There’s usually a fish option for lunch everyday at work. Today, the fish option is halibut. This is my lunch today:
Item
Halibut
Rice
Dinner Roll
Broccoli
Corn
Total
Serving Size
198 g
113 g
37 g
113 g
113 g
574 g
Calories
330
200
90
110
150
880
Total Fat
19 g
9 g
1 g
9 g
7 g
45 g
Saturated Fat
11 g
0.5 g
NA
0.5 g
3.5 g
15.5 g
Trans Fat
0.5 g
0 g
NA
0 g
0 g
0.5 g
Cholesterol
135 mg
0 mg
0 mg
0 mg
15 mg
150 mg
Sodium
470 mg
100 mg
160 mg
125 mg
120 mg
1,020 mg
Total Carbs
2 g
27 g
18 g
7 g
22 g
51 g
Dietary Fiber
1 g
0 g
NA
3 g
3 g
7 g
Total Sugars
0 g
0 g
4 g
2 g
5 g
11 g
Protein
36 g
3 g
3 g
3 g
4 g
49 g
Calcium
46 mg
12 mg
30 mg
50 mg
9 mg
147 mg
Potassium
920 mg
48 mg
NA
331 mg
234 mg
1,533 mg
Total assumes NA = 0
So the full menu item name for the fish is Halibut with Mojo Butter Sauce, and the corn is White Corn with Jerk Butter. The butter part of the menu item probably accounts for the high total fat and saturated fat content.
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The food was mediocre. The fish was a bit dry and not too flavorful even though there’s quite a bit of sodium. I had to find a packet of soy sauce to make it taste better. I also didn’t eat much of the broccoli and corn so it was just fish, rice, and a dinner roll for lunch.
It’s 1:30 am and I’ve been trying to sleep since midnight. The burn in my feet from neuropathy is pretty intense tonight and hard to ignore when trying to sleep.
Another crazy idea I had recently was instead of living in a recreational vehicle (RV), I would buy a yacht, live on the boat, and travel the world. A long time ago I had a coworker that actually lived in Arizona but worked in Irvine. He would fly in Monday morning, get his car from the airport parking lot, and drive to work nearby. Instead of staying at a hotel or apartment, he would sleep in his 45 foot yacht at Balboa Marina for the next few nights, and return to Arizona Thursday evening. He took a few of us out on his boat down to Dana Point and back. It was pretty cool.
Nordhavn 52
I believe my coworker had a sports cruiser so it only had a two decks, was pretty fast, and had terrible range. We probably traveled about 30 miles total and used $300-400 of fuel. The yacht was probably fine to sleep in for a few nights a week, but you couldn’t travel far in it. What I had in mind was to live on the boat long-term, and visit exotic locations worldwide. For that, you need something that has a cruising range of thousands of miles, not hundreds. Since I’m not rich, I can’t afford a superyacht with a full-time crew. The other option available is buying a smaller expedition yacht. I mentioned before that I’ve been watching a lot of yacht videos on YouTube. One brand that stands out is Nordhavn. They make expedition yachts from 41 feet to 148 feet long that can cross oceans. You can get a fairly new 52 foot boat for about $1 million. It’s not cheap, but think of it as buying a house.
On YouTube, there are lots of videos of people making thousand mile trips in Nordhavn boats. They even organized a group trip across the Atlantic Ocean in 2004.
However, unlike buying a RV and driving across the country alone, I don’t think you can operate a expedition yacht by yourself. Each boat in the above video has a multi-person crew. In a RV, if something breaks down, you can always pull over and call for help. If your boat breaks down in the middle of the ocean, you’re on your own. I also think traveling by boat is a 24/7 job so you can’t take 10 hours out each night for dialysis. It’s doable in a RV but not in a boat with 25 foot waves. So if I really want to do this, it will have to wait until after a kidney transplant. Probably need to sell my house too in order to afford a decent boat. It will likely be very expensive to operate a boat, much like owning a private jet, but it would be cool to visit the South Pacific in your own yacht.
Right now, the numbness in my feet is pretty overwhelming. For some reason, the neuropathy has been very intense this weekend. During dialysis yesterday, there were several times that I felt like asking the nurse to disconnect me so I can get up and walk around. Still not sure how I sat through all four hours without another panic attack.
