It is really pathetic to be admitted to the hospital twice in one month but that is what happened to me. Since the doctors are closely watching my blood test results, I was asked to go to a local clinic last Thursday (October 2nd) for an additional test. Well, the results came back all crazy with 6.2 for Potassium, 20 for Tacrolimus, and 3.84 for creatinine. Those are basically kidney failure results.
Because of those numbers, we got a call from the transplant center asking us to visit the ER at the UCLA hospital. The drive is anywhere from one to two hours so getting the call at 7:30 pm was really inconvenient. Anyway, we ended up getting to Westwood at 9:00 pm, and even though it is not crowded, there are still no rooms available. After checking in and getting triaged, we were left in a “room” in the lobby for six hours. At 4:00 am, we were moved inside the ER but to a hallway spot. Two hours after that, we were moved to another hallway spot, next to the one I had during my last ER visit. Finally, I was moved to a small observation room with four beds but at least it had curtains.
It was now Friday noon. Long story short, I was discharged Sunday afternoon. I spent the entire time getting blood draws and saline infusions. They would try something to lower my potassium and tacrolimus numbers, then wait for a blood test to validate. It was not too bad except for the crappy bed/mattress. My back is still hurting.
I had an appointment with my orthopedic surgeon today. Finally, after almost two years (22 months) after I broke my ankle, he declared that it is fully healed from the surgery. A year ago, he was skeptical my ankle would heal on its own and was discussing further surgery or amputation. Luckily, I got a second opinion that convinced both of us to get a CROW boot so I can walk and wait to see if there is any healing.
I think I have insomnia from prednisone withdrawal. I was going to post something last night because I was wide awake at 3:30 am but decided to watch an anime movie instead. For weeks now I have not been able to sleep more than two hours at a time before waking up, and it is getting worse. I fell asleep around 5:00 am this morning and woke up at 7:00 am. Usually, I end up sleeping during the day since I am so tired, but the last two days I have not been able to take naps either. It is like pulling all-nighters in college.
I have tried taking Tylenol PM, which has diphenhydramine (Benadryl), and melatonin, but neither works. I have access to prescription sleep medication but with so many other pills I must take, I really want to avoid another one.
If you look back at my post about the delayed tolerance project, the consent form talked about the goal of this research as being “mixed chimerism.” This just means that both my immune system and my sister’s immune system can co-exist inside my body. The first test for this is scheduled for about four weeks after the stem cell transplant. They did take a lot of blood samples when I was discharged from the UCLA hospital on Wednesday, and the results came in yesterday morning during our follow-up appointment with the nephrologist.
Here are the results for me after four weeks. I do not know what they are measuring, and I have nothing to compare to.
The doctor did mention a few things but most importantly, the numbers look good at this stage. I will have these test every few weeks until the “donor cells” column drops to around 2% to 4%.
I just spent a week at the UCLA Ronald Reagan Medical Center. This is a continuation of the nausea I experienced during the radiation treatments earlier in August. By this point, I have not eaten anything for over four weeks. Additionally, both my lower legs and left arm were swollen for no apparent reason. There were a lot of tests done but most came back negative, meaning they do not know what is wrong with me.
Initially, the appointment on Wednesday, September 3rd was just a follow-up. Because my arm was still swollen, my nephrologist wanted me to go to the emergency room (ER) to see if they could do an ultrasound and remove any clots they find. Wrong decision. I believe a combination of an uptick in COVID cases and the fact no one has health insurance means a fully packed ER. The decision was made to admit me to the main hospital, but there was no room or beds anywhere. I sat in a tent for ten hours waiting for open space in the ER hallway, and spent the first night sharing the space with four other patients. The next night, I was moved to to the general observation unit, which meant my own bed but no en-suite bathroom. All the while, I was freezing to death.
