Coordination of Benefits, Part IV

I’m so frustrated with all this. I called our work insurance service provider again today and spoke to the claim supervisor. It turned out he has been out sick so he never got back to me. Anyway, their conclusion is that after 30-months of dialysis, Medicare becomes the primary insurance for all claims. Therefore, I need to have all my providers bill Medicare first, then any remaining amount will be paid by my work insurance. The problem is that Medicare starts three months after the first dialysis date of July 5, 2017, so by rejecting claims after January 5, 2020, my insurance is off by three months. The rules are so confusing that each time I call my insurance or Medicare, the answer seems to change. I’m now getting invoices for this failure of benefits coordination.

Because of this confusion, I’ve stopped seeing my therapist and acupuncturist. I also have several upcoming appointments to see the cardiologist, primary care physician, endocrinologist, and others. I feel like I need to postpone those appointments until the insurance situation is cleared up. My work insurance also started rejecting my cardiac rehab claims so I’m not sure how to continue there since the hospital doesn’t seem to want to bill Medicare on my behalf.

Fistula Ready?

I had an appointment with the vascular surgeon that put in my fistula today. Last time I went and saw him, I had to wait over an hour. Today, the entire waiting room was packed with patients but they called me in while I was still signing in. I guess my appointment is super brief so they wanted to get me out of the way. The surgeon saw me after only two minutes and said the fistula may be ready for use. He then got a market to trace out the vein’s route through my arm so the dialysis techs know where to poke. I think I’m supposed to try using it this Thursday.

The vein splits into two further up the forearm so I’m supposed to tell the techs to use the portion between the small scar to where the vein splits. The tech told me that they would use only one needle first, which will further mature the fistula. The vascular surgeon also said that he will remove the chest catheter in his office when the fistula is fully matured. For my first chest catheter, I had to go to the main hospital to get it removed.

I thought it would be several more weeks until we starting using the fistula. The surgeon did say if the techs couldn’t get the fistula to work, we need to wait several more weeks. I’m afraid that by using it too early, they will damage it and I will need another surgery to fix it.

Peripheral Neuropathy 3/10/2020 (updated)

Wow, the numbness and tingling in my feet is driving me crazy today. It felt really intense this morning while I was trying to sleep. The combination with my chest pains kept me from falling asleep all night/morning. Now during dialysis, it feels even worse and I’m not sure why. My weight and fluids are not that high compared to last session.

I don’t know what to do. There’s still 2.5 hours left and I’m starting to feel like I did that time in December when I had to go to the ER. I don’t want that again.

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I asked the technician if I can stand up and stretch my legs and he said no. I think they’re really worried about low blood pressure and me fainting if I stand up. My sitting blood pressure is at 152/85 so I think it’s ok to stand. Anyway, he gave me a paper towel soaked in ice water to put on my head and neck. That helped to cool me down a bit but doesn’t do anything about my neuropathy. I feel a bit better and sitting up as much as possible to stretch my left leg but it still sucks. 2:04 left on the dialysis timer…

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There’s an old Hispanic guy in the chair in front of me. He’s confined to a wheelchair and I’ve never heard him speak English. He alternates between sleeping and looking over at me. I’m not sure what he wants.

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19 minutes left. I’m not sure how I lasted this long. My nephrologist came by on her rounds so that distracted me for 15 minutes. The problem is they lowered my dry weight some more to 90 kg.

16 minutes left. I was going to ask them to let me off a few minutes early since my session will end right at 1:00 pm and I have another appointment at 1:15 pm right across the street. It’s really busy in here though. I’ll try to put on the manual tie-on mask now to save time.

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It’s now 6:20 pm and at home. I had an appointment to see the vascular surgeon after dialysis. The plan was to go to cardiac rehab after that but I was so tired that I just came home around 2:00 pm. I then took a long nap since I did’t sleep this morning but when I woke up, the numbness and tingling in my feet was even worse, if that’s possible. I had to walk around the upstairs hallway in my house to try and get the feeling to subside.

