Arm Shrinkage

I know where some of the weight loss I experienced in the past few months occurred. My left arm. I did notice that both arms seem skinnier than before but just now, I realized there was a huge difference between the two arms. There is much more flabby skin near the left armpit, and the circumference of the left arm at various points is smaller than the right arm. That’s kind of weird since I’ve been trying to not use the right arm as much due to the fistula. During cardiac rehabilitation, I didn’t notice the left arm being weaker than the right arm. I’m not sure how this discrepancy came to be.

Trying to find a tape measure…

Location	Left Arm	Right Arm
Wrist	6 3/4	7
Below Elbow	9 1/2	11 1/2
Above Elbow	10	11
Mid Bicep	10 1/2	12

Hmm, it’s actually difficult to measure your arm circumference by yourself. I didn’t measure myself previously but I think my biceps were >12 inches in circumference. The left arm is definitely smaller than the right arm. It’s kind of weird that the right arm gets a bit smaller above the elbow. I’m going to blame the fistula for swelling my arm and veins in the lower arm but 1.5 inch difference mid-bicep is strange.

I feel kind of stuck in limbo. I can’t eat well so I may not be getting enough protein and nutrients. This is leading to a continued gradual weight loss. Even with my dry weight down a few kgs, my ankles are still swollen so maybe there’s excess fluids somewhere? Even if I exercised more, will I pick up muscle mass even if I’m not eating enough? More protein shakes (they suck)? More Nepro? Feels like I’m going in circles with no way to break out other than a kidney transplant and we know how well that’s coming along.

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Heh! I can’t believe I got out of bed to measure my arms and blog about it at midnight. I was kind of busy with work today so didn’t nap very much, probably only from 11:30 am to 1:00 pm. I’m really tired and hungry (skipped breakfast and lunch, and had 1/2 of dinner due to chipped tooth) and need to get up in 4.5 hours.

Another COVID-19 Chart

This one is from the Orange County Business Journal. It shows a seven day moving average for several counties and when the original stay-at-home order from Governor Newsome was lifted. Pretty much 2-3 weeks after the order was lifted, the number of cases start increasing. Orange County is the orange line and kinda goes crazy in early June until mid-July.

*https://www.ocbj.com/news/2020/aug/12/covid-19-cases-down-peak/*

It does appear that we may have been avoid the spike in cases if we continued to stay home, or was better at wearing masks or keeping social distance. I don’t know how people think wearing masks is ineffective when you look at statistics across the world, especially in Asia. Do people really need to be infected and get super sick to believe that this pandemic is real?

Peripheral Neuropathy 8/12/2020

I haven’t post about this in awhile, other to talk about the occasional pain episodes. However, the constant daily numbness is still ever-present. Each time I think about the neuropathy, if feels like it’s getting worse. I can’t blame the amiodarone I was taking early on anymore: it’s been eight months since I stopped taking it. Not sure if the other arrhythmia medicine (Multaq) contributed to the growing numbness, but I was on that for only a few weeks and stopped last month.

I mentioned that I purchased a shiatsu foot and calf massager. The few times I tried using it, the massager seems to make the numbness stronger. That may not be a bad thing since walking also increases the numbness for awhile. I assume it’s the increased blood flow in the the lower extremities. I need to be more consistent to see if there’s any real difference. However, sometimes I feel the numbness seems to be crawling up my legs, especially when I’m lying down. My new endocrinologist did say that anti-neuropathy medication are mostly ineffective and she would avoid them unless the pain/discomfort was overwhelming. I guess it is sometimes but most of the time it’s just there in the background, irritating but not debilitating yet.

Life is Like a Deck of Cards

Tomorrow I turn 52. If you asked me what life would be like in my 50’s when I was much younger, I would have never come up with this scenario. I never ate healthy or got enough exercise but I didn’t have any major health issues when I was younger. I know it’s a results of years of neglect but if feels like all these health issues hit me within the last five years.

