Category: Health & Wellness

Nephrologist Visit 20230428

I had my quarterly nephrologist visit today. It went well and I only had one prescription change to increase my Losartan dosage to 100 mL. I did my labs last week and the results were similar to previous tests. Here are some of the items that are still out-of-range:

  • Creatinine: 1.50 mg/dL
  • eGFR: 55
  • Potassium: 5.4 mmol/L
  • Urea nitrogen (BUN): 31 mg/dL
  • Hematocrit: 51.0%
  • Vitamin D: 27 ng/mL

All the other stuff were within Quest Diagnostic’s normal range.

The most important test result is probably for creatinine. This is a major indicator of kidney failure. Normal range is below 1.30 mg/dL for males. Post-transplant, my results have been from 1.40 to 1.60. Both the UCLA transplant team and my local nephrologist are good with this result. They are more worried if the number changes quickly for the worse. My blood pressure has been higher lately hence the increased Losartan dosage.

My nephrologist is also giving me a referral for a sleep study. I have been a snorer for as long as I can remember, and my sister said I sometimes stop breathing when I sleep. I have been very tired post-transplant so maybe my undiagnosed sleep apnea and anti-rejection medication is preventing me from sleeping well at night.

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I also got a reply from my endocrinologist. I have not seen her in about a year and all my prescriptions are running out. Previously, her office sent my continuous glucose monitor (CGM) to Edgepark because the reader and sensor were considered durable medical equipment (DME). I hate Edgepark. It has been a huge struggle to get anything priced and delivered. I managed to get a reader and fourteen sensor discs from them over the past twelve months. Since my prescription ran out, they were unwilling or unable to get a refill and instead cancelled my order. Sigh.

In my endocrinologist’s reply, she said she sent refills for my insulin and regular glucose test strip to my online pharmacy. She also sent a CGM sensor refill order to the pharmacy instead of Edgepark. I hope that gets processed.

I think the DME part of the prescription was the dedicated Libre 2 reader. Ironically, there was a warning sent out as the reader’s Lithium battery may overheat and catch on fire. Now I am using the Libre app on my iPhone to read the sensor, which means that I did not need the dedicated reader in the first place. Stupid.

Late Night Walk and Chicken Fingers

As I was going to bed last night, another peripheral neuropathy attack started. I found a simple diagram online and will start tracking pain location each time.

So, this time the pain was on the inside of my right foot. It just started suddenly and quickly got worse. At some point, I decided to try and go take a walk to see if that would relieve the pain. This was my first outdoor walk in a while after COVID.

It was a short 0.9 mile walk at 12:30 am. Since I have not exercised, I was fully expecting to run out of breath right away. However, I managed to go about two-thirds of a mile before feeling anything. When I experienced plural effusion previously, I could not even walk to the end of the block. Still, I am having some issues climbing stairs without breathing hard, so I need to get back to walking more.

After the quick twenty-minute walk, I felt really hungry since I did not eat dinner. At 1:00 am, the only food options were In-N-Out or Raising Canes. I chose chicken fingers. Even at 1:30 am, the Santa Ana location still had many customers. Surprisingly, I was fourth in the drive through line. The location was open until 2:30 am.

No Masks

I went to my local medical lab for a blood draw this morning. This is the same lab that I have gone to for the past ten years. During COVID, there were strict masking rules, like all medical facilities at the time. Today, the lab check-in receptionist said that masks were optional when she saw me putting on my KN94 mask. Indeed, I only saw one other patient wearing a mask, and only one lab staff out of ten wearing a mask.

Is the pandemic truly over? There has been little news about vaccine boosters and new variants. In the past, if you Google COVID, there is an interactive case count app on the result page with data from the New York Times. That is no longer available. I had to go to the CDC website to find this:

It is hard to see but the weekly case count is negligible. Should I still be worried? It has been almost six months since my last bivariant vaccine booster. Should I get another one?

