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.
Modern furniture and flooring
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.
Or should it be “flavour” since it’s Canadian. My sister travels to Toronto for work often, and sometimes I would ask her to bring back some Lay’s Ketchup Potato Chips. Ketchup chips are hard to find in Southern California. She though they were too salty (probably true) so she brought some Quaker Ketchup Rice Chips instead. The artificial ketchup flavor is pretty similar to the Lay’s chips.
Let’s look at the nutritional information for both:
Nutritional Item
Lay’s (50 g)
Lay’s (20 g)*
Quaker (20 g)
Calories
260
104
90
Fat
16 g
6.4 g
3 g
Saturated
1.5 g
0.6 g
0.3 g
Trans Fat
0 g
0 g
0 g
Cholestrol
0 mg
0 mg
0 mg
Sodium
430 mg
172 mg
190 mg
Carbohydrates
26 g
10.4 g
15 g
Fiber
1 g
0.4 g
1 g
Sugars
2 g
0.8 g
2 g
Protein
3 g
1.2 g
1 g
Vitamin A
0% DV
0% DV
0% DV
Vitamin C
15% DV
6% DV
0% DV
Calcium
2% DV
0.8% DV
0% DV
Iron
4% DV
1.6% DV
2% DV
*Lay’s (20 g) column = nutritional value for 50 g x 0.4
Comparing the 20 g serving columns, it the rice chips don’t seem healthier than the potato chips. There is less calories and fat but more sodium and carbs. There is no information on potassium and phosphorus but the rice chips are made from brown rice; both brown rice and potatoes have medium amounts of phosphorus.
I think I’ll ask my sister to bring the Lay’s potato chips in the future. Both types of chips are bad for you but the potato chips taste better.
I’m supposed to removed the bandage covering the incision in my arm right about now. There was a small dot of blood on the bandage yesterday and this morning, which seemed normal. I wore a long sleeve jacket today so I just looked at the bandage again and it’s soaked with blood. I think I’m supposed to leave it open but now I have to figure out how to cover it again. It also hurts a bit.
Yesterday (left) vs. Today (right)
I read the incision is only about an inch and a half so hopefully my 2″ x 3.75″ bandage can cover it without additional tape. I don’t have the large clear adhesive sheet they used to cover the gauze. I though I had a lot of bandages; if I need to replace them multiple times a day, I may run out soon.
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There is some surgical tape underneath the gauze and blood is oozing out the side of the tape. I held some gauze against the tape but blood is still seeping out slowly. I then taped some gauze against the incision; hopefully this will stop the bleeding soon so I can put a new bandage on it. It actually hurts quite a bit when I press on the surgical tape.
I didn’t do anything with my right arm this morning other then type and move the mouse on my computer. That should be well within the limitations in the discharge papers, which was “don’t lift anything over 5 lbs. for two weeks.”
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It’s now bleeding through the fresh gauze I put over the incision. I think typing is flexing the muscles in my forearm and making the bleeding worse. I’ll take a break from blogging for now.
It’s been two days since the recent surgery. I did fill my prescription for Tylenol-Codeine but haven’t taken any pills yet. The pain is not too bad and I’ve just been taking regular Tylenol.
The hospital discharge instructions also said to replace the dressing on the PD exit site daily with fresh bandage. There was quit a bit of blood/fluids on the original gauze, and I’ve had to replace the bandage four times already, though the fluid leakage is getting better. There are two more bandages that I’m supposed to remove today (48 hours after surgery). Not sure if I need to replace the bandages or leave them open.
Due to doing peritoneal dialysis at home for several months, I have a lot of medical supplies. I’m using up the rest of my Telfa island bandage. If I run out, I still have boxes of gauze and medical tape too.
While we’re fantasizingabouttravel, this seems to be the ultimate in fantasy travel. It’s only $160k per person, double-occupancy. You basically fly on a private Boeing 757 with only 50 seats, and all the attractions and accommodations are amazing.
$160k is a lot of money for 26 days. That comes out to ~$6k per day per person. Since the trip can take 48 guests, the total budget is $7.68 million. I could probably plan a great trip with that much money, though some things, like dinner at Kanazawa Castle may be hard to book for a nobody like me. I wonder how much profit margin they make on each trip.
Bombardier Challenger 850
There are also shorter trips on smaller private jets. It’s still not cheap; you’re looking at ~$35k for 14 days. This makes a lot of sense though. When I planned our Japan/Taiwan trip back in 2015, there was a lot of time allocated to traveling between destinations. It took us most of an entire day to get from Osaka to Taipei on Japan Airlines, and many hours to get from Tokyo Station to Shin-Osaka via the Tokaido Shinkasen. If we had chartered a private jet, then it would have been only a few hours.