When you say the number 52, I immediately think of a deck of cards. Not counting Jokers, there are 52 playing cards in a standard deck made up of four suites. Different articles have different explanations on the meaning of card suites:

Suite	Definition	Age Range
Hearts	Childhood; Love	1-13
Clubs	Youth; Education	14-26
Diamonds	Mid-life; Money	27-39
Spades	Old-age; Death	40-52

I mean 52 is not really old age. In the US, you don’t get a senior citizen discount until you turn 55. But since being on dialysis and looking at all the morbid statistics, it does feel like I’m in the end stage of my life. I’m trying to knock down each health issue as they come up but I get the feeling that I may be overwhelmed soon.

Anyway, if you look at the age ranges, it kind of fits my life until now. It probably easy to split anyone’s life into four periods, but humor me.

Hearts (1-13): This is the period up through middle school. I basically didn’t know anything and just followed my parents around. I was born in Asia but by age 13, was living in Canada.

Clubs (14-26): Education is right. I spent a lot of time in college and finally graduated when I was 27, so close enough. I wasn’t very social in college so it was like hiding out before entering the “real world.”

Diamonds (27-39): I probably made a lot of mistakes during this period but decisions here laid the foundation for the rest of my career. Also got married (31) and divorced (38) during this time. I didn’t think so at the time, but more and more I feel that life has been an empty shell post-divorce. Which leads us to…

Spades (40-52): Looking back, this period was mainly about trying to adapt post-divorce and now, not dying. Even though people keep saying that I’m still “young”, I feel terribly old. There’s also the persistent feeling that I’ve already lived my life, even though I didn’t accomplish anything big, and there not much left.

Usually people have three areas of concern in their life: health, relationships, and finances. I never had any real issues with finances: didn’t have a lot of money but always had enough to live on. The other two areas are a mess though. The health part we all know about.Post-divorce, I had two relationships. Again hindsight is 20/20; both were not right for me and failed. Now I’m too sick and tired to pursue any relationships. Just thinking about all the time and effort I spent dating and getting married the first time tires me out.

So what now? There are no more cards in a deck after 52 unless you count Jokers. Maybe I’m on borrowed time. In the 1920’s, average life expectancy in the Americas was still in the low 50’s. How did people plan their life accordingly? Nowadays, people talk about a “bucket list” of things to do during retirement (I guess before you “kick the bucket”). Sigh… if I was only so optimistic.

Dental Issues Again

I just noticed one of my front tooth has a huge piece chipped off, probably like 1/4 of the tooth from top to bottom. Also, it is a bit dark underneath so there’s probably a huge cavity there too. My dentist did say that he wanted to cap almost all the teeth in the top row of my mouth. At $1,500 per tooth, it’s going to cost a lot but now I have no choice. There is a huge gap between the front two teeth that needs to get fixed. I think the piece broke off when I ate something but what happened to the actual piece? Did I swallow it? It’s weird since the tooth is a bit sore when I blow air across the gap. How come I didn’t notice until I brushed my teeth just now?

These health problems just keep piling on. I have an entire list of stuff to go through. Maybe it’s time to review again since it’s been more than two months.

ESRD: I made several posts recently about waiting for UCLA to make a decision again
Dialysis access: fistula is kind of working half the time; waiting for vascular surgeon to call me back after an ultrasound scan of my arm last week
Cardiac rehab: still on hold but I probably won’t continue since UCLA already cleared me post-heart surgery
Atrial flutter: it’s been over two months since the ablation procedure and heart rate seems stable in the mid-50’s; still have some shortness of breath and some chest pressure but that may be more from the bypass surgery
Peripheral neuropathy: stopped all arrhythmia medication, including Multaq; also did not restart acupuncture; bought a large shiatsu foot and calf massager to see if that will help
Back pain and pressure in chest: about same; still difficult to sleep on left side
Minimal urine production: almost no urine output; maybe 50 mL per day?
Insomnia: still not sleeping more than 3-4 hours per night; just starting working part-time so taking lots of short naps during the day
Dental issues: dentist wants me in for teeth cleaning every three months; still fall asleep often without brushing first; see above for continued issues
Endocrinologist: saw new doctor; she prescribed a new (and expensive) drug since she wasn’t comfortable that I was not taking any blood sugar medications
Lump in left leg: no change
Constipation: not noticeable anymore; having pretty regular bowel movements
Ophthalmologist: need to make appointment; the one year exam deadline passed during the pandemic shutdown; probably also need to see the optometrist for new glasses again

