Holy Fire Baptism

This is happening all week at my church. The first time I heard of this was an email from church Tuesday. By then, all the baptism “spots” were filled; I probably missed the original announcement during service at church. Here is more information about the revival from their website.

In January 2018, Christ Fellowship Church of Dawsonville, GA entered into a 21-day corporate fast to seek the LORD. On February 11th, the Holy Spirit suddenly made His presence known in the service. Since that moment, nothing has been the same. Testimonies of miracles, physical and emotional healing, salvations, and life-changing breakthrough of renewed faith and joy are being reported. People testify of encountering impartation upon entering the building, while in corporate prayer, while in their seat, by receiving prayer with the altar team, or by immersion in water in one of the baptism pools.
Christ Fellowship website

I know God works miracles in many ways: sometimes through revivals, sometimes through prayer, and sometimes when we don’t even do anything. However, it’s hard not to feel left out of this particular revival since so much focus is on water baptism. In the preparation instructions, between all the bullet points regarding baptism, there is this note: “those with wounds, incisions, physical and/or medical restrictions will receive prayer ministry from the pool rather than in the pool.” Great! I won’t have to get my catheter wet and risk an infection. But is it the same? Why have all the setup and spectacle of water baptism if prayer or just walking in the building is okay too?

Maybe I just don’t understand revivals. It all seems kinda like a carnival. It’s like Christians needs to be entertained before they’re excited about God. What about quiet meditation? Is that just for Buddhist monks?

Interestingly, the last revival meeting we had at church was a ministry from Dalton, GA, which is only ~50 miles from Dawsonville, GA. Is there something special about northern Georgia or are revival meeting common over there?

Eating Out and Nutrition Tracking

My parents and I were planning to eat dinner at Souplantation last night. I’ve been trying to track my food intake with both Fitbit and MyFitnessPal apps on my phone. Since Souplantation has extensive nutritional information on their menu online, it’s easy to track. However, my dad ended up eating too much junk food in the afternoon so only my mom and I went to dinner in the end. Instead of Souplantation, we ate at a Japanese izakaya next door.

*Bentos! We even made it in time for Happy Hour.*

We ended up sitting at the sushi bar since there were no more tables, but neither one of us ate raw fish. It was weird sitting right in front of the sushi chefs and not ordering anything from them. My mom got a chicken teriyaki bento 照り焼きチキン, and I got some hot soba with shrimp tempura 天麩羅蕎麦 plus some fried tofu 揚げ出し豆腐. The food was pretty good; my mom wants to go back to eat already. However, there’s no nutritional information on their menu so I have to guess at my food intake. The soba didn’t taste that salty but I’m sure there’s quite a bit of sodium in the broth. Likewise, how much fat and phosphorus is there in the fried tofu? Do people who need to track their food intake closely just not eat out at small restaurants?

My friend and I are planning to meet for lunch today near my work. Usually we go to a hole-in-the-wall Vietnamese place. Obviously, they don’t post any nutritional information anywhere. I usually get their pho or egg noodles. The only nutritional information is salty.

*Not the prettiest storefront but the food is really good*

Sleep Confusion

Since I am going to work again today, I thought I would go to sleep early last night. I finally fell asleep around 11:00 pm but I’m up again at 2:00 am. Worse, I had no idea what time it was when I woke up. I forgot that my mom and I went out for dinner yesterday, and I thought it was dinnertime again. Only when I saw the actual time on my phone did I realize what time it was.

I was hoping my insomnia would get better once I started working. I thought maybe getting back into the work routine would help but I’m still only getting about three hours of sleep. This is better than when I was on PD; I was always super tired and sleeping all the time. However, I doubt three hours per night is sufficient long-term.

Dialysis Bag

When I started hemodialysis about 30 months ago, I noticed people bringing in lots of stuff: blankets, pillows, food, electronics, etc. Most people would have a bag to carry all their stuff. For the longest time, I resisted bringing a bag. Instead, I just carried everything by hand. Only on rare occasions would I bring my work backpack; that was usually when I needed to bring my work computer. I guess using a bag gives me a feeling of permanence, which I definitely did not want. After all, I was only on dialysis on a “temporary” basis while we figure out a living donor kidney transplant. Of course, that didn’t happen.

