Cheap Apple Watch Band Update

Remember I bought a cheap metal watch band for my Apple Watch 6? Well, it broke within days. The fit of the band on my Watch was terrible. The metal ends stick out and would either get snagged on clothing. It also did not fit well in the watch band slots. When I tried to take it off again for a closer look, a small metal piece acting as the catch came off, exposing two small springs underneath. However, that means you cannot get the band back into the slot, so the metal band is now basically useless.

I did not deal with this earlier due to the transplant surgery. Evidently, you only get a month for returns. The watch band was from a third party seller but Amazon provided fulfillment services. For some reason, Amazon was unable to provide me with any contact information for the seller, so they were willing to take the defective product as a return. However, they also wanted a 20% restocking fee. This was my only recourse since I could not contact the seller to resolve the problem. Of course I complained on chat and the CSR is giving me credit for the restocking fee. She did let me know that this was a “one time courtesy” even though I spend thousands of dollars every year, and pay for a Prime account. That does not count for shit when it comes to a $3.40 restocking fee on a defective product, which Amazon has no seller contact info, and they are still selling the product. How does that even work?! I left a 1-star review for the product and talked some trash in the comment section regarding Amazon’s stupid policy. We will see if it gets approved and posted.

I commented on the previous post that more and more, the options for shopping is between an expensive product not made in China, and the cheapest crap that are made in China.

kidney4debra

I saw a banner at the corner of Westwood and Veteran today while driving back from UCLA. It basically said “Looking for kidney donor” and a website address. At first I thought it was pretty cool that someone is mounting a campaign to look for a kidney donor, but after visiting the website, I am a bit conflicted.

At first glance, I thought Debra was a younger patient, perhaps spending years on dialysis, and suffering from a genetic disorder. It turned out Debra was a 66-year old woman, and she had not even started dialysis. Her stage 5 kidney disease is likely from years of undiagnosed hypertension (per website). I do not know her lab numbers, but your eGFR has to be lower than 15 to be placed on the kidney recipient list. If she is stage 5, then she should be eligible. The website mentions that she was evaluated for transplant but does not give any more information regarding status. She also has three adult sons but does not say why none of them are a live donor. She is also blood type AB+, which can basically receive a kidney from any blood type. At UCLA, after three years, 50% of patients with blood type AB have received a transplant, while the number is less than half of that for type O and B patients.

Sure, dialysis sucks but it appears Debra is not yet on dialysis because she does not want to take a hit on her quality of life. She also does not explain why her family cannot or will not donate, and has the shortest wait list time for a deceased donor kidney. I am extremely fortunate that my sister was a match and willing to donate, so I do not want to criticize other kidney failure patients. However, it does seem like she wants to shortcut the process. There are hundreds of thousands of dialysis patients that have experienced this loss of “quality of life” she wants to avoid. Should they get preference on a live donor kidney? Similarly, she seemed to have live a full life. Should teenagers and young-adults that have been on dialysis all their life get a chance to live a little? I guess after being on dialysis and living a “diminished” quality of life for almost four years, I’m less sympathetic to Debra’s plight.

If any reader wants to donate a kidney, please check out this webpage at National Kidney Foundation, or UCLA Living Donor Transplant webpage for more information.

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There is a link to UCLA’s Living Donor Program questionnaire at her website. Maybe she is listed at UCLA after all. If she has ESRD for seven years (maybe I read that wrong), and was listed at UCLA, she should have had a deceased donor kidney by now.

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In the US, we do not allow people to buy/sell organs for transplant. I guess the goal is to level the field so wealthy people do not have an advantage on obtaining an organ for transplant. Everyone is placed on a “single” list, and priority is primarily determined by accrued wait time. However, we do not limit people’s ability to spend money on a PR campaign to look for a live donor. You can put up banners, create websites, take out full-page ads in the New York Times, or even put up video messages in Time Square. Steve Jobs listed himself at multiple transplant hospitals looking for a pancreas transplant. He was able to do this because he has a private jet and can get to multiple hospitals on short notice. Surely some of these options are out-of-reach of your average patient on transplant waitlists.