UCLA 200 Medical Plaza
Finally on the third night, I was moved to the oncology wing of the hospital. Here I finally got my own room, but it was on the floor with cancer patients. I had to wear a mask and be super quiet. Throughout this time, they were taking vital signs, drawing blood, and feeding me new medication. None of it helped my feeling of nausea. At one point, the GI team wanted to do an endoscope but could not schedule me until Tuesday, thus pushing the earliest discharge date to Wednesday. So, I spent an entire week in the hospital without really learning anything except getting a bunch of new pills for my troubles.
Now that I have been out of the hospital for five days, I feel much better. I suspect that my nausea would have improved on its own without the hospital visit. It is a good thing that the transplant clinic is paying for all the cost for the research study. Seven days in the hospital is not a cheap stay.
UCLA is a great public university and a medical center. I attended UCLA back in the 1980’s so I am still reaping those rewards today. However, when it comes to commuting to the UCLA campus from South Orange County, it could take up to two hours each way. For the past three weeks, we have been driving to and from UCLA most mornings and afternoons.
With all their resources on the Westside, you would think that UCLA Health would expand more into other areas of Greater Los Angeles. In South OC, there are only two hematology/oncology clinics, one in Irvine, and one in Laguna Hills. I have gotten some blood work done at those two locations before, saving me time and money from travelling to UCLA campus. Since I need saline infusions for the most recent medical fiasco, I asked if I could get them in South OC. I did not much much expectations, but everyone came through on scheduling. As it turns out, they offer chemotherapy and other infusions at both South OC sites, so I moved all my future appointments down here. The first visit is actually today in about 90 minutes at the Irvine clinic. This makes a sucky situation just a little bit better.
Yesterday (Wednesday) was the only visit this week to both the UCLA kidney transplant center and oncology center. I met with both doctors, and they were very happy with my blood test results so far.
The first test they mentioned was for platelet count. The count was supposed to drop due to the radiation treatment but should improve once the treatments wore off and my body recovers. From the chart, it does look like that is happening, but not the side effects.
The next result is for white blood cell count. Again, the number should drop but the cell count is also looking like it is increasing again after radiation treatment.
Finally, the last test they discussed was for absolute neutrophil count. The normal range is from 1.80 to 6.90 x 10^3/uL, whatever that means. My nephrologist was happy that the count is increasing again without ever dropping below 1.00.
The only other numbers out of range were for creatinine, since I am still dehydrated from nausea, and some lymphocyte measurements. Overall, I feel good about the progress, and look forward to see if the stem cells take in two weeks.
The nausea, however, is still bad as ever. I received 1000 mL of saline again today, along with IV Zolfran in the kidney transplant clinic. As soon as I got home, I dry-heaved over ten times in a row. After resting and sipping a cup of Campbell’s chicken noodle soup, I threw up again just now. So instead of sleeping, I am blogging instead.
I thought I was getting better from the nausea effects, but I was wrong. I held down a lot of fluids since yesterday, but I just threw up again at 4:00 pm. I made a mistake with some peach tea. I asked for some of this from Vita and it seems that I received peach acid instead.
It took about six regurgations to clear our my stomach. This, of course, caused much more damage in terms of stomach acid and abdominal muscle movement. Afterwards, I can clearly see some new acid burns on the sides of my tongue, and my entire chest has been burning for the past 90 minutes.
This sucks. I have to endure three hours in the car tomorrow as we drive to UCLA for this week’s doctor appointments. At least I only need to go once, hopefully.
I have embedded the last copy of the recipient consent form as a PDF above. WordPress has convienently included a viewer so readers can play along at home. I am going to start on page 5 of 32 and give my side on how each day was.
Visit 1 and 2
This was pretty easy. I spoke with the radiation oncology doctor briefly and his technicians put me in a CT scanner to map out the areas they want to irridiate. I did get a plastic mask, and nine tiny tattoo dots, which I did not know about beforehand.
Not me
Day 0 (August 4th)
Blood test at 6:00 am
First rATG infusion and meeting with nephrologist at 8:00 am
Bad reaction to 250 mg of prednisone so we had to pause the infusion several times
Due to breaks, infusion not over until 5:00 pm
Rush downstairs to radiation oncology to undergo first TLI treatment
Finish up at around 6:00 pm
150 mg of Anti-thymocyte Globulin (rabbit) in 250 mL of 0.9% salinePICC-line in my left arm; they are still worried about my fistula in right armVarian (Siemens) Truebeam radiation oncology system; it kicked my ass
Here is the website to the Varian radiation machine.
