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.
Everything is so complicated when you have multiple health issues. My dentist put in some temporary crowns yesterday while permanent ones are being fabricated. I mentioned to him that I will be having surgery this Friday under general anesthesia. Usually the anesthesiologist doesn’t want anything loose in your mouth since it can be knocked off and become a chocking hazard. My dentist wanted me to check if anyone on the surgical team can remove them prior to surgery, or I can remove them myself with a hemostat. Sensing my hesitation about DIY dental work, he offered to take them out the night before if the surgical team won’t do it. I think it’s unlikely that the surgical team wants to be responsible for my temporary crowns. I sent an email to the vascular surgeon’s office to ask but I think I may have to make a late night visit to my dentist’s house after small group tomorrow.
Ugh, I’m so unmotivated. After weeks of having daily doctor’s appointments, I have nothing scheduled today. I was planning to go to cardiac rehab this morning at 7:30 am, but I ignored the 6:30 am alarm. It’s almost 10:00 am now and I’m still sitting at home blogging. I really wanted a day of doing nothing before my “minor” surgery on Friday, but I fear I’ll never complete the rehab program if I don’t go daily and complete is as soon as possible.
Alright, I’ll go after lunch. They’re open from 1:00 pm to 4:00 pm and it’s less busy in the afternoon anyway. I just hope my blood pressure will be low enough with just the 10 mg of NIFEdipine, since the other two meds I took in the morning will probably wear off by then.
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It’s ~2:00 pm and I’m still at home. I think I’m not going to make it today. I just measured my blood pressure sitting and it’s 192/100. I took 10 mg of NIFEdipine but not sure if that will work by itself if the other two meds have worn off. I don’t want to go to rehab and sit waiting for my blood pressure to drop.
When I return to work, I’ll have to get to rehab at 7:30 am in order to finish by 9:00 am, which will get me to work before 10:00 am.
I tried going to sleep even earlier Monday night and was able to sleep from 9:53 pm to 1:08 am. It’s now 2:23 am and I’ve been blogging for an hour. I was really tired yesterday with only an hour+ of sleep so I’m going to try and fall asleep again.
I mentioned this renewed lack of sleep hours to my therapist last night and now she really wants me to meet with a psychologist for possible medication. Ugh, I really don’t want more medication, though I’ve heard some of these anti-depressive drugs are amazing and addictive.
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I was able to sleep from ~4:00 am to ~6:30 am before getting up for dialysis. However, that doesn’t add up to 7 hours. I looked at the sleep log and again, Fitbit though I was sleeping when I was actually at a dentist appointment. I thought I was squirming a lot in the dentist chair since it was a very painful experience but the tracker thought I was sleeping from 3:00 pm to 4:00pm. The actual dentist appointment was close to three hours. I guess I need to go in and delete that entry.
I just noticed that a Comprehensive Metabolic Panel was done on blood samples from 1/16/2020 and 1/24/2020. I don’t know how much results should vary from week to week but here’s a comparison of a few tests:
Test
Normal Range
1/16/2020
1/24/2020
Albumin
3.6 – 5.1
4.3 g/dL
3.9 g/dL
Calcium
8.6 – 10.3
8.7 mg/dL
8.9 mg/dL
Potassium
3.5 – 5.3
4.8 mmol/L
5.9 mmol/L
Urea Nitrogen (BUN)
7 – 25
33 mg/dL
29 mg/dL
Glucose
65 – 99
172 mg/dL
100 mg/dL
Creatinine
0.7 – 1.3
9.71 mg/dL
7.91 mg/dL
eGFR (non Afr-American)
> 60
6
7
Even though both test results were called Comprehensive Metabolic Panel, some of the items tested were different. I’ve left out a bunch of stuff that were within normal range on both days. Parathyroid Hormone and Hemoglobin A1C results from 1/16/2020 were separate tests outside of the CMP tests. The one result my cardiologist was concerned about was the high potassium number, which was normal a week ago. I wasn’t fasting on either of the test days so not sure if that matters. On 1/24/2020 I had a piece of bread plus a cup of almond milk for breakfast, and there was no food log from 1/16/2020. Another difference was the sample from 1/24/2020 were taken right after cardiac rehab, and exercise may increase potassium levels in some people by 0.9 mmol/L.