I’ll stop now…

Permission To Drive

🎉 🎉 🎉

During today’s clinic appointment, I met with one of the transplant surgeons. He actually met with my sister for the pre-op and post-op consultations, and was present in the OR during her surgery. I asked him when I could resume driving, since I am basically trapped at home if I cannot drive. He asked if I was taking any pain medications. I was prescribed oxycodone at discharge, but I have not taken any yet. The incision pain has been very manageable; I have not even taken Tylenol for any post-surgery pain. He then told me to hold out my arms and asked if I experienced any shaking or tremors. I think it is one of the side effects of tacrolimus. Finally, he asked if I could apply pressure to the brake pedal without any pain. I joked that my Tesla could drive itself, but with TACC (traffic aware cruise control), the car does a pretty good job braking and accelerating with traffic. I just need to watch out for traffic lights and stop signs.

Anyway, he said it was okay for me to drive so for the next clinic appointment this Friday, I am going to drive my car instead of asking my dad for a ride. This is a huge step for me. I remember one of the anxiety factors during heart surgery recovery was being unable to drive for 6-8 weeks. I believe I received approve to drive after about six weeks but it was an excruciatingly long wait. For me, being able to drive again is the first step towards a return to normalcy.

Medication Side Effects

Every medication is a trade-off between the beneficial effects and the unwanted side effects. Some medications have very minor side effects, while others have more serious ones. I remember taking amiodarone after heart surgery to control my heart rhythm. After reading up on the side effects, I called my cardiologist trying to get off the medication as soon as possible. The list of side effects include pulmonary toxicity, hepatic injury, visual impairment and loss of vision, peripheral neuropathy, and others.

As mention previously, post-transplant surgery, I was given three anti-rejection medications: mycophenolate, prednisone, and tacrolimus. I started with 4 pills of mycophenolate and tacrolimus twice a day plus 4 pills of prednisone in the morning. The latest dosage is now 2 pills of mycophenolate and prednisone plus 4/3 pills (morning/evening) of tacrolimus. With all the side effects from these medications, I was prescribed several more to counted these side effects. Here is a short list:

http://www.med.umich.edu/trans/public/pdf/6_Medications.pdf

I have not experienced any side effects yet, except maybe for high blood pressure and high blood sugar. I believe this is the primary reason I was prescribed an insulin pen, and why I am jabbing myself before every meal. As mentioned above, my prescription for mycophenolate and prednisone has been halved already, but the amount of tacrolimus are back to near initial dosage. I really hope they can further reduce the medication dosage so I can go back to pills to control my diabetes instead of relying on insulin shots.

Another Night At Tiverton House

Last night, my parents and I stayed overnight at Tiverton House. Since I get seven nights free post-transplant, I may as well use them. We shared a dual double room. It was a bit crowded but it was only for one night. No way we could have done that for two weeks.

We got basically the same room I had the night before the transplant surgery, except it was on the second floor instead of third. They were still serving breakfast which consisted of a bag of either cereal and bagel/bread, cartons of milk or yogurt, a fruit cup, and some coffee/tea. Since I had to leave for my appointment, I grabbed a bag, took the bagel and cream cheese, and left the rest for later. The schedule was a bit rushed today since I had an ultrasound scheduled in between my labs and the clinic appointment. Everything got done to schedule so I was finished by about 10:30 am. Labs showed marginal improvement and there were very small adjustments to medication dosage.

The ultrasound was a totally different matter. I’ll probably create a separate post about it later.

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The social worker assigned to my recovery just reserved a room for me for Thursday night. That is two out of seven nights used.

I saw online that you can donate to Tiverton House since one of their missions is to provide free/affordable housing for patients at the UCLA Medical Center. Since I am getting my rooms for free even though I can afford the room rate or I can drive same-day, I think I will consider5 a donation to help out other patients.

City of Orange Business License Tax

Highway robbery!

