Category: Kidney Transplant

High Blood Sugar

A kidney transplant is supposed to fix a whole host of sins. Most of my lab results are much better, but there are still a few problem areas: potassium, blood pressure, and blood sugar/glucose.

Here is a chart from Apple Health of my blood sugar readings downloaded from my Accu-Chek meter. It covers about a month of data. You can easily see when the transplant surgery occurred and I started taking the anti-rejection medications. Prior to surgery, I was measuring blood sugar once a day before breakfast so it’s probably the lowest reading of the day. Even taking that into account, the number are definitely higher post-surgery.

The issue is even with an insulin shot before each meal, the numbers are still pretty high. My endocrinologist doesn’t like the numbers being over 200, which appears to be all the time except in the mornings. She want me to do another injection that has all-day insulin. The HumaLOG I’m taking now is very quick acting but doesn’t last that long. Two insulin injection pens… great.

This either means my blood sugar was high while on dialysis but was getting dialyzed out, plus my old kidneys were not filtering out any natural insulin, hence the low numbers. Or my blood sugar was normal but now the anti-rejection mediations are spiking the sugar levels plus new kidney is getting rid of natural insulin, so I need more. Hopefully it’s the second and the eventual lower anti-rejection medication dosages will fix the problem.

Blood pressure is hight too but I haven’t been able to figure out any patterns yet.

Heading Home

We’re checking out of the Airbnb apartment tomorrow at 11:00 am. I’ve been out of my house since late afternoon of January 26th, so a total of about 17 days. In hindsight, I probably could have saved $3,000 and stayed single nights at either Tiverton House or the Luskin Conference Center had I known about the free nights for transplant recipients.

The Airbnb was okay. The location is great but it’s a apartment with thin walls. We can hear the residents above walking around, and there are occasional loud bursts of music. There are many stores within walking distance, even though half the storefronts are closed up. It’s probably more exciting to live here without the pandemic. I do look forward to moving home since everything is familiar and I only brought the minimum of stuff to pass the day. Not sure when the first clinic appointment will be. They mentioned that maybe they will switch to telemedicine for me, but I still have to get labs done at a UCLA site so probably won’t save any time.

Ankle Cramps

One of the side effects of dialysis is muscle cramps. I believe by removing fluids during dialysis, you either become dehydrated, or your electrolyte levels get messed. One of the results can be massive muscle cramps, usually in the lower leg. I’ve had this many times during the first two years of hemodialysis. Once my leg cramped and would not let go for 30 minutes. I was limping for a week. More recently, probably because I stopped peeing, there hasn’t been much cramping because there’s probably too much water in my cells.

Last night however, my left ankle started cramping pretty hard. I had to get up, stand, and stretch to try and stop the cramping. I’m not sure why it started again so suddenly? Maybe I’m not drinking enough and I’m getting dehydrated by the new kidney? Body still adjusting to new levels of chemicals? I know my phosphorus is now on the low side. Does that cause cramping?

Along with the plushie, my coworkers also bought me a 32 oz. Hydro Flask. I have to drink enough water daily to fill the water bottle twice. I don’t think I’m drinking that much yet, but I’m still running to the bathroom every ~90 nevertheless.

Moldy Rice Cake

We had a food scare. I’m still pretty upset.

My parents’ church decided to give everyone over 75 years old a red bean rice cake. I think it’s to celebrate Chinese New Years. Someone delivered it to our house Monday while they were home, and they brought it to the apartment. We had some on Tuesday morning, and some more this morning. Well, my mom just go a call from a church member saying to look carefully at the rice cake before eating, because some of them became moldy. Sure enough, there were white mold spots on the rice cake that my mom did not see. I ate some both days.

