I was supposed to start using my new fistula today but I checked out. I told the dialysis nurse to wait until Tuesday instead. While I was in the waiting room, two patients were talking about problems with their fistula. One patient has his completely blocked so he needs surgery. I guess I got freaked out so I’m avoiding it today.
Category: Dialysis
Peripheral Neuropathy 3/11/2020
I think the diphenhydramine in Tylenol PM does have something to do with the increased neuropathy in my feet and legs yesterday. I only slept from 6:00 am to 7:30 am this morning so I’m super tired from basically four days of no sleep. I did go to work while skipping rehab but decided to come home early after a few meetings. I got home around 2:00 pm and slept until 6:00 pm, then again after dinner from 8:30 pm until now-ish. I still need to sleep more but at least I was able to get a few naps in.
The numbness feels like it’s subsided a bit. My feet are still numb but it’s no so unbearable like it was yesterday. I read that the half-life of diphenhydramine is about 6-12 hours so all of it should be gone within 1-2 days. Good thing it’s metabolized by the liver instead of the kidney. Otherwise I’ll never get rid of it. The breathing sounds and cough is better too so maybe that is a result of the extra medication. Problem is that I still need to find a sleep aid if I can’t use Tylenol PM.
Also, even though it feels like the numbness is better, I still don’t feel great. The vascular surgeon wants me to ask the dialysis team to start using the fistula tomorrow. I think you have to sit very still in case the needle comes out, whereas the tubing is locked to the catheter. I don’t know if I’m ready for it with the current neuropathy levels and the need to move around in my chair.
Fistula Ready?
I had an appointment with the vascular surgeon that put in my fistula today. Last time I went and saw him, I had to wait over an hour. Today, the entire waiting room was packed with patients but they called me in while I was still signing in. I guess my appointment is super brief so they wanted to get me out of the way. The surgeon saw me after only two minutes and said the fistula may be ready for use. He then got a market to trace out the vein’s route through my arm so the dialysis techs know where to poke. I think I’m supposed to try using it this Thursday.
The vein splits into two further up the forearm so I’m supposed to tell the techs to use the portion between the small scar to where the vein splits. The tech told me that they would use only one needle first, which will further mature the fistula. The vascular surgeon also said that he will remove the chest catheter in his office when the fistula is fully matured. For my first chest catheter, I had to go to the main hospital to get it removed.
I thought it would be several more weeks until we starting using the fistula. The surgeon did say if the techs couldn’t get the fistula to work, we need to wait several more weeks. I’m afraid that by using it too early, they will damage it and I will need another surgery to fix it.
Peripheral Neuropathy 3/10/2020 (updated)
Wow, the numbness and tingling in my feet is driving me crazy today. It felt really intense this morning while I was trying to sleep. The combination with my chest pains kept me from falling asleep all night/morning. Now during dialysis, it feels even worse and I’m not sure why. My weight and fluids are not that high compared to last session.
I don’t know what to do. There’s still 2.5 hours left and I’m starting to feel like I did that time in December when I had to go to the ER. I don’t want that again.
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I asked the technician if I can stand up and stretch my legs and he said no. I think they’re really worried about low blood pressure and me fainting if I stand up. My sitting blood pressure is at 152/85 so I think it’s ok to stand. Anyway, he gave me a paper towel soaked in ice water to put on my head and neck. That helped to cool me down a bit but doesn’t do anything about my neuropathy. I feel a bit better and sitting up as much as possible to stretch my left leg but it still sucks. 2:04 left on the dialysis timer…
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There’s an old Hispanic guy in the chair in front of me. He’s confined to a wheelchair and I’ve never heard him speak English. He alternates between sleeping and looking over at me. I’m not sure what he wants.
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19 minutes left. I’m not sure how I lasted this long. My nephrologist came by on her rounds so that distracted me for 15 minutes. The problem is they lowered my dry weight some more to 90 kg.