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*

Ramen Lunch Nutrition

I had lunch with a friend today. He came by work to pick me up and we went to Shin-Sen-Gumi Hakata Ramen in Gardena. I’m always worried about eating here because the ramen broth is probably very salty so I try not to drink any of it outside of slurping the noodles. Their website does not provide any nutritional information but I found some on MyFitnessPal:

Nutritional Item	Hakata Ramen
Calories	850
Total fat	26 g
Saturated fat	5 g
Trans fat	NA
Cholesterol	30 g
Sodium	1,000 mg
Protein	21 g
Calcium	11%
Potassium	NA

myfitnesspal.com

The nutritional information looks wrong. There’s got to be more fat in the bowl of ramen. You get two pieces of chashu pork, which has a ton of fat, plus all the grease in the ramen broth. I also think there’s more than 1,000 mg of sodium. I also had a small beef bowl (gyudon) for lunch so add more fat, sodium, and carbs to the info above.

Good thing I skipped the breakfast burrito at work this morning.

Breakfast Burritos at Work

I love breakfast burritos with bacon, though I haven’t had any since my heart surgery. At work, the cafeteria usually has a breakfast burrito available every morning but the ingredients vary by week. This week, the description says Bacon Jalapeno Breakfast Burrito: Eggs, Potatoes and Bacon-Jalapeno Cheese Sauce wrapped in a Flour Tortilla served with a Side. I thought about getting it but then I looked at the nutritional information:

Nutritional Item	Breakfast Burrito	Italian Sandwich	Hot Dogs
Serving size	272 g	377 g	326 g
Calories	640	870	1,000
Total fat	33 g	47 g	70 g
Saturated fat	12 g	18 g	26 g
Trans fat	0.5 g	0 g	3 g
Cholesterol	190 mg	115 g	120 mg
Sodium	1,260 mg	2,600 mg	2,610 mg
Total Carbohydrates	64 g	70 g	62 g
Dietary fiber	0 g	1 g	0 g
Total sugars	4 g	8 g	8 g
Protein	22 g	43 g	34 g
Calcium	211 mg	369 mg	80 mg
Potassium	402 mg	379 mg	NA

Work intranet menu

Ugh, that’s a lot of saturated fat and sodium. I would have to cut back a lot on the rest of my meals today if I ate the burrito for breakfast. Also, if there’s nothing good on the menu for lunch, I usually wait until 2:00 pm and get an Italian Sandwich. I thought I was being healthy but looking at the nutritional information, it’s worse than the burrito. The ingredients contain: Salami, Ham, Capicola, Provolone, Shredded Lettuce, Tomato, Onion, Oregano, Vinegar, EVOO, and Sweet Peppers on a Hoagie Roll. I think all the different meats have lots of fat and sodium. We also get a small bag of potato chips with the sandwich but I’ve been giving that away.

The other post lunch food choice is Two All Beef Hot Dogs on Potato Buns. I used to get this too but stopped due to all the phosphates in hot dog wieners. I also put a lot of ketchup and onions on the hot dogs, which probably adds even more sodium. It appears to be the worst choice for lunch nutritionally. Why does everything that tastes good so bad for you?

I guess it’s hard to estimate the nutritional information by taste alone.

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.

Eating Out

I was supposed to meet an ex-coworker for lunch today (Sunday) but he had to cancel. We were going to eat at Boiling Point in Irvine so instead, I went with my parents there for dinner last night. Boiling Point is a Taiwanese hot pot restaurant located in Heritage Plaza in Irvine. Due to the COVID-19 hysteria, my dad thought there would be no one eating out, especially at Heritage Plaza where half the stores/restaurants are Asian.

Anyway, we ended up waiting about 20 minutes for a table. Surprisingly, only one person (a customer) in the entire restaurant was wearing a surgical mask. He was wearing it while eating so I’m not sure what’s going on there. If you’re really sick, then stay home! The restaurant did have a huge bottle of hand sanitizer at the front counter and everyone used it to clean their hands. I had to sign in to the wait list using an iPad so definitely a high-touch object.