This looks like an interesting itinerary. Five countries and only 5.5 hours of flight time between the different cities. You would spend four out of the 14 days transiting on a normal trip. I took a Trafalgar tour many years ago from London to Paris to Rome and we spent almost two days traveling between the cities by ferry and overnight train.
Of course none of this is possible without a kidney transplant. I don’t see a Dialysis in the Air option, though they probably could set up a hemodialysis machine inside a wide-body jet. The patient would have to do dialysis on the jet, probably while parked at an airport, but it will cost a lot for a dedicated nurse and space on the plane for the dialysis machine. Maybe it’s more feasible for peritoneal dialysis patients since all you need is someone to coordinate moving cyclers and supplies to hotel rooms from the private jet. It will be up to the patient to run their nightly dialysis program.
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OK, they are ridiculously expensive. I looked at one of their Tailor Made custom tours of Nice and Monaco. For four days, it’s ~$5k double occupancy, so about ~$10k for two people. The hotel listed in the itinerary, Hôtel La Pérouse, is only $210/night in May for an Economy room; even if you book a Deluxe room, it’s ~$750/night, breakfast included. If you go to all the places listed in the trip itinerary, the total cost of admissions is <€60. Other than the hotel breakfasts, there are no other meals included. Add local transportation, airport transfers, and the cost for a private guide for a few days, it’s still way less than $10k. I guess there’s some value in coming up with the itinerary. A friend planned her Europe trip by copying itineraries from Rick Steve’s website, or you can just use a travel agent.
One of my good friends is a doctor and he runs the family medicine clinic at a major public hospital. He’s not my doctor so I try to avoid asking him about medical issues but sometimes it’s convenient to ask a quick question to someone you trust. I did ask him about the keloid growth on my heart bypass surgery scar and he texted this product to me.
I found it on Amazon for about $20 for a 5″ x 6″ sheet. You’re supposed to cut it to size and stick on your scar for about four months. Twice a day you need to remove it and wash it with soap and water. There are lots of similar products but we’ll try this one first.
I think this is the brand that my acupuncturist uses. I can’t figure out how much they cost. It seems to be $17 for 1,000 needles which would be 1.7 cents each. However, Amazon is selling a different brand of needles for $17.44 for 100 needles which is 10x the price. Anyway, it’s either 2 cents or 17 cents per needle. My acupuncturist uses 21 needles each time for my appointments.
I found a few more research papers, including some that included randomized control trials (RCT). Usually they find that acupuncture provides marginal improvements in whatever measurement of neuropathy they chose though it always ends with the need for more research. Other papers are a survey of existing research and most draw the same conclusion.
I saw a study that lasted 8-weeks, another for 10-weeks with treatments either once or twice a week, and one for 15-days. So far, I’ve only had six treatments for my neuropathy. My acupuncturist wants to discuss progress and remaining treatment plan in two weeks, which will be about nine sessions completed. Maybe acupuncture treatment has diminishing returns so you have to stop and call it done at some point.
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.
$197!
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.
This is something that has bothered me for several years. Occasionally when I eat, I would start sweating, mostly near the top of my head. This only happens sometimes, seemingly with certain foods but I haven’t been able to figure it out. I’ve asked my primary doctor and dialysis nutritionist and neither have a definitive answer.
If you search Google, typically it comes back with gustatory sweating. However, I don’t sweat all the time and definitely not when I think about food. Some website do say that sweating when eating could be related to diabetes so maybe I have a mild form of this secondary hyperhidrosis. It’s a bit bothersome but not enough to keep me at home and away from eating out. Usually wiping with one or two napkins is enough to remove the moisture.
Found some research articles. The sweating seems to be a rare complication of diabetes. Of course I would have it.
About a month ago, I tried calling the EDD to clarify a letter they sent me. After many many tries, I gave up and wrote a letter on January 7th. Well, yesterday during my surgery, they finally called back, twice, and left a voicemail. They also sent me an email basically telling me that my claim was approved. This is after sending me several checks in the mail already.
Seriously, I’m not sure how things get done in the California government. Again, if private companies worked with the same speed and efficiency as government, we’d all be unemployed.
I just realized I have to call/write/email the EDD again. My cardiologist put February 14th as my return to work day. I don’t know if the EDD will pay me until that date. However, my actual “return-to-work” date was January 30th. I’m taking vacation days for January 31st onward and you can’t be paid while getting disability from the EDD.
Done. The surgery only took about an hour and a half. I think I went into the OR at 9:40 am and woke up by 11:45 am. We were late going into the OR because the surgeon decided last minute to put the fistula into my right arm. He said my veins were kinda small in my left arm and he couldn’t be sure that the fistula would work. The right arm had much better veins.
Dammit.
It seems that once the needles go into the fistula, you can’t really move your arm that much. With my right arm immobilized, I’m not going to be able to do much during dialysis. It already sucks having to sit for four hours, but at least I could do stuff. Now it’s going to be much harder to sit and do nothing.
