Daily struggles with dialysis > CABG > kidney transplant > fused right ankle > delayed tolerance program
I think I posted before about the three circles in Apple Fitness. The red ring is for calories from moving, minutes of exercise, and how many hours where you stood up. The standing goal is 12 out of 24 hours. I just got a “Perfect Week” award for hitting the 12x goal everyday this week. It’s really not that hard when you have to get up and pee every hour.
Weird. I got an email from Mint that my credit score changed by more than 10 points since the last update. I logged in to check and the score is now 816. I’m not positive but I thought the last score was in the 830s. The details given didn’t show me what specifically dropped my score. It doesn’t matter much anyway; I’m not thinking of taking out large loans. My “regular” debt is just the monthly credit card balance. The mortgage, car, and student loans are all paid off years ago.
The report did say there were some credit inquiries but they were for new bank accounts. I haven’t opened a new credit card recently either. Why does Goldman Sachs and JPMorgan need to do a credit check if I’m giving them money? Also, I opened accounts at Ally Bank and Barclay Bank at the same time and they did not do a credit check.
Another item was credit utilization. My was pretty low at 4%. I have a lot of old credit cards that I don’t use and was told not to cancel them since credit agencies like long credit histories. I recently got a credit limit bump on my main credit card. Maybe that dropped my utilization since I didn’t buy more stuff but got more credit.
Finally, it’s unlikely but maybe they have access to my UCLA Medical and St. Joseph hospital account balances? Most of it should be paid by Medicare and my work insurance but with almost four years of dialysis and a kidney transplant, probably over $1 million of bills have flowed through those accounts. Is that a plus or minus?
I’m not sure if there are condos for sale in the complex we’re renting, but Zillow has some off-market listings for this building. There’s an entry for a very similar two bedroom apartment for $1.27M. That seems crazy. My sister’s 2,800 square foot house is valued less than that. Our 2,300 square foot house in a pretty nice area of Orange is only $900k max. I guess it’s all location, location, location. Westwood Village is pretty convenient since most retail and restaurants are within walking distance. However, there are a lot of students living in this complex so the population is pretty transient, and college students are not the most considerate neighbors. Living in Westwood Village seems pretty cool. In an alternate universe, I could have lived here, though probably not in this exact complex. I hope $1.3M would get you better appointed housing.
Ha ha, just kidding. My sister came up to the apartment with her family to visit, and to drop some stuff off. We then walked to UCLA to show the campus to my niece. She’s only going to be a freshman in high school, but it’s never too early to thing about college. Anyway, since my leg is still somewhat injured, I was sitting next to the Bruin Bear taking a break. Suddenly, I recognized a voice calling my hame, and it turned out to be a current co-worker. We actually worked at the same company previously, so we’ve known each other for over 20 years.He was showing his daughter the campus too. She is a senior in high school so this is for next year.
He took a quick selfie with me in it to show our coworkers. I hope no one asks why I’m out on three months of medical leave if I can walk around fine.
My sister said she would come up to visit tomorrow. She lives in Irvine so it’s about an hour away without traffic. I told her to bring me my pillow and a heated blanket. I also need a good stainless steel water bottle to keep drinking water cool and close by. The apartment is nice but the wall are kind of thin, and it’s freezing. We’re not exactly sure how to set the thermostat so it will hold a temperature all night. It would blow hot air for a bit, then revert to 70°F. Even with the kidney transplant, I still anemic so I still feel cold all the time. Hopefully the new kidney will fix that too.
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Updated: 2/6/2021 5:45 pm
My sister drove up from Irvine at around 11:00 am and dropped off some stuff from our house. The best was my electric blanket that was a gift from coworkers during my open heart surgery. We then went for a walk around UCLA (see next post), and then we had cake since it’s her 50th birthday tomorrow.
After she left, my cousin and niece stopped by. This is my dad’s youngest brother’s oldest daughter and her daughter. They live pretty close by in LA. We never meet up though. The last time I saw them was around three years ago. As we get older, we really should meet up more. I need to spend less time working and spend more time living.
