2020

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.

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.

Just Make It Stop

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.

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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.

Manual Tie-On Surgical Mask

I just got connected to the machine at dialysis now. Since I’m still using the chest catheter, I usually have to wear a surgical mask while the nurse connects and disconnects me, in case I breathe on the connector and give myself an infection. The mask has always been blue or purple, with elastic earloops. Today, I got a manual tie-on mask; I’ve never seen one before. The nurse thought it was weird too. Maybe the hospital is running out of supplies?

It took me several tries to tie the mask behind my head. I’m not sure how doctors and nurses do it, maybe they have help. St. Joseph is a huge hospital. You would think they have a huge stash of medical supplies and personal protection equipment on hand. Or has the hoarding gotten so bad that hospitals are short on supplies? Now I’m wondering if I need to bring my own masks from home since I don’t want the manual tie-on one to fall off while I’m wearing it.

Sleep Update 3/10/2020

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.

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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.

Sleep Update 3/9/2020

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.

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*

Sick? (updated)

Ever since the surgery, I’ve had phlegm in my throat and a slight cough. This was especially bad during the first few weeks after surgery since each cough felt like the end-of-the-world. It’s much better now but coughing and sneezing still causes pain in my chest.

Over the past few days, I think I’ve been coughing a bit more than before. However, I don’t have a fever and my temperature readings are normal. With COVID-19 around, you’re not sure if you should panic each time you experience potential symptoms. It’s ridiculous that we don’t have access to quick tests to verify if we’ve have COVID-19, or just the regular flu/cold. Korea even has drive-through testing stations now and they can test 10,000 people/day.

I also feel like it’s hard to breath when I lie down and try to sleep but that’s been true for several weeks now. Again, I don’t know if I should be worried or not. Since my parents are both 78 years old, I don’t want any chance of infection in the house. I’ve also been told by my doctor to be very careful about getting the flu. Does dialysis compromise your immune system?

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Ugh. I guess that’s a yes on dialysis and compromised immune system.

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I ended up not sleeping at all last night/this morning. I was coughing too but it kind of went away this morning. Since I didn’t get any sleep, I just got up and went to work instead of cardiac rehab. I don’t know if lying down causes both the chest pain and the coughing but I don’t think I’ve caught COVID-19… yet.

Vomiting Again

After breakfast this morning, I felt a little bit nauseous but was able to suppress the urge to throw up. I was fine at cardiac rehab and work, and even ate an Italian sandwich from the cafeteria. After coming home and napping, I started sweating and had an upset stomach. I was worried that I may have gotten COVID-19 but no fever and I felt mostly okay. I ended up coughing a bit and that triggered the vomiting, much like the time right after heart surgery.

I’m not sure why this is happening suddenly. I don’t have any medication changes and didn’t eat much other than the sandwich. I didn’t throw up and solid food; it was mostly acid and some of the Strawberry Ensure I had earlier. There wasn’t very much to throw up so I guess I digested everything.

It’s about 12:30 pm now so I’m going to try and sleep again.

Coronavirus Non-Handshake

I went to Friday worship and prayer meeting at church after work today. On my way out, I saw someone I haven’t seen in a long time in the parking lot. I think we were going to shake hands but we both hesitated and ended up not shaking. It was kind of weird but I guess expected now.

I thought about not going to church since there are hundreds of people and who knows where they’ve been, and if they all wash their hands regularly. I’m not sure how to avoid COVID-19 if people can be infectious without any symptoms. We need a spray that makes the virus visible so we know who/what/where to avoid.

Hopelessness

I read a post on Reddit where the poster’s mother is stopping dialysis. Typically, you can live about two weeks without dialysis depending on your residual kidney function. I haven’t thought too much about how close to death I am but it’s something that’s always in the back of my mind.

Some of my coworkers and friends comment on how “strong” I am, having to deal with all these health issues. Really I’m not. Lately, I’m dreading each dialysis session. When I’m sitting in the dialysis chair, I keep looking at the time remaining display wishing that time would run faster. The only thing that’s keeping me going is the potential for a live donor kidney transplant in the near future. The strong ones are those patients that don’t qualify for a transplant yet go to dialysis day after day, month after month, year after year.