Right now, the UCLA thing is taking up all my attention since we wanted two years and it seems we’re back exactly where we were. I’m very upset that UCLA deferred making a decision and I had to suffer two years of dialysis, including failed peritoneal dialysis which probably messed up my health even more. I know they’re being cautious but it’s not like I have a hangnail. A kidney transplant is night and day difference for a dialysis patient. My quality of life could have been so much better if we did the transplant two years ago. Seriously, I can’t believe were at exactly the same place we were two years ago and they still won’t make a decision.

It’s hard to have hope when looking at that huge list of problems. I don’t think I can work through everything in my remaining lifetime. Living with dialysis is already hard, plus trying to stay healthy enough for a transplant while your body is trying to kill you. Then I go and almost break a tooth. So many things to worry about and we’re basically stuck at home trying not to get infected with COVID-19.

I”m tired and just rambling now. It’s 12:34 am and time for sleep (for a few hours anyway). First priority is getting the tooth fixed before it gets any worse.

Foot Massager – First Use

I moved the massager upstairs to my bedroom. My room is not that big so the massager is quite noticeable since it’s pretty large. Here is a photo with my iPhone 8S for size comparison:

It took some reading but I think I have the orientation and usage figured out. It’s still not ideal for calf massages since you’re supposed to put the massager on a bed or ottoman and let the weight of your lower leg push down on the massager. Being seated, I don’t think there’s enough pressure against the rollers for a good massage. However, the massager weighs a ton so it’s not that easy to move around. Even switching from foot to calf mode in the same spot sucks.

I tried it for about 15 minutes each on my feet then calves. You definitely fell more of a tingling in your feet afterwards. It actually makes the neuropathy numbness worse. Hopefully it’s just a reaction from improved blood flow and I’ll get used to it after more use. No pain yet after one day so hope that lasts too.

Cloud Massage Foot Massager

The massager arrived early. It came in a huge box this afternoon. Even though I bought it from another online store, it was fulfilled by Amazon anyway. I think in the near future, all online shopping logistics will be handled by a few companies, with Amazon being the largest. The unit weighs 24 pounds so it was hard to lug up the stairs. Then I had to bring it downstairs since we don’t have room in any of the bedrooms for it yet.

It looks okay. I plugged it in and tried it on my feet and calves. The instructions and the box photos do not match however. I wanted to make sure the massager was orientated properly but it appears the manual was written in China, and the English structure was a bit weird. I think I’ve figure it out, though for calves, the instructions want me to put in on a bed or ottoman. Did I mention 24 pounds?

I think I’m going to move it to my bedroom after clearing out some space. For diabetics and those with neuropathy, they suggest 2-3 sessions of 15 minutes. That means I need something to do while sitting there. Our living room is kind of sparse whereas all the electronics stuff is in my bedroom. I hope this works and actually helps with my neuropathy pain.

Health and Quality of Life

I was writing this at the bottom of the previous post but thought it was different enough for a separate post.

I definitely feel that my health and quality of life is a lot worse since the heart bypass surgery last November. Right after surgery, I thought that I could get through the 8-12 week recovery period, and pick up life where I left off, even with the pending kidney transplant. Well, in mid-March with the COVID-19 pandemic, all that has changed forever.

