditional Chinese medicine (TCM) is a broad range of medicine practices sharing common concepts which have been developed in China and are based on a tradition of more than 2,000 years, including various forms of herbal medicine, acupuncture, massage (tui na), exercise (qigong), and dietary therapy.
Wikipedia

I am sure that through years of anecdotal evidence, there may be some basis for herbal supplements and even acupuncture. However, for major illnesses, I am highly skeptical about using TCM to diagnose and treat the illness. Even worse are the contorted explanations given to try and explain the efficacy of TCM treatment. From my limited experience, much of it is totally illogical, and runs counter to Western medicine or even basic science.

I bring this up because my aunt called my mom about my uncle (dad’s brother). He had a stroke several years ago. I do not remember the exact date, but likely early 2015 based on some data from Google Timeline. Since two out of three of their children were in Asia, I went to the hospital almost daily after work for a few weeks after his stroke. My parents were visiting relatives in Canada at that time; when they returned to LA, they took over the visitations. The stroke was pretty serious from the CT scans I saw. It turned out my uncle had several smaller strokes before, but he never noticed, nor did he go see doctors regularly. I think he was about 70 years old at the time.

The first few weeks at the hospital was pretty bad. He was incoherent, very agitated, and hostile to hospital staff. He did improve after a few weeks, and the hospital sent him to a residential recovery center. My aunt brought him home soon after that and has been taking care of him since then. He showed more improvements but lost a lot of cognitive functions. Meanwhile, my two cousins stayed in Asia, and the last/youngest cousin got married, so my aunt basically took care of him alone. The reason she called today was that my uncle deteriorated a lot recently. He can no longer speak and has lost bowel control. She was looking for information on homes for dementia patients, since my parents had to take care of my grandmother many years ago.

It did not have to happen this way. From secondhand information, mostly from my mom, my aunt relied on TCM to treat his stroke for the past five years. That means no CT scans, no anti-dementia medication, no Western doctor visits. What she had been doing was bringing him to a TCM “doctor” who gave him herbal medicine, and treatment that literally translates to “hitting the head.” （打頭）I cannot find anything on this online, but my aunt pays $40/session, and she gets the treatment done too. I am pretty sure it is not an effective treatment for stroke, or anything at all. Recently, after my uncle’s condition worsened, the TCM practitioner said his brain “shrunk” causing the new symptoms. How did they know? Did they do a brain scan? Nope. It seems like they put a finger on his “energy paths” to feel the diagnosis. Is this like chakra or something? Sounds suspiciously like nonsense to me.

I am not sure what happens now. My uncle used to be the president of a multi-national corporation with hundreds of employees. The cousin not in Asia has a PhD in some kind of medical field (I think occupational therapy). Her spouse is a nurse. The other two cousins went to well-known US universities. I seriously do not understand how things have gone so wrong without anyone suggesting a visit to a neurologist. My grandmother on my dad’s side had Alzheimer’s Disease, and I heard it is typically passed down from mom to sons. My other uncle (dad’s other brother) is also showing signs of dementia per another cousin. I think in addition to the stroke, the first uncle was showing symptoms of dementia too. That should have been a huge red flag to his family to seek professional medical help. It is probably too late now.

I am kind of sad. Although we were not super close (their entire family moved to Taiwan for many years before returning to LA), my uncle did give me my first office job. When I moved here to the US, I worked at a supermarket during the summer before starting my senior year in high school. After a few weeks, he gave me a job at his company, and I worked several years there (full-time summer and Sundays during school year). It was a much nicer work environment, even though I had to help out in the warehouse and drive a forklift occasionally.

I think my mom was able to convince my aunt to at least get a CT scan and get a diagnosis from a real doctor. Maybe there is room for improvement if he receives proper treatment now, but I am not hopeful. 😢

Blue Pure 411 Auto

I cleaned my room this past weekend. Actually, I only cleaned the TV/multimedia stand since I wanted to put two more speakers on the stand. Previously, there was a Samsung 50″ LCD TV, a Yamaha 5.1 amplifier, bookshelf speakers, center speaker, and random small stuff like a Nintendo Switch and a DJI Mavic Mini drone. I freed up a pair of Rokit 5 studio monitors and I wanted to put in on the same stand and connect them to a Chromecast Audio so I can stream music from Spotify. I know… needlessly complicated.

