I got another blood test on Monday, and it shows my tacrolimus levels are twice what the target is. My UCLA nephrologist said it was the anti-fungal medicine interacting with the tacrolimus, driving up the test results.
I do not remember why the number shot up to ~40 while I was in the hospital and why no one mentioned it to me. It was also before I started taking the anti-fungal medicine so who knows.
The side effects, especially insomnia and dizziness, have been bad. I passed out for a brief second and fell last Thursday at my primary care doctor’s office. I am afraid of passing out even to go to the bathroom. I also have not slept much during the past four days. I must take the anti-fungal medicine for another seven days so I hope this episode of side effects will taper off and I can go back to feeling normal.
First just let me show them in a list from Mayo Clinic:
More common
Abnormal dreams ✅
agitation
chills ✅
blurred vision ✅
confusion
cough ✅
diarrhea ✅
dizziness ✅
dry mouth ✅
fever
flushed, dry skin ✅
frequent urination ✅
fruit-like breath odor
general feeling of discomfort or illness ✅
headache
increased hunger ✅
increased thirst ✅
increased urination ✅
itching, skin rash ✅
joint pain
loss of appetite ✅
loss of consciousness ✅
loss of energy or weakness ✅
mental depression
muscle pains, trembling, or twitching
nausea ✅
pale skin
runny nose ✅
seeing or hearing things that are not there
seizures
shivering ✅
sore throat ✅
stomach pain ✅
sweating ✅
swelling of the feet or lower legs
tingling ✅
trembling and shaking of the hands
trouble breathing
trouble sleeping ✅
unexplained weight loss ✅
unusual bleeding or bruising
unusual tiredness or weakness
vomiting ✅
Less common
Chest pain
increased sensitivity to pain
muscle cramps ✅
numbness or pain in the legs ✅
ringing in the ears
Rare
Enlarged heart
flushing of the face or neck
weight loss ✅
Out of the plethoria of items, I have had the joy of experiecing about one-half of them. The latest theory is by taking the anti-viral aimed at my throat infection, I need to take down my tacrolimus intake by one, leaving the doctors without much room to manueuvr. I need to take tacrolimus but with only one pill, the test returns 12.0. I was nornally at 6-8 previously, but now they want it to be over 10.0, whlich will trigger more side effects in quantity and intensity.
Looking through all the documents the hospital generates, I dug around and found a Tacrolimus tapering schedule based on body weight:
It is a total shit show. I have been put on insulin since my kidney transplant and in the last four and a half years, I cannot make any sense of the pricing. I have paid $0 for an insulin pen, but also $6, $12, or even hundreds for the same pen. Each time I switch insurance or the insurance company changes formulary, the pricing goes to hell. There are manufacturer copay coupons that seem to work once then disappear.
I am reviewing my insurance copay charges for the past month and I see a $227 charge for six Toujeo (long-acting insulin) pens. They come in a box of three and was supposed to cost me $60 for three months. Why $227 suddenly? Our company insurance changed from Optum to Costco for mail order. Why should that matter? Who knows? 🤷🏻♂️
What is worse, Costco called me to warn me about the high copay so I placed the order on hold to figure out what is happening. Then the order ships. I check Costco’s Rx website and it says $35. That seems like a good price. They next ship Novolog pen infills without a price and luckily it was free this time. Complete chaos, even for me with a thirty-year finance career.
So the end result was that I got my both my long-term and short-term insulin for the next three dollars for $35 total.
I think I have insomnia from prednisone withdrawal. I was going to post something last night because I was wide awake at 3:30 am but decided to watch an anime movie instead. For weeks now I have not been able to sleep more than two hours at a time before waking up, and it is getting worse. I fell asleep around 5:00 am this morning and woke up at 7:00 am. Usually, I end up sleeping during the day since I am so tired, but the last two days I have not been able to take naps either. It is like pulling all-nighters in college.
I have tried taking Tylenol PM, which has diphenhydramine (Benadryl), and melatonin, but neither works. I have access to prescription sleep medication but with so many other pills I must take, I really want to avoid another one.
I did not know this was a real thing. I always thought withdrawal was something associated with addictive substances like alcohol, tobacco, or opioids. Anything that adds or removes chemicals from your body consistently can be “addictive” over time.
