Dialysis Chair Woes (updated)

It’s about 2:30 am. I woke up at 2:00 am and haven’t been able to fall back asleep. I’ve only slept about two hours so far. Of course, I can catch up on some sleep during dialysis but usually the fistula keeps me awake, and Tuesday is when the nephrologists do their rounds so someone will wake me up.

The dialysis center changed chairs since I started dialysis there three years ago. I think it was before I left for PD. I don’t remember having any problems with the older chairs. The new ones look the same but are brown instead of green. However, they seem to give me lower back issues. Usually the nurses wants your legs up so you can’t fall forward out of your chair. Sometimes that happens when your blood pressure drops too much and faint. With the legs raised, it puts a lot of pressure on my tail bone area and it becomes very sore in about an hour. I then have to put my legs down and sit up straight to relive the pressure. With PD, at least I get to sleep in my own bed.

*Ooh, individual cubicles with lots of storage area. Very nice.*

At least my dialysis center offers patients pillows and (heated!) blankets. When I was at the other dialysis center across the street for about a month, you had to bring everything yourself. No onsite pillows or blankets offered. I’m going to try to sit on a pillow today. The pillows are really flimsy anyway, and try a rolled up blanket as a headrest to see if that helps. Otherwise I end up walking out after the session like an old(er) man.

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Wow, list price of the Champion Series 54 medical recliner is ~$2,500. Why is everything so expensive in the world of medical supplies? My home office chair was only $150 from IKEA and I’ve slept in it before.

I think they should upgrade to a full-body shiatsu massage chair. The Inada one from Japan is $8,000 but it looks much more comfortable. And it reclines.

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Update: 7:32 pm

Well, that didn’t work out any better. I tried to sit on the pillow this morning and grabbed an extra blanket as a headrest. The pillow didn’t do anything since it was very flimsy. As soon as the air was squeezed out, it became flat as a bedsheet. The blanket-pillow was better since it provided more support but since I rolled it up to get more height, each time it fell down to the base of the backrest, it was impossible to retrieve and put back under my neck. Initially, this was with both arms free. After they stuck one needle in my fistula so I can’t move it, it was super hard to reposition the pillow and the blanket. I think my butt hurt more than before so I’m not sure what to do. Maybe I need to bring in a nice firm seat cushion to sit on.

Vascular Surgeon Callback

Still waiting…

This is the second time I’ve been waiting for a callback. I got an ultrasound on my fistula last week and the surgeon was supposed to review it and let me know if there’s anything he can do to fix my fistula. Since then, my dialysis nurse was able to stick me successfully on Thursday, and got one in Saturday.

Interestingly, the same surgeon put in my PD catheter. The surgery was fine and the wound healed great but I think the placement was so so inside the abdomen so I didn’t drain well when lying down on my back. The PD nurse said the same vascular surgeon did good work, but is kind of an arrogant prick.

Sigh. I was going to call the surgeon’s office today but got busy with work. When I finally looked at the clock, it was past 4:30 pm. I’m more of a procrastinator so I usually wait a few days before calling but I know the dialysis nurse will bother me about it tomorrow.

iHemo Dialysis System

I’m not going to comment on the fad of naming products iXxx after Apple’s iPod/iPhone/iPad/iMac.

This is something that came out of UCSF’s Kidney Project. I made a post at the beginning of the year. Over the years, I’ve made some donations to the project but I’m always disappointed in the lack of progress and funding by the government. Pur government spend a ton of money on all sorts of useless crap but can’t find a few million dollars for artificial kidney research that will save billion? Anyway, I read earlier that the project has made some progress on the actual filtering membrane but not the challenge of making a self-contained unit that drains waste to the bladder. I guess this is a good compromise for now. From what I read, they can implant the filtering device inside the patient’s body, then connect to catheters that will drain toxins and excess fluids using an external pump. This means no needles and no blood outside the body. It’s almost like peritoneal dialysis but with the diffusion filtering done in the implanted unit instead of using your abdominal membrane. Here is an intro video:

UCSF Kidney Project website

It’s not the same as a full implantable artificial kidney but it’s a good first step. It was enough for them to win a $500k KidneyX prize. As far as I know, the UCSF-Vanderbuilt project is the only one of it’s kind. There seems to be no one working on this issue.

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I stand corrected. There seems to be a lot of participants in the KidneyX competition. Hopefully some or many will develop into something viable for use to treat kidney failure.

Fistula Update 8/8/2020

Everyday is an adventure at dialysis-land. I found out today that Tuesdays and Saturdays are busier than Thursdays because some patients only come twice a week for dialysis. When I started, I was only on dialysis twice a week for three hours per session. Over time, this has become three times a week for four hours per session. That an increase of 100%.

