I’m in the midst of a pretty serious neuropathy attack. This time it’s the inside of my left foot. The jabbing pain is pretty intense that I can’t even sit up straight when the pain hits. It’s coming anywhere from 15 to 30 second intervals.
Usually the only thing that helps is a bit of walking, either outside, on the treadmill, or even just wandering in the upstairs hallway. Well, due to some heart weirdness, I’m running out of breath really fast. I went walking on Saturday for a short 1/3 mile and had to sit on the curb twice, severely out of breath. Today, even walking slowly in the hallway tired me out.
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.
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.
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.
Ugh. Another not so great meal choice. This time its the Springtime Chicken Pilaf.
The taste is a bit strong. I’m not sure whether because of the way it’s seasoned or if it’s getting close to the expiration date (tomorrow). The chicken was okay initially but was pretty dry near the middle of the piece. The pilaf was kind of mushy and the peas didn’t taste fresh. I got through about half-way through the chicken so I’d give it a 4/10.
I got three more of them that I have to eat tonight or tomorrow. I’ve already decided to skip next week’s order. I’ll likely end up cancelling my subscription as well since I can get decent take out for the $9/meal they are charging me.
With only five days to eat five more meals, I tried another one tonight. ( wasn’t too adventurous so I heated up the Chicken Teriyaki.
The pictures on the website led me to believe that there would be two compartments: one for the chicken + rice, and one for the vegetables. Nope. It was all mixed into one. This is what it looked like coming out of the microwave oven:
I only ended up eating three bites. It looked, smelled, and tasted terrible. The rice was not cooked (hard) even thought I following the heating instructions exactly. Like all microwaved teriyaki dishes, it had this strong odor, not at all like teriyaki dishes from restaurants. I ended up nibbling on the chicken pieces and almost threw up again. After 15 minutes, I tossed about 95% of the dish. I would give it 1 or 2 out of 10 and I’ve also decided I’m done with Freshly. I’m not ordering from them ever again.
Nutritional Item
Chicken Teriyaki
% DV
Serving Size
354 g
Calories
420
Total Fat
13 g
17 %
Saturated Fat
3.5 g
18 %
Trans Fat
0 g
Cholesterol
105 ng
35 %
Sodium
1,100 mg
48 %
Total Carbohydrates
49 g
18 %
Dietary Fiber
5 g
18 %
Total Sugars
17 g
Vitamin D
0 %
Protein
26 g
Calcium
6 %
Iron
15 %
Potassium
35 %
I guess the nutritional information doesn’t matter that much if you don’t actually eat any of the dish.
Everything has been fine until this evening. After throwing up again at dinner, I tried taking a few measuments with my EKG. The heart rate is pretty normal but the beat is irregular again. The EKG analysis thinks I have a-fib, again.
Here is one of the EKG readings. In row 2, it’s obvious that beats two and seven are a but early. I don’t know when this started but I did have a huge blowup with my parents during dinner. Maybe the a-fib us temporary due to the extra stress.
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I just took a few more readings and they came back normal. Hmm… maybe the previous a-fib readings were caused by emotional distress. That sucks.
I received my first delivery today. It came in a big heavy box even though I ordered only six meals. Inside the box was a lot of foam packing and two huge ice packs that were still mostly frozen. Seems kind of wasteful but not sure how else they are going to delivery perishable food.