Food was pretty good. Three of us ended up sharing two pots since my parents don’t eat that much. We got some additional items to add to our pots so it was still ~$40 for three people. Even though there was a wait list, there were some empty tables and the servers seemed really busy. Maybe instead of customers, restaurant workers are staying home to avoid the virus?

Chaplain Intern, Part III

The intern came by again today. I asked him about his schedule since it wasn’t Thursday or Friday and he said he was on-call today; he has to be on-call for a certain number of days. We chatted a little about weekend plans then he gave me homework. He wanted me to think about what Lazarus thought after Jesus raised him from the dead. I think the story is from John 11:1-44.

43 When he had said this, Jesus called in a loud voice, “Lazarus, come out!” 44 The dead man came out, his hands and feet wrapped with strips of linen, and a cloth around his face. Jesus said to them, “Take off the grave clothes and let him go.”
John 11:43-44 (NIV)

I’ve read this many times since it deals with ultimate healing. If God can raise the dead, surely he can heal something trivial like kidney failure. However, the verse right before is important. Jesus basically said the purpose of healing is to show people the glory of God. That also means that there is a reason for our sickness and suffering.

How did Lazarus feel after being raised from the dead? The Bible said Lazarus was sick, probably for awhile. I think before he died, Lazarus probably though, “Why doesn’t Jesus just heal me?” I know I’ve thought that on plenty of occasions. Afterwards, he would likely be very grateful, but as Martha and Mary said to Jesus, “if you had been here, my brother would not have died.” (John 11:21) Lazarus probably wondered why God let him suffer through his sickness, even letting him die, when healing could have come earlier?

Do I believe God can heal me? Of course. But I’ve stopped asking the “Why?” question since we’ll never know or understand. I believe I will be healing one way (miracle) or another (kidney transplant) in the end, otherwise the despair would be overwhelming. I also don’t know how God will use it to show His glory, but I’ve got to believe that’s the reason behind my suffering too.

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.

Chaplain Intern, Part II

The Korean chaplain intern stopped by again today. So far, he just dropped off a piece of paper. It looks like he’s starting a weekly newsletter and coming by the dialysis clinic on Thursdays and Fridays. On the newsletter, called The Rainbow Weekly, he translated a Korean poem titled 꽃 (The Flower) by Kim Chun-soo. There’s a different translation here.

I’m not sure where he went after dropping off the poem. He said he’s here from 8:00 am to 5:00 pm so maybe I’ll get to talk to him before I’m done today. I wonder if he listens to K-pop.

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.

Traditional Chinese Medicine

My acupuncturist mentioned today that she wants to me to try some herbal medicine. Since I’m Chinese, I’ve tried some of this stuff growing up. Usually it’s more of a supplement than actively trying to cure something. For example, some of the Chinese desserts my mom makes has goji berry (枸杞) and snow fungus (银耳) in it.

I’m a bit concerned since I’m on a lot of medications already. My acupuncturist did ask for my list of medications but I wonder how much Western Medicine is covered in an Oriental Medicine degree? For Chinese herbal medicine to be effective, it will probably interact with some of my current medications. There are a lot of websites with herbal information so I guess I also need to do my own research.

I hope she sticks to herbs and plants and doesn’t give me weird or endangered species stuff like rhinoceros horn or pangolin scales. I also need to ask about cost since it’s likely none of this is covered by insurance.

More Fistula Nightmares

I saw another patient’s arm today while the technician was hooking him up to the dialysis machine. It’s even uglier and scarier looking than what I saw last week. He had several huge purple lumps the size of golf balls in his arm. The tech would poke the needles right into the middle of it. Meanwhile, one of the nephrologist checked out my new fistula and said it’s almost ready. Again, I hope that it won’t blow up at first use. Maybe the fistulas I’ve seen are super old and new ones aren’t that freaky looking.

I was going to place a picture here but they’re all too scary looking. Just Google “dialysis fistula” and click on images.

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.