For several years, I was helping my friend with his company in China. Every quarter, I would take a week of vacation from my day job, travel to China, and help with some finance stuff like planning and fundraising. Anyway, he pays for my airfare, but there are some other travel expenses out-of-pocket, so I file is as business expenses on my taxes. Typically it’s no more than a few thousand dollars a year. This hasn’t been a problem until I moved to the City of Orange. I guess either the IRS or FTB (California Franchise Tax Board) shares my tax data with the city. They came with a demand letter for me to get a business license and pay taxes on my business expenses. Since I have no revenue from my “business”, I end up paying the minimum, which is still $65 or something, and file paperwork. It’s total bullshit. The city does exactly ZERO for me. I don’t have any customers or suppliers. It just expenses from business travel that were not reimbursed.

As I’m cleaning out years of old mail, I found a folder of paperwork related to the business license. I finally got tired of the bureaucratic nonsense and stopped reporting expenses on my taxes. That didn’t matter for the City of Orange. Even though I filled out paperwork to end the business, each year, they would come and demand their license tax. I even found a OMC Violation/Notice of License Due citation. This is several years after I filed multiple times to terminate my “business”. They want me to renew my license (no way) and pay a $50 non-compliance fee. Otherwise they will fine me $1000 and throw me in jail for 6-months, all for $65 for a business tax on a non-existent business. This was back in 2017; I think I ignored it because what else can I do after filing the same paperwork multiple times with no effect.

As I go through old mail, almost every piece of mail from the City of Orange is for more money. I just got something about landscaping going up 14% for the next four years or something. Sewer costs have gone up, as well as a paramedic tax. In fact, I’ve paid the paramedic tax for 10 years. The first time I needed the ambulance, they promptly charged me $1900. It took months to get them to look at their records and acknowledge that I’ve been paying the insurance. I think they just charge you and see who complains. Super corrupt and incompetent.

That is why for every election, in the section for City of Orange, I will chose a random person that is not the incumbent. Sure it probably has no effect on the results, but it’s my protest vote against these corrupt a$$ holes.

High Blood Sugar

A kidney transplant is supposed to fix a whole host of sins. Most of my lab results are much better, but there are still a few problem areas: potassium, blood pressure, and blood sugar/glucose.

Here is a chart from Apple Health of my blood sugar readings downloaded from my Accu-Chek meter. It covers about a month of data. You can easily see when the transplant surgery occurred and I started taking the anti-rejection medications. Prior to surgery, I was measuring blood sugar once a day before breakfast so it’s probably the lowest reading of the day. Even taking that into account, the number are definitely higher post-surgery.

The issue is even with an insulin shot before each meal, the numbers are still pretty high. My endocrinologist doesn’t like the numbers being over 200, which appears to be all the time except in the mornings. She want me to do another injection that has all-day insulin. The HumaLOG I’m taking now is very quick acting but doesn’t last that long. Two insulin injection pens… great.

This either means my blood sugar was high while on dialysis but was getting dialyzed out, plus my old kidneys were not filtering out any natural insulin, hence the low numbers. Or my blood sugar was normal but now the anti-rejection mediations are spiking the sugar levels plus new kidney is getting rid of natural insulin, so I need more. Hopefully it’s the second and the eventual lower anti-rejection medication dosages will fix the problem.

Blood pressure is hight too but I haven’t been able to figure out any patterns yet.

Heading Home

We’re checking out of the Airbnb apartment tomorrow at 11:00 am. I’ve been out of my house since late afternoon of January 26th, so a total of about 17 days. In hindsight, I probably could have saved $3,000 and stayed single nights at either Tiverton House or the Luskin Conference Center had I known about the free nights for transplant recipients.

The Airbnb was okay. The location is great but it’s a apartment with thin walls. We can hear the residents above walking around, and there are occasional loud bursts of music. There are many stores within walking distance, even though half the storefronts are closed up. It’s probably more exciting to live here without the pandemic. I do look forward to moving home since everything is familiar and I only brought the minimum of stuff to pass the day. Not sure when the first clinic appointment will be. They mentioned that maybe they will switch to telemedicine for me, but I still have to get labs done at a UCLA site so probably won’t save any time.