After returning to hemodialysis post-surgery, I was initially in a wheelchair because I did not have the strength to walk in on my own. Also since I sat at home all day, I was getting pressure sores on my butt and needed to bring in additional cushions. My mom gave me a huge bag to carry a seat cushion, a neck cushion, and a smaller bag with all my electronics (cell phones, iPad, headphones). I stopped using the huge bag when I didn’t need the additional seat cushion anymore. By then, my dad found a small messenger bag for all the other stuff I was bringing to dialysis. That bag was a bit too small, and he also wrote his Chinese name on it using permanent marker.

I finally went out and bought another messenger bag. I found some clearance items at Timbuk2‘s website and bought a “small” sized classic messenger bag. I wanted to get the extra small one but decided last second that I may want to put my old 13″ MacBook Air computer in the bag. It was ~$70 after tax. The bag is quite nice and feels quality-made. I’m still keeping my backpack for work since it has a lot more compartments but I can use the new back for dialysis, cardiac rehab, or day trips. At this point, I’ve accepted the possibility that I may be on dialysis forever, or until I die, so carrying a bag in doesn’t bother me anymore.

Dialysis Blood Pressure 2/6/2020

I’m still writing down blood pressure readings during dialysis, trying to figure out the pattern and how to minimize the fluctuation. Here are some readings from today:

Time	Systolic	Diastolic	Pulse	Notes
8:50 am	127	73	65	Standing
8:55 am	137	78	63	Sitting/legs up
9:07 am	148	83	63	Sitting/legs up
9:38 am	131	77	63	Sitting/legs up
11:08 am	178	88	65	Sitting/legs up
11:38 am	156	88	65	Sitting/legs down
12:45 pm	171			Sitting/legs down
1:00 pm	131			Standing

I can’t remember what I was doing between 9:30 am and 11:00 am but I missed several readings. My nephrologist agrees that likely the Metoprolol is being dialyzed out of my bloodstream during dialysis but she doesn’t want to prescribe more drugs yet. She did say the both the Metoprolol (beta blocker) and Olmesartan (ARB) are good for heart disease patients. NIFEdipine, even though it works great on me, doesn’t have any heart protection properties.

I handed a copy of my Medicare card to the front counter person. She said she will give it to my dialysis social worker. I hope they know how to coordinate billing since Medicare is supposed to pick up whatever my insurance does not pay. That is probably ~$3,000 since I am responsible for 85% of dialysis costs until I hit my out-of-pocket max. I still don’t know if Medicare covers my work insurance co-pays because I paid $280 already just for acupuncture co-pays.

Acupuncture Costs

One of life’s greatest mysteries is healthcare pricing in the US. You have a list price that patients are supposedly charged if they do not have insurance, you have an insurance negotiated price, then there is the co-pay that the patient is responsible for. I tried looking at my dialysis and emergency room statements and I can’t figure them out. BTW, I have a MBA degree in Finance.

For acupuncture, the provider’s website says they charge $90 for the first visit (consultation), then $60 for subsequent visits. It doesn’t say whether that’s for acupuncture or chiropractor so I assume it’s both. My co-pay for each session is $40, so I thought my insurance is paid $50 for the first session, then $20 for subsequent visits. Nope.

*Insurance statement for second acupuncture session*

For the first visit, the provider billed $290, which has an insurance price of $125. Out of that amount, my insurance paid $85 and I paid $40. For subsequent visits, they billed $180, which became $75. My insurance paid $35 and I still paid $40. Why aren’t they billing $90 and $60 per their website? My insurance will only pay for 30 sessions. Does that mean they make less money if they bill me directly without insurance?

Surgical Mask Shortage

I read a several news articles this morning mentioning a shortage of surgical masks, especially in China and Asia due to the coronavirus outbreak. I’m not sure of the supply chain in the US but we seem to have lots of masks here at the dialysis clinic. Since I’m still using a chest catheter, each time a nurse connects or disconnects me from the dialysis machine, I have to wear a mask, as well as anyone else nearby. Since they’re supposed to be disposable, we go through a lot of masks.

When I was on PD, I was also supposed to wear a mask when connecting and disconnecting myself to/from anything. I usually don’t bother so I have a stash of leftover surgical masks. I feel kinda guilty for being a mask hog. Even though they’re not that useful in blocking out viruses, I’m sure they’re better than nothing and people can really use the few boxes I have a home.

