So, it was not really like that. Nobody yelled at me. The nurse was actually very nice and apologetic that the hospital would not give me the shots.
This is my second time getting Evusheld. The cancer infusion center, where the antibody shots are administered, scheduled today’s appointment for me. Their logic was that since I got COVID, and received additional monoclonal antibodies at the hospital, I do not need the Evusheld shots again. I am unsure if this is just for this six-month period, or if I have immunity for a longer period.
I wasted two hours this morning driving to the infusion center, waiting to check-in, and waiting for them to reject my appointment. It also cost me $2 for parking.
Today has been one of the worst health days since getting my kidney transplant. Why post-transplant? Because dialysis sucks so bad that anything is better than having to do dialysis.
I mentioned in a prior post that my sister’s family all tested positive for COVID yesterday. I initially tested negative, but the results came back positive on today’s retest.
Ugh. I then spent the entire morning calling all my doctors for instructions or to move upcoming appointments. My nephrologist recommended that I go to the ER and get a monoclonal antibodies infusion to help prevent worsening symptoms.
I drove to the ER at 11:20 am and was put in ER room #27 after an hour. I have been to St. Joseph hospital so often that it is like a second home. I then waited for another hour to see a doctor, then one more hour for the pharmacy to prepare the medication. Finally, a nurse came to insert an IV, and infuse the antibodies. The procedure took about a minute, but including the 60 post-infusion observation period, I was there for four hours. While waiting, I was on my work phone rescheduling several meetings scheduled for this afternoon.
IV
The drug they administered was called bebtelovimab, which has to be the worst named medication ever. The nurse could not pronounce it. After leaving the ER, i went home and made some more work calls, then decided to take a nap. I had turned on the AC and a fan, and I was getting some chills under the cover. At some point, I fall asleep and the AC compressor stops working. This happens occasionally at our house. I then woke up with what felt like the worst fever ever. I tried to measure my temperature with my cheap Chinese made infrared thermometer and it gives me 98.4. Since that cannot be correct, i found a under-the-tongue thermometer and it said 99.9. Ugh again. I then go downstairs and continue to nap on the sofa, finally waking up at 9:00 pm. Having noticed the AC problem, I reset the brakers and everything is fine. I also noticed my fever is gone, and my worsening cough reverted to what it ws this morning.
What happened? Did I just have the shortest fever session? Was I delirious? Did the medication kick in even though it was supposed to take 24 hours¿ Right now it is 10:00 pm and I feel ok, whereas I felt like death at 7:30 pm. Super strange.
I am back from my 16-day Europe trip. The trip went mostly well except for one “day from Hell” where we could not get a taxi or van to our Eiffel Tower tour, and we missed our Louvre tour since the tour agency changed the meeting place without notifying us. We also had to walk forty minutes back to our hotel at midnight after a night tour since all the taxis were full during that time.
The food in Italy was great, but we ate a lot of pasta and pizza. We did not eat any French food since our schedule was so packed, and most French restaurants near our hotel were expensive and had non-children-friendly menus. We did eat dinners at a Japanese and a Vietnamese restaurant; prices were like what we have here in Orange County.
We also walked a lot. Some of it was due to the many walking tours, but there was also walking in airports, train stations, and just in general since we did not have our cars. Here is the log from Apple Health app.
On WFH days, there is not much walking since I am in my house all day. Starting June 5th, you can see a significant increase in the daily number of steps. The 17,688 day was the night walking tour and having to walk from Notre Dame to the Louvre (hotel area) at night.
On the health side, I was mostly okay except for two medium intensity neuropathy attacks. We did spend $1,500 on travel insurance, but it was worth the peace of mind. My sister’s entire family tested positive for COVID this morning (day after trip), but I tested negative so far. I still need to test for a few more days, and self-quarantine due to close-contact or exposure to COVID infected persons.
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One other health related item. I packed the wrong medication before the trip, so I had way too much Rosuvastatin and no Metoprolol. Since i did bring Losartan, it was not a big deal to miss the medication for two weeks.
Another refill means another shipment failure. I mentioned yesterday that I will need a lot of insulin pen needles for my trip. Since I am down to my last box, I placed an order for twelve more boxes (1200 needles), and the shipment arrived today.