The peritoneal dialysis catheter is out too. I’m supposed to change the dressing after 24 hours. Now I have to slowly get rid of all my remaining PD supplies: solutions, tubing, cleaning solution, etc. I also have to figure out how to put my temporary crowns back in before trying to eat.
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Another issue, hopefully temporary, with having the fistula on the right arm is side sleeping. It still hurts for me to sleep on my left side, and now I can’t sleep on the right side so I’m stuck sleeping on my back. That’s tolerable with my adjustable bed but on normal flat mattresses, my back and chest still hurts when lying down.
I’m not sure what I could have done. Ask the surgeon to force the fistula into my left arm? Telling him to forget the fistula and use the chest catheter a bit longer? Sigh…
I’m at the hospital and just checked in for my surgery. During check-in, they asked about medical insurance. I told them that I was just approved for Medicare but have not received the insurance card yet. Luckily, I saved a copy of my benefit letter on Google Drive and was able to get my Medicare number. She keyed in the data into their computer and I guess it was verified as active. We’ll let their billing office figure out how to coordinate the two different insurances.
After years of paying Medicare taxes, I finally get to use it.
Less than 11 hours until surgery tomorrow. Even though these two surgeries are fairly minor, I’m more anxious than I was before my heart bypass surgery. I guess those happened quickly so I didn’t have time to dwell, while I’ve had weeks to think about getting a fistula.
During the pre-surgery call last week, the hospital went through all my medications and gave instructions for each one. Some I can take but others I need to skip. I stopped taking Aspirin and Eliquis about a week ago. I was supposed to stop taking vitamins too but I forgot and only stopped tonight. Finally, I’m supposed to skip one of the blood pressure medicines but not the other ones, and skip the blood sugar medication.
They also told me to shower using anti-bacterial soap. Since I can’t take showers with the chest catheter, I’m going to try and clean up a bit with soap and a towel. Don’t want to stink up the OR tomorrow.
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I only slept for 2.5 hours. It’s now 5:15 am and I’ve been up for over three hours. I tried going back to sleep but I’m anxious about the upcoming surgery. I still need to get up in an hour to wash up.
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I give up. Between surgery anxiety and the numbness in my feet, there’s no way I’m getting any more sleep this morning. Also my chest is starting to hurt when I lay flat on my back. I’m going to be under general anesthesia for the surgeries but it’s gonna suck when I wake up with a couple incisions and a sore chest.
There is no response to my email to the vascular surgeon’s office.
I just came home from my dentist’s house. He helped me remove the temporary crowns he put in on Tuesday. The top one was in there pretty tightly so I probably would not be able to get it out with my fingers. My dentist said after surgery, I can try to put them back in myself. They’re pretty tight and should hold without dental cement.
It was a bit awkward sitting in his guest bathroom holding a flashlight so he could see into my mouth. I also said hi to his kids; I wonder what they’re thinking about the weird late night visitor.
Today’s appointment was really long. I think she reset the timer three times so I was lying there for almost 45 minutes. Once again, I think I felt more numbness but also what feels like pressure on my big right toe. I also noticed, or think I noticed, more feeling at the bottom of my left foot though the numbness seems more intense. This time, I also felt a bit of pain at the top of my left foot when I move it. I thought I may have hurt it walking but the pain went away when she took out the needles. Since I can’t feel the needles going into my feet, I counted them as she is removing them. There were 16 needles inserted into both legs/feet.
On the way out, we made appointments for the next two weeks. I am taking next Tuesday off in case I can’t drive yet from tomorrow’s surgery. The acupuncturist said let’s reevaluate my progress after two weeks to see if we need to schedule more sessions. That seems overly optimistic; I still can’t decide if there is any tangible difference in my neuropathy from acupuncture or if it’s all imagined.
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I just tried taking a nap and could not fall asleep. The tingling sensation in my feet is very hard to ignore even though I’m dead tired. I hope I didn’t mess myself up with acupuncture and made my neuropathy worse. I have small group for church tonight, then a trip to my dentist’s house to remove the temporary crowns. Probably won’t get home until 11:00 pm and I’ll need to clean up (wash) for surgery tomorrow.
If it seems I’m whining and complaining in every post, it’s the main reason I started this blog: to vent anonymously about my terrible life. Well, I went back and read some of my posts from earlier and things have gotten better, relatively. A sampling:
Why? (11/18/2019): Staying in the hospital is lonely and really bad for your mental health. The heart surgery and switch back to hemodialysis happened so fast that before I knew it, I had a huge scar in my chest, and plus another catheter. I just said yes to everyone and everything. In hindsight, I didn’t have much of a choice but not having time to process until afterwards was tough.
