I got a call from the Cardiac Rehab Program at St. Joseph Hospital. They were asking me if I was interested in finishing up the program. Not really… but I said yes. Evidently they are opening up the gym to 4-6 patients at a time for 45 minutes. You have to wear a mask and maybe surgical gloves to enter. I have 10 out of 24 sessions left to complete the program.
I’m really there because it was required by UCLA Transplant Center. Now that they’ve put me back on the active list but my donor was rejected, I don’t know if I need to finish up. I could do all the stuff at home without the costing me (or my company) anything. I guess I better call UCLA to see if they’re okay with me not finishing the program.
No, stupid woman. It’s a public forum. If you get to ask stupid questions in public, then we get to comment on how you’re an idiot. Of all things to risk your life for… a pedicure. In the comments, she keeps throwing out the strawman of either going out now or staying home forever. No, you can also stay home a bit longer until medical professionals tell you otherwise. I imagine her name is Karen.
Even through there were some incidences of heartbeat weirdness, most of last week has been pretty consistent. Heartbeat was mostly normal at high 50’s bpm. However, this morning at ~7:00 am, my heart started beating fast again. This time, it’s been going at ~110 bpm for about 30 minutes now. I’m not sure what happened. I was lying in bed, either dreaming or hallucinating about a softball game. I then woke up, sat up in bed for a few seconds, and lied down again. I don’t know if it was the rapid heartbeat that woke me up, or it sped up while I was moving around.
My cardiologist said she wanted me to go in for an EKG. I procrastinated since the last incident stopped after about 20 hours. Not sure how long this occurrence will last. If it’s still beating fast at the end of dialysis, maybe I’ll try stopping by their office.
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The pessimist in me is again thinking that once a transplant is looking possible, something will go wrong. I thought this was the case last week but my heart was pretty regular when I saw the cardiologist at UCLA. Now that there’s news California hospitals are performing non-emergency surgeries, something will come up to derail my chances at a transplant. Life sucks.
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As soon as I wrote the above paragraph, my heartbeat slowed down. It’s now at 57 according to the Fitbit tracker. Ugh, what is happening?
Yawn. I just slept about four hour, which is the longest I’ve slept in several weeks. Maybe it was the dialysis clearance shortfall causing all my immediate health problems these past two weeks.
After dialysis, I stopped by to get lunch from a Hawaiian take out place right across the street from the dialysis clinic. I ate some of the food for lunch and quickly jumped into bed since I haven’t really slept for the past 48 hours. I think I was out in under two minutes. I did tell my mom not to wake me when I nap during the day (unless I asked her to prior to napping) since it may be the only sleep I’m getting all day. During the past few days, as soon as I fall asleep napping, she would wake me for lunch/dinner or something else.
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After dinner, I went to sleep again since I was so tired. I managed to sleep from 12:30 am to about 4:30 am. Doesn’t sound great but much better than zero. Combined with the long nap from yesterday afternoon, I almost feel normal. I was going to go into work today since it’s easier to work on my desktop. I have a 30″ monitor and two 24″ monitors, which are really helpful for coding and debugging. Instead, I managed to connect another monitor to my work laptop at home so I have a 24″ monitor, a 21″ monitor, and the 15″ laptop display for working at home.
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I sneaked an another nap from about 12:30 pm to 2:30 pm but the Fitbit tracker did not pick it up. I feel well rested for the first time in a long time. Even though the dialysis clinic extended my session to four hours when using the fistula needle, if we still run at 250 ml/min, the extra time won’t be enough for adequate clearance so I may start feeling bad again. Not sure what the solution is if we want to develop the fistula.
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.
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.
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.
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.
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.
Crap. The nerve pain came back randomly this afternoon like it never went away. I guess I’m glad it subsided for about six hours so I didn’t have to squirm in pain on the dentist chair but I’m very worried at the frequency of these nerve pain episodes. It was barely bearable when it was about once a month. If this is going to be a daily event, I’m dead.
Sometimes walking will help with the pain, usually while I’m walking. I went to the garage and walked about half a mile on the treadmill. I tried going faster than 1.6 mph but got tired quickly so the pace was still 37’50”. The nerve pain only came two to three times while I walked but came back more frequently when I stopped. I took two Tylenol pills already and will try the massage wand again, but not very optimistic.