Latest Travel Restrictions

I finally get a kidney transplant so I’m not tethered to a dialysis machine. But due to COVID-19 and anti-mask idiots, the pandemic is out of control in the US, and other countries pretty much shut their borders to American travelers.

This is from momondo. There is a lot of red on the map. From the US, I can travel to Mexico, most of South America, most of Africa, and Middle East. The only countries on the list of interest right now is UK and South Korea. I also have a Canadian passport and a Taiwanese passport. It’s not much better. A lot of countries closed their borders to non-citizens. Both Canada and Taiwan are red for American citizens. Maybe I can still travel there if I pull the citizen card.

Probably shouldn’t travel for a few months anyway. I’m still on a lot of anti-rejection medication. One day…

Writing Blog Posts

I’ve always been a terrible writer. Not sure if it’s because I started my career as an engineer or if I’m just not that creative. I think my mind is more analytical which helped me through engineering school, business school, and my current career. However, I often find myself just repeating facts in these blog posts, and not really telling a story.

I have a few friends that also maintain blogs and some of them are wonderful writers. Even my ex-wife, who only moved to the US during high school, is a much better writer than me. Their writing just seems more expressive and interesting; my posts read like an academic paper. I guess knowing is half the battle. I’m going to try and Goggle a bit to see if I can get any pointers on being a better writer.

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I remember in college, I had to take a lot of history classes. That year, UCLA decided that electrical engineering majors cannot read or write so we had to take either History 1A/1B/1C or Humanities 1A/1B/1C. That’s three college courses where you read and write a lot. I took the History series. I remember I hated writing papers. I would look through the readings, find interesting quotes to use, then use the rest of the paper/essay to connect the quotes. It worked pretty well; I got mostly A’s in my history classes and I took about 8 of them, almost enough for a History minor. I don’t know if any of the papers made a coherent argument but for me, as long as I met the minimum number of words required, I was done. I didn’t have any non-engineering classes for graduate school, and writing for the MBA program was totally different. There we were only allowed two double-spaced pages and 5 exhibits per case write-up. The challenge was making you case in such a limited amount of space. Maybe that’s why my blog posts are kind of terse.

Medical Issues 2/11/2021

I just realized that I haven’t updated this thread in about three months. A lot has changed so here we go:

  • ESRD: it’s been so long that I something thought I’d never be able to say this… kidney transplant appears to be successful; it’s only been two weeks so UCLA is still closely monitoring the new kidney
  • Dialysis access: still there but have not been used for two weeks
  • Cardiac rehab: moot at this point
  • Peripheral neuropathy: this hasn’t changed since it has nothing to do with ESRD; with higher blood sugar due to steroid medication, hopefully it does not get worse
  • Back pain and pressure in chest: same if not a bit worse since I can’t use my abdominal muscles as much during recovery
  • Minimal urine production: huge change; I’m now peeing every 60-90 minutes
  • Insomnia: got better right after transplant but hard to sleep again; maybe when I get home and back to my own bed it will be better
  • Dental issues: ok for now but latest cleaning postponed until after transplant; some sensitivity but not sure if that is normal
  • Endocrinologist: keeps wanting to prescribe new meds and insulin for me, even while I have an entire team of doctors monitoring my blood sugar at UCLA; all the meds are super expensive too… no generics
  • Lump in left leg: seems to be improving as in the lump appears smaller; maybe fluids are draining better with new kidney?
  • Constipation: only for a few days after surgery; seems ok now
  • Ophthalmologist: waiting for next appointment; probably need to see optometrist for new glasses soon
  • Surgery recovery: is going okay; the incision still hurts sometimes and sore other times; there is a stent between the new kidney and the bladder that needs to be removed in two weeks; they said it’s a 5-10 minute procedure; I don’t know… sounds painful
  • COVID-19: have avoided getting infected so far, mainly by staying home all the time except for dialysis and getting take-out food; UCLA got me first Moderna shot right before transplant so I’m scheduled for 2nd shot in two weeks; hope that will help keep my immunosuppressed butt safe
  • Sore leg: ha ha, still hurts when I walk; totally self inflected wound; much better this week though so should be all good soon

The list is still long but much shorter and manageable with the first item, ESRD, resolved. Once I get my second vaccine shot, and more people are inoculated, life may become more “normal” for me, as in being able to travel and meet up with people again. It’s been over four years since I’ve been on an airplane or stayed overnight anywhere outside my house.

