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.
==========
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.
Weird. I woke up about 30 minutes ago and couldn’t figure out if it was 1:30 am or 1:30 pm, and what day it was. My first thought was that it was Wednesday at 1:30 pm and I had missed a bunch of work meetings. I was about to text out some apologies when I thought maybe it was Tuesday afternoon. However, I did have a work meeting earlier that was at 1:00 pm Tuesday so that got me more confused. I looked at the calendar app and the icon said Wednesday the 6th, which got me more confused since I remember going to dialysis “this” morning.
Sigh… it was not until I realized that it was 1:30 am Wednesday morning did everything fall into place. All my Wednesday meetings have not occurred yet. This is a problem when you sleep when you don’t have a good sleep schedule and nap whenever you can so you’re not totally fatigued all the time. That disorienting feeling was scary though. I also realized that I’m dreaming more often, even on short naps. When you dream, it feels like you have been asleep longer but I don’t think there is a correlation. I was having a weird dream, now forgotten, which made it harder to remember that I just went to bed at around midnight.
==========
So I got zero sleep this morning after posting the above. I pretty much stayed up reading Reddit until 7:00 am. I know I’m going to be tired later today so I need to find time between all my work meetings for short naps. I was going to go out to get my favorite breakfast burrito but I guess I’m scared of the out-of-control pandemic surge. I’m sure the virus can’t survive a hot griddle but the chance of getting infected is not zero, and now would be a bad time to get sick. So no breakfast burrito… I just got a cup of decaf and made a PB&J sandwich for breakfast.
It’s 3:38 am and I didn’t sleep at all last night/this morning. I also did not talk a nap all day yesterday since I was busy will work calls. I’m not quite sure what the problem is this time. Breathing was a bit more difficult lying down so my fluid balance is off again? Whatever the cause, I’m really tired from not sleeping well for the past two days.
I read somewhere that peripheral neuropathy was affected by fluids, and dehydration will cause the numbness to get worse. Maybe my new lower dry weight has something to do with increased numbness. Last night, I actually tried to go to sleep at around 9:00 pm since my right foot was experiencing neuropathy pain attacks. I even took some Tylenol PM to try and get some sleep but the constant numbness kept me awake until now. Fortunately, the pain attacks went away so I don’t have to deal with that during dialysis.
Since I have to get up in 45 minutes anyway, it’s pointless to try and fall asleep so I guess I’ll just stay up and prepare for dialysis.
It’s just past midnight on Saturday and I can’t sleep. The main issue is the peripheral neuropathy again. No pain this time but the numbness is overwhelming. It’s been slowly getting worse over the past several months, but since I was preoccupied with my heart issues, I haven’t blogged about it that much. The numbness is pretty constant and goes about a quarter way up my calf. Since I still have some edema, it does feel a bit bloated, like the skin is being stretched. It’s probably just false feeling; if I can’t feel pain, I’m not going to be able to feel anything subtle.
My back is also a bit sure. I’ve staring at my iPad too long while sitting on my bed. Add the constant chest pain/pressure when I lie down, it’s hard to relax and fall asleep. The problem is that I have dialysis in about 5 hours so I need to get some rest. I’ve been kinda falling asleep on the dialysis chair and that’s definitely not good for my back.
I read online on some websites that dehydration can make neuropathy worse. I think the dialysis center is drying me out but the edema in my ankles say otherwise. I asked my new endocrinologist about medication for neuropathy and she mentioned gabapentin and Lyrica. She said both are not good drugs for someone with kidney issues. So unless the pain is unbearable, she doesn’t like prescribing those type of drugs.
Sigh… for some reason, I always had the thought that modern medicine can fix everything. Then I find out there are lots of chronic conditions that have no cure, and patients basically suffer their entire life with these conditions.
==========
Update: 8/1/2020
So it”s about 4:00 am and I didn’t get any sleep this morning. Okay, maybe 30 minutes here and there. At 3:30 am, my big to on my left foot started hurting. As I mentioned before, the neuropathy pain episodes are coming fast and furious. Usually I get a few weeks of respite between attacks but now it’s days. I still think it may be dehydration from dialysis lowering my dry weight, but it could be just coincidence. What has helped relieve the pain sometimes is walking or just kicking out my leg violently. I think that moves the blood down my leg to get a bit more circulation. I found this on Amazon:
Cloud Massage Shiatsu Foot Massager Machine
The way it’s designed allows for both foot and calf massage. I also found that sometimes massaging the calves will cause nerve response in my feet. It has a 4 1/2 star rating with over 1,000 reviews. However, it does cost $250, though if it gives me some relief, it will be totally worth it. I’d pay $100k for a machine that stops the neuropathy numbness and pain.