When I pull the stand away from the wall, the back of the stand was covered with an amazing amount of dust. It took a dozen wet wipes to get everything kinda clean. It not only the stand but every flat surface in the house has a lot of dust on it. I do not know where it comes from. Maybe the toll road a short distance away, jets overhead to/from John Wayne Airport, something else? I decided to get a small air filter for my room to see if it will help. After reading a bunch of reviews, I ended up buying a Blue Pure 411 Auto for $120 on Amazon. A coworker told me about the brand many years ago. Her husband has really bad allergies so they have a large Blueair unit in each room with HEPA filters. The “Auto” means the air filter will sample the air quality and adjust the fan speed accordingly. I thought the air quality was pretty bad, hence the dust, but the air filter says the air is “good” and has kept the fan on low. I will let it run for awhile and see how dirty the filter element gets.

One good thing about the filter unit is that it is very quiet. With the fan on low, I put my iPhone on top of the unit will a sound meter running. The average sound level is 35 dB. It is barely noticeable and I usually have music playing softly while I sleep anyway.

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These are the first generation Rokit 5 monitors by KRK. I have had these for a long time. They have their own amplifiers (bi-amped) built-in to the speakers so you do not need a separate amp. I think they were around $150/each when I purchased them. They sound better up close than from across the room however.

I believe KRK is currently selling the fourth generation of their Rokit monitors.

Pandemic Over?

Looking at the data for Orange County, it definitely looks like the number of cases have dropped to very low levels. People are still testing positive, but the daily number of deaths have been in single digits for all of March. However, if you look at the entire US, there seems to be a slight increase in cases recently, and the infection rate has remained steady at 50k+ for the past month.

Since the weather was so nice, I went for a walk to the local park. There must have been over 200 people in the small park, and hardly anyone had a mask on. I don’t know… seems like everything the numbers get better, a bunch of people start socially gathering right away without any precautions, and the number of cases shoot up. I am still being careful since I am still taking two anti-rejection medications. Hopefully we do not have another COVID spike with the new variants, or this mess will never end.

Potential Cost of Medicare For All

I have been sleeping pretty well last few days, but for some reason, I cannot fall asleep tonight. It is 3:45 pm and I have not slept at all. Instead, I have been browsing Reddit and came across this post. It is nothing new; there is probably something about “free healthcare” posted every minute. Since Reddit users are mostly young and liberal, you can guess how these discussion usually go.

Politically, I am probably more liberal socially (for an American) and more conservative fiscally. Basically people should be able to do what they want, as long as I do not have to pay for it. Also, the post above is asking doctors for their opinion. I am not a doctor, just an experienced patient, but I feel qualified to discuss the financial impact of “universal” healthcare.

First, some data. Medicare was 14% of the US federal spending in 2019, or about $644 billion. Next, the medical insurance recorded medical costs of $632 billion and administrative costs of $88 billion. Overall, the industry only has a 3% profit margin, or about $22 billion. If we enacted “free’ healthcare, in the short-term, Medicare costs will increase by 100% or more since costs will not change much initially, but demand will likely increase. In 2019, insurance companies collected $735 billion in premiums so I guess companies/individuals can just pay that as a tax. However, since half of the population do not pay taxes, the impact of any new “healthcare” tax will impact middle and upper class Americans. Another issue is Medicare reimbursement rates are much lower than private insurance. A lot of doctors either do not take Medicare or limits the number of Medicare patients. What happens when Medicare is the universal insurance? Will doctors and hospitals agree to what essentially a huge pay cut?