This afternoon we went to my sister’s house and played mahjong. That means I sat in one place for probably 5-6 hours. Maybe that has something to do with the numbness in my feet right now. It is unclear whether this is just the condition getting worse, or it’s a result of all the acupuncture I’m getting. I’ve told my acupuncturist that I have a bit more feeling at the bottom of my feet but at the same time, the numbness is also more intense. I don’t know if that is what she expects from all the acupuncture therapy.
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I just took a closer look at my lower legs and ankles; they’re pretty swollen. It’s probably due to sitting for a long time. Maybe the increased numbness is from the edema.
After getting emails from the rehab nurse and clearance from my vascular surgeon’s office, I felt like I should continue with cardiac rehab. I ended up going on Monday, Wednesday, and Friday. Since Monday was President’s Day, I only had to bring clothes to change for work on Wednesday and Friday. I would get there around 7:40 am and get done right before 9:00 am. I was still able to arrive at work before 10:00 am both days so the schedule is fine.
That means I’ve completed eight sessions out of the required 24. I still have a lot of appointments on Tuesday afternoons so it’s hard to go four days a week. However, I think I should be able to complete all 24 sessions by the end of March, in time for UCLA Transplant Center to clear me starting April.
The cardiac nurse asked me about my coworker on Monday. I think he showed up for orientation or first session. However, I heard his pacemaker is acting up, activating when it’s not needed. I think he stopped rehab until he has another surgery to fix the pacemaker sometime in early March so I haven’t seen him at rehab yet.
I just got a visit from the chaplain intern during my dialysis session. He seems to be a nice guy but very Korean. It was a bit difficult to understand him. He also said he was diagnosed with Parkinson’s Disease 11 years ago so maybe that affected his speech. I think he said he was with Korean Presbyterian Church and found it interesting that I went to a mostly Korean-American church but I’m not Korean.
He is walking around basically cold calling patients and talking to them. It was a nice 15 minute break but I only got ~80% of what he said. Since I’m at a non-profit Catholic hospital, I should be expecting more of these visits. I wonder if non-Christian patients will be as patient with him.
When you come in for dialysis, you are supposed to wait in the waiting room until they call you in. Each pod of 7-8 chairs only has one nurse and two technicians so sometimes the schedule can be a bit fluid. I’m supposed to start at 9:00 am and get hooked up by 9:15 am. They want you here 15 min early so sometimes I get called at 8:45 am, and other times not until 9:00 am or later. It all depends on the timing of getting other patients on and off the machines.
I always wait until they call me and there are usually other patients waiting too. However, I noticed that many patients just wander in whenever they arrive, or their caretaker/driver just pushes them into the clinic. Today, while I was waiting, two patients from my pod just wasn’t straight in without waiting to be called. It’s as if they’re too important to wait, and the staff needs to tend to them right away. The patient in the nice powered wheelchair got kicked out but the other person in a manual wheelchair was seated and connected.
I was called in around 9:00 am. The pod was super busy so I didn’t mind waiting. While the nurse was connecting me, several other patients came in without being specifically called in. Some were turned away, but those in a wheelchair just hung out and got in the way. My nurse was a bit flustered since she felt she needed to rush to get the other patients on the machine, which is not good for me. My catheter is a huge infection risk if they don’t clean enough between steps.
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A patient came in a second time without being called. They’re trying to get a patient off the machine to clear a spot so there’s nowhere to sit. Since he can walk, they kicked him out again to the waiting room. How hard is it to wait until you’re called? Do they also barge into busy restaurants as soon as they arrive and demand a seat? Go to the airport and demand a seat on the next flight without a reservation? Sheesh!
I mentioned this ministry before in another post about consecrated oil. Our pastor invited them to speak at our church and bring the miracle oil producing bible. They gave a revival message and prayed for healing. A couple of them prayed for me and rubbed some oil on my forehead. Nothing happened.