Or so says FedEx.
Of course, when I went to check my front door/garage/whatever, there was no package. I checked all over the front of my house (it is not that big), and again, no package. I have cameras that record activity on my driveway and front door. There was no FedEx truck delivering packages to my house. This is the second shipment of medication/medical supplies that FedEx has messed up. I assume that the driver delivered my package to the wrong house. I would imagine that FedEx trucks have GPS mapping devices and my address. How hard can it be once you get it into the right truck?
The text notification has instructions for help, so I texted HELP back. I was sent another message with a phone number. By calling the number, you get to open a case with a computer system. It has been 45 minutes and no response yet.
Last time FedEx screwed up, they were delivering insulin pens in a refrigerated cooler. Insulin needles (for those pens) are not perishable so not as urgent. However, I would like to have them for my trip next week.
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Someone just delivered my package and rang the doorbell. I thought it was FedEx, but from my camera, it looks like a friendly neighbor. I do not recognize the car so maybe the package was delivered to the wrong street even.
Hmm, tank top and yoga pants? Definitely not the FedEx driver. I wonder if I should contact FedEx as the driver may go back and look for the package at the wrong house. Anyway, thank you neighbor!
The last set of labs showed high creatinine and potassium. I told my nephrologist I may have been dehydrated, and I have not been too diligent on taking the Lokelma daily. So she gave me another lab order, just for a small subset of tests. Those results came back high as well, so I am now doing a third set of labs. I am still missing a few days of Lokelma since it is a powder you need to mix with water, and you cannot take it within a three-hour window of all the other medications. The creatinine levels were around 1.6. Not terrible but definitely high compared to the normal upper bound of 1.3.
I do not feel I have done anything different, although blood sugar has been harder to control. I am not sure if I am building a tolerance to insulin, or i just need to eat a lot less. I am still on the Natera Prospera DNA test program, but they have not mentioned any signs of kidney rejection.
Even since I started using insulin post-transplant, I have been wondering how the pharmacy knows how many pens to send me. Each time I refill my prescription, they send different numer of boxes of pens. So, I finally looked at the small print on the actual pen.
For Toujeo, each pen contains 1.5 mL of solution and there are 300 units of insulin per milliliter. That means each pen has 450 units. Since each box has three pens and I use thirty-two units daily, the box should last me forty-two days. That is why the pharmacy sent me three boxes when my doctor gave me a 90-day prescription.
For Humalog, each pen holds 3 mL but the solution only contains 100 units per milliliter. Each pen only holds 300 units. My current prescription is a sliding scale, but the base dosage is 8/10/10 or twenty-eight units daily. Humalog comes in boxes of five pens, so each box is good for fifty-three and a half days. Instead of sending me two boxes, the pharmacy sent four boxes instead. Do they assume that I will end up using double the base prescription?
The result is that I have many boxes of insulin in my refrigerator. At lease now I can estimate how many days of insulin I have left when refilling my prescriptions.
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Ha! It says “Units per pen: 450” right on Toujeo’s website.
I received my two shots this morning. The medication is a combination of two drugs: tixagevimab and cilgavimab. I was given the injections at the St. Joseph hospital cancer infusion center. Other than getting the shots in the butt muscle, it was not any different from a vaccine shot. Maybe it is given at the cancer infusion center because the is the biggest immunocompromised population?
The nurse (male) that administered the shot was very nice and we chatted a bit. It turns out his father has been on dialysis for eight years, so he understands the issues of being an ESRD and post-transplant patient. I made sure that I was getting the new, higher dosage just approved by the FDA. They did keep me for about an hour after the shots to check for any adverse reactions, but all I have so far are slightly sore butt cheeks. The injection is only good for six-months, so they already scheduled my next appointment.
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Usually, prescription drugs come with a medication package insert with a lot of small font text. I have seen this with many of my medications, including insulin pen needles. For Evusheld, the nurse showed me the insert, and it was literally blank except for the words THIS AREA IS INTENTIONALLY LEFT BLANK. I know the medication is new and is being used under emergency approval, but there must be some information. I showed my dad and he asked, “You agreed to take shots with no information?”
