The same tech that stuck me in one try Saturday tried again today but was unable to draw blood. When they removed the needle after several tries, there appeared to be a small blood clot on the gauze. I think that is why she wasn’t getting flowers out of the needle set. She was about to try again (3 hours left) but the nurse told her to forget it today and wait until Thursday to try again. Fine with me. I forgot to bring by my iPad so I have to use my iPhone. Having two hands free makes it easier.
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Actually I’m happy they’re using the catheter today and running the machine at 350 ml/min. At least I’ll get a good cleaning.
It’s ~3:15 am and I’ve been in bed since 11:00 pm but no sleep. Breathing when lying down has become more difficult as well as my cough. Actually, I coughed so hard that I ended up vomiting three times. Again, I don’t think it’s COVID-19 since I have no fever. It’s probably inadequate dialysis since my last URR test result is only ~61%. Not sure what the dialysis clinic will do since we’re trying to get the new fistula to work.
It also could be me playing iPad games in bed. I either roll to the left or the right while in bed and I noticed my chest hurting a lot more after awhile. Maybe I should stop that too.
After one of my coughing sessions, I noticed that the arrhythmia was back. Heart beat was still in the 50s but irregular. Then my heart rate increased to 110 bpm, like it did last week. However, it only lasted a few minutes and then slowed back to normal. I think the coughing fit has something to do with it. Weird.
Our workplace is offering COVID-19 testing for employees. We contracted an external company to operate a medical clinic several years ago and they are doing PCR (Polymerase Chain Reaction) tests for anyone that is symptomatic. Only problem is you have to be on-site at the clinic to get the test. This is where they stick a cotton swab high up your nose. Results should be available within 24 hours. I’m not sure where the clinic is sending the samples since all labs are backed up currently.
We’re also participating in an antibody testing study with a team from Harvard-affiliated institutions. Here a random sample of employees will be chosen for a blood test, also taken at the work clinic, to see if they’ve been exposed to the coronavirus. I guess the end goal is to see if these antibodies provide protection against reinfection.
It’s good we’re actively participating in testing programs since our Federal government dropped the ball on this one. Can’t ask people to go back to work and risk their lives if we’re not even testing.
I walked on the treadmill again tonight for a bit. It was about 20 minutes at ~2 miles per hour, and once again I felt fine afterwards. However, when I tried to take a nap this afternoon, my breathing felt worse than before. I had to sit us several times because I felt like I wasn’t getting enough air.
As mentioned before, I think I’m not getting enough dialysis due to the clinic breaking in my fistula. Even running at 250 ml/min, that only gives me ~70% of the dialysis I was getting through the chest catheter at 350 ml/min. I found an article online that lists some symptoms of inadequate dialysis:
Weight loss (or gain if extracellular volume excess is severe)
Persistent uremic symptoms, including anorexia, loss of taste, nausea/vomiting, fatigue, pruritus, neuropathy, sleep disturbances, and restless legs.
I just walked for a bit on the treadmill. I’m still thinking about Wednesday when I ran out of breath walking in the parking lot at UCLA. It was a really weird feeling. So I eventually walked about 0.6 miles and ended at a speed of two miles per hour. I felt fine the entire time so the only difference has to be the surgical mask. For some reason, it’s very hard to get airflow through the mask so probably I was cutting off the oxygen from getting to my lungs and hence the shortness of breath.
Wok Hei is a primarily takeout/delivery “Chinese” food restaurant. When I say Chinese, I mean American Chinese food. Whenever you see stuff like Moo Goo Gai Pan (蘑菇雞片) listed on the menu, you know it’s not authentic Chinese food. Sometimes that’s okay. My boss and I used to go to Pei Wei all the time for lunch. Pei Wei is owned by P.F. Chang’s, where P.F. stands for Paul Fleming. Anyway, I’ve order from there a few times before. I was going to get a 2-dish family meal but I remember my dad not liking their food so I ended up getting one dish, plus used some points to get some fried egg rolls.