This reminds me of 1994. I was working as a summer intern at an intravenous solution manufacturer. At the time, there was a cholera crisis at Rwandan refugee camps in Zaire. Lots of people were dying of dehydration and the camps really needed IV saline solution. We had tons of inventory in the factory, so much so that we were storing it in hallways and truck trailers in the parking lot. we weren’t building inventory for refugees but for lack of freight transportation, hundreds of people were dying. It kinda feels like that now with the mask shortage.

RV Videos

When I was on peritoneal dialysis, I was watching a lot of other types of travel videos. Specifically, I watched videos introducing various recreational vehicles. I was mainly interested in a Class B van so it would be easy to drive everywhere. The thought was that I could retire from work, buy a RV, then travel across US and Canada while living out of the RV. Since I was doing peritoneal dialysis, I could install a PD cycler in the RV, as long as I had enough batteries or shore power to run it all night. I could have the dialysate solution delivered to different places across the country, or come home monthly to pick it up.

I was looking for these specifics features:

Separate shower instead of a wet bath
Solar panels and extra batteries to power the PD cycler overnight
Fits into a “regular” parking spot
Have additional seats in the back with seat belts
Preferably no slide-outs

A lot of Class B campers have wet baths, which reminds me too much of bathrooms in China. So something like this:

Or this:

I’m still not 100% sure why I was thinking of doing this. We never traveled by RV growing up, and most of the places I want to visit are overseas. Traveling by RV is more suited to visiting national parks and campsites; I’m more of an urban traveler, visiting large cities and cultural sites. I think it was the possibility of traveling with the PD cycler so you’re not tied down to one place for dialysis, and not having to carry the machine on airplanes and arranging delivery of dialysate solution.

Well, all that’s is impossible now that I’ve removed the PD catheter since peritoneal dialysis is not an option for me. Home hemodialysis really requires you have a helper in case you screw up and start bleeding out. I doubt it’s possible to do home hemodialysis out of a RV. I could always do RV travel if I get a kidney transplant, but then I would travel by airplane instead of driving a van everywhere.

I also watch a lot of super-yacht and private jet videos but those are definitely out of my budget.

More YouTube Travel/Food Videos

At work today, a coworker asked me what I did all day when I was basically bedridden. I told her I watched a lot of YouTube Travel and Food Videos. Then she asked, “Did you see videos by Mark Wiens?” I guess he’s pretty famous as someone else from my church small group asked me the exact same question. They also made fun of his “I love this” facial reaction.

The other channel I watched a lot is from Mike Chen. I think his claim to fame is how much he eats at AYCE (All You Can Eat) places, especially Chinese Hot Pot and Korean BBQ. I like Mark’s videos a bit more but they’re both pretty good. I guess it’s a pretty good life if your job is traveling and eating. Here is a video that features both of them together eating noodles in Thailand:

I visited Thailand on a “vision” trip back in 2005. It was basically a trip with my church at the time, and the goal was to see if I wanted to move there for one-year as a missionary. We visited major tourist areas like Bangkok and Phuket, but also less well known places like Udon Thani and Koi Yao Yai. I enjoyed the trip but Thailand was too hot and humid, and the food was too spicy for me.

*Beach next to Loh Yak Pier on Koi Yao Yai*

I also visited Taiwan for a few days after Thailand. I remember calling my ex-wife at home from right outside of Sun Yat-sen Memorial Hall in Taipei. It was raining a little bit at the time. This was when she dropped the bomb over the phone, and asked for a divorce from about 7,000 miles away. That’s a story for another time/post.

First Day of Work

I’m at work right now… blogging. So today was my first day back to work. It’s weird because it feels like I’ve been gone forever, but everything is still the same. I met with my new staff and old teammates to get caught up. While I was gone, my work email account went over quota so I could not send any emails. It took me several hours to go through three months of unread emails and delete enough stuff so I’m under quota again. Security also did not turn on my badge so I could not get in the building initially. Unlike last time, a quick phone call to HR to confirm my leave status and I was back to normal.

*We have something similar at all our building entrances*

Physically I felt fine. The drive was not too bad and none of the surgery sites hurt too much. Since I have dialysis tomorrow, I have to take a day off and continue work tasks Friday. I’m probably eating and drinking more since there are several cafeterias and free fountain drinks at work so getting food is very convenient. Got to be careful not to gain back all the weight I lost during recovery.