Last week, my endocrinologist increased my Toujeo prescription from twenty-four units daily to thirty-two units daily. That is like a 33% increase. My existing prescription at the online pharmacy was out of date, so I asked the doctor to send in a new prescription. I had just received a “three-month supply” of Toujeo, but the pharmacy sent out another order. However, they shipped me only three pens (one package) under the old prescription but shipped nine pens (3 packages) with the new prescription. I cannot figure out the math. Also, both co-payments for the insulin were $60.
My current insulin stash. Need to refill the Humalog. Last time they sent me five boxes.
During my (almost) one-year post-transplant call with UCLA this morning, the nephrologist said I could stop taking atovaquone in about a week. This was an anti-protozoa(!) medication usually prescribed to people who are immunocompromised. I was initially prescribed Bactrim(?) post-transplant but was switched to atovaquone after about a month after a test result. It is a liquid medication and tastes horrible. It also stained my bathroom sink yellow. I am super happy that I do not need to take it anymore.
I have been getting non-stop advertisements in Instagram for these special caps for insulin pens. The story goes that if your insulin pen heats up beyond a certain temperature, then the insulin left in the pen becomes damaged and ineffective. It felt like each time I opened the Instagram app, I would see an ad for Vivi Caps.
The price for each cap is $110, though you get a discount online if you buy more than one. I ended up buying one for my Humalog pen from Amazon for $80. A quick Google search did not turn up any negative reviews of the product, but it did seem like there were lots of “paid” positive reviews.
So why did I buy this fancy cap? I do not know if I am even experiencing the issue that the cap is trying to solve. There is indicator on the pen letting the patient know if the remaining insulin is problematic. I do take the pen with me if I am eating away from home, but there is no indication if the product is working or not. There is just a nagging thought that my blood sugar levels are not decreasing enough after insulin shots.
So, is this product real, or an elaborate scam? There is no indicator other than a battery check LED. Since the goal of the cap is to maintain the pen at a cool temperature, there should be some indicators to let the user know the operating conditions. Again, I would have no idea if the product is doing anything.
One of the medications I take is Atovaquone Oral Suspension. I believe it was a replacement for Bactrim, and I have been taking 10 mL each day since med-February. My nurse-practitioner said some patients liked the taste; I have always hated it. For the most recent refill, the medication came from a different manufacturer. Unbelievably, it now tastes even worse than before. The previous medication was made by Glenmark Pharmaceuticals Limited in Mahwah, NJ; the current maker is Camber Pharmaceuticals, Inc. in Piscataway, NJ. Weird that both are in New Jersey.
Looking more closely, it appears that neither company made the medication. Both products were made in India, one in Himachal Pradesh, and the other in Hyderabad. This is a liquid medication so high on the weight vs. value scale. I have always heard that India was a huge manufacturer of generic medication so it makes sense they would also contract manufacture for American pharmaceutical companies.
I am just upset that the new product tastes more horrible then the first.
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I just realized that one of the side effects of Atovaquone is “difficulty falling asleep of staying asleep.” Since you are supposed to not take other medication three hours before/after the Atovaquone, I have been waiting until the late afternoon to take the medication. I should try to take it as early as possible to see if that will help with my drug-induced insomnia.
As I mentioned previously, it is like having a second job managing post-transplant tests, doctor appointments, and medications. After the near-fiasco refill for Tacrolimus last time, I asked my nephrologist to send in the next refill prescription early on October 18.
Since then, I have been checking the pharmacy app. Since Accredo (specialty pharmacy) is part of Express Scripts, there always seems to be some overlap between the two apps. For the past week, I kept seeing the refill as in-progress at Express Scripts, but no on the Accredo app. Today, I finally went to their website on my PC and saw that the order was processed but has a delivery date of November 11.
Everything is good, right? Nope. I received the last order on August 11. I know it does not take three weeks for a refill so maybe they are waiting three months? However, the prescription is for a 90-day supply, and there are 92 days between August 11 and November 11. If we follow that logic, then I will always short by 5-6 days each year. That is not good for something like an anti-rejection medication like Tacrolimus.