At this point, I rented a room at The Tiverton close to campus. This is UCLA Health’s hotel for patients. We planned to stay for two weeks, but after getting a room with loud AC and bad mattress, we only stayed one week to August 8th and drove from Orange to UCLA daily for the second week. The rooms were about $200/night and include free breakfast.
The Tiverton Room 388
Day 1 (August 5th)
Blood test at 6:00 am
rATG infusion at 8:00 am plus meeting with nephrologist while on the chair
Lower prednisone dose at 200 mg
Infusion goes faster and I was done at 3:00 pm
Meet with radiation oncologist for review and everything is great
Undergo TLI imaging; machine not scary anymore
Got back to The Tiverton at 4:30 pm, slept, and had In-n-Out for dinner
Day 2 (August 6th)
Basically same as Day 1 except no meeting with radiation oncologist
I do not remember receiving any x-rays, but they could have taken it with the huge radiation machine without me noticing
Day 3 (August 7th)
Same as Day 2
Almost all my lab results come back within expectations
Day 4 (August 8th)
Same as Day 3 with prednisone lowered to 80 mg
Day 2 and 3 prednisone were 160 mg and 120 mg respectively
ALL DONE with rATG infusions with five total
Also going home for the weekend!
Day 5 (August 9th)
First day off from treatment over the weekend
Shit hits the fan at around 2:00 am when I feel massive nausea and start vomiting
I had lunch and dinner plans with my family but sat at home throwing up
And did I mention massive pain the the upper abdomen?
Day 6 (August 10th)
I woke up early enough but did not feel like going to church to throw up
We also discover that my left arm, the one with the PICC-line, looks a bit swollen
We stick with our decision to drive to UCLA daily
Day 7 (August 11th)
Half-way there!
We wake up at 4:00 am to get to UCLA by 5:45 am for labs
Meet with nephrologist at 8:00 am; inform him that I am dying (feels like)
Nephrologist orders 1000 mL of 0.9% saline for me
Following IV infusion, I continue my TLI treatments in basement level 2
Drive home around noon from UCLA; roads in Los Angeles suck ass
Day 8 (August 12th)
Got up at 4:00 am again
Meet with Bone Marrow Transplant (BMT) doctor; he is concerned about left arm
BMT doctor orders ultrasound for left arm to look for clots due to PICC-line; after hour of negotiating, it is scheduled for 9:15 pm on Thursday night
Doctors decide the nausea is a side effect of the TLI radiation; I go to the next treatment regardless
Day 9 (August 13th)
🎉 Happy birthday to me!
Of course the nausea gets worse; I did not have any drink or food or sleep since Monday
Also got 1000 mL saline infusion after labs at 6:00 am
On the way home after labs and TLI treatment, I call Tiverton to reserve two nights; first one for same-day, and another night so we do not need to drive home after night ultrasound
Every nurse wishes me Happy Birthday while I feel like death
Day 10 (August 14th)
Staying at The Tiverton is not much better than driving; why does every room have super loud AC?
Late-night ultrasound in Santa Monica is spooky, and parking was still $37 for 30+ minutes
Preliminary ultrasound results suggest a clot caused by the PICC-line, but I am only to use it once more for the actual transplant, so we leave it alone
Ultrasound doctor and technician tried to convince me to visit ER; not at 10:00 pm on a Thursday… fuck that
Day 11 (August 15th)
💉 Today is the big day!
Even with worsening nausea, I have been undergoing TLI treatment on Days 9, 10, and 11 (today)
I get another 1000 mL of saline infusion, followed by the tenth and final TLI treatment
Meet with BMT doctor and gets a hospital bed to receive my sister’s stem cell donation
I fell asleep and it was all done!