Since it was busy, the nurse connected me via the chest catheter first so I get all my dialysis time in. Later, after I had fallen asleep, she came and woke me up to try and stick me with the needles. She used short 17-gauge needles again even though the throughput is less. The venous needle went in okay after some digging around but the arterial one wasn’t cooperating.. After a few tries, she gave up and another tech came to try. He stuck me a bit lower in the arm and was finally able to get good position. I think it was about 7:00 am by this time so only a bit less than three hours remain.

I was tired again so I slept some more. The nurse came by and woke me up at ~8:30 am because she wanted to flush and tape up my catheter. Then she changed her mind and decided to wait until the end of the session. Great, I got woken up for nothing. Anyway, disconnecting went mostly okay. The venous needle site bled through the first gauze bandage so they had to change me while I was applying pressure to stop the bleeding. I just took off all the gauze and the hole from the missed attempt is still bleeding after ~7 hours. Ugh. I hate this fistula. Almost makes me want to ask them to keep using the chest catheter regardless of the infection risk.

Also, the second tech that stuck me is a big fan of the company I work at. Last year, I bought for him a lot of logo’ed clothing with my employee discount. He kept asking about our stock. We’re a private company so the stock is not listed on any stock market. He said to give him a day’s notice if we ever go public. He wants in on the IPO shares. Sure, so does millions of other investors. Like I have enough clout to get additional shares in an IPO. Most of the time it’s like getting free money.

Divorce Care Group

I went to church tonight. I mean I physically showed up to a conference room in the church office for a Divorce Care group meeting. I think one of the pastor mentioned it to me several years ago but it’s the first time the group met since then. Unfortunately, there are only two participants, including me. There was a pastor leading the group, and two guests who were divorced, met at a previous Divorce Care group meeting, and got remarried to each other.

The course is supposed to run for 12 weeks and includes videos and discussion. I believe we are cutting it down to only four weeks. We talked for a bit, watched a short video, then the pastor threw out some questions for discussion. It was a good meeting, though having a few more participants would probably help the discussion. Also there is no remote option. I had asked about joining on Zoom or something but for this kind of group, remote participation is likely not ideal.

At first, I felt embarrassed even attending the group. It’s been just over 14 years since my divorce has been finalized. A lot of people think I should have gotten over it by now and moved on. I think I mostly just ignored the issue and never processed or grieved properly. That’s why after so long, I still have dreams and thoughts that pop up randomly.

As I mentioned before, I see a lot of patients with spousal support. I think that’s great if you have it. However, if you are single when you start dialysis, it’s going to be much harder to find a partner? Who wants to go out/get married to someone which such a high mortality rate, can’t travel anywhere, and needs to go to the dialysis center three times a week?

Post #666 – Dialysis and Religion

It’s just a number.

I saw a post on r/dialysis today asking dialysis patients about religion. Pretty much in line with Reddit’s demographics, mostly liberal young white males, most of the responses were from atheists and agnostics. There were some exceptions but the non-religious majority was quite noticeable. I was going to post a reply but discussing religion online seems to be a risky proposition with very little rewards. Still thinking about it. Currently there are only 34 comments on the thread since r/dialysis is not that popular of a subreddit.

Even if I don’t post it, I’ll come back and edit this post with my thoughts, most of which I’ve posted before.

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For me, religion has always been a personal thing. I’m naturally an introvert so going out and engaging strangers in evangelism is not ideal for me. Usually I like to work behind the scenes so I fit right in with sound engineering. Even playing the bass on stage, you’re basically at the back and no one notices you anyway. I’m also terrible with having a consistent prayer and quiet time. I usually get up too late, or just fall asleep at night. I’m not very disciplined when it comes to personal time. That just means my relationship with God is not as it should be. So when people at church talk about hearing from God, I’m usually clueless about it.

Of course, as a Christian, you think about good and evil, and why things happen. Theology says God has a plan that is too grand for humans to understand. We just need to trust that God is sovereign and all thinks work out for the good in the end. It sounds and feels good, but when you are in the fourth hour of dialysis for the third time this week, and you feel totally drained, those words are of little comfort. I talk about asking the “Why?” question all the time but there’s no answer yet. It’s a daily struggle between faith and the reality of living with a chronic disease that’s trying to kill you.