Personally, I think my problem started with my experiment with peritoneal dialysis. In hindsight, I made the wrong choice back in April of last year. I decided to go with PD instead of getting a fistula and continuing with in-center hemodialysis. I don’t think it affected the need for bypass surgery since that was caused by years of bad eating and no exercise. However, since PD failed to work for the last two months of treatment, my blood really wasn’t getting cleaned. The blood toxicity probably caused some other health issues or at least made existing problems much worse. My urine output went from close to 2 liters a day down to zero, which is causing havoc with my fluid balance now. I also feel that my energy levels are a lot lower than before, plus the numbness in my feet due to peripheral neuropathy is a lot more intense now too.

At first, I thought working from home for a few weeks is cool, since I was just getting used to driving 40 miles to and from work again. However, as the pandemic got worse, and even healthy co-workers started staying at home, I felt like I was back in recovery: stuck at home with nowhere to go. Before, it was because I was physically unable to move around. Now, it’s the fear of getting COVID-19 and getting really sick or dying. Unlike heart surgery recovery, where you can feel the physical improvements and there’s an end-date, this COVID-19 mess won’t end unless there is a widely available vaccine. This could be soon or next year or never. I can’t imaging life if we never come up with an effective vaccine and millions of people like me are stuck at home for the rest of their lives.

Right now it’s hard to imaging the future. I go to dialysis three times a week, and sometimes I go to the mall parking lot to charge my electric car. I also go and get take-out lunch a few days a week but the rest of the time, I’m effectively locked up at home. That’s why I went to pick up dim sum this past weekend. It seemed like a low risk opportunity to get out of the house for an hour. Since the local Supercharger is much more available these days with less people driving, I should go out for more aimless drives rather than sit at home.

Sigh. In the end, the near future is dependent on the vaccine and if I can get a live donor kidney transplant from my sister. If the transplant happens, then the need for dialysis goes away (hopefully for many years). However, I still will be high risk due to all the post-transplant medications. If UCLA rejects my sister again, then I have to decide on whether to transfer my time to the Mayo Clinic in Phoenix, or stay as it for the next 5-6 years waiting for a deceased donor kidney. When I first started dialysis, I though it was temporary, and would last only a few weeks or months. When I switched to PD, I thought I was done with hemodialysis and would stay on PD until the transplant happened. Now that I’m back on hemodialysis and with my fistula not working well, I don’t know what to think anymore.

You never want to live in the past, but life was pretty good ~10 years ago. I just turned 40, started a new job, none of these serious health issues were apparent, plus traveling a lot and “dating”” a girl in Beijing. A short 10 years later, it’s all turned to shit.

All this time, I kept wondering what God’s role was in all this. Admittedly, I had stopped going to church when the last one I attended self-imploded. I spend a few years looking for a church, then ending up at the one I’m attending currently four years ago. For the first two years, I was pretty gung-ho. The church is more charismatic on spirituality than my previous churches, and I got all caught up believing that God will cure me miraculously. I think it even affected some of my dialysis decisions. “Why make long term dialysis plans when God’s going to cure me any minute now?!” However, when weeks, months, and years went by with no supernatural signs and wonders, I started to doubt and sleep in on Sundays (skipping church service). I still don’t know what to think about spirituality and healing in my life. I send group texts to my cell group letting them know about hospital appointments and transplant news. In return, they all reply with promises to pray. Together with my parents’ church and my old church in the South Bay, there’s probably a lot of prayer going on. Does that even matter to God? Should it?

This post has become way longer than I originally thought. The pain in my foot seems to have subsided somewhat. Maybe it’s one of those rare cases where the Tylenol does help. It’s past midnight; I’d better try to get some sleep before dialysis or I’m going to pass out on the chair again.

Good night. Hope there is good news from UCLA soon.

Exercise Triggered Neuropathy

Ugh. I’m starting a lot of posts with this word.

