There was a new doctor doing rounds today. I had met her in the hospital during my heart surgery stay, but this was her first time rounding this clinic. She replaced one of the doctors in my nephrologist’s medical practice so I’ll probably see her once a month. I think this is her info:

Dr. Sarah Lee

Wow! MD and PhD. Also Johns Hopkins med school and UCLA residency. Also vice-chair of nephrology at Hoag hospital. One of the other doctors in the practice is the medical director of nephrology at St. Joseph hospital so I think I’m getting good care.

She noticed my sky high blood pressure and recommended doubling my olmesartan prescription if nothing changes next week. Can’t wait.

Time	Systolic	Diastolic	Pulse	Notes
9:09 am	199	109	74	Sitting/legs up
9:39 am	181	99	73	Sitting/legs up
10:09 am	176	103	73	Sitting/legs up
10:39 am	190	104	73	Sitting/legs up
11:09 am	201	110	75	Sitting/legs up
11:39 am	185	106	73	Sitting/legs up
12:09 pm	178	91	78	Lying down
12:38 pm	194	111	76	Sitting/legs up
12:45 pm	159	94		Standing

Today’s blood pressure readings. Still high but there is a weird spikes at ~11:00 am. I wonder how accurate is the built-in blood pressure monitor. Either the readings are off or my blood pressure is fluctuating wildly while I’m just sitting there. You would think as they pull fluid out of me, the blood pressure should drop somewhat.

An old friend from high school visited me at home yesterday and we went out to lunch at a local restaurant. There were a lot of food choices including breakfast items. What I really wanted was a breakfast burrito with bacon and lots of pico de gallo.

Feeling the need to eat healthier, I got a salad and half sandwich instead. Even then, I got ranch dressing (on the side). I used it sparingly but I probably need to start liking balsamic vinegar as a salad dressing. Also the waitress asked my side choice and said I could get both fries and onion rings. Aaahhhhh! I ended up getting potato salad but probably should of chose fruit. I also ate most of the food, except for the ranch dressing and half the potato salad. I felt full afterwards but likely can’t do that for every meal due to dialysis weight restrictions.

I think I’m ok now since my appetite is still generally poor. However, when I start eating normal again, my nephrologist thinks I’ll gain weight. I’m actually trying to lose another 20 lbs so I need to figure out the eating and the exercising.

Holy shit! That has got to be the worst automated phone system in the universe. I just spent half an hour trying to talk to a live person and got hung up on five times. There’s no menu option to talk to a representative. The entire system is a recording and when you enter “wrong” entries twice, it hangs up on you. I had to Google to find a way to get to a live person (enter 3-2-1-0 by the way).

On my fifth call using the “trick” above, it did seem I was about to be transferred to a representative but then the system said there were too many people waiting and hung up on me. What kind of f*cked up bullshit is this? Sure, let’s have more and bigger government programs! Can you imagine a for-profit company pulling this crap? They would be out of business in a heartbeat yet California takes >10% of my salary and gives us this nonsense.

I guess I have to write a letter since I can’t talk to anyone.

The last time I went to the optometrist, I got two pairs of glasses: one for distance and driving, and one for reading and computers. I got used to wearing the reading glasses full time since it was more convenient. For some reason, I dug up the distance glasses this morning and wore them to drive to dialysis. Of course I forgot to change back so I’m sitting in the dialysis chair and I can’t reading anything up close or in my lap.

One of the fears of being diabetic is losing your sight through diabetic retinopathy. It’s one of the leading causes of blindness in American adults. I’ve been seeing the same ophthalmologist for the past 5-6 years so since my diabetes is pretty well controlled, my eyes are doing okay.

