The catastrophe of ascites for an adult congenital heart patient.
(surgery - 20 March 2016 - replacement endo-cardio pacemaker and wires, completion of maze procedure)

I just wanted more to life
written 27 May, 2017 

It had taken 3 years to get to this point. And there we were. Everyone anxious. But the decision had finally been made and that was that. There as some excitement about the possibilities. What would the new normal be like? What would ‘being well’ look like? feel like? How would the recovery go? Id done it before, but now I'm much older - how much harder will it be? Will I even make it through the surgery?

I’d done everything I could to prepare myself. To prepare Fiona. To leave my life in order. I was ready, mentally, physically and emotionally. The anticipation was the biggest stress. I just wanted it done.

I sat with my family in my hospital room. As usual I remained in my clothes, but space dictated that I sit on the hospital bed provided. Fiona joined me. We told stories, we compared notes from previous hospital stay. We knew the drill and predicted the movement of the nurses. Stuart Watson visited while we waited outside for the toilets to be cleaned properly. Then we settled back in and waited.

As time moved on, the family yawned, moved in their uncomfortable seats, and realised the inevitable needed to be actioned. They went home to bed.

And I sat. 

I sat with my thoughts, concerns, excitements, anxieties. I was pretty much at ease with my decision - with one niggling doubt. What if it was the wrong decision. I knew it couldn’t be. I couldn’t live in AF. I couldn’t live with the low energy levels I had. I couldn’t work, or contribute to society, the way I was - I was just getting too tired. I wanted more. I felt selfish. But I wanted more. I wanted to be like everyone else - capable of contributing, capable of keeping up, capable of living longer. I was being selfish - I just wanted to be normal - or at the very least - more normal.

I will never forget the question the nurse asked as I settled down to sleep.

Have you been to the toilet?

     Um? Well - yeah. Kinda.

Have your bowels moved?

     Ah? um - yes. Kinda

Would you like an enima?

      Um - yeah - no. I think I’ll be fine.

Nows the time for it - if you want it, it needs time to work.

     Yeah - um - no. I’m kinda tired. I’ll try again in the morning. I think I’ll be fine.

The surgery went well. I had the best surgeon the world could offer me and she performed a spectacular job. This was Kirsten in her element. Taking on a challenge many others wouldn’t. But she took on the challenge with years of preparation, much consideration and planning, and hours of consultation. In those circumstances it would have been more unlikely to go wrong than to go right. And within days of surgery, I was sitting up in ICU - ready to roll, ready to take on the world. I looked so well. High on morphine, but I looked so well.

As the morphine wore off, I was moved to the surgical ward. It was time for rehabilitation. I knew I would be out of there within the week - I felt great. I was so incredibly thankful to everyone I met. I was up and walking within days. And I was hungry. I ate more in one meal than ever before. I shone with excitement about what the future held. The best food on the menu was Mushroom Pie. I consumed many mushroom pies that week. It was divine. I was on the road to happiness and health.

And then another innocent question, 7 days post surgery.

Have you been to the toilet?


Have you been to the toilet? When did you last move your bowels?


Your bowels? When did you last poo?

I thought and I thought and I thought. But wasn’t there a tube taking care of that? 
There was a tube for everything. Was I meant to do that?
What if I haven’t done that?

I had been eating like a pig. Truckloads of food was going in. Surely some of it had come out? But when? How?

Surely it couldn’t all be in there? In my body, stacking up? backing up? Surely that small pain in my gut would be worse it there was over a weeks worth of food in there?

We could give you something for that?

    No. no. no. I’m sure I’ll be fine. I’m not sure what to do? I don’t feel like going?

I sat on the loo. I sat and I sat and I sat. But there was nothing. Nothing - not a hint of anything wanting to move, or leave, or process. It was dead in there. Nothing. It was like a huge bottomless pit. It had no feeling, no desire, no need. It was dead.

But I knew it couldn’t be. I knew how much I had eaten. I knew I had not gone to the toilet in over a week - and there was no desire to go. Something was wrong. Something was very very wrong.

So the rollercoaster ride of laxatives began. Two tablets and an enima. Another two tablets of something else, and a kiwi fruit. My tummy began to expand. It began to churn. It began to move up under my ribs. It blew up bigger and bigger and bigger. The skin was taught and sore, and moving. The guts inside me twisted and turned, flipped and tightened, relaxed and expanded like a rubber band about to snap. But when I sat on the loo - nothing. Not a movement. No gas, or poos, or wees for that matter. It was as if anything around my hips had died - while my waist and gut fought and writhed and battled. And the pain. The pain reached a height I’d never experienced before - and there were not painkillers I could take that did not cause constipation.

Eventually my father couldn’t stand it. Take fentynol, you don’t have to put up with this pain. And so I did. And the pain left. And so did any desire to process the contents of my gut. Everything went back to sleep. Like a dormant giant I knew had to wake up. And when it did, it was angrier than ever.

I could no longer eat. I could not longer add to the turning, churning, pain. I could stand my the side of my bed and hold on for dear life, as my body ripped itself apart. I cried. I screamed. I thought I would die form the pain, and was devastated when I didn’t. I could not continue. And yet my tummy grew bigger and bigger and bigger and bigger. There was build up of gas, food, poos, wee - and there was fluid. Loads of fluid filling my belly. Adding to the pain, fighting for space, reacting to the twisting gut, flowing from my body into my peritoneum with no way out. 

After two weeks it was clear we had a catastrophe. I had a catastrophe. My gut was consumed by a catastrophe.

And so I had my first ascitic tap.

It was my worst nightmare. It was humiliating, painful, confusing, relentless, new, overwhelming, devastating, and it came with no hope, solution, redemption.

A nurse said to me “I know someone who comes in for these every fortnight”. Why did she tell me that. What on earth possessed her to tell me that. I was not that person. There was no reason for me to be that person. I was not destined to be that person. I wanted more - not less - to life. I would never be that person.

14 months on…..

I am that person.

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