Wok Tossed NY
I ended up getting something called Wok Tossed NY ($10.95) which has beef, mushrooms, carrots, scallions, and lots of garlic in a sweet sauce. When they say “sweet”, they really mean it. There was a lot of tender beef slices but it was way too sweet. It came with a small container of white rice, which I finished quickly since I needed something bland to mix with the overpowering sweetness of the sauce. I only ate about half of the dish; I guess I can cook some rice and finish it for dinner. It’s not bad but not really good. I’d probably give it 3/5 stars if I had to grade it. It was the same for the other two times I ordered from there: okay but not really memorable.
Fried Egg Rolls
Incidentally, they used to have two locations: Villa Park and Tustin. I used to go to the Villa Park location since it was closer. That location shut down several months ago so I had to go to the other location for pick up after dialysis. I think we’re just outside their delivery area.
Looks like they have a fleet of Fiat 500’s for delivery
I got called into dialysis early today. Right away the tech tried to stick a needle in my arm. This time she used a regular needle. It was longer and thicker than what they’ve been using on me before. It looked really big and scary. They did give me lidocaine before so it didn’t hurt but now the lidocaine is wearing off, my arm is pretty sore. The machine is running at 250 ml/min so they’re slowly ramping up the flow rate too.
Initially the lead nurse wanted to put two needles in my arm but the tech didn’t think I was ready. Since this was the first time using the regular sized needle (instead of the thinner short needle), we decided to still run one needle in the fistula and use one port in the catheter a few more times.
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It’s over. It wasn’t too bad during the dialysis session, though I had to actively remember not to move my right arm. It was still sore throughout the entire session but bearable; not sure about having two huge needles though. It did hut a lot more when a different tech pulled the needle out. I only held it for about 10 minutes before she taped me up so I hope it doesn’t bleed everywhere when I take off the tape and gauze.
Since my current donor is my high school friend, we talk on the phone every so often. He said that he sent in some recent tests and UCLA called him to say that the transplant committee is meeting for a final decision on him as a donor. On my side, they’re asking for labs again so it does appear there’s movement, even during the current state of emergency due to COVID-19.
Now I have to decide what to do if UCLA wants to schedule a transplant. There is huge upside since I will like be done with dialysis for 10-15 years. Not only can I live a normal life again, dialysis just barely keeps you alive. I’m sure other bodily functions will work better with a new kidney instead of relying on dialysis. The downside is the huge infection risk due to the immunosupressive drugs required to avoid organ rejection. It will make me more susceptible to infections, including COVID-19, and I have to go through another 3 months of recovery. Maybe I can get California disability again.
I was all ready for them to poke me in the arm again but the dialysis tech said no needles today. I asked them “why” and the reason was April labs. They were drawing blood today for our month labs and one of the tests is dialysis clearance. A blood sample is taken before and after dialysis and the lab determines if the dialysis prescription is adequate. Since they have to run the machine at only 200 ml/min when I’m using the needle, and I barely clear adequacy at 350 ml/min, they didn’t want to use the fistula today since I’ll fail the test for sure. That probably means I’m only getting half dialysis each time they use the needle. I’ve been super tired and running out of breath each time I walk anywhere. Maybe inadequate dialysis is the culprit.
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Speaking of labs, the transplant assistant called me yesterday to come in for labs. I told her that I was just there an hour ago (she called at ~1:00 pm) to see the cardiologist. I think she made the appointment for me and then forgot about it. Anyway, I volunteered to drive back to UCLA yesterday but instead, she will ship the test kit to my dialysis clinic to draw samples. They’ve done this several times before and it’s better for me since we can get blood out of my catheter during dialysis without going to a phlebotomist.
It’s been over a month since I posted about my insurance issues. It’s good to have health insurance, but it’s “bad” to have more than one. When you have multiple coverage, all the payers want to be second in line to pay, not first.