A different nurse from the same company showed up today at 5;00 pm. The prior visit was just intake and to fill out forms. This visit was also only 15 minutes. He took my vitals, listened to my heart and lungs, and took a peek at my incision. He actually asked me if I had an incision. What?! How did the surgeons transplant a kidney without cutting? Weird. I also told him about my wild blood pressure swings, with the high being 210/110. “Dangerous” was his comment.
That’s all. He said he would be back Monday. His role is supposed to check in on me post-surgery. I told him that I’m seeing the care team at UCLA Monday morning, but he said he was coming that afternoon anyway..
Out of all the labs results and vitals, my blood pressure (BP) has been hardest to control. It was like this before the transplant where I would take the exact same medications, but BP would vary from over 200 to below 100 for the systolic reading. Post-transplant, while recovering in the hospital, my BP has mostly been stable. However, after being discharged, it’s varying like crazy again.
Right now, I’m prescribed 25 mg of Metoprolol Tartate twice a day, plus 30 mg of Nifedipine ER in the morning. Instead, I’ve had to add an extra Nifedipine tablet at night since my systolic BP is nearly 200 at bedtime. It’s been mostly okay in the mornings before medication however. I guess with my orthostatic hypotension, it’s even harder to prescribe for. The last nurse practitioner I saw now wants me to measure my BP more often, and include sitting and standing readings.
I read online that some people take months to stabilize their BP post-surgery. I wonder why now that fluid balance is much better controlled.
I woke up this morning at around 4:00 am and my knee was hurting pretty bad. I was worried about damaging the new kidney during my accidental fall, but I was still peeing all night so that seems fine. My knee however, hurts whenever I put weight on it so walking was pretty difficult. I also got a bruise in the middle of my right palm so that hand hurts too.
I got to the clinic around 5:40 am and was done in about 10 minutes. Since the cafeteria did not open until 6:30 am, I sat downstairs and waited. At around 6:20 am, I slowly waddled over to the next building to get some breakfast. I looked like an old man, limping my way up some stairs into the cafeteria.
Instead of the same doctor, I saw a nurse practitioner that I have not met before. They have a huge team of people, and all seemed to be quite knowledgeable about my case. Again, everything looked fine. Most lab results out of normal range was expected, either from surgery or the new medication. My creatinine level came in at 1.4, which is just barely outside of the normal range of 0.7 to 1.3 for men. I don’t think I’ve ever seem my creatinine levels that low since when I found out about my kidney issues, I was already at stage 3 of ESRD.
They also reduced one of my anti-rejection medications. In fact, the attending physician wanted to remove that drug from my list but they decided to wait for another set of labs. My liver function was a bit off so we temporarily stopped two more medications. Potassium was about the same at the border between normal and high, and phosphorus dropped again to 1.7. I was told to try and adjust through diet before increasing the phosphate supplement. Other then my stupid fall, everything is going great.
The home health nurse may stop by today. It’s already 4:00 pm and I have not received a call yet. Due to my bum leg, I can’t go out for a walk anyway so I’ll just sit here and wait.
Oh so close!
Lab results from today was 1.4 for creatinine. This is a leading indicator of how well your kidneys are working. Normal range for men is 0.7 to 1.3. While on dialysis, my results were from 7 to 9; when peritoneal dialysis failed, creatinine levels shot up to close to 20.
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Post-transplant creatinine trend:
| Date | Creatinine |
| 1/11/2021 | 10.49 |
| 1/28/2021 | 6.74 |
| 1/28/2021 | 5.99 |
| 1/28/2021 | 5.35 |
| 1/29/2021 | 3.64 |
| 1/29/2021 | 3.47 |
| 1/30/2021 | 2.81 |
| 2/1/2021 | 2.2 |
| 2/4/2021 | 1.4 |
I think the next set of labs will likely have creatinine inside the normal range.
The home nurse company called yesterday to say that they were coming again at 4:00 pm today so I went for a walk around 1;30 pm. My dad was out all morning and was taking a nap so I went by myself. This time, I decided to go to the middle of campus and take a few photos. I have lots of photos of old buildings from before, but nothing from this century. I ended up walking about 2.2 miles and taking a hour to do so.
The campus is a mix of new and old. Some of the buildings like Royce Hall and Powell Library have been there for 100 years, while other are brand spanking new. I was an electrical engineering major so spent a lot of time in South Campus, especially Boelter Hall.