Day 12-15 (August 16th to 19th)
Over the weekend, I still have massive nausea attacks and pain
None of the drugs given to me for nausea really work at all
I am now weaned off prednisone, but doctors added Myfortic plus several anti-viral medications
Still getting labs done early in the morning with saline infusion and doctor meetings Monday and Tuesday
Day 16-21 (August 20th to 25th)
Drove back to UCLA on Day 17 (Thursday) for final meeting with radiation oncologist who is convinced my nausea is due to his machine
I rejected a saline infusion since the PICC-line was removed on Day 15 and I did not want to drip 1000 mL through an IV port
Nausea is holding, which means still no drink/food/sleep
Day 22 (August 26th)
Today is Day 22!
I feel a bit better this morning. I have been able to hold down sweet drinks since yesterday, but not take full gulps. Also still no food. I think I found my new favorite drinks: Korean taro milk, chrysanthemum tea, some peach juice, and 冬瓜茶 (winter gourd tea).
Here is the link to UCLA Health’s website explaining the research behind immunosuppression-free kidney transplants. Delayed just means you do the STEM cell transplant after the transplant and not concurrently.
There is another research program that transplants both the kidney and the STEM cells together. I was considered for that program but was rejected due to a cyst in my sister’s donated kidney. Here is a video from the UCLA website above about the first research couple in the delayed study. My sister and I are couple number six.
Dr. Jeffrey Veale was my surgeon for the kidney transplant and he is awesome. He put my sister’s kidney in my left lower abdomen. He is from Alberta originally. Canada 🇨🇦＃1️⃣ ‼
My program was for two weeks of treatment followed by the STEM cell transplant. My Day 0 was on August 4th, 2025. I will have updates on each day later.
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I believe this is the original concurrent tolerance study at clinicaltrials.gov and NIH.
When I quit my job last year, I elected to receive COBRA coverage instead of looking for my own health insurance. Due to federal law, I was eligible for eighteen (18) months of coverage. The cost was from $650 to $700 per month for health, dental, and vision insurance. Other than changes in the mail order pharmacy provider, there were no significant changes in coverage.
After eighteen months, there is a California law that provides an additional eighteen months of COBRA coverage, called Cal-COBRA. I checked with the benefits team at my old employer regarding my eligibility and was told that I would not be covered since the company was considered self-insured. I am familiar with this part since I was the company treasurer, and I paid the $million insurance bill every month.
Like everything in this world, it is not a problem if it can be solved with money. If I am no longer eligible for COBRA coverage, I can simply go online and buy my insurance. I was told in the past that our company’s coverage is equivalent to a high silver plan. Since we used the Blue Shield of California network, that is where I looked first.
The first thing you notice is the very high primium cost for any plan. Looking through my current coverage, it appears to be better than the Gold 80 PPO plan shown above. There is a Platinum level plan, but the cost is over $2,000 per month. For just one person.
For now, I will need to verify the answer given to me by the benefits analyst. Her first email said I was eligible for Cal-COBRA, but a subsequent email five minutes later said otherwise. I want to stay with Blue Shield for ease of transition, but I should also check the healthcare exchange to see if there is a better deal.
I recently saw a YouTube video that mentioned the average weight and height of American males and I was very surprised. From the CDC National Center for Health Statistics, here is the data for men and women ages 20 and older.
Men: Height in inches: 69.0 Weight in pounds: 199.8 Waist circumference in inches: 40.5 Women: Height in inches: 63.5 Weight in pounds: 170.8 Waist circumference in inches: 38.7
Since I moved from Taiwan to Canada/U.S., I have considered myself fat or overweight. Depending on the scale used, I am currently around 220 lbs. I am also 71.5 inches, and my waist size is 38 inches for Levi’s jeans. Compared to the average American male, I am 20 lbs. overweight, but 1.5 inches taller and have a waist size 2.5 inches smaller. I have lost 15 lbs. in the last three months and I think I can get to a weight of 200 lbs. in a few more months.
