2020 (updated)

While washing up this morning, I was thinking that my neuropathy wasn’t too bad. It’s gotten a lot worse during dialysis, especially the left foot. It’s really been bothering me all morning and there is still one hour left on the dialysis machine. I also have a long (and probably painful) dentist appointment right after dialysis so I don’t know how I’m going to sit still for two more hours after four hours of dialysis.

I really think the acupuncture experiment is a fairure. I do believe the feeling in my right foot has improved a tiny bit, but the apparent increase in numbness intensity is making sitting and sleeping more difficult. My worst fear is that there will be no improvement in the peripheral neuropathy after the kidney transplant surgery any my quality of life will still be terrible.

That and knowing the transplanted kidney will fail in 10-15 years is pretty depressing.

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The dentist appointment ended up lasting 3.5 hours so all together, I spent almost eight hours on my ass all day. The pain wasn’t too bad during the dentist appointment and I took a codeine pill when I got home so everything is okay so far. The neuropathy hasn’t let up though. Both my feet are pretty numb right now and difficult to ignore. I managed to sleep for an hour while on the codeine pill. Not sure how I’m going to fall asleep tonight.

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.

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?

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?

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.

Acupuncture 1/30/2020 (updated)

Today’s appointment was really long. I think she reset the timer three times so I was lying there for almost 45 minutes. Once again, I think I felt more numbness but also what feels like pressure on my big right toe. I also noticed, or think I noticed, more feeling at the bottom of my left foot though the numbness seems more intense. This time, I also felt a bit of pain at the top of my left foot when I move it. I thought I may have hurt it walking but the pain went away when she took out the needles. Since I can’t feel the needles going into my feet, I counted them as she is removing them. There were 16 needles inserted into both legs/feet.

On the way out, we made appointments for the next two weeks. I am taking next Tuesday off in case I can’t drive yet from tomorrow’s surgery. The acupuncturist said let’s reevaluate my progress after two weeks to see if we need to schedule more sessions. That seems overly optimistic; I still can’t decide if there is any tangible difference in my neuropathy from acupuncture or if it’s all imagined.

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I just tried taking a nap and could not fall asleep. The tingling sensation in my feet is very hard to ignore even though I’m dead tired. I hope I didn’t mess myself up with acupuncture and made my neuropathy worse. I have small group for church tonight, then a trip to my dentist’s house to remove the temporary crowns. Probably won’t get home until 11:00 pm and I’ll need to clean up (wash) for surgery tomorrow.

Acupuncture 1/23/2020

Today was my fourth acupuncture session and it was much longer. Usually the acupuncturist sets a timer and leaves the room. Today, I think she set the timer a bit longer but also had another client/patient in a different room. I can hear the timer go off but she didn’t come to pull out the needles until 5-10 minutes later. Instead of 25 minutes, it felt more like a 45 minute session today.

At the beginning, when she stuck the needles into my scalp, one of them stung pretty bad. She said it may have hit a hair follicle. Also, for the first five minutes, I felt a pinpoint pain in my left shin that throbbed with my heartbeat. I was going to hit the bell to bring her back but it subsided after 5 minutes. Finally, about halfway through the session, I could specifically feel the numbness increase around my right big toe. Typically the numbness is all over, like a large sock. I believe this was the first time that the numbness felt localized. I’m not sure if it meant anything but the acupuncturist was kind of excited when I told her. She is going to leave the needles in longer in future sessions to see if it will have more effect.

*Just kidding. i think I only got three needles in the head.*

I did feel more numbness while I was laying there but couldn’t tell if it was real or if I just imagined it. I which you could objectively measure sensations like pain or numbness instead of relying on an subjective feeling scale.