During the month that passed, I called and wrote my work insurance many times. Each time the member advocate (MR) would tell me that the supervisor would contact me but he never did. All I heard was that they were still working on it. I provided them with written documentation and contact info for Medicare but it didn’t seem to help. In the meantime, I had my surgery claim rejected (~$18k) plus two months of dialysis (~$36k per month). It was a bit stressful to have ~$100k of unpaid medical claims.
I sent another message this morning and finally got a reply saying they accept the April 1st cutover date, and will reprocess all the rejected claims during January through March. Yay! I hope they do this quickly since I’m getting second and third notices from my providers.
Ever since the heart bypass surgery, I’ve been working on recovery. Part of that is attending cardiac rehab, but also walking a lot more on my own. Since we can’t go out anymore, I’ve been walking on the treadmill in my garage. I even walked a bit last night. It was only 15 minutes and 0.5 miles but I felt fine afterwards.
Today at UCLA, I parked in the underground garage and put on a blue surgical mask to walk to my appointment. I noticed that it was kind of hard to breath through the mask material. Not two minutes later, I was running out of breath and panting like I’ve run a marathon. I pull the mask down a bit and it was better but still felt like I wasn’t getting enough oxygen. This happened to me once before when I was out walking but I was back to “normal” the next time. Anyway, this happened several times today: walking back to my car after cardiologist appointment, and walking from/to my car at work. I hope it was the mask cutting off air to my lungs and nothing more serious. Other options are some kind of effect from the arrhythmia yesterday, or more several symptoms of a COVID-19 infection.
Since I was at UCLA in the morning, I decided to stop by work on the way back. I got notification that I had a package delivered so I needed to go pick it up from the automated lockers. It turned out to be just a bunch of bank statements.
The last time I was in the office was March 13th so it’s been just over a month. The facility is still open since there are thousands of factory workers that cannot work from home. The office side, with all the engineers and support staff, is pretty empty. For all of finance, there are only four of us here today and I’m almost done. I’m tempted to grab my 30″ monitor and bring it home but it’s too big for my home office desk. I already have a 24″ monitor from work so it’s better than just staring at the laptop screen.
As I mentioned in my previous post, my appointment at UCLA was really quick. I saw an assistant who took my blood pressure and updated my medicine list. Then the cardiologist came in and talked to me for 5 minutes and was done. He did say he reviewed my echo-cardiogram and other notes from St. Joseph Hospital and everything seemed fine. He then said he will send a note to the transplant center so they can take me off hold. It took me longer to walk to his office from the parking lot than the actual appointment. BTW, it’s an hour drive each way and parking was $13.
I guess I’m back on the active transplant list again. I did read that live donor transplants were considered elective surgery and most hospitals are only doing deceased donor transplants. At least when the quarantine is over, we can hopefully start planning the transplant.
Since I had an appointment at UCLA Medical Plaza today, I originally planned on getting lunch at Versailles. It’s a Cuban restaurant that has an awesome garlic chicken dish (menu item #6). When I was at UCLA, we used to come here all the time and everyone would order the same dish. Back then, the half-chicken was $6; now, it’s $16 for the same dish. However, I got out from the UCLA appointment pretty quickly. I only saw the cardiologist for 5 minutes. He asked me a few questions and then said he will write a note recommending that I be taken off the transplant hold list.
Anyway, while I was driving back to the freeway and debating my lunch plans, I decided to drive down Santa Monica Blvd. towards the ocean. I used to go to a Japanese fast food place but haven’t been there in over 23 years. I only vaguely remember where it was but I managed to find the corner plaza and surprisingly, the restaurant is still here. Everything inside looked the same as well. I got my favorite, #1 combo with teriyaki chicken and beef. The price is a bit higher at $8.95 but not by much. The food tastes exactly the same too.
Yummy but a bit salty
I brought the food to work since I needed to stop by and pick up a package. Out of 50 people in our department, there’s only three people here, including me.
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When I was at UCLA and getting food there regularly, the lady at counter thought I was Japanese. She would greet me and say a whole bunch of stuff in Japanese and I understood none of it. I just nodded and said “numba 1 to go” and paid. I doubt it’s the same lady today since she looks young and we spoke in English.