I was feeling pretty good tonight. I got over 5 hours of sleep today, broken up into several naps. I had a decent dinner, and my chest pain/pressure wasn’t bothering me too much. Anyway, I walked for about 20 minutes on the treadmill for about 0.6 miles. At the end, I started feeling a sharp stabbing pain in my right foot, right below the inside of the ankle. I think this is the first time that exercise made my neuropathy worse, or even appear out of nowhere.

I used to think that exercise helps relieve the pain somewhat. I did notice a huge wave of numbness in my legs/foot when I stopped walking on the treadmill. But exercise triggering the neuropathy pain? I didn’t expect that.

It’s been only 10 minutes and the pain is already excruciating. I took two Tylenol pills already but likely it won’t do anything. I guess no sleep tonight. I just hope it subsides by the time I have to go to dialysis. I can’t imagine sitting for four hours while feeling a constant stabbing pain in my foot.

I hate my life.

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Let me reiterate that this was a problem that used to appear every month or so. I can deal with one night of no sleep and sharp pain each month, though it was pushing my pain tolerance. Now that this seems to occur once every few days, plus my recent erratic sleep patterns, I am exhausted all the time. I was trying to get some work done around noon today but I kept nodding off in front of the computer. After about 30 minutes of this, I finally went to take a short nap and woke up at around 2:30 pm. Luckily, I did not receive many emails or text messages from work.

More COVID-19 in Orange County

Our work site is up to 102 cases of COVID-19, though that’s technically in Los Angeles County. In Orange County, it does seem the number of new cases is going down since Governor Newsome re instituted the stay-at-home order. Again, there seems to be some discrepancies depending on where you look:

*From: Orange County Health Care Agency*

Again, it’s weird that the total numbers tie but the daily data in the charts are totally different. Both definitely shows a downward trend after the peak in early July.

Since there are differences and I’m not sure what are the criteria for reporting a positive case, we can look at hospitalization data. This is from the OC Health Care Agency:

*Total hospitalization numbers include ICU patients*

Assuming the hospitalization rate is fairly constant for the population, then this is probably better data to look at since it’s reported by hospitals and includes only those with serious symptoms. Again, there seems to be a huge increase mid-June after California relaxed restrictions at the end of May, and a decrease recently. Hopefully, people will be patient this time (Orange County Supervisors and school openings) and not rush out again causing another spike in cases, hospitalizations, and deaths.

I’ve already visited the DMV so anyplace else seems less risky in comparison.

Latest Weight and Body Fat

I have an original Fitbit Aria scale which is connected to my wifi network at home. Every measurement is sent to Fitbit’s server and the app pulls the data to your phone or PC each time you log in. All the weight plots I post are from the data that the scale collected over the past year.

Just now, I weighed in at 86.5 kg and 15.0% body fat. The body fat is measured by sending up a small current up one leg and measuring your body’s electrical resistance across the pelvis and down the other leg. I don’t think it’s that accurate but as long as the scale is consistent, it should be okay for looking at changes over time. Also, this is why the scale can’t measure body fat when I wear socks.

By looking at some random chart on hte Internet, it says I am between lean and ideal. That’s probably not right. Lean is the last word you think of if you see me, though I have lost a lot of weight since the heart surgery. Also, my BMI (probably an even worse measure) says I’m still overweight at ~27-ish. I think to be accurate, you have to get measured with fat calipers or go into a water displacement tank.

*Body fat % readings from Fitbit Aria scale*

The above is a chart from Fitbit with body fat % for the past year. Whatever the number is in real life, the resistance in my legs have gone down over time. It kind of tracks my weight loss over the same time period. The big weird drop was right after heart surgery when I was stuck in the family room living off the recliner sofa. Didn’t really weigh myself that much at the time.

Blood Pressure Fluctuations

My blood pressure (BP) has been pretty unstable since the ablation procedure. Some mornings I would get a low reading around 110/70, and other days I would get something around 180/100. If I take my morning BP medication when the readings are low, invariable I would be dizzy while walking into dialysis. However, since some of the drugs get filtered out during dialysis, my BP would usually rise during the session instead of dropping as fluid is removed from my bloodstream.

