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.
I got a letter from Social Security Administration in the mail today. It’s a Notice of Award that I am entitled to Medicare because of my kidney condition. It’s a more detailed version of what I saw online yesterday.
The letter also said that I could start my Medicare Part B benefits on December 2018 as well, but I would have to pay $1,760 in premiums within 60 days. I’m still very confused about this. Last year, I had to pay my out-of-pocket limit of $3,400 since I only have my work insurance. Does Medicare cover that amount? If so, then I can pay $1,760 to get reimbursed $3,400? I think the premium will be more than $1,760 because of my salary so it’s likely not worth it.
Letter also mentions that I should get my Medicare card within two weeks. I can’t wait.
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.
The medications continue to work. I took all three at around 8:15 am this morning before dialysis. Here are the first several readings:
Time
Systolic
Diastolic
Pulse
Notes
9:02 am
117
74
64
Standing
9:13 am
135
75
63
Sitting/legs up
9:43 am
141
79
60
Sitting/legs up
10:13 am
151
83
60
Sitting/legs up
10:43 am
145
86
60
Sitting/legs down
I only have two data points since I started taking all three medications before dialysis, but if you look at the numbers from last session, my blood pressure increased at the 10:18 am reading. Likewise, there seems to be an increase today at 10:13 am. One or more medication is getting dialyzed out about an hour into dialysis. My guess is the Metoprolol. There was a study done on Olmesartan and it appears resistant to dialysis.
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Blood pressure increased to 168/96 at 11:43 am. Either something else is getting dialyzed out or the 10 mg of NIFEdipine is wearing off since it’s such a low dose.
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Remaining readings continued from table above:
Time
Systolic
Diastolic
Pulse
Notes
11:13 am
148
90
60
Sitting/legs down
11:43 am
168
96
62
Sitting/legs down
12:13 pm
156
88
60
Lying down
12:43 pm
157
89
62
Lying down
12:50 pm
159
92
62
Sitting/legs down
12:52 pm
127
74
65
Standing
I’m surprised that both number dropped so much on the final standing measurement. The initial increase at the beginning of dialysis when I sat down wasn’t that large. That means I still have orthostatic hypotension.
Today is day 48 since I stopped taking Amiodarone. The numbness in my hands and feet is still there and continues to bother me during dialysis and sleep. I read online that the averaeg half-life of Amiodarone is 58 days, with a range from 15 to 142 days. Hopefully I’m average in this case, and there will be some reduction in the neuropathy in ~10 days.
Unfortunately, the article also says:
Chronic administration of Amiodarone hydrochloride tablets may lead to peripheral neuropathy, which may not resolve when Amiodarone hydrochloride tablets is discontinued.
If that’s the case, then my experiment with acupuncture better work or I’ll need more medication for the neuropathy.
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.
I have not received my Medicare card in the mail yet but there are some updates on the my Social Security website. There is a new section called Benefit & Payments Detail and it lists more info about my benefits.
I guess the most interesting part of the page is the Medicare Part B premiums. It still says $144.60/month which is the base premium. From their own website, I think I have to pay a lot more based on my salary. I have not received an invoice so far so I don’t know my premium yet. On the benefit verification letter, they’ve added my Medicare ID number, which I can use to get services before my card arrives. I’m still not sure what Part A and Part B covers other than ESRD related costs.
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.
So after being dormant for about 10 weeks, there is something happening to my heart bypass surgery chest scar. Before, there was just a faint pink line running down my chest. If you look closely, there is a slight channel where the cut was. It seems like during the past few days, there is now flesh growing along the scar so the pink line is slightly raised.
I think the term for this is keloid. From Wikipedia:
Keloid, also known as keloid disorder and keloidal scar, is the formation of a type of scar which, depending on its maturity, is composed mainly of either type III (early) or type I (late) collagen. It is a result of an overgrowth of granulation tissue (collagen type 3) at the site of a healed skin injury which is then slowly replaced by collagen type 1. Keloids are firm, rubbery lesions or shiny, fibrous nodules, and can vary from pink to the color of the person’s skin or red to dark brown in color.
Although my keloid looks nothing like the photo in Wikipedia, I think I’m starting to experience some pain along the site. Previously, the pain has been deeper in the chest cavity. Now there is some pain on the surface and seemingly along the scar. My cousin, who had her surgery two years ago, said that she still feels some pain, and the skin around the scar sometimes feel numb. Two years! That’s some crazy long recovery time. That’s why I think going back to work in a couple of weeks is fine. Recovery improvements from here on out will be very slow so waiting a few more weeks won’t make a difference.