First thing I have to do is put my dialysis times on my calendar so no one tries to schedule a meeting during those times.

Another EDD Check

I got another disability check from the EDD today. It’s payment for 1/14/2020 through 1/27/2020. My cardiologist had told them that I would be out on disability until 2/14/2020 but I’m actually ending my leave on 1/30/2020. I believe it’s a big no no to get state disability pay if you are getting paid from your employer. I went online and filled out a DE2587 (Recovery or Return to Work Certification) form so hopefully they will process the form and just pay me for a few more days instead of two more weeks.

Crap! I just noticed it said to mail in the form. Of course it does not provide an address. Why would they want me to mail a form that was generated online? Is this the best technology the state of California can come up with? I’m glad that I was able to get some disability payments while I was on medical leave but the less I have to deal with the EDD, the better.

Also, I completed the form on my iPad and could not figure out how to save the PDF. The above is a snip of a screenshot from the iPad. In my attempt to save or export the PDF, the message this from came from was deleted. Of course there is no other way to get to the form other than the Inbox message. At least I got a screenshot.

Medicare Card

I got my Medicare card in the mail. I already have my Medicare number from a different letter but having the card seems more legit. I also got a notice of Medicare Part B premiums. I thought based on my last tax return, my premium would be $433.40/month. I guess I had the wrong lookup chart. The letter says my premium will be $318.10/month, which is $115.30/month less. That’s a lot of breakfast burritos.

What’s weird is I looked up the Medicare website and they also have a different rate table than my original post and the letter I received.

*Medicare Part B premiums from medicare.gov website*

Here it looks like my premium will be $462.70/month. However, the letter had these set of numbers:

At first I thought the premiums table at the website was adding Part B and Part D premiums but the math doesn’t work out either. With the cost of dialysis so high, I’ll pay whatever they bill me. Again, I don’t know who pays for the kidney transplant if it happens this summer. Also, I don’t have Medicare Part D. Does Medicare still cover post-transplant medication?

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Also this is post #350!

Sudden Leg Pain and Numbness (updated)

Sitting in dialysis today, my left leg suddenly started hurting. To lessen pressure on my lower back, I usually sit upright in the dialysis chair. Most patients either have their legs up or sit fully reclined since that raises their blood pressure and lessens the chance of falling out of the chair. When I raised my legs near the end of the session, there was a shooting pain from the left heel up to the back of the knee. Since I get nerve pain occasionally from peripheral neurophy, it wasn’t anything to worry about at the time. The pain subsided a bit until I tried to get up and walk. Then the pain came back. Unlike my normal nerve pain that comes intermittently, this was pretty constant. However, I was able to limp along and it seemed to get better the more I walked.

Fast forward until now. The pain was present most of the day but worse when I straighten out my leg. I had two medical appointments this afternoon and when I got home, I tried to take a nap. I then noticed that the numbness in both legs is a lot worse. Since I have so many medical issues, I don’t know if this is from acupuncture, side effect of medication, more neuropathy, or deep vein thrombosis (DVT); the surface vein in my left leg was removed for heart bypass surgery.

Worse, my dad needed to go to the ER right about now. He hasn’t been able to urinate all day even though he feels like he needs to go. I volunteered to drive them to the ER but my mom won’t let me due to my leg pain. My sister was out of the house so they took an Uber to the ER. Wait… if I can’t drive to the ER, shouldn’t I go to the ER and have my leg checked out? If the pain numbness and pain doesn’t subside soon, I may need to go to the ER.

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It’s been about four hours since I posted the above and the pain in my leg is mostly gone. The more intense numbness is still there but that seemed to be the trend lately anyway. I took some regular Tylenol too so hopefully it’s not just the drugs masking the pain.

My dad is back from the ER. They had to insert a foley catheter to relieve the pressure. It was likely an enlarged prostate causing the issue.

What is Dialysis?

I use terms like hemodialysis and peritoneal dialysis often but most people probably don’t know what that means. I sure didn’t know anything about three years ago. I found some nice pictures online.