On Thursday morning, the BP reading was kinds of normal so I skipped taking the BP medications. My BP ranged from 120/70 to 180/100 during the course of the dialysis session. Prior to going to see the endocrinologist, I think I measured about 156/90 at home so I took the two morning pills before going to the doctor’s office. Imagine my surprise when the assistant measured a 186, followed by a 201. I told her that due to dialysis, my BP numbers are very unstable, and I have nephrologists and cardiologist looking at it. I was surprised that the endocrinologist didn’t mention anything during an otherwise very thorough office visit. She did end up calling me later to tell me she wants to discuss my BP. I hope she doesn’t issue me any more super expensive medications. I already have three other doctors prescribing BP meds and it seems none of them coordinate.

Trouble Sleeping (updated)

It’s just past midnight on Saturday and I can’t sleep. The main issue is the peripheral neuropathy again. No pain this time but the numbness is overwhelming. It’s been slowly getting worse over the past several months, but since I was preoccupied with my heart issues, I haven’t blogged about it that much. The numbness is pretty constant and goes about a quarter way up my calf. Since I still have some edema, it does feel a bit bloated, like the skin is being stretched. It’s probably just false feeling; if I can’t feel pain, I’m not going to be able to feel anything subtle.

My back is also a bit sure. I’ve staring at my iPad too long while sitting on my bed. Add the constant chest pain/pressure when I lie down, it’s hard to relax and fall asleep. The problem is that I have dialysis in about 5 hours so I need to get some rest. I’ve been kinda falling asleep on the dialysis chair and that’s definitely not good for my back.

I read online on some websites that dehydration can make neuropathy worse. I think the dialysis center is drying me out but the edema in my ankles say otherwise. I asked my new endocrinologist about medication for neuropathy and she mentioned gabapentin and Lyrica. She said both are not good drugs for someone with kidney issues. So unless the pain is unbearable, she doesn’t like prescribing those type of drugs.

Sigh… for some reason, I always had the thought that modern medicine can fix everything. Then I find out there are lots of chronic conditions that have no cure, and patients basically suffer their entire life with these conditions.

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Update: 8/1/2020

So it”s about 4:00 am and I didn’t get any sleep this morning. Okay, maybe 30 minutes here and there. At 3:30 am, my big to on my left foot started hurting. As I mentioned before, the neuropathy pain episodes are coming fast and furious. Usually I get a few weeks of respite between attacks but now it’s days. I still think it may be dehydration from dialysis lowering my dry weight, but it could be just coincidence. What has helped relieve the pain sometimes is walking or just kicking out my leg violently. I think that moves the blood down my leg to get a bit more circulation. I found this on Amazon:

*Cloud Massage Shiatsu Foot Massager Machine*

The way it’s designed allows for both foot and calf massage. I also found that sometimes massaging the calves will cause nerve response in my feet. It has a 4 1/2 star rating with over 1,000 reviews. However, it does cost $250, though if it gives me some relief, it will be totally worth it. I’d pay $100k for a machine that stops the neuropathy numbness and pain.

At this point, I may as well stay up and prepare for dialysis. Not going to get any sleep in the next 30 minutes. I guess it’s napping in the dialysis chair again. At least it’s Saturday and there won’t be any doctors or staff calling on us patients.

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Initially, Amazon showed Prime delivery for tomorrow if I ordered with the next 15 hours with one-day shipping. I decided to wait until after dialysis to make the decision since it was $250. When I just checked again, the delivery date has moved to Friday, August 7th, and there was no explanation given. It still had the Prime tag so delivery should have been Tuesday at the latest. I was going to order anyway but decided to search online for other stores. One of the search results was Vybe Percussion which sold percussive hand massagers. They also carried the same foot massager with free shipping, also delivering on August 7th. However, they also had a coupon code for 20% and the code worked. So instead of $250, I ordered the massager for $200 (plus tax). I guess you should always do a quick search before buying anything at Amazon (or Costco) since sometimes there are better deals to be found.