I bought an Omron wrist blood pressure monitor several years ago. It connects to my phone so I created an account with one email address. Recently, I purchased an AliveCor KardiaMobile 6L and registered it with another email address. I guess in 2018 the two companies combined or something so the new Omron app can now connect to the KardiaMobile and get EKG’s. I’m debating whether or not to start recording EKG’s on the first account since it would be nice to have one less app on my phone. I would lose a few EKG’s and probably the free month of premium account but its features are pretty much useless.
After getting over eight hours of sleep on January 12th, hours slept each night has been highly variable but generally trending down again.
I’m not really sure why sleep has been so elusive. I’ve been going to bed earlier, around 10:00 – 11:00 pm, but would still wake up around 2:30 am then have difficulty falling back asleep. Since the surgery, I’ve tried the following:
Changed mattress
Purchased a new mattress and bed with adjustable base
Removed heating blanket
Lowered output on space heater in bedroom
Changed cover back to original queen sized comforter
I’m still not getting the temperature right since I woke up all sweaty again last night. Also, the duvet/comforter I was using since surgery is too light in weight. I think I need my heavier comforter that has some weight to it. I sleep better with cooler room temperature but with a heavier blanket to offset the cold.
My mom just got home from the hospital after spending the night. She went in for surgery yesterday. We thought she was getting a carotid stent for a blocked artery. It turned out it was a carotid endarterectomy instead.
The procedure is similar to my heart bypass surgery that it removes plaque from arteries, just in a different location. Now I’m worried that I have more blocked arteries in other locations since the heart bypass surgery only cleaned up arteries in the heart.
Most of my issues are from lifestyle choice in food and exercise (or lack thereof). However, likely some of it is genetic. I’m more like my mom’s side of the family rather than my dad’s. For example, a lot of relatives on my mom’s side are diabetic as well, and there are a few heart bypass surgeries too. Sometimes I wish I had better genes, like people that can eat whatever and still are healthy and look good with minimal exercise.
I think my mom’s surgery went well and there doesn’t seem to be any complications, especially signs of stroke. Unfortunately, I am also going in for surgery next week so both of us will be recovering. My dad may be real busy for a few weeks taking care of both of us.
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My dad showed me the insurance statement from Blue Shield. My parents have a Medicare Advantage plan through Blue Shield. I though Medicare only paid up to 80% of medical costs but it looks like insurance paid 100% of my mom’s surgery, which came out to be ~$31,000, including one night at the hospital. I’m must surprised how fast the claim was processed. I’m still seeing claims from my ER visit and surgery from three months ago. Maybe that’s the difference between HMO and PPO claims.
The problem is that after orientation and four sessions, I’ve only seen a few nurses helping with the exercise portion. I have not seen or even heard mention of nutritionists or psychologists. Also, I hope they aren’t grading me at the end of the program (24 sessions) based on the above goals. There is no way I will meet the Weight/BMI goal since that means another 25 lbs of weight loss after losing 25 lbs post surgery. The blood pressure goal will be hard too. I only come in at ~140/80 after taking all three medications beforehand. My nephrologist will need to increase the dosage on something to lower it more. Likewise for blood sugar. I’m on less than minimal dosage with one medication only in case of a hypoglycemia repeat so we may need to increase dosage or add more meds.
Looking through my lab results, the last lipid panel I could find is from late 2016. In it, my HDL is 43, LDL is 71, triglycerides is 184, and total cholesterol is 151. The triglycerides number is a bit high but I think the numbers should have improved in the last three years. I just drew blood for labs that my cardiologist ordered; it included a lipid panel so I’ll know more next week. The rest of the goals are doable.
Like on dialysis days, I took all three blood pressure medications before going to rehab this morning. Once again, the meds were pretty effective. My starting blood pressure was 137/72 which meant no complaints or delays from the rehab nurses. Even though the gym was pretty full, there was no one on the treadmills so I didn’t have any problems with the cardio portion. My arms are still pretty weak though; I think they also look a lot flabbier than before surgery. All this from sitting around for four weeks?
