Biohazard

There are these huge biohazard bins at the dialysis center that gets replaced every so often. I think the waste deposited in the bins are incinerated; not sure if it’s done at the hospital or offsite. There is a lot of hazardous waste since almost everything in the clinic is contaminated by patients’ blood. For me, it’s double the waste since I’m using both access points: catheter and fistula.

For the catheter, first they have to pull the leftover anti-coagulant, in my case it’s argatroban, which uses two locking syringes. These get filled with blood and tossed.

When the fistula is used, the needles are also disposed in the blue bins after dialysis. On Tuesday, the tech had issues inserting the needles in my arm and had to used up four needles instead of two. There’s also the small syringes used to inject lidocaine. Finally, all the tubing and dialysis filters go into a bigger red bin for disposal. There is a crazy amount of waste with dialysis. This was also true when I was on peritoneal dialysis at home.

Blood Pressure Variability

My experience with blood pressure and medication has been a freak show. When I was previously on hemodialysis a year ago, my blood pressure would drop during the session, and often it would be too low when I was done (<100 systolic). I would feel lightheaded and the nurses wouldn’t let me leave in case I fainted and crashed my car.

Fast forward to heart surgery. When I got back on hemodialysis, the blood pressure was still low-ish, but quickly increased until I was hitting 180/100 consistently. We started adding medication from just Metoprolol to including Benicar (Olmesartan) and NIFEdipine, both 30 mg ER and 10 mg capsules. Post a-fib and ablation, my blood pressure was still high so last week, the rounding nephrologist told me to start taking the 30 mg ER NIFEdipine again. For the next few sessions, my blood pressure has been low when I walked in, typically in the 100/60 range. This would increase some but limits the amount of fluid that can be removed during the session. So now, I have to skip the evening NIFEdipine before dialysis (M/W/F), while keeping the 10 mg capsules for emergencies. Confusing…

I also got my dialysis dry weight dropped by another 0.5 kg to 88.0 kg. My ankles are still pretty swollen from edema so maybe this will also help drop my blood pressure further.

Fistula Update 7/14/2020

The tech who has been sticking me consistently had problems today with the needles. He ended up using four needles to get good flow on both arterial and venous connections. There is also a difference of opinions on what I should do. My nurse and (assigned) tech has been harassing me to go see the vascular surgeon. I’m not sure what he is going to do when I tell him the dialysis center is having problems. I don’t want another surgery on my arm. At the same time, the head nephrologist came by today and asked me to get my chest catheter removed. The same vascular surgeon said he will remove it in his office. The last time I had to go to the hospital; it was just the pre-op area but still took 4-5 hours.

Ugh. I’m so done with doctor appointments.

Fistula Update 7/10/2020

My dialysis center rotated techs this week so there are two different techs in my area. I know all of them since they rotate every three months but since the person assigned to my chair has not seen my fistula before, she wanted to try and stick me. Also, they don’t even bring out supplies for hooking up the chest catheter; it’s all stuff for the fistula.

She tried Tuesday and was not successful so she called over the tech that has been sticking me for the past few weeks. Likewise, she was unable to hit the vein yesterday so she call the other tech to help again. However, since she made several attempts already, when the other tech finally hit the vein, my arm was already pretty sore. He also had some problems with the arterial needle so my arm was hurting pretty noticeably for the entire four hours.

At the end of the session, when the tech pulled out the needles, the arterial wound would not stop bleeding. I was applying pressure with a gauze pad but blood kept flowing out of the hole and made a mess. I’ve seen this happen to other patients but to experience it was weird. We finally managed to stopped the bleeding and I sat for 20 minutes applying pressure to the needle sites.

Fistula Update 7/4/2020

Happy 4th of July!

This is my 3rd anniversary for dialysis. I started hemodialysis on July 5th, 2017.

A different nurse tried to stick me today and came up dry. Shehad to call the recharge from another unit to finish inserting the needles. Since he had to dig a bit, it hurt a lot more than the two previous day’s.

Second needle insertion. Scary looking.

Fistula Update 7/2/2020

The same tech was able to get both needles into my fistula today as well and we ran the machine at 350 mL/min. He did mention that starting Saturday, another tech will try to insert the needles so hopefully he has good luck as well. They have been using the standard 16 gauge needles that should sustain higher flow rates so I’m going to ask them if we can run at 400 or 450 mL/min and possibly cut down on the dialysis time.

