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.

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.

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.

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.

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.

They finally renovated the lobby of my dialysis clinic. Their initial Medicare certification date appears to be 8/15/1977 so the center been around 40+ years, and the previous furniture in the lobby looks about that old. They also replaced the carpet with laminate wood flooring so it looks more clean and modern. For some reason, there are less chairs now so when the center is busy, there are not enough seats for all the patients waiting to be called.

They also covered the walls inside the clinic with huge murals of scenery from tropical islands. The mural on my side of the clinic is a sunset scene so everything is very orange. You can see a bit of it on the left in the photo below. The wall used to be just beige.

I drove to dialysis today by myself even though I was supposed to wait 24 hours. I was going to ask my dad to drive me but by the time I remembered, I was already on the road.

I showed my dialysis nurse the bandage on my right arm and told them I had the surgery done. A couple of nurses came by to take a look and they were more excited about the surgery than I was. I think they really don’t like using the chest catheter unless it’s absolutely necessary. One of the supervising nurses pulled out her stethoscope, listened to the surgery site, and gave me a thumbs up. Not sure what she was listening for but I’m glad it was good.

They continue to challenge my weight at dialysis. Even though my dry or ideal weight is 92.0 kg, they try to take more fluid out since they want to avoid edema or having fluid build up in the lungs. I left dialysis at 90.9 kg; that’s probably my lowest ending weight in over two years of hemodialysis.

I fell asleep early last night and woke up at around 3:30 am this morning. I thought I didn’t take my 30 mg of NIFEdipine ER before sleeping so I took another one. I then took all my regular medications this morning, including the 10 mg of NIFEdipine.

When I got to the dialysis clinic and measured my standing blood pressure, it was 90/60. Either I doubled up on the ER pill, or took it too late so it’s adding to the three medications I took this morning. That’s one issue with having too many meds. You lose track of which ones you took when sometimes.

The first blood pressure reading sitting down was 120/69 which is still a bit too low. It should increase when the Metoprolol starts getting dialyzed out by the machine.

==========

Ha! The machine too another blood pressure reading while I was clicking “post” on this post. It first came back as 78/50. I told the nurse that can’t be right so she tested again and it came back at 110/64. Better, but I definitely messed up my medication schedule this morning.

==========

So the systolic numbers goes really high right at the end. I’m thinking the 178 reading is wrong since it then drops by 40 points on the last standing measurement. With such huge variations in blood pressure readings over four hours, it’s all dependent on the level of medications in my bloodstream. I feel like I’m cheating each time I take the extra 10 mg of NIFEdipine since it’s like an emergency drug: works quickly and wears off fast. I measured my blood pressure yesterday around 2:00 pm and it was 192/100. All the morning meds probably wore off by then. I don’t think it’s good for my body to have blood pressure fluctuate like that.

I check the dialysis blood pressure measurements from the past few sessions and the drop in blood pressure for the last standing measurement is pretty large. That just makes prescribing medication that much harder since they can’t lower my sitting blood pressure too much in case I stand up and pass out.

Can you say orthostatic hypotension?

There are four “pods” at my dialysis clinic and each is staffed by a nurse and one or two technicians. I used to be in C pod previously but now I’m in B pod after switching shifts. They rotate the staff around so if you stay here long enough, everybody gets to work on you. I think the technicians rotate every three months and nurses rotate every six months.

Today is the first nurse rotation since I came back to this dialysis clinic. In total, there are four regular nurses and two supervisors that fill in when it’s busy, or if someone is out. Most are Filipino with one Hispanic and one Korean nurse. I know all of them pretty well because only the nurses can connect me to the machine because I have a chest catheter instead of a fistula.

One of the nurses said that six months is too short since you get to know your patients better over time. I have to explain to the “new” nurse my blood pressure history and why I’m on three medications since it’s all new to her.

I’ve been so focused on researching transplant centers that I didn’t realize Medicare rates dialysis facilities. I searched for my dialysis clinic, St. Joseph Hospital Renal Center, and they only have a 4/5 star rating for quality of patient care, but a 5/5 for patient survey. Looking at the rating details, I think they got dinged for a lower % of adult patients who had enough waste removed from their blood during hemodialysis. That explains why they want me to increase my dialysis time when my Kt/V result came back at 1.18 (should be at least 1.2). Across the street from my dialysis clinic is Satellite Healthcare Orange, which was my center for peritoneal dialysis. They have 5/5 stars for both ratings; maybe I should have gone there for hemodialysis instead of returning to St. Joseph. There is also a DaVita facility nearby. They have a 5/5 from Medicare but only 3/5 from their patients.

Some other interesting statistics:

As I was debating the fistula surgery, I noticed most of the patients at St. Joseph is getting dialysis through a fistula. From the data above, there’s more catheters at St. Joseph than at DaVita and Satellite. Medicare states that higher rate of fistula is better, and lower usage of catheter is also better. This also likely affected St. Joseph’s Medicare rating. Sorry!

For patient survey, DaVita got average ratings for kidney doctors and clinic staff, while St. Joseph and Satellite got better than average numbers.

Crap! Just what I need in my life right now… more time on the dialysis machine. My nephrologist came by today during dialysis and told me my last Kt/V result was 1.18 even though my URR was 65%. Minimum clearance for hemodialysis is 1.2. She was fine with the number but the dialysis clinic is unhappy. I think they are regulated very closely by the state department of health, and it looks bad if a patient is not getting adequate dialysis.

Since I’m still using a chest catheter, the maximum flow rate is 350 mL/min and I’m maxed out. A mature fistula can work at 600+ mL/min so more blood flows through the machine and filter. Starting next session, we’re adding 15 minutes each day to my dialysis time. It sucks but I guess it’s better than adding 30 minutes.

Incidentally, about 7% of body weight is blood so at 92.0 kg, I have about 6.5 liters of blood. At 350 mL/min for 3.5 hours, that means the machine can filter 73.5 liters of blood or 11.4 times my blood volume. That filter is not very good. In comparison, for a 70 kg male adult, blood flow through the kidneys is 1.2 – 1.3 liters per minute