One interesting observation. The treadmills face a large window which overlooks the entrance to a large parking garage for CHOC (Children’s Hospital of Orange County) employees. On the entrance, there is an electronic counter that show the number of open spots remaining. Each time a car enters, the number would decrease by one, and when a car leaves, it would increase by one. Anyway, on Wednesday morning, the signed showed only three spots were open at 8:00 am. Today (Friday) at 8:30 am, there were over 150 spots open. Does CHOC schedule less people to work Fridays or employees starting the weekend early? Make sure your kids don’t get sick on Fridays.
I complete another virtual hikes in Fitbit today. The hike is called Valley Loop and it was abut 36,000 steps. Like Vernal Falls, this hiking path is also in Yosemite National Park.
Like the previous virtual hike, there are a lot of scenic areas along the path were Fitbit uploaded pictures. This hike is very pretty too.
El Capitan
After Valley Loop, there is one more solo hike called Pohono Trail. It’s also at Yosemite National Park. This one is a bit longer; Fitbit has it at ~60,000 steps. At the rate I’m going, it’s going to take me two weeks to complete.
Today was my fourth acupuncture session and it was much longer. Usually the acupuncturist sets a timer and leaves the room. Today, I think she set the timer a bit longer but also had another client/patient in a different room. I can hear the timer go off but she didn’t come to pull out the needles until 5-10 minutes later. Instead of 25 minutes, it felt more like a 45 minute session today.
At the beginning, when she stuck the needles into my scalp, one of them stung pretty bad. She said it may have hit a hair follicle. Also, for the first five minutes, I felt a pinpoint pain in my left shin that throbbed with my heartbeat. I was going to hit the bell to bring her back but it subsided after 5 minutes. Finally, about halfway through the session, I could specifically feel the numbness increase around my right big toe. Typically the numbness is all over, like a large sock. I believe this was the first time that the numbness felt localized. I’m not sure if it meant anything but the acupuncturist was kind of excited when I told her. She is going to leave the needles in longer in future sessions to see if it will have more effect.
Just kidding. i think I only got three needles in the head.
I did feel more numbness while I was laying there but couldn’t tell if it was real or if I just imagined it. I which you could objectively measure sensations like pain or numbness instead of relying on an subjective feeling scale.
The three medication combo is definitely working. The first few readings are:
Time
Systolic
Diastolic
Pulse
Notes
9:10 am
145
88
Standing
9:18 am
151
83
61
Sitting/legs up
9:48 am
141
82
60
Sitting/legs up
Without all the meds, I was getting numbers like ~190/110 sitting. The NIFEdipine should last a few hours but one or both of the other medications will start getting dialyzed out of my bloodstream and the blood pressure will slowly increase.
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Here are the rest of the blood pressure reading from today:
More bad news. Each month, the dialysis clinic tests for dialysis clearance or adequacy. For hemodialysis, there are two measurements: Kt/V and URR (Urea Reduction Ratio).
Test
Limit
Prior Month
This Month
Kt/V
>1.2
1.199
1.0 something
URR
>65%
64.7%
60.6%
For some reason, both numbers have gotten worse. They are drawing blood today to retest. I did not provide a 24 hour urine collection this month but since last month’s 50 mL did not contribute anything to the clearance, I don’t think it will matters this month either.
Depending on the restest, they may ask to increase the dialysis time to four hours per session since they can’t increase the flow rate anymore.
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Whew! I just saw the updated test results. It only shows the URR value and it’s 65.0%. I think that meets the minimum requirements. The Kt/V is a calculated number. Since I cleared with a URR of 64.7%, the updated results should yield a satisfactory Kt/V value too.
URR History Chart
The super low number was when I was just to switched back to hemodialysis. It’s the result of inadequate peritoneal dialysis. I don’t know about all the other dips in prior results; I wasn’t asked to do more dialysis at the time. Maybe there is large variability day-to-day in dialysis effectiveness.
I believe the logic is that something is getting dialyzed out, but my blood pressure becomes too high during the session if I wait to take all the morning medicaion after dialysis. The 10 mg of NIFEdipine is probably there to offset other medications being dialyzed and we know that works well. They also didn’t want to move the NIFEdipine ER to the morning in case I get hypotension during dialysis. I still need to figure out how to time the 10 mg of NIFEdipine so the blood pressure is not to high during cardiac rehab either.
I also spoke to the cardiology nurse practitioner today. She mentioned that usually they defer to the nephrologist for dialysis patients since nephrologists are more familiar with how medications interact with dialysis. She did say that my prescription dosages are all quite low so there may be room to increase the dosage if necessary. Let see if the new medication schedule works any better than the previous schedule.
Life with chronic diseases 