There is a depressing Math Science Library on the eight floor that I avoided at all costs. I studied mostly in my room. Hanging out in libraries was actually distracting for me since I needed some music playing, and these were the days of the Sony Walkman and cassette mix tapes. Here are the iconic UCLA buildings: Royce Hall and Powell Library.
Here is the UCLA mascot: Bruin Bear.
Finally, the engineering school is named after Henry Samueli. He was a professor at UCLA and was my instructor for EE113: Digital Signal Processing. I probably got a B in the class; I got a lot of B’s in engineering classes. He later founded Broadcom Corporation with Henry Nicholas, and donated $35M to get his name on the engineering school. The offices are in a nice new building called Engineering VI (used to be housed in Engineering IV). Classes are still in the very old Boelter Hall though.
I did get a bit winded since the initial part of the walk was all uphill. I remember walking this route daily for years while I was a student. Since the campus was closed, it was pretty deserted. Usually this would be the beginning of Winter Quarter and a busy time on campus.
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The worst part today was that I tripped over some “Keep Off Grass” ropes outside Royce Hall. I was trying to frame the photo nicely, and didn’t see/feel the rope. Bang! I tripped and fell on my right knee. There’s no cut or major bruising yet, but it hurt a lot walking the mile back to the apartment. I blame peripheral neuropathy..
I just got the 1/2 garlic chicken from Versailles Cuban Restaurant on Venice Blvd. It sure brings back memories. I used to come and eat here all the time while a student at UCLA. A bunch of us would come in, and while walking to our table, each of us would order the same dish: #6. I think it was $6.99 back then. Today, the price is $15.99. Tastes the same though. I’ve visited a few times after graduation. There used to be a restaurant in Manhattan Beach but that closed. I remember having a craving for #6 one night while I was married. We were living in Brea so my ex and I got into the car, drove almost an hour to eat garlic chicken, and then drove home. Glorious.
The only sad part is that I used to be able to eat the entire plate by myself. Now, both my parents and I could barely eat all of it. Old age, I guess.
Language Warning
Not sure how I found this but my new favorite artist, BIBI, is the female in black.
Here’s a much longer one with all the lyrics from each artist. So many English and Korean words.
Finally, someone mixed in a lot of homemade/uploaded video clips of the artist performing their section of the remix. Cool.
This screencap was from one of the last scenes in the movie Isle of Dogs. I had never seen this movie before and it was pretty good. It has a unique animation style and the storytelling was compelling. Anyway, in one of the last scenes, the ex-major (left) of the city is donating a kidney to his distant nephew (right). I’m sure this was not the setup during an actual live donor transplant. My sister and I were in different operating rooms, probably since there were two surgical teams and the setup above allows cross-contamination. It was just interesting I saw this on the fourth day after my own kidney transplant. My incision is also kind of center body below the belly button.
Close enough…
I decided to go for a long walk just now in Westwood. My dad was taking a nap so I gave him the slip. I walked from the Glendon Apartments down to the apartment where I lived during senior year at UCLA back in 1989-1990. It was about 1.77 miles round trip, and I averaged about 25’48” pace. It was tiring since there was a small hill on the way back, but it felt good to walk.
Here is the summary from Apple Watch. There were a few stops due to stoplights, crosswalks, and photo taking. The actual walking pace was probably a couple minutes faster. I walked the entire way with a mask on. It was okay but I would have preferred to not wear a mask while walking outside. Maybe when I get back home.
Some photos:
I did walk up Westwood Blvd. on the way back. It was pretty sad. About 50% of the storefronts were empty or boarded-up. Back 30 years ago, it was super crowded all the time. Even in high school, a few friends and I would drive up here from Torrance just to cruise around and eat ice cream at Swensons. I’m pretty sure that, and most of the stores from back then, are long gone.
