I finally gave in and purchased a subscription to Microsoft Office 365. Up to this point, I have been using really old versions of Office. On my PC, I have an installer for Office 2007 from University of Indiana that does not need an activation code. I bought a home license for Office Professional 2010 for Windows but the activation code doesn’t seem to work anymore. On the Mac, I was using a really old version from Microsoft’s home use program, probably Office 2004 for Mac. That was working fine until I upgraded to OS 10.15, and that version of Office stopped working.
At work, we’ve upgraded to Office 2016 so I’m used to all the new features. I do have a work computer at home but sometimes I have to use my personal computer and I’m limited to Office 2007 on the PC and nothing on my Mac. I found out that because my work has an enterprise agreement with Microsoft, I can get a 30% discount on home use licenses. Originally I was going to get the family license since I have multiple computers and my parents also use Office occasionally, but since you can log into 5 devices on one account, any my parents can keep using Office 2007, I opted for the personal license. With discount, it’s about $50/year. I’ve installed it on my PC already. On my Mac, I’m out of hard drive space so I’ll have to clear some files out. Since I’m planning to get a M1 based Mac soon, I’ll be prepared when I do upgrade my Mac hardware.
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The subscription also comes with 1TB of cloud storage. That seems like an overkill. 1TB is a lot of data. I already subscribe to 100GB on Google and 200GB on Apple iCloud. I also have a 4TB NAS at home. The amount are ridiculous compared to my first “real” computer: Mac Plus with 1MB of RAM and 32MB HDD.
I was browsing Reddit and saw a comment about Sarah Hyland and her chest catheter. I didn’t recognized the name but when I Googled, I found out she was on Modern Family.
This is a selfie from the ER. I’m guessing it’s when her first transplanted kidney failed and she needed emergency dialysis, hence the chest catheter. I also found out that there are several celebrities that were on dialysis and received kidney transplants. Some of the names I recognized: Natalie Cole (singer), Tracy Morgan (SNL), George Lopez (comedian), and Sean Elliott (NBA). Maybe I’m secluded but I haven’t heard many celebrities, even those with kidney transplants, publicizing the need for kidney donors. If I had a bigger pulpit, I would talk about it all the time, now that I know how much dialysis sucks. I can understand if their kidney failed from drug use or neglect, but it’s still regrettable that there is such a huge shortage of kidney donors.
I’m more of a pessimist than optimist so I’m always worried about unknown stuff happening. Likewise for investments, I’m pretty risk adverse so I get worried when I buy stock. Anyway, only one day after the post-op meetings, there is a problem already. One of the blood tests that detects coccidioidal IgM antibody came back high. That indicates a possible Valley Fever infection. Symptoms include: fever, cough, tiredness, shortness of breath, headache, chills, night sweats, joint aches and muscle soreness, red spotty rash. That’s worrisome since I’ve been waking up at night in a cold sweat and I’m always tired. I just thought that was part of kidney failure and being anemic. However, I do have a rash on my lower back that’s showed up a few weeks ago. Again, I thought it was something else since the itch could be caused by high phosphorus levels.
Arg. Now I’m waiting for a call from the transplant center. They are scheduling me to see an infectious disease specialist, probably up at UCLA again. I read that in most cases Valley Fever will go away by itself. However, if I do have it, we need it gone by the time of surgery since the immunosupressive drugs will just make it a lot worse. I’m super worried that this will delay the transplant beyond my sister’s birthday and then there’s no telling how long the delay will be.
Sigh… why is everything so difficult?
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It turns out I also test positive for Epstein-Barr IgG and CMV IgG antibodies. However, it looks like 85% of adults also test positive so likely no big deal.
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I saw this NIH study that says if you test positive for Cocci IgM but negative for Cocci IgG, there’s an 82% chance that you’re not infected. That’s a pretty high false-positive percentage.
The clinical observation has been made that there might be an unacceptable number of false-positive enzyme immunoassay (EIA) test results for IgM among persons suspected of having coccidioidomycosis. Patients with a positive result for IgM by EIA are thought to have a diagnosis of acute coccidioidomycosis. However, this study found that 82% of patients with an IgM-positive and IgG-negative EIA result did not have coccidioidomycosis.
If you look by ethnicity, Asians seem to be overrepresented. There is also a chart by gender and it’s skewed towards females at ~8:5 ratio. The simple explanation is Filipino nurses. If you look at just my dialysis center staff, I would guess more than half are Filipino females.