I do not think I look average or fit at all, but my numbers are pretty close to the American average. Is everyone in Americal just overweight?
Just a quick update on my ankle. It has been over 18 months since I injured it.
Here is the last x-ray from my appointment on March 31, 2025. The comparison above is from September 3, 2024. You can see definite improvements in bone formation and density in the diagonal “crack” from the ankle to the heel. During the appointment, my surgeon said I could start walking in regular shoes, but suggested I keep using the walking boot for longer distances. The first time I walked around the block, my right leg, ankle, and foot were sore afterwards, so I kept using the boot for another few months. I just started wearing shoes on both feet again, and everything has been fine since the beginning of June.
Going out without using the boot has also let me drive more comfortably. It was difficult to control the pedals with the boot on, so I avoided driving too much. With shoes, it is much easier to drive, and it also feels more natural.
Let us hope the ankle keeps improving. I have another appointment with my surgeon on June 28 so I will get another x-ray view of the ankle.
I saw my orthopedic surgeon early this morning. This is the three month follow up appointment after I started wearing a CROW boot for walking. From the x-ray images, the doctor said it looks similar to the results from three months ago. There may be some minor improvements, but it is hard to tell. He did say the ankle is definitely not worse, which was my biggest fear. A worsening ankle will lead to more surgeries and possible amputation.
The surgeon said to keep everything the same and make a follow-up appointment in three months. I was hoping that he would allow me to walk without the boot, but I am happy with the current results.
I received a bill from Natera today. This is for the research study I participated in post kidney transplant at UCLA. For almost three years, I had blood drawn quarterly at home for early detection of any signs of kidney rejection. This was all covered under Medicare.
After my Medicare coverage ended, Natera or UCLA wanted one more test. I was told by my rep at Natera that this would be covered by my work insurance. Even if it was not covered, Natera will cover the cost. Well, the bill I received was for $50. The original charge was $1,591 and my work insurance paid $1,541, leaving me with a $50 bill. The amount is low, so I am fine with paying it, but I am frustrated with all the billing bureaucracy and surprise billing.
Why does it cost so much to do a blood test, even if it is specialized? I received another bill from Quest for lab tests. This was denied in error by my insurance, so I was billed $1,327 for a few blood tests. Since I have a lot of doctor visits and tests, I have many wrongfully denied claims which leads to many bills from providers. It is such a timer suck to deal with all this.
I mentioned in a previous post that I was prescribed Cymbalta, primarily for anxiety, but the medication also helps with neuropathy. Over the past six months, Cymbalta has helped as the number of neuropathy attacks have decreased in frequency. However, it does not eliminate them altogether.
Yesterday, I had an attack on my right foot. It was more a buzzing numbness rather than pain. The weird thing was that the attack was on my lower leg instead of my foot. I have never experienced any neuropathy that high up, and I am worried this is a new trend. This morning around 2:00 am, I woke up to a new attack on my left big toe. This one hurts a lot and is about an 8/10 on the pain scale.
I took two Tylenol PM pills and so far, it has done nothing for pain or sleep.
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Ouch. The neuropathy attack in my left foot has gotten worse. I was unable to sleep after I made this post so now I am really tired and in a lot of pain.
This will be a pretty long update since it has been over seven months since my last ankle post. The bad news is that I still cannot walk without medical devices, either using crutches, a wheelchair, or my new walking boot. I only had six weeks in 2024 where I was walking with both feet in shoes.
After the May meeting with my surgeon, I was provided with a full coverage cast, which caused all sorts of anxiety. So, the next time I visited, the surgeon let me go back to using an open-toed cast. I continued to use the bone stimulation machine, even to this day. I am still unsure if the thing works as advertised.
June 12, 2025July 3, 2025
The left photo is when I removed the full coverage cast. You can see that the cast pushed my big to to the right. Since I was experiencing cast anxiety, it was replaced by an open-toed cast. The right photo is when the second cast was removed. I cannot remember if I got another cast, or the surgeon let me use the airboot from before.
