2020

So I did skip cardiac rehab yesterday afternoon. I had a gap from 1:00 pm to 4:00 pm so I thought I would go to rehab and get one more session out of the way. However, I felt terrible during dialysis: tired but unable to sleep. I ended up going home and took a 90 minute nap before my therapist appointment.

Acupuncture appointment went really long today so I didn’t get back home until ~7:30 pm. I had a quick dinner then promptly fell asleep at 9:00 pm only to get up ~10:30 pm. I’ve been trying to fall asleep again since then; it’s ~1:30 am and so far I am unsuccessful. I have to leave the house early this morning for a work related commitment so I really need to get back to bed.

Dialysis 2/25/2020

Ugh, I feel terrible today. The neuropathy in my feet is probably the worst it’s even been. It feels like that time in December when I was sent to the ER from the dialysis clinic. It’s also hot in here for some reason. Usually it’s freezing inside the clinic but today, I had to get help to remove my jacket and it still feels warm. I can feel a panic attack coming and there’s over three hours left.

I also got only three hours of sleep this morning so I’m super tired. I’m called into my boss’s staff meeting right now and it’s hard to concentrate. I was going to cardiac rehab right after dialysis but I think I need to go home and take a nap. I still have two more appointments (therapist and acupuncture) this afternoon.

I’m actually a bit worried about my neuropathy and acupuncture. The numbness is probably not related to my Amiodarone prescription so likely acupuncture is having an effect. I do feel more in my feet but the numbness is increasing in intensity and feels worse overall than before.

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I came in to dialysis today at 94.5 kg. That’s 3.5 kg over my “dry” weight. My regular nurse is out sick so the substitute nurse asked me how much fluid to take out. We settled on 3.0 kg for today. I think there may be some correlation between lower leg edema and neuropathy intensity. It’s hard to control fluid intake on workdays with all the available free drinks. I usually start falling asleep late afternoons so need a cup or two of coffee to stay awake. If I was at home, I would just go and take a nap and skip the extra fluids.

Intense Neuropathy

Right now, the numbness in my feet is pretty overwhelming. For some reason, the neuropathy has been very intense this weekend. During dialysis yesterday, there were several times that I felt like asking the nurse to disconnect me so I can get up and walk around. Still not sure how I sat through all four hours without another panic attack.

This afternoon we went to my sister’s house and played mahjong. That means I sat in one place for probably 5-6 hours. Maybe that has something to do with the numbness in my feet right now. It is unclear whether this is just the condition getting worse, or it’s a result of all the acupuncture I’m getting. I’ve told my acupuncturist that I have a bit more feeling at the bottom of my feet but at the same time, the numbness is also more intense. I don’t know if that is what she expects from all the acupuncture therapy.

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I just took a closer look at my lower legs and ankles; they’re pretty swollen. It’s probably due to sitting for a long time. Maybe the increased numbness is from the edema.

Cardiac Rehab Update

After getting emails from the rehab nurse and clearance from my vascular surgeon’s office, I felt like I should continue with cardiac rehab. I ended up going on Monday, Wednesday, and Friday. Since Monday was President’s Day, I only had to bring clothes to change for work on Wednesday and Friday. I would get there around 7:40 am and get done right before 9:00 am. I was still able to arrive at work before 10:00 am both days so the schedule is fine.

That means I’ve completed eight sessions out of the required 24. I still have a lot of appointments on Tuesday afternoons so it’s hard to go four days a week. However, I think I should be able to complete all 24 sessions by the end of March, in time for UCLA Transplant Center to clear me starting April.

The cardiac nurse asked me about my coworker on Monday. I think he showed up for orientation or first session. However, I heard his pacemaker is acting up, activating when it’s not needed. I think he stopped rehab until he has another surgery to fix the pacemaker sometime in early March so I haven’t seen him at rehab yet.

Power Wheelchair

The patient next to me has a very nice powered wheelchair/scooter. He has his lower left leg amputated so he definitely needs something to get around. I don’t think he has a good support structure. His mom visits sometimes but I’ve only seen her twice in over two years.