Just had to post that before going to dialysis. Seven more sessions to go…
It’s been a long day. We were unsure about traffic this morning so we left the house at 8:15 am. My sister came and picked up me and my parents since she also has to go for labs and meetings. We got to Westwood around 9:00 am so we stopped by Tiverton House to check out the facilities.
One of the staff at the front desk was able to show us what the rooms look like. They are pretty small and don’t have cooking facilities. You can use the shared kitchen in the lobby, and breakfast is included. The room with two double beds is $179/night, and a room with a single king sized bed is $189. Actually, the rooms are kind of depressing so we may check out Airbnb to see if there are other options. The donor gets a few nights of paid accommodations for their family so my sister-in-law probably going to stay a few nights, and ask my parents to watch my nieces.
We arrived at UCLA 200 Medical Plaza at around 10:00 am. There was a long line at the main lab so we got into the virtual registration line. You send a test message to QLess and it keeps you informed of how long the line via test. There is also an app to update you with a big more details. I then went to radiology to get a chest x-ray which only took 10 minutes. I went back to the lab line and was called in pretty quickly, except it was just for registration, and the second line for service was 58-74 minutes long.
Since we had other meetings at the transplant center, we decided to go to the 5th floor, check-in, and have our parents wait in their lobby. At check-in, we found out that the lab draws were scheduled in the transplant center instead; we had read the instructions incorrectly. They were able to transfer my reservation upstairs but my sister had to go back down to the main lab to have her blood drawn. Confusing.
We waited for about 20 minutes and I was called in for labs. They drew 15 tubes of blood; I guess they’re testing for everything. That was followed by an EKG. Next, the transplant surgeon came to do a quick exam and an intake interview. After he was done, their nephrologist came and did a quicker exam and she also asked a few questions. Finally, a transplant coordinator came to tell me a few preparation items and another copy of the documents the they sent via Fedex Saturday. We were done at around 12:30 pm and headed home.
I got a few follow-up calls already. Most of my labs were fine, except my potassium levels are still elevated. They were at 5.9 last month at the dialysis center, and today’s test came back at 6.2. Again, I’m not sure what’s up with that since I’ve avoided high-potassium foods. Also, my creatinine is higher at 10.49, which translates to a eGFR of 5. This is lower than my typical 7-9 score. I don’t know if it means much at the low end of the scale, but maybe hemodialysis is becoming more ineffective for me? I’ll need to check my clearance numbers with the dialysis center. UCLA also said it won’t delay the surgery but they may give me another medication pre-surgery to lower the potassium levels.
So far, it looks like a go. Their nephrologist was very optimistic. Since my sister and I match very well, she thinks I’ll only need a minimum dosage of inmmunosupressive drugs post-surgery. She also kept saying that my hospital stay will be only three days. The coordinator said the room situation is still fluid but I still may be able to get my own room. Since that wing of the hospital is reserved for transplant recipients, hopefully it won’t be too full. All I have to do is keep my dialysis schedule, show up for a COVID-19 test in two weeks, and go back at 6:00 am on Wednesday, January 27th.
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The coordinator also said since my surgery is scheduled, they are taking me off the UNOS transplant wait list. No problem since I probably still have a good four years to go before getting a cadaver donated kidney.
I woke up several times overnight covered in sweat. I am still getting chills, mostly when lying down in bed. I would feel cold so I would use the electric blanket and comforter, but then it would get hot… but I still feel cold. Anyway, I got up at around 6:00 am so I turned on the news. Bad move.
It seems that COVID-19 is getting worse in California, and especially in LA County. I thought I heard it’s leading the nation in number of cases. What the hell? Again, what are these people doing that they’re getting so many infections? The donor coordinator said LA County Health Department shut down all operating rooms overnight last March and it could happen again. Not only will that make my sister need more tests, it will probably push the transplant surgery further out. What I’m hoping for is that they need to keep some transplant surgery capacity open for cadaver donor transplants, which can’t wait. If they need to have an isolated resources available anyway, they may keep the living donor surgeries going to be more efficient.
I does look like the curve is easing up at the end of the graph. However, much like looking at a stock price chart and predicting the future, we don’t know if it will pick up in a few days/weeks, or if we’re on the decline. Next two weeks will be nerve-wracking for sure.
Pre-op instructions said to take a brisk walk everyday so I went outside to walk again, this time to the park across the street. I initially had my mask in my pocket, but there were a lot of people out so I put it on after ~5 minutes. I ended up walking 1.1 miles at a pace of 23’31”. Not sure if that’s brisk enough but better than nothing.