There’s also supernatural healing, which is discussed a lot in the Bible, and our church is a big believer in healing. I’ve been the subject of several church-wide prayers about healing for my kidneys, but I don’t there was any physical change. This is another challenging area for me since with God’s promise of healing, there’s hope. But how long does hope last? Three years? I’m already beyond that point. Five? Ten? Twenty-five years? I’ve also mentioned that this hope has affected my decision making about dialysis and managing my health, not always for the better in hindsight. The fact that I thought dialysis was temporary for so long probably prevented me from getting a fistula until now, and taking a huge risk in having the first “temporary” catheter for 20 months.

What’s real though is the support from my cell group. I’ve only know them for four years but they have been very supportive and a big help during my heart surgery recovery. It’s good to know that a group of people know your struggles and are praying/cheering for you. I share a lot with the group, stuff that I wouldn’t tell my family. Since I’m divorced, I don’t have the spousal support that I see many patients have so the cell group is the next best thing. They all seem to be much more spiritual than me so maybe I’m learning a few things as well.

In the end, I do think you need some kind of support while going through dialysis and the entire transplant waiting game. If you can get that through family or friends, that’s great. Church seems to be another place you can get support. Also, there is the question of what happens if you die from kidney failure? Do patients normally think about it since death is so close-by? What do atheists/agnostics believe about the afterlife? Do you just die and disappear? Verifiable or not, I believe religion tries to provide an answer to that question, and it’s one less thing for me to worry about.

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As of now, I don’t think I’ll post this on Reddit.

Fistula Update 8/6/2020

For the past 2-3 weeks, I’ve been using the chest catheter because the only tech that can stick me is out. I got used to having the use of my right arm again during dialysis, and no pain! With the proliferation of personal protection equipment at the clinic, I think the risk of infection with the chest catheter is lower than before. I’m also still waiting fo the vascular surgeon to get back to me on yesterday’s fistula ultrasound.

So about an hour into the session, my current nurse comes by with two 17-gauge short needles and said she wanted to try. I think she tried once before an failed. She goes ahead and feels for my veins for awhile, and sticks both needles in one try. The arterial one did hurt on insertion even though she used lidocaine, and the venous one hurt for the rest of the session but no bruises or leaks. Since she used 17-gauge needles (thinner), they could only run the machine at 250 mL/min max. So even though the dialysis wasn’t as effective, at least the fistula got used for three hours. Now what do I tell the vascular surgeon?

Appointment with Vascular Surgeon

I didn’t actually see the surgeon. Today was just an ultrasound of my arm. The tech was really nice and we were done in <15 minutes. She said my fistula looks normal but there were spots where the blood vessel narrows, probably causing higher flow pressures and pissing off the dialysis machine. She will show the results to the surgeon and they will let me know what he wants to do, if anything.

Right now is that awkward period where I don’t know if a donor transplant is coming soon, or never. If UCLA accepted by sister, then I can tell the dialysis center and my nephrologist to use the chest catheter until the transplant happens. But without knowing UCLA’s decision, I have to move on like the transplant is not happening, and I may need the fistula for five years or even longer.

Stretcher Girl Reappears

I just noticed today that stretcher girl is back. I actually didn’t see them wheel her in but saw the two guys leaving with an empty stretcher. When I looked over at the other pod, she was already in her seat. No idea what happened but obviously she is still not able to walk or drive herself to dialysis.

I was thinking that it may be cool to share some info on each patient so we can get to know each other, though HIPAA probably prevents that. Maybe just first name, age, and reason for kidney failure? My info would probably say “idiot’s kidney failure due to not taking care of his health.”

Sleeping During Dialysis

Like I posted earlier, I didn’t sleep very much or at all this morning. I arrived at dialysis super tired. I usually watch videos or play games, but today I put on some music and was out during the first song. I thought the senior nurse wanted to try and stick my arm again but when I woke up the first time at 6:55 am (about an hour into the session), there was nothing. I don’t know if she decided to skip today since I was asleep? I was going to do something else but fell back asleep again, waking up at around 9:00 am. That’s three hours of napping, during what felt like the shortest dialysis session ever. I usually can’t sleep on planes, which is murder during long Transpacific flights to Asia. I would be overjoyed on the rare occasion that I did fall asleep on a flight. Yeah, this felt like that.

My blood pressure was still weird. Since I only measured 150’s in the morning, I only took the Olmesartan as recommended by my nephrologist. However, the BP readings went up a bit at the beginning of dialysis so I took the Metoprolol as well. It started in the 150’s, even with both pills, and ended up in the 180’s. When I took the final standing reading, it was still 162/90. Usually I would take an extra 10 mg of NIFEdipine but did not do so today. I’m still at a loss with what to do with the mostly high, but wildly erratic blood pressure readings.