Since it was my first order, I went small and ordered six meals. I also found a coupon so I think it was $45(?) for all six meals. The first one I tried was the Swede-ish Meatballs with peas/carrots and cauliflower-potato mash. This is the PR photo on the website:
This is what it looks like in real life after three minutes in the microwave oven:
I ate about 75% of the meal, both meatball (3/4) and vegetable-wise. Overall taste was probably a 6 out of 10. I used to get Marie Calendar frozen meals from supermarkets a lot and the taste is not that different except Freshly is much more expensive. I still have five more meals to try but will probably skip the coming week until I decide if I like the taste and the cost. I didn’t specify any nutritional restrictions so it’s not really heart/kidney healthy:
Nutritional Item
Swede-ish Meatballs
% DV
Serving Size
396 g
Calories
620
Total Fat
39 g
50 %
Saturated Fat
19 g
95 %
Trans Fat
1.5 g
Cholesterol
185 mg
62%
Sodium
950 mg
41 %
Total Carbohydrates
36 G
13 %
Dietary Fiber
8 g
29 %
Total Sugars
10 g
Protein
32 g
Vitamin D
0 %
Calcium
20 %
Iron
30 %
Potassium
60 %
Information from packaging
Since I only ate 3/4 of the meal and it was my only meal of the day, it wasn’t too bad overall. The worst items are probably the saturated fat and potassium. The ingredients did not show any food preservatives so not sure where all the extra potassium came from. The cream sauce appears to be made of Greek yogurt so the taste is a bit strange for me. Hopefully some of the other meals are healthier.
So (knock on wood) my heart rate is still pretty stable at 60 bpm after 36 hours. However, I haven’t been able to eat anything substantial. Yesterday, I coughed a bit too hard and threw up before eating anything for dinner. It was pretty violent and the regurgitated stomach acid burned my throat more. This morning, I thought I would make a ham/egg breakfast sandwich but that didn’t work out. The ham from Costco was very salty even though it tasted fine a few days ago. I ended up just putting a scrambled/fried egg in the sandwich but that made me vomit too. I think this time it was more of the bread scratching my sore throat. I’ve been afraid of eating anything all day. All I’ve had to eat for the past two days was one quarter of a terrible turkey sandwich, a small bowl of chicken noodle soup (that was basically all celery), and one bottle of Ensure. Only problem is that due to my dry/sore throat, I’ve been sipping water and swallowing ice chips both days so now I think I’m close to 3.0 kg over dialysis dry weight. I feel like I can’t even eat anything even if I can keep it down.
I feel like all the blog posts are complaints nowadays but life is really really not enjoyable at all.
I can’t get a break. The first night that my heartbeat has been “normal” in several weeks and my neuropathy pain starts acting up. I now have a stabbing pain in my left big toe that just started. I took two Tylenol but probably won’t help. I thought I would be able to get some sleep but with the sharp pain and super sore/dry throat from intubation, I think it will be another long sleepless night.
I just want to be symptom free for one night.
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Every time I have neuropathy pain, my mom would tell me her leg hurts and show me her swollen ankle. Every. Single. Time. I think she has arthritis joint issues so she rubs all sorts of ointments on it and it seems to help. That means each time I have excruciating pain in my feet, she want to rub her ointment on it. I’ve told her it doesn’t help but it seems to go in one ear and out the other. Last night, she rubbed some cannabis based ointment on my left toe and the pain was gone/minimized for about four hours but now it’s back with a vengeance. It’s hurting much more than before and I’ve rubbed ointment all over the area four times. Not helping.
It’s been about 12 hours since I woke up from surgery and heart rate has been pretty stable. Of courses, it was like this after the cardioversion and that eventually failed. Here is the Fitbit tracker data:
The big gap Sunday to Monday is when the tracker was charging. The big gap today was because I left the tracker at home during the hospital visit.
I’m here bright and early for my cardiac ablation procedure. It’s freezing in the lobby. Due to my insomnia, I didn’t sleep at all last night so I’m really tired right now. Maybe I can get some sleep while under general anesthesia.
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Just checked in. All the forms and brochures say St. Joseph Health. They had some issues with my insurance (again). Hopefully they were able to flip Medicare to primary. Now I’m waiting for the Cath Lab to open at 6:00 am.
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I’m in the Cath Lab pre-op area. I’m in my gown and I had my chest and groin shaved. Even though it was an electric razor, it felt dull. The also had some issues trying to get an IV in but got it on the third try.
