Since I still have the unused peritoneal catheter, I’m flushing it every few days. I used a manual exchange bag with 2500 mL of 2.5% dextrose solution split into two fills/drains of ~1250 mL. When I first did the initial drain, I noticed that the fluid was super red, like it was 100% blood. I took a photo of the first drain:

Usually when there is some bleeding in the abdominal cavity, some blood will tinge the solution pink. This seems a lot more reddish than previous instances of pink drain. There mush have been a lot of blood. I know a few days ago I had constipation and had to push really hard to poop, probably harder than I should have considering the surgery recovery. After draining, I filled with the remaining 1250 mL of dialysate solution. Hopefully all the blood was flushed out with the first drain and the second drain will be more normal. I also got about 200+ mL of UF on the first drain so I may get 400-500 mL of UF total, which will make hemodialysis a bit easier tomorrow.

Dang it. The pain that appeared in my right ankle while walking is now repeating pretty consistently. The pain would appear for about a second every 30 second or so. It doesn’t feel like the nerve pain I get sometimes but more of a physical muscle pain like a sprain. However, due to peripheral neuropathy, I should feel that much from that spot. Not sure what to make of this. Hopefully it will go away after a few hours like the nerve pain.

==========

The pain is more intense now and spreading into a wider area in the ankle. I think it’s not physical but neurological like the stabbing numbing pain I typically get. If so, it will probably go away after 24 hours but will also keep me up all night tonight, not that I’m getting any sleep anyway. I was just thinking that I haven’t experienced peripheral neuropathy pain since the second week after surgery, just this constant numbness. Sigh… looks like my luck ran out.

When I first started dialysis, someone mentioned that I should find a support group. It was evident that my kidney dialysis center did not sponsor a support group. They have a social worker and other people to support you but there’s not much interaction with other patients. I’m not sure what I was Googling but I found this recently. It appears to be a support group hosted by Saddleback Church in Lake Forest. Saddleback Church is one of the largest megachurches in America. There’s probably close to 25,000 people in attendance each weekend. I think it will be good to talk to other Christians with kidney disease experience. I have so many spiritual questions regarding God and kidney failure.

I sent an email to the contact confirming the next meeting’s date and time, and also whether I am allowed to be late since the meeting starts at 1:00 pm and I don’t usually get out of dialysis until 1:00 pm. Saddleback Church is about 25 minutes away from my dialysis center. I hope I can go, even for part of the meeting.

My sister-in-law’s parents are visiting from out of town. They’ve been here for about two weeks and are leaving for home tomorrow. The mom said she is carrying consecrated oil and asked to pray for me. She dabbed some oil out of a small vial on my forehead and prayed for me. I’m not sure what denomination she belongs to, or what determines whether the specific oil is consecrated or holy. The prayer sounded pretty “normal” Christian but when I Google “consecrated oil” on the Internet, most of the hits are related to the Mormon church. Hmm.

Speaking of oil, there was a revival meeting at my church several months ago. They invited a ministry called Flowing Oil who claimed that oiled flowed out of a bible, which they collect and distribute. At church, I did see a clear plastic bucket with a bible and full of oil. I have a vial of that oil but what am I supposed to do with it? Rub it on my forehead? Rub it on my back near my kidneys? Can I do it myself or someone else more spiritual has to do it? I remember one of the speakers (or his wife) came around, rubbed a bit of oil on my forehead, and nothing happened. I’ve had it for five months and not sure what to do with it.

I went to my sister’s house around lunchtime today and walked their dog. The Fitbit tracker failed again halfway but I only walked 0.72 miles at a pace of ~30′. It was harder with the dog since she is easily distracted and does not walk in a straight line. She also pooped twice.

I’m back home and it’s only 4:00 pm. The temperature outside is ~65 degrees and there is still light out so I think I’ll walk some more. It’s got to get easier at some point.

==========

OK, since this post was still up on my computer, I’ll just add to it. I walked 0.72 miles at a pace of 23’38”. It felt much colder than 65 degrees since the sun was going down. I also noticed an intermittent pain in my right ankle. I hope it’s not from walking; I didn’t even walk that much.

During both walks, I felt tired again. Near the end of the walk with the dog earlier, there is a very slight uphill, barely noticeable. However, I started breathing hard like I was climbing Half Dome or something. It was a bit embarrassing and worrisome. How am I going to get through Cardiac Rehab if my heart is still so weak after seven weeks?

An old high school friend was supposed to come visit me today. However, his wife was admitted into the hospital yesterday and may need surgery right away. He mentioned that it seems like a lot of friends are experiencing cardiac issues, and it could be a spiritual attack.

