Today, the needles went into my arm very smoothly. The tech got both needles in on the first try so it only took about 2 minutes from start to finish. My arm also didn’t hurt that much during the session. However, I think the venous needle caused a small bruise, but it’s mostly gone now. My arm is getting pretty scarred.
The arm is getting pretty lumpy too as the vein is getting bigger. You can feel an hear the blood rushing through the blood vessel in my lower arm.
I’m still waiting for a call from the vascular surgeon. I think they may want to do an ultrasound to see what’s up with the fistula and why sometimes it’s difficult to get the needles in right. Until then, the chest catheter stays. Here’s a photo of the last one they removed about an year ago. Catheter is on the left; it runs from the right side of my chest across to the heart through one of the large blood vessels (vena cava?).
At this point, it feels like I’m padding my post count but this is post #600. I started writing this blog on June 23rd, 2019, so it’s been a bit over one year.
Since I didn’t really share the link to this blog, there’s probably only two or three readers. Seems like a lot of work to post ~twice a day (on average) but it’s therapeutic to vent semi-anonymously on the Internet.
There are these huge biohazard bins at the dialysis center that gets replaced every so often. I think the waste deposited in the bins are incinerated; not sure if it’s done at the hospital or offsite. There is a lot of hazardous waste since almost everything in the clinic is contaminated by patients’ blood. For me, it’s double the waste since I’m using both access points: catheter and fistula.
For the catheter, first they have to pull the leftover anti-coagulant, in my case it’s argatroban, which uses two locking syringes. These get filled with blood and tossed.
When the fistula is used, the needles are also disposed in the blue bins after dialysis. On Tuesday, the tech had issues inserting the needles in my arm and had to used up four needles instead of two. There’s also the small syringes used to inject lidocaine. Finally, all the tubing and dialysis filters go into a bigger red bin for disposal. There is a crazy amount of waste with dialysis. This was also true when I was on peritoneal dialysis at home.
As of last night, we were up to 80 infected employees at my work site. Sigh… I was planning to go into work this Sunday to pick up some stuff, but mainly to dump old personal documents into our shredder bins. I’m shredding a lot of paperwork, but it’s tedious with a 8-page personal shredder.
This means 8 employees were infected over the weekend and another 5 this week so far. I’m pretty sure it’s mostly from activities outside of work but how much of a risk am I taking to go into work for a few hours? I really want to “borrow” my 30″ LCD monitor but I’m not sure where I can put it. My desks in the home office are full of computers and monitors already. Maybe I can put in a Helpdesk ticket and ask someone in IT.
To continue the transplant donor process, my sister needed to send in the image CD she received from her CT scan. Wanting to keep a copy in case the original was misplaced, she asked me to burn a copy. CD-R’s were super popular a decade ago but today, not so much. If you wanted to store a lot of data offline, a DVD-R holds 4.7 GB vs. about 700 MB for a CD-R. For music, hardly anyone buys CD’s anymore; most music is from a streaming service like Spotify or Apple Music.
I have a few of these 100 pack spindles at home
I only had about 5 blank CD-R’s left from before but was able to make a copy of the image CD easily. There is a tool called Ashampoo Burning Studio that’s free and easy to use. Many years ago, when hard drive capacity was in the 1 GB range, I burned a lot of my video downloads to DVD-R to free up hard drive space. Now that I have a 6 TB drive on a network-attached storage (NAS) device, I’m copying files back from DVD’s back to the server for faster access. Maybe it’s all going on the cloud next.
I had an in-office appointment with the doctor that performed my cardiac ablation procedure back in early June. To get to the office, I had to answer questions about symptoms with one person, then get temperature screened by another person, and line up for the elevator since it only takes four people at a time. It was like visiting a maximum security facility or something. This COVID=19 pandemic has drastically changed our lives.
The nurse did an EKG measurement and the doctor said everything was normal, except that my pulse is a bit slow. When I went in last time, it was at 120-130; now it’s in the low 50’s. He also stopped the anti-arrhythmia medication I was taking so one less pill. Yay!
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Here is my year-to-date resting heart rate as recorded by my Fitbit.
