It’s 2:35 am and I can’t sleep, mainly because my peripheral neuropathy is acting up again. I’m getting intermittent pain on the inside of my right foot. It started about an hour ago; I just took some Tylenol PM to see if that will help. Since I’m up, I thought it would be a good time to update my medical issues list:

• ESRD: the end may be near; my sister was accepted as a donor at UCLA and all I have left is a colonoscopy; there is some concern about some recent heart tests (Lexiscan stress test and echocardiogram) but my cardiologist thinks I should be fine for a kidney transplant
• Dialysis access: it’s been mostly okay after the fistulagram procedure; the techs still have some difficulty inserting the needles on some days
• Cardiac rehab: if UCLA is okay with my heart test results, then I don’t think I will go back to complete the program
• Peripheral neuropathy: since I haven’t been walking due to excess fluid in the lungs and getting that huge cut in my toe, I think the neuropathy attacks are increasing in frequency; I’m sitting here typing at ~3:00 am because an attack is keeping me awake now
• Back pain and pressure in chest: there is still some fluid in my lungs but much better since dialysis is lowering my dry weight and removing excess fluid
• Minimal urine production: no change
• Insomnia: the breathing issue is much better but most nights the numbness and pain in my foot is keeping me awake
• Dental issues: mostly done; probably have some cavities to take care of but those can wait until next year
• Endocrinologist: next appointment in December; A1C test results still in the “n0rmal” range
• Lump in left leg: no change
• Constipation: no problem now; having pretty regular bowel movement
• Ophthalmologist: still shows some retina damage from before but no real change from year-to-year

The huge cut in my foot/toe was a complete surprise. I guess I’m just unlucky. Dialysis was taking care of my excess fluid problem and I was getting ready to start walking again but that was delayed so my foot can heal. I have an appointment with the podiatrist in about a week to see if the cut is healing after he took out the sutures.

I saw this behind an exam room door during my colonoscopy consultation meeting:

I’m sure it’s pretty old since it asks about travel to China, South Korea, Iran, Italy, or Japan. That was the first wave COVID infection and seems to correspond with a Trump travel ban in March. If we were to update this list today, it would probably be a list of states in the US instead.

I went to meet with the nurse practitioner yesterday. What was supposed to be a 15 minute meeting turned into over an hour. I arrived 10 minutes early having completed a bunch of forms online. Of course, they still had forms to fill out so I spent 15 minutes filling them out. Then I waited 10 minutes for someone to call me just to bring me to an internal office where I sat for another 10 minutes. So close to 25 minutes after my appointment time, I finally get to talk to the nurse. She was really nice though and explained the procedure briefly. She also asked if I would participate in a study where they draw some blood and look for markers that match up to the colonoscopy results. After being sick a lot, I now agree to almost all studies since why not? Anyway, that was another 20 minute wait for the study nurse to interview me. The second nurse also took blood samples… about 8 test tube worth… with a very slow butterfly needle. Not sure if she’s also a phlebotomist but it took many pokes to get the blood going. Finally, they schedule the procedure and it’s not until December 15th. Ugh. That means likely there is no transplant this year. <sad face>

One tiny positive is that the study pays! I can’t remember exactly how much but it was ~$100 to $150. Better than nothing I guess.

Weird.

I have two pairs of glasses. Prior to this, I had a pair of trifocals since I can’t see near or far. That got changed to two pairs of glasses: one for driving, and one for computer work. As it turned out, neither one is good for close up reading so I usually take off my glasses when reading stuff on my iPad or iPhone. However, my day-to-day glasses are the ones designed for computer work.

Yesterday, I spent a few hours reading a novel on iBooks. I thought I left my glasses on my pillow but when I took a reading break, I could not find my glasses. I looked everywhere in my bedroom but could not find it. I ended up going to my car to get the driving glasses but I can’t see closeup well with them so it’s not helping that much. To do work, I have to take off my glasses and get within six inches of the computer screen to see clearly.

I’ve been looking for my glasses since last night, and now my parents are looking too. They should be in my room since I can’t really see without them, and don’t remember/can’t imagine leaving the bedroom without them.

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Updated: 10/29/2020 3:40 pm

Found! They were lying on the floor next to my bed, on top of a bunch of wires. I have a six port USB power hub that’s plugged into an AC outlet. There are lots of USB cables attached to it and all the wires were jumbled together. My glasses were just lying on top of the mess. I swear I checked there last night, and both my parents looked there as well. Great camouflage, I guess. I only found them because I was untangling some of the wires to plug my phones in. I felt rather than see the glasses. So weird.

I just found out my dad is at stage 3 of chronic kidney disease (CKD). He was showing me his blood test results from the non-stroke visit and his creatinine number was 1.43. The normal range is from 0.7 to 1.3 so it’s a bit high.That translates to a non-African American eGFR of 45. For comparison, my last labs has a creatinine of 9.63 and eGFR of 6. That is with dialysis.