16 minutes left. I was going to ask them to let me off a few minutes early since my session will end right at 1:00 pm and I have another appointment at 1:15 pm right across the street. It’s really busy in here though. I’ll try to put on the manual tie-on mask now to save time.
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It’s now 6:20 pm and at home. I had an appointment to see the vascular surgeon after dialysis. The plan was to go to cardiac rehab after that but I was so tired that I just came home around 2:00 pm. I then took a long nap since I did’t sleep this morning but when I woke up, the numbness and tingling in my feet was even worse, if that’s possible. I had to walk around the upstairs hallway in my house to try and get the feeling to subside.
Hopelessness
I read a post on Reddit where the poster’s mother is stopping dialysis. Typically, you can live about two weeks without dialysis depending on your residual kidney function. I haven’t thought too much about how close to death I am but it’s something that’s always in the back of my mind.
Some of my coworkers and friends comment on how “strong” I am, having to deal with all these health issues. Really I’m not. Lately, I’m dreading each dialysis session. When I’m sitting in the dialysis chair, I keep looking at the time remaining display wishing that time would run faster. The only thing that’s keeping me going is the potential for a live donor kidney transplant in the near future. The strong ones are those patients that don’t qualify for a transplant yet go to dialysis day after day, month after month, year after year.
I thought the Kidney Disease Support Group at Saddleback Church would help. I imagined a small group setting where patients would share their experiences and encourage each other. Rather, it’s more like a Q&A session for people just diagnosed with kidney disease. Maybe I’ve picked up one or two pieces of information but it really hasn’t done anything to help my anxiety or despair about my condition. Now that my therapist put me on hold due to possible insurance issues, I don’t have anyone to talk to.
More Fistula Nightmares
I saw another patient’s arm today while the technician was hooking him up to the dialysis machine. It’s even uglier and scarier looking than what I saw last week. He had several huge purple lumps the size of golf balls in his arm. The tech would poke the needles right into the middle of it. Meanwhile, one of the nephrologist checked out my new fistula and said it’s almost ready. Again, I hope that it won’t blow up at first use. Maybe the fistulas I’ve seen are super old and new ones aren’t that freaky looking.
I was going to place a picture here but they’re all too scary looking. Just Google “dialysis fistula” and click on images.
Dialysis 2/29/2020
Arg! The numbness in my left foot is driving me crazy today. It was not that bad this morning but started getting worse as soon as I sat down in the dialysis chair. I’ve been watching YouTube videos and thought a lot of time has passed but in reality, it was only about an hour. There is still 2:35 left on the dialysis machine. Where is my fast forward button?!
I’m in a new seat today. Not sure how the musical chairs work but I’m in the “other” corner of B pod. I hate sitting in the corners. You feel even more. Isolated from everyone and everything.
I also was able to take a clear look at another patient’s fistula. It’s in his forearm, purple, and about 1 x 2 inches in size. I hope my doesn’t end up looking like that or worse. It’s super ugly and gross.
Peripheral Neuropathy 2/27/2020 (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 Sick Day
My dialysis nurse was still out sick today. On Tuesday, I think they brought a MWF shift nurse in as replacement since I’ve never seen her before. Today, it was a different replacement nurse. She does work TTS shift and was actually my first dialysis nurse back in 2017. Everyone then rotated out after three months and our schedules never matched since then. I think she also had a baby too. Yes, she is Filipino.
Back then, I didn’t know about the schedule rotation so I though the nurses and techs were permanently assigned. I also thought I would be on dialysis for only a few months until I get a transplant. HA! Anyway, I gave my “team” some swag from work. I think I gave the nurse a mug and an offer to take her family on a factory tour at work. That was 32 months ago; I wonder if she remembers.
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I hope my current dialysis nurse didn’t get the coronavirus. That would be a disaster here at the dialysis clinic since most patients are pretty sick already.
New Headphones
I bought a pair of wireless earbuds for use during dialysis. I had received a pair of Apple AirPods 2 during Christmas and really liked them so I wanted to get a cheaper second pair. I ended up getting a pair of TOZO T10’s from Amazon for ~$32. Much cheaper then the AirPods.