One of the huge food warnings post-transplant is to avoid raw, unpasteurized, spoilt, or moldy foods since my immune system is suppressed by anti-rejection medications. Bacteria present on those foods can multiply rapidly and badly damage the new kidney (and other stuff in the body). I think their explanation was that the place they ordered from forgot to put in enough preservatives so it grew mold pretty quickly. Ugh, I hate this Chinese “chaobuduo” culture, which basically translates to “good enough.” But it’s not. This was actually pretty dangerous. Good thing that 1) my mom battered and fried the rice cake before eating, and 2) UCLA already reduced my anti-rejection medication dosage by ~half so I’m not as susceptible to infections.

I can’t imaging losing the new kidney due to some stupid food safety oversight. Needless to say, I’m not eating anything from my parents’ church for a long long time.

Post-Transplant Clinic 2/8/2021

Third clinic post-transplant and they cut my anti-rejection medication again.

MedicationDischarge2/1/20212/4/20212/8/2021
mycophenolate4 x 250 mg4 x 250 mg4 x 250 mg3 x 250 mg
prediSONE6 x 5 mg4 x 5 mg4 x 5 mg2 x 5 mg
tacrolimus4 x 1 mg4 x 1 mg2 x 1 mg2 x 1 mg

They were also thinking of stopping the tacrolimus today but the test results were not yet available during the appointment. Either they have not looked at it again, or decided to keep the prescription until next time. The result was 4.7, whatever that means.

Other notable lab test results:

  • Creatinine = 1.27 (reference range: 0.60 – 1.30)
  • Non-African American eGFR = 65
  • Phosphorus = 1.7 (referemce range: 2.3 – 4.4)
  • Potassium = 5.4 (reference range: 3.6 – 5.3)
  • Sodium = 136 (reference range: 135 – 146)
  • Glucose = 164 (reference range: 65-99)

All the red blood cell and hemoglobin results are low too, but improving. Maybe it takes longer for the new kidney to produce hormones than to filter blood and remove excess fluids. It felt like the nurse practitioner and attending nephrologist thinks that I’m making progress.

My sister wanted me to ask about the kidney cyst that was found in the donated kidney. That smudge on the CT scan delayed the transplant by over three years. It grew from about 8 mm to 10 mm in size. The nurse said that unless it’s complex and over 6 cm(!), they usually don’t remove it. They will do an ultrasound every year to keep track of it and see if it becomes cancerous. If spherical, then it would be slightly smaller than a tennis ball. I’m guessing that it’s probably long and skinny, and follows the natural pathways inside the kidney. Still, that’s pretty large.

Apartment Visitors (updated)

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.

Home Nurse Visit 2/5/2021

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..

Blood Pressure Variability

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.

Post-Transplant Clinic 2/4/2021

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.

Hand bruise

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.

Creatinine Levels

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:

DateCreatinine
1/11/202110.49
1/28/20216.74
1/28/20215.99
1/28/20215.35
1/29/20213.64
1/29/20213.47
1/30/20212.81
2/1/20212.2
2/4/20211.4

I think the next set of labs will likely have creatinine inside the normal range.

Isle of Dogs

Isle of Dogs

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…

Post Transplant Lab Results

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 Test1/111/281/291/302/1
Creatinine10.496.743.642.812.2
BUN7139405343
Potassium6.25.46.05.25.1
Phosphorus5.98.06.03.82.7
eGFR59192533

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.

Home Meals Today

First whole day of eating outside the hospital with new kidney. I was just focused on a few things:

  • cooked
  • low carbohydrate (~250 g per day)
  • lowish fat
  • low sodium
  • low potassium (for now)
  • high phosphorus (if possible)

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.

Home Nurse Visit

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.

Post-transplant Medications

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:

Sigh…

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.

Hospital Food

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.

Discharged

I was discharged earlier this afternoon after lunch. I think my last post was from Thursday around noon. Not much happened on Friday, except for a lot of education sessions and tests. So many tests. I was getting notifications on my phone every few hours about a new test result. Basically, all the main ESRD indicators were improving, especially decreasing creatinine, potassium, and phosphorus numbers. They were worried about the phosphorus so I even got phosphorus supplements for $50 copay. Crazy.