I was surprised by the number of people in the park. There was probably ~40 people total, with one group having about 20 people. They were congregated around a few picnic tables, and no on had a mask on. Maybe they all live together (I doubt it). It seems crazy that with every hospital slammed by COVID, people are still gathering in large groups with no precautions. There were also many smaller groups without masks, as well as a bunch of kids on the playground set.
Not good. It’s definitely getting a lot worse. This is probably the inevitable spike in cases from people getting together irresponsibly over Christmas and New Year. The case count went from 379 to 406 yesterday at my work site. Starting this week, HR is also letting us know where and when the infected employee was onsite. There is nothing currently in my department area but the cases are pretty much all over. I am sort of pissed off at everyone getting sick. I had to stay pretty isolated for the past nine months, but the situation has gotten worse for me (and my transplant surgery) because selfish people can’t follow public health instructions.
I believe my company is still working on getting vaccines for our workers. I don’t know if the essential business covers everyone or just those that have to work onsite. Probably 50% of the employees can work from home. It’s a race to see what designation will get me vaccinated first: essential worker, immuno-compromised (post-transplant), medical history (diabetes + heart surgery), or just being over 50 years old.
I just realized that if everything goes according to schedule, I only have eight more dialysis sessions left. It’s kind of weird to think about something that is an integral part of your life just ending. It was hard to avoid letting dialysis become who you are, just like the tendency to say your work title when asked the question, “Who are you?”
It’s been awhile since I took a walk outside due mainly to the weather. I thought the walk may be challenging since some fluid may have gotten back into my chest cavity. Everything was fine though. I walked 0.92 miles at a pace of 21’33”. I didn’t have issues with my feet or my breathing. I probably could have walked more but I wore shorts and it was getting a bit cold.
Just spoke to my cardiologist’s office. My cardiologist had given clearance for the upcoming transplant surgery and also approved me stopping my blood thinner for two weeks. That was one of the last hurdles. Even though I spoke with her about it earlier, you’re never sure until the final clearance comes through.
BTW, my cardiologist is awesome. I would send her messages through the patient portal and she or her office would respond very quickly, usually the same day. Actually, I’ve been pretty satisfied with the care I’ve been getting from St. Joseph Hospital, from the ER to dialysis to regular doctor visits. The only blemish is their kidney transplant program. If the social worker had not rejected my sister for no reason, then we wouldn’t have to drive up to UCLA for every test and consultation.
I sent a short email to my boss and several co-workers letting them know that I may be out soon due to the upcoming transplant surgery. One of the ask how I was feeling about it. I guess things have been progressing so fast after waiting four years that I haven’t processed anything yet.
All this time, I thought I would have several months to prepare for the surgery. For my open heart surgery, they did the angiogram on Tuesday and operated on me Thursday. The situation was probably more urgent but no one offered me any options. After the angiogram, my cardiologist said it was too severe for an angioplasty. I saw the thoracic surgeon next and went ahead with the surgery. I don’t know if things would have turned out any different if I had two weeks to think about it.
I am a bit worried about COVID-19. I don’t think there is additional risk from sharing a room with another organ recipient patient since they are not allowing any visitors. The recovery area should be isolated from the rest of the hospital so likely it will be the safest area in the hospital. COVID-19 does add uncertainty to the process however. We don’t know if the current spike in cases will get worse over the next few weeks. They’ve assigned all the ICU beds to handle COVID patients. If they get more impacted, it’s hard to justify reserving available hospital beds for “voluntary” organ transplants while people are dying. There is also a chance that the county health department will shut down all non-emergency procedures like they did last March. I did send a note to my nephrologist and she reminded me that the situation can change quickly, even in normal times, so be prepared.
As for the transplant, it’s hard to imagine. Four years is a long time to get used to a situation and dialysis seems a “natural” part of life. I haven’t traveled for so long that I barely think about it, unless I’m looking through travel magazines. There will be more challenges post-surgery since there are lots of new medications to deal with, but almost every transplant recipient I’ve talked to says it’s a much better life post-transplant.
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Maybe as a reminder, my right foot started hurting while I was typing the text above. It’s at the bottom of my foot, a bit above the heel. Even after the transplant, I will still have a bunch of chronic health issues, especially the peripheral neuropathy which seems to have no cure. Sigh… time for Tylenol and a nap.