Being a Christian for a long time, I’ve heard of instances where lots of things go wrong right before a missions trip or evangelistic outreach. I also read most of the Book of Job to know that there are evil spirits that negatively impact human lives. However, even though I pray for healing and comfort, I’ve typically viewed my huge list of medical issues as caused by my own ignorance or stupidity, or bad luck. Of course it’s possible that some may have spiritual causes but I’m not sure how that affects my care. I still need to take medication, visit doctors, and try to remedy the causes and symptoms.

For example, take ESRD. I pray nightly for either healing, possible transplant, and comfort from the effects of kidney failure and dialysis. I know there are a lot of other believers praying for me too. But I still need to go to dialysis and manage the transplant process at UCLA. I can’t sit back and wait for miraculous healing because God may “heal” me through a successful transplant. Looking at the Book of Job, is my only task to persevere and not lost faith, and God will restore me in the end?

I don’t know.

I just spent 30 minutes typing up a post with all my medical issues and I hit the back button on my mouse by accident. WordPress didn’t save a draft in all that time so all of it is gone. Here is take II of the post…

Since this is the first post of 2020, I’m going to list out all my medical issues and symptoms in more detail than my previous post on December 21st. Hopefully some of them will improve or get resolved in the new year.

• ESRD (End Stage Renal Disease): on dialysis for 2 1/2 years; currently on wait list for deceased donor transplant; potential live donor transplant opportunities in six months
• Dialysis access: need to remove peritoneal dialysis catheter; hopefully surgery won’t disable me for 2-3 weeks delaying Cardiac Rehab; need to decide whether to continue using chest catheter or put in new fistula, possibly only used for a few months
• Completing Cardiac Rehabilitation Program: orientation on January 16th; need to complete 8-week program while dealing with likely return to work and possible delay due to PD catheter removal surgery
• Peripheral neuropathy: long-term loss of sensation in both feet; numbness in hands and feet feels more intense than before bypass surgery; still hoping it is a side effect of amiodarone though that appears less and less likely as time passes; willing to look into acupuncture and reflexology for possible relief from symptoms
• Hypertension: blood pressure increased significantly over past two weeks; waiting for new medications to take effect; hopefully lowering blood pressure will relieve some of the other symptoms listed here
• Continued back pain and pressure in chest: much improved over time but still painful to lie down and contributing to insomnia; waiting to discuss with Cardiac Rehabilitation physical therapists
• Minimal urine production: very small improvements in urine production; also less and less likely it is a side effect of bypass surgery; most likely continued loss of residual kidney function due to poor peritoneal dialysis effectiveness
• Changing tastes and poor appetite: appears to be improving; just ate large meal without any issues; need to find food compatible with new taste preferences and won’t trigger gag reflex/vomiting
• Insomnia: still only sleeping 3-4 hours per night; mainly due to physical discomfort from more intense numbness in feet and soreness in back and chest; improved slightly with new bed and mattress but still tired all day
• Long-time scab on left foot: blister fell off yesterday and looks dry underneath; possible fungal infection in toenails of left foot; appointment with podiatrist on January 10th
• Multiple dental issues: lots of cavities and possibly several root canals; obtained clearance from cardiologist for deep teeth cleaning but will need multiple appointments with dentist and endodontist
• Appointment with endocrinologist in March: seeing new specialist for diabetes; hopefully no new issues to deal with
• Lumps in left leg near vein extraction site: possible side effect of bypass surgery; hopefully compression socks/bandage will be effective in removing lumps but an ultrasound looks more and more necessary
• Possible constipation: bowel movement every 2-3 days; taking Senokot (laxative/stool softener) daily

The chart shows my weight as recorded by my Fitbit Aria scale over the past six months. It connects to my WiFi and sends the weight readings to an account on the Internet. I weighed myself each night prior to the heart bypass surgery since I was on peritoneal dialysis and part of the nightly procedure was to take a weight measurement. The straight line in November is the bypass surgery and hospital stay. Post-surgery, I came home at 235 lbs. Today, the number is ~205 lbs so I lost ~30 lbs in a bit over a month. Initially I had a lot of retained fluids from the surgery but that got removed by dialysis. That’s probably the large decrease since the end of November.

With eating healthy and exercise, I think I can drop my weight further. My current goal is 80.0 kg or about 176 lbs. That means I have to lose another ~30 lbs and it will need to be real weight instead of just fluids.