I did leave dialysis at 86.5 kg. You would think my blood pressure would be a bit lower with all that fluid removed.

Busy Dialysis Session

Today was a petty eventful day at dialysis. Nothing bad happened but just a lot of stuff came up. Since the one “reliable” tech was still out on medical leave, my nurse just plugged me in using the chest catheter. After about 30 minutes, one of the other senior nurses came by to try her luck. She managed to hit the blood vessel on the first try for both needles, but sadly the arterial one stopped working as soon as she hooked me up to the dialysis machine. I think when I moved my arm to a lower position, it changed the geometry enough that the needle wasn’t getting enough blood flow. The venous needle worked though so they used the catheter to pull blood out, and return it through the fistula. I guess one working needle is better than none.

I also came in at 88.9 kg. which is the least I ever weighted for dialysis. Since the rounding nurse lowered my dry weight to 87.0 kg on Tuesday, it meant we still had to pull about 2 kg of fluids out. I ended up at 86.7 on the way out of dialysis. I also found out that I’m only 5’10” and not 5’11” so any BMI improvements due to weight loss is offset by the shorter height. I can’t win…

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Almost forgot. The dialysis nutritionist came by to give me a phosphorus quiz. I guess they’re doing an education program since I overhear a lot of patients have problems with their phosphorus levels. For the first two years on dialysis, I was usually slightly above the 5.5 mg/dL upper limit. When I was on peritoneal dialysis, that number shot up to 11 since the process wasn’t working. Recently, I’ve been just below the upper limit, and actually got a 4.6 during the last labs on 7/16. If you are consistently high, in the 7-8 range, that may disqualify you from a kidney transplant. How ironic.

Anyway, I got 8/10 on the quiz. Some of the questions were poorly worded but I’ve read a lot online about phosphorus and it’s effects on your body. The nutritionist went over the answers and her spiel anyway. Her voice is really loud so each time she talks to a patient, you can hear her everywhere in the dialysis center. She even pulled out a diagram on how parathyroid hormone is regulated in the body.

*The chart I was shown wasn’t this complicated but it was similar*

Reddit r/dialysis

There seems to be more and more messages of despair and hopelessness on the r/dialysis subreddit. Before, it was mostly people asking more experienced dialysis patients for advice, but recently, there seems to be a lot of posts where the OP is talking about stopping dialysis or committing suicide.

I think the combination of going to dialysis and the recent COVID-19 outbreak has really stressed out a lot of patients. Admittedly, dialysis was already a pain-in-the-ass, having to go to the clinic three times a week. However, the pandemic adds a whole new level of risk to everything plus social isolation. My social worker kept stressing the importance of continuing to work if possible, and maintaining my support groups. Well, now I’m working from home everyday, I don’t get to see my co-workers. I have co-worker I’ve known for 9 to 20 years, and they do act as social support sometimes. My cell group at church hasn’t met in person since March, though we “meet” weekly on Zoom. It helps, but nothing like sharing a meal with friends. I can see how this environment can get super depressing really quickly.

I’m not sure the public knows the fear and isolation affecting dialysis patients now. Since nobody seems to know for sure, the fear is that any exposure to the coronavirus will kill you so you stay away from everyone and everything. I still get take-out food but the places I visit are either curbside pickup or drive-thru. I go to the supermarket/pharmacy on rare occasions but always with a mask and lots of sanitizer. Even with a vaccine coming out soon, I think life for dialysis (and other seriously ill) patients have permanently changed for the worse.

Fistula Update 7/25/2020

I’m disappointed that no one at the dialysis center wanted to try to stick me today. The one tech that have been successful is still out. Usually the techs lay out the fistula needles on my chair. They didn’t even do that today; they only prepped supplies needed to connect me with the catheter. I thought at least someone would try to stick me since it can be done. I guess I’m using the catheter for the next week and a half.

Cost of Dialysis

I finally got my first dialysis bill with Medicare. The statements are all from my work insurance, which is basically Blue Shield of California. There is a huge discrepancy in pricing for different insurance carriers.

Month	February 2020	March 2020	April 2020
List Price	$33,895.24	$34,716.73	$34.277.23
Blue Shield Price	$25,590.89	$26,211.08
Medicare Price			$4,163.32

Statements from Work Insurance

I’m only seeing what my insurance paid out. For February and March, they paid ~$26k since I’ve hit my out-of-pocket maximum for the year. For April, I guess Blue Shield know the Medicare reimbursement dollars and they paid out only $837.98, which is ~20% since Medicare pays 80% of medical bills. If the numbers are correct, then my work insurance negotiated cost is over 6x what is paid by Medicare. For April, with 13 days of dialysis, the comes out to ~$320/session for Medicare. This is close to what a coworker told me (he used to work at Davita). The “cost” to Davita for each hemodialysis session is ~$280 so they don’t make much money from Medicare patients, hence the price gouging for patients with commercial insurance. Do they charge $34k/month for patients without insurance?

