Pretty as a child’s picture, but not fun at all! ESBL E. coli Image from www.scitechdaily.com

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”
~ Frank Herbert, Dune

Wondered why I haven’t been blogging this past fortnight?

Last year, in the aftermath of major surgery, I became infected with a UTI (urinary tract infection). You can read more about that here. I had a catheter at the time while my bladder healed from a tear and it seems that this is how I picked up this little bug. A hospital-acquired infection.

No biggie, I thought back then. A simple round of antibiotics and it will be fixed.

Alas, no. This particular infection, ESBL E. coli is a superbug. In other words my little infection was antibiotic-resistant. It was okay, I was assured. There were still antibiotics that would work.

I was given oral antibiotics in hospital and then more when I got home. Apart from being slow to clear the infection, these particular antibiotics also caused me vision loss. Ocular toxicity and crystals forming in the back of my retina mean that even now my vision hasn’t returned to normal, although it is 80% better than what it was in October last year.

After the vision loss I decided to step away from my specialists ( a gynecologist and a urologist) and work with my fabulous local doctor who is also my acupuncturist. Using diet, chinese herbs, IV Vitamin C infusions and acupuncture we finally got my bladder infection sorted, my eyes improved and me feeling really good again.

Hooray. I beat the superbug! I went off on holidays and ran at life full tilt. It felt marvellous.

Until late March when I became infected with Shigella, a nasty gastrointestinal bug that laid me out flat and totalled my already-compromised immune system. (I have late-stage Lyme-disease. It complicates everything.)

My UTI flared up again, and my local doctor took a urine specimen. It was Easter Thursday, and we didn’t expect a result quickly. But we got one on Easter Saturday. It was the same superbug – ESBL E. coli. No worries my doctor said. It’s resistant to quite a few oral antibiotics but there are some it has sensitivity to. We’ll get you on them right away. And he did.

I took a first course and then a second, but I wasn’t noticing much difference. In fact I was beginning to feel worse.

We took a second specimen and discontinued the drugs.

This infection felt different to the one I had in hospital in 2016. Back then I was pissing blood and tissue and was in complete unrelenting misery, needing to pee every ten minutes and then only producing a bloody dribble. This time my urine was cloudy, and my entire lower pelvis ached but although I felt awfully uncomfortable I didn’t feel like I needed to pee constantly. Instead I felt like something was about to burst inside me. Car rides over bumps were agony, and I couldn’t even bend down to trim my toenails because of the pressure it put on my bladder. My back ached, and I couldn’t sit or lie comfortably.

On Friday 28 April, the night before my retreat, my doctor called me at home, quite late. I still had the superbug. It was no longer responsive to any oral antibiotic. He’d consulted an Infectious Diseases expert about what to do next.  I needed to report to hospital early the next morning for IV antibiotics. One big dose should do it and then I’d be able to head to retreat as planned. Important, seeing as I was running it! And just to be safe I’d have a second dose on Monday lunchtime while everyone was on a break.

Getting ready for my IV antibiotics and finding it hard to believe that things had escalated to me needing to go to hospital to be treated.

But I didn’t feel better from my massive IV antibiotic hit. I tried not to panic and focused on other things.

Monday morning my doctor rang me early. I was in my room, getting ready for breakfast before a big day of teaching. My lab work showed that my superbug was now resistant to this IV antibiotic too. I was going to have to be admitted to hospital and try a new antibiotic, very strong, and given in infusions eight hours apart for five days.

My wonderful PA Dana and I madly restructured the course to allow me to be a hospital inpatient from late every afternoon until mid-morning the next day, then duck back to run the retreat in my seven hour window of free time.

We coped okay, but the drugs made me feel even more awful.

Resigning myself to being in hospital in the middle of my retreat

On Tuesday morning just as I was about to head back to my retreat the Duty Doctor came racing into my room. I couldn’t leave. The superbug was now no longer responding to the latest drugs. There was only one real option left. I was to be given a new drug straight away. My own doctor kept talking to the Infectious Diseases specialist, and I was given incredible care by the staff at Byron Central Hospital.

We rolled onto the final option, with the same regime of an IV infusion every eight hours over seven days. Retreat finished midday on Thursday and my husband Ben raced my back to hospital to stay. No more gate passes for me!

I’ve been really ill before. I’ve had some very big scares. But nothing compares to this one.

As Ben drove me back to hospital after my retreat concluded I realised that even after a full week of IV drugs I still wasn’t feeling improvement. I was struck with a sudden thought. There weren’t many things left to throw at this infection. It was a sobering moment. My darling husband. My precious pups. What if there was no more time? If things went downhill there was no time left to finish my memoir or my pirate tales. No time to go to the places I had wanted to travel to. No time to finally be well and just hang out with Ben. Or to go do yum-cha with my sister. Or go listen to my brother’s band in some Tasmanian pub on a Friday night.

Byron Central Hospital – best staff ever!

It took until Sunday night before my symptoms went from escalating to turning the corner. By that stage I was also taking a drop of Frankincense essential oil on my tongue every ten minutes. When my symptoms began to remit I took it back to half-hourly, and then to hourly. I’m not ashamed to say that I also called on God, my Ancestors, my Guides and on the healing energy that my students and friends were sending me.

Somehow, things finally went in my favour.

I’m home now. And I’m feeling wrecked from the enormous stress and quantity of drugs I’ve had to subject my poor body to. On doctor’s orders I’m on two months of rest to build my immune system back up. My next retreat has been postponed until September. We’ll give you more details on that soon.

Right now every bladder twinge, every burning sensation or cramp makes me wonder if we killed it. Or if this damned bug still lurks inside me, waiting for me to drop my guard. Something still doesn’t feel right. I’m trying not to worry about it. But of course, I am.

During the day I’m fine. But at night my dreams are all nightmares where the infection was never completely cleared and when it flares up again there are no more drugs and I die.

Suddenly, all that talk about antibiotic-resistant bacteria being the major threat of the future just got personal and very, very real.

So, apart from looking after yourselves, what can you do to make sure you don’t end up where I have? Eat well. Rest enough. Get some sunshine and some exercise. Only take antibiotics when prescribed by a doctor, and take them exactly as directed. Wash your hands well after going to the bathroom and before preparing or eating food. It’s simple basic hygiene but it helps enormously to stop the spread of infection. Probiotics and fermented food help too, by keeping your gut health strong. Ladies, when using the bathroom wipe from front to back to stop bacteria from your bowel potentially ending up in your urethra and bladder. If you’re immuno-compromised don’t take risks. Be extra vigilant with your hygiene and don’t be afraid to wear a mask and to use gloves or hand sanitiser.

And whatever you do, don’t get Lyme disease. Especially in Australia.  But that’s a whole other story…

The beautiful waterlillies some of my students brought me during my hospital stay.