Russia has been stepping up its attack oh Ukranian infrastructure and this is the fifth week in a row where my student/friend has no power at work. He can still moonlight at his coding job working on a laptop and battery but it slows everything down. Since winter is coming, it is going to suck a log more when there is snow on the ground.
Russians are just being terrorists now, bombing civilian infrastructure. Why is no one mentoning this fact in the United Nations, and why is Ukraine strill not allowed the use of long range cruie missiles to take out Russian power and natrual gas infrastructure?
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 got another blood test on Monday, and it shows my tacrolimus levels are twice what the target is. My UCLA nephrologist said it was the anti-fungal medicine interacting with the tacrolimus, driving up the test results.
I do not remember why the number shot up to ~40 while I was in the hospital and why no one mentioned it to me. It was also before I started taking the anti-fungal medicine so who knows.
The side effects, especially insomnia and dizziness, have been bad. I passed out for a brief second and fell last Thursday at my primary care doctor’s office. I am afraid of passing out even to go to the bathroom. I also have not slept much during the past four days. I must take the anti-fungal medicine for another seven days so I hope this episode of side effects will taper off and I can go back to feeling normal.
I stayed in the room for five days several weeks ago following a trip to the ER. They could have done everything outpatient. Instead, I got to spend an uncomfortable week in the hospital sleeping on their terrible bedding.
First just let me show them in a list from Mayo Clinic:
More common
Abnormal dreams ✅
agitation
chills ✅
blurred vision ✅
confusion
cough ✅
diarrhea ✅
dizziness ✅
dry mouth ✅
fever
flushed, dry skin ✅
frequent urination ✅
fruit-like breath odor
general feeling of discomfort or illness ✅
headache
increased hunger ✅
increased thirst ✅
increased urination ✅
itching, skin rash ✅
joint pain
loss of appetite ✅
loss of consciousness ✅
loss of energy or weakness ✅
mental depression
muscle pains, trembling, or twitching
nausea ✅
pale skin
runny nose ✅
seeing or hearing things that are not there
seizures
shivering ✅
sore throat ✅
stomach pain ✅
sweating ✅
swelling of the feet or lower legs
tingling ✅
trembling and shaking of the hands
trouble breathing
trouble sleeping ✅
unexplained weight loss ✅
unusual bleeding or bruising
unusual tiredness or weakness
vomiting ✅
Less common
Chest pain
increased sensitivity to pain
muscle cramps ✅
numbness or pain in the legs ✅
ringing in the ears
Rare
Enlarged heart
flushing of the face or neck
weight loss ✅
Out of the plethoria of items, I have had the joy of experiecing about one-half of them. The latest theory is by taking the anti-viral aimed at my throat infection, I need to take down my tacrolimus intake by one, leaving the doctors without much room to manueuvr. I need to take tacrolimus but with only one pill, the test returns 12.0. I was nornally at 6-8 previously, but now they want it to be over 10.0, whlich will trigger more side effects in quantity and intensity.
Looking through all the documents the hospital generates, I dug around and found a Tacrolimus tapering schedule based on body weight:
It is a total shit show. I have been put on insulin since my kidney transplant and in the last four and a half years, I cannot make any sense of the pricing. I have paid $0 for an insulin pen, but also $6, $12, or even hundreds for the same pen. Each time I switch insurance or the insurance company changes formulary, the pricing goes to hell. There are manufacturer copay coupons that seem to work once then disappear.
I am reviewing my insurance copay charges for the past month and I see a $227 charge for six Toujeo (long-acting insulin) pens. They come in a box of three and was supposed to cost me $60 for three months. Why $227 suddenly? Our company insurance changed from Optum to Costco for mail order. Why should that matter? Who knows? 🤷🏻♂️
What is worse, Costco called me to warn me about the high copay so I placed the order on hold to figure out what is happening. Then the order ships. I check Costco’s Rx website and it says $35. That seems like a good price. They next ship Novolog pen infills without a price and luckily it was free this time. Complete chaos, even for me with a thirty-year finance career.
So the end result was that I got my both my long-term and short-term insulin for the next three dollars for $35 total.
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.
I did not know this was a real thing. I always thought withdrawal was something associated with addictive substances like alcohol, tobacco, or opioids. Anything that adds or removes chemicals from your body consistently can be “addictive” over time.
Predisone withdrawal, or steroid withdrawal syndrome happens when you stop taking a medication or taper off too quickly after prolonged use. I started taking prednisone right after my kidney transplant in January of 2021. For most of the period, I needed to take 5 mg of prednisone daily. I knew there were many nasty side effects with prednisone, but I have not seen the entire list.
Common physical symptoms:
Severe fatigue and weakness: Feeling unusually exhausted and lacking strength.
Aches and pains: Muscle aches and joint pain are common as inflammation returns.
Gastrointestinal issues: Nausea, vomiting, loss of appetite, stomach pain, and diarrhea.
Headaches: May range from mild to severe.
Dizziness and lightheadedness: Often caused by a drop in blood pressure.
Weight loss: May be experienced due to loss of appetite and other issues.
Fever: Some people may experience a low-grade fever.
Mental health symptoms:
Mood changes: Can include irritability, mood swings, anxiety, and depression.
Other psychological effects: In more severe cases, delirium or confusion can occur.
I believe in combination with the radiation treatments, most of my suffering in the past three weeks can be attributed to withdrawal from prednisone after four and a half years of daily use. I have experienced major reaction listed under the physical symptoms section. At least I am no longer taking any prednisone related to the kidney transplant nor the delayed tolerance study.
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.
While we are posting music, I remember this song from way back as the theme song for Star Trek: Enterprise. It was a TV series about the first warp-capable USS Enterprise in the Star Trek world. I thought the song was really pretty.
Fast forward to today. While I was watching the UCLA video from Dr. Jeffrey Veale, I suddenly remembered the song and looked up the lyrics. How did I not know it was a Rod Stewart song!?
Better audio from Spotify but just a preview snippet.
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.
After looking up more information online, I believe I found a small article in The Lancet regarding the delayed tolerance program. It looks like a short update on the same brother/brother couple discussed by Dr. Jeffery Veale in the YouTube video from several posts ago.
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).
After twenty plus years of blogging, I am finally paying for something. I started with Xanga, then to MySpace (who remembers Tom?). When I started posting for real, I used Blogger.com from Google but stopped when I got sick from ESRD. In 2019, I restarted blogging using this site at WordPress but never liked the ads and URL.
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.
==========
I believe this is the original concurrent tolerance study at clinicaltrials.gov and NIH.
My home central AC system has been iffy for a few years. The compressor would trigger the breaker, then we would need to reset them (two x 25 amps) and try again. Well, this week, it completely gave up and would not even turn on. After a short debate, we decided to get a new unit since the old one basically came with the house, 38-years ago.
Here is the installation guys taking a long nap waiting for the new concrete base to dry.
The new system is silent compared to my old AC system, but the fan seems blow slower. It takes longer to cool the house, but hopefully taking much less energy doing so.
The new system costs $17,500 with a $2,000 tax rebate from the feds at the end of the year.
Life with chronic diseases 