More Price Gouging?

Since I’m a bit short of breath lying down, I thought I could get a oxygen saturation sensor to see if there’s enough oxygen in my blood. I know they make portable ones since my primary doctor uses one when I go to her office. The first place I looked is Amazon and I checked price history on camelcamelcamel.com. This is another item that seems to have a thousand cheap Chinese copies but none of them are cheap anymore. Looking at price history of several items, they all seem to have doubled or tripled very recently. Several had their prices spike within the last day. How is that possible? Is it a bug/feature of the Amazon pricing model?

The price on this item (rated 4.5 with 121 ratings) was $14 until yesterday?! What’s up with that? I can tell these are all probably shipped from China by searching AliExpress which is like Amazon for 3rd party sellers in China. Here prices are still in the $15 range but will take a month to ship. Looking at the shipping dates on Amazon, it appears that items are shipping from China anyway so why not just order directly?

==========

I just purchased two sensors from AliExpress. This one has almost 14k orders and I chose the OLED + case version for $19.32. There are also coupons plus I paid with PayPal, which has fees and discounts too. It’s a bit confusing but the total came out to $36.11 for both. Delivery date is tentatively May 1st, which is comparable to some of the dates I see on Amazon. It’s my first order on AliExpress so let’s see how well this works.

*Medical Digital Pulse Oximeter LED Oximetro blood oxygen Heart Rate Monitor SpO2 Health Monitors Oximetro De Dedo*

Heh, I got an email from PayPal saying I spent $36.11, which is what I saw on the screen. However, on AliExpress, the order summary says order amount is $41.11 (not including $2 new user coupon and $3 PayPal discount?). If I ask them to generate an invoice, it says the total is $39.72. I wonder how much I paid for these oxygen sensors really.

Walking 3/28/2020

I went out for a quick walk, thinking it may help with the neuropathy pain. Nope. I started running out of breath just walking past a few houses. It’s the worst yet. I ended up walking once around our block and I can’t remember how I made it back home. It felt like imwas dreaming and falling asleep while walking. At the end of the very short walk, I was really breathing hard. I only walked 0.32 miles plus about 15 minutes of walking inside the house. Not good.

I took a Tylenol-Codeine pill when I got home. I also just soaked my feet in fairly hot water. Nothing had worked yet. I need to take a nap and have the pair wear off but my recent breathing problems while laying down is not helping.

Neuropathy Pain During Dialysis (updated)

Crap! The outside of my right foot just started hurting and it’s pretty intense. I don’t think I’ve ever had the nerve pain start up during dialysis. Right now it’s occuring about a minute apart and probably will start increasing in frequency and intensity soon. I hate it when it happens during dialysis since I can’t get up and walk around. Also I don’t have my Codeine pills here, only regular Tylenol so I took two pills. It probably won’t help and there is still 2:09 left on the machine.

I can’t believe it’s happening again so soon after the last occurance. It used to be about a month between attacks. If this is going to happen every few days, then I’m dead. I probably won’t have any choice but to get more medications for nerve pain.

Damnit, I hate this. The nerve pain and numbness won’t go away after transplant so there is really no hope for relief.

==========

It’s about 12:45 pm and there is 16 minutes left on the dialysis machine. The pain has mostly subsided for about 45 minutes, with very occasional attacks. I don’t know if it’s the Tylenol or if this is a new pattern: shorter duration bit more often episodes. My foot is still twitching so it’s not over yet.

==========

Nope. Wishful thinking. I just got home and the same spot is hurting again like the lull never happened.

==========

The pain is a lot worse than I remember pre-surgery. I guess I’m paying for the three month’s of peace I had. I’m not sure I can function if the pain comes back every few days. There is no way I can concentrate enough to work and definitely no way I can sleep.

==========

It’s almost midnight now. My foot was hurting all day until I managed to nap a few hours. However, as soon as I woke up, the pain returned. This is also kinda new. Previously, I would never be able to sleep while the pain attacks were happening. Once I did fall asleep, typically the pain would stop when I woke up. I took two Codeine pills in the afternoon and two regular Tylenol pills after dinner so I’m maxed out on acetaminophen for today. Fortunately, the pain intensity seems to be slightly less so many this episode is winding down.

If felt weird walking around the upstairs hallway at home. I was so tired from the lack of sleep so I felt like I was going to fall asleep while walking the 20 feet over and over again. As soon as I get in bed, the pain would keep me awake. I think taking two Codeine pills finally knocked me out but the drug effects wore off too soon.

