2020

After today, I’m 4 for 6 on fistula usage. On Thursday, my nurse tried to insert the needle in my arm but did not draw any blood. She is very much a one attempt per needle nurse so she pulled the connector out, put a band-aid on it, and just used the chest catheter for the entire session. Today, a different tech stuck the needle in my arm then made several adjustments with the needle until she was able to hit the blood vessel. Since she did not use any Lidocane, it hurt a lot while she was digging around with the needle. Even afterwards, there was a dull pain at the insertion point for the entire session. Once again, they ran the machine at only 200 ml/min so I’m pretty sure I’m not getting enough dialysis. Is every session going to be like this until the fistula matures more? I can’t imagine sticking two larger gauge needles in at the same time when one thin needle is already hurting.

*I’ve been using the 17Ga needle so far (thinnest)*

500

WordPress tells me this is post #500 for this blog. When I started posting back in June of 2019, I was planning to do weekly posts, documenting the struggles I was having with peritoneal dialysis. However, with the heart bypass surgery in November and subsequent three months of recovery at home, I had lots of time to write and lots of stuff to complain about. I guess I got into the habit of communicating way too much online since there’s no one to talk to. Now it’s even worse with the COVID-19 quarantine. Previously, I was at least spending three days at work work co-workers and a few events weekly at church. Now I’m stuck at home and the only people I talk to are my parents and dialysis clinic staff.

Work Schedule

I read a study that said the rate of employment for dialysis patients was as low as 19%. Looking at the patients at my dialysis clinic, that number seems believable. A lot of the patients are much older than me and wheelchair bound. There aren’t many young patients; maybe they are all doing dialysis at home.

When I was on hemodialysis the first time, my dialysis schedule was T/Th/Sat from 1:00 pm to 4:30 pm. I typically worked remotely from home Tuesday and Thursday mornings, then went to dialysis after lunch. This was pretty convenient since I got most of my work done in the morning and delegated the rest to my staff for the afternoon. I didn’t formally tell HR about missing work two afternoons per week but took occasional vacation time to make up the difference. Fortunately, I’ve worked for the same boss since 2000 so he knows I’m not a slacker and was supportive of my schedule.

Fast forward two and half years to now. I’m still at the same company but have different job responsibilities that are less task based. Also my dialysis schedule changed to 9:00 am to 1:00 pm so I can only work remotely after dialysis. It’s been much harder to work Tuesdays and Thursdays this time so I’ve taken a lot more vacation days. I still have about 180 hours left which is ~22 days. If I take two days each week, that will last me another 11 weeks during which time I will accrue an extra week, so a total of 16 weeks or 4 months. I’m hoping that I will have had my transplant surgery and recovered by August so I won’t have to go to part-time status.

In the meantime, I’m still struggling to be productive at home. It’s hard since my projects were not well defined and it’s hard to communicate over the phone. In addition, we’ve banned Zoom from work meetings and currently have no video conferencing or screen sharing capabilities.

Fistula: Third Use

The dialysis clinic switched technicians today. They usually rotate the nurses and techs every so often but I can’t figure out their schedule. Anyway, I think my nurse is still out so one of the supervising nurses was substituting. Right at the beginning of the session, one of the techs came over and stuck a needle in my arm. Initially there was no bloodflow but she managed to move the needle a bit and struck the vein. They didn’t use Lidocane this time either so it hurt going in and sporadically during the four hour session. The nurse initially set the flow rate at 200 ml/min but increased it to 220 ml/min. Again, that would mean I was getting less dialysis than necessary since I was barely clearing at 350 ml/min. They did manage to remove 2,600 ml of fluid though.

The nurse asked me to put an ice pack on my arm at home. There was light bruising from the last session. Between surgery scars, Sharpie drawings, needle marks, and bruising, my arm looks like a mess.

Disposing PD Supplies

My dad and I finally disposed of my remaining peritoneal dialysis supplies. I stopped PD after my heart bypass surgery in November since it was providing inadequate dialysis clearance. I had about 20 boxes of dextrose solution leftover, as well as tubing and connector caps. The dialysis center would not take any of it since they can’t guarantee the sterility of the products at my house so all of it went into the trash.

For the dextrose solution, I had both 6,000 ml and 3,000 ml bags various dextrose concentrations. I briefly considered listing them for free pickup on Reddit or Craigslist but I figure during the COVID-19 pandemic, no one would want to come to a stranger’s house to pick up extra dialysis supplies. We ended up spending about two hours unboxing and draining the solution into my bathtub. The wrapping and plastic bags took up three whole trash bags to dispose. It’s a total waste but no one wants to screw around with medical supplies.

With all the excess supplies gone, I guess I can finally close that chapter of my life. Hopefully I can say the same thing about hemodialysis soon.