The glucose number was high on 1/16/2020, but typically my results are much lower while fasting. Most sources have 70 – 130 as normal for diabetic patients while fasting. Finally, the creatinine and eGFR numbers are way off since the normal ranges shown are for non-ESRD people. Interestingly, the sample from 1/16/2020 were taken prior to dialysis on a Thursday, and the 1/24/2020 results were taken on a Friday, basically a day after dialysis. Looks like dialysis does clear some creatinine but poorly compared to a regular kidney.
Hmm, not good. Another week with decreasing activity (steps). Maybe I’m relying too much on the 30 minute cardio portion of rehab and not going out walking enough.
I feel bad writing this since everyone at the rehab center is very nice but the program is an insurance scam. I’ll pass final judgement when I find out how much they are charging my insurance for each session. Here’s what I do for each session:
Sign in at the door and pay my insurance co-pay ($25)
Measure blood sugar
Attach a wireless EKG transmitter so they can monitor my heart
Measure blood pressure
Cardio exercises for 30 minutes, typically walking on a treadmill
Measure blood pressure again
4 minute exercise on a hand pedal machine
15 reps of three exercise for each arm on rope machine
15 reps of five exercises using free weights
Measure blood pressure
Measure blood sugar
That’s it. All they really do is measure my blood pressure three times and watch my heartbeat. Usually there are two nurses and an assistant watching 10-12 people. It’s like a gym except I’m paying by the hour instead of monthly. I would probably stop going and do the exercises at home if UCLA didn’t require me to finish the program to put me back on the active transplant list.
Cardiac Rehabilitation Center at Hoag Hospital in Irvine. The St. Joseph one in Orange is not as big or nice.
5 down, 19 sessions to go. If I take a week off after my surgery this Friday, then I can finish the program by March 10th. That assumes I go four days a week, including after dialysis on Tuesdays. If I only go three days a week, then I won’t be done until the end of March. UCLA expects me to be done mid to late-March so I can’t slack.
Since I only got a little over an hour of sleep this morning, I’m going to try and take a short nap. I didn’t exert myself too much during rehab and it’s supposed to get a lot warmer outside so I’m going to try and take a walk in the park later this afternoon.
Looking over the Cardiac Rehab goals, I am slightly over on the cholesterol numbers. However, I only had results from over three years ago and since I’ve lost a lot of weight, the numbers should have improved. I just received results from a lipid panel taken last Friday.
Test
Normal Range
Results
HDL Cholestrol
> 40 mg/dL
55 mg/dL
Total Cholestrol
< 200 mg/dL
99 mg/dL
Non-HDL Cholestrol
< 130 mg/dL
44 mg/dL
Cholesterol/HDLC Ratio
< 5.0
1.8
LDL Cholestrol
< 70 mg/dL*
28 mg/dL
Triglycerides
> 150 mg/dL
81 mg/dL
*< 70 mg/dL for diabetic patients; < 100 mg/dL for everyone else
This is the first time in a long time that every category in a lab test came back within normal range. However, I’ve been on the maximum daily dosage of Rosuvastatin (Crestor) for a long time. Maybe I can get someone to cut that to 20 mg.
They also did a comprehensive metabolic panel and a lot of those numbers were out-of-range. My creatinine was 7.91 mg/dL which corresponds to a eGFR of 8. I can’t find normal ranges for patients on dialysis but I feel those number should be better. I though my nephrologist said dialysis give you about 15% kidney function. My potassium numbers are also high at 5.9 mmol/L; it was only 4.8 mmol/L about two weeks ago.
These test were primarily ordered by my cardiologist. I’m not sure what they were looking for but their office called me to let me know my lipid panel results were excellent.
I tried to access Fitbit through my PC and got back an error page.
That looks pretty serious. Usually when a server is down for routine maintenance, there is a message giving you the times that the server is down. I hope they didn’t get hacked like so many websites. I don’t know if any of my health data is backed up locally.
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The site is back up now. Hopefully it was just a random error and they weren’t hacked.
Ugh, the 2 am curse strikes again. After flushing out the PD catheter, I finally fell asleep at 1:08 am but woke up at 2:29 am. That’s only about an hour and 15 minutes of sleep. It’s 4:45 am now and I’ve been lying in bed trying to sleep again for over two hours.
