Author: mybadkidney

Back From The ER

The patient that got carted out by paramedics Tuesday is back. I didn’t see him on Thurssay someither he came at a different time slot, or had dialysis done in the main hospital. Their room is smaller and much colder.

The patient’s wife is here today watching him. Maybe they made an exception to the no visitors rule since he was just in the ER. He’s sleeping right now but groaning loudly at the same time. Never heard him domthat before and it’s a bit disturbing.

Ugh, my right foot is killing me.

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.

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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.

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

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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.

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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.

DoorDash and CPK

Tired of eating the same food day after day, we decided to get some take-out for dinner yesterday. I called a local Italian restaurant but no one answered the phone. I then went online to DoorEash and ordered two pizzas from CPK (California Pizza Kitchen). I went there for lunch pretty often a very long time ago, but haven’t eaten there in years.

The website said delivery in about 55 minutes and since we’re in the middle of a pandemic, I okayed the suggested $7 tip. So the total was about $33 for pizza + tax + $3.50 for DoorDash + $7 tip = ~$46. I forgot how small the CPK pizza were somit wasn’t really worth it.

Thai Chicken Pizza

Also the driver was about 20 minutes late somthe pizzas were just slightly warm. Worst part, I put on the order to have the driver drop,off the food at the front door. However,maybe driver rangthe doorbell and waited for my dad to open the door, and handed the bag to him. That defeats the purpose of the delivery. I would have gone and picked itbupmif we needed to come in contact with strangers. Sigh.

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.

Simulating An Epidemic

YouTube video by 3Blue1Brown that simulates how various quarantine measures affect the infection curve.

He has several key takeaways but most importantly, we need to keep the measures in place until the virus is eradicated, otherwise we’ll just have a second wave of infections. I don’t like staying home but I’m more worried about getting sick at the dialysis clinic.

Here’s where I believe President Trump is an asshole. I didn’t vote for either him or Hillary during the 2016 elections. He’s so worried about his re-election that he is willing to tell lies about the pandemic in order to prop up stock prices. Basically trading lives for votes. More people are going to die if we go back to business as usual while the pandemic is ongoing. He should just shut the hell up and let Dr. Fauci talk.

MIA: Chaplain Intern

I haven’t seen thechaplain intern for two weeks now. I’m guessing he’s not considered essential staff think he could be useful during these stressful times but infection riskmis still in retty high.

I wonder what he’s doing now since churches are closed too. I guess everyone’s life is on hold. I’m still thinking about the question he asked me a few weeks ago about Lazarus. I wonder if we’ll ever meet again to discuss.

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.

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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.

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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.

Transplant Status 3/25/2020

As a courtesy, I email my transplant coordinator at UCLA to let her know that my cardiac rehab is on hold because St. Joseph Hospital closed all non-essential services. UCLA has indicated they want me to finish the program before taking me off hold. However, in the email reply, the coordinator said she received clinical notes from my 3/18 and will coordinate a visit with a UCLA cardiologist. Hmm… does that mean they are good with me completing only 14 out of 24 rehab sessions?

My primary doctor said this is not the time to get a transplant. She’s not worried about the actual surgery but more concerned with all the immunoupressive drugs post-surgery. I would be more susceptible to all sorts of bacterial and viral infections, including SARS-COV-2. Great timing!

Take Out Lunch

Near the end of my dialysis session yesterday, I got a marketing email from Panini Kabab Grill. I used to order food from them quite often so they have my contact info from the app I downloaded. I would usually get the two kabab family dinner for the three of us at home. It’s very convenient since there is one in Santa Ana Main Place, which is only five minutes from my dialysis clinic. Like almost all restaurants in California now, they only do take-out and delivery as their dining room is closed due to COVID-19.

Basically the email was advertising them rolling back prices on two menu items: Charbroiled Chicken Shish Kabab and 4-Skewer Family Kabab Combo. I’ve been eating poorly again these past two weeks as we are stuck at home. My taste profile has changed since heart surgery so some of the items I used to like from my mom’s cooking now taste bad and some things even cause nausea and vomiting.