Ankle Cramps

One of the side effects of dialysis is muscle cramps. I believe by removing fluids during dialysis, you either become dehydrated, or your electrolyte levels get messed. One of the results can be massive muscle cramps, usually in the lower leg. I’ve had this many times during the first two years of hemodialysis. Once my leg cramped and would not let go for 30 minutes. I was limping for a week. More recently, probably because I stopped peeing, there hasn’t been much cramping because there’s probably too much water in my cells.

Last night however, my left ankle started cramping pretty hard. I had to get up, stand, and stretch to try and stop the cramping. I’m not sure why it started again so suddenly? Maybe I’m not drinking enough and I’m getting dehydrated by the new kidney? Body still adjusting to new levels of chemicals? I know my phosphorus is now on the low side. Does that cause cramping?

Along with the plushie, my coworkers also bought me a 32 oz. Hydro Flask. I have to drink enough water daily to fill the water bottle twice. I don’t think I’m drinking that much yet, but I’m still running to the bathroom every ~90 nevertheless.

Weird Dreams

Since the transplant surgery and recovery in Westwood, I’ve been having more dreams at night. Not sure if it’s because I’m sleeping (a bit) better or there are less toxins in my bloodstream? Anyway, dreams are always kind of weird when you wake up and think back. The latest one is that a coworker is suddenly on dialysis. This new occurrence happened while I was in the hospital for my surgery. In my dream, we talk about it like it’s normal. It felt so real that when I was awake, I though I should call into work and find out what happened. However, other than my faulty memory, I can’t find any evidence of the coworker being on dialysis. So I didn’t call. Probably the right decision; otherwise I’ll sound really stupid when no one know what I’m talking about.

Spotify

I finally pulled the trigger and paid for Spotify Premium. I partially got it for my dad, so I got the Duo subscription. He listens to Pandora all day, with ads. I think Spotify has a bigger song library so maybe he can find some new music. It also has more Asian music so he can search for his Chinese songs.

Another factor was that Tesla added Spotify as an option on the multi-media system. It only works with Spotify Premium but I can stop updating a USB stick with MP3 files, or sync my iPhone and connect via Bluetooth. This way, my custom play lists should appear in the car automatically. Now that I’m on medical leave, there’s lots of time to sit and listen to music. Only downside so far is that there are no lyrics in Spotify. I downloaded MusicMatch but the interface is clunky.

Moldy Rice Cake

We had a food scare. I’m still pretty upset.

My parents’ church decided to give everyone over 75 years old a red bean rice cake. I think it’s to celebrate Chinese New Years. Someone delivered it to our house Monday while they were home, and they brought it to the apartment. We had some on Tuesday morning, and some more this morning. Well, my mom just go a call from a church member saying to look carefully at the rice cake before eating, because some of them became moldy. Sure enough, there were white mold spots on the rice cake that my mom did not see. I ate some both days.

One of the huge food warnings post-transplant is to avoid raw, unpasteurized, spoilt, or moldy foods since my immune system is suppressed by anti-rejection medications. Bacteria present on those foods can multiply rapidly and badly damage the new kidney (and other stuff in the body). I think their explanation was that the place they ordered from forgot to put in enough preservatives so it grew mold pretty quickly. Ugh, I hate this Chinese “chaobuduo” culture, which basically translates to “good enough.” But it’s not. This was actually pretty dangerous. Good thing that 1) my mom battered and fried the rice cake before eating, and 2) UCLA already reduced my anti-rejection medication dosage by ~half so I’m not as susceptible to infections.

I can’t imaging losing the new kidney due to some stupid food safety oversight. Needless to say, I’m not eating anything from my parents’ church for a long long time.

Post-Transplant Clinic 2/8/2021

Third clinic post-transplant and they cut my anti-rejection medication again.

