Since COVID-19 hit, I have not eaten inside a restaurant. Any prepared food we get has been take-out. This is especially true for lunch after dialysis. As I’m already outside the house, it’s more convenient just to pick something up on the way home, or eat it while Supercharging my car. I couldn’t sleep because of the pressure my chest, so I pulled up Mint to see how much I spent where in the past six months:
Restaurant
Transactions
Six Month Spend
Raising Cane’s
24
$214.58
Jersey Mike’s
12
$110.35
Panini Kabob Grill
12
$155.97
Carl’s Jr.
3
$14.73
Johnie’s Jr. Burger
?
Cash
Others with one or two transactions include Victory Diner, Holdaak Chicken, Pei Wei, McDonald’s, Arby’s, Yoshinoya, Taco Bell, John’s Place, and In-N-Out Burger. No surprise the restaurant with the most transactions is Raising Cane’s since I’ve been going there twice a week recently. Now that I can order just chicken fingers a la carte, I don’t need to get their combo with stuff I don’t really want.
If I go three times a week and average $10, then it’s about $120/month. I guess that’s not too bad since otherwise I would just skip lunch, like I often do on Mondays/Wednesdays/Fridays. That’s okay too except I’m losing too much weight and probably need to eat more (and better).
Well, this is a crappy post for #800 but whatever. It’s been a few days since I went walking outside so I decided to do so tonight. It didn’t work out that well. Fitbit said I only walked 0.35 miles total, which means I ran out of breath after less than 1/5 of a mile. I ended up turning around but had to sit down for a bit on the way back. I also felt dizzy and almost fell trying to sit down on the curb.
I’ve been having more difficulty breathing this weekend. My post dialysis weight is super low but maybe I drank too much already? The two scales are different but I left dialysis at 83.2 kg. I just weighed my self at home and the scale said 84.7 kg. Maybe I did drink 1.5 L already and all of it went to my lungs. During a nap this afternoon, the clicking noise and sensation from my chest was super noticeable. Now I’m worried about how it will affect the Lexiscan test this coming Tuesday.
Also, since I felt dizzy, I thought my blood pressure may be low. Nope… it was totally the opposite. When I got home, I also measured my BP and it was 223/105. WTH? Those seem like fake numbers. I just took some medication at dinnertime too. How can my BP fluctuate by over 100 points day-to-day? Is it all fluid overload? I say this as I’m about to drink a Nepro shake. My meals today have been pretty random so I think I need a protein boost.
One of my nephews gave my dad a pair of Apple Airpods last Christmas and I took them to use during dialysis. They work fine but the bass response was a bit weak so I went on Amazon to find another pair. I ended up buying a pair of Tozo T10 earbuds. They are much cheaper than the Apple Airpods and sound better but I have trouble keeping them in my ear. Over time, they tend to want to fall out. Even worse, the battery life is atrocious. I can barely get three hours of use on a full charge, while my dialysis session is four hours. The Apple Airpods last much longer (website claims five hours of continuous use). I have to carry a backup set of wired headphones to dialysis in case I want to keep listening to music during the last hour of treatment. I tried buying better earbud inserts for the Tozo but it hasn’t helped much, and I can’t do anything about the battery life. Bluetooth pairing is also a PITA compared the ease of the Apple Airpods. What I really want to bring is my wired Sony MDR-1A headphones but they’re huge and a bit unwieldy.
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Just realized that this is published post #800 799. That’s it.
This is going to be about politics and a little bit about dialysis. We’re slightly over a month away from the November elections and once again, California has a ton of propositions on the ballot. I hate propositions since it’s so easy for special interest to manipulate. However, with the Democrat supermajority in California, the state legislature is a one-party system where only one point of view matters and there’s effectively no political opposition.
For California propositions, there are many websites claiming to provide information, but most are totally biased. Ballotpedia seems to be the least biased and here is their website for California 2020. My normal reaction to ballot propositions is to vote no unless it is super compelling, since it’s usually sponsored by groups that will benefit monetarily or want to bypass a law they do not like.