A story in the Chattanooga Times Free Press seems to indicate the oil was purchased from a company called Tractor Supply. They took some of the oil to a lab and the analysis indicates it has the same chemical composition as mineral oil from Tractor Supply. In response, the ministry said the oil stopped flowing back in early January and they cancelled all future revival meetings. There are several postings at the ministry’s website:
We recently posted notice that the oil from the Bible has paused flowing, and that as a result, the team was ceasing meetings on Tuesdays at the Wink and taking time to pray and seek God about future ministry.
Since the last meeting on February 11, the Times Free Press newspaper has published an article which calls into question the integrity of the miracle of flowing oil. It contains an allegation that Jerry Pearce whose Bible it is “often bought large amounts of mineral oil.” It also says that the newspaper had a vial of oil tested and that “the tests found Pearce’s oil is petroleum-derived and the results “strongly suggest that the oil sample is mineral oil.”
The conclusion the writer is inviting people to reach is that the oil that has been distributed over time is not of supernatural origin, but rather, is being supplied from the purchased oil. Jerry states that he has, in fact, bought mineral oil from Tractor Supply, but has at no time added it to the vials being distributed at meetings, or to the container holding the Bible. The purchase was made without the knowledge or approval of anyone else in the ministry and we are seeking the full truth of these accusations.
Jerry acknowledges that the credibility of the miracle is in question based on the information disclosed in the article. He has expressed remorse for having caused the integrity of the work of God to be questioned because of his action.
Well, this is a bit disappointing. All along I believe that faith in God is what is important. The oil itself, whether purchased from a store or produced supernaturally, has no power. When I received the small vial of oil at the revival meeting, I also wondered at the chemical composition of the oil. Was it olive oil? Mineral oil? WD40?
I don’t know the motivation behind the Flowing Oil people. Did they benefit financially from the ministry? I don’t know if our church paid them to come out to California from Georgia. Did oil actually flow from the bible? If so, why did they buy all that mineral oil? Did the ministry people believe that the oil had healing powers or was it all an act? What am I supposed to do with the vial of oil on my desk?
I ate lunch at work today. Usually I try to go out to for lunch on Fridays, either to a food truck on-site, or to a restaurant. Today, I had too many meetings so there was only time for the cafeteria. I got steak, rice, potatoes, dinner roll, and some peas. Here is the “official” nutritional info for lunch:
Item
Steak
Rice Pilaf
Potatoes
Dinner Roll
Peas
Total
Serving Size
198 g
113 g
113 g
51 g
113 g
588 g
Calories
390
200
120
130
140
980
Total Fat
20 g
9 g
3 g
2.5 g
8 g
42.5 g
Saturated Fat
8 g
0.5 g
0 g
0 g
5 g
13.5 g
Cholesterol
100 mg
0 mg
0 mg
0 mg
20 mg
120 mg
Sodium
550 mg
95 mg
95 mg
260 mg
140 mg
1,140 mg
Total Carbs
9 g
28 g
22 g
21 g
14 g
94 g
Dietary Fiber
3 g
0 g
2 g
NA
5 g
10 g
Total Sugars
4 g
0 g
2 g
0 g
5 g
11 g
Protein
40 g
3 g
3 g
6 g
5 g
57 g
Calcium
100 mg
14 mg
15 mg
26 mg
30 mg
185 mg
Potassium
630 mg
48 mg
601 mg
0 mg
233 mg
1,512 mg
Yummy lunch
First, it felt much heavier than 588 g so maybe the serving sizes were not accurate. The servers spoon the items from large serving trays so there must be a lot of variability. I also didn’t finished all the potatoes so only count ~50% of the numbers. Anyway, I’m surprised at how much sodium and potassium is in everything. Nothing tasted particularly salty but the meal contained >50% of recommended daily value for sodium. Likewise for potassium. Both beef and potatoes contain a lot of potassium. Also, lots of carbs in rice, potatoes, and bread. Each was ~10% of DV for total carbohydrates.
The patient next to me has a very nice powered wheelchair/scooter. He has his lower left leg amputated so he definitely needs something to get around. I don’t think he has a good support structure. His mom visits sometimes but I’ve only seen her twice in over two years.