The chair is an Avid Rehab Vector by a company called Merits. The list price before options is $7,000. Tricked out, it will probably cost >$12k. Top speed is 5 mph and has a range of 24 miles. I’m not sure how far the patient lives; he comes in a medical transport van each session. Most mobility challenged patients come in a simple manual wheelchair so maybe he needs it on off-dialysis days.

Lab Results 2/13/2020

Lab results from the previous test are available online. Here is a three month history of my Renal Panel:

Test	Normal Range	12/12/2019	1/16/2020*	2/13/2020
Albumin	3.6 – 5.1	3.7 g/dL	4.3 g/dL	4.1 g/dL
Calcium	8.6 – 10.3	8 mg/dL	8.7 mg/dL	8.7 mg/dL
Potassium	3.5 – 5.3	4.6 mmol/L	4.8 mmol/L	5 mmol/L
Phosphorus	3.5 – 5.5	4.1 mg/dL	4.2 mg/dL	4.8 mg/dL
Urea Nitrogen (BUN)	7 – 25	34 mg/dL	33 mg/dL	45 mg/dL
Glucose	65 – 99	123 mg/dL	172 mg/dL	106 mg/dL
Creatinine	0.7 – 1.3	9.81 mg/dL	9.71 mg/dL	9.61 mg/dL
eGFR (non-African American)	> 60	5	6	6
Urea Reduction Ratio (URR)	> 65%	64.7%	65%	62.2%

*1/16/2020 results from Comprehensive Metabolic Panel

Since I was on peritoneal dialysis prior to December 2019, test results are probably not comparable. Most numbers are comparable month-to-month except for the URR. I mentioned previously that dialysis clearance was low this month. The nurse told my nephrologist today that the dialysis machine was alarming several times on 2/13/2020, which may affect the clearance test results. I think they are going to retest this Thursday so hopefully the number comes up.

Even on dialysis, my eGFR is 5-6. I think the best it’s been was 11 when they tested my blood in the ER on 12/14/2019. I think the results in the table above are from before dialysis so the number is two days after dialysis. The 11 number was right after ~3 hours of dialysis so maybe the number is 12-13 if I completed my 3.5 hours session. Dialysis is supposed to give you a GFR of ~15 so that’s pretty close.

Night Sweating

Chinese people believe in “sitting the month” or postpartum confinement. The thought is that after the trauma of pregnancy, if you get sick, then the effect of the illness will stay with you for the rest of your life. Post-heart surgery, I feel like a bunch of things about my body has changed too. Most noticeable is weight loss. I lost a lot of weight after surgery and more than three months later, I’m still down ~30 lbs. I know my peripheral neuropathy is a lot worse than before, and I never started peeing that much after the surgery. Finally, even though I feel cold most of the time, I’m sweating a lot at night when I sleep.

Before, I thought the space heater in my bedroom was turned too high so I put a wifi switch on the plug and have been turning it off before sleeping. It definitely feels cold in the room when I have to get up in the middle of the night. Before surgery, I would use a thin blanket plus an old comforter to sleep comfortably. Now, with just the comforter and the heater off, I wake up constantly covered in sweat. I’m not even wearing pajamas, just a thin t-shirt and underwear. If I don’t sleep under the comforter, than it’s way too cold. I’m at a loss at what to do. Turn up the heat and use a thinner blanket? Open the window a bit so the room gets even colder?

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Last night’s sleep was dismal. I was tired after dialysis and walking so I took some naps, from 3:45 pm to 5:00 pm and from 9:00 pm to 10:00 pm. Then I could not sleep until 5:45 am and woke up at 7:45 am all sweaty. I can’t remember what I did for almost eight hours but it was a lot of YouTube and Nintendo Switch. That’s only two hours of sleep for today so I’ll need to find some time for another nap. Not good.

