My fight with and recovery from necrotising fasciitis

It’s been over three months since I rocked up at the Emergency department of my local hospital feeling decidedly off and with the symptoms of gastro and a sore elbow. Never did I think I would end up staying there for over two weeks and leave with a scar the length of my entire arm, having survived a life-threatening bacterial infection called necrotising fasciitis.

It feels like a good time to close this crazy chapter of my life as I feel like I’m almost completely recovered, both mentally and physically. But as it was something so huge, I thought I’d write it all down for posterity (as writers do!) and then try and put it to bed. I also hope it’ll be a hopeful tale for anyone else finding themselves with NF and googling from their hospital bed. Because when I started doing that, I found things like this:

So, let’s go back to the beginning. It was 17 December 2022 and we took the boys to the Christmas lights at Hunter Valley Gardens to celebrate the end of school and the start of the holidays.

On the drive up, I remember feeling a bit crampy but nothing serious. By the time we were leaving in the early evening, I had really bad tummy pains that felt like gastro. I had a restless sleep that night and felt very nauseous and sweaty. The next morning, I felt awful and I was sick a few times. As I went to get up from the bathroom floor, I put my weight onto my left arm and realised my elbow was really sore. I didn’t think much of it as I went back to bed. I texted my friend that I wouldn’t be able to see her that night as I had some kind of bug. As I lay in bed, for maybe another hour or so, I noticed my elbow was getting very sore very quickly and felt hot. And my gut instinct told me something just wasn’t right.

I rang Health Direct (hoping to be told it was nothing to worry about and avoid going to hospital if I’m honest). After answering the nurse’s questions and realising I was also feeling dizzy, she told me to go to Emergency. I was triaged and the nurse was very quickly on the phone, talking about sepsis (I knew that wasn’t good) and fast tracking. The next 24 hours are really blurry but I know I found myself admitted and on a ward with an increasingly red and painful arm, an IV drip of antibiotics and watching the infection spread at an alarming rate as more and more circles were drawn on me with pen to track it.

The next day, I had my first of five surgeries where it became clear very quickly that things were more serious than they thought. Samples were sent by the orthopaedic surgeon for testing and it transpired I had necrotising fasciitis, caused by a strep A infection. This is flesh-eating bacteria that was quickly taking over my arm. My wedding and engagement rings were cut off as my entire body was swollen due to severe infection.

That night was my first of seven in ICU. Again, I never imagined I would find myself in ICU. The nurse, who was very experienced and wonderful, told me it was perfectly normal and okay to let it all out and have a cry, and boy did I do that. I still hadn’t seen Damian and the boys as everything had progressed so quickly and I felt pretty lonely and scared. It was a week from Christmas and I said as long as I was out by then it was fine, obviously not realising quite how serious it all was. She told me, kindly, that that was very unlikely and she thought I’d be in for weeks. And she was right. I was grateful for her managing my expectations.

I’m pretty sure I had the next three surgeries one day after the other. Some were under a general and a couple were not, as I developed pneumonia while I was in hospital which made that risky. Before the second one, the plastic surgeon told me in no uncertain terms that the procedure was about saving my life first and foremost, rather than my arm, and they needed to be aggressive. Reality check (and more tears) right there. Again, in some ways it was helpful to manage my expectations and made me realise what needed to be done had to be done.

In hindsight, I never thought I was going to die but I did think I might lose my arm. I didn’t really have any time to process any of this. I was on a lot of drugs and when I was offered a social worker I really didn’t feel like I could cope with anything more than getting through the next surgery.

The process for treating necrotising fasciitis is called debridement and involves thoroughly cleaning the wound and removing any infected tissue, usually several times. Then the wound would be left open and hooked up to a vacuum assisted closure machine which promotes healing. Thankfully I could see none of what was going on under my dressings!

Each time the next surgery rolled around I was scared — of the anaesthetic, whether I would feel anything, what they would find — but I just had to go with it and trust in the medical professionals and the process. Many people have said I was brave but I had no choice in any of it. I couldn’t say: “Sorry, I’ve had enough now. Can I go home?”.