Swytch Electric Bike Kit

To help ease back into bike riding, I purchased a electric bike conversion kit from Swytch. There was a lot of social media advertising, and I got sucked in. The kit was not cheap, but electric bikes are expensive. I have a very new used bike I bought before dialysis. I believe I rode it twice and it has been sitting in my garage. It is a Trek 7.4 FX hybrid. They were available from 2015 to 2016 so my bike is at least seven years old.

I opened the box and tried to install the kit on my bike today. My sister was here to try and move the tire and tube from the old wheel, but she was unsuccessful. The old tire is probably too stiff to come off the wheel so I will need to go to a bike shop. We also tried to fit the motor wheel on the bike, and we were also unsuccessful.

The instructions said the slot needs to be 9 to 10 mm. I measured the slot opening and it was exactly 10 mm. However, the axle bolt would not fit. I am unsure what to do. File down the bolt or the slot? I sent an email to customer support, but they are in the UK, and off the entire weekend for Easter. I thought I would be riding this weekend but that is unlikely at this point.

Medical Insurance: DEXA

Since I am taking prednisone for anti-rejection, my nephrologist asked me to get a DEXA scan to check my bone density. I read online that taking prednisone long-term has many side effects, including osteoporosis.

The National Osteoporosis Foundation (NOF) recommends obtaining a DEXA if a patient is on prednisone or an equivalent of 5 mg/day or greater for 3 or more months.

https://www.rheumatologyadvisor.com/home/decision-support-in-medicine/rheumatology/steroid-induced-osteoporosis/#:~:text=The%20National%20Osteoporosis%20Foundation%20(NOF,for%203%20or%20more%20months.

So today I called the St. Joseph outpatient pavilion to schedule an appointment. I get most of my scans done in the second-floor radiology department. After being put on hold for five minutes, I was told the diagnosis code provided on the order was not covered by Medicare. The code was Z94.0: kidney transplant status. The scheduler said Medicare needs a code like osteoprosis, high calcium, or something like that. I Just called my nephrologist’s office to let them know and hopefully they can change the order.

I have had many medical procedures and appointments in the past seven years, and I am pretty satisfied overall. The worst part of the experience was insurance. I have both Medicare and Blue Shield. I pay almost $600 per month for Medicare, and it only covers 80% and does not cover medication. My work insurance does not have any premiums and usually pays for most things. By having two insurances, I end up paying more, not counting Medicare premiums. Recently, Medicare rejected a claim due to me not meeting my deductible. Without Medicare, my work insurance would pay for it, but since it is secondary, Medicare gets to decide how much work can pay and it is less than if I did not have Medicare. WTF?

CGM Adhesive

I accidentally smacked the side of my arm on the bedroom door frame today. Unfortunately, the continuous glucose monitor (CGM) was right there, and about half of it came off my arm. I managed to hold it against my arm and was happy that the scanner was still able to read the meter. I also stuck a clear waterproof patch on it. However, I tried to read it a few hours later and it gave me a read error. Luckily, there were only a few hours left in the 14-day lifecycle, so I did not lose much.

Retina Specialist 2023

I just got back home from seeing a retina specialist. For the past few years, I have seen this doctor each year. With my diabetes history, my ophthalmologist wanted a retina specialist to keep an eye(!) out for any retina damage.

This time, the appointment lasted less than half-an-hour. About ten minutes of that was some paperwork and waiting, and fifteen minutes of for some retina photos and a quick eye exam. I only saw the actual doctor for five minutes; he looked into my eyes using the contraption above. Even for that brief encounter, he brought a guy to take notes on the computer for him. I wonder how much his office charges for the appointment. I will probably look it up later using insurance claim records from last year.

After looking in my eyes, he said that not much has changed. There is still a thin membrane over my retinas but currently not an issue. There is also come retina damage in my left eye, but also not urgent. It was basically the same results from last year, and that is good news.