Pretty amazing. I know this is how it’s supposed to work but still unbelievable. The new kidney is filtering years of toxic waste out of my bloodstream. Lab results are approaching normal just after five days. Here are some examples:
| Lab Test | 1/11 | 1/28 | 1/29 | 1/30 | 2/1 |
| Creatinine | 10.49 | 6.74 | 3.64 | 2.81 | 2.2 |
| BUN | 71 | 39 | 40 | 53 | 43 |
| Potassium | 6.2 | 5.4 | 6.0 | 5.2 | 5.1 |
| Phosphorus | 5.9 | 8.0 | 6.0 | 3.8 | 2.7 |
| eGFR | 5 | 9 | 19 | 25 | 33 |
I’m a bit unhappy with the phosphorus. Initially the doctor said it was dropping too fast and wanted me to get supplements. That was when it was at 3.8. The supplements had a co-pay of $50 with insurance. I know that’s small compared to the hundreds of thousands for the transplant, but still. I had the pharmacist double check but the doctor insisted, so what was I to do? Anyway, it’s now 2.7 and she said that’s fine. First she said to stop, then said to reduce from two pills to one per day.. I could have just eaten more milk, cheese, and tofu. Dang it.
Next lab is Thursday. I’m already at only two meetings per week when I thought it was going to be three or more. Probably spent too much $$$ on this apartment but probably good to be nearby in case there’s an unlikely emergency.
For my mandated walk today, I decided to walk to UCLA. My dad came along with me in case I collapse or the abdominal pain flares up while I’m walking. None of that happened. We were out for about 50 minutes.
We first walked to UCLA Medical Plaza 200. This is where my clinics will be, starting tomorrow at 6:00 am. It was only about a 10 minute walk, much much closer than my 90 minute drive from home in Orange County. My dad still wants to drop me off; it probably will take 10 minutes to get to the car in the underground parking, and to drive the three blocks to the Medical Plaza. Oh well.
Since it was Sunday afternoon, the campus was deserted. Except for administration and the medical center, it appears the campus is closed. Not sure why so there are still so many students living here in Westwood. Maybe they’re hoping school will open soon?
We then walked to the middle of campus and turned around near Engineering IV. That was my “home” 35 years ago, except that building was not there. Engineering school was in Boelter Hall which is a bit to the back and up a large hill. I’ve been back a few times but mostly at night to attend an event. I haven’t walked around campus since I graduated in 1990. Maybe I’ll spend the next two weeks walking it more.
First whole day of eating outside the hospital with new kidney. I was just focused on a few things:
For breakfast, I had some oatmeal, two pieces of white toast, and two fried eggs but only one egg yolk. For lunch, my parents went to Trader Joe’s and got a package of their Mandarin Orange Chicken. I cooked some white rice, made the entire bag, and cooked some green peas. We all ate from it and there was probably a serving left over. The only questionable part was the white rice. It came from a huge 25 pound bag from a Chinese supermarket so I don’t have the actual nutritional label handy. Finally, after a longish walk, I got lazy and got a small Jersey Mike’s turkey sandwich from across the street. I followed the dietician’s instructions and microwaved it for 15 seconds. Not enough to warm it up enough to taste weird, but supposedly enough to kill bacteria. Blood sugar ranged from 150 to 200 so I guess that’s okay. I also had some unsalted corn tortilla with the sandwich. I was trying to avoid salt and potatoes for now.
It’s a bit of work planning out menus. When I was married or lived by myself, I cooked quite a bit but never looked at labels. When I moved in with my parents again, they did most of the cooking and I just ate. After getting sick, I had to be more careful since Chinese food is not healthy nutrition friendly. You have to work at trying to get accurate nutritional information, especially from restaurants. I need to start doing stuff differently. I do feel like I have more energy so I can convert nap time to cooking time.
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A coworker also sent bunch of recipes so I have to give it a try.
A post-hospitalization home nurse came by earlier today. I didn’t know how to open the lobby door with an intercom so I had to go downstairs to find her. Of course it’s a Filipino lady. Anyway, she was here for only 15 minutes. Basically looked at my discharge information, copied down medication list and history, and took photos of all my past scars from various surgeries. I think she was expecting a ton of questions or that I would need physical therapy? I’ve been walking a lot already and recovery is light years better than heart surgery.
She did give me one tip. The pain from urinating after a foley catheter was removed will be a lot better if I drink cranberry juice. The burn is already a lot less but I’ll get some anyway. The coordinator from UCLA said that he only expects no more than two visits since I was recovering well. The nurse said today that she won’t need to come back unless I need them to. After surgery, I think there were a total of six visits from home nurses but I was a lot worse off.
