Superbugs: My First Real Taste of Fear

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.

Nic’s Latest Update: Life as a #Lymewarrior

brave

‘Brave’ by WillowWaves at www.deviantart.com

“O snail
Climb Mount Fuji
But slowly, slowly!”
~ Kobayashi Issa

“Bran thought about it. ‘Can a man still be brave if he’s afraid?’
‘That is the only time a man can be brave,’ his father told him.”
~ George R.R. Martin, A Game of Thrones

 

Ah, Lovelies,

I’d hoped to be bringing you a good news post, a happy ‘post-surgery things are looking up’ story. And it is true, some things have improved. I am out of hospital. I am home in Brisbane, although not yet home to my precious farm. After an entire month of having my hair in a bun on the top of my head I have finally gotten all the knots from my hair and washed it (a three day effort that only others with chronic fatigue or pain will understand!). I have moved from a shuffling gait to a slow walk.

But I’m not as far along my healing journey as I had expected. Because, you see, having Lyme Disease complicates everything.

Having Chronic Late Stage Lyme Disease means that I’m immuno-compromised. Which is why I picked up two infections pre-surgery, which were treated with a metric tonne of antibiotics to get me infection-free before my operation. Treatment worked, but I was a ball of misery as the antibiotics killed not only my infections but lyme bacteria as well.

Surgery went well. Longer than expected and more complicated. I needed unplanned bowel and bladder surgery and repair. But I came out of it strongly and was making a good recovery, even on the new metric tonne of iv antibiotics and antibacterials I was given.

Unfortunately I then I caught a new infection (via my catheter we think) just as I was getting ready to leave hospital the first time. Tests showed it to be an antibiotic-resistant urinary tract infection superbug. It still responds to some old-school antibiotics, but not regular ones, so I was placed onto those.

One tablet, three times a day.

Which should have cleared it. But it didn’t, so now I am on massively increased doses. This old-school antibiotic is also used to clear late-stage lyme (but my urologist and gynecologist know nothing about that – Lyme is well outside their fields). It targets and kills the cyst form of the bacteria by damaging its DNA. Awesome news. So now I am on a drug that kills my superbug AND lyme. (The typical Lyme dose of this drug is just one tablet three times a week.)

Lots of lyme bacteria dying means lots of herxing. So now I am in agony. It hurts to pee. It hurts to poo. I can’t see out of my left eye, and vision is distorted from my right. I am sensitive to light and to sound. My skin hurts. My teeth hurt. My bones hurt. Old injuries are aching and paining. My muscles spasm and cramp. I have a killer headache. I am hot and cold in turns. I can’t sleep. It feels as if someone at odd times is tasering me, or pouring acid on my skin. And then there is my belly wound which goes from hip to hip, and the fact that my insides feel like someone has stitched them into a too tight sausage casing and then punched me in the gut a few times for good measure. And the pinched nerve in my back which has rendered one arm numb and painful and much less mobile than usual. Which instigated a case of shingles. My balance and strength is shot and I need a cane to walk. Let’s just say, it is not one of my better adventures.

I spent most of last night cry-laughing on the toilet. Because of my recent bladder repair it only holds about 200ml of fluid before I need to go, and I need to be drinking LOTS of water right now to flush both the drugs and infection from my system. Peeing hurts. A lot. Before, during and after. Although at least the feeling of pissing razorblades has resolved as the antibiotics kicked in and began working on this little superbug of mine. Now it only burns. So I sat on the toilet more than I was off it. Crying and laughing at the same time, because it was funny but pathetic, and scary but also ridiculous, and as I cried and laughed I panted power phrases like ‘This is just f*cked’ or ‘You can do this, Nic!’ depending on what frame of mind I was in for any given minute.

My friend Jennifer visited me while I was in the hospital and gave me a little bracelet. Inscribed on it is the phrase ‘Be Brave’. Those two words have been a constant reminder to me in the past few weeks. Be uncomplaining. Cry if I need to. Pull myself together. Chin up.

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I am mostly coping okay with the pain and lack of decent sleep. I am being well cared for by Ben, Nurse Bert, Cafe Dog and my dear friend Carly. I have everything I need. The hard thing is my vision loss (which is a temporary situation, we hope, and one I have faced several times while undergoing Lyme treatment in the past). This last fortnight I have had limited vision. My left eye is a complete blur, and my right eye has a restricted field of blurry vision – if I wear glasses, cover my left eye and increase my screen magnification by 300% I can read for short periods, but it is exhausting and gives me a headache. I can’t write. The television is a blur. Do you know how much stuff you suddenly can’t do when you can’t see?

I can’t check my messages on my phone or my emails. I can’t see my phone well enough to call a number – but Siri is getting good use as I task her to read my texts or call my mum. I can’t blog or update you. (I needed help to get this post written and published.) I can’t read any messages you may have written to me, so forgive me if I have not responded. Thank goodness for audio books and imagination land, and for good conversation in small doses.

I’m also exhausted, and after ten minutes of anything I am ready for a nap.

It isn’t where I expected to be, four weeks after surgery, but this is where I find myself. Nothing to do but wait for improvement.

I am good at sucking it up. Truth be told though, I am more than a bit over it. Still, it is what it is and it will get better – just maybe not in the timeframe I’d hoped for (and I am ALWAYS impatient!)

I’m missing my Year of ME Planner and choosing oracle cards to guide my week. I’m sad to be unable to tick things off my to-do list. From experience though, I know that it will all be waiting to help me get back on track again with all my dreams and projects just as soon as I am able. Meanwhile my wonderful team are working on all kinds of lovely things for next year’s Planner, our upcoming courses and retreats, and my new website. (Thank you Dana, Bek, Kerry, Chelsi and my PI transcription crew!)

I’m still sending you so much love in my daily meditations and healings, and I’m grateful for all the good energy you’ve sent my way too.

Hopefully things will sort out sooner rather than later and normal programming will resume. I’m looking forward to that. I AM getting better, it’s just a slow and bumpy road. Fingers crossed that my healing gets fast-tracked very soon. I am choosing to see all of this as a fabullous opportunity to kick Lyme’s butt in a bigger way than I had ever dreamed!

Hugs and love, Nicole xx

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