Specifically, I wanted to comment about Proposition 23 since it impacts dialysis centers. This is the third ballot proposition sponsored by SEIU-UHW West or Service Employees International Union, United Healthcare Workers West (not linking to these a$$holes) as part of their fight to gain a foothold in DaVita and other for-profit dialysis centers. All the propositions are flawed since they all impose additional costs on dialysis centers in order to force them to compromise on allowing SIEU to form a union. This particular proposition aims to have a full-time physician at each dialysis clinic. Currently, a nephrologist from each office will do weekly rounds and talk to patients about their care. This is totally sufficient. During dialysis, 99% of the time you are just sitting there. When there is an emergency, the clinic can call for a paramedic since an on-site doctor won’t be able to do much anyway. All this proposition does is increase operating costs for dialysis providers until they cry uncle and let the union in. I hate unions, especially SEIU since they’ve been trying for three years to gain political power on the lives of dialysis patients. All the nurses and techs at my dialysis clinic were/are against all these SIEU proposed propositions.
The other proposition that I’m pretty adamant about is Proposition 16. This is the proposition trying to overturn Proposition 209 passed many years ago by a Republican administration. If you look at the supporters, it’s just about every Democratic politician. I am totally against affirmative action, which to me, is just discrimination in reverse. I am voting no on this one too. If you want to see the results of racial preferences, just read up on the story of King/Drew Medical Center where identity politics overruled medical competence. .
Since I have to get up at 4:30 am three times a week to get to dialysis by 5:30 am, breakfast is always an issue. The dialysis center wants patients to eat before the session in case our blood sugar drops too much during the session. I’ve been alternating between eating cereal with almond milk, and just toast with some jam or peanut butter. There’s not enough time to prepare something more elaborate unless I want to get up even earlier.
I know there are pre-cooked breakfast sandwiches and Jimmy Dean seems to be the most common brand. I thought they were available at Costco but I didn’t see anything on their website. Since my parents were going grocery shopping today, I asked them to pick some up at our local Albertson’s (supermarket). I went to the Jimmy Dean website to send them the specific sandwich, and saw the nutritional information for the Bacon, Egg, and Cheese Biscuit sandwich.
Wow! When I first saw the numbers, I thought they screwed up and listed the values for an entire box of sandwiches. Nope. Just one. How can a breakfast sandwich contain so much fat and sodium? Forget dialysis patients… normal people shouldn’t be eating this for breakfast either. It’s also pretty big: 400 g is almost a pound. I think I’ll stick to my two pieces of toast for now. I told my parents that I can’t eat this so don’t buy it.
The nutritional information chart does not give any information on potassium and phosphorus, the two things dialysis patients need to look out for. Judging by the ingredient list, there’s probably a lot of both in the sandwich as well. Also, that’s a lot of chemicals in the ingredient list.
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Weird. I had given up on the entire line of breakfast sandwiches but decided to look at some other products on the website. The nutritional value for other sandwiches are much more reasonable. They’re probably never going to be classified as “healthy” but it’s much better. I’m guessing it’s the bacon in the first sandwich since the rest are made with sausage.
For the sausage muffin (Egg McMuffin clone!), it’s only 130 g so it’s much smaller, and only has 350 calories, 20 g of total fat, and 760 mg of sodium. Again, not great, but not a widow-maker like the other sandwich.
Even though my breathing is a bit easier, there’s probably still some fluid in my lungs from looking at my lower legs. If you push down on my ankle with your finger, it still leaves an indentation for a few minutes, which means edema. The dialysis center has been “challenging” my weight for a few weeks and today, I finished at 83.2 kg using their scale.
I thought my ankles were going to cramp a few times but maybe they were just stiff. I really don’t like the fistula since I’ve never had any pain using the chest catheter. I don’t think I can do home hemodialysis since it’s so hard to get the needles right. Sigh, if the transplant doesn’t happen, then I’m probably stuck with in-clinic hemodialysis for several more years.
My fistula failed this morning. The tech could not get any blood flow from the arterial needle. She tried several times but was unable to get the needle in the right place. One of the supervising nurses decided to go up higher on my forearm and create a new insertion point outside of the area suggested by the vascular surgeon. Even though they used lidocaine, it hurt a lot when the needle was inserter. Fortunately, she was able to get good blood flow and we used the new site as the venous site since it was higher up in the arm. However, it did hurt pretty badly for the rest of the session, and I was told not to move my arm since it was a new site. They were afraid the blood vessel would collapse then I would be without a fistula. Not sure what happens after that? Skip a day of dialysis? Go to the hospital for another chest catheter?