Predisone withdrawal, or steroid withdrawal syndrome happens when you stop taking a medication or taper off too quickly after prolonged use. I started taking prednisone right after my kidney transplant in January of 2021. For most of the period, I needed to take 5 mg of prednisone daily. I knew there were many nasty side effects with prednisone, but I have not seen the entire list.
Common physical symptoms:
Severe fatigue and weakness: Feeling unusually exhausted and lacking strength.
Aches and pains: Muscle aches and joint pain are common as inflammation returns.
Gastrointestinal issues: Nausea, vomiting, loss of appetite, stomach pain, and diarrhea.
Headaches: May range from mild to severe.
Dizziness and lightheadedness: Often caused by a drop in blood pressure.
Weight loss: May be experienced due to loss of appetite and other issues.
Fever: Some people may experience a low-grade fever.
Mental health symptoms:
Mood changes: Can include irritability, mood swings, anxiety, and depression.
Other psychological effects: In more severe cases, delirium or confusion can occur.
I believe in combination with the radiation treatments, most of my suffering in the past three weeks can be attributed to withdrawal from prednisone after four and a half years of daily use. I have experienced major reaction listed under the physical symptoms section. At least I am no longer taking any prednisone related to the kidney transplant nor the delayed tolerance study.
I went to see my new family practice doctor yesterday. He did tell me that my previous primary care physician at the same office left. That is why I could not make an appointment with her again. The new doctor seems very personable and was attentive in listening to my issues.
I was there mainly to address my recent panic and anxiety attacks. I also mentioned that I would like to see if there is anything for my diabetic peripheral neuropathy. I was expecting something like Zoloft or Xanax for the anxiety, and maybe gabapentin or Lyrica for the neuropathy. Instead, he prescribed me some Cymbalta. I have seen the commercials but did not really know what the medication was for.
At first glance, Cymbalta seems to be marketed as an anti-depression medication. It is a selective serotonin and norepinephrine reuptake inhibitor (SSNRI). The doctor explained that Cymbalta should address both the issues I presented to him regarding anxiety and neuropathy.
Duloxetine is used to treat depression and anxiety. It is also used for pain caused by nerve damage associated with diabetes (diabetic peripheral neuropathy).
Since Cymbalta takes time to address anxiety, the doctor also prescribed me hydroxyzine or Atarax. This medication is “used to help control anxiety and tension caused by nervous and emotional conditions.” This is supposed to be fast acting and also helps with sleeping. He said this is an antihistamine, bascially like Benadryl. Cymbalta was not covered by insurance, but Albertsons pharmacy let me have it for $14.
Last night, I took one pill each of the Cymbalta and Atarax. Very quickly I felt my cold chills fade but also drowsy at the same time. When I got up to use the bathroom during the night, I felt my neuropathy was worse than before. I managed to fall asleep, and I do feel better this morning. The neuropathy did settle down, though I cannot determine if it was better or worse than before taking the new medications. The anxiety symptoms were absent, but as I am typing, I am starting to feel chills again. Hopefully all this will improve over time.
It is good to have friends. I was worried about the time gap between having my health insurance terminated and when COBRA kicks in and communicated that to the benefits director at my old company. She was able to send me a PDF of the actual COBRA enrollment form, then ask for emergency processing once I enrolled and paid. She gave me a call yesterday telling me that the online pharmacy already has my COBRA information, and Blue Shield should have the same by Thursday.
I went online yesterday to the online pharmacy and was able to see all my information again. The benefits director mentioned that I was added via an emergency authorization, but next week’s update may overwrite the list until my name is added with the regular process. I quickly refilled all my medications in case this happens, and the copayment came out to $270.
I am glad this is taken care of since it resolves one of many issues I am dealing with post-retirement. It has not helped reduce my anxiety symptoms though.
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My friend that works at a pharmacy brought over a 100-pill bottle of prednisone. She said it only cost them $5 to purchase wholesale. My 90-day supply of the same 5 mg pill cost me about $8 of copay. That does not make any sense unless the markups are huge, which is likely. She told me not to refill it but it felt better to build a slight surplus in case something happens to my COBRA account unexpectedly.
Unfortunately, I was unable to refill my Norco or Oxycodone prescriptions. Those are one-time fill only.