This morning, the nurse removed my foley catheter at around 9:00 am. OMG, that was one of the most intense pains I ever experienced. It was a combination of stinging and burning sensations deep inside you gut. I clenched my fists so hard that the EKG and O2 sensors began reading erratically. Then I had to try and pee out the rest of the urine myself. They wanted to see if I can empty my bladder so there’s <50 mL of fluid left. After the first try, there was still ~100 mL left so I had to wait and pee again. Each time a tiny bit would come out, the pain hit again. Finally, after 4-5 tries, I was able to completely void my bladder. In the meantime, they gave me GaviLyte to drink in order to induce bowel movement. This is the evil flush fluid I had to drink prior to my colonoscopy. I got two cups in before the nurse said never-mind… thanks a lot.

After getting lunch, I changed into my street clothes and gathered all my electronics plus a huge bag of medication, and checked out. Easy. My parents have already got into the Westwood apartment so they came to pick me up. Just like that, in about 40 hours time, I got a kidney transplant and was discharged by the hospital. There is still a lot of appointments to go, but the most worrisome part is over. No more dialysis for a very long time hopefully.

Post #1000: First Post With New Kidney

Another new beginning, this time with a pre-owned kidney. Surgery went well, and everything seems to be working. My donor (sister) is doing great and being discharged later today.

We got to the hospital at 6:00 am and it took about and hour to wait and get checked in. Afterwards, we both went to pre-op to change and get IV ports, etc. However, my potassium levels were still high so they wanted to dialyze me one more time. I got wheeled up to the dialysis unit, and was hooked up for two hours. UCLA contracts out their dialysis services to DaVita so I had some of their techs work on me. As usual, my fistula was giving them trouble; it took three people and four needle sticks to get good bloodflow. Our surgeries were scheduled for 8:00am but was delayed for five hours due to dialysis. I was taken to the OR around 1:00 pm and woke up at 8:00 pm. The first 30 minutes were weird. I was very disoriented and felt the urge to pee really badly. However, they had stuck me with a catheter to measure urine output so I couldn’t go anyway.

After an hour they wheeled me up to my room. Unfortunately, I did not get my own room and I’m sharing with a Korean man. I haven’t seen him yet since the separator curtain is always drawn. I did get the TV in my half of the room instead of the window. The first night wasn’t that good. I was tired and hungry and the catheter hurt. Also I had what felt like a full bladder which kept me awake. Meanwhile, a ton of people came through the room to take readings or to disseminate information.

I finally got something to eat around 9:00 am. To my disappointment, it was a bariatric liquid meal with plain broth, juice, sugar-free gelatin, and herbal tea. Lunch at 1:00 pm was basically the same.

Breakfast

I did go for a walk before lunch. The pain wasn’t that bad, but due to orthostatic hypotension, my BP would drop a lot when standing up and I would feel dizzy. I ended up walking around the building hallway three times and it felt good to get up. It’s about 2:30 pm now and I’ve already spoken to the dietitian and pharmacist. The main lesson is tomorrow morning. It going to be busy in this room with two patients. There is a lot to learn but I can’t screw up and lose this kidney. My sister needs her other one for herself. 😀

Checking In – Tiverton House

The ride up from Irvine to UCLA was pretty quick. It only to about an hour, even during rush hour. We checked in to Tiverton House first, then drove to the medical center for my COVID vaccination.

The room is decent for $179/night. I had to pay for my room while my sister’s room was comped. I guess they just charge Medicare for the room. It’s nicer than the room they showed us two weeks ago but I think getting an entire apartment through Airbnb is a better deal. There is free breakfast from 6:30 am to 9:30 am but we need to check in for pre-op at 6:00 am tomorrow.

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It’s about 4:00 am and I didn’t get that much sleep. My arm was fine yesterday but the vaccination site is really sore now.