The tech that inserted the needle in my on Saturday tried the same spot today and was unable to hit the blood vessel cleanly. She tried moving the needle around in my arm several times. Good thing I got lidocane before she started poking. She did get some blood in the needle but when she tried to pull some blood out using a syringe, there was a lot of resistance. She ended up pulling out the needle and we just used the chest catheter today. It did look like she picked up a blood clot in the needle.
About two hours into the dialysis session, one of the supervising nurses came by to try sticking my arm again. My arm was still sore from the first attempt but I told him to go ahead anyway. He was also unable to hit the blood vessel so now I’m 4 for 8 in successful dialysis needle insertions. He said the fistula was pretty good sized so I’m not sure why there’s so many misses. At some point, I will need to remove the chest catheter so they have to insert the needle(s) into the fistula accurately.
My dad texted me to pick up some In-N-Out burgers for lunch. The drive-through line was crazy long, probably 30 cars. It did move pretty quick though. I ordered and was out in about 15 minutes. Like Raising Canes, they had several workers in masks take orders in line. Since I didn’t really eat dinner for two days, I got a double-double with grilled onions, well-done fries, and a chocolate shake. For some reason, the fries were super salty so I only ate a couple of fries. I found nutrition information on In-N-Out’s website:
Nutritional Item
Double-Double
French Fries
Chocolate Shake
Serving Size
330 g
125 g
15 oz
Total Calories
670
370
580
Calories from Fat
370
140
250
Total Fat
41 g
15 g
28 g
Saturate Fat
18 g
1.5 g
18 g
Trans Fat
1 g
0 g
1 g
Cholesterol
120 mg
0 mg
110 mg
Sodium
1,440 mg
250 mg
400 mg
Total Carbs
39 g
52 g
84 g
Dietary Fiber
3 g
6 g
<1 g
Sugars
10 g
0 g
65 g
Protein
37 g
6 g
10 g
Double-Double and Fries
I thought the burger was a bit salty but not 1,440 mg salty. Add some fries and the shake, I’m probably at the 2,000 mg daily limit. Likewise for fat. The recommended daily value for saturated fat is only 20 g so either the burger or the shake will put you at the limit. Definitely can’t eat this every day.
Weird. I came into dialysis with a heart rate of 127 but two hours later, everything seems normal again. My heart rate slowed down after about an hour but the nurse listened and said my heartbeat was irregular. Just now, another nurse came by to listen and he said it sounded normal. The last blood pressure reading was 147/76/58; the 58 heart rate is pretty normal for the past 3 months.
Here is the last test from my Kardia EKG. The measured rate was 57 bpm and the rhythm seems pretty regular. I also spoke to the rounding nephrologist but she didn’t seem on concerned. Sometimes fluid or electrolyte levels will cause tachycardia. She said to contact my cardiologist to let them know.
Here is an updated screenshot of the Fitbit app. Heart rate seems to have settled down. Weird.
It’s now about 3:30 am and my heart has been acting weird since noon yesterday. I took more readings using my Kardia EKG and my heart is basically beating twice as fast as normal and skipping beats. Here is the output from the EKG app:
Each horizontal division is one second so my heart is beating at ~120 bpm. It’s pretty evident in the short period above, it skipped two beats. Some of the EKG readings were pretty regular but still fast. My Fitbit is having problems reading the pulse, probably due to the arrhythmia.
You can see the trend is pretty normal on Sunday. Then yesterday around noon, the measured heart rate goes crazy. Sometimes the Fitbit picks up the rapid heart rate, other times due to the skipped beats, it’s still measuring bpm in the 60’s.
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I’m kind of frustrated and disappointed at all this. My heart will probably be like this tomorrow when I show up for dialysis. 50/50 chance they will make me go to the ER. Since there will be lots of sick people with COVID-19, I don’t really want to go. Even if my heart goes back to “normal”, I still need to talk to my cardiologist. I’m not sure what to tell the transplant cardiologist at UCLA on Wednesday either.