When I checked the weather map on my iPhone at 5:00 pm, it said the temperature outside was 72 degrees. Since that is still pretty warm, I decided to do one more walk before dinner. It was just getting dark and it certainly did not feel like 72 degrees but much cooler. Anyway, the track record said I walked 0.62 miles at a pace of 25’41”. On Google Maps, if you measure distance, my path comes out to 0.70 miles. That a fairly large discrepancy. I wonder if all the other walks have been measured incorrectly.

Since the weather is so nice, unlike the 50 degree winter weather we’ve had all week, I went out walking again. There were a lot of people out in the park, most of them walking dogs. This time I walked exactly 1.0 miles at a pace of about 25′. I started the walk with the Fitbit app, then stopped it and continued using the actual Fitbit. It failed to record the last time I used it but worked this time. You get a lot more data if you use the tracker that you don’t get with the app, like heart rate, altitude, calories, steps, etc. Once again, I felt really tired as soon as I started walking. I thought it was supposed to get easier the more you exercise. That’s definitely not the case today. Both walks were really tiring, and I was breathing fairly hard at the end of both walks. Maybe it’s the weeks of only sleeping 3-4 hours per night.

This is the tracker recorded part. It’s only the last portion of the walk.

It was much warmer than I though. I had to take my jacket off about half-way through the walk. Not sure if that was the reason but I felt more tired the previous days. I walked 1.21 miles at a paces of 27’18”. I forgot to start Fitbit logging right away so it was more like 1.25 miles. As mentioned above, I felt really tired so the pace was a bit slower.

The weather was really nice. It was kind of windy but not really noticeable. A lot of people were out in T-shirts and shorts. It really didn’t feel like the last day of the year. If the weather holds, maybe I’ll go walk a bit more after lunch. Apple weather says temperature will stay at 72 degrees and sunny until 3:00 pm.

Last week was the first week I felt comfortable exercising everyday. Previously, when I walked around the block, my blood pressure would drop, I would feel dizzy, and be super tired when I got back. On dialysis days I would be exhausted afterwards with no energy for a walk. Last week was better. I think I walked 6 days, even though the weather was pretty cold for California.

Twenty miles is not a lot. It’s not even an entire marathon. But compared to my previous levels of exercise, it’s quite a bit. I still get tired after walking only a mile, and there’s still weakness in my legs when I climb stairs, but there is definitely improvements over my first few weeks after heart bypass surgery.

It’s almost 10:00 am on New Year’s Eve. Weather app says it’s 67 degrees out but it’s somewhat windy. I think I’m going to go out anyway since the sun is shining.

It’s only 3:36 am on New Year’s Eve but I thought I’d do a little recap of 2019. By all count, it’s been a shitty year for me. I guess the only bright point is that I’m still alive, likely missed out on a massive heart attack by going to the ER early. Otherwise, there’s not much to celebrate.

• Switched to peritoneal dialysis starting April but had to go back to hemodialysis in November. Likely messed up what residual kidney function I had left so fluid control on hemodialysis is much more difficult this time around.
• Assigned new responsibility at work after three years at previous function. Only have very little experience with new responsibility yet expected to lead a team of analysts and developers.
• No kidney transplant despite two donors trying to donate a kidney
• Quadruple coronary artery bypass graft surgery. I guess I would need the surgery at some point so likely the earlier the better for recovery but it’s a pain dealing with recovery and ESRD/dialysis at the same time.

Hopefully, 2020 will be a better year. I’m trying to eat healthier and exercise a lot more. I think I’ve walked more in the past 3-4 weeks in recovery than I’ve walked all year prior to surgery. Since peritoneal dialysis was such a dismal failure, being back on hemodialysis is much better for short-term health. Also really hoping that a kidney transplant will happen by summer.

The new (old) Fitbit Charge 2 my sister gave me tracks your sleep cycles through breathing and heart beat. I slept so little last week that it wasn’t able to analyse my sleep. This week, it was able to do some analysis and I got a sleep score of 66 yesterday, and only 55 so far today. I tried going to sleep early but woke up at 3:16 am.

I think you’re supposed to have more REM and deep sleep so today’s result so far is pretty pathetic. I’m gong to go back to bed to see if I can fall asleep again.

Concerned about my high blood pressure, I wrote a long message to my nephrologist detailing the data I collected today. She is out of the office but there are several nephrologists in the group and they cover each other’s messages. The main doctor, he’s also the head of the nephrology practice at the hospital, called me back and agreed that the numbers are way too high. He prescribed a new medication, Olmesartan Medoxomil, which is generic for Benicar. I’ve had a lot of hypertension medications in the past but never this one. It’s an Angiotensin Receptor Blocker, similar to Losartan and Valsartan.