The chair is an Avid Rehab Vector by a company called Merits. The list price before options is $7,000. Tricked out, it will probably cost >$12k. Top speed is 5 mph and has a range of 24 miles. I’m not sure how far the patient lives; he comes in a medical transport van each session. Most mobility challenged patients come in a simple manual wheelchair so maybe he needs it on off-dialysis days.
When there’s nothing good to eat at work, I used to get a burger and fries as a default option. Since coming back to work post-surgery, I’ve been more focused on nutrition. Here’s the nutrition info; not sure if it’s accurate though:
Nutrition Item
Burger
Fries
Total
Serving size
318 g
198 g
Calories
950
280
1230
Total Fat
63 g
8 g
71 g
Saturated Fat
26 g
2.5 g
28.5 g
Trans Fat
0 g
0 g
0 g
Cholesterol
205 mg
0 mg
205 mg
Sodium
970 mg
35 mg
1,005 mg
Total Carbs
52 g
44 g
96 g
Dietary Fiber
0 g
NA
NA
Total Sugars
9 g
0 g
9 g
Protein
44 g
2 g
46 g
Calcium
347 mg
0 mg
347 mg
Potassium
76 mg
NA
NA
Company food website
Wow, 28.5 mg of saturated fat. The daily value assuming a 2,000 calorie diet is only 20 mg. Also there was no info for potassium for the fries but potato usually has pretty high potassium content. I think it’s good to avoid the burger and fries combo or I’m going to start clogging my new heart.
Based on experience, I’m pretty sure the sodium number is too low. They sprinkle salt on the fries so there’s no way it’s only 35 mg. I’ve had soup from the cafeteria that were so salty that it burned my throat.
I called Medicare today with questions regarding coordination of benefits when I still have my work insurance. The person on the phone was really nice but the call took awhile since she had to look up a lot of info. I guess it’s not a common topic.
She confirmed that as long as I have my work insurance, Medicare will pay as secondary insurance, except for dialysis after 30 months, and the kidney transplant. I asked about previous claims where I paid a co-pay and was told that I can file a claim. However, if the provider charged more than the Medicare rate, and most do for private insurance, Medicare will calculate their responsibility with the lower rate. I’m still unclear what that means. If my doctors bills my insurance $200 and they paid $160 since my co-pay was $40, how much will Medicare reimburse me? If the Medicare rate is $100, will they pay up to $80 (80% of the initial claim at the lower rate), or pro-rate my co-pay and only reimburse me $20? We decided over the phone that I should just file the claim for $40 and see what happens. I also didn’t get any statements from my doctors so I’ll need to go back to all of them for more info in order to file the claims. Medicare does pay for cardiac rehab so that’s a lot of co-pay to get back for the entire program.
I also got the first statement from my dialysis clinic. The insurance amount was close to $30k. My work insurance only pays 85% but since I also have an out-of-pocket maximum each year, my portion comes out to ~$3,000. I’m thinking Medicare should pay that but their dialysis reimbursement rate is much lower, probably like $3,600. So will Medicare pay only 80% of that or $2,880? Also, if Medicare pays some of the bill, will my insurance count that when calculating my out-of-pocket maximum? Otherwise I’ve hit my max and my work insurance will pay 100% from now on. Super confusing.
I had an appointment this afternoon with the vascular surgeon that put in my fistula. It was for the two week post surgery follow-up. First the physician assistant removed some suture knots from the fistula incision and staples from my abdomen. There were three staples; I thought there was only one so it was a surprise that he kept pulling them out. The surgeon then came in and looked over the various incisions and was pretty satisfied. He was a bit concerned that there is a lump in my abdomen at one of the incision sites so I’m going back again in three weeks.
The whooshing sound is getting louder in my wrist. Everyone said it’s normal but it’s still freaky, especially at night when I sleep to my right side and my wrist ends up next to my ear. Also, if you put a finger on the incision, you can feel a pretty distinct buzzing as the blood flows through the vein right under the skin. Ugh, I wish I didn’t have to get this thing put in.