I told him to call his primary doctor to get a referral for a nephrologist. When I found out about my CKD, it was probably in 2014 and my eGFR was ~50. Three years later, it had deteriorated enough that I needed dialysis and a transplant.

When I go to the hospital or see a new doctor, they ask if there is family history of kidney disease. I always answer no since no one I know has kidney disease. Now I’m wondering how much of my kidney failure is hereditary and how much is from bad living.

Of all the medical appointments I’ve had since the heart surgery, I have not missed any. That is also including my 3x/week dialysis treatments. At some point however, I was going to miss something. Well, today I missed my dental cleaning appointment. I was eating lunch, waiting for a 2:30 pm work call, when the dentist office called me at 2:15 pm. Turned out I had an appointment at 2:00 pm but for some reason, I thought it was tomorrow. I apologized profusely and we rescheduled for two weeks later. Ugh. I even marked the date/time correctly in Google Calendar but must have read the date wrong.

For context, I have the following appointments coming up:

• Cardiologist: 10/22
• Podiatrist: 10/26
• Dentist (again): 11/2
• UCLA Transplant Social Worker: 11/9
• Endocrinologist: December something
• Nurse appointment for shingles vaccine

I also got my referral to see a specialist for a colonoscopy. No date has been scheduled yet but I’m going to make it ASAP.

I had difficulty sleeping last night due breathing issues again. Without weighing myself, I knew that I was going to be overweight at dialysis this morning. I ended up weighing 83.5 kg, which is not that high, but it is 4.3 kg above my ending weight on Saturday. That’s probably too much. I’m really only given about 1,000 mL of fluid intake per day. Over the three day break, I shouldn’t gain more than 3.0 kg. All this is from drinking too much fluids. I had a few cups from the fountain at work Sunday plus a bottle of orange juice. I also got a Box Combo at Raising Cane’s, which comes with a 22 oz. drink. There were also several dinners where my parents gave me some of their soft drink.

The tech and I decided to remove 3,300 mL of fluids today, which include the saline flush-back to make sure any blood in the dialysis machine is returned to me. The nephrologist doing rounds decided that my weight was low enough so we’re keeping it at 80.0 kg, but we’ll try for 79.0 kg on Thursday. I think the fluid balance is very sensitive since having an extra one to two liters of fluid can affect my breathing. On the flip side, my ankles have been cramping slightly over the weekend. That usually means that we’ve pulled out all the excess fluids. Who knows…

Sigh, I have terrible luck. Since I couldn’t sleep, after typing the previous post, I decided to cut my toenails. This is always risky since I can’t feel anything if I cut too deep. Of course, that’s what I did on two toes on my right foot. Coincidentally, the worst one was the same toe that I cut badly last week. Anyway, I didn’t notice that I was bleeding again. The blood from the toenail seeped into the gauze and soaked it completely, and I managed to leave a trail of bloody footprints on the carpet again.

At this point, it was 4:30 and I had 45 minutes to get ready for dialysis. I woke up my parents and then tried to apply pressure on my toenail to stop the bleeding. I was successful for one of the toes but the other one would not stop bleeding after 20 minutes. I was planning to call the dialysis center to tell them I would be late when a combination of raising my foot and using antibacterial gel to finally stop the bleeding. I quickly stuck a bunch of band-aids, gauze, and tape on my foot to protect the various cuts, and my dad drove me to dialysis.

It’s not almost noon and there’s no blood on the bandages yet. I’ll need to remove everything to see if the bleeding truly has stopped. It will be an interesting discussion with the podiatrist tomorrow.

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Since my dad picked me up from dialysis, I didn’t get a chance to get some take-out lunch. I was planning to go to Raising Cane’s again but we just went home after dialysis. I ended up toasting some bread and eating PB&J sandwiches for lunch.

That’s Yet Another Emergency Room Visit. Sigh…

Tonight at around 8:30 pm my dad decided to turn off the AC so he asked us to open the windows. I went into the guest room and while opening the window, stepped on a cheap plastic stool, and tripped. The tripping part was fine. The stepping part was not. There was a connector between the legs to strengthen the stool and it had a sharp edges. The edge sliced into my foot, right where the fourth toe connected to my right foot. Due to my neuropathy, I didn’t feel the cut and proceeded to bleed all over the carpet upstairs. I only noticed when the blood was soaked into the carpet by my bed and my foot was sticking to the carpet. There was a lot of blood.