At this point, I may as well stay up and prepare for dialysis. Not going to get any sleep in the next 30 minutes. I guess it’s napping in the dialysis chair again. At least it’s Saturday and there won’t be any doctors or staff calling on us patients.
==========
Initially, Amazon showed Prime delivery for tomorrow if I ordered with the next 15 hours with one-day shipping. I decided to wait until after dialysis to make the decision since it was $250. When I just checked again, the delivery date has moved to Friday, August 7th, and there was no explanation given. It still had the Prime tag so delivery should have been Tuesday at the latest. I was going to order anyway but decided to search online for other stores. One of the search results was Vybe Percussion which sold percussive hand massagers. They also carried the same foot massager with free shipping, also delivering on August 7th. However, they also had a coupon code for 20% and the code worked. So instead of $250, I ordered the massager for $200 (plus tax). I guess you should always do a quick search before buying anything at Amazon (or Costco) since sometimes there are better deals to be found.
Hopefully it works, even slightly, since $200 is still a lot to waste if it’s ineffective.
Last two months have been terrible for sleeping. Not sure if it was the a-fib or new medication but I was hardly getting any sleep at night while taking a lot of daytime naps. This morning, I finally got some sleep that was recordable by Fitbit. It was also the longest I’ve slept in weeks.
Fitbit gave this a sleep score of 64 (Fair)
If you add up all the sleep times, this was about 5 hours and 16 minutes of sleep. Here is a longer trend:
It definitely seems to be increasing over time. However, I had a-fib during most of May and the heart beat was too fast or shallow for Fitbit to pick up. I think I slept more than three hours/day if you add up all the naps.
Yawn. I just slept about four hour, which is the longest I’ve slept in several weeks. Maybe it was the dialysis clearance shortfall causing all my immediate health problems these past two weeks.
After dialysis, I stopped by to get lunch from a Hawaiian take out place right across the street from the dialysis clinic. I ate some of the food for lunch and quickly jumped into bed since I haven’t really slept for the past 48 hours. I think I was out in under two minutes. I did tell my mom not to wake me when I nap during the day (unless I asked her to prior to napping) since it may be the only sleep I’m getting all day. During the past few days, as soon as I fall asleep napping, she would wake me for lunch/dinner or something else.
==========
After dinner, I went to sleep again since I was so tired. I managed to sleep from 12:30 am to about 4:30 am. Doesn’t sound great but much better than zero. Combined with the long nap from yesterday afternoon, I almost feel normal. I was going to go into work today since it’s easier to work on my desktop. I have a 30″ monitor and two 24″ monitors, which are really helpful for coding and debugging. Instead, I managed to connect another monitor to my work laptop at home so I have a 24″ monitor, a 21″ monitor, and the 15″ laptop display for working at home.
==========
I sneaked an another nap from about 12:30 pm to 2:30 pm but the Fitbit tracker did not pick it up. I feel well rested for the first time in a long time. Even though the dialysis clinic extended my session to four hours when using the fistula needle, if we still run at 250 ml/min, the extra time won’t be enough for adequate clearance so I may start feeling bad again. Not sure what the solution is if we want to develop the fistula.
Not sure if it was the Codeine but I finally got some sleep this morning. The nerve pain also went away early as well. It was only ~4 hours of sleep but that’s the most I’ve had in weeks.
If you believe Fitbit’s data, it’s still,pretty pathetic. Only 10 minutes of REM sleep is not enough. I think I could have slept more but I was woken up early by the dialysis clinic. They wanted me to go in an hour early at 8:00 am. It’s about 9:30 am now and I have about 2.5 hours left.
It was pretty cold last night yet I still woke up in a sweat several times. I’m not sure what to do about it. I can try using the space heater to warm my room then not use such a thick comforter.
So I did not get any sleep at all last night/this morning. I think it was mostly due to my increased coughing, which irritated my heart surgery incision. I also noticed that when I’m lying down, it’s a bit harder to breath without coughing. I still don’t have a fever though so this may be just a cold.