As I mentioned in my last a-fib post, this is just another problem in a long list of setbacks. Ever since I found out about my kidney disease, I (and a bunch of people) have been praying for healing. Five years later and stuck on dialysis, maybe God is using a live transplant to “heal” me. However, each time we get close, something comes up. Either my sister’s kidney CT scan, or my friend’s blood pressure. Last November, it seems like we were progressing towards a transplant, I had to go in for heart surgery. Now, in the midst of COVID-19 when I thought everything was on hold, I get the opportunity to be taken off transplant hold. Then two days before the appointment, this happens.
My hope for a normal life is already small yet it’s challenged daily. The only way I can get through some days when my neuropathy is acting up is to focus on a better future. However, I’m getting the feeling that this is my reality and there is no better future. I’m going to be stuck on dialysis for many years, with increasing health complications, until I die.
Usually when I pick up my medication from the pharmacy, I only see the co-pay amount. For some generic drugs, the amount is $0. For others, it could be as high as $30 per prescription. For some reason, I see the pharmacy billed amount in my FHA account. I’ve already used up all the money by early February, but I still see pharmacy claims.
Many years ago, I was diagnosed with one case of a-fib. Initially, the cardiologist prescribed Cumadin to thin out my blood a bit so I don’t get a blood clot and stroke. At some point, I was in the hospital and they switched to Eliquis; I took 5 mg of it twice a day. After heart surgery, they kept me on Eliquis but reduced the dosage to 2.5 mg. So every 30 days I puck up 60 tiny tablets of Eliquis. The billed cost from the pharmacy is ~$500 and my work insurance pays $462.47.
Now I understand it costs a lot of money to research, test, and get approval for new drugs but that seems kind of excessive. If I didn’t have insurance, would I be spending $15/day on the one prescription? What if it did prevent a stroke? How much is that worth? Also, how much does the drug cost in Canada or Mexico? I heard those countries pass laws to limit the cost of drugs, which are then passed on to US consumers. If we ever get universal healthcare in the US, would that bankrupt all the pharmaceutical companies since they won’t have US consumers to bill?
Ugh. My heartbeat is all messed up again. At around noon today, I took a short nap. Since then, my heart rate has gone crazy. Initially I was just looking at my Fitbit and it was showing a heart rate of ~110. I didn’t feel weak or anything like the episode before the heart bypass surgery. I also pulled out the blood pressure monitor and my Kardia EKG. Both gave me a heart rate of 110 to 120. The EKG said I had tachycardia but otherwise normal heart rhythm. I then tried to take a nap around 6:00 pm to see if my heart rate will slow down. As I was lying down, I can hear my fistula whooshing. The rhythm was super weird so I got out the EKG again. I measured several times and it either said possible a-fib or unknown. The rhythm is very irregular. I would hear three or four fast beats, then my heart would skip a beat and continue. Something it slowed down to 70 bpm, other times it sped up to 120+.
Last time this happened, my heart rate was up at 150 bpm. I couldn’t even stand up and ended up sitting/lying down on the carpet in front of my dialysis cycler. This time, I feel okay other then then weird heartbeat. I just walked upstairs from the dining room and feel fine. I’m not sure what to do at this point. I guess I can ask the nurses at dialysis tomorrow.
I have to see a cardiologist at UCLA Wednesday morning. I’m pretty sure if this continues, I’m not going to be able to clear the hold on my transplant. Each time there’s a milestone for my transplant process, something always comes up to block or delay the schedule. Sigh…
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I was taking amiodarone for three weeks after heart surgery. While I was in the hospital, they had to give me amiodarone through an IV because my heart beat sped up again. I stopped taking the medication about three weeks after discharge but it has a very long half-life. Maybe the after-effects of the drug was keeping my heart in check, and the drug has finally worn off. Amiodarone is very toxic and has tons of side effects. I hope I don’t have to go back on the medication again.
Life with chronic diseases 