Walking 3/27/2020

The weather was really nice today so I went out for a quick walk. I walked 1.0 miles at a pace of 23’08”. Again, I didn’t feel like I was walking that fast, and I’m still running out of breath along the way. There were a few people on the park path walking but the park itself was full of people again. There were people on the basketball court and hanging out in groups. I don’t even know the latest quarantine directives for the City of Orange but I thought only walking by yourself was okay, and all the parks amenities were closed. I stayed away from everyone and just walked my mile and went home.

Sleep Update 3/26/2020

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.

Neuropathy Pain 3/25/2020 (updated)

Arg! After almost three months free from nerve pain, my neuropathy is happening again! Since I got so little sleep yesterday, I went to bed at 9:30 pm tonight. After sleeping for ~1.5 hours, I was woken up by a sudden pain in my left heel. It’s just starting so the attacks will increase in frequency and intensity. There has been no remedy in the past other than taking Tylenol and trying to sleep it off. Typically the attacks lasts 24 (or more) hours and is bad enough to make me cry out in pain each time. Unfortunately, if it runs it’s normal course, I will be sitting through the worst of it during my next dialysis session. In the past, these pain episodes would be at least about a month apart. I just had one last a week ago so this is a change for the worse as well.

I just took one of my dwindling Tylenol + Codeine pills. Hopefully I can fall asleep and have the pain disappear early. If not, it will be a terrible dialysis session tomorrow.

==========

No luck. The pain is increasing in intensity each attack and causing me to breathe harder. Since I’m still short of breath from coughing and surgery chest pains, it’s making breathing even harder. I don’t think I will be able to sleep for the next 24 hours until this episode passes.

==========

It’s 1:45 am and the pain is a lot better. This is after using a massage wand for 20 minutes and the violently swinging my left leg to get the blood flowing. I think it’s been over 15 minutes since the last pain attack so maybe it has subsided early. Or it’s the Codeine working and I’ll be in pain in a few hours as it wears off.

Walking 3/25/2020

Holy crap! I’m totally out of breath from a short walk. It was like this on Monday too, though things were pretty normal last Wednesday. Now I’m worried about COVID-19 again since one of the symptoms is shortness of breath. Still no fever though.

I walked 1.05 miles at a pace of 23’59”. Since I was out of breath most of the time, I though I walked slow but 24 minute mile is kind of quick for post surgery me. I walked through the park path again and today, there was a lot more people. There were people shooting baskets, blatantly ignoring the sign that says the court is closed. On the baseball field, there were a lot of people playing. Each group was pretty well separated but still…

Here is the parking lot. It was full of cars.

Telemedicine, Primary Care

I had an appointment with my primary care physician today. They don’t have their video equipment set up so instead of a video conference, the appointment because a phone call. The only lab test was for Hemoglobin A1C and my result was 5.9%. It went up slightly from January when it was 5.0%. It think for diabetics, the number should be below 7.0%. My doctor said the number should be lower for patients on hemodialysis. She then asked about my daily blood sugar readings, which were below 100 in the morning. I think she was thinking about my brush with hypoglycemia awhile ago so we ended up removing the last of my blood sugar medicine.

I think it’s the first time I’ve been off diabetic medication since forever.

Uncertainty Anxiety

Throughout the recovery period after heart surgery, I was struggling with anxiety and even panic attacks. The worst case was when I had to get out of the house, even though it was 11:00 pm at night, raining, and I could not even walk that far. It was an overwhelming sense of impending doom.

Since then, there have been periods of high and low. I think as each new issue arises, I have to do research to find out more info, and knowing more relieves my anxiety. This happened when the UCLA transplant coordinator called me back and left a long message about status, and also when I finally started cardiac rehab, which was required by UCLA. I don’t do well when there are too many unknowns. I start thinking about all the worst cases and start having dreams/nightmares about it.

Right now, I have several unresolved items:

Medical insurance: Still have not received a call back from my work insurance. I sent them very clear written evidence that they have the wrong information but they’re still rejecting past claims. I’m pretty sure all the claims will be resolved but not looking forward to the amount of extra unnecessary phone calls required.
Worse health post surgery: It’s hard to compare without objective data but my peripheral neuropathy definitely feels a lot worse than before. I don’t think the numbness and tingling was bothering me 24 hours a day before surgery. Also the loss of remaining kidney function is stressing me out. I have to really watch my fluid intake.
Insomnia: It’s been a week of no sleep. Sometimes I finally fall asleep around 6:00 am but always need afternoon naps to make up sleep time. I know it’s bad for my recovery but nothing is helping.
Worsening chest pain: I thought I was getting better but lately, the chest pains from the surgery appears to be getting worse. From the growing keloid on the scar to pain and difficulty breathing when lying down, I seem to be losing ground on recovery.
Employment: Still haven’t caught up at work. I get email daily about issues that I do not know how to solve. I’m not sure if it’s okay yet. There is a lot of systems and coding skills required and I’m probably can do only 50% of the task. I have staff that can do everything but it’s a new experience managing stuff I don’t completely understand.