They sound pretty good since they have rubber earpieces that squeeze into your ear canal. The bass is definitely stronger than the AirPods which just sit in your ear opening. Usually when there are multiple earpieces, I use the smallest ones for a better fit. However, I may need to change them since the earbuds keep falling out of my ears. I sat reclined in the dialysis chair for ~30 minutes and both earbuds fell out 5+ times. Apple stuff are usually really expensive but their industrial engineering is top notch. The AirPods hardly ever fall out of my ears, even during exercising.
Also, to get the T10’s to stay in my ear, I have to press pretty hard. Since the rubber earpieces are supposed to seal against your ear canal for noise cancellation, it pushes air in your ears and raises the air pressure. Not comfortable, especially if I’m trying to sleep during dialysis.
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I just read on TOZO’s website that you’re supposed to give the earbuds a quarter turn after inserting them in your ear. I guess I’ll try that first before changing the rubber earpieces.
URR Retest Results 2/20/2020
Finally, some good news. The previous clearance test came back as inadequate with an URR of 62.2%. I was afraid that they were going to extend my dialysis time again. However, since the dialysis machine alarmed several times that day, my nephrologist asked the clinic to run the clearance test again. Well, the results came back and the updated URR is 65.5%, which should be enough to clear me for another month. I really didn’t want to sit here longer then absolutely necessary.
Dialysis Blood Pressure 2/27/2020
I’m off to a bad start. First two sitting blood pressure readings are in the 190’s. I forgot to take the NIFEdipine ER pill last night since I fell asleep at 10 :00 pm. I did take all my blood pressure medications this morning but wasn’t sure if the ER effects carry over from last night. I guess it takes four pills to lower my blood pressure to normal levels.
I’m debating whether to take another 10 mg of NIFEdipine sin e blood pressure may get worse as some of the other meds get dialyzed out.
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Hmm, not sure what is happening with my blood pressure. I’ve been sitting up blogging so the reading should be slightly better. The last reading at 10:50 am was 164/89/60. Usually the readings start increasing aroun 11:00 am as the Metoprolol starts getting dialyzed out.
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The reading at 11:20 am was 151/82/61. Doesn’t make any sense.
Fistula Facts
One of the dialysis techs came by to check out my fistula. He said it looked and felt fine, then offered up some random information about fistulas.
- He said not to rush into using the fistula before it matures since it may blow out. If that happens, then I have to go back to the chest catheter. I didn’t ask him what happens if we’ve already removed the catheter. Also, I thought they (dialysis clinic + nephrologist) decided when the fistula is ready for use, not me.
- Even if the fistula matures, it could still blow out when used properly. I would rather keep using the chest catheter but everyone said I need the fistula.
- When the fistula is ready, they will start with only one needle in the fistula and connecting one of the ports on the catheter. I think this will continue to strengthen the fistula so it doesn’t blow out and fail. Not sure how long they will run with this “hybrid” connection. I guess the catheter is not going to be removed immediately.
- I need to exercise the fistula with a squeeze toy. The clinic gave me one that looks like a large pill to exercise and grow the fistula.
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.
Pre-Owned Private Jet
Speaking of private jets and expensive toys, I received an email at work form someone selling a 2006 Gulfstream G550. These are pretty large private jets and a 14 year old used one goes for about $15 million.
Interestingly, we (the company, not me) currently owns a Gulfstream G650ER and is in the market for a backup jet. First choice is actually a used G550 for sale by Chevron. I’m not sure how a random jet broker found my contact info… Google search metadata?
Anyway, the operating cost for these are pretty high. This website calculates it to be about $7,000 per hour assuming 400 hours per year. I think we’re looking to use it as a daily shuttle between office sites so ~2,000 hours per year at an estimated cost of ~$10 million.