Health Equity CSR

Ugh. So Costco managed to screw up billing my FSA order. First, two of 12 items never showed up. I have a video of the UPS delivery, and he clearly drops off five packages. However, there were only ten items in those boxes/packages, so I filed a claim on Costco’s app. Surprisingly, they immediately shipped out replacements at $0. Did their system show that the items were not shipped? My previous order info still states that everything was shipped and delivered.

Next, Costco billed the entire amount of $300+ to my FSA card. That is fine, but they then charged again as individual items were shipped out. During the billing frenzy, Costco also issued a refund for the original amount. That is great for a credit card with a high limit, but the FSA card has a limited amount of funds that I am trying to deplete. The credit transaction takes much longer to process so I am showing a negative balance for 2022. I just called Health Equity and spoke to a CSR. She said that the credit takes three to five days to clear. However, I have a specialist appointment in about an hour, and additional charges to the FSA card will likely go against the 2023 balance. Well, that sucks because I am trying to spend the remaining $90 from 2022. I can see the $300 credit Costco appear on the account one day before the spend deadline and I will lose the $90. Not a huge deal but I hate bureaucratic bullshit like this.

Also, I had a challenging time speaking with the Health Equity CSR. Right away she said I sounded metallic, like a robot. I was using my cell phone directly (no mic or speakerphone) so there was nothing I could do to improve sound quality. Then I had difficulty getting her to understand my issue. It really sounded like a comprehension issue on her side. In the end, the call was mostly useless, and I would just have to wait until the credit showed up on my card.

Neuropathy 20230226

Every time a new attack occurs, it feels like the worst one ever. The top of my right foot near the toes just started hurting and it already feels like an eight on the pain scale. Usually, the pain and numbness get worse over time before the pain subsides. It is hurting so much that I cannot even pinpoint the pain. The entire front of my right foot is hurting and very numb.

Lately, I have been getting a pain attack every few days. This sucks.

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I was pretty happy when the pain started fading after only a few hours and I fell asleep for a few hours. I just woke up at about 4:00 am. The pain is gone in my right foot, but a new attack just started in about the same area on my left foot.

I just booted up my work computer. May as well get some work done since I am not sleeping for the next few hours.

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Awesome! It is now about 5:00 am and the pain in my right foot has returned from yesterday. I guess we are back to double neuropathy again. Remember, when you feel like your life sucks, it can always get even worse.

Double Neuropathy II

I was hoping the last time was a one-time event. It is not.

I fell asleep at 8:00 pm last night and got up at 1:00 am this morning. Soon after, the insole of my left foot started hurting. I hate it when neuropathy hits that spot because usually it is very painful. While that was happening, toes in my right foot started hurting. I said “toes” because the pain is so widespread, I cannot even tell which toe is hurting. So right now, I am getting shooting pain in both feet.

Well, this is going to be a shitty Sunday.

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This also meant I did not eat dinner last night. I miss dinners quite often now, especially on days when I go into the office. Usually I am so tired that I just fall asleep on my bed as soon as I get home.

Double Neuropathy

For the past ten plus years, each peripheral neuropathy attack has been in just one location. It changes for each attack, but it was never in more than one place each time. I remember thinking that it would suck a lot more if I get multiple attacks at the same time.

Well, that day has come.

I got an attack in my left heel yesterday. I was going to stay home and rest, but I was having issues with my home/work computer, so I drove into the office with this massive pain in my heel. It sort of backed off a bit during the day, but when I got home last night, the attack picked back up. However, this morning, a new attack started on one of my left toes while my heel was still hurting.

Arg, today is going to be a terrible day. 😭

I am eyeing my stash of expired Percocet pills.

Post Blood Draw Bruising

So, I was already not too happy with the mobile phlebotomist that came to draw my blood this past Wednesday. She was not wearing a mask and did not put one on when drawing blood.

I noticed today that the insertion site has a small bruise. She did miss the vein on the first poke and had to move the needle a bit after insertion. This is not uncommon, though it has never happened to me with the prior mobile phlebotomist. Even with blood draws at a lab, bruising only happened two or three times before, even though I have had well over a hundred visits.