Fistula Update 6/30/2020 (updated)

Woohoo! One of the techs that was the first to try and insert needles into my fistula tried again today. Since everyone thinks my veins are both deep and moves around a lot, all the techs try to push the needle perpendicular to my arm to go deep, then dig around to get the blood to flow. This is weird since you can clearly feel the vein right below the skin layer. Anyway, the tech went shallow and got both needles to flow on the first attempt. One of the needles did hurt for the four hours if I moved my arm slightly but they were able to run the machine at 350 mL/min. Sigh… finally. I’m hoping this trend continues so I don’t have to have another surgery on my arm, and they can take out my chest catheter so I can take showers again.

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The arterial “wound” is still bleeding after an entire day. I swapped out two band-aids and it has soaked both of them. I think it’s finally stopped bleeding. I’ve seen “accidents” at the dialysis clinic where blood is squirting out of the arterial needle prick point resulting in a huge puddle of blood on the floor. I hope I don’t get that at home.

More Despair

I feel like I’m losing control. I’m sitting in dialysis and everyone that came in at the same time this morning are done except me. At 4 hours, I think I’m here the longest. The nurse is also harassing me to call the vascular surgeon about my fistula which means more surgery. Without a donor in the pipeline, there is no way out of my nightmare.

I just want all this to go away.

Stretcher Girl

There is a female dialysis patient that I’ve seen a few times before. When most of the patients are old and in wheelchairs, a young girl in her 20’s is really noticeable. Not sure how long she’s been here at the clinic but she seems to know all the nurses and technicians.

Anyway, recently she has been coming in on a stretcher. It seems she is unable to walk on her own. I don’t know if it’s temporary or permanent. Also, why a stretcher and not a wheelchair/scooter? I hope it’s just temporary.

Fistula Update 6/23/2020

Sigh… fistula didn’t work again today. It did work well last Saturday however they were able to run at 350 mL/min through two needles. I think the nurse really wants me to talk to the vascular surgeon again but he did say that he wasn’t sure the fistula will work when he operated the first time. I’m just tired of all the surgeries.

I wonder what they would do if I didn’t have a chest catheter.

Lab Results 6/4/2020

Surprisingly, the labs I got for my cardiac ablation procedure tomorrow showed up in the St. Joseph online portal, even though I had the labs done at St. Jude Hospital in Fullerton. I guess since they’re part of the same hospital network (Providence), all the labs show up together. Anyway, I tested negative again for COVID-19. This time, they swabbed both nostrils and held the swab for 5 seconds on each side. Ouch.

I also had a basic metabolic panel and CBC w/differential done. The surprising item was my creatinine levels. It’s still really high but the result came back at 4.9 mg/dL, which corresponds to a eGFR of 13. The last time my creatinine was that low was back in 2016, a year before I started dialysis. Here is some ancient history:

Test DateCreatinine (mg/dL)eGFR
3/25/20151.8443
4/29/20152.039
6/3/20152.727
7/6/20152.5229
8/9/20153.4220
8/14/20153.6519
8/24/20152.7426
10/19/20153.0823
11/9/20153.1322
1/11/20163.2621
2/14/20163.3221
5/17/20164.514
7/8/20164.7214
8/18/20165.0912
8/28/20165.0413
9/29/20165.5511

Yeah, I was basically getting labs done monthly or more. It was about this time in mid-2016 that I started the transplant listing process at St. Joseph, then transferred to UCLA.

I’m not sure what the numbers represent for the latest test. If I was still at 13 eGFR, I could probably stay off dialysis but since my urine output is basically still zero, I won’t be able to get rid of excess fluids. I also don’t know if the readings are a measurement of dialysis effectiveness, though most of my recent readings have been in the 5-9 range. I think I asked the nephrologist how I would know if my kidneys healed themselves and the feeling I got was that it never happens for chronic kidney failure.

Blood Pressure 6/6/2020

Sigh. Blood pressure is all whacked again. When I measured it this morning,it was 156/108/120 so I took all three medications. The last two readings at dialysis were 89/68/61 and 100/61/65. I think it’s not reading correctly due to the arrhythmia but I do feel a bit dizzy sitting down. Maybe I should not have taken the Nifedipine this morning.

Fistula Update 6/6/2020

Another day another person trying to stick a needle in my fistula. Today, it was one of the senior nurses; my regular nurse is on vacation today. She ended going up further on my forearm and was able to get a good stick. It did hurt when she tried to push fluid back so we’re using it to draw blood and use the catheter to send back.