MedicationDischarge2/1/20212/4/20212/8/2021
mycophenolate4 x 250 mg4 x 250 mg4 x 250 mg3 x 250 mg
prediSONE6 x 5 mg4 x 5 mg4 x 5 mg2 x 5 mg
tacrolimus4 x 1 mg4 x 1 mg2 x 1 mg2 x 1 mg

They were also thinking of stopping the tacrolimus today but the test results were not yet available during the appointment. Either they have not looked at it again, or decided to keep the prescription until next time. The result was 4.7, whatever that means.

Other notable lab test results:

  • Creatinine = 1.27 (reference range: 0.60 – 1.30)
  • Non-African American eGFR = 65
  • Phosphorus = 1.7 (referemce range: 2.3 – 4.4)
  • Potassium = 5.4 (reference range: 3.6 – 5.3)
  • Sodium = 136 (reference range: 135 – 146)
  • Glucose = 164 (reference range: 65-99)

All the red blood cell and hemoglobin results are low too, but improving. Maybe it takes longer for the new kidney to produce hormones than to filter blood and remove excess fluids. It felt like the nurse practitioner and attending nephrologist thinks that I’m making progress.

My sister wanted me to ask about the kidney cyst that was found in the donated kidney. That smudge on the CT scan delayed the transplant by over three years. It grew from about 8 mm to 10 mm in size. The nurse said that unless it’s complex and over 6 cm(!), they usually don’t remove it. They will do an ultrasound every year to keep track of it and see if it becomes cancerous. If spherical, then it would be slightly smaller than a tennis ball. I’m guessing that it’s probably long and skinny, and follows the natural pathways inside the kidney. Still, that’s pretty large.

Insomnia Again

Not sure why but suddenly I’m having problems sleeping again. I was sleeping better for a few days after surgery, even though I had to get up often to pee. But now, I’ve been getting up at around 2:00 AM again. I’ve been trying to get to bed earlier, around 10:00 PM to 11:00 PM, but still getting up in a few hours. Last night, I went to bed a bit after 11:00 PM but got up at 1:30 AM, and haven’t been able to fall back asleep. I’m not cold anymore, thanks to my heated blanket. I needed to get up early to go to clinic so I just stayed up listening to music. I finally signed up for Spotify Premium. Let see if it’s worth the subscription.

I hope the insomnia is not affecting my high blood pressure.

Apple Watch Repair

Dang. Barely two months and I have to send my Apple Watch in for inspection. This is the busted EKG problem that started about a month ago. I think that is when I updated WatchOS to 7.3. One day the EKG app was working fine, the next day, nothing.

I was Googling the problem again, and somehow reached an Apple Support page. It gave me the option of speaking with someone now, with only a 2 minute wait so clicked. The CSR called me right away, but he could not troubleshoot it over the phone. I’m massively disappointed since now I’ve integrated my life with the Watch. He was very helpful in setting up a RMA ticket, but the phone is going to be gone fo 5-7 days. I’m using it to track all my appointments and medication schedule so it’s going to suck.

To set up the RMA, he had me unpair the watch which wiped it, but the Watch made a backup on my iPhone. I’m pairing it again so I can at least use it until the RMA box comes. I hope the restore works well; I spent a lot of time custom configuring the Watch.

Still syncing…

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It’s done. Unpairing the Watch from the iPhone is like wiping it clean. After syncing and restoring from backup, it has to reinstall all the additional software. I have a Tesla app installed on my iPhone, which is connected to the Watch, and allow me to see the charge state and estimated range on a watch face. That’s seems to be gone. Let’s see how much stuff I have to manually restore post-syncing.

Alone

Kind of.

My parents need to go back to Orange County tomorrow to get their second COVID-19 vaccine shot. I also have labs and clinic appointment with the post-transplant care team tomorrow. My dad will drop me off in the morning, but they will be on the road when I’m done. The walk from the transplant center office to the apartment is only 10 minutes, but since I tripped last week, my parents think I can’t walk without falling. I didn’t trip walking; I was framing a photo and tripped on some rope… really not applicable to a short walk in Westwood Village.

Sigh…