I go to the St. Joseph Hospital Renal Center three times a week for hemodialysis. It’s a non-profit dialysis center. Most patients are at a for-profit center like DaVita or Fresenius. Currently I have a catheter in my chest, my second one. I just had surgery to put in a fistula in my right arm above the wrist. When that matures and works, I’ll need to have the catheter removed, again.

For six months I switched to peritoneal dialysis which required a different catheter. That was put in during April last year. Basically you put a dextrose solution in your abdominal cavity and let osmosis remove toxins and excess fluid by passing them through your abdominal wall membrane. The used solution is then drained and disposed. This fluid exchange can be done manually 4-6 times a day, taking about an hour each time.

*Baxter home peritoneal dialysis machine*

For me, instead of using manual exchanges, I has a machine that basically pumps fluid in and out of my abdomen overnight so I can work during the day with minimal interruptions. I would attach three bags of dextrose solution totaling 15 liters and the machine would cycle the fluid five times in and out of my abdomen. I also had to do a manual exchange around noon each day for extra dialysis. It turned out that my peritoneal membrane wasn’t suited for dialysis so I had to stop and go back to hemodialysis during the same time as my heart bypass surgery.

Also available is home hemodialysis. Basically it’s a different machine that allows you to do dialysis at home. If my living donor kidney transplants don’t work out, that may be an option for me later.

Patient Lift

We have a patient lift at the dialysis clinic. It’s new and quite fancy. It will weigh the patient while lifting them out of the wheelchair. There was an old one previously but they replaced it recently. The patient basically sit in a big canvas or cloth bag and the device lifts them from their wheelchair to the dialysis chair and vice versa.

Unfortunately, it gets a lot of use here. There are lots of wheelchair-bound patients who can’t transfer themselves to the dialysis chair. It just makes this place all the more depressing.

Fistula Surgery Incision Not Healing

My right arm is quite sore. I just changed the dressing again an hour ago and there was only a little bit of blood on the bandage. The incision appears to have stopped bleeding but looks pretty ugly. You can still see sutures and the cut has not completely closed up. There are plenty of sensitive spots along the incision as well. I just took some Tylenol but was tempted to break into my stash of Tylenol-Codeine. I tried to wipe some of the dried blood away with alcohol pads but the pressure was somewhat painful and I was afraid of causing the incision to bleed again.

The two surgical sites on my abdomen are doing better. The catheter exit site is still bleeding a bit; each time I change the bandage, there is some blood on it. The other incision has some sutures and was a bit swollen and bulging out before, though it looks better now. I guess it’s good that I’m seeing the surgeon tomorrow; I don’t remember this many issues when the PD catheter was put in.

I’m using Telfa 2132 non-adhesive dressing and 3M 2″ Micropore Tape to cover the surgery site on my right arm. I used cotton gauze before and it felt like it was going to stick to the opening. It’s also quite a challenge trying to apply the dressing using only my left hand.

New Career: Tour Guide

After I had my emergency heart bypass surgery, I was discussing the future with someone from my church small group. His comment was that my previous life was over and I need to think about how to live my second life. For now, I’m going to go back to work but really think about what to do with the rest of my life. 25 years in finance is a long time.

One idea is to find a job closer to home, but several levels below my current position. I’ve been in a director level position for the past 8+ years, which means managing staff that manages other employees. A lot of my time is spent mentoring instead of getting tasks done. Maybe I can take an analyst position nearby and take it easy, but for a lot less pay.

Another idea is to find another career in an entirely different field. I really enjoy putting trips together. On our 2015 family trip to Japan and Taiwan, I spent about three months researching and organizing a detailed itinerary that even included train schedules and restaurant listings. I managed to get it down to two pages and we carried it with us all trip. However, usually when you start a new career at the bottom, you have to work really hard. I don’t mind working hard but I don’t really have a career goal at this point. Also, how do you start with no experience? Do I need to take classes in school again?