YTD Resting Heart rate
It started in the 60’s after heart surgery but slowed to the mid-50’s when I started taking Terbinafine, which can react with Metoprolol and cause a slower heart rate. The increase in April was from the initial a-fib, which was not fixed by cardioversion. The huge spike in May was the a-fib re-occurrence and waiting for the cardiac ablation procedure on June 5th. It has steadily dropped since then to the low 50’s. Here is this weeks heart rate readings; the gaps are when I was charging the Fitbit.
I just bought a $400 document scanner from Amazon and I’m in the process of scanning years of paper receipts, statements, and whatever into PDF documents. Hopefully I can remove some of the clutter on my desks.
In going through the many piles of paper, I found some old travel receipts, including stuff from a trip to Singapore/Hong Kong/Taipei during the summer of 2005. Fifteen years ago! I was taking vacation to go to Hong Kong and Taipei with then ex-wife and family so my boss at work said to stop by the Singapore office and they company will pay for my business class flight. It was my first long-distance business class flight and it was awesome. Originally I booked the flight on Singapore Airlines but our corporate travel office screwed up payment and my flights were cancelled a week before departure. I scrambled and managed to get Transpacific flights with EVA Air and Cathay Pacific which were pretty nice as well.
This was when I was still married and it was our last big trip. Later that year, my ex-wife filed for divorce and it was finalized during the summer of 2006. I hate finding things from the past since I always look at the date and wish I was still back at that time and wondering what if. This was when there was no hint of kidney disease and just the beginning of diabetes so I could have done a lot to save myself from the situation I’m in now. Or not since I was a lazy idiot and would have done exactly the same.
I’m gong to shred all this old stuff and not even scan it!
My experience with blood pressure and medication has been a freak show. When I was previously on hemodialysis a year ago, my blood pressure would drop during the session, and often it would be too low when I was done (<100 systolic). I would feel lightheaded and the nurses wouldn’t let me leave in case I fainted and crashed my car.
Fast forward to heart surgery. When I got back on hemodialysis, the blood pressure was still low-ish, but quickly increased until I was hitting 180/100 consistently. We started adding medication from just Metoprolol to including Benicar (Olmesartan) and NIFEdipine, both 30 mg ER and 10 mg capsules. Post a-fib and ablation, my blood pressure was still high so last week, the rounding nephrologist told me to start taking the 30 mg ER NIFEdipine again. For the next few sessions, my blood pressure has been low when I walked in, typically in the 100/60 range. This would increase some but limits the amount of fluid that can be removed during the session. So now, I have to skip the evening NIFEdipine before dialysis (M/W/F), while keeping the 10 mg capsules for emergencies. Confusing…
I also got my dialysis dry weight dropped by another 0.5 kg to 88.0 kg. My ankles are still pretty swollen from edema so maybe this will also help drop my blood pressure further.
The tech who has been sticking me consistently had problems today with the needles. He ended up using four needles to get good flow on both arterial and venous connections. There is also a difference of opinions on what I should do. My nurse and (assigned) tech has been harassing me to go see the vascular surgeon. I’m not sure what he is going to do when I tell him the dialysis center is having problems. I don’t want another surgery on my arm. At the same time, the head nephrologist came by today and asked me to get my chest catheter removed. The same vascular surgeon said he will remove it in his office. The last time I had to go to the hospital; it was just the pre-op area but still took 4-5 hours.
We now have 75 cases of infected employees in our office. This number was 67 over the weekend so that’s +8 in one day. A lot of people in my department are opting to stay home again. HR stresses that almost all cases of infection are from activities outside of work. The company is making everyone wear surgical masks in the office instead of just the cloth ones. We know that’s not happening in California in general.
Speaking of California, the governor has re-closed a bunch of businesses again, including churches. My church just sent out an email letting everyone know that the church is shut down again until August 2nd. The senior pastor was very adamant about opening up the church for Memorial Day weekend. I don’t understand why people can’t just stay home for another few weeks. We need to figure out work and daycare but to haphazardly go out to random gatherings is just careless or stupid. California initially seemed to control the spread of COVID-19 but here we are in July, and emergency rooms and ICU’s are running out of beds again.
I’m usually up early on Tuesday/Thursday/Saturday for dialysis. However, I have not noticed the comet in the sky at 5:00 am. So this morning, I went outside to look for it specifically.
