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life during the pandemic

Well hello there! It’s definitely been a hot minute I last posted. While returning from a blog break always feels strange, this time the feeling’s especially foreign. So much has changed in the months since I last blogged. 2020 so far has been a rollercoaster of a year, with the pandemic affecting everyone for different reasons. As for me personally? Things haven’t exactly been smooth sailing, hence the lack of posts. After such a long time I thought it was only fair to give an update on what’s been happening with me lately, specifically on the health side of things.

There really is no easy way of saying this, so here goes. In June I had a kidney transplant due to ongoing issues with lupus, a disease that causes my body’s immune system to attack itself.

      

I realise this all probably seems quite sudden, even if you’ve been following me for awhile. Although I’ve mentioned my health in passing, I’ve never really talked about having lupus specifically online (or in real life, for that matter). But in reality my chronic illness has been a long journey for me, longer than most people are aware.

I was first diagnosed with lupus at twelve years old, and kidney damage is just one of many complications that come with the disease. For the most part, I’ve been fortunate enough to live a relatively normal life up until this point. But while my lupus is usually quite stable, my kidneys have only gone downhill as I’ve gotten older. And so for the past couple of years I’ve been in talks to receive a transplant, something I definitely had a hard time accepting at first.

It was late last year when my doctor finally decided it was time for me to go through with the kidney transplant workup, a lengthy list of health checks to ensure it was the right option for me. With each blood test and specialist visit I ticked off, the whole thing finally started to seem a lot more real. But even though I knew 2020 would be a tough year for me with the transplant planned, never in my wildest dreams did I imagine it to pan out like this.

Life in lockdown

With all the tests out of the way, final preparations for my surgery were meant to happen in April. And as luck would have it, that’s when the once-in-a-century pandemic hit Australia. All elective surgery in my state was cancelled, leaving patients like me in the dark.

Even though I saw it coming, the news was pretty devastating. And looking back now, I honestly don’t know how I got through the stress of lockdown. At that point, I had no idea when my transplant would be rescheduled. I was anxious that all the tests I’d completed would expire, and that I’d have to go through them all again. And of course, there was the ongoing fear of contracting COVID-19, especially as someone in the high-risk category.

With no clear end in sight, there wasn’t much I could do besides go on with business as usual. I started working from home, adjusted to life indoors, and tried my best to cope with the pandemic, just like everyone else. I even picked up a few hobbies, passing time by cooking and playing Animal Crossing. But as much I tried to distract myself, it wasn’t long before everyday in lockdown began feeling like Groundhog Day. It didn’t help that I was getting more tired than usual, something I’d later realise was a sign of things getting worse.

On getting surgery

Thankfully my transplant could be rescheduled in the end, but it wasn’t without a few road bumps. Time wasn’t on my side and I wound up getting pretty sick, just two weeks shy of my operation date. A trip to emergency later, it turned out that my calcium levels were dangerously low. I ended up having to stay in hospital and go on dialysis temporarily, all before my transplant had even happened yet.

Having been hospitalised many times before, the experience was nothing new for me. But after a certain point, I couldn’t help but feel down about my entire situation. I felt hopeless because my discharge date kept getting delayed, even as my operation loomed closer. Lonely, because there was no one I could talk to who would understand. Most of all, I felt frustrated that my health had spiralled out of control again, a feeling I’m all too familiar with.

As you can imagine, by the time my surgery rolled around I was dreading the thought of another hospital stay. But questionable food aside, it actually wasn’t too bad! As it turns out, hospital stays aren’t nearly as unpleasant when it’s a planned trip. Everything went smoothly, thanks to the amazing doctors and nurses taking care of me. I didn’t even mind the daily hospital trips after my discharge, or the 6am wake up call required to get there on time. Now that Australia’s on edge as cases fluctuate again, I’m just glad the hard part’s out of the way.

Where I’m at

While I couldn’t have asked for a better outcome, it’s still a bittersweet feeling when I reflect on the past few months. Something as life changing as a transplant is hard enough under normal circumstances, let alone in the middle of a pandemic. Plus there were a lot of things I wanted to do before my operation, that were simply made impossible because of how everything panned out. I wanted to eat sushi for the last time, something that’s a huge no-no for transplant recipients due to the infection risk. I wanted to see my friends, before my life would be consumed by daily checkups to monitor my new kidney. Above all, I wanted to spend time with family, and mentally prepare myself for whatever might happen on the other side of surgery.

But as it usually goes when you have a chronic illness, life doesn’t always go to plan. Recovery has been a bit lonelier than I would’ve liked, but lately I’ve been enjoying taking things slow and making the most of time at home. I feel so much healthier and more energetic now, a feeling I haven’t had in years. And as someone who’s been dealing with chronic illness since childhood, for the first time in awhile, I can truly feel optimistic about what’s coming in the next chapter of my life.

If you’re still reading, thanks so much for sticking around as always. I hope you’ve been staying safe out there, and look forward to catching up with you soon!