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Traveling would be so much easier if I was still on dialysis and owned one of these jets. Dialysis at Sea uses Fresenius 2008K home dialysis machines on cruise ships to provide hemodialysis. I wonder if you can install and operate one on a private jet. I guess it depends on how air turbulence compares with ocean swells on a cruise ship. If you’re rich enough to own and operate a G550, you should be able to hire a private nurse for dialysis. You can hook up to the machine prior to take-off and finish dialysis while in the air. If you’re carrying your own machine and supplies, international travel should be feasible. You just need to come back to the jet for dialysis sessions.
There is zero information on the feasibility of getting dialysis while on an airplane flight. All the search results is about taking your home dialysis machine along on trips. I guess most dialysis patients don’t own a private jet.
Chaplain Intern
I just got a visit from the chaplain intern during my dialysis session. He seems to be a nice guy but very Korean. It was a bit difficult to understand him. He also said he was diagnosed with Parkinson’s Disease 11 years ago so maybe that affected his speech. I think he said he was with Korean Presbyterian Church and found it interesting that I went to a mostly Korean-American church but I’m not Korean.
He is walking around basically cold calling patients and talking to them. It was a nice 15 minute break but I only got ~80% of what he said. Since I’m at a non-profit Catholic hospital, I should be expecting more of these visits. I wonder if non-Christian patients will be as patient with him.
Entitled Patients
When you come in for dialysis, you are supposed to wait in the waiting room until they call you in. Each pod of 7-8 chairs only has one nurse and two technicians so sometimes the schedule can be a bit fluid. I’m supposed to start at 9:00 am and get hooked up by 9:15 am. They want you here 15 min early so sometimes I get called at 8:45 am, and other times not until 9:00 am or later. It all depends on the timing of getting other patients on and off the machines.
I always wait until they call me and there are usually other patients waiting too. However, I noticed that many patients just wander in whenever they arrive, or their caretaker/driver just pushes them into the clinic. Today, while I was waiting, two patients from my pod just wasn’t straight in without waiting to be called. It’s as if they’re too important to wait, and the staff needs to tend to them right away. The patient in the nice powered wheelchair got kicked out but the other person in a manual wheelchair was seated and connected.
I was called in around 9:00 am. The pod was super busy so I didn’t mind waiting. While the nurse was connecting me, several other patients came in without being specifically called in. Some were turned away, but those in a wheelchair just hung out and got in the way. My nurse was a bit flustered since she felt she needed to rush to get the other patients on the machine, which is not good for me. My catheter is a huge infection risk if they don’t clean enough between steps.
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A patient came in a second time without being called. They’re trying to get a patient off the machine to clear a spot so there’s nowhere to sit. Since he can walk, they kicked him out again to the waiting room. How hard is it to wait until you’re called? Do they also barge into busy restaurants as soon as they arrive and demand a seat? Go to the airport and demand a seat on the next flight without a reservation? Sheesh!
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.
Weight Gain 2/16/2020
My nephrologist dropped my dry weight for dialysis again. It’s now at 91.0 kg. I think I left dialysis yesterday at 90.8 kg and I’m already at 93.5 kg tonight. That’s 2.7 kg over and I have another whole day before dialysis. Since I’m wearing different clothing + shoes at weigh-in, I’m never sure what my starting weight is for dialysis. I blame all the protein shakes I’ve been sampling. I drank a bottle of the Muscle Milk I bought from Amazon, and a bottle of the Premier Protein I bought from Costco today. That’s 22 fluid oz or ~650 mL total, which adds 0.65 kg to my weight. Since we removed the PD catheter, I can’t use the leftover dextrose solution to cheat and remove fluid at home so I have to really control my fluid intake tomorrow.
Inadequate Adequacy Again
The dialysis nutritionist came by to tell me my labs were good, but the Kt/V numbest was inadequate. It was 1.16 this time; the minimum value is 1.20. Last time they increased my dialysis time by 15 minutes. They are going to redo the test but I’m probably looking at four hour sessions until my fistula matures. Like I said before, just when you think you life can’t get any worse, another negative surprise is just around the corner.
Life with chronic diseases 