Lab results from the previous test are available online. Here is a three month history of my Renal Panel:
Test
Normal Range
12/12/2019
1/16/2020*
2/13/2020
Albumin
3.6 – 5.1
3.7 g/dL
4.3 g/dL
4.1 g/dL
Calcium
8.6 – 10.3
8 mg/dL
8.7 mg/dL
8.7 mg/dL
Potassium
3.5 – 5.3
4.6 mmol/L
4.8 mmol/L
5 mmol/L
Phosphorus
3.5 – 5.5
4.1 mg/dL
4.2 mg/dL
4.8 mg/dL
Urea Nitrogen (BUN)
7 – 25
34 mg/dL
33 mg/dL
45 mg/dL
Glucose
65 – 99
123 mg/dL
172 mg/dL
106 mg/dL
Creatinine
0.7 – 1.3
9.81 mg/dL
9.71 mg/dL
9.61 mg/dL
eGFR (non-African American)
> 60
5
6
6
Urea Reduction Ratio (URR)
> 65%
64.7%
65%
62.2%
*1/16/2020 results from Comprehensive Metabolic Panel
Since I was on peritoneal dialysis prior to December 2019, test results are probably not comparable. Most numbers are comparable month-to-month except for the URR. I mentioned previously that dialysis clearance was low this month. The nurse told my nephrologist today that the dialysis machine was alarming several times on 2/13/2020, which may affect the clearance test results. I think they are going to retest this Thursday so hopefully the number comes up.
Even on dialysis, my eGFR is 5-6. I think the best it’s been was 11 when they tested my blood in the ER on 12/14/2019. I think the results in the table above are from before dialysis so the number is two days after dialysis. The 11 number was right after ~3 hours of dialysis so maybe the number is 12-13 if I completed my 3.5 hours session. Dialysis is supposed to give you a GFR of ~15 so that’s pretty close.
My nephrologist dropped my dry weight for dialysis again. It’s now at 91.0 kg. I think I left dialysis yesterday at 90.8 kg and I’m already at 93.5 kg tonight. That’s 2.7 kg over and I have another whole day before dialysis. Since I’m wearing different clothing + shoes at weigh-in, I’m never sure what my starting weight is for dialysis. I blame all the protein shakes I’ve been sampling. I drank a bottle of the Muscle Milk I bought from Amazon, and a bottle of the Premier Protein I bought from Costco today. That’s 22 fluid oz or ~650 mL total, which adds 0.65 kg to my weight. Since we removed the PD catheter, I can’t use the leftover dextrose solution to cheat and remove fluid at home so I have to really control my fluid intake tomorrow.
I went with my mom for some grocery shopping at H Mart and Costco in Irvine. Since H Mart was located in Diamond Plaza and parking is always a mess, I ended up using my disabled placard and parked up front. I got the placard at the start of my heart surgery recovery when I could barely walk, even with a walker. My nephrologist filled out the DMV form and said I needed the placard until end of March. I’m probably back to 75% health so I don’t really need the placard so I feel a bit guilty using it.
After H Mart, we drove up the street and went to Costco at The District to buy some roasted chestnuts. Saturdays at Costco are no fun and I ended up using the placard again. I do get tired if I have to walk really far, and my mom still has post-surgery pain in her leg so maybe together we can justify using it. Anyway, next to the checkout area is an entire section with protein shakes and powder. I saw multiple flavors of Boost, Premier Protein, Muscle Milk, and others. Most of the flavors were either Vanilla or Chocolate but I saw that they were selling Premier Protein Peaches & Cream so I had to buy it. It was about $26 for 18 shakes or ~$1.50 each.
Brand
Nepro
Ensure High Protein
Premier Protein
Flavor
Mixed Berry
Vanilla
Peaches & Cream
Serving Size
8 oz
8 oz
11 oz
Calories
425
160
160
Total Fat
22.7 g
2 g
3 g
Sat. Fat
2.0 g
0.5 g
0.5 g
Cholesterol
6.5 mg
20 mg
20 mg
Sodium
250 mg
210 mg
230 mg
Total Carbs
37.9 g
19 g
3 g
Protein
19.1 g
16 g
30 g
Calcium
250 mg
40% (520 mg)
650 mg (50%)
Potassium
250 mg
10% (450 mg)
280 mg (6%)
Phosphorus
170 mg
25% (310 mg)
620 mg (50%)
Conversion from DV% to mg for Ensure High Protein using implied DV from Premier Protein
The Premier Protein shakes is pretty similar to other general protein shakes. Since Nepro was designed especially for dialysis patients, it has higher calories/fat/carbs, and lower potassium/phosphorus. I think they are expecting patients to drink it as a meal replacement instead of a supplement to regular meals. The peach flavor was pretty good, definitely better than the Nepro mixed berry. I’m going to try adding some ice and blend it into a smoothie.