Since I see my nephrologist so much, she has sort of become my primary care doctor. She will prescribe medication and appointments even outside of her specialty, which is taking care of my kidneys. Anyway, with the recent cast anxiety issues, my surgeon said to as my primary care doctor for anti-anxiety medication. No problem.
I just called the family practice clinic, and they cannot locate the last doctor I saw there. I have been going to that office for many years but back in 2018 or 2019, my doctor retired. I was then assigned to another family medicine doctor, Dr. Hoa Phan, and I did see her once in November 2020. Since it was during COVID, it was a video call. I even have proof from the Providence MyChart app:
Several months ago, the company that provided my wheelchair after surgery wanted to get authorization from my doctor. I gave them the name above, but they could not reach her. I finally sent them to my surgeon and promptly forgot about it. When I called today to make an appointment, the office staff could not find her name either. I understand she could have quit, but how do historical medical records disappear? Also, why can I see something from an app or web portal and the office cannot? Very weird.
Anyway, I managed to make an appointment in two weeks with another family medicine doctor, the same one that my parents see. My mom really likes him. I just want medication to help me stop freaking out about my cast.
Cast claustrophobia, also known as cast anxiety (CA), is a real condition that can cause extreme distress and anxiety while wearing a cast. It can be characterized by feelings of constriction and immobilization, and can even impede the healing process. Some patients may also experience pain, panic attacks, or thoughts of removing the cast.
Google Search AI
That is me, with the daily panic attacks. It started right after I received the new cast, and it has gotten worse every day. I felt terrible all day yesterday. Multiple times I felt I could not breathe and felt nauseous. The current panic attack started about eight hours ago and has prevented me from sleeping. There is no way I can make it through weeks of this. I tried some breathing exercises with no avail,a nd I really do not want to go to therapy or take anti-anxiety medications due to the cast.
There has to be a better way.
==========
Okay, super weird. After posting the above, I tried to take a nap. I was unsuccessful all morning, but I guess I was super tired. I managed to fall asleep for less than 20 minutes and when I woke up, all the hot/fold sensations were gone, and I could breathe normally. I did take a Norco 5/325 pill beforehand since I felt a neuropathy attack coming on the little toe on my right foot. Was it because I fell asleep? However, I woke up at 3:00 pm with my back burning. Did Norco block some kind of neurotransmitter? Was it hydrocodone or can just Tylenol work? I guess I will just have to wait to see if the symptoms come back. My right foot still feels like crap inside the cast though. That did not change.
I gave a tour of our factory last night. Employees are allowed to give tours of our factory for friends and family. Since I am quitting on Friday, I got a request for a tour from a friend and her family. I purposely pushed the date out since my ankle is still not 100%.
The tour itself went well. I arrived at work a bit earlier than the 7:00 pm time to drop off some candy and pick up a box of my office stuff accumulated of the past thirteen years. The actual tour took about an hour since there were quite a few questions. About midway through the tour, I knew my ankle was going to hurt. Afterwards, I went to dinner with my friend, then drove her home. I arrived at home around 10:00 pm and just crashed. My ankle was very sore plus there were multiple neuropathy attacks. I finally took one pill from my dwindling supply of Norco, and I feel a lot better.
My friend works at a pharmacy, and she gave me some sample pills of gabapentin. I have discussed this medication with my endocrinologist but decided to put it off. After the ankle injury, I feel the neuropathy attacks have been more intense so maybe it is time to revisit my decision.
==========
While at work, I visited a co-worker friend in the Shareholder Services team to make sure that I received my stock vesting. We vest on May 15th and November 15th. The only reason I worked hard to push my retirement date to May 17th is to get my final block of shares. It is not an insignificant amount so I am glad I was able to get it before I quit.
This is the lates x-ray image from April 22nd. My primary surgeon said it looked fine. Initially he wanted me to keep wearing the walking boot after I told him my physical therapist said not to wear it. However, he changed his mind and gave me an ankle wrap. It is a lot less bulky, and I feel it does help support my bad ankle a lot.
After four weeks of physical therapy, I can definitely feel more flexibility in my ankle, but overall movement will be very limited since the entire joint is fused. I can walk further than before, but there is still soreness in the ankle and calf muscle, and some pain and numbness in the heel. I am still wearing a travel compression sock on my right foot and using a special pillow to raise my lower leg when sleeping. I have four more weeks of physical therapy left. I hope I can walk longer distances without pain and without crutches.