The gauze wad (second set of tape from the wrist) was the blown site. The tech had removed the first needle since I said it was hurting. They were going to leave all three needles in until the end of the session. As usual, there was quite a lot of bleeding but that stopped quickly. I tried to sleep but each of the three needle sites were painful so I was awake most of the time.
Here’s what my arm looks like the previous day. There’s persistent scabbing on both exit sites, and the vein underneath is very visible. It’s hard to see in the photo but the vein protrudes out quite a bit. I’m thinking of putting on a band-aid over the needles sites for cosmetic reasons since I look like an IV drug user with all the marks on my arm. Hopefully some of this will fade post-transplant.
My thoracic surgeon, the one that ordered the CT scan, finally called me back. However, he called on a Saturday, and I was sleeping during dialysis so I missed his calls. Plural since he also called my work phone. Basically he said the same thing as my nephrologist: there is fluid in my right lung and it needs to be drained if it’s causing me problems. He also wanted me to call his office today.
I called this morning a left a message with the receptionist. He has two surgical nurses helping him. I usually just speak to one of them but the other one called me back. She said that the doctor was on vacation starting today (maybe that’s why he called me Saturday) and then gave me a synopsis of the CT scan results. Since I told her I was feeling much better since the scan, we decided to wait to see if taking more fluids out during dialysis will solve the problem. Otherwise, if there is still a lot of fluid, they have to stick a long needle in me to drain the fluid. Definitely don’t want that if I can avoid it.
She also said there was another note in the results but she’s not sure what it means. She will consult with the surgeon when he returns form vacation and get back to me. I think it has to do with me feeling and hearing the sternum when I lie flat on my back.
I’ve been lucky for a few weeks. Each time neuropathy pain occurs, I’ve been able to take some pain medication and sleep it off. Not tonight. I felt some pain at the top of my left foot yesterday. I quickly took some Tylenol and the pain went away. However, it came back to the same spot about an hour ago while I was sleeping. The pain woke me up and I’ve been trying to massage the spot with no avail. I also took another two Tylenol pills but it had no impact this time. The pain feels like it’s coming from just under the surface of the skin but no amount of hitting or putting pressure on the spot has any impact. In fact, due to the neuropathy, I don’t feel anything there at all except the nerve pain.
In addition to the persistent pain attacks, I’ve notice a huge increase in the number of one-off nerve pains. They would be super painful, but only hit once. Next time, it would be in a different spot. I have no idea what’s going on with that. Maybe it’s affected by the edema so hopefully draining some of the fluids will help.
I’m fully awake now. There is no sleeping anyway in the midst of an attack. I’m going to walk up/down my short hallway to see if that helps.
I just got back from the Apple Store at South Coast Plaza in Costa Mesa. I ordered an iPhone 11 for my mom, and since the earliest delivery date was Tuesday, I decided to go and pick it up. I haven’t been to a shopping mall since before the heart surgery so I had no idea what to expect.
What a clusterfark! First, the good thing was that everyone was wearing a mask. The mall also had dots on the floor showing people where to stand in line. However, there are still stupid people, even with masks. There was a woman in front of me talking to one of the people guarding the door to the Apple Store. Her mask was all blinged out with tons of glass gems. When she talked, she kept pulling the mask away from her face. Ugh, the mask is to protect other people; you’re supposed to keep it against your face, especially when you talk or exhale. Likewise, the six foot dots seem like a good idea but only if there are three people in line. There was a huge group of people in front of the Apple Store trying to get in, and more of us just want to pick stuff up. It was very confusing since different people sent me to different lines. There was almost no way to keep six foot separation between everyone. I understand the need for precaution and safety protocols but it does seem like theater at times. Hey, we’re not sure how effective these guidelines are, but we’re doing something. Reminds me of TSA’s security theater at airports: lots of hassle and we’re not really any safer than before. Each store had their own procedures and a line to get in. I think, at least for now, window shopping is dead.