Ugh! It’s about 5:00 am in the morning and another pain attack just started. This time it’s in my left big toe. I had woken up after sleeping about 2.5 ours and suddenly the pain just appeared. This is the fifth time in about three weeks. I’m not sure what is going on. I took two Tylenol pills but it’s too late. The frequency of the pain attacks are already <30 apart, and the pain is pretty intense. Unfortunately, I have a dentist appointment at 9:00 am (in four hours). I don’t know if I can sit still in the chair for any length of time with the neuropathy pain.
Thinking back, even though the acupuncture appointments didn’t help much with the numbness and tingling, I don’t think I had a pain attack while seeing the acupuncturist. Since the insurance coordination mess-up and COVID-19 stay-at-home orders, I haven’t been seen the acupuncturist for about a month. I think it’s too risky to go at this time but maybe in the future.
I may have to call early in the morning to cancel my dentist appointment if it’s going to be >30 minutes.
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Since the pain point was in my big toe, I took a massage wand and held it there for about 20 minutes. Surprisingly, the pain subsided quite a bit and was gone this morning. Again, not sure if it was the Tylenol or the physical agitation that helped.
Happy April Fool’s Day! Though I think most people are not in the mood for humor. If you told me what life is like today a year ago, I’d think it was a poor April Fool’s Day joke.
I walked some more on the treadmill just now. I walked 0.70 miles at 1.6 mph, which is a pace of ~37′. Still kinda slow but I didn’t get winded. The cardiac rehab center called me today and I mentioned that I was a bit short of breath when lying down. I also told them I was fine sitting up or standing and I had no fever; they didn’t seem concerned at all. I think having a fever is the main symptom so everyone checks for it.
Instead of going outside, I decided to walk a bit on the treadmill. I think I’m afraid of a repeat of Saturday where I almost ran out of steam on a very short walk. My dad was worried that I would get so tired that I couldn’t walk home.
To take it easy, I set the treadmill at 1.5 mph which is a pace of 40’00”. That’s pretty slow but I didn’t want to fall off the treadmill in case I got too tired. I ended up walking 0.61 miles so almost double Saturday’s short walk. I was still a little tired after the walk but definitely much better than Saturday.
It’s about 7:30 pm and I need to eat some dinner. Unfortunately, my stomach is starting to feel queasy again. I hope I don’t throw up again. I ate half a chicken kabob form Panini Grill and felt okay. If I can get dinner down, maybe I’ll walk a bit more on the treadmill later tonight. Need to make sure I’m physically okay in case UCLA wants to test something at the next transplant appointment.
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No luck about throwing up. My stomach felt funny when I went down for dinner so I came back up to my bedroom and took a nap from 8:30 pm to 11:00 pm. At 11:00 pm, I reheated some of the chicken kabob and my mom gave me some chicken soup. After eating about half the chicken kabob + rice, I drank some soup and immediately threw everything up. Judging by the amount of liquids, it looked like I wasn’t digesting anything for awhile. Now I have an empty stomach again.
On the plus side, I felt a little better lying down. Breathing was a bit easier and so has the coughing. Maybe it was just a cold.
I haven’t posted these in awhile. Here is one from last week.
Those were hard fought miles. I think I only went out 3-4 times to walk and each time was pretty difficult. I’m still a bit puzzled about my shortness of breath. My cough is really mild and not much different from the lingering cough I had post-heart surgery. Likewise, I’ve had problems breathing and sleeping for the past few months. It just seems a bit worse this week. Still no fever and no comments from dialysis nurses when they listen to my lungs. I’m not sure I can even get a COVID-19 test without more serious symptoms.
My mom made hot and sour soup and potstickers for dinner last night. The soup was ok; it wasn’t to hot nor too sour. However, the potstickers were filled with pork and I think I still have problems with strong pork flavored food. The first bit was all dough but on the second bite I got some pork. It was just a bit of meat filling but it was enough to send me to the bathroom and vomit out a ton of stomach acid. I haven’t had anything to eat for 8 hours so it was all acid and no food. Yum!
Potstickers or pan-fried frozen dumplings
Between not eating and not sleeping, I’m feeling pretty miserable. Usually I would go out and get some restaurant food but half the restaurants are closed now. I’ve been stuck at home for two week, leaving only for dialysis and short walks. With the mild shortness of breath, I can’t even walk that much so it’s just home and dialysis. Since I’m not sleeping at night, I need to make that up with short naps during the day. Right now it’s 6:45 am and I haven’t slept all night. I would use another vacation day but I have a few calls I need to be on for work so it’s going to be another shitty day.
Life with chronic diseases 