Panini kababs also taste slightly different from what I remembered but it’s still tasty so I bought two kabob plates for $10 each. I managed to eat one entire plate for lunch and it was good not to be hungry again. There’s no nutritional information on their website but MyFitnessPal has some basic info:

  • Calories = 423 calories
  • Carbohydrates = 2 g
  • Fat = 2 g
  • Protein = 63 g

I’m actually worried about the sodium levels since you can’t really tell from the taste how salty food is.

Internet Speed (updated)

I read on Reddit that people have been experiencing slower Internet speeds now that everyone is stuck at home. For me though, it appears my Internet speed has gone way up. I used to average about 30 Mbps for the longest time. I even bought a new cable modem last year since according to Cox, I’m supposed to be getting ~100 Mbps for my $80/month. I’ve just been too lazy to call them. I just ran Speedtest, and got this result:

Fast!

It’s not just only this test. Running the Google speedtest gave me 162.2 Mbps download and Speakeasy speedtest shows 180.3 Mbps. I’m still paying the same monthly fee for the past several years so it must be something on the Internet provider’s side. I did notice a slow down several days ago. I think the Internet is slower in the evenings; I guess that’s when everyone is streaming video from Netflix or other services. I think I was only getting ~5 Mbps at that time.

When we moved into this house 10 years ago, I was hoping to get a fiber connection. At that time, the only fiber option was Verizon fios and they did not offer the service in my neighborhood. I then called Time Warner and they said they would have to dig up my front lawn. The only connection already in place was with Cox so I didn’t have a choice. I’ve been watching Google Fiber but they have not expanded here either. Cox is offering Gigablast for an additional $27/month which will increase my speed to 940 Mbps. I’ll need to check if my current cable modem and Wifi router can handle that. Despite what Trump says, looks like we’re going to be stuck at home for several more weeks or months.

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Just found out that I have Internet Preferred so I’m supposed to get 150 Mbps. I guess I’ve been shortchanged all this time. It also says it’s ideal for 7 devices. Ha ha! I have about 50 devices connected. Just counting TV and tablets, we have four Samsung smart TVs and five iPads. There is another service level called Internet Ultimate which gives you 300 Mbps. However, it’s the same price as Gigablast at 940 Mbps so I don’t know why it’s available. Probably Cox will raise the price of Gigablast later.

Paramedics at Dialysis Clinic

My dialysis clinic had to call for paramedics again today. Thankfully it was not for me this time. When they called paramedics for me back in December, it ended up with a four hour visit to the emergency room and a whole lot of nothing.

Anyway, there’s a Hispanic man in a wheelchair that had dialysis around the same time as me so I see him in the waiting room, and he’s in the same pod as me. Usually his wife brings him in, but occasionally it’s just a medical transport driver. I’ve never spoken to him in person. I’ve only heard him speak Spanish and he’s usually super grouchy. He’s also confined to the wheelchair so they need to lift him in and out of the dialysis chair.

I’m not sure what was wrong with him today. Usually he’s sleeping in his chair and never seemed to have any issues before. I hope he’s doing okay but the prognosis is not good for dialysis patients with other medical issues.

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.

Pharmacy Visit

With so many prescriptions for medication, I get text messages and automated calls from my pharmacy weekly. About half of my prescriptions are on auto-refill so I’m not always expecting the notifications. My sister just picked up a few prescriptions for me Friday and my pharmacy is asking me to pick up a few more today.

My pharmacy is at the back of the local Albertsons. The supermarket is quite large and I’m sure it’s pretty busy these days. I will need to walk through two-thirds of the market and talk to the pharmacist. Worse, I will need to sign electronically for the prescriptions and I’m now paranoid about touching anything outside the house. I should have switched to the mail-order prescription service earlier.

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.

Infographics from Hartford Healthcare

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.

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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.