Hopefully it works, even slightly, since $200 is still a lot to waste if it’s ineffective.

Lowest Weight Evah!

I just weighed myself before breakfast today. I really didn’t eat much yesterday after dialysis so my weight actually went down some more. Ignoring the fact that measurements are from two different scales, and a different change of clothing, I weighed only 85.7 kg. That’s only 189 lbs. Less than a year ago I was at ~240 lbs so I lost about 50 lbs in 8 months. The weird thing is that my ankles are still a bit swollen from edema. They look fatter now than when I was weighing >200 lbs.

My mom is worried that I’m not getting enough nutrition, and somehow that will disqualify me from a kidney transplant. I’m not even thinking that far ahead since UCLA keeps rejecting my donor candidates. Also, the monthly labs at dialysis tests for albumin or protein levels in blood. My result was 4.3 with the normal range being 3.5 to 5.0. I’am still pretty tired though, but there may be lots of other reasons for that instead of malnutrition.

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Here’s a chart from Fitbit for this YTD:

Busy Dialysis Session

Today was a petty eventful day at dialysis. Nothing bad happened but just a lot of stuff came up. Since the one “reliable” tech was still out on medical leave, my nurse just plugged me in using the chest catheter. After about 30 minutes, one of the other senior nurses came by to try her luck. She managed to hit the blood vessel on the first try for both needles, but sadly the arterial one stopped working as soon as she hooked me up to the dialysis machine. I think when I moved my arm to a lower position, it changed the geometry enough that the needle wasn’t getting enough blood flow. The venous needle worked though so they used the catheter to pull blood out, and return it through the fistula. I guess one working needle is better than none.

I also came in at 88.9 kg. which is the least I ever weighted for dialysis. Since the rounding nurse lowered my dry weight to 87.0 kg on Tuesday, it meant we still had to pull about 2 kg of fluids out. I ended up at 86.7 on the way out of dialysis. I also found out that I’m only 5’10” and not 5’11” so any BMI improvements due to weight loss is offset by the shorter height. I can’t win…

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Almost forgot. The dialysis nutritionist came by to give me a phosphorus quiz. I guess they’re doing an education program since I overhear a lot of patients have problems with their phosphorus levels. For the first two years on dialysis, I was usually slightly above the 5.5 mg/dL upper limit. When I was on peritoneal dialysis, that number shot up to 11 since the process wasn’t working. Recently, I’ve been just below the upper limit, and actually got a 4.6 during the last labs on 7/16. If you are consistently high, in the 7-8 range, that may disqualify you from a kidney transplant. How ironic.

Anyway, I got 8/10 on the quiz. Some of the questions were poorly worded but I’ve read a lot online about phosphorus and it’s effects on your body. The nutritionist went over the answers and her spiel anyway. Her voice is really loud so each time she talks to a patient, you can hear her everywhere in the dialysis center. She even pulled out a diagram on how parathyroid hormone is regulated in the body.

*The chart I was shown wasn’t this complicated but it was similar*

Walking 7/28/2020

Weird. My shortness of breath feels worse these couple of days but I was able to walk okay on the treadmill. I just walked about 0.75 miles in a bit under 30 minutes. Not too fast but didn’t run out of breath though. I hooked up my sister’s old iMac in front of the treadmill so I can stream Netflix or files from my video server to make the time pass faster.

The shortness of breath is still bothering me quite a bit. It’s especially noticeable when I lie in bed flat on my back. In addition, I can hear the sternum move during each breath. It’s been 9 months since the open heart surgery. The bone should have fused a long time ago but it still feels loose.