No fever and no itchy eyes points to the common cold. I did get a flu shot earlier this year from my PD nurse. I have a lot of phlegm when I cough but it’s similar to what I had right after surgery. Since almost everyone infected with COVID-19 is feverish, I think I’m okay.
Sucks not being able to sleep though.
==========
After my walk, I was more tired. Even thought I’m supposed to be working from home, I had to take a nap. According to Fitbit, I managed to get about an hour and a half of sleep. It’s not great but better than nothing. Fortunately, nothing urgent happened at work while I was napping.
OMG, I’m so tired. This is my sleep history so far for March:
Sometimes the Fitbit tracker is unable to detect when I sleep
The Fitbit tracker skipped some sleep periods but it got most of them. The app said my average this month is a bit under 3.5 hours. Let’s round that up to four hours. This is including driving to work three days a week. No wonder I’m falling asleep each afternoon at work. I’ve been working from home this past week so it’s helping a bit.
I picked up an itchy throat and a slight cough. I think I’ve had that to a certain degree since the surgery. I don’t have a fever and my lungs sound normal per the dialysis nurses. Although I don’t think I have The Virus, the cough and the pressure it puts on my still healing chest makes it very hard to sleep. The night sweat thing is more common too, so even if I do fall asleep, I almost always wake up within the hour covered in sweat.
After the heart surgery, I thought if I endured 12 weeks of recovery, things would return to mostly “normal” as in pre-surgery. This has not been true at all. From the increased peripheral neuropathy to continued chest pain to persistent insomnia, my quality of life is definitely worse. Maybe that’s to be expected since people who had the same surgery told me they were having related health issues years afterwards.
Well, back to lying in bed for another six hours before “getting up” for work at home.
I think the diphenhydramine in Tylenol PM does have something to do with the increased neuropathy in my feet and legs yesterday. I only slept from 6:00 am to 7:30 am this morning so I’m super tired from basically four days of no sleep. I did go to work while skipping rehab but decided to come home early after a few meetings. I got home around 2:00 pm and slept until 6:00 pm, then again after dinner from 8:30 pm until now-ish. I still need to sleep more but at least I was able to get a few naps in.
The numbness feels like it’s subsided a bit. My feet are still numb but it’s no so unbearable like it was yesterday. I read that the half-life of diphenhydramine is about 6-12 hours so all of it should be gone within 1-2 days. Good thing it’s metabolized by the liver instead of the kidney. Otherwise I’ll never get rid of it. The breathing sounds and cough is better too so maybe that is a result of the extra medication. Problem is that I still need to find a sleep aid if I can’t use Tylenol PM.
I did not take organic chemistry in college so no idea what this means
Also, even though it feels like the numbness is better, I still don’t feel great. The vascular surgeon wants me to ask the dialysis team to start using the fistula tomorrow. I think you have to sit very still in case the needle comes out, whereas the tubing is locked to the catheter. I don’t know if I’m ready for it with the current neuropathy levels and the need to move around in my chair.
It’s now 3:32 am and I’ve been trying to sleep since midnight. In my previous post, I said I will not take any Tylenol PM in case I was reacting to the diphenhydramine. I do think my coughing and breathing is better than last night. I was hearing a bubbling noise when I exhaled before but not tonight. However, the existing insomnia problem is still there. I expect to toss and turn for another three hours until 6:30 am. Then I have to decide whether to go to rehab and to work.
If it was only that easy…
The last sleep I had was yesterday afternoon from 2:00 pm to 5:30 pm. My mom keeps waking me up telling me to stop napping, otherwise I won’t be able to sleep at night. The issue is that I already can’t sleep at night so I need all the extra naps.
I don’t know how it’s possible but the numbness in my feet/legs keep getting worse. I’ve been walking in the upstairs hallway for about 30 minutes and the numbness is affecting more and more of my legs. I tried using a massage wand to massage the calf muscles and a shiatsu foot massage machine for the soles of my feet, but nothing is helping.
Today has been a terrible day. From the almost panic attack and hot flashes during dialysis, to missing several appointments due to insurance mix-up (cardiac rehab, therapist, acupuncturist), to the overwhelming numbness in my feet, this is probably one of the worst days since heart surgery. I’m trying to stay positive but right now, there’s really nothing to look forward to. I alternate between work and dialysis for six days of the week, and then lots of sleeping in on Sunday.