Finally, this COVID-19 pandemic has made things much worse. All non-essential medical services are now on hold so hospitals can deal with infected patients. This cardiac rehab program, and therefore my transplant, is on indefinite hold. Even after everything resumes, I have to weigh the risk of taking immunosupressive drugs during a global pandemic. I was hoping for a kidney transplant and an end to dialysis this summer but now I’m back to not knowing. Even now, I’m worried constantly about getting the virus and infecting my parents at home. Since they’re both 78 years old, there is a non-zero chance that if one of us gets COVID-19, it will kill all three of us.

Walking 3/23/2020

The latest rainstorm appears to have ended so I went outside for a walk. The city closed all the park amenities but still encouraged people to go out and exercise, as long as they stay six feet away from everyone. I’m not sure how far and how fast I walked since the Fitbit tracker crapped out and didn’t record anything about the walk. I did notice that I got tired and winded rather quickly, probably only after a quarter mile. Not sure if it’s because I’ve been in bed a lot, or if my cold (hopefully) symptoms reduced my lung capacity temporarily. It did get better a around the half-mile point though. After the walk, I had to sit in the garage for a few minutes to catch my breath. Never had to do that before. Not good.

*Weird. Maybe the 140 bps tired me out early*

There were very few people out. Most were out walking their dogs. The parking lot at the park had lots of cars but it looked like people stayed inside their cars instead of going into the park. I did see signs on the basketball court and jungle gym saying those items were closed. There was also very little traffic on the roads for a Monday. I walked by an elementary school and it was closed.

COVID-19 Symptoms? (updated)

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.

Sleep Update 3/23/2020

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.

Mahjong Cancelled

My sister asked us over to her house to play Mahjong in this time of social distancing. We originally got the time confused and showed up to her house last night, only to come back 15 minutes later. This morning, my parents reconsidered and decided to stay home. I think they were worried that my nieces could pick up the virus (they’re 13 and 10), not show any symptoms, then pass it to them and me. All of us are at high-risk due to age or medical conditions.

So for an tire week, I only left the house to go to dialysis plus the short visit to my sister’s house in error. This week looks about the same. Sad.

Telemedicine

I had a three month follow-up appointment with my cardiologist today. Due to the whole COVID-19 thing, they switched it to a remote appointment. I originally thought it was going to be a phone call but they set up a Zoom video meeting instead. I think it went well though it was hard to show the doctor my surgery scar. I have more appointments with different doctors next week and I know one of them has been switched to Zoom as well.

Walking 3/18/2020

I was going to continue cardiac rehab today but decided to call first to make sure they’re still open. I left a voice mail and the front desk person called me back to say they are still open, but only letting in six patients at a time, and you have to wear gloves. However, five minutes later she calls me again to say they’ve decided to close the facilities indefinitely. I knew this would happen sooner than later, which also puts an indefinite hold on my transplant.

The neuropathy pain also increased in intensity and frequency so that I’m almost in constant pain. In the past, sometimes going out and walking helps with pain, possibly by increasing circulation. I ended up going out twice for short walks. First walk was around 1:00 pm and I walked 1.07 miles at a pace of 23’14”. I just got back from second walk at 8:40 pm and I walked 0.71 miles at a pace of 23’20”. It was pretty dark and cold out, and absolutely no cars or other people. It was eerily quiet. I know this doesn’t count for UCLA toward cardiac rehab but I need to keep exercising. Since I’m not “gathering” with anyone, I think it’s okay for me to leave the house with minimal risk.

The pain pretty much goes away while walking. During the first walk, the pain only appeared twice, and only once during the second walk. Normally, the pain would come as frequently as 20-30 seconds apart so walking does help, but only while walking. Hopefully it will go away by tomorrow morning. I can’t imagine sitting in dialysis for four hours with both the numbness and pain. Ugh!

Peripheral Neuropathy & Nerve Pain

In addition to numbness and tingling in my feet, I used to get pretty several nerve pain about one a month. Each occurrence would last about 24 hours and painful enough to prevent me from sleeping or working. The apparent location of the pain point would vary each time as well.

Since the heart surgery, the numbness and tingling seems to be much more intense than before, but the pain part has been rare. I think it only happened once or twice and I’ve been relatively pain free for the past three months. However, it seems the pain is starting up again. There’s a sharp pain that appears intermittently in my left foot. I was hoping that the nerve pain was somewhat related to my heart issues. Once the blocked arteries were bypasses, maybe the pain will go away too.