The phone is nice. My mom got the Product Red color and I’m backing up her old iPhone 6S+ to her computer so I can restore it on to the new phone. I hope the transfer process goes smoothly; she has a thousand games on her iPhone. We only got the 64 GB version so it was $700 before tax.
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It took several hours but I managed to copy over everything on to the new phone. The problem was that the new phone wanted me to install iOS 14 while it was still copying data over from the old phone. Then it got stuck twice on the system upgrade so I had to restart the entire process.
I scheduled a meeting with Chase Bank at 11:00 am today so I got some lunch at Carl’s Jr. across from the hospital, and went to charge my car for about 30 minutes. The Supercharger only had three stalls occupied so I was able to charge at ~80 kW for most of the session.
I’m pretty cheap and not too hungry so I got one of the more inexpensive meals: California Classic. It was ok. I think the Famous Star I got last time tasted better but was a couple dollars more. I think CJ is trying to compete with In-N-Out’s Double Double with this burger but it’s not really the same.
Nutritional information for the California Classic burger:
I also had a medium unsweetened ice tea so that probably didn’t add much to anything on the list. Nutritionally, it compares pretty closely to the Double Double except the DD has a lot more sodium. Also, I just had several bouts of diarrhea. I’m not 100% sure it’s Carl’s fault but the burger combo was the only thing I ate after dialysis. I weighed myself after all the water came out and it was 83.3 kg at 11.3% fat. I may still yet get down to 80.0 kg before the kidney transplant surgery.
Even though I’m working from home, having access to a car is still important. I drive myself to dialysis three times a week, and also need to drive to other medical and dental appointments. Occasionally I drive to my sister’s house and also out to get food. I see dialysis patients that depend on third party medical transport and it severely limits their freedom and mobility.
An electric car saves you on regular maintenance (no fluids to change) and brakes (regenerative braking), but puts a lot of wear on the tires. This is due to the high torque output of the electric motor plus having a very heavy car. I changed all four tires at around the 30k mile mark, and now I just changed the rear two tires at ~60k miles. The front still has 5 mm of tread which is >50% life.
I scheduled service early this morning through the Tesla phone app and there was a 9:15 am opening in Santa Ana. The service center is pretty new (10 months), and mostly services the Model 3. They did have my tire in stock, which was some kind of extra quiet Goodyear Eagles, for $230 each. They also charged me $100 to mount and balance both rear tires so the total with tax was ~$600. I saw the tires on the Goodyear website for $232 so the price was fair. I though about getting the regular Eagles for $160 each but stuck with the OEM tires. Originally they said two hours but they were done only after an hour. Br0wsing r/teslamotors on Reddit, there seems to be quite a few bad service experience posts. My car has been serviced 5-6 times and each time it has been a good experience.
As opposed to the all day excursion last week. This time, it was just to remove the suture from the tooth extraction. I was feeling the thread with my tongue all week. It took me about 30 minutes to drive to the dentist office, and about 35 minutes back. I was actually in the chair for about 3 minutes. He said everything looked fine, and the socket should close up in a few weeks. There is a mesh covering the bone graft material/crystals in the socket still.
When I go to leave the dentist office, the center console of my car wouldn’t come on. This happens sometimes so I reset it and it took 5 minutes to come back. There was also a tire pressure warning light so I pulled out my portable air pump to fill up the tire. Then I noticed that both rear tires are completely bald. The driver side tire is actually showing some steel belts under the rubber. One bad thing about electric cars not needing service is that no one checked the tires (I know, I should have). The front tires seem fine so I have to get two (or four) new tires.
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Just now, the mesh covering the tooth socket came out. I was taking a work call and felt a weird object in my mouth. It’s less than 1 cm x 1 cm but it really stinks. I texted the dentist asking him what to do and he said it’s fine, just be careful not to eat or brush on that side for another week in case I knock out some of the bone graft crystals.
I have another large/deep cavity to take care of along with some smaller cavities. The dentist wisely schedule me for teeth cleaning every three months instead of six. I’ll pay more but probably well worth it for me.