There was also some pain during the blood draw. Again, this is not uncommon. I probably rate it a three on the pain scale.

January 2023 Test Results

I originally scheduled an appointment with my nephrologist for January 6th. I totally forgot about this over the Christmas and New Year’s holiday and had to postpone the appointment to January 19th so I can get the blood draw for lab tests done. Even with the additional two weeks, I still procrastinated and barely got the lab draw before my new appointment time. Even though there was a two-day gap, most of my test results did not show up in time for the appointment.

Anyway, the results showed up today in the myQuest app. Here is a summary of important items:

Creatinine was high at 1.61. The normal range is up to 1.30. However, I have never been at 1.30 post-transplant, and results are usually a bit high. I also think I was a bit dehydrated on lab draw day so my doctor asked me to hydrate, and we will wait for the next set of results.

Hemoglobin is still high along with the correlated Hematocrit value. It is not any higher than prior tests so my doctor probably will not do anything different. I am unsure if these results were available during my appointment.

This test shows I have COVID antibodies. Of course, with so many different shots and getting COVID in June, this result is mostly useless. Antigens from getting COVID six months ago is likely gone by now, so these antibodies are either reaction from the bivalent vaccine booster, or the last Evusheld injection. From past vaccine experience, I have only minimal reactions, so the test results are not likely from the vaccine booster. We know the Evusheld antibodies will trigger the test result but are not really effective versus the latest BQ variants. The end results is regardless of the test results, I am likely not protected from the new COVID variants.

There was one more flagged test result for low Vitamin D. I have been taking one gel capsule daily. My doctor will likely increase that to two. These are over-the-counter stuff from Costco anyway.

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I forgot to mention that my Tacrolimus reading is low-ish at 5.5. I cannot remember what UCLA recommended, but five to nine sounds correct. My prior test result at UCLA was 10.5 so they reduced the prescription. We will see if my local nephrologist will raise it again.

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One more. I spoke with the Natera researcher at UCLA transplant center. I asked about test result feedback since I rarely hear from them, other than quarterly blood test lab draws. He told me according to their research criteria, there is no sign of organ rejection so far. 🎉

COVID Exposure Notification II

I got another one today.

Since the notification only gives you a two-day window and no location, I have no idea where the close contact may have occurred. This system probably works better when everyone is in lockdown and not leaving their house. Since life is mostly back to pre-COVID norms, these exposure notifications are mostly useless.

In this case, the only place I visited on January 19th was my nephrologist’s office, then the drive-thru line at Raising Canes. On Friday, I did go to work so there was “close contact” with at least one hundred people? I guess I should test myself just in case I got infected with COVID again.

Heating Options

After getting sticker shock from seeing estimated gas bill prices, I have been lowering the setting on my thermostat.

Thermostat SettingEstimated January Bill
71°F$335
68°F$287
64°F$240

However, 64°F feels really cold in the house. At night, I am only in the master bedroom. I just purchased a large electric blanket and put it under my fitted sheets. It uses very little electricity, and it heats the top of the mattress. I also have the oil-filled radiator turned on, so it is quite warm in the room. During the day, however, it is cold in the rest of the house, especially the office.

To keep natural gas usage low, I just purchased three space heaters from Amazon. One is a whole room heater to replace/supplement the radiator. The radiator works fine but takes a long time to heat up. I can use the heater/fan to quickly warm up the room, then switch to the radiation. The other two are personal heaters. I am putting one in the bathroom, so I do not freeze after showers, and the other in the office.

Throwing Up at Work

To celebrate the completion of a large project, we had lunch catered today at work. The food was from a local Mediterranean restaurant with chicken kabobs, rice, salad, and pita bread. The was the second time we catered from this place in the past month, and the food is pretty good.