Walking 2/15/2020

It’s been a long time since I went out to walk. For awhile it was because I was at cardiac rehab. Then I had the outpatient surgery and needed the hole in my stomach to heal. I felt okay today after dialysis so I grabbed my dad and we did a small loop around the park. The park was pretty crowded since the weather was nice and it’s a Saturday. We walked 0.93 miles at a pace of 29’17”. I think my dad thought I was getting winded so he kept telling me to slow down. I also need to get a bit of exercise in while I can since I’m restarting cardiac rehab this coming Monday. UCLA Transplant Center still expects me to finish mid-March so they can clear me for kidney transplant in April. My friend/donor is currently grounded from traveling to China due to the coronavirus so we want to complete the transplant and recovery before he needs to travel again.

Pohono Trail

I finally finished the third and last solo virtual trail in Fitbit. Pohono Trail is another hiking trail at Yosemite and it had 62,500 steps. This seems to be a fairly difficult trail covering ~13 miles one way and with 2,800 feet of elevation change. Embarrassingly, it took me 21 days to complete since I had stopped walking daily due to the recent surgery.

Dental Appointment 2/13/2020

I had my second major dental appointment today. I mentioned the first appointment was very painful. Well, I just got home after a long day of appointments and my gums are hurting like crazy. I think it’s even more painful than when I was coughing non-stop after heart surgery. The pain is throbbing with each heartbeat and the whole left side of my face is swollen. Today’s appointment was to put in four permanent crowns and work on three more. I can’t believe I have seven new crowns on one side of my mouth. Just the dentist bill for the two appointments came to ~$5,600.

I was in the dentist chair for about 2.5 hours and had to run to an acupuncture appointment right after. As I was lying there on the acupuncture table, all I could think about was the intense pain in my mouth. I just took one Tylenol + Codeine pill; the bottle said I can take two but it also had an opioid warning label. It wasn’t even prescribed for a toothache but I need something strong to dull the pain. Right now it hurts so much that there’s no way I can fall asleep so I’m sitting here typing and hoping the pain will diminish a bit. I’m also hungry since I haven’t eaten all day but with one side of my mouth on fire and the other side with a fresh root canal, I don’t think I can eat anything without killing myself.

Acupuncture 2/11/2020 (updated)

The acupuncture session felt different today. I think the timer was only 35 minutes today but felt much longer. There was slight pain in both my feet and my right hand; usually after the first pinprick, I don’t feel anything afterwards. The was also a lot of numbness in my feet and some in my scalp of all places. I do think I have more sensation in my feet; I can feel the carpet texture more when I walk around at home.

*WebMD says this is for dental pain. My acupuncturist usually sticks a needle in each hand in this location for peripheral neuropathy.*

I asked the acupuncturist about it and she said she included a new acupuncture point today. She did seem puzzled at my description of the differences. I don’t think she expected me to feel anything different. We also had a good conversation at the beginning of the session. I was mentioning eating salad to be healthy and she said that she doesn’t recommend eating too much raw food. We then discussed “hot” and “cold” food in Chinese Traditional Medicine. I don’t know much about it but heard it discussed a lot by my mom growing up. She also said that students had to learn the Chinese names for traditional herbs. She know all their names using Pinyin but not in English.

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It’s about 5:00 am in the morning Wednesday and my hand still hurts if you press on where the acupuncture needle was. I told my mom last night and she said maybe the acupuncturist hit a nerve with the needle. Wait… isn’t that the point of acupuncture? If they’re not sticking nerve points, what are they aiming for with all the needles?

Restarting Cardiac Rehab

The last time I went to cardiac rehab was on Monday, January 27th. I had a dentist appointment on January 28th, and my mouth was hurting afterwards so I skipped January 29th. My outpatient surgery was on January 31st, and I haven’t gone to rehab since then.

I wanted to go this morning but I couldn’t get out of bed at 6:30 am when my alarm went off. I guess I got in the habit of not exercising after only a week. I have a endodontist appointment tomorrow so I can trying going Wednesday morning. The vascular surgeon said no heavy exercise for three weeks, and do not life over 5 lbs with my right arm for two weeks. His office was supposed to communicate that to the cardiac rehab nurse last week but I’m not sure if that’s been done. I think the rehab program won’t let me continue without the written note from the surgeon anyway.

