Health Insurance F*ck Up

I just checked my work health insurance activity and they rejected all sorts of claims, even after my phone calls and emails clarifying that Medicare is secondary insurance, not primary. I called their customer support and it seems that they are still researching my case. They still think Medicare pays primary until 30 months or something. During our last conversation, a supervisor clearly said they were going to make a note about Medicare being secondary insurance in my files, and reprocess all messed up claims. I guess not. Now there are even more messed up claims, some for thousands of dollars, that I have to deal with with time I don’t have.

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.

Work Update 3/2/2020

It’s been about a month since I returned to work. I’m only going into the office three days a week due to my hemodialysis sessions on Tuesdays and Thursdays. I still feel out of sync however. I’m not making much progress learning the new system we put in while I was on leave, and I can’t focus on other projects. I’ve been letting my junior analyst take care of all the regular tasks but she is out this entire week so I have to get some reports out. My boss is also expecting a 90 day plan; I don’t have any ideas yet.

At home, it’s also weird. I spend four out of seven days at home so it doesn’t feel like I’m back to work. I still lose track what day of the week it is sometimes.

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.

Dialysis 2/29/2020

Arg! The numbness in my left foot is driving me crazy today. It was not that bad this morning but started getting worse as soon as I sat down in the dialysis chair. I’ve been watching YouTube videos and thought a lot of time has passed but in reality, it was only about an hour. There is still 2:35 left on the dialysis machine. Where is my fast forward button?!

I’m in a new seat today. Not sure how the musical chairs work but I’m in the “other” corner of B pod. I hate sitting in the corners. You feel even more. Isolated from everyone and everything.

I also was able to take a clear look at another patient’s fistula. It’s in his forearm, purple, and about 1 x 2 inches in size. I hope my doesn’t end up looking like that or worse. It’s super ugly and gross.

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*

Fast Forward Button

Staples used to have a commercial that featured an “easy” button. Whenever you had a difficult problem, you pressed the easy button and your problem would be solved. I’m looking for a fast forward button. It would be super useful for dialysis sessions and dentist appointments.

I thought about this a lot during the first few weeks of heart surgery recovery. It’s all just a memory now but I had a difficult time right after coming home from the hospital. I was too weak to climb the staircase so I had to sleep in the family room recliner for weeks. Other than dialysis, I spent the entire day sitting in the same recliner, and needed help just to stand up. A fast forward button would have been super useful to bypass all those weeks of suffering. Same thing for dialysis since I’m just sitting there. It would be great if I could just jump to the end of the session instead of staring into space for four hours.

The equivalent is probably taking a nap but I have difficulty falling asleep, especially while sitting. This sucks for long airplane flights. When I traveled to Asia quarterly, I would be awake for the entire 14 hour LAX to Hong Kong flight. Before Cathay Pacific installed on-demand entertainment, you had to watch whatever movie was shown on the few video channels. I wished for a fast forward button there too.

Even now, I sometimes wish I can jump forward in time to post-kidney transplant. Life is not so enjoyable now so I’m okay with skipping the next six months of life and replacing it with some fading memories.

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.

Dialysis Sick Day

My dialysis nurse was still out sick today. On Tuesday, I think they brought a MWF shift nurse in as replacement since I’ve never seen her before. Today, it was a different replacement nurse. She does work TTS shift and was actually my first dialysis nurse back in 2017. Everyone then rotated out after three months and our schedules never matched since then. I think she also had a baby too. Yes, she is Filipino.

Back then, I didn’t know about the schedule rotation so I though the nurses and techs were permanently assigned. I also thought I would be on dialysis for only a few months until I get a transplant. HA! Anyway, I gave my “team” some swag from work. I think I gave the nurse a mug and an offer to take her family on a factory tour at work. That was 32 months ago; I wonder if she remembers.

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I hope my current dialysis nurse didn’t get the coronavirus. That would be a disaster here at the dialysis clinic since most patients are pretty sick already.

New Headphones

I bought a pair of wireless earbuds for use during dialysis. I had received a pair of Apple AirPods 2 during Christmas and really liked them so I wanted to get a cheaper second pair. I ended up getting a pair of TOZO T10’s from Amazon for ~$32. Much cheaper then the AirPods.

They sound pretty good since they have rubber earpieces that squeeze into your ear canal. The bass is definitely stronger than the AirPods which just sit in your ear opening. Usually when there are multiple earpieces, I use the smallest ones for a better fit. However, I may need to change them since the earbuds keep falling out of my ears. I sat reclined in the dialysis chair for ~30 minutes and both earbuds fell out 5+ times. Apple stuff are usually really expensive but their industrial engineering is top notch. The AirPods hardly ever fall out of my ears, even during exercising.

Also, to get the T10’s to stay in my ear, I have to press pretty hard. Since the rubber earpieces are supposed to seal against your ear canal for noise cancellation, it pushes air in your ears and raises the air pressure. Not comfortable, especially if I’m trying to sleep during dialysis.