Finally, as mention above, I really hate the word “free” because it is not free. In reality, it just means someone else is paying for it. Reddit comments like to say that insurance profits will save lots on medical costs. Yes, $22 billion is a lot of money, but it is tiny compared to the size of the healthcare market. The solution is probably to focus on preventive medicine and force doctors and hospitals to make less money. Will that work?

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Since I am missing a lot of demographic data, I will use my company as an example. We are self-funded, which means the company pays an insurance company (Blue Shield) a small fee ($40 PEPM*) to use their provider network and negotiated prices. Our costs are around $850 PEPM, and some employees pay a premium. If we use $800/month, that works out to $9,600 per employee annually. If the company pays that to the government as a corporate healthcare tax, then I am agnostic. However, I know from speaking to our insurance broker that $850 PEPM is very low, as our employee base is pretty young. Most other companies in the industry spend more. Our company switched to a self-funded model to save money, but a universal healthcare tax may just spread costs based on averages and we would pay more. Even worse, if our company just gave everyone $10k to cover the new healthcare tax, I am pretty sure my tax increase will be a lot more than the $10k since I am in the group that pays taxes.

Sigh. I see the benefit of universal healthcare. People do not have to worry about going bankrupt from medical bills, and it will probably increase the health of poorer Americans. However, if we cannot control costs, then we could have worse health outcomes and a damaged economy. I have a lot of relatives in Canada. They pay a lot more taxes for their “free” healthcare, and while it seems like a better system for small health problems, it is absolutely terrible for serious illnesses.

*PEPM = per employee per month.

Strange Weather

The weather was pretty weird today. Temperatures have been pretty cold these past few days but it was really hot today. The high was 88°F and my dad almost turned on the air conditioning. I was going to take a walk but waited until 7:30pm when it was a bit cooler.

I tried to walk a bit faster today and ended up walking ~1.5 miles with a pace of 18’30”. The Apple Fitness app finally gave me credit on the green exercise ring, but only 15 minutes even though I walked for about 27 minutes. I am not exactly sure what counts as a “brisk” walk.

One of the goals I set for myself post-heart surgery was to run a 5K race in 2020. Unfortunately, the COVID pandemic hit and shut everything down. I also had some heart issues with a-fib and excess fluids in my chest. Now that I am feeling better post-transplant, I want to try for the same goal again. I downloaded the C25K app on my iPhone back then but deleted it mid-last year. I will download it again and try to follow the workouts. Gotta start somewhere.

Bike Riding

I am not sure where the idea came from, but I decided to try and ride a bike outside today instead of walking. I have two bicycles: a 2003 Giant NRS3 mountain bike, and a 2015 Trek 7.4 fitness (hybrid) bike. I believe I purchased the mountain bike for about $1,200 and the hybrid bike for $750. I had another hybrid bike that I bought in high school but gave it to someone at church a long time ago.

*My bike is silver and blue, but the rest is identical.*

I bought the mountain bike while I was still married, and would go riding with some church people. The group rode pretty often and had much more expensive equipment than my Giant. We would usually ride the Fullerton Loop, and I would always be the last to finish. It was fun in the summer, but we also rode in the winter when it was already dark. I had to buy super bright halogen lights to see where I was going.

After moving to Orange and having my sister move back to SoCal from Oregon, I wanted to ride some of the paved bike paths in Irvine. The mountain bike was fine, but it was super heavy. I also did not want a expensive road bike, so I bought the Trek. It has an upright frame, but has super skinny road tires.

Trek 7.4 FX. I have the same exact bike, even the same color.

I literally rode the bike only once after I purchased it. Having not ridden for a long time, I went on a long ride with my sister and niece. I was fine until I was not fine. I probably overexerted myself and my legs cramped. I think my sister rode home first, and came in her station wagon to pick me up. Totally embarrassing. Before I knew it, I started dialysis and did not feel like I have the energy to ride a bike anymore.