There were times in ICU when I was completely out of it; off my face on oxycodone and seeing people out of the corner of my eye who weren’t there (I eventually asked for different painkillers!). When I had pneumonia, I had oxygen 24/7 and couldn’t even make it to the bathroom without being scarily breathless. I had a catheter, was given bed baths and had to use a commode. I couldn’t have felt more vulnerable but the nurses were incredible.

Damian and the boys visited every day and those visits kept me sane as well as the amazing care from the doctors and nurses. Everyone I encountered was brilliant. And speaking of brilliant, let’s talk about my husband, who took on the role of both mum and dad at home and coped amazingly, even wrapping the kids’ Christmas presents (potentially the first and last time this will ever happen!) and learning how to use the robot vacuum. He even started dressing the boys in matching outfits, much to my delight and amusement.

Christmas Day was hard. Damian filmed the boys opening half their presents under the tree and sent the videos to me. It did break my heart a little. Then they brought the other half of their presents into hospital to open with me. A nurse bought me a real coffee from the cafe and even catering made the effort with their special Christmas Day menu! I’ve had better Christmas lunches but I appreciated them trying to make it special! Later that evening, Damian came in without the kids and a video he’d organised and put together of all my best friends and family from around the world leaving me get well messages. There were tears!

Behind the scenes, friends were delivering food and sending food delivery vouchers to Damian and I and offering to help with the kids. My in laws were amazing. I realised, for someone whose family are on the other side of the world, how big my “village” here in Australia is. I’m a lucky girl.

Gradually, I got better and stronger and could come off 24/7 monitoring. I knew my time in ICU was up and I was actually a little sad because the care had been so incredible. But it also meant I was one step closer to getting home. I would have to wait a few days for my (hopefully) final surgery (probably because it was Christmas) where we’d find out whether or not I would need a skin graft (which I really didn’t want).

I knew ward life would be different because it’s no secret all our hospitals are under the pump. I woke up the next morning feeling very isolated in my room at the end of the corridor. When the doctors and nurses came on their rounds and asked how I was, I promptly burst into tears. I’d had enough of being brave.

I will never forget the incredible nurse who later asked if she could give me a hug and, once Damian and the boys came in, arranged for me to be able to go with them in a wheelchair to the hospital cafe. As I was still hooked up to a lot of machines this required me to have a nurse chaperone. It was the first time I’d felt fresh air in over a week and that time feeling relatively normal was just so appreciated and special. Nurses like her are true angels. I feel teary just writing about this.

I was awake for my final surgery (I had regional blocks when I was awake and other times I had general anaesthetics). This was the big one where we’d find out if I needed a skin graft and, if I didn’t, it would be the last. Due to one of the previous surgeries when I was awake being traumatic for a number of reasons, the team went above and beyond to make me as comfortable as possible which I really appreciated (shout out to anaesthetists, you’re also amazing!). I remember hearing the plastic surgeon saying that we were going to be able to close up the wound without a skin graft and feeling elated, lying there knowing it was all almost over. I think that was 28 December 2022.

I let a few very close friends come to visit at this point, when it became clear I probably wouldn’t be out for New Year’s Eve either and I needed to keep my spirits up. One walked in and promptly burst into tears, which says it all really. In some ways this whole experience was harder for the people who care about me than it was for me, not being able to do much or really understanding what was happening or what the outcome might be.

New Year’s Eve was celebrated by the boys bringing in Happy Meals and I finally left hospital on 2 January 2023. I remember every last step towards ‘escape’ being so exciting (catheter out, PICC line out, wound dressing changed). When I was finally free of all attachments and could go to the toilet by myself and even for a slow walk around the hospital, it felt so bloody liberating!

Getting home was so nice, if frustrating, as I couldn’t do much at all with my arm. I couldn’t even tie my own hair back or get food to my mouth with my left hand (luckily I’m right handed!). I had a lot of painkillers and antibiotics to keep track of, I couldn’t drive and was crazy tired so I couldn’t do much at all. The kids were still on school holidays and Damian went back to work (from home). It was a strange limbo time, not really knowing what my recovery would look like. I even ended up in the Sydney Morning Herald after a journalist saw my story on Instagram.

