🎉 🎉 🎉

During today’s clinic appointment, I met with one of the transplant surgeons. He actually met with my sister for the pre-op and post-op consultations, and was present in the OR during her surgery. I asked him when I could resume driving, since I am basically trapped at home if I cannot drive. He asked if I was taking any pain medications. I was prescribed oxycodone at discharge, but I have not taken any yet. The incision pain has been very manageable; I have not even taken Tylenol for any post-surgery pain. He then told me to hold out my arms and asked if I experienced any shaking or tremors. I think it is one of the side effects of tacrolimus. Finally, he asked if I could apply pressure to the brake pedal without any pain. I joked that my Tesla could drive itself, but with TACC (traffic aware cruise control), the car does a pretty good job braking and accelerating with traffic. I just need to watch out for traffic lights and stop signs.

Anyway, he said it was okay for me to drive so for the next clinic appointment this Friday, I am going to drive my car instead of asking my dad for a ride. This is a huge step for me. I remember one of the anxiety factors during heart surgery recovery was being unable to drive for 6-8 weeks. I believe I received approve to drive after about six weeks but it was an excruciatingly long wait. For me, being able to drive again is the first step towards a return to normalcy.

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

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.

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..

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.

The last thing I was worried about was my heart and the EKG UCLA ordered. I’ve done several EKGs, echocardiograms, ultrasounds, CT scans, you name it. After the ablation and fluid removal for pleural effusion, I didn’t think there would be a problem, especially since I met with UCLA’s cardiologist and he reviewed both my echocardiograms. Anyway, the results came in for the EKG on Monday and there were a lot of notations:

• Sinus bradycardia
• Left atrial abnormality
• Left ventricular hypertrophy
• Abnormal electrocardiogram

My heartbeat was at 57 bpm, which technically is bradycardia since it’s <60. I think that’s okay though, and my Apple Watch says my 7-day resting heart rate is 63.

For the next two items, I thought they were addressed in my heart stress test and echocardiogram results. I dug up the notes from my cardiologist on the last echo and within a long list of findings, it said:

• Moderate asymmetric left ventricular hypertrophy
• Severely dilated left atrium

So, did UCLA’s cardiologist, who wanted two echocardiograms done, review my results? They said he gave his clearance for transplant. Maybe these findings are another “no big deal.”

I wish someone would call me to let me know what is happening. If I need more tests, or the transplant needs to be delayed, so be it. But it’s agonizing watching all these tests results trickle in with out-of-range or non-normal readings and wondering if that’s the one which blows up the schedule.

Well, I didn’t get a call from UCLA today. It’s weird that they didn’t call me after dropping the bomb on me Monday afternoon. I did call my coordinator back but she didn’t answer her phone. Since her message did say that her assistant would call with the appointment time, I waited until today. At around noon, I called the assistant and had to leave a voicemail again. I don’t think anyone at the transplant center has answered my calls. It always goes to voicemail and then they call me back the next day. It’s about 12:10 am on Thursday and no one called me today either. A secure message through their portal was also not answered.

The planned surgery date is now <2 weeks away. I assume they want a more definite answer on the presence (or not) of Valley Fever since it could get a lot worse post surgery. I really doubt there is time for a proper diagnosis and treatment before the surgery date. That means moving it out into the future, with COVID-19 still a big unknown, and my sister needing more tests.

I’m more of a pessimist than optimist so I’m always worried about unknown stuff happening. Likewise for investments, I’m pretty risk adverse so I get worried when I buy stock. Anyway, only one day after the post-op meetings, there is a problem already. One of the blood tests that detects coccidioidal IgM antibody came back high. That indicates a possible Valley Fever infection. Symptoms include: fever, cough, tiredness, shortness of breath, headache, chills, night sweats, joint aches and muscle soreness, red spotty rash. That’s worrisome since I’ve been waking up at night in a cold sweat and I’m always tired. I just thought that was part of kidney failure and being anemic. However, I do have a rash on my lower back that’s showed up a few weeks ago. Again, I thought it was something else since the itch could be caused by high phosphorus levels.

Arg. Now I’m waiting for a call from the transplant center. They are scheduling me to see an infectious disease specialist, probably up at UCLA again. I read that in most cases Valley Fever will go away by itself. However, if I do have it, we need it gone by the time of surgery since the immunosupressive drugs will just make it a lot worse. I’m super worried that this will delay the transplant beyond my sister’s birthday and then there’s no telling how long the delay will be.

Sigh… why is everything so difficult?

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It turns out I also test positive for Epstein-Barr IgG and CMV IgG antibodies. However, it looks like 85% of adults also test positive so likely no big deal.

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I saw this NIH study that says if you test positive for Cocci IgM but negative for Cocci IgG, there’s an 82% chance that you’re not infected. That’s a pretty high false-positive percentage.

The clinical observation has been made that there might be an unacceptable number of false-positive enzyme immunoassay (EIA) test results for IgM among persons suspected of having coccidioidomycosis. Patients with a positive result for IgM by EIA are thought to have a diagnosis of acute coccidioidomycosis. However, this study found that 82% of patients with an IgM-positive and IgG-negative EIA result did not have coccidioidomycosis.