Stretcher Girl, Part II

The girl that has recently been coming in to dialysis on a stretcher is no longer here. I just noticed that she hasn’t been showing up for two weeks now. Hopefully she got a transplant or transferred to another dialysis clinic.

I know the mortality rate is pretty high for dialysis patients. Hopefully she is ok.

Mortality rates vary depending on the kidney failure treatment. After one year of treatment, those on dialysis have a 20-25% mortality rate, with a 5-year survival rate of 35%.
https://pharm.ucsf.edu/kidney/need/statistics

As I was walking out of dialysis Thursday, I noticed another patient being wheeled on a stretcher. Ugh, is that becoming more common? I don’t remember seeing patients on stretchers before stretcher girl above.

Fistula Update 7/23/2020

Another failed attempt today. The same tech that usually sticks me is out again so one of the tech with the most seniority tried today. He was sometimes successful when we first started using the fistula but has been in a different pod for the past 3 months. He tried the arterial needle twice, was able to get some blood, but no flow. He used a short 16-gauge needle each time, and it hurt pretty bad the second time. Anyway, he gave up after two tries and we went with the catheter again. I held the gauze for about 10 minutes, let go, then promptly bled all over the chair. He rushed back, put a new gauze on the opening, and I held it for 15 minutes which stopped the bleeding.

I’m barely tolerating the dialysis sessions. I’m at four hours on the machine at 350 mL/min flow rate. Now I have to deal with the erratic needle sticking each session as well. Sigh… and still now word from UCLA on accepting my sister as a kidney donor.

Fistula Update 7/21/2020 (updated)

I think the tech that usually sticks me is out so they used my chest catheter today. No one else even tried to stick me. That’s fine with me since the fistula area was itchy all weekend. By using the catheter, I get a break from the constant dull pain in my arm. I understand there is greater risk of infection from using the chest catheter but I’d like to see the statistics from my dialysis center. They seem to be pretty diligent in infection control and I did use the previous catheter for 20 months without any issues. The vascular surgeon hasn’t called me back yet. Not sure what’s happening with that.

Nephrologist came by just now and dropped my dry weight to 87.5 kg. I’m still not exercising that much so it’s probably due to not eating too much. For example, last night I skipped most of dinner because I felt close to throwing up again due to the strong garlic flavor in both dishes my dad cooked.

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Update: 7/24/2020

Got through to the vascular surgeon’s office. Appointment is set fo August 5th. Maybe this will get the dialysis nurse off my back.

Weight Update 7/20/2020

I may as well put my weight history up today as well. The nephrologist lowered my dry weight by another 0.5 kg to 88.0 kg last week. I think it’s because my blood pressure is still high, and my ankles are a bit swollen, mainly because I had to work a lot and sat around too much. I haven’t been eating that much so I should see some weight decrease unless I’m retaining too much fluids.

The trend lines are at ~89 kg. I left the dialysis center at 87.4 kg this past Saturday, which is the lowest ever since I started dialysis. I haven’t cramped yet during the past 9 months so it’s likely they can drop the weight some more.

Sleeping During Dialysis

The session went by quickly today. I usually read or watch a video on my iPad but today, it was all music and napping. I think I fell asleep for the first after returning to hemodialysis at the clinic. It was even caught by my Fitbit.

The nap was only about two hours but it’s the longest nap ever (at dialysis). I wish more days can go like this so I won’t feel the boredom of sitting for four hours. Some of the awake period is probably when the blood pressure readings were taken. I was on the chair from about 5:45 am to 9:45 am.

Fistula Update 7/18/2020

Today, the needles went into my arm very smoothly. The tech got both needles in on the first try so it only took about 2 minutes from start to finish. My arm also didn’t hurt that much during the session. However, I think the venous needle caused a small bruise, but it’s mostly gone now. My arm is getting pretty scarred.

The arm is getting pretty lumpy too as the vein is getting bigger. You can feel an hear the blood rushing through the blood vessel in my lower arm.

I’m still waiting for a call from the vascular surgeon. I think they may want to do an ultrasound to see what’s up with the fistula and why sometimes it’s difficult to get the needles in right. Until then, the chest catheter stays. Here’s a photo of the last one they removed about an year ago. Catheter is on the left; it runs from the right side of my chest across to the heart through one of the large blood vessels (vena cava?).