Since I’m seeing the vascular surgeon tomorrow regarding removal of the PD catheter, I decided to flush it one more time tonight. The drain was still pink though much less color than previous flushed. I think it originally started on 1/1/2020 when the flush was very red. Since then, I’ve flushed it again on 1/2, 1/3, and today 1/6. In the past, pink drains only lasted a couple of days so six days seem like a long time for bleeding, even though it’s a lot less. i only know about it since I’m flushing fluid in and out of the abdominal cavity. Once the catheter is removed, I guess any bleeding stays in the cavity and hopefully your body just reabsorb whatever fluid is there.

I put in about 2 L of 2.5% dextrose solution and left it in for about an hour and 45 minutes. I then drain it into another bag and got about 2.32 kg of fluid out for a UF of ~300 mL. I think my blood sugar was a bit high so the dextrose solution is less effective since usually the UF is closer to 500 mL. I spoke to my doctor friend earlier this evening regarding the PD catheter removal. He thinks the vascular surgeon will just pull it out instead of doing full-on surgery. He also thinks it’s too early (~8 weeks) after heart surgery to receive general anesthesia again.

Here’s this week’s recap. I walked less steps than previous week, 39,838 vs. 41, 474 but climbed more stairs and burned more calories. It’s not on the screen caps but average restful sleep went up to 4 hours 25 minutes from 3 hours 30 minutes. If true, that’s probably the best news from Fitbit this week.

The weather this week is much nicer (warmer; it was pretty cold outside when I walked last week. Since I’m still not working yet, walking has been my biggest responsibility each day. I think I need to walk a bit more each day and not worry about the pace yet.

Speaking of the government, I got a letter from the EDD saying that my claim cannot be processed since the medical provider information has not been provided. They also included a paper form for me to give to my doctor to fill out. However, I just received a call earlier from the cardiologist office saying they just completed the form online. I checked SDI Online and the claim status did change to pending processing. I hop that means everything is good and pending; I’m not sure how long it would take my doctor’s office to fill out a paper form and send it in to EDD.

There weren’t too many people outside this morning since it was pretty early and also a work day. The question then is who are all these people in the park? Housewives? Unemployed? Other people on medical leave?

I walked 1.31 miles at a pace of 23’09”. I keep saying that I don’t feel any stronger but I guess I’m walking a bit longer. Two weeks ago I was averaging 3/4 mile and then about a mile last week. I need to find some variation in the paths I take so I can walk a bit longer at the same pace. Hopefully that will prep me for the Cardiac Rehabilitation Program, though my nephrologist keeps reminding me I’ll be in there with 80 year old patients.

I have a friend from high school and college visiting me in a bit. While the weather is nice, I’ll probably go out walking again later this afternoon.

Just got back from an early appointment with an endodontist. It was just a consultation meeting but news is pretty grim. My new dentist sent me over there to check out five teeth and all appear to need a root canal. Actually, they’re not sure they can save one of the tooth so maybe four root canals and an extraction. Sigh, I even got dental clearance for transplant about 18 months so shit hit the fan pretty quickly. I know during the last several months on PD, I would often feel terrible and would stay in bed all weekend… no tooth brushing or flossing. I even have an electric toothbrush and a waterpik but too lazy to use them. I guess like the heart surgery, this is yet another wake up call. I make an appointment in two weeks to do the first two root canals. The endodontist said that technology has progress a lot since my last root canal which seemed like a huge ordeal. They will administer some local anesthesia, and each should take about 45 minutes. Likely I won’t feel a thing, and my regular dentist will cap it later with a crown. Easy peasy.

The receptionist asked if I wanted to see a price list. I told her it needs to be done so whatever insurance won’t pay, I’ll pay it. I do feel like it’s going to be expensive though. Hopefully it will be <$1000 per root canal + crown. At least I maxed out on my FSA plan at work so I can use that for some of it.

I think I’ve done pretty well administrative-wise post surgery. I had to get a notebook to write everything down but I’ve made all my doctor’s appointments, got (almost) all my questions answered, kept up with medications and test results, and coordinating a lot of paperwork. Not working has helped a lot too since some phone calls puts you on hold for a long time.