Take-Out Lunch: Raising Cane’s

Last Tuesday after dialysis, I decided to get lunch at Raising Cane’s in Tustin. I used to go there about once a month to get lunch on Sunday but haven’t been there since the heart surgery. At first glance, I should be staying away from fried chicken tenders and french fries, but I had a craving all day Tuesday so I stopped by and got a Box Combo. Instead of ordering at the drive-through board, they had two employees standing at the side of the drive-through lane to take orders. I paid by credit card, making sure I wiped it down with hand sanitizer after getting it back from the cashier. I gave my parents the Coleslaw and Texas Toast but ate most of the rest. It was yummy. Here is the nutritional information:

Nutritional Information	Box Combo	Sweet Tea	Texas Toast	Coleslaw
Calories	1,300	140	150	100
Fat Calories	660	0	45	60
Total Fat	73 g	0 g	5 g	6 g
Saturated Fat	11 g	0 g	1.5 g	1 g
Trans Fat	1 g	0 g	0 g	0 g
Cholesterol	170 mg	0 mg	0 mg	5 mg
Sodium	2,120 mg	15 mg	290 mg	310 mg
Carbohydrates	100 g	36 g	24 g	11 g
Sugar	17 g	36 g	5 g	7 g
Protein	60 g	0 g	4 g	1 g

Raising Cane’s website

In hindsight, it wasn’t the healthiest lunch. There is a lot of fat and sodium. Even if you remove the Coleslaw and Texas Toast, it still ~1,600 mg of sodium. I guess if I didn’t eat too much for breakfast and dinner, it’s probably okay. If you look at the individual chicken finger, it’s only 180 mg of sodium each, or 720 mg for all four. A lot of sodium is actually in Cane’s Sauce which appears to be a spicy ranch dressing. Maybe I’ll just get the 3 Finger Combo next time.

Take-Out Lunch: Fortune Cookie

My parents ordered lunch at a Chinese restaurant in Orange called Fortune Cookie. I think we’ve eaten there several times before the pandemic and the food was okay. The decor was definitely nicer that your typical Chinese restaurant will nice upholstered booths. They ordered three dishes: spicy/cashew chicken, braised string beans, and chicken lettuce wrap. It was probably the worst tasting restaurant Chinese I’ve had in a long time. The string beans were not seasoned and the stir-fried chicken dish had stinky bamboo shoots. Afterwards, my dad called to ask them what’s up and they said their main chef skipped work due to the coronavirus. I guess they had their line cooks make the food and it shows. The restaurant said they will cook another dish for us for free. Not sure if my dad took them up on it since it will probably taste just as bad.

Social Distancing

Now that it’s been three weeks since we were ordered to stay home, life is not that different for me. When I was on peritoneal dialysis, I had to be hooked up to the cycler for 10 hours each night. Since it took about an hour to connect and disconnect, and about an hour for the midday manual exchange, about half my time was spent on dialysis. Since I was working full-time and commuting, that took the other 12 hours. I wouldn’t have time for much else. Even when I on hemodialysis previously, I was tired all the time so I slept whenever I had free time.

With the current social distancing, it’s not so different. I just got my Google location summary for March and I only visited three places: home, work, and dialysis clinic. For April, it’s going to be just home and dialysis. Again, that’s not so different from my sad life prior to COVID-19. I read that even though dialysis keeps you alive, it’s not great. Your blood is still pretty toxic which means your body is not operating at 100%. Almost everything I read about kidney transplants is that patients fell much better right away. I hope I can get a transplant while I still have a life to enjoy.

Walking 4/3/2020

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.

Peripheral Neuropathy Pain 4/3/2020

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.

Fistula: Intermittent

Since the tech that put the needle in my arm Tuesday is going on vacation, the had another tech try and stick me. She was unable to hit the vein so they’re going to try again later. No lidocaine this time either and it hurt quite a bit. Maybe I need to wait, though everyone at the dialysis clinic wants to use it ASAP.

There’s a older Asian woman next to me getting hooked up and I guess the needles are hurting too. The tech was asking her if she wanted lidocaine. When they stuck me earlier, the tech said the would rather not use lidocaine since it puts an air bubble in the vein and makes subsequent needle insertions harder.

Also, this is the second day in a row where there’s no mask in my supplies bag. I’ve been wearing used surgical masks. Maybe I need to bring my own from now on.

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After about an hour and a half, the tech that poked me Tuesday came back and tried again. I think it hurts a lot less if you hit the vein instead of arm tissue. He had to stick the needle almost perpendicularly at first to get at the vein. Anyway, it ended up working and they set the flow rate at 250 ml/min, a small increase from Tuesday. The nurse said they were drawing blood out of my arm and putting it back through my chest. Usually the needle sending cleansed blood back will hurt a lot more if they miss the vein and have blood fill up the tissue around the vein. Great.

*Photo from today, even though it looks like the photo from Tuesday*

Walking 4/1/2020

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.

Fistula: First Use

About two hours into my dialysis session, one of the techs came by to try out my fistula again. He tried about two weeks ago and got nothing. This time, he was able to hit the vein. However, he didn’t use lidocane this time so I felt every millimeter of the needle going into my arm.