==========
So the only difference between yesterday and today is the Tylenol PM I took last night as a sleep aid. The active ingredient for the “PM” part is diphenhydramine, which is the same ingredient for Benadryl. Each caplet contains 500 mg of acetaminophen and 25 mg of diphenhydramine. I took two caplets per the instructions on the bottle. Looking at WebMD, there are many side effects to diphenhydramine. Under common side effects, it lists an increase in the thickness of lung secretions. I think I had that last night, causing me to cough a lot more. Under rare side effects, it has chest discomfort, difficulty sleeping, excessive sweating, and numbness and tingling. I know it says “rare” side effects, but those symptoms showed up or intensified suddenly last night/today. Since it didn’t help me sleep last night, I’m going to skip taking Tylenol PM to see if my breathing and numbness gets better.
After not sleeping all last night, and only getting a short nap at work, I thought it would be easier to sleep tonight. Well, it’s 2:50 am and I haven’t slept at all. This includes taking two Tylenol PM tablets before trying to sleep.
Another problem that appeared when I lie down is a weird bubbling noise from my throat. I don’t think it’s from lower in the lungs. When I exhale, it sounds and feels like little bubbles bursting. When I Google, I can’t tell whether it’s respiratory or gastrointestinal related. If it’s respiratory related, then nurses should hear something when they listen with their stethoscope but no one has said anything yet.
==========
I think I finally fell asleep around 5:00 am but woke up at 6:30 am totally drenched in sweat. After changing clothes, I slept from ~6:30 am to 7:45 am when my alarm woke me up to go to dialysis. I’m really tired still so maybe I will sleep during dialysis for the first time. The Tylenol PM didn’t seem to help much.
Since I got no sleep this morning at all, I am super tired right now. I’ve already fallen asleep at my work desk for 20 minutes. Luckily I’m in the corner cubicle; if I sit low, no one can see me and unless they are looking for me specifically, there’s no reason to walk back here.
Not me… but very close
It’s about 5:40 pm. I think I’m too tired to do any more work so I’m going to go home. I’ll try to get a cup of coffee on the way out so I can have something to keep me awake on the drive home since it will be >1 hour to drive home. When will companies tell workers to telecommute in Los Angeles? Either I will get to work from home or there will be a lot less traffic.
Less red but still a lot of traffic and one hour+ to drive home from work
Another sleepless night so far. It’s almost 2:00 am and I can’t fall asleep… again. It think it’s the fourth sleepless night in a row now. I was able to skip work on Monday but I went to both rehab and work yesterday (Wednesday). I was very tired at work and luckily did not fall asleep driving home. Again, it’s a combination of chest pains and numbness/tingling in my feet. There is some edema in my ankles even though I didn’t gain that much weight since Tuesday’s dialysis session.
I tried taking a Tylenol + Codeine pill last night to see if that would make me drowsy but I still could not sleep. It did dull the chest pain which allowed me to lie down on my left side but no sleep.
==========
I was able to fall asleep from 4:00 am to 7:39 am according to Fitbit.
Ugh, I’m so tired. I basically got zero sleep last night again. I went to bed at 11:00 pm and Fitbit did not log any sleep at all. Unlike Monday, I can’t ditch my dialysis session this morning so I got up at 7:30 am. Right now I’m called into a work meeting and again, it’s hard to focus and not fall asleep. My work phone is also dropping the call so I’m juggling the call between two cell phones.
I’m not sure what to do. I don’t want more medications but may need a prescription sleep aid. It seems to be a combination of chest pain, neuropathy, and temperature control keeping me up. Even when I do fall asleep, I wake up sweating after a few hours even though it’s very cold in the room. If I try to use a lighter comforter, then it’s too cold to fall asleep.
I didn’t sleep at all last night. I went to bed around 11:00 pm and remained awake in bed until my alarm went off at 6:30 am. At that time, I decided to stay in bed and skip both Cardiac Rehab and work. I then ended up falling asleep until about 11:00 am. Still really tired but at least got a few hours of sleep.