The only two items pending for awhile are with government agencies, specifically the SSA and California EDD. It’s no so much the paperwork but it’s hard to contact anyone that can help. For the SSA, every phone is answered by an automated phone system that goes through lots of useless information and makes you enter your SSN. Then the system tells you there is a 45 minute wait to speak to anyone. They also suggest that I visit ssa.gov but my case, Medicare for ESRD, is uncommon enough that I have to call in. Anyway, I just check my Social Security and my application is still pending. I wasn’t counting on starting Medicare on 1/1/2020 anyway so expectations were low.

The other government agency is the California EDD. Since I’m on FMLA medical leave, I’m not getting paid. For legit short-term disability cases, the EDD provides disability payments while you are out of work. The amount is not that much, up to $1,252/week, but anything is better than $0. Our work also provides disability insurance up to $1600/week, but the insurance company assumes that you will get the full EDD payment. The insurance is with The Hartford and all I needed to do was make one phone call. A nurse(!) took my info, evaluated my case, and then called my doctors. I was approved almost immediately but only for the $348/week, and they’ve paid me through the end of the leave period. At the same time, my EDD application is still pending medical provider info. I gave my claim number to my cardiologist’s office but they were used to filling out paperwork. EDD is now forcing everyone online (no paper form download anymore) but their system is not reliable (hard to register, always in maintenance when you want to log in), and if the person that registered online from the doctor’s office is out, nothing gets done. Good thing I’m not depending on disability payments to pay rent or eat.

I wish the government was more efficient. Everyone was pretty nice and helpful at the SSA but each time I was at their office, there are a hundred people waiting, and most of them sat there the entire time. Luckily I applied for Medicare 3-4 months before I really need it. This is the main reason I’m hesitant about socialized medicine in America. Having lived in Canada (a long time ago) and talking to my relatives there, a single payer system where patients don’t have to worry about co-pays, out-of-network providers, and potential bankruptcy sounds great but judging by the problems at the VA, I’m worried that the level of care will deteriorate greatly once the government takes over, federal or state.

I read about these today. I knew about compression socks, both the TED (Thrombo-Embolic Deterrent) hoses you get at the hospital and compression socks designed for standing or travel. They are tight and prevent fluids from building up in you feet, ankles, and calves. Evidently, diabetic socks are the opposite. They supposedly have a lot of special features for diabetic patients:

1. Seamless – no blisters
2. Non-constricting – more comfortable, like anti-compression socks
3. Padding – better protection
4. Warmth – my feel always feel cold; warmth = better circulation
5. White Sole – wound and fluid visibility
6. Moisture-wicking – prevent infections
7. Anti-microbial – prevent bacterial and fungus growth
8. Soft yarns – comfy and reduces abrasion

They sound pretty cool. I ordered a few pairs on Amazon to test out sizing. I have a mishmash of socks. If these are comfy, I’ll get some more and toss all my old worn-out white crew socks.

I’m supposed to wear compression socks during the day to see if the lumps in my left leg will go away. The socks seem to work while I wear them; once I take them off, the lumps return. Do I the wear a compression sock on my left foot/leg, and a diabetic sock on my right foot?

While the sun was out, I went for another walk. It was actually colder than it looked, though there were a lot of people in t-shirts and shorts. I was wearing long sweatpants and a pretty thick jacket. I used to be pretty tolerant of cold weather but at some point, I started feeling cold. Now I have a space heater in my bedroom, and often I was using an electric blanket.

Anyway, instead of walking through the park, I took some side paths that run between a few neighborhoods. I ended up walking 1.3 miles at a pace of 23’51”. Since the pace was faster (relatively), I was a bit tired and sweaty when I got home. This Harvard Health article says you should be 75% healed after four to six weeks. Well, it’s been seven weeks for me post-surgery and I don’t feel like I’m 75% healed. Some areas I’m fine but getting tired after 1/2 mile of walking is pretty weak. I wonder if I’m going to be ready for work in a month.