I have an iPhone app (Night Sky) that showed me where the comet should appear in the sky but there were houses and trees in the way. In addition, we have very bright street lamps which basically ruins your night vision. I didn’t see anything, which is typical for living in the Los Angeles basin. I probably have to drive pretty far to have a dark sky overhead.
My sister just called me. She went in for a CT scan today to check on her kidneys. She was ready to donate about two years ago but UCLA rejected her because the CT scan showed a shadow, and a biopsy attempt failed to get a sample. After two years, the shadow on the scan has not changed much. The radiologist diagnosed the shadow as a benign cyst, not a legion or tumor, and said no further follow-up is necessary. All this was sent to UCLA this afternoon.
Hopefully, UCLA will accept my sister as a donor. After all, she is a perfect organ donor match to me so that should reduce the amount of immunosuppressive drugs needed after transplant surgery. Fingers crossed!
Since I’m kind of out-of-office twice a week, my boss asked me to look at additional leave options. I’ve known him for about 20 years and work for him during 17 of those years. He really wants me to get better before stressing out about work. With the growing number of infected employees at our work location, it’s getting more stressful.
I checked with work and they said the FMLA leave limit is based on a rolling 12-months and I’ve used up 59 out of 60 days of allowed leave. That rules out additional medical leave or intermittent leave options since I only have one day before it resets this November. My only options are taking a sabbatical, which is only three months max, or going part-time. To keep my benefits, I would have to work 30 hours/week minimum.
Since we have a few work emergencies, I think I would go with the 30 hour options so I can still work on my project and provide support to the department. This was, even though there’s a 25% pay cut, I’m still occupied and still make a good salary.
My dialysis center rotated techs this week so there are two different techs in my area. I know all of them since they rotate every three months but since the person assigned to my chair has not seen my fistula before, she wanted to try and stick me. Also, they don’t even bring out supplies for hooking up the chest catheter; it’s all stuff for the fistula.
She tried Tuesday and was not successful so she called over the tech that has been sticking me for the past few weeks. Likewise, she was unable to hit the vein yesterday so she call the other tech to help again. However, since she made several attempts already, when the other tech finally hit the vein, my arm was already pretty sore. He also had some problems with the arterial needle so my arm was hurting pretty noticeably for the entire four hours.
At the end of the session, when the tech pulled out the needles, the arterial wound would not stop bleeding. I was applying pressure with a gauze pad but blood kept flowing out of the hole and made a mess. I’ve seen this happen to other patients but to experience it was weird. We finally managed to stopped the bleeding and I sat for 20 minutes applying pressure to the needle sites.
A co-worker showed me an Intranet page at work that has daily COVID-19 updates. The page also has a tally of the number of infected employees. At my location, there’s probably ~5,000 employees and the latest infection count is ~60 or slightly over 1%. I don’t know if that’s good or bad compared to other companies listed as “essential” but I decided not to go to work yesterday, even though it was a Sunday. Other co-workers were also concerned with the number of infected employees and decided to work from home more often as well.
The scary part of COVID-19 is the wide variety of symptoms for those infected. For a lot of people, there are mild to no symptoms. For others, they sometimes die within days of the infection. You have to assume the worst so avoiding infection should be very important. I really don’t understand the people that congregate in large groups without wearing masks.
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Update: 7/8/2020
I checked our work’s Intranet page and now it says 65 employees infected in my office. That about +3 each workday. We can’t figure out whether they are getting infected at work or outside of work (bars, restaurants, etc.) so it’s difficult to determine the risk of actually showing up to work. In May and June, it did look like we (California) was getting a handle on the spread of the virus but now it’s turned into a sh*tshow again.
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Update: 7/10/2020
As of 5:00 pm yesterday, the infected count in our office site is up to 67. That’s +8 in four days. Why does this feel like a game of Plague?
This is my 3rd anniversary for dialysis. I started hemodialysis on July 5th, 2017.
A different nurse tried to stick me today and came up dry. Shehad to call the recharge from another unit to finish inserting the needles. Since he had to dig a bit, it hurt a lot more than the two previous day’s.