Anyway, I called the pharmacy and their system said the refill can be delivered in two days. That is totally great and all, but I wonder what would happen if I did not call them myself? Would the medication still come on Wednesday (unlikely), or will it show up on November 11 when I only have enough on-hand until November 9? On the positive side, the 90-day refill is only $10.
During the past three weeks, I had three separate lab tests. The first was for my regular nephrologist, the second was for my endocrinologist, and the third was for the UCLA Transplant Center. All the appointments were scheduled a week from each other. I tried moving the schedule to reduce the number of labs, but was unsuccessful. The first two were done at my local medical group’s labs in Orange, while the tests for UCLA were their Laguna Hills facility.
Each doctor wanted different tests done, but here are some common ones:
Test/Date
Nephrologist 9/24/2021
Endocrinologist 10/4/2021
Transplant Center 10/13/2021
Phosphorus
2.3 (low)
3.8
Glucose
156 (high)
122 (high)
102 (high)
Urea Nitrogen
29 (high)
36 (high)
31 (high)
Creatinine
1.41 (high)
1.52 (high)
1.34 (high)
eGFR
56 (low)
48 (low)
60
Potassium
4.3
4.8
5.5 (high)
Calcium
10.2
10.5 (high)
10.4
RBC Count
5.92 (high)
5.62
Hemoglobin
18.3 (high)
17.6 (high)
Hematocrit
56.1 (high)
54.8 (high)
I do not know if inconsistent is the right word when I do not know the accuracy of the tests. If the results are plus/minus 20%, then maybe the results are consistent within the error bars. My regular nephrologist did up my prescription for Losartan, which can lower hemoglobin but also lower blood pressure and increase potassium. Maybe that did have an effect since my potassium results do trend higher and blood pressure has been lower in the past few weeks.
My endocrinologist did ask for a bunch of other tests, mostly A1C/Fructosamine and a lipid panel. My cholesterol was fine, but from the test results and the readings journal from my glucose meter, she added more insulin: 28 units of Trujeo and 8/8/10 plus sliding scale for Humalog before meals. Good thing I have a large supply of insulin pens in my refrigerator.
Of course, four insulin shots daily means a lot of disposed pen needles. I filled up my first two gallon sharp container and just purchased two more from Amazon. Now I need to find a nearby hazardous waste disposal center.
I normally take both insulin shots in the morning. One is a long-lasting insulin for the entire day, and the other is a fast-acting insulin taken before meals to mitigate the blood sugar spike after eating.
This morning, the blood sugar reading was 149, so according to the sliding scale from my endocrinologist, I injected eight units of the fast-acting insulin. You are supposed to eat afterwards but I got distracted by some work texts and emails so I did not eat. After about 15-20 minutes, I began to feel warm and dizzy. Having experienced this several times before, I knew my blood sugar was likely too low due to the insulin shot. How low? It was at 80 when I measured it.
Guideline says normal range is 70 to 130, but for me, anything below 90 and I start feeling weird. I quickly took one glucose pill, and ate some crackers. I feel a bit better now, but will probably take a short nap soon since I do not have any work meetings this morning. I can see how insulin OD can be very dangerous.
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Weird. So after the low blood sugar reading, I took one glucose tablet, a protein shake with very low carbs and almost no sugar, half a biscotti biscuit, and about 6 saltine crackers. I just (2:00 pm) measured my blood sugar again, twice, and got 279 and 249. I do not understand why the number jumped that much, even after five hours. So I had to shoot another 10 units of insulin and hope my salad croutons has enough carbs so I will not get low sugar again.
It is not just Amazon. I was waiting for a FedEx delivery of a Toujeo (long-lasting insulin) refill from my mail-order pharmacy. I am down to one final dose so getting the medication delivered today or tomorrow was very important. At 1:37 pm, I get a text message that the package was delivered and left on the “front porch.” My house does not have a porch.
Needless to say, there was no package in front of my house. We have a recessed front door that is not visible from the street, so packages are usually left right at the door. I also checked my two exterior cameras covering the front door walkway and the street, and did not see a FedEx van in any of the saved video clips.