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Oops, this was in draft since yesterday. I think I went to bed last night without clicking on post. I emailed the cardiac rehab nurse and she just called me back. I guess they did get a note from my vascular surgeon on February 4th. I can go in tomorrow but no arms exercises until the 18th. I told her I would restart tomorrow with cardio so I’m committed. A bit of accountability is good, otherwise I’ll sleep in again.

Cardiac Rehab Buddy

A coworker told me Friday that he has to attend the cardiac rehab program at St. Joseph Hospital as well. Since we’re both working, I guess we’ll see each other MWF at 7:30 am when the gym opens. It’s the only time we can go and still make it to work at a decent time. He had a pacemaker put in last year sometime. I don’t know why he needs to do cardiac rehab now; I don’t think he has any external factors like a transplant center asking him to go.

I did say that the gym was pretty small and I haven’t been too impressed with the program after five sessions. The facilities at Hoag Hospital seem much better equipped but I think St. Joseph Hospital is the closest program and kind of on the way to work. It’s probably impractical to drive to Irvine or Newport Beach for Hoag.

The Grief Recovery Handbook

After six sessions with my therapist, I think we’re moving beyond the introduction and goal setting stage. She thinks unresolved grief is playing a large part in my life, so we’re going to go through a book called The Grief Recovery Handbook. The subtitle of the book is “The Action Program for Moving Beyond Death, Divorce, and Other Losses including Health, Career, and Faith.” I just bought a paperback copy from Amazon. I’ll try to read a few chapters during dialysis tomorrow.

Sleep Confusion

Since I am going to work again today, I thought I would go to sleep early last night. I finally fell asleep around 11:00 pm but I’m up again at 2:00 am. Worse, I had no idea what time it was when I woke up. I forgot that my mom and I went out for dinner yesterday, and I thought it was dinnertime again. Only when I saw the actual time on my phone did I realize what time it was.

I was hoping my insomnia would get better once I started working. I thought maybe getting back into the work routine would help but I’m still only getting about three hours of sleep. This is better than when I was on PD; I was always super tired and sleeping all the time. However, I doubt three hours per night is sufficient long-term.

Acupuncture Costs

One of life’s greatest mysteries is healthcare pricing in the US. You have a list price that patients are supposedly charged if they do not have insurance, you have an insurance negotiated price, then there is the co-pay that the patient is responsible for. I tried looking at my dialysis and emergency room statements and I can’t figure them out. BTW, I have a MBA degree in Finance.

For acupuncture, the provider’s website says they charge $90 for the first visit (consultation), then $60 for subsequent visits. It doesn’t say whether that’s for acupuncture or chiropractor so I assume it’s both. My co-pay for each session is $40, so I thought my insurance is paid $50 for the first session, then $20 for subsequent visits. Nope.

*Insurance statement for second acupuncture session*

For the first visit, the provider billed $290, which has an insurance price of $125. Out of that amount, my insurance paid $85 and I paid $40. For subsequent visits, they billed $180, which became $75. My insurance paid $35 and I still paid $40. Why aren’t they billing $90 and $60 per their website? My insurance will only pay for 30 sessions. Does that mean they make less money if they bill me directly without insurance?

Surgical Mask Shortage

I read a several news articles this morning mentioning a shortage of surgical masks, especially in China and Asia due to the coronavirus outbreak. I’m not sure of the supply chain in the US but we seem to have lots of masks here at the dialysis clinic. Since I’m still using a chest catheter, each time a nurse connects or disconnects me from the dialysis machine, I have to wear a mask, as well as anyone else nearby. Since they’re supposed to be disposable, we go through a lot of masks.

When I was on PD, I was also supposed to wear a mask when connecting and disconnecting myself to/from anything. I usually don’t bother so I have a stash of leftover surgical masks. I feel kinda guilty for being a mask hog. Even though they’re not that useful in blocking out viruses, I’m sure they’re better than nothing and people can really use the few boxes I have a home.

This reminds me of 1994. I was working as a summer intern at an intravenous solution manufacturer. At the time, there was a cholera crisis at Rwandan refugee camps in Zaire. Lots of people were dying of dehydration and the camps really needed IV saline solution. We had tons of inventory in the factory, so much so that we were storing it in hallways and truck trailers in the parking lot. we weren’t building inventory for refugees but for lack of freight transportation, hundreds of people were dying. It kinda feels like that now with the mask shortage.