Anyway, I called my parents for help and for the next 2 hours, we tried to stop the bleeding to no avail. The cut was pretty deep; my dad thought he saw white (bones?) in the wound. Since it was 11:00 pm by this time, I could only call the 24/7 nurse line at our work clinic health provider. A nurse answered and I showed her my foot using video chat. She recommended that I go to the ER since there is a short window for good sutures and my cut looked like it needed to be sewn closed to stop the bleeding. Ugh. Meanwhile, my parents were trying to clean up the carpet as much as they could.

So at 11:30 pm, my dad drove me to the ER. I thought the wait was going to take a long time but they called me in at around 12:30 am. The ER wasn’t too busy; there were about 15 people in the waiting room. Once I got into an examination room, a nurse came by to unwrap my foot. Then a physician assistant came by and determined that I definitely need sutures. After another 20-30 minutes, he came back and took about 15 minutes to sew up my toe. It felt like between 10 to 20 stitches to close up the cut. Since I wasn’t dying, they quickly discharged me afterwards so we got home around 3:00 am. I wasn’t able to sleep afterwards and sat in bed until 4:30 am when I had to get ready for dialysis. It was like pulling an all-nighter in college, except with less soda and more blood.

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It’s now 6:30 pm and we just changed the bandage. There was caked blood and old gel from the sutures but my dad cleaned it off with some alcohol. I put some new gauze and bandages and re-wrapped my foot. Since I was so tired after dialysis, I just crashed and didn’t call the podiatrist. I will need to do so tomorrow and schedule an appointment to remove the sutures in two weeks.

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Appointment with podiatrist set for next Friday 10/16. Hopefully the cut will have closed by then and won’t keep bleeding once the sutures are removed.

Many years ago, when I started weighing myself pretty consistently on the Fitbit Aria scale, the app asked me to put in a weight target. I arbitrarily set it at 81.2 kg. If you use 5’11” as my height, that weight would give me a BMI of 25.0. I know that the BMI is not a great measure of anything, but it’s used quite a lot. At the time, I probably weighed close to 110 kg so the goal seemed really far away. Since the surgery however, I’ve been losing a lot of weight and finally hit that goal:

Again, because of how the weight was lost (not eating and sleeping well), this may not be a good thing. Weird thing is that both the St. Joseph Cardiac Rehab program and UCLA Transplant Center places a lot of attention on the number. Anyway, I am officially “normal” according to my BMI number.

My weight got down as low as 80.6 kg on the Aria scale. That’s 178 pounds. Again, I don’t think I’ve been that “light” since high school. Now I have to figure out how to exercise and build back some muscles without gaining a lot of weight.

Due to the difficulty last time I took a walk, I wanted to try again today since I seem to have less fluid retention after the last dialysis session. Instead of going outside, I just walked on the treadmill in the garage. It was about 86 degrees in the garage so that didn’t help. Anyway, I walked for about 25 minutes at 1.6 miles per hour so maybe 0.7 miles total? I did take a quick break to take a tiny sip of water but felt fine the rest of the time. I wasn’t even breathing hard at the end of 25 minutes though I did feel a bit tired so I didn’t go for 30 minutes.

Hopefully this means I’m close to getting rid of all the excess fluids and my breathing will go back to normal. Maybe I’ll ask the dialysis techs to drop another 0.5 kg tomorrow and see if I can leave at 82.0 kg.

I had another one of those “how did I get here” moments this morning. I was sitting in the dialysis chair, holding my arm with gauze taped over the blown arterial cannulation so it wouldn’t keep bleeding. It was about 6:00 am in the morning, my arm hurt terribly, and I was exhausted from not sleeping. “How did I get here?” Again, if you asked me 5 or 10 years ago, never in my wildest dreams nightmares did I imagine that this would be my life. I really don’t have anyone to blame but myself, but I’ve seen many doctors in the past and somehow this possible outcome was not communicated to me clearly. With a long history of diabetes and hypertension, how come no one tested my kidney function until I was 45 years old?

With the COVID-19 pandemic, I would probably be sitting at home instead of at the dialysis clinic anyway since there’s nothing to do and nowhere to go.

This past year, I had a lot of “first” milestones: first walk, first solo drive, first shower, and now, first complete shave. This is more of a laziness issue than anything else but I haven’t shaved with a razor for over 18 months. Since I started PD back in April of 2019, I got lazy about shaving. Often I would wait over a month to shave, and invariably, the whiskers are so long that they jam up my razor and it takes forever to shave, further discouraging more shaving. Finally I went out and bought a cheap electric trimmer on Amazon for $20. That trimmed close but not as close as a razor but I just left it, so for 18 months I always had a stubble.

While taking a shower today, I decided to bring the manual razor and shaving cream into the shower. In the past, I typically shave in the shower anyway since it makes clean-up much easier and your skin is already warmed up. Anyway, now it feels weird not to have any hair on my face after getting used to it for so long.