During our walk, my mom and I discussed using acupuncture to treat neuropathy. Typically, I am skeptical of TCM (Traditional Chinese Medicine); I lump acupuncture into the TCM bucket. However, I remember taking my mom to an acupuncturist a long time ago for her sore elbow. She used a heavy commercial clothing iron in her job and experienced soreness in her elbow. I think doctors just prescribed her painkillers that weren’t very effective but the acupuncturist was able to treat the pain in about a week. The explanation given for acupuncture usually has to do with the all mysterious qi or energy, and how it’s either blocked or diverted in the body. Acupuncture just opens up certain corridors so the energy flows again. That sounds rather unbelievable but I really don’t care at this point. If it works, then I’ll do it.

I also talked to my doctor friend at Harbor UCLA. I think he’s a skeptic too but he was all for trying acupuncture for neuropathy. He is the one that suggested taking gabepentin for my neuropathy. I think my parents were referred to an acupuncturist in Garden Grove by their friends so once I talk to my podiatrist to make sure sticking needles in my foot is okay, I will likely call and make an appointment. I’ve been Googling for more literature but it’s hard to find good medical articles.

Acupuncture for the Treatment of Peripheral Neuropathy: A Systematic Review and Meta-Analysis

Introducing a Standardized Acupuncture Protocol for Peripheral Neuropathy: A Case Series

Clinical analysis of traditional Chinese medicine acupuncture treatment of pain in patients with diabetic peripheral neuropathy

Fifteen-day Acupuncture Treatment Relieves Diabetic Peripheral Neuropathy

Acupuncture for Diabetic Peripheral Neuropathy: A Network Meta-analysis

Acupuncture for Peripheral Neuropathy: Conceptual Framework and Overview of the Evidence

Effects of acupuncture in diabetes neuropathy: case report

I keep trying to use the Fitbit tracker since it records a lot of data but each time it would cut the walk short. Today was the same. I started it about half-way in the walk and it stopped randomly on the way home and cut out the last 0.22 miles. I don’t know if the tracker is failing, or the connection to the GPS in the phone.

I started the walk using the Fitbit app on the phone so the total walk is in many segments: 0.96 miles at pace of 33’36”, 0.35 miles at pace of 32’53”, and the last missing 0.22 miles. I walked with my mom this time who recently had a stent put in her leg, and is still experiencing some pain. We walked pretty slow because it’s her first time walking outside since the surgery; she has been using the treadmill at home. We were also stopping for Pokémon so the entire trip took much longer. We walked about 0.6 miles to the park where my mom took a break on some park benches. I walked a bit further and back and then we walked home. I wasn’t too tired this time since there were several rest breaks. I also caught this Pokémon:

Hmm, these posts are becoming a regular feature, like the summary post for each of my walks. For today, the blood pressure is a bit lower but still fairly high, though oddly again, no one at the dialysis clinic seems to think it warrants some kind of emergency response.

Time	Systolic	Diastolic	Pulse	Notes
9:03 am	214	108	73	Sitting/legs up
9:11 am	197	105	67	Sitting/legs up
9:42 am	184	108	71	Sitting up
10:12 am	178	103	68	Sitting up
10:42 pm	171	100	69	Lying down
11:12 am	197	114	76	Sitting up
11:42 pm	187	113	73	Sitting up
12:12 pm	171	104	74	Sitting up
12:45 pm	189	101	74	Sitting up
12:51 pm	160	92	79	Standing

Again, I did not take the morning pill for Metoprolol prior to dialysis. If I take the medication, than the blood pressure will be lower initially but as it gets dialyzed out of the body, blood pressure will increase again. I carry the Metoprolol to the dialysis center and take the pill after the session ends.