I did notice that the numbness in my feet is pretty intense, but not in my hands. Usually the numbness feeling in both are correlated. Also, even though there seems to be more numbness, I can feel the carpet more distinctly under my feet. I’m not sure what’s going on since it’s hard to objectively measure the neuropathy. It’s like some of the numbness is wearing off and underneath there is… a different kind of numbness. Maybe the underlying diabetic peripheral neuropathy is worse than before, and it was masked by a side effect of Amiodarone.
It also could be that I’m feeling some of the effect of acupuncture. My acupuncturist did day that she was supposed to cause micro-trauma that my body will repair, which should increase circulation to the affected area. If that’s true, I hope that the numbness will improve soon instead of only getting more intense.
Or maybe nothing is happening, and the numbness at any given time just feels worse than past memory. That would suck.
Now I’m seriously thinking of traveling during the two-day dialysis gap between Saturday and Tuesday. The only trip I’ve taken outside of LA during the past three years is to Del Mar Racetrack so getting on an airplane will be a big deal. I think the first trip will be somewhere close like San Francisco or Las Vegas instead of Toronto.
I checked our flights to San Francisco from both SNA and LAX. Even though LAX flights are cheaper, I’ll save lots of time and stress flying out of SNA. This itinerary looks good:
Flight
Date
From
Departure
To
Arrival
Alaska 3453
Feb 22
SNA
3:00 pm
SFO
4:35 pm
Alaska 3320
Feb 24
SFO
8:30 pm
SNA
10:06 pm
Interestingly, neither flight is operating by Alaska Airlines but by rather SkyWest Airlines. Both flights are on an Embraer 175 which only seats 76 passengers. One-way first class seats are only $139 compared to >$400 from LAX on a larger jet.
From there, it’s a 25 minute BART ride to Union Square area for ~$10. There are many 4-star hotels for ~$150/night and Chinatown is within walking distance. I think I’m going to plan this out for a weekend in February or March, once I’ve recovered from my PD catheter/fistula surgery. I only need to take one day off work. Maybe I’ll bring my mom since she doesn’t get out much.
I also checked out traveling by Amtrak to San Francisco. The Coast Starlight runs from LA Union Station to Oakland, and a bus will take you to several final destinations in San Francisco. The only problem is the train departs Union Station daily at 10:10 am. Even if I switch my dialysis time to first shift, it will be hard to get to downtown LA by 10:10 am. Also it takes 12+ hours to get to San Francisco by train/bus, and business class seats are $84. Compared to flying first class from SNA for $139, the train is too slow and too expensive.
Now I’m obsessed with travel for some reason. Since a cruise in the South Pacific is doable, surely I can fly to Toronto and see some relatives over the weekend. I checked Google Flights and found this itinerary:
Flight
Date
From
Departure
To
Arrival
UA 2052
Feb 1
SNA
1:00 pm
DEN
4:21 pm
UA 2026
Feb 1
DEN
5:45 pm
YYZ
10:52 pm
UA 582
Feb 3
YYZ
5:41 pm
ORD
6:34 pm
UA 1290
Feb 3
ORD
7:53 pm
SNA
10:29 pm
I would have to ask my dialysis clinic to move my Saturday session to first shift which is from 5:30 am to 9:00 am; currently I’m scheduled for second shift, which gets out at 1:00 pm. Assume I get out by 10:00 am, that gives me three hours to go home, pack, and drive to John Wayne Airport for the 1:00 pm flight. Arrival in Toronto at 10:52 pm shouldn’t be a problem; there a lots of hotels right by the airport for <$100/night. This itinerary gives me a day and a half in Toronto, and still gets me home by Monday night. Airfare is $498. Both flights are connecting flights but there are no direct flights from John Wayne to Pearson International.
I used to live here a long time ago
One issue is that I will be flying United Airlines, the worst airline in America but they have the shortest overall flight time from SNA to YYZ. For a bit less money ($433) and more travel time, I can fly Delta Airlines:
Flight
Date
From
Departure
To
Arrival
DL 689
Feb 1
SNA
1:50 pm
ATL
8:56 pm
DL 1976
Feb 1
ATL
9:45 pm
YYZ
12:01 am (+1)
DL 2320
Feb 3
YYZ
3:45 pm
ATL
6:07 pm
DL 895
Feb 3
ATL
7:50 pm
SNA
9:50 pm
I heard Delta is pretty good for a domestic airline. I’ve never flown Delta before; typically I’m on Alaska or American Airlines because I used to have Oneworld status through Cathay Pacific.