I thought the Kidney Disease Support Group at Saddleback Church would help. I imagined a small group setting where patients would share their experiences and encourage each other. Rather, it’s more like a Q&A session for people just diagnosed with kidney disease. Maybe I’ve picked up one or two pieces of information but it really hasn’t done anything to help my anxiety or despair about my condition. Now that my therapist put me on hold due to possible insurance issues, I don’t have anyone to talk to.

Sleep Update 3/5/2020

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.

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I was able to fall asleep from 4:00 am to 7:39 am according to Fitbit.

Cancelled Appointments

I’m not sure what to do about my work insurance screw up. My therapist basically suggested we stop meeting until the payment issue is resolved. I don’t think she has received any rejected claims back yet but we’re stopping anyway. There could be as many as four rejected claims for my therapist so that’s an extra $400 I would have to front and maybe get reimbursed later.

This is happening to claims from the acupuncturist as well. I’m still going tonight but will probably have to stop. There are a lot more potential claims to reject since I’ve been going twice a week. Also, Medicare does not cover acupuncture nor elective therapy so even if Medicare was my primary insurance, my work insurance would still have to pay these claims. I wish they would at least stop processing claims while researching the case instead of going ahead and rejecting them and causing me a lot more work later on.

I also skipped cardiac rehab today. It’s been over a week since I went. I missed a couple due to feeling like crap after dialysis, one due to an early work event, and one due to my tooth hurting from a dentist appointment. When I walked out of dialysis today, my legs felt weak so I didn’t want to walk another 30 minutes on the treadmill. I need to get lots of sleep tonight so I can go in tomorrow morning. I can still meet UCLA’s April deadline if I don’t miss too many sessions from now on.

Sleep Update 3/3/2020

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.

Sleep Update 3/2/2020

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.

Medical Issues 3/2/2020

Another six weeks has gone by since my last update so let see if I made any progress:

ESRD: still on hemodialysis; time has been extended to 3:45 per session (4-6 months until possible transplant)
Dialysis access: fistula in and maturing; PD catheter was removed on 1/31/2020 (4-6 weeks until fistula ready for use)
Cardiac Rehab Program: nine sessions done with 15 to go (4-6 weeks until completion)
Peripheral neuropathy: probably not related to amiodarone medication; acupuncture seems to have increased both feeling and intensity of numbness in feet; marginally worse overall (unknown)
Hypertension: on four prescriptions; two of them appears to be prescribed for heart benefit effects; only NIFEdipine seems to have any impact on actual blood pressure
Back pain and pressure in chest: back pain better with occasional pain from sitting in dialysis chair; still cannot sleep to left; better overall (unknown)
Minimal urine production: no change; likely permanent reduction in residual kidney function from failed peritoneal dialysis (wait for transplant)
Insomnia: better but waking up from night sweats and increased neuropathy (unknown)
Dental issues: root canals done with a lot of crowns; may need to extract one tooth but on track for dental clearance (few weeks to months)
Endocrinologist: no change on upcoming appointment (3 weeks)
Lumps in left leg: no change (unknown)
Constipation: still taking Senokot; no change

So overall, very minimal improvements. High blood pressure seems to be better controlled if I take all four medications, and making slow progress with Cardiac Rehab Program. Spent a lot of time and money on dental appointments but only cavities left after this Thursday’s appointment. Not sure what to do with acupuncture since it seems to make the neuropathy more intense. Chest still hurts and also not getting enough sleep. From what my friend in Canada told me, you never really fully recover from heart surgery. He still feels the effects of his quadruple bypass surgery almost a decade later.

Persistent Chest Pains

It’s been 4+ months since the heart surgery. I was recovering fairly quickly in the first few months but everything has been about the same during the last several weeks. I still cannot sleep on my left side, even a little bit. When I do, it would hurt to breathe. Prior to the fistula surgery, I could sleep on my right side but the dialysis nurses told me to avoid sleeping on that side in case I put too much pressure on the fistula. It’s also hard to avoid the whooshing sound in my forearm when I sleep on my right side. That leaves sleeping on my back which I don’t really like. The adjustable bed helps a little but sometimes it’s still hard to breathe while sleeping on my back.