Around this time, I was told that x-rays did not show any improvements, and I should reconsider another surgery or jump straight to amputation. Since my work insurance (now COBRA) provided a second opinion service through 2nd.MD, I thought it was worthwhile to check with their specialist. After speaking to another orthopedic surgeon from USC/Keck, it was suggested that I try using a Charcot Restraint Orthotic Walker (CROW) boot first. My surgeon had told me about the boot, but he did not think it would improve my situation.
This is a comparison between September 3 and October 21 x-rays. At the September appointment, my surgeon wrote a prescription for the CROW boot. It is custom fitted to each patient’s leg/ankle/foot, and it costs $3,000 before insurance. I paid about $300 copay. I received the boot in early October and there seems to be a very slight improvement in the ankle fracture area. I was told to keep wearing the boot for three more months to see if there is additional healing in the ankle. The next appointment is in two weeks.
I have been wearing this boot for almost three months. The boot is too large to drive comfortablly so I am still using my left foot to drive. Fortunately, Tesla offered another one-month free trial of their full self-drive system, which greatly reduces the need to use the accelerator or brake pedals. I can walk short distances with the boot, but my ankle gets sore when I walk far. The boot is not too heave but gets really hot internally. I usually wear a thin compression sock or my lower leg will sweat all over the foam insert. It is definitely clumsy but manageable, and much better than using crutches.
My ankle also feels fine. No sharp pain nor are there any metal parts sticking out of my foot. My hope is that the ankle bones have been healing well, and that I can walk without the boot. If so, I plan to make small road trips in the next few months. My niece is planning her senior (high school) trip to Asia for this June, and I want to go too.
I am currently using the Abbott Libre 3 continuous glucose monitor (CGM). In addition to falling off my arm easily and wasting a sensor, it is also wildly inaccurate. I have been checking the last two sensors with a finger prick glucose meter, and the readings can be off by more than 50 points high or low. That makes a huge difference when you are shooting fast-acting insulin on a sliding scale.
Additionally, I have received several low glucose alarms on my phone from the connected CGM. The alarm is loud and is designed to wake up so you can take action to prevent hypoglycemia. However, this one is fake. I checked with the regular glucose monitor and it read 114 mg/dL, well within the normal range. If you check the app again, the low reading is gone from the chart. How am I supposed to trust any readings from the CGM sensor? Am I risking shooting too much insulin before each meal? Or not enough?
Not much has changed since the last update. My surgeon moved my appointment out to this coming Wednesday due to a schedule conflict. I have been using the bone stimulation machine daily but there is no way to tell if it is effective or even working at all. I have been sleeping both upstairs and downstairs depending on how I feel. I did have some visitors, including friends from my current church and old church.
Healthwise, I got blood tests done for my nephrologist and orthopedic surgeon. This coming week I have three doctor appointments and it was a bit of a challenge to arrange rides. I can drive, but I am concerned about limited disabled parking at the doctor’s offices, and charging since my home charger blew up. I am still experiencing all the panic attack anxiety symptoms and had the worst cold flash ever yesterday. The cast is now very loose, but still putting a lot of pressure on my upper ankle. The neuropathy seems worse than ever, adding to my discomfort.
Adding to all this is a growing feeling of jealousy towards people that can walk. From friends and family that visit, to people I see while out eating. The thought that I cannot get out of my mind is, “Why me?” I am not a bad person so why am I always suffering? Why do other people get to live normal lives while I cannot walk and have this possible catastrophic problem in the future? This of course triggers my anxiety, so all my symptoms get worse. I experienced the same thing after my divorce, after heart surgery, and during dialysis. I know it is a useless line of thought, but I cannot seem to stop it. I know this will get even worse during the summer as people go on vacation, so I am looking for a counseling coach or therapist through Lyra Health. They offer some mental health resources through my work’s heal insurance.
I felt a lot more warmth today. I am not sure if it is real or just another symptom of neuropathy. My next appointment with the orthopedic surgeon is on Wednesday. I wonder if he can tell if the bone stim thingy is working or not after a week.
Life with chronic diseases 