Busy week next week for appointments:

• Monday morning: endodontist
• Monday afternoon: therapist
• Tuesday morning: dialysis
• Tuesday afternoon: vascular surgeon
• Thursday morning: dialysis
• Friday morning: podiatrist
• Saturday (very early) morning: dialysis
• Saturday afternoon: kidney disease support group

I was also thinking of stopping by work even though I’m still on medical leave. We have problems with a PayPal account. It’s for work but my name is on the account as the primary holder and the only phone number listed is my work number. They also said I need to log in from my desktop computer. Usually I can do this via remote access but that’s not working for some reason, even after logging into our VPN. One of our analysts who has a login for the account tried to get it working but PayPal’s login system is not very flexible.

I also need to meet with the CFO on what work will look like when I return in a few weeks. Seven weeks have past since I drove myself to the ER. I haven’t seen two of my new employees so I think I need to pop in and say hi. I also need to sit with my boss to discuss returning to work at some point and maybe going back to three-quarter time due to my dialysis schedule.

I’ve noticed that after each walk, the numbness and tingling in both feet is more intense but different than the normal background numbness I’m experienceing. I’ve always attributed that to increased blood flow and sensitivity. It soon wears off and everything goes back to the same as prior to the walk. I thought that with more walking and blood flow, there may be an improvement in the background numbness but so far, I can’t detect anything. The numbness intensity does vary a bit but there doesn’t seem to be any rhyme or reason.

It’s been almost a month since I stopped taking amiodarone. I was hoping the overwhelming numbness is a side effect from taking the drug. However, most Internet literature said that is typically a result of taking the medication for a long time, and I was only taking it for three weeks. I swear the numbness prior to the surgery and for first three weeks of recovery is not as bad as I’m experiencing now. It blocks out all other sensations and all I think about is the numbness and stiffness. I had to take my shoes off when I went to my dentist for a cleaning because I could to lie still for 20 minutes with sneakers on.

If this continues, I’m not sure what I’ll do. It scares me to death thinking this is permanent, even after I recover from bypass surgery and receive a kidney transplant. Maybe the endocrinologist has some ideas. My doctor friend recommended gabapentin but that’s another medication with it’s own side effects. My parents are asking around for an acupuncturist and as soon as I get an okay from my podiatrist, I’m going to see about a foot massage. Here is the conclusion from a paper at NIH:

This study demonstrated that reflexology therapy in addition to pharmacological therapy may be recommended in reducing the neuropathic pain and improving quality of life and may achieve holistic benefits to the patients suffering from diabetic neuropathy. However, the evaluation of reflexology therapy as an adjunctive regimen warrants further investigations to be carried out in a larger sample size amongst various communities.

Of course you always mention more research is needed but it seems the conclusion is leaning positive.

I occasionally donate to The Kidney Project at UCSF. I think over the past three years, I’ve donated $600 which is not very much. They have a website that’s not updated regularly but I found out they also have a Facebook page.

One of the recent posts is a year-end message from the two directors. I didn’t know that the project is a joint effort between UCSF and Vanderbilt University. In the comments, someone asked about how President Trump’s Executive Order 13879 has impacted the project and artificial kidney research. Unfortunately, the answer is not very much. It seems like even though the intent is there, there is too much government bureaucracy and political badwill to get anything done so far. Dialysis costs Medicare about $28 billion per year so the potential savings are huge, not to mention the improvement to patients’ lives. I can totally see people in Washington though saying, “Trump, bad!” and blocking everything he proposes. Reading the Facebook post, it’s disheartening to see that the first human trials won’t likely happen until 5 years later as they wait for funding and FDA approval.

The first clinical trial will test a small-scale version of the hemofilter in an external dialysis circuit to ensure the device material is suitable for human use. This trial had been planned for 2018, but due to the delays we experienced we now expect to start next year, in 2020. We will then look at the safety and performance of the implanted clinical-scale hemofilter, followed by evaluation of the integrated device (hemofilter + bioreactor) to show efficacy of the clinical-scale bioartificial kidney. We hope to arrive at this later stage of clinical trials in 5 years or less, assuming sufficient funding and no unanticipated scientific, technical, or regulatory setbacks.