I guess I’m using this title (Fistula Update) for general dialysis updates. Today was pretty uneventful. There was some pain in my arm and a bit of bleeding during the session but nothing noticeable. There was some problem with the arterial line at the beginning but the tech moved the needle a bit and it seemed to work fine afterwards. I was pretty tired again and semi-slept through about two hours of dialysis.
For some reason, the latest lab results are not on the patient portal. One of the nurses told me that my kT/V was 1.27 and URR was about 66%. Once again, I just barely passed the bar of 1.2 for kT/V and 65% for URR. That pretty much means they won’t be shortening my dialysis time in the near future. Maybe if they run the machine at a higher flow rate.
Blood pressure was weird again. I started at about 130 and again, it gradually increased to 182. At about 9:15 am, I took 10 mg of NIFEdipine and by 10:00 am, it was back down to 120’s. I think the final standing reading was 13o-something. My doctor friend also mentioned the importance of fluid balance so maybe my BP will stabilize once they remove some more fluids from me. I left dialysis today at 83.8 kg.
Not as good today compared to yesterday. I had to stop about 1/4 mile into the walk to catch my breath. Maybe it’s because I have another day of fluids in me. I was going to take a turn-off to cut the walk to about 1/3 mile but decided to press on and walk the 3/4 mile loop like yesterday. I ended up walking 0.74 miles at a pace of 27’09”. It’s a bit slower than what I did yesterday but still slightly above 2 mph.
You can definitely see where I decided to sit and take a break. Heart rate was up to 113 bpm just from slow walking. Not good. Current heart rate is back down to 65 bpm.
It will be like an experiment. I’ll try again after dialysis tomorrow to see if the breathing is better and if there’s less pressure on my chest.
Uh oh, another not-so-healthy choice for lunch. My parents went out shopping for groceries today and they’re picking up Korean fried chicken from Furai Chicken for lunch. They’re going to the one inside Zion Market in Irvine. There is no website for that location but here is one from the same chain in La Cresenta. I’ve had their chicken several times and it’s pretty good and not too greasy, though it’s still probably not good for you.
For half a fried chicken, Furai charges $13; a whole chicken is $23. Compared to KFC, an 8-piece bucket goes for $17. I don’t know how the two compare but I feel the 8-piece is probably an entire chicken. It does look like Furai is quite a bit more expensive than KFC but it is better tasting than KFC.
There’s no nutritional information for Furai on the web but since KFC is a national chain, I think they are required to provide it. For four pieces of original recipe KFC fried chicken, here is the nutritional information:
Nutritional Information
KFC Original Recipe
%DV
KFC Grilled
Calories
930
510
Total Fat
56 g
86%
23 g
Saturated Fat
12 g
60%
7 g
Trans Fat
0 g
0 g
Cholesterol
330 mg
110%
320 mg
Sodium
2,910 mg
121%
1,530 mg
Total Carbohydrates
26 g
9%
0 g
Dietary Fiber
4 g
16%
0 g
Sugares
0 g
0 g
Protein
80 g
75 g
4 pieces: breast, drumstick, thigh, whole wing
Whoa! I guess one of the colonel’s secret recipe ingredients is salt. There’s almost 3 grams of salt in the breading on just four pieces of fried chicken. What if you don’t eat the chicken skin? I wonder if that cuts down on the fat and the salt? I went back and looked up the nutritional information for KFC’s grilled chicken and it does appear slightly healthier than the fried chicken.
I think my parents are buying an entire fried chicken from Furai. I’ll try to keep lunch to two pieces.
I decided to take a walk outside tonight. The weather cooled down a bit so it was pretty nice outside. I ended up walking 0.74 miles at a pace of 24’54”. That’s pretty close to one of my walks before the whole breathing problem. It’s kinda weird that as soon as I got a CT scan, I started feeling better. There was some pressure and dull pain in the chest area compared to before. Also, I was running out of breath near the end of the walk, but much improved from running out of breath after only 3 minutes. Hopefully this trend continues and the source of the problem is too much fluid. That can be easily taken care of with more ultrafiltration during dialysis. If I’m still having heart issues, then that’s a much bigger problem.
Each day after dialysis, as they’re removing the needles, the tech would ball up a piece of 2×2 gauze and tape it down on the exit site. I would then have to put pressure on the gauze for about 10-15 minutes to stop the bleeding. Then they would put a ton of tape to continue to apply pressure on the gauze. When I get home, I would remove the gauze after about six hours.
