I just returned home from attending the support group. There were probably ~25 people that showed up to the group, about half came as a couple (patient + support person), and the other half showed up on their own. There was mix of people that have received transplants, patients still on dialysis, and those that have not started dialysis. There were also some very new people who seems not to have any information regarding kidney disease so about 2/3 of the time was people sharing the most basic information.

Since I’ve been on dialysis for 2.5 years, both hemodialysis and peritoneal dialysis, and I’m a Googling fiend, I already knew most of the basic info. I was telling my sister afterwards that it felt a bit like business school class where you had to jump in to talk. I guess I could have shared more but I usually don’t like talking that much in bigger groups. I was really looking for people sharing their personal experiences, which is stuff that you can’t fine online. I did speak to a few people after the meeting about fistulas and the general consensus is that I should get one.

I know it’s only one meeting but I didn’t get that much out of it. I probably won’t be able to change my dialysis time for each Saturday meeting so I need to decide whether to keep going.

Ok, not ever but I can’t remember when I’ve weighed less. The scale said 90.9 kg or 200.5 lbs. I did cheat a little since it was right before a “shower” so I didn’t have any clothes on. Usually I weigh myself wearing a thin jacket and pajamas. At dialysis, I’ve been leaving my shoes on as well as the same thin jacket. I think those items add about1.5 kg to my weight. I was wearing all that when I came in on a wheelchair so I just kept the same items on.

Maybe if I come in really over my dry weight, I’ll weigh in without my shoes.

Since I wanted to attend the Kidney Disease Support Group at Saddleback Church today, I came to dialysis at 5:30 am. Knowing this, I tried going to sleep at 10:00 pm last night. I can’t remember when I fell asleep but the Fitbit tracker said I was asleep for only one hour and four minutes, from 3:05 am to 4:14 am. I do remember waking up once because I was too hot and thought it was before 2:00 am.

Regardless, I’m really tired right now sitting in the dialysis chair. I did fall asleep after they hooked me up but woke up after only 45 minutes. Right now I have another 2+ hours left so maybe I’ll try sleeping again though the chair is terrible for my back.

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Nope. I did not get any more sleep during dialysis. I need to either fix my sore back, or figure out how to place the pillows on the chair better. I spent the two hour mainly reading Reddit posts. I did get about a hour and a half of sleep after I got home and before leaving for the Support Group.

Dinner for the past eight weeks has typically been a few homemade low sodium stir-fry dishes plus some rice. Depending on the dishes, sometimes I have problems tasting and swallowing food. During those nights, I usually have to resort to a carton of Nepro protein drink.

For dinner tonight, my parents and I had Korean BBQ at Mo Rang Gak in Garden Grove. This is our favorite KBBQ restaurant yet the last time we ate there was about four years ago. Unlike most KBBQ places, Mo Rang Gak is not AYCE (All You Can Eat). However, we have always walked out full. This time, we ordered only a two person combo plus a stone pot rice bowl.

As for healthiness, I think the two areas of concern are sodium and fat. Some of the 반찬 or side dishes are quite salty, and the marinated short rib can be salty and fatty. I didn’t eat that many side dishes since most were spicy, but did eat a lot of the marinated meat. After weeks of home cooking, wow that was good. I get to meet a cardiac nutritionist next week so not sure when I can eat KBBQ again.

The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness for his name’s sake.

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows.
Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord forever.

The visitor today was a pastor from my parents’ church. He is from the same area as my mom in Malaysia so they speak the same dialect; basically Teochew but with some Malay words mixed in. He was trying to encourage me so he shared Psalm 23 with me; we don’t know God’s plan but we trust that it will work out in the end, no matter how bad it looks now.

So this ties in to another thought I’ve been having lately. It’s a different “Why?” question then what I previously posted. Instead of “why are all these bad things happening to me,” I’m wondering “why am I still here?” Or more specifically, “why am I not dead?” The mortality rate for dialysis patients is not good. According to UCSF:

Mortality rates vary depending on the ESRD treatment. After one year of treatment, those on dialysis have a 20-25% mortality rate, with a 5-year survival rate of 35%.