My parents got me a breakfast burrito for brunch this morning. They had to go see a dentist, and picked up food on the way home. I just weighted myself with and without the burrito. It weighs about 0.8 kg or 1.8 pounds. I guess it’s going to be breakfast, lunch, and dinner for me today.
Wow, when UCLA transplant center want things done, they move fast. From talking about a possible transplant date to almost scheduled in <1 day. We have our pre-op meetings set up for Monday already and we’re trying to confirm January 27th for the actual transplant surgeries. During the pre-op meeting, I’m supposed to meet with their nephrologist and the transplant surgeon, plus some more tests like a chest x-ray, EKG, blood labs, etc.
Due to COVID-19, I won’t have my own recovery room after surgery. I will need to share with another organ transplant recipient. The donor coordinator said I may get the half of the room with the TV or with the window view. I don’t care either way. I’m bringing my computer and iPad. I’d rather it for a few days bored rather than extend my time at dialysis.
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I just sent a note to my cardiologist regarding the last mini-hurdle to transplant. UCLA wants me off my blood thinner for surgery since they don’t have an antidote in case something goes wrong during surgery and I won’t stop bleeding. My cardiologist has okayed stopping for a week prior to surgical procedures, but UCLA wants two weeks. Worse case scenario, I would have to switch to coumadin, which is an older drug and needs a lot of monitoring.
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Just got another call from UCLA regarding the pre-op meeting. I have to do a chest X-ray and draw blood for labs before the appointments so I have to get there by 10:00 am. I’m not even sure what traffic is like anymore so I probably have to leave around 8:15 am. I also have to go back to get a COVID-19 test on January 25th. That’s going to suck… driving 100 miles and three hours out of my day just to get a 10 second nose swab.
Got a call from my transplant coordinator and they believe I do not need to stay in the ICU post-transplant so a scheduler will call me and my sister to schedule the transplant surgery. Yay! The coordinator thinks it will be sometime in February. There is still one very minor issue regarding my blood thinner medication but my cardiologist already said it won’t be a problem to stop or change the medication prior to surgery.
We still have to visit UCLA for a pre-op meeting a few weeks prior to the surgery for a final final clearance. Like my nephrologist said, it’s not over until new kidney is in and you’re peein’.
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Aiya! More complications to consider. My sister talked to the donor coordinator who said we may want to schedule the surgery ASAP. My sister turns 50 in early February. The transplant center may require additional tests, specifically a heart stress test and colonoscopy(!) after you turn 50. That means if we want to beat that deadline, we have 4 weeks to plan, meet, coordinate calendars. Her coordinator also said the right now they’re having patients share a room instead of having private room. I don’t care… at this point, I’ll live in the dorms if I have to. We have a call at 2:00 pm tomorrow to discuss the possibility of getting the surgery done within 4 weeks.
Weird. I woke up about 30 minutes ago and couldn’t figure out if it was 1:30 am or 1:30 pm, and what day it was. My first thought was that it was Wednesday at 1:30 pm and I had missed a bunch of work meetings. I was about to text out some apologies when I thought maybe it was Tuesday afternoon. However, I did have a work meeting earlier that was at 1:00 pm Tuesday so that got me more confused. I looked at the calendar app and the icon said Wednesday the 6th, which got me more confused since I remember going to dialysis “this” morning.
Sigh… it was not until I realized that it was 1:30 am Wednesday morning did everything fall into place. All my Wednesday meetings have not occurred yet. This is a problem when you sleep when you don’t have a good sleep schedule and nap whenever you can so you’re not totally fatigued all the time. That disorienting feeling was scary though. I also realized that I’m dreaming more often, even on short naps. When you dream, it feels like you have been asleep longer but I don’t think there is a correlation. I was having a weird dream, now forgotten, which made it harder to remember that I just went to bed at around midnight.
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So I got zero sleep this morning after posting the above. I pretty much stayed up reading Reddit until 7:00 am. I know I’m going to be tired later today so I need to find time between all my work meetings for short naps. I was going to go out to get my favorite breakfast burrito but I guess I’m scared of the out-of-control pandemic surge. I’m sure the virus can’t survive a hot griddle but the chance of getting infected is not zero, and now would be a bad time to get sick. So no breakfast burrito… I just got a cup of decaf and made a PB&J sandwich for breakfast.
Why is our government so incompetent? Is it because they have a monopoly in whatever they do? There doesn’t seem to be any sense of urgency or accountability to anything that they do.