Too bad Costco doesn’t sell Nepro. That stuff is expensive.
Chinese people believe in “sitting the month” or postpartum confinement. The thought is that after the trauma of pregnancy, if you get sick, then the effect of the illness will stay with you for the rest of your life. Post-heart surgery, I feel like a bunch of things about my body has changed too. Most noticeable is weight loss. I lost a lot of weight after surgery and more than three months later, I’m still down ~30 lbs. I know my peripheral neuropathy is a lot worse than before, and I never started peeing that much after the surgery. Finally, even though I feel cold most of the time, I’m sweating a lot at night when I sleep.
Before, I thought the space heater in my bedroom was turned too high so I put a wifi switch on the plug and have been turning it off before sleeping. It definitely feels cold in the room when I have to get up in the middle of the night. Before surgery, I would use a thin blanket plus an old comforter to sleep comfortably. Now, with just the comforter and the heater off, I wake up constantly covered in sweat. I’m not even wearing pajamas, just a thin t-shirt and underwear. If I don’t sleep under the comforter, than it’s way too cold. I’m at a loss at what to do. Turn up the heat and use a thinner blanket? Open the window a bit so the room gets even colder?
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Last night’s sleep was dismal. I was tired after dialysis and walking so I took some naps, from 3:45 pm to 5:00 pm and from 9:00 pm to 10:00 pm. Then I could not sleep until 5:45 am and woke up at 7:45 am all sweaty. I can’t remember what I did for almost eight hours but it was a lot of YouTube and Nintendo Switch. That’s only two hours of sleep for today so I’ll need to find some time for another nap. Not good.
It’s been a long time since I went out to walk. For awhile it was because I was at cardiac rehab. Then I had the outpatient surgery and needed the hole in my stomach to heal. I felt okay today after dialysis so I grabbed my dad and we did a small loop around the park. The park was pretty crowded since the weather was nice and it’s a Saturday. We walked 0.93 miles at a pace of 29’17”. I think my dad thought I was getting winded so he kept telling me to slow down. I also need to get a bit of exercise in while I can since I’m restarting cardiac rehab this coming Monday. UCLA Transplant Center still expects me to finish mid-March so they can clear me for kidney transplant in April. My friend/donor is currently grounded from traveling to China due to the coronavirus so we want to complete the transplant and recovery before he needs to travel again.
The dialysis nutritionist came by to tell me my labs were good, but the Kt/V numbest was inadequate. It was 1.16 this time; the minimum value is 1.20. Last time they increased my dialysis time by 15 minutes. They are going to redo the test but I’m probably looking at four hour sessions until my fistula matures. Like I said before, just when you think you life can’t get any worse, another negative surprise is just around the corner.
Crap! There were five claims (so far) that my work health insurance screwed up. When I called them, I thought there was only one but after going through all the claim activity online, there were four more where my work plan paid as if they were the secondary insurance. I sent them a secure message on their platform with all five claim statements. I hope they review and repay in a timely manner so I don’t have to answer all sorts of calls from my doctors. Sigh…
I still have to call Medicare to figure out what to do with all my co-pays. I figure I must have paid >$350 in co-pays excluding acupuncture and therapy. Not sure if those two things are covered. I called Medicare once before and they were pretty helpful so maybe this won’t hurt too much.
The magic pill worked again. The pill I took at 1:00 am lasted until morning and I slept for a combined 9+ hours last night. The pain was mostly gone this morning so I didn’t take anymore pills. It’s about 5:00 pm now and there is no pain, even after eating a large bowl of hot Vietnamese noodles for lunch. I guess my gums were super irritated during the dental appointment but no lasting damage afterwards.
Lunch. Probably too much sodium and too much soup but it was good!
Life with chronic diseases 