I’ve been on dialysis for 2.5 years now and I’m still alive. In addition, the leading cause of death in the general population and dialysis patients is cardiovascular disease. By stupid luck, I think I survived a heart attack that I did not feel, and now recovering from bypass surgery which basically gave me a refurbished heart. Why am I not dead?

From Psalm 23, it sounds like King David is in a bad place. He uses words like “the valley of the shadow of death” and “I will fear no evil.” Yet David chooses to trust that God will provide for him and lead him. Is that the lesson? The visiting pastor said that I may be going through all this so I can be a comfort to other in the future. That’s great and all but seems like a high price to pay for the privilege. Maybe I’ll learn more at the Kidney Disease Support Group tomorrow.

I am reminded that Jesus experienced crucifixion an death for our sins so whatever “suffering” I’m experiencing pales in comparison.

I walked only 0.65 miles today at a pace of 21’54”. Huh, that’s pretty quick. I didn’t notice I was talking that fast. It was a short walk because we were expecting a visitor so I only had 15-20 minutes. Once again, the weather was nice and sunny but not too warm.

I picked up all the new prescriptions from the podiatrist. There was one pill and two ointments. The pill is terbinafine which is generic for Lamisil. I was right though. The pharmacist asked me to check with my doctors again if taking both together is okay since an interaction will cause my heart beat to slow down a lot. So I sent out a bunch of messages in the various medical portals.

Drug interaction

Most of the Google searches comes back with Metoprolol Succinate ER which is a different drug than what I’m taking, Metoprolol Tartate. Don’t know if they have different drug interactions.

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I sent messages to my nephrologist, cardiologist, and podiatrist at around 2:00 pm. Only my nephrologist returned my message. She is awesome. Did I mention before that she was the one that persuaded me to go to the ER prior to my heart surgery? Anyway, she thinks the terbinafine is okay but I should keep close tabs on my pulse to make sure it doesn’t drop. I’m at about 63 resting pulse now so there’s not much room to decrease before I have bradycardia.

OK, that wasn’t the end of the world. My blister on my toe, which was my most immediate worry, is no big deal. He scraped away some of the dead skin and said it was pretty much healed. He didn’t like neuropathy or circulation so he ordered a lower arterial scan. I think I did one before but it’s been a few years. He also gave me a referral to a orthotics place. I went there before and they charged my insurance $300 for a pair of New Balance shoes that I can buy on Amazon for $60. They did give me a bunch of inserts that were pretty good. Finally, I managed to pick up another prescription for Lamisil for a foot fungal infection. I got some Terbinafine cream before but didn’t use it because it supposedly reacts with beta-blockers like Metoprolol.

I also asked him about acupuncture. That does not appear to be a problem as long as I find a legit acupuncturist that uses clean needles.

I have another doctor’s appointment later this morning. It’s the first time seeing this podiatrist. My last podiatrist packed up his bags and moved to Arizona. He mentioned this as an afterthought during our last appointment. The podiatrist I’m seeing today replaced him in the same office so hopefully all my medical records are still in their system but I’m not hopeful. I’m showing up 30 minutes early in case I have to fill out my medication list for the 20th time.

Seeing a podiatrist is important for a diabetic patient. Since I have peripheral neuropathy, the combination of poor blood flow and lack of sensation means foot injuries may not be detected right away, and healing will be slow. Infections or ulcers can spread very quickly as I experienced five years ago with my right ankle/heel. I think my feet are okay now except for a persistent scab on my left toe; it’s dry and not weeping but not healing 100% either. I think there may be a fungal infection in that foot so I need the podiatrist to check it out. On my right foot, the 2nd toe is a bit curved, like there’s something wrong with the connective tissue. That may have been caused by a broken toe not healing right but I can’t remember the sequence of events.

Finally, I’ve been looking at finding an acupuncturist. I probably need to find out if it’s okay to have someone poke holes in my foot. I think they won’t stick anything in the soles of the feet but may put needles in to top of my foot. I’m also thinking of getting reflexology or foot massages. I think that’s probably okay but I should check with the podiatrist.