Of course I freak out and call FedEx. The CSR was Indian and very helpful. However, he was not able to see any further information and could only open a trace ticket. First he said they would get back to me within 24 to 48 hours. Definitely not good enough. I explained that this was a refrigerated medicine delivery, and that they need to call the driver ASAP and get back to me in a few hours so I can try and get an emergency refill at my local pharmacy. I felt bad that I was getting upset, but it was not really the CSR’s fault, especially if he was in a call center in India. I did give him a 5/5 on the exit survey though.
Next, I called my mail-order pharmacy to see if they can light a fire under FedEx to get them to find the package faster. While the pharmacy CSR was trying to set up an emergency 14 day refill authorization, the FedEx guy came back and delivered the package. I did not see him, but my dad said he was apologetic, and said my packaged got grouped with a large delivery at another location. My guess is the trace team at FedEx was able to reach the driver and got him to go back and retrieve my package and re-deliver it. It was a stressful 43 minutes but everything worked out well. It was also only one of my two injectable insulins so worst case scenario, I could inject a few more units of the fast-acting insulin and check my blood sugar more often.
After stressing out for a week, I did receive my three month order of tacrolimus from the mail-order pharmacy on Wednesday. The package arrived at around 1:15 pm so I took the morning dosage anyway. If the package arrived after 2:00 pm, then I probably would have just skipped it.
Here is what 630 x 1 mg of tacrolimus looks like:
Each of the white bottles contain 100 capsules. I need to take seven each day so 7 x 90 = 630. I was hoping for further cuts in the dosage but it has gone up by 1 mg daily since my lab results showed low tacrolimus levels.
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Crap! The label says no refills. I wonder why my nephrologist did not give me more refills? I need to take this medication for life, and I do not want to go through this ordering mess each quarter.
Now it is down to the wire. I am down to my last three tacrolimus pills, and I need to take all of them tonight. I covered some of this incident before but basically the tacrolimus is not covered by my work insurance but they did a few courtesy fills. I did not know this and sent the most recent refill to my local pharmacy and the price was ~$140. After many phone calls to my nephrologist, work insurance, and three different pharmacies, I am supposed to get my refill tomorrow. I am already rationing the pills since last week to make it last until tonight so I really need to get the medication tomorrow.
So this morning, I check the mail-order pharmacy website, and it said the order was still processing. It also says I am still scheduled to receive the pills tomorrow. Hmm, that sounds a bit optimistic so I called the mail-order pharmacy again; this is the fifth or sixth time in a week on the same prescription. The automated system also said it was still processing so I asked to speak to a representative. She looked up my order, placed me on hold several times, and finally said it will ship today via UPS next day. There is no tracking number, but they will send that tomorrow as well. Option C is still open if something goes wrong. I will then need to call UCLA Pharmacy for a refill on my old order (less dosage) and pick it up in person tomorrow. That will be a 3+ hour drive (and $14 for parking), but if the mail-order shipment does not show up, I will not have any other choice. There is no Option D.
Also, I really hate the voice response system that most companies are using now. In the old days, it was a live person answering the phone and redirecting your call. I know that it is inefficient and boring, but it is faster and more convenient for the customer as long as there are enough people to answer the phone line. The “press #” system is okay too but they always lie and say the menu has changed each time to make you listen to the entire list of options. The worst is the “say xxx” to move forward in the menu. On my call to the mail-order pharmacy, I had to yell out my birthday twice, since the system did not get the right date at first, my ZIP code twice, and “representative” three times when the automated system did not have any useful information. It is not too bad when I am at home, but I look like an idiot when I have to do this at work or out in the public.
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Update: 8/10/2021 8:42 pm
Well, that the last three tacrolimus capsules I have and I took them for tonight’s dose. Again, I am supposed to take four capsules each evening as of last week, but had to take only three to ration my supply. I did receive a text from FedEx (not UPS as the pharmacy stated) that a package will arrive by 8:00 pm tomorrow. For sure I will miss tomorrow morning’s dose but I think skipping one time will be okay.
Yay! I got my third Moderna vaccine shot today. I did end up driving to work for the vaccination, and they did not reject me for having two previous shots. Of course, I see this on the news as soon as I get home from work:
Supposedly now the FDA and CDC are working on getting a booster shot approved for immunocompromised people. I would like to think my message to the CDC (and subsequent review) helped, but it is pretty unlikely.