It’s only one needle for now so they disconnected one of the tubes going to my chest catheter and connected it to the fistula tubing. I don’t know which direction the blood is flowing. They also set the flow rate for only 220 ml/min, which is a lot lower than my usual 350 ml/min so I probably didn’t meet my clearance today. There wasn’t a lot of pain; it’s like having an IV needle stuck in you. I hope it doesn’t get worse as they move up in needle size.

After the session ended, the nurse pulled out the needle and put a piece of gauze on the needle site plus a lot of tape. I held the gauze + tape for about 10 minutes then they put more tape over the site and told me not to remove it until 8:00 pm. They also gave me some gauze and tape in case I start bleeding when removing the dressing. Wonderful.

Walking 3/30/2020

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.

UCLA Transplant Center Appointment

I got a call from the assistant transplant coordinator to schedule an appointment with their cardiologist. She asked me on the phone whether I was okay going to UCLA or if I wanted to wait until later. I’m traveling to my dialysis clinic full of people 3x a week so a visit to UCLA won’t be too scary. I’m surprised at the call though since everything is shut down due to COVID-19. Are they still proceeding with kidney transplants? I haven’t finished my cardiac rehab program; maybe they saw my medical records and determined it was good enough? Anyway, the appointment is in about two weeks.

Fitbit Weekly Recap 3/23 – 3/29

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.

“Death Before Dialysis”

I just read a r/dialysis post on Reddit. The poster thinks he needs to start dialysis within 12 months and is considering suicide instead of dialysis. It’s a bit melodramatic but I can kinda understand how he’s feeling. In the ~3 years I’ve been on dialysis, there have been times when I thought about giving up. Usually it’s when we hit a snag on the latest transplant plans. It was very disappointing when UCLA told my sister to wait two years before being re-evaluated as a donor. When you have to go to the clinic three times a week, two years is a long time.

However, humans are very adaptable. Dialysis just becomes something else in your daily routine. Sure it sucks, but you keep going because it’s a small price to pay to stay alive. Even when I was on peritoneal dialysis, it was close to taking up 11 hours a day. That’s almost half of my life just trying to stay alive. I still did it for six months until my abdominal membrane failed me.

I guess it depends on what else you have going in your life. The Reddit poster said he can’t face telling people that he’s responsible for his kidney failure due to uncontrolled diabetes. I think this is basically what happened to me too. However, the problem is not with other people; you need to come to terms with your past decisions and forgive yourself. Sure there are lots of regrets but you need to decide how to move forward.

I was going to post a reply since the message was pretty new when I read it. When I got to my computer, there were already 44 replies. Most of what I had in mind was said by someone else so I didn’t write anything. As I posted before, the hope of a transplant is the main reason I keep this up. If this COVID-19 pandemic lasts for months or years and transplants are delayed indefinitely, I don’t know what I’ll do.

Throwing Up Dinner

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.

More Price Gouging?

Since I’m a bit short of breath lying down, I thought I could get a oxygen saturation sensor to see if there’s enough oxygen in my blood. I know they make portable ones since my primary doctor uses one when I go to her office. The first place I looked is Amazon and I checked price history on camelcamelcamel.com. This is another item that seems to have a thousand cheap Chinese copies but none of them are cheap anymore. Looking at price history of several items, they all seem to have doubled or tripled very recently. Several had their prices spike within the last day. How is that possible? Is it a bug/feature of the Amazon pricing model?

The price on this item (rated 4.5 with 121 ratings) was $14 until yesterday?! What’s up with that? I can tell these are all probably shipped from China by searching AliExpress which is like Amazon for 3rd party sellers in China. Here prices are still in the $15 range but will take a month to ship. Looking at the shipping dates on Amazon, it appears that items are shipping from China anyway so why not just order directly?

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I just purchased two sensors from AliExpress. This one has almost 14k orders and I chose the OLED + case version for $19.32. There are also coupons plus I paid with PayPal, which has fees and discounts too. It’s a bit confusing but the total came out to $36.11 for both. Delivery date is tentatively May 1st, which is comparable to some of the dates I see on Amazon. It’s my first order on AliExpress so let’s see how well this works.

*Medical Digital Pulse Oximeter LED Oximetro blood oxygen Heart Rate Monitor SpO2 Health Monitors Oximetro De Dedo*

Heh, I got an email from PayPal saying I spent $36.11, which is what I saw on the screen. However, on AliExpress, the order summary says order amount is $41.11 (not including $2 new user coupon and $3 PayPal discount?). If I ask them to generate an invoice, it says the total is $39.72. I wonder how much I paid for these oxygen sensors really.

Walking 3/28/2020

I went out for a quick walk, thinking it may help with the neuropathy pain. Nope. I started running out of breath just walking past a few houses. It’s the worst yet. I ended up walking once around our block and I can’t remember how I made it back home. It felt like imwas dreaming and falling asleep while walking. At the end of the very short walk, I was really breathing hard. I only walked 0.32 miles plus about 15 minutes of walking inside the house. Not good.

I took a Tylenol-Codeine pill when I got home. I also just soaked my feet in fairly hot water. Nothing had worked yet. I need to take a nap and have the pair wear off but my recent breathing problems while laying down is not helping.