Sudden Leg Pain and Numbness (updated)

Sitting in dialysis today, my left leg suddenly started hurting. To lessen pressure on my lower back, I usually sit upright in the dialysis chair. Most patients either have their legs up or sit fully reclined since that raises their blood pressure and lessens the chance of falling out of the chair. When I raised my legs near the end of the session, there was a shooting pain from the left heel up to the back of the knee. Since I get nerve pain occasionally from peripheral neurophy, it wasn’t anything to worry about at the time. The pain subsided a bit until I tried to get up and walk. Then the pain came back. Unlike my normal nerve pain that comes intermittently, this was pretty constant. However, I was able to limp along and it seemed to get better the more I walked.

Fast forward until now. The pain was present most of the day but worse when I straighten out my leg. I had two medical appointments this afternoon and when I got home, I tried to take a nap. I then noticed that the numbness in both legs is a lot worse. Since I have so many medical issues, I don’t know if this is from acupuncture, side effect of medication, more neuropathy, or deep vein thrombosis (DVT); the surface vein in my left leg was removed for heart bypass surgery.

Worse, my dad needed to go to the ER right about now. He hasn’t been able to urinate all day even though he feels like he needs to go. I volunteered to drive them to the ER but my mom won’t let me due to my leg pain. My sister was out of the house so they took an Uber to the ER. Wait… if I can’t drive to the ER, shouldn’t I go to the ER and have my leg checked out? If the pain numbness and pain doesn’t subside soon, I may need to go to the ER.

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It’s been about four hours since I posted the above and the pain in my leg is mostly gone. The more intense numbness is still there but that seemed to be the trend lately anyway. I took some regular Tylenol too so hopefully it’s not just the drugs masking the pain.

My dad is back from the ER. They had to insert a foley catheter to relieve the pressure. It was likely an enlarged prostate causing the issue.

No Sleep 2/3/2020

It’s 4:13 am Monday morning and I haven’t slept at all. I went to be around 11:30 pm and basically watched YouTube for five hours. I would try to sleep between videos to no avail.

My right arm was wrapped up pretty tightly with a compression bandage all afternoon and evening. Around 7:00 pm it appears the bleeding has stopped. There is still a compression bandage on the incision site but not as tight. However, there’s pain in both my arm and my abdominal surgery sites. I did get the prescription for Tylenol + Codeine but I’m still just taking regular Tylenol. In addition, my mom has a prescription for Hydrocodone and my dentist gave me a prescription for Vicodin. I also have some leftover Percoset from my heart bypass surgery. That’s a lot of opioid painkillers I’m trying to avoid taking.

Anyway, the post surgery pain and more intense neuropathy in my feet is making sleep very difficult. I’ve already decided not to return to work today (Monday) since I’m still bleeding from a few surgery sites. I’m not going to cardiac rehab either so I have nothing scheduled other than a phone call with my insurance patient advocate.. Maybe it will be a day of naps..

Acupuncture Needles

I think this is the brand that my acupuncturist uses. I can’t figure out how much they cost. It seems to be $17 for 1,000 needles which would be 1.7 cents each. However, Amazon is selling a different brand of needles for $17.44 for 100 needles which is 10x the price. Anyway, it’s either 2 cents or 17 cents per needle. My acupuncturist uses 21 needles each time for my appointments.

I found a few more research papers, including some that included randomized control trials (RCT). Usually they find that acupuncture provides marginal improvements in whatever measurement of neuropathy they chose though it always ends with the need for more research. Other papers are a survey of existing research and most draw the same conclusion.

I saw a study that lasted 8-weeks, another for 10-weeks with treatments either once or twice a week, and one for 15-days. So far, I’ve only had six treatments for my neuropathy. My acupuncturist wants to discuss progress and remaining treatment plan in two weeks, which will be about nine sessions completed. Maybe acupuncture treatment has diminishing returns so you have to stop and call it done at some point.