Back to what happened today. As I mentioned before, I pre-registered online but did not get a rejection email so I went to our cafeteria at around 11:30 am. There was only one other person in front of me, and only about four people in the post-vaccination waiting area. The intake person followed up on some medical questions, but she did ask whether this was my first or second shot. I said second because I had to fill out the date of my “last” shot online. She then sent me to a nurse. While she was prepping my arm, she also asked about my vaccine card. Of course I did not have it, so she got out a blank card. She then asked the supervisor what to write, and also asked me where I got my first shot. When I said UCLA, they said they could look it up online. I thought you needed a PIN to access that data for individuals, but maybe they have different rights. Anyway, the supervisor sees that I already had two shots. I basically told them that my first shot was right before transplant surgery, and I was pumped full of immunosuppressive drugs right after. I also said (embellishing a little) that my doctor believes that shot was ineffective, and that I should get another shot ASAP. The supervisor looked at me in the eye, and said, “OK.” The nurse then gave me the shot, filled out the second line on the vaccine card while leaving the fist line blank, and sent me on my way. Easy peasy.
It’s been about 10 hours and no significant reaction year. My arm was okay right after the shot, but the injection area is more sore now. I also felt a bit lightheaded after climbing the stairs after dinner, but I experience that occasionally due to low blood pressure. Several people told me that the worst reaction will come tomorrow, if at all, so I am hoping I feel terrible when I wake up tomorrow. 😅
It has been a stressful morning. I checked my tacrolimus refill on the app from my mail-order pharmacy, and there was a big warning sign
The order was “place” on Tuesday and seems to be stuck. I called the mail-order pharmacy and they said they were waiting for a callback from my nephrologist’s office. I then call my nephrologist and they said my doctor was out of the office. I reminded them that I run out of this anti-rejection medication next Tuesday, and that is with taking the lower dosage from the previous refill. Well, at least they are responsive. The office staff is getting another nephrologist in the office to sign the prescription, calling the mail-order pharmacy, and then calling me to give me status. Still, a bit stressed out that I may run out of my primary anti-rejection medication.
I also have not heard back from work or USC Pharmacy on my pre-registration for an “illegal” second vaccination tomorrow. This is stressing me out as well. I fully expect to be rejected, but was hoping to hear back before driving 40 miles to work in LA traffic. Wishful thinking, I know…
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Ugh, 2:45 pm and no updates. I just called the mail-order pharmacy and they still have not heard from my nephrologist’s office. Not sure what is going on. I guess I have to harass them again.
I do have plan C though. Plan A was getting it from my local pharmacy and that failed. Plan B is what I am dealing with right now with the mail-order pharmacy. Plan C is refilling my existing prescription (though for slightly less dosage) with UCLA Pharmacy.
Man, I did not expect to do live blogging. Just called my doctor’s office and they faxed(!) in the prescription within 15 minutes of my call this morning. I am guessing that it is sitting in some queue that gets cleared periodically? Hopefully this resolves itself by tomorrow morning. If not, then I can call UCLA for the refill and either go personally to get it, or have them mail it to me.
As I mentioned previously, my local pharmacy wanted $140 for filling my updated tacrolimus prescription. I called and left a message with my work insurance provider to figure out what changed since I was only charged $10 last time. Before they had a chance to reply however, the online pharmacy called. They get a notification whenever an out-of-network prescription order is placed at my local pharmacy. I believe I am supposed to fill those at the mail-order pharmacy to save my company some money.
Anyway, the nice lady explained that tacrolimus was not covered at local pharmacies. They do allow one or two courtesy fills so that is why my previous prescription only cost $10. They also said they tried filing the claim with my work insurance and it was accepted. I was worried since the online pharmacy did not accept Medicare Part B for prescriptions. Long story short, the online pharmacy will contact my nephrologist to resend the prescription to them for a three month fill, and I will only pay $10 total.
Glad that got resolved. Only took calls to my doctor, my insurance, and three different pharmacies.
Life with chronic diseases 