Also she didn’t use lidocaine so it hurt a lot when she jabbed me.

I Hate My Fistula

Having had my first chest catheter for 20 months, I understand the dangers and disadvantages compared to a fistula. I was really careful about not showering and keeping the exit site dry. However, there was never any pain while there is constant pain with the fistula. On Tuesday, they went with a larger 16 gauge needle. The second attempt didn’t work so the tech stuck a third needle higher up on the arm.

3 needles

At least they were able to run the machine at 350 mL/min, the same speed as my chest catheter. On Thursday, he was unable to get a good placement for the arterial needle and it hurt a lot when he tried to push some blood through. He also thought he infiltrated the vein so he pulled out the needle and I basically bled everywhere. Sigh. This is what my arm looks like after 4 months.

The scabs/scars are pretty much permanent. Since my donor was permanently rejected, I guess I’ll need to use the fistula longer than I first thought.

Heart Transplant

Not me. I just found out a long-time coworker was just placed on the list for a heart transplant. Yikes! That seems like an order of magnitude worse than my sucky situation. At least I can survive 10+ days without dialysis. I doubt one has more than 3 minutes if your heart gives out.

I was getting a bit depressed lately with my arrhythmia and now a blood blister but this gives me much needed perspective. I’m looking around the dialysis clinic now and even with all my medical issues, I’m probably one of the healthier ones here.

New Dialysis Time

I just got a call from the dialysis social worker. She also seems to manage the dialysis center. Due to COVID-19, they need to clear out an isolation ward even though there are no cases yet. At the dialysis clinic, we have four “pods” with different number of dialysis chairs. D-pod is the smallest with four chairs, and they’re making it the COVID-19 area. To do so, they need to shuffle the schedule around. Currently I am in B-pod during second shirt. Since I drive myself, she thought I would be more flexible. I told her I didn’t care what time I have to go in so starting next week, I need to be there by 5:30 am. Since I’m not getting any sleep anyway, this way I can get it over with and maybe even go to work or other appointments on Tuesdays and Thursdays. And whenever we get out of quarantine, I can have Saturday lunches again. Yay!

Fistula Working Again

One of the older techs came by to insert the needle in my fistula. He was on vacation for the past two weeks and I heard he’s been at that dialysis center the longest. Anyway, it still took him about 3-4 tries to get the right vein. They still used only one needle at 250 ml/min, but dialed the time back to 3:45. My nephrologist was doing rounds today and she didn’t want to bother with the extra 15 minutes.

You can kind of tell the vein is getting larger in my arm. There is a definite bump in my lower arm where you can feel the blood rushing by all the time. And it’s noisy. If I sleep on my right side and my arm is anywhere near the pillow, I can hear the blood whooshing by.

Dialysis Recap: 4/25 to 4/30

Lots of weirdness at dialysis this past week. On Saturday and Tuesday, they were unable to hit the vein accurately to use the fistula. I actually got stuck three times in the arm on Tuesday but none of them were good enough. The head nephrologist checked out my fistula on Tuesday and said it felt good; he wasn’t sure why we’re having so much problem using it. On Thursday, they were drawing blood for clearance tests so we only used the chest catheter. However, my dialysis machine broke down with about 40 minutes left in the session so they just disconnected me. The plan is to redraw blood on Saturday so no fistula again.

The nephrologist lowered my dry weight again to 88.5 kg. He thinks I may have some fluids in my lungs and lower legs. I haven’t been eating that well so I should be losing weight; maybe the weight is being maintained by excess fluids. With a lower dry (targer) weight yesterday, my blood pressure was actually in-line during the entire dialysis session. I think I started at 128/70 and ended at 123/71.

One of the patients on the same shift as me was taken out of the clinic two days in a row by paramedics. I hope he’s okay but that’s not a good sign.

Fistula: Missed Again

My dialysis clinic tried to stick my arm again today. The tech tried a few times but was able to finally hit the vein. However, it hurt a lot, even with lidocaine. The needle was only in for five minutes but hurting more and more, and the machine was giving low pressure alarms. Finally, the decide to pull the needle since the vein may have collapsed. Right now, both tubes are connected to the chest catheter. The needle insertion point also has sharp pain when I cough. That’s new.

My right forearm

This is my arm yesterday. There are two post-op scars and a bunch of pinpricks. The two higher up in the arm were the original attempts. Then they moved down the arm and you can see at least seven needle scabs.