So today was the second time I rode my “new” bike from five or six years ago. It was both easier and harder than I imagined. I was a bit wobbly at first, but as the saying goes, I was riding fine after about five minutes. I learned how to ride a bike in elementary school so over 40 years ago. Since I could not find my bike helmet, I just rode in our neighborhood. It was pretty easy until I had to go up a slight hill, and it suddenly became difficult. In the end, I only rode for 17 minutes and covered ~2.5 miles. Next time, I am going to buy/find a bike helmet and see if I can ride a bit farther, even though my house is surrounded by hills.

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Looking on Amazon at bike helmets, it is pretty evident there are two groups of products. One group are the ubiquitous cheap Chinese products, some selling as low as $20, and having strange and awkward brand names. This is common for a lot of products. Each one would be virtually identical to several other products, but would have a “brand” name of seemingly random letters. The other group of bike helmets are $50+ and made by Giro; my “lost” helmet is also made by Giro. The dilemma is whether to save money and go with a cheaper helmet, or go with a brand name. For a bike helmet that could possible save my life or protect from brain damage if I fall/crash, I think I will spend the extra money. I am super leery of crappy Chinese products, and have been actively avoiding anything “Made in China” as much as possible. Apple really need to get their shit together and rethink their supply/manufacturing chain.

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Speaking of the China supply chain, I am not usually the liberal social justice warrior, but this China using slave labor to make stuff (in this case cotton) is disgusting.

Orange County COVID-19 Update 3/22/2021

When I spoke to a nephrologist from UCLA this morning, I asked her about social gatherings. I was given pretty restrictive guidelines post-transplant but I wanted to see if things have changed. She basically said if it is outdoors and everyone has a mask on, then it should be okay. My parents made a reservation at a Chinese restaurant this weekend but I think the seats are indoors. I think I am going to have to skip the meal based on what the doctor said. She did say that if I felt fine, I can go back to work.

I checked the latest COVID-19 data for Orange County, and it does look much better. Here is data from the OCCOVID site:

This is daily number of new cases for all time. You can clearly see the two spikes in cases back in July last year, and during year-end. Also, the new case count seems to have decreased dramatically. I am not sure if this is due to the vaccines since no one was wearing a mask when I was walking in the park yesterday. Out of about a hundred people that I saw, me and this one other guy was the only people wearing masks. Two weeks ago, most people I saw did have masks on. Is another spike coming as people begin to relax and meet socially again?

Suicide

I have been on a Running Man binge lately, downloading and watching episodes. Last night, I came across episode 388, which had Goo Hara as a guest. Unfortunately, she committed suicide in November 2019. I remember this very clearly since it was the first weekend after my discharge from heart bypass surgery. I was a big KARA fan and had seen them in concert at the Hollywood Bowl in 2010.

Anyway, clicking on links in YouTube, I found an upload of a Instagram live that Hara recorded right before she committed suicide. Sadly, it was a video message to Sulli, another K-Pop idol from the group f(x) that had also committed suicide six weeks earlier. Reading through online articles, it seemed both were victims of online bullying, with Hara also physically abused by her ex-boyfriend. He also threatened Hara with releasing sex videos taken without her consent.

I am not sure why I posted this. It was very sad to watch the Running Man episode. In hindsight, the introduction interview with Hara was super cringey when they talked about her prior comment about marriage. Even though I listen to a lot of K-Pop, it is a brutal industry, especially for girl groups. Also in Korea, similar to other East Asian countries, mental health is not really considered, and those that seek counseling or therapy are considered mentally weak. Very sad.

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Post heart surgery, I had to switch back to hemodialysis. The first few weeks were very tough since I could not really walk, and had to use a wheelchair to go from the parking lot to the clinic. I also felt terrible, with chest pains and anxiety. I even got sent to the ER during dialysis due to a likely panic attack. However, I had a lot of support, even if most of it was online from text messages and email. I did not have strangers cyberbullying me or experience physical abuse. Even then, I had moments where I though about giving up, and just stop going to dialysis. Now that I am in a much better place, I can see how depression can mess with your perception of reality, and how hard it is to overcome it on your own. I do not understand why people are so toxic online. Is it the anonymity? Are those people like that in real life, face-to-face interactions?