I looked at tour operator sites like Abercrombie & Kent and it seems like there are pretty healthy profit margins. Closer to home, I found this tour at Kensington Tours that charges ~$5k/person for six days in Southern California. Assuming they will operate the tour with just two guests, that’s a budget of ~$10k. Let’s break down the itinerary:

Accommodations at Chamberlain West Hollywood: about $400/night for Deluxe suite
Accommodations at Hotel Indigo: about $265/night for King Skyline View room
Day 1: pick up guests at airport
Day 2: 4 hour tour of Los Angeles: the only place that looks like it needs tickets is La Brea Tar Pits ($22/person); not sure if lunch at The Ivy is included; parking at Griffith Observatory is ~$10/hour
Day 3: 9.5 hour trip to Santa Barbara: visits to a bunch of public places so if there are tickets and parking, it’s probably not too expensive; again, not sure if lunch is included; winery tours are probably free; private wine tasting seems to be $35/person
Day 4: 6 hour drive down to San Diego: all the stops in LA are public locations and free
Day 5: 4 hour tour of San Diego: only place that costs money is visiting the USS Midway Museum ($26/person)
Day 6: drop off at airport

If we pay the tour guide $30/hour and we include 10 hours/day, then it’s ~$2k for labor. Accommodations for five nights is ~$2k, and everything else is probably <$1k (transportation, parking, admissions, maybe food). That leaves ~$5k of profit for only two guests (50% margins!). If you have two more guests, just rent a minivan and get another hotel room. The profit margin is even higher with more guests. Of course there are risks, such as sitting around having no customers, but it sure beats working fast food. Maybe even better than working as a finance director.

Vascular Surgeon Follow-Up

The surgical site on my right arm for the fistula was still bleeding this morning. I removed the bandage from last night and it was soaked with blood again, and the surgical tape had a congealed layer of blood under it. There were two places in the incision that was still oozing blood. I replaced the bandage with a non-adhesive dressing and taped it down. That was this morning. I just replaced the bandage again. There was still some blood but it’s much less, though it’s only been about four hours. It does look like the bleeding has stopped.

I called the vascular surgeon’s office to make a follow-up appointment. Initially the appointment was set for two weeks from now but I also explained that I’m still bleeding. Later, the office called me back and said the surgeon wanted to see me tomorrow. I hope this is routine and nothing serious.

San Francisco Trip (updated)

After almost three years of dialysis, I think I’m ready to take my first trip. I wrote several blog posts about it and spent all yesterday morning researching hotels. I’m going to ask my parents to see if they want to go, then book the trip for February 29th to March 2nd. I can still get $139 first class tickets on Alaska/SkyWest so $834 for plane tickets.

For hotels, it appears that Hilton does not charge a resort fee at their hotels near Union Square. I can get a room with two double beds for ~$180/night including tax at Parc 55. Last time the three of us were in San Francisco, we drove up from LA and it rained the entire time. My main goal this trip is eating dim sum so maybe the weather won’t matter that much.

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Ugh, there are only two first class tickets available for $139 on the flight from SNA to SFO. I probably need to get both seats for my parents and I’ll sit in economy. It’s only 1.5 hour flight.

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I just read this on Reddit. I didn’t know it was even a concern to fly with a chest tunneled catheter. There is a clamp over each tube so it shouldn’t leak blood out of the actual catheter. Maybe the OP is talking about the opening in the chest. Mine was bleeding until about 2-3 weeks ago so I think it’s good. There’s also a BIOPATCH disc on the opening and a large clear bandage covering the entire area.

I’ll probably need to check with my nephrologist before making any reservations. I don’t want any TSA employees thinking that I’m carrying a SIIED or something.

Can I fly with tunneled cath?
byu/skrattadude indialysis

No Sleep 2/3/2020

It’s 4:13 am Monday morning and I haven’t slept at all. I went to be around 11:30 pm and basically watched YouTube for five hours. I would try to sleep between videos to no avail.

My right arm was wrapped up pretty tightly with a compression bandage all afternoon and evening. Around 7:00 pm it appears the bleeding has stopped. There is still a compression bandage on the incision site but not as tight. However, there’s pain in both my arm and my abdominal surgery sites. I did get the prescription for Tylenol + Codeine but I’m still just taking regular Tylenol. In addition, my mom has a prescription for Hydrocodone and my dentist gave me a prescription for Vicodin. I also have some leftover Percoset from my heart bypass surgery. That’s a lot of opioid painkillers I’m trying to avoid taking.

Anyway, the post surgery pain and more intense neuropathy in my feet is making sleep very difficult. I’ve already decided not to return to work today (Monday) since I’m still bleeding from a few surgery sites. I’m not going to cardiac rehab either so I have nothing scheduled other than a phone call with my insurance patient advocate.. Maybe it will be a day of naps..