Symptoms of my phantosmia have largely disappeared. They do occasionally appear suddenly however. Everything would smell normal then I would smell cigarette smoke where there shouldn’t be any, like at a non-smoker’s house. This happened to me Thursday night. I can’t remember the last time I had symptoms but after dinner at a friend’s house, suddenly I was flooded with the smell of cigarette smoke. Again, I think it’s sinus related. During dinner, I was hot and sweating a bit so I took off my jacket. Then it became too cold and I was getting a few chills. I noticed when the temperature is cold outside and I go walking, it would sometimes make the phantosmia symptoms appear. The symptoms are rare enough now that I think it’s safe to assume I’m not getting a brain tumor.
Post #300! Instead of walking, I’ve been spending all my time blogging. Just kidding.
It’s been a busy week. From getting two root canals done Monday to attending three cardiac rehab sessions, I haven’t had time to go walking. I though about going this afternoon after dialysis but I had to run an errand at Home Depot, then pick up some medication at the pharmacy. In addition, I felt exhausted after dialysis. I got more than five hours of sleep last night/this morning. It’s not a lot but about average for this week. Maybe the rehab exercises are more tiring than they appear.
It’s about 4:00 pm now. I think I’m going to try and nap before dinner to bring up today’s sleep hours.
For some reason, I can’t get Dialysis at Sea out of my mind. Initially I thought it was crazy to go on a cruise while on dialysis, but there is really no way to travel internationally otherwise. I’m going to plan out one of the more exotic trips to see if it will actually work for me, ignoring the fact I need to go back to work. There is a cruise on Celebrity Solstice from Auckland to Sydney departing on March 10, 2020.
Since Auckland is super far and 21 hours ahead, I would have to leave on March 8th to make it there by March 10th. The cheapest flight option is AA 83, which may be a Quantas flight, on a Boeing 787. It departs at 11:05 pm from LAX and arrives at 8:40 am two days later. The ship departs Auckland at 6:00 pm so plenty of time to get from the airport to the ship terminal. Since I had dialysis on Saturday, March 7th, if I can get a session onboard either Tuesday night or Wednesday morning, it should be fine. The cruise is 10-days long which means 4-5 dialysis sessions onboard.
Central Auckland
The cruise arrives Sydney at 6:30 am on March 20th. AA 72 departs at 11:15 am and arrives in LAX at 7:05 am the same day due to the time difference. Total airfare in economy is only $916. Upgrading to premium economy will cost $2,928 total. Pretty expensive but may be worth it since the flights (direct) are so long.
Dialysis at Sea has the starting price for the cruise at $1,824 while Celebrity has $899. Assuming the dialysis premium is ~$1,000 and remains constant instead of scaling with Celebrity’s prices, to get a room with a balcony/veranda for either one or two people will cost ~$3,500 or ~$4,500 through Dialysis at Sea. So for two people flying premium economy and staying in a balcony room onboard, it will cost ~$11,000 total including tip and drinks. Very expensive but totally doable.
Ugh! It’s 3:07 am and I’m not tired. I was finally able to fall asleep around 11:30 pm last night but woke up at 2:21 am. Three hours is better than zero but I need more if I’m going to return to work.
For the past few weeks, it kind of feels like I have a full-time job even though I’m out on short-term medical leave. Since I started driving again, it’s been one medical related appointment after another. Here’s a list of regular appointments for the next few months:
Hemodialysis: three times a week for about 4 hours
Cardiac Rehabilitation: four time a week for 1 – 1.5 hours
Acupuncture: twice a week for about 45 minutes
Therapist: once a week for about an hour
If you add that all up, it comes to about 20 hours per week. Then add to that a bunch of one-off appointments like at the endodontist, dentist, vascular surgeon, etc. Starting February, if I go on 3/4 time at work, I need to add in 30+ hours of work plus 8 – 9 hours of commuting per week.
For sure I need to sleep more. Can’t be waking up at 3:00 am each night for 2 – 3 hours if I’m working the next day.
Life with chronic diseases 