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I just read on TOZO’s website that you’re supposed to give the earbuds a quarter turn after inserting them in your ear. I guess I’ll try that first before changing the rubber earpieces.

URR Retest Results 2/20/2020

Finally, some good news. The previous clearance test came back as inadequate with an URR of 62.2%. I was afraid that they were going to extend my dialysis time again. However, since the dialysis machine alarmed several times that day, my nephrologist asked the clinic to run the clearance test again. Well, the results came back and the updated URR is 65.5%, which should be enough to clear me for another month. I really didn’t want to sit here longer then absolutely necessary.

Dialysis Blood Pressure 2/27/2020

I’m off to a bad start. First two sitting blood pressure readings are in the 190’s. I forgot to take the NIFEdipine ER pill last night since I fell asleep at 10 :00 pm. I did take all my blood pressure medications this morning but wasn’t sure if the ER effects carry over from last night. I guess it takes four pills to lower my blood pressure to normal levels.

I’m debating whether to take another 10 mg of NIFEdipine sin e blood pressure may get worse as some of the other meds get dialyzed out.

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Hmm, not sure what is happening with my blood pressure. I’ve been sitting up blogging so the reading should be slightly better. The last reading at 10:50 am was 164/89/60. Usually the readings start increasing aroun 11:00 am as the Metoprolol starts getting dialyzed out.

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The reading at 11:20 am was 151/82/61. Doesn’t make any sense.

Sleep Update 2/26/2020

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.

Fistula Facts

One of the dialysis techs came by to check out my fistula. He said it looked and felt fine, then offered up some random information about fistulas.

He said not to rush into using the fistula before it matures since it may blow out. If that happens, then I have to go back to the chest catheter. I didn’t ask him what happens if we’ve already removed the catheter. Also, I thought they (dialysis clinic + nephrologist) decided when the fistula is ready for use, not me.
Even if the fistula matures, it could still blow out when used properly. I would rather keep using the chest catheter but everyone said I need the fistula.
When the fistula is ready, they will start with only one needle in the fistula and connecting one of the ports on the catheter. I think this will continue to strengthen the fistula so it doesn’t blow out and fail. Not sure how long they will run with this “hybrid” connection. I guess the catheter is not going to be removed immediately.
I need to exercise the fistula with a squeeze toy. The clinic gave me one that looks like a large pill to exercise and grow the fistula.

Dialysis 2/25/2020

Ugh, I feel terrible today. The neuropathy in my feet is probably the worst it’s even been. It feels like that time in December when I was sent to the ER from the dialysis clinic. It’s also hot in here for some reason. Usually it’s freezing inside the clinic but today, I had to get help to remove my jacket and it still feels warm. I can feel a panic attack coming and there’s over three hours left.

I also got only three hours of sleep this morning so I’m super tired. I’m called into my boss’s staff meeting right now and it’s hard to concentrate. I was going to cardiac rehab right after dialysis but I think I need to go home and take a nap. I still have two more appointments (therapist and acupuncture) this afternoon.

I’m actually a bit worried about my neuropathy and acupuncture. The numbness is probably not related to my Amiodarone prescription so likely acupuncture is having an effect. I do feel more in my feet but the numbness is increasing in intensity and feels worse overall than before.

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I came in to dialysis today at 94.5 kg. That’s 3.5 kg over my “dry” weight. My regular nurse is out sick so the substitute nurse asked me how much fluid to take out. We settled on 3.0 kg for today. I think there may be some correlation between lower leg edema and neuropathy intensity. It’s hard to control fluid intake on workdays with all the available free drinks. I usually start falling asleep late afternoons so need a cup or two of coffee to stay awake. If I was at home, I would just go and take a nap and skip the extra fluids.

Pre-Owned Private Jet

Speaking of private jets and expensive toys, I received an email at work form someone selling a 2006 Gulfstream G550. These are pretty large private jets and a 14 year old used one goes for about $15 million.

Interestingly, we (the company, not me) currently owns a Gulfstream G650ER and is in the market for a backup jet. First choice is actually a used G550 for sale by Chevron. I’m not sure how a random jet broker found my contact info… Google search metadata?

Anyway, the operating cost for these are pretty high. This website calculates it to be about $7,000 per hour assuming 400 hours per year. I think we’re looking to use it as a daily shuttle between office sites so ~2,000 hours per year at an estimated cost of ~$10 million.

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Traveling would be so much easier if I was still on dialysis and owned one of these jets. Dialysis at Sea uses Fresenius 2008K home dialysis machines on cruise ships to provide hemodialysis. I wonder if you can install and operate one on a private jet. I guess it depends on how air turbulence compares with ocean swells on a cruise ship. If you’re rich enough to own and operate a G550, you should be able to hire a private nurse for dialysis. You can hook up to the machine prior to take-off and finish dialysis while in the air. If you’re carrying your own machine and supplies, international travel should be feasible. You just need to come back to the jet for dialysis sessions.

There is zero information on the feasibility of getting dialysis while on an airplane flight. All the search results is about taking your home dialysis machine along on trips. I guess most dialysis patients don’t own a private jet.