Maybe all those bureaucrats should experience kidney failure and dialysis to light a fire under their asses to move quickly on this and other projects, and to provide some funding. It’s totally pathetic that UCSF has to count on private donations to make progress, and they’ve only raised $15 million to date. Just wanted to point out $15 million is ~0.05% of $25 billion.

As mentioned in a previous post, the deadline for me is 10-15 years, assuming I get a donated kidney soon. That’s when the first transplant will likely fail and I will need to go back on dialysis and start the transplant wait clock again. A working artificial kidney at that time would be great.

The nice weather is holding so even though this was a dialysis day, I went out and walked around the park. This time, my dad came with me. We walked for 1.02 miles at a pace of 27’43”. It’s slower because for the entire walk, my dad kept asking, “Are you walking too fast? Slow down if you’re getting tired. Do you want to take a rest?” Remember, for my first few walks outside, he came with me and brought a small folding chair in case I got tired and needed to sit and rest. I think the slower pace does help with the tiredness though. I didn’t hit that fatigue wall until about 1/2 mile into the walk whereas it’s been about 1/3 of a mile. Also, I am less tired after walking the mile than previously. The difference is only about 2-3 minutes but it seems to make a difference. If I wanted to walk farther next time, I probably need to slow down so I don’t get tired that fast. Maybe we’ll target 30′ miles, or 2 miles/hour, and see if I can walk for 2 miles.

I was looking through the portal from my medical group and hospital. They have a lot of my previous test results but it’s not very complete. I don’t think all the test results from the dialysis clinic are in there, and I know it’s missing results from when I was on peritoneal dialysis since it’s a different clinic altogether. The hospital, dialysis clinic, and most of my doctors are all in the same healthcare company. Why can’t they get their shit together and share medical data so I don’t have to update my medication list six times wherever there’s a change.

There was huge spike in the number of entries when I checked into the ER back in November. I can see they ran the test for Troponin several times:

Date	Result
11/11/2019	4.36
11/11/2019	4.21
11/12/2019	11.2
12/14/2019	0.24
12/14/2019	0.23

The first three numbers are prior to surgery. I think the 11.2 prompted them to do an angiogram since it was so high. The last two are from the ER visit and are pretty much normal for about a month after bypass surgery.

There are also lots of basic metabolic panels that include tests for creatinine, phosphorus, potassium, and other kidney related tests.

Date	Creatinine	eGFR	Potassium	Urea Nitrogen
11/11/2019	17.3	3	4.4	53
11/12/2019	17.8	3	4.7	56
11/13/2019	18.0	3	5.0	63
11/14/2019	10.6	5	4.7	33
11/14/2019	9.99	5	4.6	36
11/15/2019	7.97	7	4.3	33
11/15/2019	6.91	8	4.4	25
11/16/2019	6.26	9	5.6	30
11.18/2019	8.39	7	4.7	56
11/19/2019	6.73	9	4.7	40
11/20/2019	8.79	7	4.6	53
11/21/2019	7.06	8	5.0	41
11/22/2019	9.84	5	5.4	61
11/24/2019	8.0	7		42

You can clearly see when I switched from peritoneal dialysis to hemodialysis in the hospital. During the first few days, they wheeled a Baxter cycler into my room and a nurse set up the machine to run my prescription. Obviously, PD was not working for me from the creatinine and urea nitrogen numbers. Once I switched to hemodialysis, the numbers dropped quickly. Still, even with dialysis, I’m only at ~7-9% kidney function.

I was discharged on 11/21/2019 so the tests are probably a day behind. The 11/24/2019 test was done when I went to the ER for hypoglycemia. There are also a lot of Blood Gas tests done, especially on 11/14/2019 which was surgery day. There must be over 10 entries in the medical records but since I don’t usually get this test done, I don’t know what any of the items mean.

A few weeks ago, I asked the medical portal to email me all the test results in the system. When you try to print the email, the print dialog box says it will take 100 pages, double sided, to print everything.