A Fresh Start: Where I’ve Been and Where I’m Going

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It’s been quite a while, dear reader, since I last published. I had all the good intentions in the world about this blog, but then life happened, and it got a bit dramatic, too. You see, I have this chronic kidney disease called igA nephropathy, and just after I published my last blog post in March, I started to feel very ill. My mother, who lives a few blocks away, came down and called the ambulance, and soon I found myself in the emergency room with a doctor confirming that “you are very ill now”.

My blood pressure was through the roof, and the blood work soon confirmed that my kidneys were starting to fail for real. I tried to postpone it for a few weeks, but I soon needed to get ready for dialysis. First, they put a catheter in my chest, so that I could get started on dialysis treatment as soon as possible. And then, just a month later, I got surgery in my left arm to create a fistula where they could connect me to the dialysis machine with needles inserted into the combined artery/vein instead.

It went well for a while. My fistula matured fairly fast, and in late August, we abandoned the catheter but still kept in in place just to make sure that we kept access in case something happened with the still young fistula.

But then, it all went south, and fast.

You see, I live in Norway. We get a fair amount of rain sometimes, but this September, it was insane. The road collapsed, the town was split in two, and there was no way I could get to the hospital unless they sent a boat or a helicopter to fly me in. They decided I could go a day without dialysis, and so I stayed home while they mended the road again.

So I got in the shower, as I always do. But on that particular day, without access to the hospital, the protection around the catheter broke and it got soaking wet. I had to change it myself in a non-sterile environment.

A few days later, I got a fever, and I went into sepsis due to an infection in the catheter.

The antibiotics killed my gut flora, and a few weeks after the sepsis crisis was over, I came down with a severe case of clostridium – a potentially life threatening colon infection.

This went on for some weeks, and as soon as I started to feel better, the next crisis came along: Fluid in the lungs. So now I was in effect drowning from within for a month or two until they could diagnose me correctly and get the excess water out of me.

My dearest reader, 2024 was a regular and proper bitch. So very far from the regenerative year I intended it to be.

It wasn’t until the week before Christmas that I could both breathe and digest food well enough to get some energy out of it. I have lost a fair bit of weight, and my hair isn’t as thick as it was before, but my appetite is back, and I have hopes that this year will be much better.

So, what happens from here?

I’m still on dialysis three times a week. Next up for me now is to get my lungs checked, and then I’m scheduled for both a gastroscopy and a colonoscopy to get my digestive system examined as well. It’s still not functioning properly.

Then, we will start the process of getting me on the kidney transplant list. It has been delayed, because prior to me getting on dialysis, I refused to take some pharmaceuticals that gave me severe side effects. Apparently, compliance is a criteria for getting a transplant in Norway. Your rights as a patient are clearly defined by law, and you can say no to treatment as you please, but what they don’t tell you is that they might refuse to save your life later down the line if you do decline.

(Which in turn makes it a risky business to choose the holistic route of any treatment here. They just don’t tell you that before it’s too late.)

Hopefully, they now have enough documentation on me showing up for all my treatments and being a good girl for us to proceed. With any luck, I’ll have a new kidney by the end of 2025. At least, I expect to get on the transplant list.

Meanwhile, I need to do something about the dialysis situation, although I kinda like it in the center. It’s only five minutes away, and they send me a taxi every time I need to go there. But as my chronic kidney disease progresses, it will get harder to navigate unless I can get dialysis a bit more often than they can provide in the clinic. So we’re also starting preparing for home hemodialysis, where I will basically hook myself up to a dialysis machine right here at home whenever I need to. I’m hoping for a portable one, as it would make travelling much easier.

As for this blog, I really wish to get back to writing again now that everything seems to calm down again. With my health at the moment, nothing is ever guaranteed, but I’m aiming for posting at least once a week on this blog. My initial thought was to make this a pure, holistic and green blog, but I’m giving both you and myself a break from having to be perfectly natural and I have decided to go a bit more mainstream from now on. I will keep living a more or less natural lifestyle, of course, just a bit more relaxed and, well, natural.

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