Again, I’m wary each time I go see a doctor since there’s usually only bad news. Here’s hoping I won’t have too many new medical issues to add to my list today.

I was reviewing all my medical claims this past year, and there are a lot, when I noticed a claim for ambulance charges from the City of Orange Fire Department. I took two ambulance rides since being discharged from heart surgery, but they only filed a claim for the second occurrence. Since I participate in the Paramedic Subscription Program, I thought all ambulance services were covered. The second ambulance ride was from the dialysis clinic to the ER within the same hospital. Google maps put the drive at ~2,140 feet or ~0.4 miles. The claim was for $1,582.40.

Reading the fine print on the subscription program, I see the following:

For just $48 per year, the voluntary program Paramedic Subscription Program provides coverage for fees associated with any Paramedic services or emergency transportation that are not covered by your insurance. This coverage applies to any person at a subscribing address, whether a residence or business.

Notice the two words: subscribing address. My first ambulance ride was from home so it was covered. I’m guessing the second ride, since it did not originate from my house, was not covered. Luckily the entire amount was covered by my work insurance, even though it was classified out-of-network. I think it’s a scam that in addition to paying ~$9,000 in property tax, I still have to enroll in this program, and it doesn’t count if I get hurt outside my house.

This sets up the wrong incentive. If I get hurt near my house but not inside it, e.g., in a neighbor’s yard, I’m going to make sure I get home somehow before calling 911. The difference could be thousands of dollars in ambulance fees.

After weeks of not smelling anything weird, I’m smelling cigarette smoke again. I think it was triggered by actual cigarette smoke. When I visited work yesterday, a few of us went to lunch at Shinsengumi ramen. While we were waiting outside for a table, I smelled cigarette smoke that was probably real. Maybe that irritated my sinuses or something because I’ve been smelling cigarette smoke ever since. I flushed using the saline nasal rinse last night, using filtered water of course, and I just sprayed Flonase in both nostrils.

Since the phantom smell went away by itself last time, I’m less worried. It’s likely actually pollutants or something triggering the symptoms so this occurrence will probably go away on its own later. Meanwhile, it’s just another distraction making it harder to fall asleep.

=========

It’s about 1:00 pm the next day and I haven’t smelled any phantom smell yet. Intermittent symptoms are the worst to deal with.

The weather was much colder today. I think Apple weather shows 61 degrees outside. However, the sun is shining so it was a bit warm inside my black jacket. I walked 1.0 miles at a pace of 24’01”. Today was a dialysis day so I felt a bit tired even at the beginning of the walk.

I’m a bit concerned about cardiac rehab orientation next week. The appointment is on a Thursday after dialysis and they said to wear loose fitting clothes and athletic shoes. I think there will be some physical tests, maybe to set baselines for improvement. I still have to work out scheduling since I am returning to work weeks before the program is complete.

I just noticed a flyer stuck on a bulletin board at my dialysis clinic. It’s the schedule for the Kidney Disease Support Group at Saddleback Church. I received a very welcoming reply to my email and the same schedule was attached.

I was able to move my dialysis session to 6:00 am this Saturday so I can make the meeting. I also got my sister to agree to join me since they said to bring a friend. Now that I’m supposed to get a fistula, I’m a bit freaked out about the surgery so talking to other patients may help.

==========

I just called the dialysis clinic to confirm the time change on Saturday and now they want me there at 5:30 am. I think the clinic opens at 5:30 am so at least they won’t ask me to come in even earlier.

Above is the sleep record from Fitbit. Not sure how accurate is it since I think there are short naps that were ignored. Anyway, there’s definitely an improvement over time from about four hours per night to five hours this week. My sister gave me the more advanced tracker on December 22; I was using just the very basic Fitbit tracker before.

For today, I went to sleep around 11:38 pm and woke up at 6:04 am. That should be ~6.5 hours but Fitbit said I was awake for 57 minutes during that period. I do remember being up just before 4:00 am so maybe it’s accurate. Out of that time though, there was very little REM or deep sleep so even though I just woke up, I still feel a bit tired. I think my room is still too hot so I’m going to try turning off the space heater tonight to see if it improves my sleep time.

