(Click here to read about Budd Chiari Syndrome in our Liver Disease Guide)

Liver transplants are for alcoholics and drug addicts.

This was my first, misconceived and misconstrued reaction to hearing that I might need a new liver. My second reaction was denial; a liver transplant did not feature in my life’s plans, and I was determined to keep my own liver, no matter what.

It was probably two weeks later that I found myself lying in a big bed with numerous IV lines in both my arms and legs, a feeding tube in my throat, a large, bandaged abdomen – and a new liver!

So, my transplant journey was unexpected, unplanned, unwanted (by me) and quite a bumpy ride. I was healthy and fit at 31; in a good place in my life with great friends and family, my own house, a good job and all of the things one strives for in a ‘normal’ life. I did have an ‘innocuous’ underlying medical condition which, by and large, I didn’t dwell on, as was advised by my clinicians. This had been diagnosed within weeks of my conferral with my PhD at age 26; a blood disorder called essential thrombocythaemia (ET). Simply, my clotting blood cells or platelets are too numerous, quite sticky and irregularly shaped, making them more likely to clump and form clots than normal platelets. ET is a myeloproliferative neoplasm and is generally due to a genetic mutation. I was prescribed daily aspirin and advised that this disorder was likely the cause of the persistent fatigue I was experiencing.

Fast forward to age 31, I was fatigued but coping well with a busy career and social life. This all changed in the course of a few days when my energy levels plummeted, and I developed a pain in my right shoulder. I lost my appetite and felt nauseous. When my abdomen became very distended and I couldn’t stay awake, I found myself at A&E in Mayo University Hospital. Following urgent scans and blood tests I was sent to Brigid’s Ward in St. Vincent’s University Hospital.

My consultant there, Prof John Hegarty, diagnosed Budd-Chiari syndrome. Quite rare – it affects one person in 100,000 of the general population – it is a blockage of the hepatic vein, the blood vessel removing deoxygenated blood from the liver. In my case, a large blood clot was preventing blood from draining and my liver was struggling. I was listed for TIPS (Trans-jugular Intrahepatic Portosystemic Shunt) and assured it was a routine procedure that involved inserting a stent (tube) to connect my portal vein to adjacent blood vessels. This would relieve the pressure of blood flowing through my liver and alleviate fluid back up that the blood clot had caused. At this point, there was a mention of a liver transplant, but I refused – under no circumstances! ‘Whatever happens’, I warned my family, ‘I keep MY liver’.

I remember being prepared for the TIPS procedure, but my next memory was two weeks later – lying down looking out a big window at a church with a green roof and ferries crossing the Irish Sea – with a large, bandaged abdomen, an almost-luminous yellow body, so weak and unable to talk or move very much. But I was alive! While my TIPS procedure was successful, an infusion to dissolve the troublesome blood clot had resulted in cardiac arrest, unmanageable internal bleeding, and then a medically induced coma. My super urgent liver transplant that followed – without my consent – was dramatic, scary, extremely worrying and tough for my family, and I was oblivious.

It was also very challenging for my surgeons who valiantly attempted to ‘connect’ my liver to quite a number of clotted blood vessels – the scans hadn’t quite shown the scale of blockages which included my portal, splenic and mesenteric veins. My recovery was slow and, at times, painful with acute organ rejection, numerous liver biopsies and lung and kidney damage, but with my supportive family, friends, SVUH staff from phlebotomists to professors, caterers to surgeons, I walked out of there, three months later, a very happy lady.

From an emotional perspective, I resented the removing of my liver and couldn’t make peace with having the liver of a deceased person where my own should be. It was also very difficult coming to terms with how close to losing my life I had been. In addition, I felt huge pressure to be ‘grateful’ before I was truly ready to be. This in turn led to deep guilt and anxiety. Adapting to all of these changes and new experiences took patience, time and therapy; but I believe I got there eventually, albeit with some speed bumps.
Karol xoo