Saturday, 11 July 2015

If I feel OK on the day ...

Everybody has a story. I've hesitated to tell mine but I think that perhaps I can now look back on it without becoming too emotional.

Where to start? Not at the beginning, that would take too long and I might never finish. So, I'll begin seven years ago, Melbourne Cup Day 2008, when I fainted in the kitchen of the home we'd just moved into a few weeks previously.

52 days later, early on Christmas Eve morning, I answered the in-house telephone beside my hospital bed to hear that a suitable donor liver was available and would I accept it. I was one of the lucky ones; I only had to wait a few weeks. The average waiting time is three years.

I don't remember much about the time between my collapse and the liver transplant operation. I was admitted to Ballarat Hospital where I underwent numerous tests and was informed that the problem was diagnosed as Cryptogenic liver failure, which basically means liver failure from unknown causes. At that stage I had no idea how serious my condition actually was so, even though I felt very ill, when I was discharged from hospital after three weeks, I assumed that I was responding to treatment and medication. Five days later, I collapsed again.

When I became conscious I was in a Melbourne hospital, 150 kilometres from my country home. I could not remember my name or even what year it was. I was shocked when my husband told me that I was in the liver ward awaiting a transplant. I didn't think I was that sick!

I'd had a nasty flu a few weeks before my collapse. We were moving house at the time, and so I assumed that my exhaustion and nausea was the result of the flu and the extra stress of moving. That is, until my urine turned dark orange. My GP took a litmus test of my urine sample and told me that I was just a little bit dehydrated and to drink more water. At that stage I was drinking about two litres of water a day - I didn't think it was possible to fit any more in and said so. A week later, when I became dizzy and disoriented while driving to the local shops, I knew I was in real trouble but was unable to get an appointment with my GP for another week.

I looked up my symptoms on the internet and top of the list was Cirrhosis of the Liver, which I immediately rejected. Liver disease happened to other people, not to me - and only alcoholics got cirrhosis, didn't they? Several days after regaining consciousness following my second collapse, I was able to get up and go to the bathroom. I was absolutely shocked to the core of my being to realise that the grossly obese woman I saw in the mirror with eyes the colour of egg yolks was, in fact, me! The day before I collapsed the second time I had weighed myself and I was 67 kilos. Now, two weeks later, I weighed in at 98 kilos and it was all fluid. However, it was not until the day before I underwent the transplant operation that I fully accepted just how sick I was, even though I had been told several times by specialist staff at the hospital that my liver had totally collapsed and it was one of the worst cases they had seen. I guess you could say I was in denial ...

The morning of the operation passed quickly, with medical professionals coming by every few minutes to explain different facets of the operation. They were all very reassuring and I had no doubt that I was in the best hands. I didn’t have time to be afraid, and I guess I was pretty well drugged up anyway. Everything seemed very clear, I knew exactly what was happening but it was like a dream, not quite real.

It was a six and a half hour operation, plus four hours’ preparation, so altogether 10 and a half-hours. My rib-cage was cut open down the centre, and then across in a dog-leg and folded back to insert the new liver. There were no stitches, instead, I had 36 small steel staples, which were much easier to remove when the time came.

Despite dozens of tests over the three week waiting period, the team at the Austin could not find any reason for my liver failure. When they removed my dead liver, it was the size and consistency of a golf-ball and they couldn’t even do a biopsy on it. My surgeon told my husband that I would not have lived another 48 hours without the transplant. It seems that it was all meant to be. I am so sad that somebody had to die before I could receive the transplant and I am still coming to terms with that, but I am so grateful to have this second chance.

I don’t remember Christmas Day, but apparently I woke up and recognised Tom. It wasn’t until the next day that I really became aware of my surroundings in the recovery room. For a few days I was struggling with reality, whatever drugs they had me on made for some interesting hallucinations, but at least I wasn’t feeling any pain.

I spent a week in isolation to minimise the risk of exposure to infection or viruses. My weight was not coming down, and the risk of thrombosis was a problem. My legs were so big that the largest support stockings were too tight for me. Finally, I was put on fluid tablets and at last the weight started to shift. I was losing three to five kilos a day, and by the time I was discharged to go home I was down to 76 kilos.

It was very strange to be home again. Everything looked familiar, but felt as if it belonged to somebody else. Of course we had only been in the house for six weeks before I collapsed, so I hadn’t even had time to settle in. I felt very wobbly after the drive, but I was home again after two and a half months, and that was all that mattered.