Wow, I got a total of 15 prescription medications from the hospital before I left yesterday. They had to give me a large shopping bag to carry it all. The schedule is complex too. They gave me a pill organizer that has 7 days and four boxes per day. Each medication has a different schedule but most fit within the 8:00 am and 8:00 pm requirement. However, the initial dosage is high for everyone, then over time, they should decrease, especially for me since the kidney is almost a perfect antibody match. It just means the number of pills will change daily for a few weeks.
The scariest pills are of course, the anti-rejection medications. Two are immunosuppressants plus a steroids medication. the immunosuppressants are mycophenolate and tacrolimus; the steroids is prediSONE. Since I’m taking these pills, my immune system is weaker plus the drugs tend to increase my blood sugar so I also received three anti-infection medications plus an insulin injection pen for HumaLog. There are a bunch of other stuff too. This is about 90% of the 8:00 am medications:
Most of these drugs, especially the anti-rejection ones, are needed for the life of the new kidney lest your body kills it off. The co-pay for all that mediation post Medicare’s 80% payment was about $125, with $50 just for a phosphorus supplement. Hope that goes away, as well as some the ancillary medications. I can get them at UCLA for three months, then I have to figure it out with my doctors and pharmacist. It would be nice if UCLA can keep mailing me the meds but I think they need to move on to new patients.
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In order to keep track of all this, I created an Excel sheet with all the medications and will put in all the meds needed for the twice daily times. Otherwise I’m going to lose track of what to take when.
Overall score: 6/10
I had eight meals at the UCLA Ronald Reagan Hospital during my transplant stay. Meals started Thursday morning and ended Saturday afternoon. The first three meals were basically clear liquid meals supplemented by a dextrose IV line. It was some kind of broth (I got to taste all three: chicken, beef, vegetable), juice, sugar-free gelatin, and herbal tea. We didn’t get to choose the meal components; they were ordered for us by someone. It was barely okay since the broth was low salt and had no taste.
The rule to move to solid food was to be able to pass some gas. Fortunately, I farted a few times during Thursday evening so they took out the IVs and gave us a carbohydrate controlled menu. I was also grouped into LoK (low potassium), and Ph1000 (probably 1000 mg of phosphorus). That meant no potatoes or bananas… I tried and was shot down by the order taker. So for breakfast, I basically had an English muffin with egg, cheese, and a turkey sausage patty. For lunch, I got a grilled cheese sandwich with some salad on Friday and an teriyaki Asian stir fry today. For dinner last night, it was meat loaf with rice and peas. Of course, it should have been mashed potato but that order was rejected.
Top: meatloaf; Lower Left: vegetable broth; Lower middle: breakfast sandwich; Lower right: grilled chicken sandwich (didn’t look like chicken though). For breakfast, I actually ordered a blueberry muffin but got blueberry Greek yogurt. I found out I don’t like Greek yogurt.
I think the main problem is that it takes them up to 45 minutes to cook each order and have someone deliver it to your room. If it was a restaurant and you can get it hot off the stove, it would likely taste much better. Still, it was a bit better than the stuff at St. Joseph hospital and the menu selection was much larger.
Now the problem is I have to figure out new food restrictions and preferences. While on dialysis, it was important to watch sodium, potassium, and phosphorus. Carbs were not too much of a worry since you had too much insulin in your blood, and I think some of the sugars got dialyzed out. Also, food not cooked completely is pretty ok too. Now with new kidney and anti-rejection drugs, bacteria-free food is all important followed by carbs since anti-rejection drugs and steroids can raise your blood sugar. Sodium still has to be watched but potassium and phosphorus should not be a problem anymore. All this changes as the medication dosage changes too. So much to learn.
Tonight, I was too tire to figure out stuff so I got a Chik Fil-A grilled chicken sandwich plus a kale side salad. I figured not-fried protein should be a good start and carbs were only 40-something. I think I get 75 mg for dinner.
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I had a difficult time communicating new food restrictions to my parents. It took me years plus the help of a mandarin speaking nutritionist to get my mom to be aware of the needs of a dialysis diet. Now, the want a “simple” list from me about food, but it’s not simple so I have to figure it out first and maybe cook more on my own.
Life with chronic diseases 