Living With a Rare Liver Disease

I have this blog to write stuff because that is one of the things I really enjoy doing.

So I feel like I have a duty to write about the rare liver disease I have and how it has consumed my life for the past two years, and how it will affect me for the rest of my life. Why? Because frankly, all we do is google shit these days and when I google anything the plethora of Doctors tell me, I have very slim pickings on the information I find.

So not only is this post a life update since I am literally putting my life on hold for the next three months, but it is also to help inform and engage in real people terms.

My most recent episode that has led me to this point started in July 2015. By October 2015 I had a PTC drain inserted in the middle of my tummy and by April 2016 I had stones removed from my liver and the PTC drain finally removed.

Would you have known that there was an eight-inch tube taped to the middle of my stomach if you saw me casually on the street? No. From the outside and to this day, I look like a completely normal person.

So what is really going on with me? I suffer from a rare liver disease one in a million people suffer from (I would rather win the lottery) called Caroli’s disease. And how did I get so lucky? The exact cause is unknown says the National Organization for Rare Disorders.

And this means that my body, liver, in particular, creates stones (that you would normally hear about in other parts of the body such as kidneys or gallbladder), and they get stuck there. Doctors can’t zap them out like normal stones, but instead go in through the PTC drain I mentioned above and like an arcade claw game, take them out one by one.

So from October 2015-April 2016, that was my life. Heading to Doctors appointments, not being able to travel outside of Canada (I did get to see a lot of out West during this time though), heading to CCAC appointments weekly to have bandages changed and tubes checked, not being able to swim or shower properly, awkwardly trying not to get bumped and snag a seat on the TTC and not being able to physically move the way you normally would because I had this tube in the middle of my stomach I had to be wary of. I said goodbye to exercise and being comfortable sitting, moving or sleeping. It was exhausting.

I threw a tube going away party in April of 2016, celebrating being PTC drain free and with Doctors hopeful that I would be okay for a few years, knowing that I would eventually have to return and do it all over again. But that was future Marcy’s problems.

Summer 2016 was a blast and then out of nowhere, I was feeling it again. Everyone has a different way of describing pain, but the only way I can describe this is the shooting pains to my abdomen so bad you can’t stand upright, take full breaths, a pain that instantly consumes you.

I left Stoney Lake on Thanksgiving Monday of 2016 and was dropped off at the hospital doors. I left the hospital seven days later with another PTC drain on a different side of my stomach and the news that four new stones had already reappeared in my liver. I was re-tubed and the stones were back and still are as I write this.

So much for a few years from now.

And since October 2016, I have met with some of the best Doctors and specialists (according to Google) and am now heading into surgery on Monday, February 6 as the newest solution.

After numerous consultations with these experts, they submitted me to be a candidate for a liver transplant. The stones will always keep coming back in my current liver since that is what Caroli’s Disease is, so why not just get me a new one, right?

I was rejected for a liver transplant on January 10, 2017.

This is a good thing they tell me. My age and overall health played a huge factor into that decision and was told that eventually, that will probably be the outcome, but in 30 years from now I will still be a good candidate. So that was actually nice of them.

On February 6th I’m having half my liver removed (fun fact – it’s the only organ that can regenerate) and a procedure called a Hutson Loop (this is the best link I could find to describe what it is). And in a note to all my friends and family the only way I could describe this was, “they’re removing the left half of my liver since that’s where most of my stones are forming and taking part of my intestines and sowing it to my stomach wall so when they have to go back into my liver to remove stones in the future, they have a direct access point and don’t have to put these tubes in me anymore”. Gross, I know. Sorry.

But I can say there is not a more reassuring feeling than your team of Doctors being stoked about doing a surgery. Because this is such a rare disease and the two procedures above haven’t been performed on someone with my disease before.

And as the “adult” I now am, I signed that dotted line for research purposes. So that they can take that part of my liver and do research on it, so that medical students and anyone who else wants to can watch the surgery or learn more.

The recovery period is 8-12 weeks and I have to re-train my body on how to move, eat and don’t worry party people, I will be back eventually sharing a bottle of wine and grabbing drinks soon enough (the most common question I get).

If you add it all together, I’ve spent around seven weeks in hospital within the last two year, so what’s a few more if this is going to make sure I don’t have to go back anytime soon?

But reflecting on the last two years, I’ve still managed to grow my career – moving from one amazing job and starting a brand new one with people who have been exceptionally supportive. I’ve traveled the world, gone to music festivals, done crazy road trips, spent my weekends at the cottage, and done everything I would normally do.

I have refused to let something like this hold me back. Has it hindered me? Of course. Have I not been able to do certain things because of it? Definitely. Have I felt every emotion possible? You know it.

But as the day gets closer, I’m finding I’m worrying more about the recovery than the surgery itself. I have a lot of people in my corner and I’m very lucky to have people willing to help me and who have put up with me over the past few years. I already have extreme FOMO (fear of missing out), but am looking at the light at the end of this crazy tunnel I will always be stuck in.

See you in May.

Note- This is all based off my own experience and I am no Doctor or have any medical training to provide any form of recommendations. 


  • Don Stilling Reply

    Your a tough kid, a fighter you will get through this. We are given challenges in life, this is yours, do not give up, yes its is not something you wished for , but I know you will not let this from living your life down in Toronto where you seem to be so happy. Take care , are thoughts are with you. Uncle Don Aunt Cindy

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