Ugh. Since I still can’t sleep well at night, I’ve been binge watching more yacht videos. I made a previous post about expedition yachts but doing the math, it will take a lot of money and time to make ocean crossings. For example, for a Nordhavn 60, it can do 6,000 nautical miles at 5.6 knots with a mileage of 2.67 nmpg. It’s about 3,000 nautical miles from New York to Southampton (England) so the trip will take 22 days non-stop and use up 1,124 gallons of diesel. If we use $2.50/gallon for marine diesel, the fuel cost for the trip is ~$2,800. For something like a 70 foot sports cruiser, cruising at 17 knots will only give you 0.2 nmpg, making every trip expensive. Also, the yachts that I can afford look very uncomfortable to live in full-time. Maybe I just need to downsize a lot.
Another option is a solar yacht. There is a company called Silent Yacht that makes solar powered catamarans. They have 55, 60, or 80 foot models starting around $1.5M. The good thing about a catamaran is the amount of living space onboard. There is room for a several salons, galley (kitchen) and 3-4 bedrooms. One of their older models did an Atlantic crossing and all of it on solar power. Like expedition yachts however, cruising speed on solar is 4-6 knots so any long distance trip will also take forever, especially if the sky is cloudy.
Silent Yacht 55
The main problem with catamarans is that it takes a double berth at a marina so if I wanted to dock this thing and live in it, it would cost a lot more. Another option would be a hybrid powered yacht by Greenline. Their boats are mainly diesel powered but also have solar panels and electric motors to drive the boat short distances. Kinda feels like a plug-in hybrid of the sea. Problem here is the maximum range for smaller boats seems to be only 1,000 miles which is likely not enough for cross ocean travel. Maybe I’ll just go on a cruise ship.
Greenline 39
All this is wishful thinking at this time. Without a kidney transplant, I’m not going anywhere.
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I actually spent a few hours looking at real estate along the ocean in SoCal. It doesn’t look good. There are only a few places that have houses with docks: Belmont Shores, Naples, Huntington Beach, and Newport Beach. Basically everything is over $2M if you want a private dock.
My parents’ friend called and said one of their relatives had a kidney transplant in Taiwan. Basically you can contact the hospital and they will source a kidney for you and perform the transplant. Of course as a foreigner, you will have to pay everything out-of-pocket. My sister estimated that surgery for donor and patient probably costs ~$400k in the US and I’m guessing ~$250k for the actual kidney.
The interesting part is that I was born in Taiwan, and like my post about Canadian health insurance, I think I can qualify for Taiwanese health insurance if I live there for six months. If I do so, I will need to pay for dialysis out-of-pocket during that period since I can’t slip back to the US every other day for Medicare coverage.
Medicare will also be an issue since my parents’ friend is over 65, I don’t think they will lose coverage. However, since I qualified for Medicare through ESRD (kidney disease), if I get a transplant outside the US, I will neither need dialysis nor another transplant, which means no Medicare. In the US, Medicare will pay for 3-years of post-transplant medication. If I go with the foreign route, I will need to keep or find a job for medical insurance to pay for immunosupressive drugs.
My sister is schedule for a CT scan next Friday. Let’s hope for the best. Next option is to transfer my wait list to Mayo Clinic in Phoenix, Arizona. I don’t want to think about the Taiwan option, yet.
The same tech was able to get both needles into my fistula today as well and we ran the machine at 350 mL/min. He did mention that starting Saturday, another tech will try to insert the needles so hopefully he has good luck as well. They have been using the standard 16 gauge needles that should sustain higher flow rates so I’m going to ask them if we can run at 400 or 450 mL/min and possibly cut down on the dialysis time.
Woohoo! One of the techs that was the first to try and insert needles into my fistula tried again today. Since everyone thinks my veins are both deep and moves around a lot, all the techs try to push the needle perpendicular to my arm to go deep, then dig around to get the blood to flow. This is weird since you can clearly feel the vein right below the skin layer. Anyway, the tech went shallow and got both needles to flow on the first attempt. One of the needles did hurt for the four hours if I moved my arm slightly but they were able to run the machine at 350 mL/min. Sigh… finally. I’m hoping this trend continues so I don’t have to have another surgery on my arm, and they can take out my chest catheter so I can take showers again.
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The arterial “wound” is still bleeding after an entire day. I swapped out two band-aids and it has soaked both of them. I think it’s finally stopped bleeding. I’ve seen “accidents” at the dialysis clinic where blood is squirting out of the arterial needle prick point resulting in a huge puddle of blood on the floor. I hope I don’t get that at home.
Life with chronic diseases 