Lou’s story: “I’m on the liver transplant waiting list”

Lou, who has Budd Chiari syndrome, shares her experiences of being assessed for a liver transplant for Organ Donation Week. Thank you Lou, and best of luck for the transplant. 

"Last week I spent a few days being assessed for a liver transplant at the Royal Free Transplant Unit. I learned so much about the transplant process and the need for more people to become donors: it's truly life changing for those receiving the organ.

"I now include myself in that list and the result, while a huge operation, will give me my life back. It is overwhelming, but they have a great support team to help answer your questions.

The assessment process

"During my stay I underwent a wide range of checks, from a CT and DeXa scans to ECG and Echo cardiogram tests on my heart, as well as a lot of of blood tests, all designed to confirm my underlying diagnosis and the severity of the disease. There are basic blood and imaging tests but then your specific issues dictate wider testing.

"I met the on-call transplant team who answered all my questions and made me feel less scared about what awaits me. My favourite session was the physical stair run with the anaesthetist. I had my shoes off and was determined to beat him up the stairs - I realised how competitive I can be!

"Yet it's more than just scans and tests - the assessment team spend time looking at the quality of your life. Emotional, mental and physical wellbeing are critical to the operation as well, so time spent with the dietician and physio play a part in the diagnosis and they offer great support. It is all about ensuring you are as healthy as possible ahead of the surgery to give yourself the best chance of recovery.

My journey

"In truth, at 49 I never imagined I'd be here. I have run marathons and love to exercise, I eat well and look after myself. But I am. And it sucks. I have liver cirrhosis, due to Budd Chiari syndrome, which I have had for more than two years.

"I have recurring bouts of hepatic encephalopathy (HE) that drugs are not resolving and, more annoyingly, general brain fog and lack of memory have had a negative impact on my capabilities at work. The HE has seen me lose days of my life as I have been comatose then lose all ability to work things like a phone or eat and the episodes are happening more closely together now and sometimes I feel like I am not living, just existing.

"Thankfully now I just need to sign the consent forms and my wait for a liver.

"I hope that organ donation gets the media exposure it needs this week. We need more donors to help acute and chronically ill patients to get a second chance. People like me rely on it."

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