I guess not.

==========

I also spoke to the rounding nephrologist yesterday regarding the neuropathy. I read some articles online that correlates neuropsthy with dehydration. The only major change I can come up with between now and a few months ago is my weight loss and a lot of that is fluid removal. I’m still pretty thirsty most of the time and they keep dropping my “dry” weight at dialysis. I thought if they let me drink more and increase my weight, it may relieve some of the neuropathy. However, the doctor said she hasn’t heard of this relationship before and suggested more medication (Gabapentin) for the neuropathy.

Orange County Health Officer’s Order

Here it is. Orange County basically ordered everything shut down until March 31. I was thinking of going to work tomorrow for one day to use my desktop. I have a deliverable Friday that I doubt me any my one staff person will finish and going in to work may speed it up a bit. However, I managed to get my VPN and remote access to work so maybe I can stay home. My work is also in a different (Los Angeles) county so I wonder if the no work rule applies.

Of course there are many exceptions for essential activities. The dialysis clinic is still open so that for sure falls under essential. I don’t know if the cardiac rehab center is still open and whether I should still go and finish up, or wait two weeks. With all these social distancing orders, I’m pretty sure they’ve halted non-emergency procedures also. I think all of US society just got delayed for two weeks.

Here is a useful infographic from UCLA Health:

*Ugh, I gotta stop biting my fingernails*

COVID-19 3/13/2020

Today has been an interesting day. Since I didn’t go to rehab all week, I decided I need to to go this morning even though I didn’t get any sleep. I arrived at the gym at 8:00 am and there were only two patients. I guess the rain and COVID-19 is keeping everyone at home. The nurses suggested we wear disposable gloves while we exercise and they also had masks available. It was pretty weird walking on the treadmill for 30 minutes wearing purple surgical gloves. Since my palms sweat, it was also pretty gross when I took the gloves off afterwards.

*Another item that’s hard to find in stores*

Since I thought I had a meeting at 10:00 am, I drove straight to work after rehab and didn’t check my work phone. I was going to talk to my boss about working from home more since this COVID-19 pandemic is becoming more serious. When I walked into our area (there are 5000+ at our work-site), about four coworkers told me to go home right away. Turns out an employee came down on Tuesday from our Seattle office and their partner was infected with COVID-19. Yikes! Since everyone knows my medical journey, they all told me to go home. Once of them actually texted me this morning but I didn’t see the message. I spoke to my boss and he also told me to go home. He is telling our entire department to work from home next week to see if that was an isolated case, or if our building turns into an infection hot spot. I had to quickly do a few things then left for home after 45 minutes. At the same time, our CEO sent out an email message telling sick people to stay home, but the overall tone of the message seems to downplay the seriousness of the pandemic. Not helpful.

Since I was at home, I watched President Trump’s press conference at the Rose Garden this afternoon. There were a few useful facts but most of it was useless and cringy. I swear he sounds retarded when he speaks. I was also disappointed in Mike Pence; he spent most of his time kissing Trump’s ass instead of demonstrating leadership. The Q&A was also interesting. The foreign reporters seem to ask balanced questions but some American journalists were definitely out to get Trump with their passive-aggressive questions. Even at this time, everything is about politics.

We’re all going to die.

COVID-19 Effect

Hmm. The response to COVID-19 in the US seemed to go from 0 to 100 this week. The stock market keeps dropping and now there is a travel ban on all of Europe. My parents have some friends whose children are stuck in Italy with no way home. My church have cancelled most gatherings and switched to live streaming online. My sister cancelled her family trip to Disney World; they were supposed to meet up with my cousin’s family driving down from Toronto. No more NBA games?!

Even worse, the dialysis nutritionist told me the hospital was running out of supplies. They only have two weeks of surgical masks left. She was told not to wear a mask to save on supplies and not to freak out the patients. I think her not wearing a mask is freaking me out more. Typically for each session, they pack a bag with all the necessary supplies to connect and disconnect patients. My bag always included a surgical mask due to the infection risk of using a chest catheter. Well, there wasn’t one today, not even a manual tie-on mask. My nurse had to grab a staff mask with a plastic shield for me to use. Pretty wasteful since I don’t need the shield but it speaks volumes about the supplies shortage.

*My stash of three boxes of surgical masks from peritoneal dialysis days*

I slept a bit after dialysis today but again, I think it will be another sleepless night. It’s 1:30 am already and I’ve been “in bed” since 9:30 pm. I think I need to go to rehab tomorrow. With all my insurance problems, I really should try to finish up before the end of March. I hope they don’t shut down the cardiac rehab gym, else I’ll never get my transplant scheduled.

Peripheral Neuropathy 3/11/2020

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.