Wow… clusterf*ck. Doctor didn’t know about my heparin allergy so he was about to call off the procedure. Then he decided to take a gamble and just do right side of heart since thorasic surgeon usually does left side during bypass surgery. Right side atrial flutter ablation doesn’t need heparin.
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I guess it worked. It’s about 9:30 am and I’m back in the pre-op/post-op room. Heartbeat is sinus at ~60 bpm and he didn’t shock me. Hopefully this lasts longer than 5 days.
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I guess they used some heavy duty anesthesia since they keep telling me not to sit up. My back is killing me. It’s almost noon now and a nurse brought me some lunch. It’s basically a turkey sandwich and chicken noodle soup.
Ugh. They gave me a “cardio” lunch and it tastes terrible. That and my throat hurts from the intubation tube during surgery. Nurse came by to rush me so she can removey sutures, which means going home soon.
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Huh. No sutures found. Nurse was a bit puzzled. Anyways, going home in an hour hopefully.
I used to eat at Pei Wei’s quite a bit because my boss really like their food, and there were locations close to work. I think a lot of Pei Wei locations closed in California and there are only three left in the state. Fortunately, there is one relatively close by in The District in Tustin. For lunch, I got their Mongolian Beef with white rice. I should have asked for light sauce because it’s super salty. Here is the nutritional information:
Hmm, salty. Total is about 2,500 mg of sodium. I only ate about half the food so I guess I can finish it for dinner. Since this is the only thing I’m eating today (probably), it’s not too bad compared to a DV of 2,000 mg. I wish they would also show the potassium and phosphorus content as well since those are the other two items I’m most worried about after sodium.
I ended up eating some noodles mom made for dinner and promptly threw up. Sigh…
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 Date
Creatinine (mg/dL)
eGFR
3/25/2015
1.84
43
4/29/2015
2.0
39
6/3/2015
2.7
27
7/6/2015
2.52
29
8/9/2015
3.42
20
8/14/2015
3.65
19
8/24/2015
2.74
26
10/19/2015
3.08
23
11/9/2015
3.13
22
1/11/2016
3.26
21
2/14/2016
3.32
21
5/17/2016
4.5
14
7/8/2016
4.72
14
8/18/2016
5.09
12
8/28/2016
5.04
13
9/29/2016
5.55
11
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.
I hope this bout of fatigue is related to my heart arrhythmia, and it gets fixed during Tuesday’s surgery. I still can’t sleep at night well and super tired all day. I got up to eat some breakfast around 10:00 am and was back in bed by 11:00 am. I kinda listened to our church’s sermon online but drifted in/out of sleep for the next six hours. Each time I sat up, it would take five minutes to shake the tiredness a bit but it would always come back. Now I need to try to eat something and my stomach is feeling weird again. I hope I don’t throw up (again).
I’m having these thoughts a lot more lately, especially sitting on my ass during dialysis. I’ve had multiple experiences where you have a bad dream, wonder how things can be so messed up, then wake up and everything is back to “normal”. Well, my reality has become the bad dream and there’s no waking up.
How did I get here? Here = dialysis 3x per week, heart arrhythmia, peripheral neuropathy, nausea, insomnia, and a host of other chronic medical issues. This is especially bad now since I have no way forward on a transplant, and no relief from this tedium due to the COVID-19 lockdown. Also, I’ve been stuck at home for five of the last six months. I’m worried that this will be the new normal for me and I’ll never get back to working and living a pre-pandemic life.
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.
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.
Thus nausea sucks. I’ve thrown up a few days in a row now. I basically just eat breakfast plus a tiny snack for lunch. During dinner time, I can’t hold down much food and would end up drinking a Nepro protein shake.
I just went downstairs to eat a small bowl of cereal at 2:30 am since my stomach was hurting from hunger. I think I have to order out more since I can tolerate a few restaurants’ food more than my mom’s home cooking.
Life with chronic diseases 