I was talking to my sister on the phone, comparing notes between our two transplant coordinators, when the topic of the COVID-19 vaccine came up. It would probably be a good idea for both of us to receive the vaccination before going into surgery since there are a lot of sick people in hospitals. Anyway, we were trying to determine when I would be vaccinated based on the “Dialysis Centers” bullet point in Tier 1A. With me on the phone, she called the Orange County Health line and actually talked to someone. However, the customer service representative (CSR) basically told her to go look at more websites, including the California Department of Public Health. My sister was also told to call 211 to get our public agency help line for more information. That turned out to be a 10 minute trip through a massive automated answering system. I gave up and said I would ask the social worker at the dialysis center, but eventually she spoke to someone and I’m actually in phase 1C, using a totally different distribution system mandated by the state. So confusing.
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Under the state system, I would be in phase 1C, which is where I would be dialysis or no dialysis.
Just got a call from my transplant coordinator. I believe they have all the tests results and health records they need to make a decision. She said that their nephrologist would evaluate my case to see if I would require a stay in the ICU post-transplant. If not, then they can schedule the surgery. However, if it looks like I may need to stay in the ICU, then we need to wait since there are no available beds.
I always thought that I would need to stay in the ICU for a week. But looking back, I was in the ICU for only one day post-CABG surgery. Maybe a kidney transplant is not as intense as an open heart surgery. My doctors did say that this may not be the best time to be in a hospital recovering from surgery but I’m really tired of dialysis and want to get this over with ASAP.
Today was the “dialysis” day of 2021 and there was a personnel change. In the past, the dialysis techs would rotate to a different pod/unit every three months. They are still rotating but the schedule seems more random now. Anyway, my “new” tech is a younger guy that I’ve spoken to a lot before, but this is the first time he’s stuck me with dialysis needles. The first attempt was unsuccessful and very painful; he ended up calling over another tech and she was able to place the needles more accurately. It was fine but my arm did hurt for about 30 minutes at the beginning of the session. It’s about 1:30 pm now and it’s hurting again at home.
I also spoke to my nephrologist. She was there last Tuesday but had to run off before talking to me. I convinced her to raise my dry weight to 79.0 kg since my blood pressure is crashing (low) each session now. Today, I sat up near the end and it dropped to 85/58. I felt really sick and thought I was going to pass out. They stopped the fluid removal and pumped back about 250 mL of saline to try and stabilize my blood pressure. Hopefully the higher weight limit will mitigate the constant hypotension.
My nephrologist also said that it’s probably better to wait a bit on the transplant, if I get approved. She also does rounds in the main St. Joseph Hospital and she said the place is a zoo. People are waiting hours and days to get into the ER since there are no open beds in the ER nor the main hospital. She mentioned she saw OB doctors doing ER triage, which is not really ideal. Personally, she said five of her patients died from COVID this weekend; she has patients at various hospitals and facilities. The youngest was a otherwise healthy 27 year old. The dialysis nutrition also stopped by to chat and said they’re losing about a patient a day at the hospital due to COVID. I don’t know who still thinks this is all some kind of fake news but their attitude is killing people.
When I woke up this morning, my right big toe starting hurting. It wasn’t too bad having just started the cycle so I took two regular Tylenol pills and tried to sleep it off. I was pretty successful and when I finally got out of bed a few hours later, the pain didn’t come back. Fast forward to this afternoon. I took another nap after a work call and woke up again with pain in my right foot. This time it was on the inside of the foot, right under the big toe joint. Unlike this morning, this one hurt a lot more than anything I’ve experienced before. After each pain attack, my entire foot would go numb for a few seconds. I took another two Tylenol pills (PM version this time), and tried to go back to sleep. It was difficult since I just woke up, but managed to doze off for a few hours until my parents woke me up for dinner. The pain attacks were subsiding but I still experienced a few within the next few hours. It’s now 10:30 pm and I think it has finally subsided.
Again, these attacks are likely the result of diabetic nerve damage. However, having controlled my blood sugar and diabetes fairly well over the past few years, I thought there would not be any further deterioration in my condition. I understand if the body can’t heal from the damage but the nerve pain seems to keep getting worse. Maybe there is a lag in the blood sugar levels and [body system] damage?
I’m just hoping nothing reappears tomorrow morning during dialysis. It will suck even worse if I have to deal with nerve pain while sitting there for four hour5s.
Life with chronic diseases 