I had a slight cough overnight so each cough would cause some pain in my chest that kept me awake. Also when I slept even slightly to the left side, my chest would hurt when I breathed. It feels like this sleep pain has gotten worse in the past week or so. Maybe I need to start taking painkillers instead of Melatonin before sleeping.
I had another dream several nights ago that included my ex-wife. We were walking to an ex-coworker’s apartment somewhere in Irvine. I can’t remember if we were holding hands but the walk was only several blocks. While in the dream, everything felt natural and real. When I woke up, it took a few moments to remember that we divorced a long time ago. You would think feelings would go away after 13 years but it was still pretty raw and painful.
Not us… random couple
Each time I come to dialysis I see some patients that come in with their spouse. Of course I don’t know their relationship but the fact they’re together says something. I don’t know if I was still married when I started dialysis, would my ex-wife stick around? Would she volunteer to donate a kidney? It saddens me that I don’t know the answer.
Part of the reason I’m in therapy are these dreams. I try really hard to forget my ex-wife but I can’t control my dreams. These episodes transport me to the past and I feel the loss and pain of her leaving again. Sometimes I end up crying for a long time after waking up. That’s probably not healthy.
While connecting me to the machine this morning, my dialysis nurse asked me if I thought about home hemodialysis and whether I had a care partner. You should have a care partner if you do home hemodialysis since a small error can cause you to bleed out and die. I live with my parents but that’s not the same as having a spousal partner. Sigh… I’m getting depressed again just typing this.
==========
張惠妹 – 連名帶姓
There is a famous Chinese pop singer named 張惠妹 or A-MEI and she has a song called 連名帶姓. It think it’s about not forgetting an ex. If you look on YouTube, the first comment under the official MV is a really long message from some guy talking about how he broke up with his ex six years ago but he still thinks about her and loves her. The song and the message is in Chinese. My Chinese is terrible but I could read >50% of the message and it’s pretty sad. A lot of A-MEI’s songs are sad too. It was kind of weird sitting in dialysis reading the message and crying, while hoping I understood enough Chinese characters to get the meaning right.
Someone read the long message out loud with A-MEI’s song as background music. This helped a bit since my listening Chinese is much better than my reading Chinese.
So I did skip cardiac rehab yesterday afternoon. I had a gap from 1:00 pm to 4:00 pm so I thought I would go to rehab and get one more session out of the way. However, I felt terrible during dialysis: tired but unable to sleep. I ended up going home and took a 90 minute nap before my therapist appointment.
Acupuncture appointment went really long today so I didn’t get back home until ~7:30 pm. I had a quick dinner then promptly fell asleep at 9:00 pm only to get up ~10:30 pm. I’ve been trying to fall asleep again since then; it’s ~1:30 am and so far I am unsuccessful. I have to leave the house early this morning for a work related commitment so I really need to get back to bed.
Chinese people believe in “sitting the month” or postpartum confinement. The thought is that after the trauma of pregnancy, if you get sick, then the effect of the illness will stay with you for the rest of your life. Post-heart surgery, I feel like a bunch of things about my body has changed too. Most noticeable is weight loss. I lost a lot of weight after surgery and more than three months later, I’m still down ~30 lbs. I know my peripheral neuropathy is a lot worse than before, and I never started peeing that much after the surgery. Finally, even though I feel cold most of the time, I’m sweating a lot at night when I sleep.
Before, I thought the space heater in my bedroom was turned too high so I put a wifi switch on the plug and have been turning it off before sleeping. It definitely feels cold in the room when I have to get up in the middle of the night. Before surgery, I would use a thin blanket plus an old comforter to sleep comfortably. Now, with just the comforter and the heater off, I wake up constantly covered in sweat. I’m not even wearing pajamas, just a thin t-shirt and underwear. If I don’t sleep under the comforter, than it’s way too cold. I’m at a loss at what to do. Turn up the heat and use a thinner blanket? Open the window a bit so the room gets even colder?
==========
Last night’s sleep was dismal. I was tired after dialysis and walking so I took some naps, from 3:45 pm to 5:00 pm and from 9:00 pm to 10:00 pm. Then I could not sleep until 5:45 am and woke up at 7:45 am all sweaty. I can’t remember what I did for almost eight hours but it was a lot of YouTube and Nintendo Switch. That’s only two hours of sleep for today so I’ll need to find some time for another nap. Not good.
Life with chronic diseases 