Pain, Part II (11/20/2019): This was when I was still in the hospital, a day before discharge. I couldn’t sleep on my back the night before due to chest pains so I ended sleeping while sitting upright. Terrible.
Low BP (12/4/2019): Ha! Low blood pressure. How quaint. After weeks of 200/120 readings, the time when my blood pressure was low seems so long ago. I also had major edema in my legs from the extra saline they pumped in me to keep my blood pressure from dropping too low post-surgery.
Struggling (12/13/2019): This seems like a general complaint post. I probably just started climbing stairs and sleeping in my bed instead of in the family room recliner. This was before I bought the adjustable bed so getting in and out of bed was a challenge, as well as finding a good position for sleep.
Fluid Restrictions (12/13/2019): Early during my return to hemodialysis, I knew it would be harder than previously. I got used to drinking whatever while on peritoneal dialysis since I could pull a lot more water out each night. With basically zero urine output this time, fluid restrictions would be very important. I thought I was going to die of thirst if I can only have < one liter of fluid each day. Fortunately, it’s been mostly okay. Initially I was cheating by using leftover PD solution to get some extra UF, but I haven’t done that in weeks and I am able to keep my weight gain to < two kg between dialysis sessions. For example, I only gained 0.7 kg vs. Tuesday even though I ate an entire Boiling Point hot pot yesterday.
Another ER Visit (12/14/2019): Ugh. I think this was a bad panic attack I had during dialysis and I ended up in the ER. I remember being in despair thinking about the months or years of dialysis ahead of me. It’s six weeks later and I still hate dialysis but no more panic attacks.
Another Week (12/21/2019): I think that week I was only getting about an hour or two of sleep each night. I may also have had my panic attack when I had to get out of the house, though it was 11:00 pm and raining outside.
Most things are definitely better than those first few weeks after surgery. I can eat most of the time, sleep is marginally better, and I’m mobile, both walking and driving. Going back to work will add a bit more feeling of normality. It’s hard to see the improvements daily since it’s so incremental, but writing down events and feelings here allows me to go back and reflect and appreciate the difference.
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Crap! The patient next to me has become unresponsive. His blood pressure has been really low all session. There are now four nurses and a few techs working on him.
Okay, he just woke up. I think the nurses are very relived. The tech thought they may need to call 911 and nobody wants that.
My neuropathy is definitely… different. Once again, the numbness feels more intense, but it seems I have more feeling in the soles of my feet. I’m not sure what is causing this since there are so many variables. it could be acupuncture, or the Amiodarone from 7 weeks ago finally wearing off, or just general recovery/weirdness post heart surgery.
I don’t know if I like it better. I think it’s bothering more than before. I have my legs up on the dialysis chair but I want to sit normal since that seems to be better for the numbness. However, that will likely drop my blood pressure and it’s pretty low already. Arg, so many things to think about.
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I fell asleep for a bit while typing this post. The machine took another blood pressure reading and it was 134/71. My feet are still numb however so I think I’ll sit upright for awhile to see if it helps.
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Ugh, I just sneezed and my chest hurt real bad. Sitting with my legs raised also puts pressure on my chest. Sitting in a dialysis chair for three and a half hours three hours and 45 minutes is harder when your chest scar is acting up.
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 gettingdialyzed out by the machine.
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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.
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Time
Systolic
Diastolic
Pulse
Notes
8:45 am
90
60
—
Standing
8:46 am
102
—
—
Standing
8:53 am
120
69
59
Sitting/legs up
9:23 am
110
64
63
Sitting/legs up
9:58 am
134
71
59
Sitting/legs up
10:28 am
139
82
59
Sitting/legs down
10:58 am
139
82
60
Sitting/legs down
11:28 am
145
87
59
Sitting/legs down
11:58 am
158
95
60
Sitting/legs down
12:28 pm
163
93
58
Sitting/legs up
12:58 pm
178
—
—
Sitting/legs up
1:03 pm
138
—
—
Standing
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.
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.
This is the last week before my planned return to work. I have never stopped working for so long since I started working full-time. I’m actually anxious because it feels like I’m starting a new job, plus I have two surgeries on Friday. This is my schedule for the last seven days of medical leave:
Date
Events
Thursday, January 30th
dialysis; acupuncture; church small group; go to dentist’s house to remove temporary crowns for surgery
At some point, I have to restart cardiac rehab as well but that will depend on what the surgeon says. I can probably walk and work out my right arm pretty soon but I don’t know how long I have to rest my left arm.
Again, I’m basing my non-exercise recovery schedule according to the PD installation surgery. That was on a Thursday, also with general anesthesia. I took Friday off work, and returned the following Monday. The catheter removal should be similar to the earlier surgery, and the fistula surgery seems to be a more minor surgery. I guess I’ll find out in 36 hours.
Life with chronic diseases 