IRMAA stands for Income Related Monthly Adjustment Amount. It’s basically a surcharge for Medicare Part B premiums based on your salary from two years ago. So for me, instead of paying the base $135.50 per month, it’s something higher, much higher.

Based on my tax return AGI (Adjusted Gross Income), I would need to pay a monthly surcharge of $297.90 or a total of $433.40 per month. I don’t know how much my clinic charges Medicare but if we use the DaVita rate of $260/session, then the monthly cost is ~$3.380. I’m pretty sure if I asked for the non-insurance rate, it won’t be less than the Medicare reimbursement amount.

I guess I’m paying an extra $5,200/year for Medicare since my work insurance won’t pay for dialysis anymore after March.

It’s the beginning of a new year which means all my work insurance limits reset. The primary number I’m concerned about is the out-of-pocket maximum which I believe is $3,400. Usually for each medical claim, there is a co-pay: $25 for primary care, $40 for specialists, 15% for hospital services, etc. I need to pay the co-pay each time until my payments for the calendar year hits $3,400 at which point insurance will cover 100%. I think dialysis is covered under hospital services. Here are totals from the January 2019 statement:

The first number ($30,703,23) is the cost without benefits or the MSRP. Second column ($22,413.46) is the plan rate or the rate negotiated by Blue Shield with my clinic. The third column ($19,176.95) is what my insurance paid, which means the balance is my responsibility. In February, the plan rate was $20,939.61 (probably less days than January) but I paid $0 because with the $3,235.50 that I paid in January and some other doctor visits, I’ve hit my $3,400 out-of-pocket maximum. I also paid $0 for the rest of the year for dialysis.

For 2020, I also signed up for the maximum amount on a FSA plan which is $2,700. This amount is a pre-tax deduction on my payroll so I will save about 1/2 of that on taxes. I can use the $2,700 on most medical expenses, including my share for January 2020 dialysis. But wait… I’m supposed to get Medicare starting 1/1/2020 with a monthly premium of ~$144. Medicare is supposed to pay for anything my insurance does not so it should pick up the 15%. In that case, I will then continue to pay co-pays for doctor visit (unless Medicare covers non-ESRD costs) and prescriptions. Knowing I can use the FSA money for my pending root canals and crowns that don’t count towards my medical out-of-pocket maximum, what should I do? Pay for January 2020 dialysis co-pay with the FSA or let Medicare pay? What about dental bills? If I continue therapy and start acupuncture, I will pay $40 co-pay for each session unless I max out. This is like a math puzzle. I think I need to sit down and calculate out each scenario and associated payments.

At work today, I talked to a coworker who said she was seeing an acupuncturist. This coworker is probably the healthiest person I know so I was surprised that she was into acupuncture. She also mentioned insurance so I went to our health provider website (basically Blue Shield of California) and searched for acupuncturists near my house. I was expecting only a few hits but there were 57 listings withing 5 miles of my house. Some of them are for multiple people at the same business but holy crap, that’s a lot of acupuncturists.

I cross referenced the insurance list with a list of acupuncturists on Yelp, and almost all of them have a 5 star rating. Ugh, ratings are not useful if everybody has a perfect score. I ended up reading through all their websites, looking for ones with multiple acupuncturists and those that look more “medical” vs. health/nutrition. Some also combine acupuncture and chiropractic together. I need to start calling to see if they have experience in treating diabetic peripheral neuropathy. Finally, it seems like there are a lot of Korean acupuncturists but that could be just where I live.

Here’s a list of candidates:

Evolve Integrative Health

Green Jade Acupuncture

True Health & Wellness

Green Harmony Acupuncture Clinic

Plum FamiLee Acupuncture

Some of the websites list liver/kidney problems under conditions treated. I’m still not sure what to do with that. Should I be angry that an acupuncturist thinks they can “cure” end stage renal disease? Or should I be hopeful that they can restore some kidney function? As I mentioned before, I’m a skeptic when it comes to TCM and holistic medicine but willing to accept acupuncture as a last resort for peripheral neuropathy.