Info on WebMD

The side effects don’t look that bad: dizziness but that’s the drug decreasing blood pressure; high potassium levels which I’m watching anyway; kidney problems (too late); and diarrhea. The pharmacist did mention if I get a persistent dry cough, then I should stop taking the medicine and let the doctor know. Hopefully this will help lower my blood pressure since the numbers now are kinda scary.

Since my blood pressure is so high, I did not experience any dizziness standing up after dialysis. I felt fine (close enough) and didn’t have any issues driving home. Previously, my diastolic blood pressure would drop quite a bit after dialysis. Since I drove, the nurses wouldn’t let me go home until the number was over 100. Actually, due to the agratroban delay, we didn’t even measure my standing blood pressure. It would have probably really high. I measure right after I got home and it was 155/something.

I ended up leaving dialysis at the regular time even though I showed up 45 minutes early per their instructions. Usually, when they disconnect me from the dialysis machine, they inject agratroban into my chest catheter to prevent clogging. However, likely due to the schedule change from Tuesday to Monday, the hospital forgot to send the agratroban. The nurse realized this near then end of my session so she had to call the hospital pharmacy to have them rush an order. I ended sitting in my dialysis chair waiting for the medication to show.

I saw the label on the agratroban syringes and each line (there are two) of the catheter gets 18 mL injected. Drugs.com show $175.82 for 50 mL of agratroban (1 mg/mL concentration) so my 36 mL should cost no more than ~$127. Not super-expensive but likely more than heparin. There are a lot of different prices for heparin on Drugs.com so I’m not sure how to compare.

My blood pressure is still crazy high, continuing the trend from last Saturday. I am still in the middle of dialysis but took down the last several readings.

Time	Diastolic	Systolic	Pulse	Notes
8:32 am	202	107	69	Sitting/legs up
9:00 am	182	105	71	Sitting/legs up
9:30 am	185	106	67	Sitting/legs up
10:00 am	201	110	67	Sitting/legs up
10:30 am	198	111	66	Sitting up
11:15 am	211	126	66	Lying down
11:30 am	190	118	67	Sitting up
12:00 pm	187	106	68	Sitting up

The nurse came by and added some UF saying that I may be closer to 92.0 kg. We just raised my “dry” weight to 92.5 kg because I thought I was dehydrated. She didn’t seen overly concerned though. I’m really concerned. I don’t think I’m eating or doing anything different than a few weeks ago but my blood pressure seems to have gone out of control. The nurse also said we should let my nephrologist know but no one came to do rounds at the clinic today. I was going to look for lunch after dialysis but I think I need to rush home and take my 25 mg of Metoprolol. I did sneak in a half pill at breakfast but that probably got dialyzed out by now.

I got another text this morning to come into dialysis early. However, my dad forgot that the schedule changed due to New Years Day and has an appointment at noon. I took the opportunity to insist that I can drive myself to and back from dialysis. The center is only ~15 minutes from my house.

So here I am at dialysis waiting for the session to end. In the past, my blood sometimes drop too low and I feel dizzy after dialysis. With my blood pressure consistently crazy high (right now it says 202/107), I doubt I will have any hydrostatic hypotension issues post-dialysis.

As much as I want to complain about dialysis, I see people in worse situation than myself. The patient on the left is now groaning non-stop. This happens quite often when she is not sleeping. Maybe she is in a lot of pain? Her son (?) is sitting in her scooter so she can’t walk either. The girl across from me is also in a scooter. I’ve only seen her a few times but she looks awfully skinny and frail… and so young. At least I lived until 49 before starting dialysis. While I was typing this paragraph, two more elderly patients showed up in wheelchairs, and the lady across from me is still groaning and complaining.

It seems that Metoprolol has high dialyzability, which means the dialyzer will filter most of it out of my bloodstream.

This likely explains why my blood pressure was increasing during dialysis on Saturday. It was initially at 157/88 but rose steadily during the session. Now it seems likely that as the medication was being removed by the dialyzer, my blood pressure would increase. However, the blood pressure remained high Sunday even though I was taking a higher dose of Metoprolol than before. Anyway, I think I will hold off on the Metoprolol until after dialysis. Hopefully my blood pressure won’t be too high going in this morning.

Here is the research article related to the chart above:
β-Blocker Dialyzability in Maintenance Hemodialysis Patients

Chart showing dialyzability of selected medication:
DialyzeIHD: Dialyzability of Medications During Intermittent Hemodialysis