Post-Transplant Quarantine

My church small group is meeting in-person this week. They are going to meet outdoors at Tustin Marketplace and getting take-out food. The last time we did this, I got Panda Express. Chinese food is always an option.

When I was discharged from the hospital, they said to stay away from group of people. However, that was when I was on the initial dose of anti-rejection medications. Those meds have been greatly reduced since then, and my white blood cell count is in the normal range, though I am not 100% sure what that means. I sent a message to UCLA asking them if and when I can meet non-family members, but they decided to punt the discussion to the next appointment. Since that is next Monday, I guess I am staying home this week. I also asked them about food restrictions and whether I can return to work earlier.

Looking at Google Timeline, for February 2021, there are only five dots on the map: home, sister’s house, UCLA (Medical Plaza and Tiverton House), Albertsons, and Chase Bank (to deposit those insurance checks). For March so far, the list is: home, sister’s house, UCLA (Medical Plaza and Tiverton House), UCLA Lab (Laguna Hills), and Albertsons. Pretty depressing.

Hypotension

While I was on dialysis, especially after starting hemodialysis again after heart surgery, my blood pressure has been all over the place. I published many posts with a record of my blood pressure readings during dialysis, and it can range from over 200 to under 100. I usually do not feel anything when the blood pressure is high, but I would feel dizzy and nauseous when it drops below 110, especially when standing. I was taking three different medications for blood pressure, but it was still pretty much out of control.

Post transplant, my blood pressure would still fluctuate wildly, even though the new kidney was doing its job of clearing fluid from my cells and bloodstream. They kept me on 25mg of Metoprolol Tartrate and also 30mg of Nifedipine ER (extended release). Initially, my blood pressure would still reach 190-200, but some of it was due to the prednisone I was taking. As the doctors reduced my anti-rejection medication, I feel my blood pressure was becoming more stable. Earlier this week, I think it stayed within 110 to 160 for the systolic measurement. After Thursday’s clinic, they cut my prescription of Mycophenolate completely, so I am on the minimal dosage of prednisone, and about the same dosage of Tacrolimus as when I was discharged.

Since Thursday, my blood pressure has been pretty stable. I have only been taking the Metoprolol since I am very sensitive to Nifedipine, and I did not want to drop my blood pressure too much and have hypotension. Today at dinner, I measured 159 sitting and about 135 standing so I took the Nifedipine pill; I believe I have skipped it for the past two days. Anyway, I felt fine for awhile, but when I got home (from my sister’s house), I started feeling dizzy. My sitting blood pressure was about 95/60 which is super low for me. The earlier blood pressure reading must have been an error and I should have not taken the Nifedipine. I am trying to stay seated as much as possible since each time I stand up, I feel dizzy. Hopefully it will pass soon. At dialysis, it usually takes 30 minutes to recover if I have hypotension post-dialysis.

One month history of blood pressure readings. Since I measure multiple times a day, this gives the range of values. There is a definite, if slight, decreasing trend in the values for my systolic blood pressure readings.

Post-Transplant Peripheral Neuropathy (update)

Both my parents and my sister asked me whether the kidney transplant fixed the pain in my feet. The answer is a resounding no.

I have had pain from peripheral neuropathy before I found out about my kidney failure. My understanding is that the numbness comes from damaged or dead nerves caused by uncontrolled diabetes, and essentially there is no cure. I was lucky that I did not experience much neuropathy during my hospital stay, or even the first few weeks of recovery. However, neuropathy pain from last night and tonight have been pretty intense, and is preventing me from sleeping right now even though it is 2:00 am.

Last night, the pain was pretty high up on the outside of my left ankle. I have never experienced pain there before. Since it was kind of high up on my lower leg, I could apply pressure to the pain point and actually feel something, usually more pain. This was different than all the previous pain points where I could not feel any external pressure on the pain point. Tonight, the pain is in the same area but a bit lower. Like last night, I could push on the area and manually trigger the pain. I tried using a massage wand on the spot, but that just made it worse. The Tylenol I took has not helped yet so it looks like it will be a long night of pain attacks. I also had some sporadic pain in my right foot from neuropathy, but the entire lower from the knee down is still hurting from the fall I took at UCLA. The pain in my right leg gets a lot worse after 15 minutes of walking so I have only walked every other day recently. The nurse practitioner at UCLA said it may take 4-6 weeks to heal from a fall to the kneecap so I may have to limp around for another three weeks.