Well, ever since I started using the fistula, each time I remove the gauze, one or both of the needle exit sites would still ooze blood. Usually I would wipe up the excess blood, and put a band-aid on it. Sometimes the blood would overwhelm the small band-aid so I would have to change it. This means going through a lot of band-aid strips. I have a drawer full of medical supplies and there are about 10 boxes of assorted band-aids.
Today, the upper exit site was bleeding a bit. Like an idiot, I put the band-aid at the wrong place so it kept bleeding. Good thing none of the blood dropped on the carpet.
Dang it. The band-aid is on the right exit site but the blood has saturated the small gauze pad and is now leaking out. I’ll need to stop the bleeding first and change the band-aid again.
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I now have a piece of balled up gauze held down my medical tape on my arm, much like at the dialysis clinic. I’ll keep this on for about 15 minutes to see if the bleeding stops. There sure are a lot of side issues to deal with during dialysis.
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Aiya! It’s almost 8:00 pm and I’m still bleeding. I had a piece of gauze on the exit site for a few hours then put another band-aid on but just saw blood flowing out under it again. I now have yet another piece of rolled up gauze on my arm. I guess we’ll try again and see if I can get it to stop bleeding this time.
I spoke with my nephrologist today during dialysis since she was the doctor doing rounds. She lowered my dry weight some more to 84.5 kg since my blood pressure was still on the high side, and there seems to be some fluid in my lungs/chest cavity. For some reason, she could see the results of my CT scan from last week in the computer system, even though I have not received a call from the thoracic surgeon’s office. My nephrologist read the results to me. Other than the fluid, there wasn’t anything else abnormal. Probably the fluid is causing the shortness of breath, and maybe the extra pressure in the chest cavity. She also commented that my ankles look more bloated than before. She agrees with my gut feeling that I am losing tissue mass but retaining more fluid so my overall weight remains pretty constant. We will keep lowering the dry weight until I can’t take it anymore, i.e., cramping. Today, I weighted out at 83.9 kg, another low record.
I am feeling much better than a few weeks ago when I first called the thoracic surgeon’s office. Probably we removed some of the excess fluid from me so I can breath easier. Maybe I will get to 80.0 kg before transplant day.
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My blood pressure is still a mystery though. This morning, I measured my BP twice and both times it was 120/70. I then ate some oatmeal for breakfast, and took my two morning BP pills. When I got to the dialysis center, my first standing BP reading was 110/70. After sitting down for awhile, it was about 132/70. However, each half-hour measurement after that showed an increasing BP, even though the machine was removing fluids from my bloodstream. At the end of the session, I had a BP of 182/something. It doesn’t make any sense unless the low blood pressure was due to the NIFEdipine I took last night. It is the extended release version but that’s a long time to be still active. Is dialysis flushing out the remaining NIFEdipine plus the two medications I took in the morning? I asked my nephrologist and she didn’t really give me an answer. I think they’re hoping once we remove a few more kilograms of fluid, everything will stabilize themselves. In the past, I use to have borderline hypotension after dialysis, and had to sit for up to 30 minutes drinking water to raise my BP. Now they’re happy if my BP is under 160. Crazy.
I noticed it again today. During dialysis, my right hand would get very cold. My hand would feel cold to me, and is actually cold to the touch. Blood to the hand was already diminished due to the fistula. It joined an artery to a vein in my lower arm so there is less blood flowing to the hand. The surgeon said to notify his office if I had a lot of numbness in that hand, but I’ve been okay so far. While on dialysis, the blood is drawn and put back near the same place in the blood vessel so I don’t know why it would make the coldness worse. Maybe it’s psychological.
It’s really staring to become more noticeable and is not very comfortable. I’m thinking of wearing gloves a glove on my right hand to keep it warm. We’ll see what the dialysis techs think of my idea.
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Other than the cold hand, dialysis went pretty well today. There was some intermittent pain in one of the needle sites but if I don’t move my arm, the pain is minimal. Likewise, when the tech removed the needles, it only hurt when she pushed down too hard on the gauze to prevent bleeding.
Life with chronic diseases 