Also, it’s still very painful to cough or sneeze. That part is a bit better than before but I thought it would stop hurting at some point. I guess we’re not there yet.

Walking 2/29/2020

Since I’ve been getting very little sleep at night, I’m taking naps whenever I can. After dialysis, I skipped lunch and took a three hour nap. My mom then decided to wake me and nagged my dad and I to go out for a walk. The weather app said it was 64 degrees out but it was a bit windy so it ended up feeling pretty cold. We walked the regular park route and didn’t see many people out.

I walked 0.98 miles at a pace of 23’52”. I think my dad was feeling cold too so he walked pretty fast. Typically he will ask if I want to slow down the pace but not today. My heart rate was pretty high during the walk as well, according to Fitbit. I did feel more tired than other walks. Not sure if it’s the lack of sleep, bad dialysis session, or not walking regularly enough.

Dreams

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.

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.

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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.

Cardiac Rehab 2/28/2020

Okay, the title is a bit misleading. I actually didn’t go to rehab this morning. The alarm went off at 6:30 am and I turned it off. Then I went back to sleep and woke up at 7:30 am. I think it was early enough for me to rush to rehab then to work but I ended up sleeping another 30 minutes and finally got up at 8:00 am. I managed to get ~4 hours of sleep total which is more than typical but not enough.

I’m stuck at nine sessions completed out of 24. I know UCLA is waiting for me to complete the program but it’s hard to be motivated each morning. I though it would have been cool to work out with my coworker but he’s “grounded” until they fix his pacemaker so he’s not attend rehab either.

Coronavirus Price Gouging

I stopped by a Target and two Albertsons on the way home tonight. All the stores were totally sold out of hand sanitizer. I also looked on Amazon, and much like N95 masks, prices were super high as third-party vendors were engaged in price gouging. For example, an 8 oz bottle of Purell hand sanitizer that normally sells for $2.99 is going for $49 for two. That’s a 750% increase in prices.

*There’s a special place in Hell for people like this*

Like the extra surgical masks, I got a few bottles of hand sanitizer from my PD nurse a few months ago. I was supposed to wash my hands with Dial antibacterial soap, then apply Purell hand sanitizer before connecting and disconnecting the PD catheter. All together, I think I have about four bottles of hand sanitizer and about four boxes of surgical masks. I bought some more antibacterial soap and some hand sanitizer wipes in case the coronavirus pandemic blows up.

We have huge bottles of hand sanitizer at work in each bathroom and also in the mother’s nursing rooms. I wonder how long before some employee steals them.

*My hand sanitizer and antibacterial soap stash*

Peripheral Neuropathy 2/27/2020 (updated)

While washing up this morning, I was thinking that my neuropathy wasn’t too bad. It’s gotten a lot worse during dialysis, especially the left foot. It’s really been bothering me all morning and there is still one hour left on the dialysis machine. I also have a long (and probably painful) dentist appointment right after dialysis so I don’t know how I’m going to sit still for two more hours after four hours of dialysis.

I really think the acupuncture experiment is a fairure. I do believe the feeling in my right foot has improved a tiny bit, but the apparent increase in numbness intensity is making sitting and sleeping more difficult. My worst fear is that there will be no improvement in the peripheral neuropathy after the kidney transplant surgery any my quality of life will still be terrible.

That and knowing the transplanted kidney will fail in 10-15 years is pretty depressing.

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The dentist appointment ended up lasting 3.5 hours so all together, I spent almost eight hours on my ass all day. The pain wasn’t too bad during the dentist appointment and I took a codeine pill when I got home so everything is okay so far. The neuropathy hasn’t let up though. Both my feet are pretty numb right now and difficult to ignore. I managed to sleep for an hour while on the codeine pill. Not sure how I’m going to fall asleep tonight.