And then, one week later, something amazing happened. Damian came home with my very best friend in the world, Dani, who had come all the way from England to see me and help with the kids for three whole weeks. What an amazing gift! You never expect to get three weeks together with your best friend as an adult, especially when they live on the other side of the world. I was so touched that she left her own son behind with her husband to come and help me with mine. I think one of the first things I said was along the lines of “it was almost worth it for this!”. It was the absolute best thing to have happened for my recovery and mental health, having the company, someone to drive me around for little outings and then sit with me on the couch watching the movies we loved as teenagers as I took three hours to rest and recover from the smallest exertion! I will never ever forgot that special time and what she did for me.

Every few days, some movement would come back with my arm and I’d realise I could do things again. By the time I had my four-week surgeon follow-ups, I had full movement back. I obviously lost strength in my entire body. Two weeks in a hospital bed will do that. I also felt overwhelmingly tired for weeks but recently blood tests revealed my iron was really low and since I’ve started supplementing that, I feel like a different person.

I have been having counselling to cope with processing such a traumatic event and it has been really helpful and an important piece of the recovery puzzle. Three months on, I am doing three sessions of strength training per week and feeling empowered and excited by getting stronger. To think I couldn’t even tie my own hair back when I left hospital and that I can now lift dumbbells and do burpees! I also got my mangled rings fixed and back on my finger, which felt very symbolic.

For anyone who stuck with this rather self-indulgent essay to the end, thank you!

My huge thanks to Dr Jobe Shatrov (orthopaedic surgeon) and Dr Tim Wang (plastic surgeon), the doctors, nurses and staff of ICU, ward 3A, and the wider team of people I saw from orthopaedics, plastics, infectious diseases, and the anaesthetists at Hornsby Hospital. And of course the nurse at the end of the phone at Health Direct who sent me there in the first place. Had I not been treated so quickly and so well and the bacteria had spread to my muscle, I may not have kept my arm. I have read enough stories of NF cases in Australia since my experience that have ended in amputation, I will never take that for granted. Also thanks to my incredible husband Damian, my best friend Dani, my family, my beautiful village of friends, the blog readers and instagram followers (including some NF survivors) who kept my spirits up with their many encouraging and genuinely caring messages, my colleagues Amy and Jodie and my understanding clients.

Aged just 4 and 7, my boys coped amazingly well with everything although it was scary and upsetting for them at times. Charlie still talks about when Mummy had bugs in her arm and kisses my scar better, and they both reminisce fondly about all the juices and biscuits I saved for them when they came to visit! Priorities, right?!

We still don’t know exactly how or why that Strep A got into my elbow but can only assume through a tiny scratch. If I had a dollar for every time I’ve been asked how, I’d be rich! It’s quite hard getting your head around having had something so rare and unlikely out of nowhere and for no particular reason, but it doesn’t really matter at the end of the day. There’s nothing I could have done and it wasn’t down to anything I had or hadn’t done. Just a big dose of bad luck but I’ve never really felt sorry for myself.

I am overwhelmingly grateful for how things turned out and the care I received. And I’m ready to move on now. I’m proud of my resilience and I’m being proactive to stay as healthy and strong as possible going forward so if (God forbid!) I ever end up facing something like this again, I have the best chance of beating it!

Funnily enough, I’ve held off publishing this for a few weeks now, which is probably a tad psychological, like putting it out there in black and white makes it somehow really real! Because some days it does still feel like it was a movie or happened to someone else.

I’m also acutely aware that people go through much worse things than this every day and that I’m incredibly lucky that once the infection was effectively removed from my body, I was out of danger and then it was just a matter of time to get better. I don’t have cancer or something chronic. But of course I can’t not reflect on the fact that my own mum died of cancer at around my age. My boys still have me. We are so lucky and have so much to be thankful for.

Remember, as terribly clichéd as this sounds, life is short and you really never know what’s around the corner. Always always get checked out if your have a health concern or your gut feeling is that something’s off. And I do truly believe that a positive mindset is extremely beneficial to your physical recovery. This experience will stay with me forever, and remind me what’s really important in life. And what isn’t!

Thanks once again to everyone who sent well wishes and if you’re going through something similar and would like to chat, please do reach out.

Want the best of the blog straight to your inbox every week? Plus a free eBook about what made the most impact in Jen’s own reno? Sign up for our newsletter.