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Update: 2/26/2021 9:04 pm

So all the pain attacks have pretty much stopped for the moment. It was pretty bad yesterday while driving home from UCLA after my clinic appointment. In the hour drive home, I had three places on my left foot experience shooting pain, and one place on my right foot. Usually, the pain is limited to one location at at time, but this time, the pain was pretty much constant with four different locations hurting at random.

Of course I rather have the kidney transplant than to go back to the way things were but this multiple pain points at the same time is killing me. Good thing most of the pain was in my left foot, which is not used when driving.

Endocrinologist Appointment

I had a Zoom telehealth appointment with my endocrinologist. I had been sending her office email updates post-transcript but she wanted to discuss my blood sugar and medications. UCLA also has been asking me to see my endocrinologist too.

The appointment went well. I had given her assistant all my blood sugar readings for a week. Since I am already at the maintenance level for prednisone, she does not think my blood sugar will decrease further from reducing other medications. The pill I am taking, Januvia, does the same function as the HumaLOG, which is to control blood sugar due to food. Since my blood sugar is consistently above 200 during the day, she is replacing the Januvia with a long-lasting insulin. She had prescribed Toujeo previously but I never used it. Now I will need to inject two types of insulin each day. Ugh.

The pricing on the pen needles also suck. At UCLA, I had a copay of $30 for a box of 32 gauge 4mm needles. My local pharmacy wanted $44 as copay for the same needles. I have not checked my mail order pharmacy for prices. On Amazon, there are a lot of inexpensive options for the same size needles. However, none of them will deliver to my house, probably because you need a prescription in some states to order insulin needles. I did find another mail order diabetic supply company that has 100 needles of the same size for $11 per box of 100. Even with shipping, that is much cheaper than either of my pharmacies. Hopefully a needle is just a needle so as long as it is the same size, the needle will work with both pens.

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This is what I initially received from UCLA along with the HumaLOG pens. I looked at the pharmacy receipt and UCLA’s price was $71.50, and my copay was $30. On Amazon, the same item with 90 needles cost $45, but there are other sellers selling for as low as $15. Of course, I cannot order since no one will ship “prescription medical devices” out to patients. You probably have to be outside the USA to receive these items. Our medical insurance system is so corrupt.

I also tried getting needles at Albertsons pharmacy. My endocrinologist sent over a prescription for Droplet pen needles, same 32 gauge 4 mm needles as the BD ones above. Albertsons said my copay was $44 but this item clearly sells on Amazon for $13.89 a box. Again, I cannot order it from Amazon due to our corrupt medical insurance system.

Searching online, I found a company called Medical Supply Corner selling the Droplet needles for $9.99 for a box of 100. I ended up ordering three boxes to spread out the $6 shipping cost. They also have a four box pack for $40 that I did not see before ordering. I used my FSA debit card and the transaction went through. Hopefully the will ship the items to me but I am expecting the order to be blocked, or maybe the SWAT will come knocking to get the needles back.

Walking Outside 2/17/2021

The weather was really nice today so I went for a walk outside my house. Since I received a replacement Apple Watch, I was able to track fitness activities again. I walked 1.14 miles with a pace of 23’03”. I felt mostly fine, with no pain from the transplant incision site. However, my right knee and ankle are still hurting. The pain has subsided somewhat but it is still pretty awkward to walk longer distances.

I remember a year ago, during my heart surgery recovery, I set a goal of joining a 5k run in 2020, and actually run the course instead of just walking the route. Then COVID-19 hit, along with a bunch of small medical issues. Now with the kidney transplant surgery, it feels like I am starting over regarding physical activities.