Over the next couple of weeks, my weight kept dropping. It leveled out at 47 kilos. I'd lost 55 kilos in the space of just under three weeks, and now we realised that I was completely malnourished. My stomach was bloated, I had no breasts at all, and my arms and legs were pathetically thin. Plus, after having multiple vials of blood taken every day over a two month period, I had collapsed veins, multiple bruises and track marks up both arms. I looked like a junkie!

Six months after the operation, my veins were slowly recovering, and I was assured that they would come good given time. I slowly regained the weight I'd lost, was eating lots of protein and organic whole foods, and began exercising regularly, walking our dog every evening and also building my strength with simple yoga exercises. I knew that there would be ups and downs along the way, but I felt very positive about the future and was looking forward to whatever came along.

My specialists came to the conclusion that my own immune system had decided my liver was a threat and proceeded to attack it - an auto-immune disease, in other words, most probably brought on by the virus I was suffering from at the time. They called it Ideopathic Fulminant Hepatic Failure.

I was discharged on an industrial-sized dose of immuno-suppressant medication, which gradually reduced over time, but which I must take for the rest of my life to stop my body rejecting the transplant. This means that I have no immunity from bugs and infections so have to be very careful, that I don't catch a virus because of the very real fact that it could kill me.

Restaurants, concerts and supermarkets, especially in Winter are not an option for me, and I quake when I have to sit in a crowded waiting room. The medication also makes me very tired, so that talking with more than one person at a time exhausts me within a very few minutes, and it affects my concentration so that I can only drive for 20 minutes or so without taking a break. I also suffer sensory overload when the smallest noise or bright lights can set my nerves screaming. 

I never plan ahead, invitations are rarely accepted and I only go out if I feel OK on the day, but I have learned to live with all that and my Art has been a huge contributor to my well-being.

I was always a keen photographer and, as therapy, I began to teach myself Photoshop. It's been an incredible help to my healing. Seven years later, there are still days when I have no energy for anything, down days when I'm feeling very low; I sit at the computer and lose myself in my art. There is nothing like it for lifting my spirits.

If you've got this far, thank you for reading. There is so much more to tell, but the rest must wait for another day ...

P.S. Your comments and questions are welcome, I will read and answer each and every one. 


  1. Wow Chris, what an incredible story and what a journey you've taken!
    Glad to hear 7 years later you have found art and a love of photography to help you through your battle. It's so difficult when people don't understand the dangers posed to people with compromised immune systems with everyday things they take for granted.
    Hugs Shanina

    1. Hi Shanina, thank you for commenting. Yes, it has been quite a journey and I really don't think I would have made it if it wasn't for my art. I hope my story helps people to realise how difficult it is for the many many people who have compromised immune systems for whatever reason. There are 2000 liver transplantees in the State of Victoria alone, without all the other organ transplant recipients, and so very many people on chemotherapy.

  2. You were right to think I would be interested, Chris. My empathy is infinite because although my autoimmune condition is different, you have familiar symptoms. And all that time I was asking and worrying about your husband, I had no idea you'd been going through all this. Art has made a huge difference to me for the same reasons. I keep reading that autoimmune conditions are on the increase because of the enormous stress involved in 21st century life. Take care. xx

    1. On top of LCSS, formerly known as CREST Syndrome, I had four TIAs in 2008!

    2. I had to look up TIA Sarah - Transient ischemic attack or mini stroke - that must have been terrifying!

    3. Yes, so many people suffering from stress-related diseases in this century. I'm sure my husband's cancer was caused from the stress of my liver collapse, and my mother died of pancreatic cancer while Tom was pre-surgery. You'd think we'd wake up, wouldn't you, but the human race rarely seems to learn from it's past mistakes. Hugs, and take it easy, my friend :) xo

  3. Oh, Chris. What you've gone through! And the challenges you still face! Not enough hugs in the world...((((((((((((((((((((hugs))))))))))))))))))))
    I'm so glad you're here to share your story.

    1. Dear Robin, wish you were here so I could return your hugs. So sorry for my late reply, your wonderful empathy made me very emotional which was greatly cathartic :) I'm doing fine now the winter's over, and just so grateful to be here. Many hugs and much love :) xoxo