==========
I do think the surgery has aggravated my peripheral neuropathy. I am experiencing much more pain when I lie down, especially if I sleep on my side. I have finished all the Norco prescribed during the ankle surgery, and I find that the oxycodone does not have any effect, even though it is supposed to be a more potent painkiller. Luckily, I found a vial of Norco prescribed to my mom back in 2020. It has long since expired, but they are still able to dull the neuropathy pain. Since I do not have a current prescription, I am using it sparingly on the most intense nerve pain attacks. I should ask my endocrinologist for a refill since she offered to prescribe me gabapentin previously.
This is such bullshit. My endocrinologist recommended the InPen to me and I got one last year. The pen connects via Bluetooth to your phone, and there is an app that calculates how much insulin you need depending on your glucose reading. Medtronic’s website claims that the InPen is a “smart” insulin pen, but the intelligence is in the app. The app tracks injections and calculates dosages; all the pen does is communicate how much is actually injected. Since you can manually enter shots, there is really no need for the pen itself.
What is the scam? The pen’s battery only lasts one year, and the battery is non-rechargeable and cannot be replaced. WTF? It is a nice pen, made of what looks like anodized aluminum. The condition of my pen is pristine so why do I need to throw it away? I checked online and the retail price is $400-$500. Since I have insurance, I paid a small copay. I may get another one while I have insurance, but I can always use my old manual insulin pens and just log doses manually.
I had the worst neuropathy pain I ever felt during the last hour. My physical therapist told me to not use the walking boot anymore, and just wear regular shoes on my right foot. After the session, my ankle was pretty swollen, but it felt okay. However, when I tried to go to sleep earlier, about four to five attack pointes appeared on each foot. For almost an hour, I was in constant neuropathy pain; it was about level seven or eight on the pain scale. I was about to get out the oxycodone I received for surgery pain.
Since then, the pain has subsided. Both my feet are still sore and numb, and there are still attacks but more spread out. I also skipped dinner so I will probably eat a snack, and reconsider if I need to take the narcotic painkiller still.
Last week, I wrote about having a reaction to my Humalog injections. It turned out that the NP at my endocrinologist’s office prescribed me an alternative fast-acting insulin pen. However, she did not send a reply, so I only found out when my local pharmacy called me to pick it up.
The new medication uses the same pen and has the same active ingredient, but their website says it has additional ingredients when compared to Humalog. Lyumjev is supposed to work faster so I should inject when I start eating, instead of fifteen minutes beforehand. It feels like the medication is more “effective” since I am getting much more low blood sugar events than with Humalog. Unfortunately, I still have a lot of Humalog pens and cartridges so if I keep using Lyumjev, all the Humalog in my refrigerator will need to be tossed.
I am also getting a lot of low blood pressure events, like right now as I type. Is this related to using Lyumjev instead of Humalog?
==========
Ha! I totally forgot to discuss the reason I was prescribed Lyumjev. I am still getting the hot flashes or flushing, but it definitely feels less severe. There is also a big difference in temperature between the two floors of my house, so I need to test my “allergic” response more.
For about the past six to seven months, I have been experiencing what feels like hot flashes. The affected area has been mainly the back of my neck and down to my upper back. My skin feels hot, but sometimes I also get chills or start sweating. I do not know if there are any physical issues, but it feels really uncomfortable.
Usually when this happens, I try and take some vital measurements to see if my blood pressure or blood sugar is either too low or too high. However, I have not found any correlation to either of those two factors. On the Mayo Clinic site linked above, they said the primary cause of hot flashes is menopause. Obviously, that is not the cause for me so it is likely a side effect of the many drugs I take.
Just now, I woke up to use the bathroom. I measured my blood sugar and it was a bit high at 190, likely from eating too much rice for dinner. I was feeling fine, i.e., no burning skin sensation. My insulin app said to inject four units of Humalog, and after a few minutes, the burning sensation appeared on my back. I shoot Humalog several times daily. Is that the cause?
Even now, after twenty minutes and only four units, my back is still burning, and I feel a bit out of breath. I looked online and found some conflicting information. Some sites said Humalog can cause chills and sweating, but the official website listed sweating as a secondary side effect of hypoglycemia. Here is what is listed as common side effects:
And here are severe allergic reactions:
I have been taking Humalog since my kidney transplant three years ago, and I do not believe I have had any allergic reactions to it. I typically shoot both Toujeo and Humalog before breakfast so I will try injecting a small amount first to see if I get a reaction before injection an entire dose.