There were about twenty people in one of the larger conference rooms. I grabbed a plate of food, sat down, took three bites, and felt the immediate urge to throw up. I ran out of the conference room and made it to the bathroom before I threw up all the food I had just eaten. I threw up a lot after my bypass surgery and lost a lot of weight as a result. However, I have been fine for the past two years. The food tasted fine, and I managed to finish it after taking a break. I am still uncertain about what happened.

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The food came from a local chain called Chicken Maison. Their restaurants are mainly located in the South Bay, but they have two locations in Orange County. I may try getting take-out from there for our next family dinner.

No COVID Protection

I saw a post on Reddit about transplant patients being told to stop taking Evusheld. I just got my shots on December 1st. I did some more research and found even worse news.

The Food and Drug Administration on Wednesday ended its emergency authorization for the only remaining Covid-19 antibody therapy cleared for use, saying variants that render it ineffective are now dominant in the United States.

The news about bebtelovimab makes official what has been anticipated for several weeks, as the Omicron sublineages BQ.1 and BQ.1.1 have been growing in prevalence. Still, it comes as a blow to both providers and patients who are at risk for more severe outcomes. The rapid evolution of the SARS-CoV-2 virus had already knocked out several other monoclonal antibodies for the treatment of Covid.

Eli Lilly, the maker of bebtelovimab, has stopped the commercial distribution of the treatment, the FDA said. Various companies are working on updated antibody therapies, but none appears close to being authorized.

https://www.statnews.com/2022/11/30/covid-evolution-wipes-out-another-antibody-treatment-threatening-the-countrys-medicine-cabinet/

The article goes on to state that Evusheld is also not effective against the new “BQ” variants: BQ.1 and XBB. BQ.1 is a subvariant of BA.5, which I got on the way back from Paris back in June. XBB is a combination of two BA.2 variants. BA.5 and BA.2 caused the recent bump in cases over the summer and is causing havoc in China now. I guess the two new mutations can evade injected antibodies.

This totally sucks for me. Due to anti-rejection medication, my response to COVID vaccines have been minimal, even though I just received my fifth shot, a bivariant booster. I also got both Evusheld and bebtelovimab this year, but evidently, they are not effective against BQ.1 and XBB. It is likely I will start working mostly from home again until there is updated medication available. 😱

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In hindsight, I probably should not have attended our company’s party yesterday. It felt like there were 10,000 people in attendance.

Another Mask Mandate?

I have been slacking at work with regards to wearing a mask indoors. I still wear a KN94 mask when I go to crowded areas but have mostly been maskless at my desk. However, unlike in previous months, I have been going into the office almost every day. Now there is news that Los Angeles County may bring back an indoor mask mandate again. Let the whining begin…

https://www.latimes.com/california/story/2022-12-02/how-close-is-l-a-county-to-new-covid-19-mask-mandate

In what has now become a pattern during the pandemic, coronavirus cases are rising as we enter the holiday season in L.A. County.

It is still far from clear how big a potential winter surge could be. Some officials are optimistic the wave will not be as bad as past seasons.

But officials warn that continued spikes in COVID-19 could bring a return to an indoor mask mandate.

Looking at the new case trend, the number continues to grow over time, though not very quickly. Maybe it is the coming flu season that has the public health officials worried?

The case rate in Orange County is lower. From the chart, Los Angeles County is averaging 3000+ cases daily, while Orange County is at 320. LAC has more people but only a bit over 3x OC so the infection rate is definitely much higher.

Evusheld Shots II

My nephrologist scheduled me for another round of Evusheld shots last week. This time there were no issues since it has been five months since I had COVID.

I received the shots at the cancer infusion center. This time it was a female nurse. I know they are all very professional, but I felt I had to pull down my pants more than the previous time. The shot locations definitely feel a bit lower down. They kept me for about 45 minutes after the shots to see if there were any adverse reactions. Other than a sore butt, everything was fine. This plus the bivalent vaccine booster from threes ago should help prevent against another COVID infection.