Ugh, now I can’t stop thinking about what if…

Since I have nothing scheduled today, I called up my boss’ assistant and scheduled a meeting to discuss my eventual return to work. I left the house around 10:00 am and got to work around 10:45 am. I pulled up to the parking garage and my badge would not open the gate. I let a car behind me use his badge and was able to drive in and park. I then went straight to the lobby since it was evident that they inactivated my badge. In the lobby, the receptionist called up HR and basically told me that since I was on medical leave, unless I had a not from a doctor saying I was able to return to work, I cannot enter the building. I guess it’s CYA in case I was still “sick” and got injured at work.

Since I could not enter, I asked the receptionist to call our assistant to tell my boss that he would have to meet me in the lobby or something. Since he was the CFO, usually he can get some rules bent. In the meantime, about four coworkers came to the lobby to greet me. After about 10 minutes, someone from HR came down and said they made an exception so I can enter the building for today. I work in a cubicle; there’s not much chance that I will injure myself.

I spent the next 20 minutes greeting coworkers and explaining that I’m not back yet, and this was an one day visit. I went and met with my “new” staff that were hired after my surgery, and a couple of new analysts in the department. Next I met with my boss and updated him on my health situation and planned return date. He was agreeable to everything and just happy that I’m recovering well. For lunch, a few coworkers and I went out to a nearby ramen shop. After lunch, I helped out with a few issues and talked to more coworkers, finally leaving at ~3:30 pm.

It was a good visit to see all my coworkers after eight weeks. I’ve know some of them for close to 20 years, having worked at the same previous company, so many are good friends too. Some of there were really worried about me since I just stopped showing up for work one day. It was also good for me to know that I could drive two hours round trip without being too tired. After working non-stop since high school, I’m not used to sitting around idle.

At the beginning of every year, our church plans a corporate fast where the entire church is invited to fast and pray. I didn’t participate this year since I’m still having problems with eating and fasting while recovering from heart surgery is probably not recommended. There’s also a prayer meeting each night during the fast from 8:00 pm to 9:00 pm. Even though I’m not fasting, I think I’ll go to church tonight.

Today’s scripture reading is from James 5:13-20.

Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven

I’ve posted about this before but I struggle a lot with faith and healing. I’ve always had a hard time with faith, even early in my Christian life, but the recent medical struggles was a real challenge. Verse 15 clearly says “the prayer of faith will save the one who is sick, and the Lord will raise him up.” The obvious thought is that I don’t have enough faith, which is probably true. But what about everyone else at church? Is there not one faithful person praying for me? At this point, I feel like I’m just repeating myself. I don’t understand God’s plan in all this but I feel I have to continue praying, for healing because that all I’ve got.

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Just got back from church. There was a lot of people there, probably a couple of hundred, much more than I expected. First prayer was 30 minutes for ourselves, next 10 minutes were for revival, then the pastor asked people who needed prayer and healing to stand. I stood up and about 5-6 people surrounded me and laid hands for prayer. Finally there was a short prayer time for seeking and wanting to know God more. There is a prayer meeting each night of the fast until this Friday.

After five or so more calls with the same result just now, i.e., being hung up on by the automated phone system, I wrote a letter explaining my situation, enclosed their letter, and attached a printout of the SDI Online website. Hopefully, their mail system is better than their phone system. I tried to keep the snark to a minimal level. The only part that can be seen as a complaint was:

I tried to call the 800 number listed in the letter to ask the same questions but after over ten calls, I was unable to even wait for a representative. I was hung up upon by the automated phone system each time so the only option left was to write this letter. Hopefully you can let me know whether I need to do anything else to complete my claim.

Although probably unnecessary, the paragraph was concise and polite. I’m not really expecting an answer from them since customer service seems like a foreign concept based on their phone system. I’m hoping that the online status is accurate, and even though they sent a claim error letter, their system still accepted the online form sent in by my cardiologist’s office. $1252/week is on the line!