I am in the middle of another neuropathy attack this morning. The pain started at about 2:00 am in my left heel, and it is bad enough to keep me awake until now. I am glad the pain is not in my right foot even though I cannot do much about the pain. I think I will try to sleep a bit more. A friend is picking me up for lunch, so I still have time for a three-hour nap.
I have about five Norco pills left. I am debating whether the pain is bad enough to use one of the pills so I can sleep.
I cannot sleep. The general numbness in my right foot is unbearable. I do not know if it is the cast, since my left foot is numb too. I still feel terrible overall, but not as bad as yesterday. My blood pressure seems in control since I did not have any aged cheese today, even though I do not really know if tyramine is the actual cause.
I did go home to my house today for about six hours and it was not as smooth as I imagined. The primary issue was that I fell off the knee scooter in my bathroom. The scooter is large and hard to maneuver in small spaces. In addition to banging my knee, I do not remember if I put any weight on my right leg, and if that is the cause of my discomfort now. It is also 72°F in the house but it feels hotter.
I am going to take on of the Norco pills to see if that numbs the numbness or makes me drowsy so I can sleep.
==========
Well, I did take a Norco and fell asleep. Right now, it is 2:30 AM so I slept for a few hours before getting up to go to the bathroom. Unfortunately, my blood sugar was low as I was chasing a high with extra insulin after dinner.
My sister does not have that many sugary snacks in her pantry.
I have not been feeling well since last night. It was not something specific like a fever or headache, but a general sense of not being well. Obviously, my ankle/foot is busted, but I just felt sluggish and unsettled. Sometimes it feels like I am on the verge of having a panic attack. There is definitely a mental issue that I am and still need to deal with. but this feels like something physical.
Since I only have a few diagnostic tools, I just checked my blood sugar (normal) and my blood pressure. I am using a wrist meter, and the reading came back as 220/120. Needless to say, that is a crazy high number. However, like my creatinine number, it has been fairly stable for weeks. When I went for the creatinine retest, I measured a 116/70 at Quest. This is normal for everyone and a bit low for me.
I read up online on reasons for sudden blood pressure rise and near the top of the list was tyramine. This is an amino acid that regulates blood pressure but is found in aged cheeses like parmesan. There were other reasons, but nothing was really relevant. I did see my SIL put in a lot of grated parmesan in the dinner dish last night, and I ate a Caesar’s salad today with what seemed like a large quantity of parmesan as well. I took an extra Metoprolol pill and will stay away from cheese for dinner to see if my blood pressure drops.
I woke up this morning to a lot of nerve pain in both feet. Since it was not limited to my right foot, it was probably my old friend “peripheral neuropathy” calling. i went back to sleep and woke at noon with about the same amount of pain.
In the past, I would take Tylenol or Tylenol PM and try to sleep it off. Because I was not 100% sure if the pain was surgery related, I took one of the prescribed painkillers: hydrocodone-acetaminophen 5-325 mg, aka Norco. The good stuff is 5 mg of hydrocodone. I swear, the pain went away in less than 10 minutes. It was like someone turned off the lights. No pain.
I know these things are addictive if overused. I created a new note on my iPhone to track what time I took the medication. The pain has not returned but it has been only six hours. I am supposed to wait at least eight hours and no more than three days. Right now, I do not think I will need another one today. I was also prescribed oxycodone, which I hear is even more potent. Crazy shit.
This is ridiculous. I measured my blood sugar at 196 mg/dL before dinner, and the inpen app suggested I shoot eleven units of Humalog. I ended up injecting twelve units, then ate my salad. This the reading just now:
What was in the salad?
one head of heart of romaine lettuce
1/3 cucumber
1 Roma tomato
1/3 can of garbanzo beans
cooked chicken breast
7-8 crutons
handful of unsalted roasted peanuts
Kewpie sesame dressing
Not sure how that can spike my blood sugar by 125 mg/dL and it is still rising. I guess I was right for not getting some chicken fingers at Raising Canes on my way back with salad ingredients from Trader Joe’s.
The reading is now 323 mg/dL. I am going to shoot more Humalog.
Life with chronic diseases 