Peripheral Neuropathy 7/28/2020

Ugh, I’m tired of writing about this but the attacks are coming in almost daily. I was at my limit when the pain episodes were occurring once a month, but now it’s almost non-stop. The pain from 7/26 subsided this morning but it was enough to prevent me from sleeping that much. As a result, I was super tired during dialysis. I think I fell asleep at 6:00 am and didn’t get up until 8:30 am. That session felt like the fastest ever since I slept through most of it.

Since my feet felt better, I took a short nap at around 1:00 pm and didn’t get up until almost 6:00 pm. But as soon as I got up, another pain site popped up on my left foot, a bit higher up on the insole than the case on 7/23. I said before that I didn’t want more medication since I’m on so many of them now but I’m beginning to change my mind. I can’t stand this anymore. Worse, this probably won’t improve with a kidney transplant since it’s the result of prior uncontrolled diabetes. Even though I have my blood sugar well controlled now, it won’t matter.

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Double ugh. Many websites say to keep well hydrated to avoid or reduce neuropathy. Well, that sucks for dialysis patients, especially when my nephrologist keeps reducing my dry weight. It was reduced to 87.5 kg last Tuesday, and today, it was reduced further to 87.0 kg. I have been leaving the dialysis center at ~87.5 kg lately, the lowest weight for me in recent memory. Is this just coincidence or am I drying out, causing more instances of neuropathic pain?

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This is killing me. The pain switched from the left foot to the toes of the right foot suddenly. The left foot pain was more prolonged but not very painful. The right foot pain now is super painful and spread across the bottom of three toes. Ugh, I can’t stand this anymore.

COVID-19 in Orange County per The New York Times

Here is a chart for number of cases in Orange County from The New York Times on Google. It looks somewhat different than the data shown by the Orange County Department of Health. I zoomed in to show May to July.

I think both are showing a downward trend in the past few weeks but the data points seem completely different. Yet, both websites show the exact same number of cumulative confirmed cases as 34,646. How can the totals be the same when individual days are totally off? For example, I’ll pick a random date of July 15, 2020. OC Department of Health shows 555 cases, while NYT shows 911. That’s a huge difference. Who is right and why is the other source so different?

Reddit r/dialysis

There seems to be more and more messages of despair and hopelessness on the r/dialysis subreddit. Before, it was mostly people asking more experienced dialysis patients for advice, but recently, there seems to be a lot of posts where the OP is talking about stopping dialysis or committing suicide.

I think the combination of going to dialysis and the recent COVID-19 outbreak has really stressed out a lot of patients. Admittedly, dialysis was already a pain-in-the-ass, having to go to the clinic three times a week. However, the pandemic adds a whole new level of risk to everything plus social isolation. My social worker kept stressing the importance of continuing to work if possible, and maintaining my support groups. Well, now I’m working from home everyday, I don’t get to see my co-workers. I have co-worker I’ve known for 9 to 20 years, and they do act as social support sometimes. My cell group at church hasn’t met in person since March, though we “meet” weekly on Zoom. It helps, but nothing like sharing a meal with friends. I can see how this environment can get super depressing really quickly.

I’m not sure the public knows the fear and isolation affecting dialysis patients now. Since nobody seems to know for sure, the fear is that any exposure to the coronavirus will kill you so you stay away from everyone and everything. I still get take-out food but the places I visit are either curbside pickup or drive-thru. I go to the supermarket/pharmacy on rare occasions but always with a mask and lots of sanitizer. Even with a vaccine coming out soon, I think life for dialysis (and other seriously ill) patients have permanently changed for the worse.

Walking 7/26/2020

I went outside for a short walk just now. I walked only 0.3 miles at a pace of 30’13”. It’s pretty slow but I made it around the small block without having to pause. The last time I went outside to walk the same short path, I had to sit down twice to catch my breath. I guess it’s an improvement.

Foot is still hurting from the neuropathy though. It was okay when I was walking but I was concentrating on not passing out. I already took two Tylenol tablets for 1000 mg of acetaminophen but it doesn’t seem to have any effect. I still have some codeine that I’ve saving for when I need to visit the dentist again.