I love a good trilogy but this one gets six thumbs down. In each of 2021, 2022, and 2023, I lost a full month of normal life due to a compromised immune system.
In 2021, in late June, a simple slip on a wet rock led to a month of visits and stays in the Emergency Department. I chronicled how annoying this month was in A Slip in Time.
In 2022, traveling in the US, I had my first case of COVID-19. Again, the entire month of July, I was in bad health, and even after July it took a few months for my cardio system to return to baseline. Those Five Weeks of Joy have also been covered by yours truly. Good times.
In 2023, the trilogy reached what I hope is it’s final chapter:
Return of the Retrovirus (Weeks One and Two)
In late May, after a dinner at a local Yamba restaurant, I didn’t feel great. At first I thought it might be that I’d eaten some bad calamari (punishment for straying from my vego diet) and that my stomach was missing the digestive enzymes for squid. Then a day later I thought it might be food poisoning. I felt a little better briefly but once again on the weekend, all the symptoms came back and worse. I had also been experimenting with a FODMAP diet for the last few months, and so I had several working theories as to WTF was going on with my gut. All were wrong.
My GP couldn’t see me for three weeks, which was a great reason to switch GPs, but I waited a week just in case things settled. Instead, symptoms intensified and I was losing weight.
Emergency (Week Three)
I woke up one morning dizzy from dehydration, and drove to the local Emergency (which is “the thing you do” in country Australia since there aren’t enough GPs to see patients). They pumped me up with IV fluids, and ran the battery of tests to figure out which parasite or bacteria was running around my gut. I didn’t have fever, chills, a sore throat, runny nose or any respiratory symptoms. The doc thought we’d shortly know what bacterial troublemaker had transformed me into a human food processor instead of a nutrition absorber.
Negative, Ghost Rider… All tests came back negative. I found a new GP, booked in with him, and he said…
Let’s Repeat All the Tests
I totally get it. The previous tests were done in Emergency, you trust certain labs, you’ve been listening to lots of podcasts. A week later, and…. everything is still negative. So the docs start to look at you more seriously and say things like “We’re now testing for more serious things (cancer)” and “We’ve ruled out all the normal causes (we’re stumped)” and “Do you always dress like a 12 year old?”
Emergency, Emergency, Admission! (Week Four)
After a month of malnutrition, dehydration, and not being able to workout, your system is all messed up. One morning I woke up knew it was even worse than usual, and that I was heavily dehydrated. I drove to the Maclean ED and the ED doc knew me, and got started on the tests and fluids I needed. During the IV fluid transfer, the doc said something on my tests last week didn’t make sense. My tacrolimus level was 20! “Tac” is one of my transplant meds, and normally the level is around 4 or 5.
Because I am a transplant recipient, medical teams tend to get incredibly serious anytime my tests are out of normal ranges. Since this was related to my kidney meds, a kidney ultrasound was ordered, and they booked me in to be admitted at Lismore Base Hospital, about an hour away, since they had a renal specialty team. The ultrasound tech said that there was some narrowing of the renal artery, so it was a good thing I was seeing a renal team.
This is not my first rodeo, and my biggest mistakes in health care have been not advocating enough for myself and just letting the administrators run things. I arrived at Lismore at 4 PM and told them I was supposed to be admitted and talk to the renal team today. After waiting another hour, I told the desk I was going home, because the renal team was likely gone for the day and I wasn’t staying overnight for no reason, and I’d rather sleep in my own bed and come back the next day. The ED admin pleaded and tried all kinds of attempts, and I told her I would stay if I could talk to a nephrologist in the next 5 minutes I’d stay, which I knew she would not be able to do. I went home and slept in my own bed.
The Answer: COVID
The next morning I drove back to Lismore Base ED, was admitted, and one of the first tests they did was a COVID PCR test. Positive. It all made sense. Like in a Christopher Nolan film, all the pieces began to fall together though it still didn’t make complete sense. Even though I hadn’t had any respiratory symptoms, there were so many repeat symptoms from COVID last year: food didn’t taste good, I had a stronger ringing in my ears, I had gastro, and I was tired — but I chalked most of that up to malnutrition and dehydration. All the docs I had seen had jumped to the same conclusion, that it couldn’t be COVID, but we were all wrong.
That night I had my first IV dose an antiviral called Remdesivir, which sounds like a Lord of the Rings heir to some distant Northern Middle-Earth throne. Within one hour of the treatment I felt better and my disgestive system began to work normally again. Two more days and two more doses later, I was discharged. I had lost six kg (13.2 lbs) and was skeletal, but I could start putting the weight back on and working out.
Back to normal
Because they had seen some swelling in the lymph nodes on a CT scan of my abdomen, I had to repeat an Abdominal CT and a renal ultrasound, and I enjoyed the third colonoscopy of my life, where once again the Gastroenterologist complemented me on the health of my colon. I’ve gained all but a couple kgs of the weight back, and that should come back once I start swimming again.
While all this sounds so difficult, I’m honestly used to it. Not being able to work out and missing a lot of work are the most frustrating parts of it all — but this is honestly just part of the journey for someone who is lucky enough to have been given a kidney which will celebrate it’s 19th transplant anniversary on December 21.
Here’s to not losing a month in 2024!